tag:blogger.com,1999:blog-57912811935056342082024-02-20T08:31:51.760-08:00Starting from the beginning...
Welcome to my blog, I hope you enjoy reading about our journey of my son and his 6 toes, his big sister also features a lot. So heres our journey..afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-5791281193505634208.post-14198507744638478472020-07-09T09:10:00.001-07:002020-07-09T09:11:53.711-07:00N's little foot little update<div style="text-align: center;"><span style="font-family: arial;">Well hello! it has been a while since I have written a blog post about how we are doing and where we are up to in life, both with N growing up and limb difference bits and bobs.</span></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">Obviously with Covid-19 going about, life has pretty much been on hold. Both kids have been at home and not at nursery, I'm a key worker and have continued to go to work like normal - which has been an absolute god send. That sense of normality has been brilliant, but it also gave me a break from home/kids/being in all the time. </font></div><div style="text-align: center;"><font face="arial">Just be before the official lock down began we were already self isolating as N had a cough and temp (very broad markers for a less than 2 year old!), we were in complete isolation for two weeks, a week before the official bit. That bit was TOUGH, we had gone from being able to do normal everyday stuff, to then being locked in the house - just to make it clear I absolutely think it was the right thing to do, and everything that has been suggested with lock down, but i did not anticipate how it would make me feel. In the grand scheme of things though 2 weeks seems like nothing now, my grandma has been shielding from the start, shes 90 and owning it like the legend she is.</font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">The kids were great though, I think allowing them to actually get bored has worked wonders, at the time they both seemed to take it in their stride and adapt beautifully. </font></div><div style="text-align: center;"><font face="arial">During this time we understandably got a phone call to say the annual little foot review had been cancelled. It would have been out first official one, and I was oddly looking forward to see what happens and what we talk about. I am more than happy to wait though, we don't need to go and have no urgent need to be in a hospital environment. I guess we will be going next year, and I will be able to report back on what happens then. </font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">Like most families we have gone through one of us being furloughed - my husband has been furloughed for about 2 months now. Initially I think he thought it was brilliant - Xbox time, watching TV, sleep-ins that the kids allow. He luckily got 80% pay and we haven't had to pay for childcare for the whole time he has been furloughed which has helped both financially and mentally. </font></div><div style="text-align: center;"><font face="arial">I have (mostly) loved it, I have been able to go for runs, bike rides, and as lock down has eased I have been able to go on socially distanced walks and talks with my friends, meet friends babies (after what feels like forever!), and swap shifts as needed. The freedom and flexibility has been great. </font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZpQ3OWqUJlRkJsi7Fw-1KSUgJpzQ2I-pOADU1D5cVYDVOt0ziJZnLMclmz30tiU2YvrrSMy4gJhAKySDqUtG-3_YJKkbWIbOdyucMQqdCv_4w8Y2ZHirH1h4_4LmvHmz2Nv_v-sHnmU0/s1863/IMG_1540+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="1863" data-original-width="1830" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZpQ3OWqUJlRkJsi7Fw-1KSUgJpzQ2I-pOADU1D5cVYDVOt0ziJZnLMclmz30tiU2YvrrSMy4gJhAKySDqUtG-3_YJKkbWIbOdyucMQqdCv_4w8Y2ZHirH1h4_4LmvHmz2Nv_v-sHnmU0/s320/IMG_1540+2.jpg" /></font></a></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">Once lock down was eased enough for the shops to open, I booked for N to have his feet measured at Clarks, and then booked his orthotics appointment. </font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">The orthotics appointment was booked easily after a quick telephone appointment, and the done perfectly with the right PPE and social distancing rules. </font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAtLhZhTLOSW9fj7MwbCWzglB0zkPJGsilC5a4WCCxhhOv_JLaSu-uGwlwQXzyNzCa7zQ-pfK7GyG5U8UKPrRHsGap_hiZB5k9hkyuOHnkRPTQ3GqX4MuOIFex4xSzIB8IA5rvFSWjbpY/s2576/IMG_1543+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="2576" data-original-width="1932" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAtLhZhTLOSW9fj7MwbCWzglB0zkPJGsilC5a4WCCxhhOv_JLaSu-uGwlwQXzyNzCa7zQ-pfK7GyG5U8UKPrRHsGap_hiZB5k9hkyuOHnkRPTQ3GqX4MuOIFex4xSzIB8IA5rvFSWjbpY/s320/IMG_1543+2.jpg" /></font></a></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">We turned up and went in for our appointment as usual, with a different guy this time but he was lovely and Scottish - everything he said just sounded more positive, they way he said 'wee foot' warmed me. When he sat down he asked about what we were there for, what we needed and asked to do an assessment for his leg/foot.</font></div><div style="text-align: center;"><font face="arial">N was brilliant and let the guy look at this leg length - his leg length discrepancy has gone from mm's to about half an inch, and his hips are out of alignment by about 1 cm now to. He will need to have his usual insole and a raise in his shoe now to.</font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">This made me feel a bit weird if I'm honest, I initially felt upset and angry and all those feelings I had felt when we first found out about his foot came flooding back. The fear of what his future will be like, guilty that I have put this upon him, gutted that he needs to have more adaptions. </font></div><div style="text-align: center;"><font face="arial">In hindsight, I think I was just caught of guard, other than the insole in his shoe nothing else needed to be added, and now it did. I guess it was always going to happen eventually, I had noticed he was walking with more of a limb but he hasn't even been walking a year yet (he finally did it at the grand old age of 17 months) and its tricky to work out whats his foot/leg or whats him just figuring it out.</font></div><div style="text-align: center;"><font face="arial">So, anyway, that feeling sat for a day or so. But now I'm okay with it. There is more now to consider with shoes and which ones will be the best for the orthotic, his leg and now the extra raise he will need on the sole. </font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">We did have a talk about what he might need in the future, and got onto splints/prosthetic etc. The guy we saw was brilliant, he got out a splint that someone with talipes would wear, and then a prosthetic splint type thing that Olympians wear. He said that when N gets to the stage of doing sports he might need one as the front of it will give him the push off you get from your forefoot. </font></div><div style="text-align: center;"><font face="arial">N is like any active kid, he loves kicking a ball about, he runs instead of walks and has a mean throw - I'd imagine one of the splints will be needed at some point. </font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjShKiNxygjDDiVQ6IVetj7eSYHfmMCjSSmnw6uMEF_XfG2NyPFL2kajJTvpxAlsi3M6tdiMM6E9cZ607bhdpSUji8Dtyph8wmZfsvzwQenewkGvvXxKihn80aarANBpVL0KK9pioM20Eg/s2723/IMG_1544.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="2723" data-original-width="2701" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjShKiNxygjDDiVQ6IVetj7eSYHfmMCjSSmnw6uMEF_XfG2NyPFL2kajJTvpxAlsi3M6tdiMM6E9cZ607bhdpSUji8Dtyph8wmZfsvzwQenewkGvvXxKihn80aarANBpVL0KK9pioM20Eg/s320/IMG_1544.png" /></font></a></div><div class="separator" style="clear: both; text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">Part of me wrote this as therapy for me, but also to hopefully help someone else dealing with adaptions or new news, that feelings no matter how weird are okay. And you know what, its okay to sit in them feelings for a few days if you need to, even if the emotions feel misplaced and you thought you had got over things. I've mentioned in previous posts that I don't blame myself anymore for N's foot but there was a huge chunk of time where I did and those feelings bubbled back up to the surface for a little while whilst I digested the info.</font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">Anyway in other exciting news, we have been asked to be on Fiftyshadesofmotherhoods podcast and to also be part of an exciting project. All of which I will share when we are able to.</font></div><div style="text-align: center;"><font face="arial"><br /></font></div><div style="text-align: center;"><br /></div>afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-86216858079262645072020-06-17T00:58:00.001-07:002020-07-04T11:12:36.592-07:00Vanessa's story Vanessa shares her story about her gorgeous daughter ivy.<br />
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Tell me abit about you?<br />
Our family lives in Vancouver, Canada! I met my husband about 7 years ago, and we quickly fell in love and knew we wanted to spend our lives together. We had our first daughter, Elena, in June <a href="tel:+442016">2016</a>, and our second daughter Ivy in February of <a href="tel:+442019">2019.</a> I have my history degree and hope to be a librarian one day, but for right now, I enjoy my days staying home with my girls, and I work in the evenings in the service industry.<br />
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What is your daughters limb difference?<br />
My daughter Ivy was born without forearms and hands, and she also has PFFD (Proximal femoral focal deficiency), which basically means that her left hip is curved and her left femur is curved and shorter than her right.<br />
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When did you find out?<br />
We found out when I was 19 weeks pregnant. We had our detailed scan, and heard the results the next day from our midwife. I felt overwhelming feelings of grief, fear, worry, and anxiety… suddenly the future was so unknown and it was terrifying. I felt such fear for the health of my baby girl, as we had so many unanswered questions. We were quickly referred to BC Children’s Hospital where we met with perinatologists, medical geneticists, and genetics councillors, but we ended up with more questions than answers and sadly they were unsupportive in terms of us continuing our pregnancy.<br />
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What help and support have you been offered?<br />
Since Ivy was born, I have actively sought resources, support, and a community of families with kids like Ivy… and I have not been disappointed. When Ivy was one week old, she was enrolled in the War Amps of Canada CHAMPS program (for child amputees), and at just two weeks old, we attended our first CHAMPS seminar. It was the first time that my husband and I felt like we had found “home”, and we felt so much hope for Ivy’s future. It was an overwhelming sense of relief. We connected with so many other families in BC who have children with different amputations, and we learned more about what kind of support the War Amps can offer us. They will help with funding for prosthetic devices, they help advocate for government funding for amputees, and offer parents resources for when their child amputee starts school or learns how to drive, etc.<br />
We’ve also connected with The Lucky Fin Project, which is a non-profit located in the states for kids with limb differences. The Lucky Fin community has been absolutely incredible, and I feel grateful to be a part of it. We have connected with so many families who are on a similar, if not the same, journey, and in June <a href="tel:+442020">2020</a> we are actually flying out to Michigan for the Lucky Fin Project Weekend, where we will get to meet so many of the families we’ve connected with online. I hope that Ivy is always proud of her lucky fins, the way I am!<br />
We do receive local support from our Child Development Centre, where Ivy sees an occupational therapist, a physiotherapist, and a paediatrician. They offer home visits, programs like a weekly gym social for kids under 5 who are not yet mobile, where they can play with occupational therapists, and they’ve loaned us equipment for Ivy like a specialized high chair.<br />
There are more resources and support out there— so many more that I can list. I was worried that Ivy’s level of amputation was so rare and that I would feel so alone in this journey, but that has not been the case. We’ve truly made so many incredible connections and I already feel like we’re a part of a whole new family.<br />
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What are the positives about your daughters limb difference?<br />
Definitely the community that we’ve been so generously welcomed into. The parents I’ve met are amazing with their support and encouragement, and its an honour to watch their little kids with limb differences as they grow and thrive. The Lucky Fin family is truly a <i>family</i> and I feel lucky to be a part of it. The disability community in general has been such a warm, welcoming community. It has challenged my preconceived notions of what it means to have a disability, and I’m grateful that its changed my perspectives and educated me. I feel like my first daughter made me a mother, but Ivy has made me the mother I was meant to be, and that has been truly magical. I know she is going to teach me so much about determination, resilience, perseverance, and strength. But she’s also just a normal baby who loves to laugh, smile, and be tickled, who hates sleep and hates broccoli. Regardless of her abilities, I love her and she has completed our families beyond my wildest dreams.<br />
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What negatives have you encountered?<br />
Honestly, there’s really only one negative, which is shocking to me because when I first found out about Ivy’s limb differences, I was terrified. I was worried about her quality of life (thanks to the doctors who told me that she would have no quality of life), I was worried about how she was possibly going to do things like take care of herself, draw, tie her shoes, and live a “normal” life. Now, even though she’s only 11 months old, I can honestly say I’m not worried about any of that. She’ll figure out a way to do things, and it may be different, but she’s perfectly unique and I love that about her. But even if she does run into things that are challenging or that she can’t do, it doesn’t matter. It just doesn’t worry me. I think she’s perfect just as she is, and i don’t know what I was so worried about before!!<br /><br />That being said, the one thing that does worry me is how other people are going to make her feel. I know that every day for the rest of her life, she will deal with the stares, the comments, questions, kids pointing, and I’m sure that at some point kids will be mean and make fun of her. This is what I dread. I don’t want her to ever doubt herself, I don’t want her to doubt her place in our family or her place in this world. I hope she always knows how perfectly made she is and how loved she is. It terrifies me that someone could potentially have the power to make her doubt any of this. So hopefully as a mother, I can instil in her the confidence and strength that she will need to just shrug off the comments, questions and stares. I will try my best to teach her that it doesn’t matter what others think, but it’s still a reality that she will have to deal with these issues, and I’m sure at times it will become exhausting and frustrating. But I am hopeful that my love will be enough to let her know that she is perfect in every single way, and that she is so so so loved.<br />
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Has your daughter needed to have any procedures?<br />
Not at this point. We have met with a paediatric orthopaedic surgeon, and we will continue to have follow-up visits as she grows. The surgeon is hopeful that after weight-bearing on her left leg and learning to walk, her left hip will straighten out on its own, but if not, then she will need surgery around the age of three. At the age of 5, depending on her left femur’s growth, there’s the possibility of leg-lengthening surgery. I’m trying not to worry too much about these options, as they are both in the future and not certain at this point. It all depends on how her legs grow! We are getting her a lifted shoe at the end of the month so that will hopefully help her as she learns to stand and walk!<br />
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What is the best advice you could give to a family who are pregnant, or have just had a baby with limb difference?<br />
My best advice would be that its okay to feel all of the emotions. Its okay to grieve— while your baby will never feel “loss” because they were born that way, you as a parent feel that loss quite intensely. The baby you envisioned is in fact quite different. Sometimes I feel guilty for the feelings and emotions I experienced, but I have to be gentle with myself and remind myself that it was all part of the process. It took me months to process those emotions, to heal, to accept, and to start to feel hope. It wasn’t until she was born that I finally started to feel like things would be okay. Now, I wonder what all the worry was for, and I wish it hadn’t been so hard to bear the news of her limb difference, yet it was. It was incredibly hard. It was real, raw, and heartbreaking. I felt fear, sadness, anger, denial. I didn’t understand why this was happening to us. But those months of processing did wonderful things for my heart— it prepared me for her arrival, it strengthened my resolve as a mother, and my love for Ivy increased beyond what I thought possible.<br />
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My second piece of advice would be to reach out. Seek those connections with other parents who are on a similar journey, and seek that community. It’s out there, I promise. It may be hard to find at first, because you don’t know where to look, and if you’re like me, you didn’t even know that some babies were born missing limbs. It wasn’t in the realm of possibilities when you imagined your pregnancy and tiny little one. But it is the most inclusive, diverse, kind, accepting community I’ve ever been welcomed into, and I’m honestly happy and grateful that we’re a part of it. I’ve made some incredible connections with other parents, and I can’t wait to meet them in person. I know that over the years, they will become family.<br />
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What advice would you give a kid with a limb difference?<br />
I’m not sure that I’m the right person to give advice to someone who is born with a limb difference, because I’ve never walked in their shoes. I don’t know what its like to have a limb difference. I only know what its like to be the parent of a child with a limb difference. But if i could say anything, it would be what I want my daughter to know: that you are absolutely perfect, just as you are. You are whole, you are complete, you are unique, you are perfect. You aren’t missing anything. You have a very important place in this world, and you are here for a reason. And I hope you never feel ashamed of your limb difference and never feel the need to hide, because you are exquisitely, wonderfully made. I wouldn’t change you for the world. <3<br />
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instagram: @vanessamcleod_<br />
blog: <a href="http://growlikeivy.com/">growlikeivy.com</a> </div>
afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-8584147377979294292019-08-02T13:41:00.000-07:002019-08-02T13:41:45.458-07:00Amelias Story<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Tell me a bit about you?</span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">My daughters name is Amelia and she’s 2.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC37ax7D53eSiq9fkYsVVDXW6oPDNtS5wNq0yQ4U7I1x-DKMHOqFC-ZbDxTCGYaB0tlZJXyN19fhrQVklvezf3Y_dpsQAmgKYb8XcLMIm9UUyxfm5FRgL5MWTQ4kuDvx5fNjjuTXKIVQE/s1600/35518909_1026598074172607_6062187673622151168_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC37ax7D53eSiq9fkYsVVDXW6oPDNtS5wNq0yQ4U7I1x-DKMHOqFC-ZbDxTCGYaB0tlZJXyN19fhrQVklvezf3Y_dpsQAmgKYb8XcLMIm9UUyxfm5FRgL5MWTQ4kuDvx5fNjjuTXKIVQE/s320/35518909_1026598074172607_6062187673622151168_n.jpg" width="320" /></a></div>
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<span style="background-color: #fcfcfc; color: #666666; font-family: "arial"; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"><br /></span></div>
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<b id="docs-internal-guid-119cf9fa-7fff-45cf-5d71-ad51e44eeb33" style="font-weight: normal;"><br /></b></div>
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<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">What is your limb difference?</span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">She has about a 50% discrepancy and it’s currently 10cm, </span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">projected at full growth is 23cm. </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCno_scUhlC8kqa1lnjL5BsDbjJbs9IKDS1J2KoLWHe8rFDNAkzwYqs7HNDAIcucJOiRxnhYTL8_EPqkOCJuHHOgHuT2ob4mBfxu5d0oHmDTUVVp0SwAa9LgL7zaPkSnBYbSI_udcYxKw/s1600/39494068_2182726355338072_4498471883095670784_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCno_scUhlC8kqa1lnjL5BsDbjJbs9IKDS1J2KoLWHe8rFDNAkzwYqs7HNDAIcucJOiRxnhYTL8_EPqkOCJuHHOgHuT2ob4mBfxu5d0oHmDTUVVp0SwAa9LgL7zaPkSnBYbSI_udcYxKw/s320/39494068_2182726355338072_4498471883095670784_n.jpg" width="320" /></a></div>
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<span style="background-color: #fcfcfc; color: #666666; font-family: "arial"; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"><br /></span></div>
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<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">When did your parents find out?</span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I found out at my 20 week scan. </span></span></div>
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<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">What help and support have you been offered?</span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">We have been offered support through Sheffield children’s hospital,</span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> of other families numbers to discuss which route we would like to go down. </span></span></div>
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<b style="font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b></div>
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<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">What are the negatives about your limb difference?</span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I’m always scared what the future will hold for Amelia,</span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> and maybe that’s a negative.</span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> Also sometimes the constant questions people ask me when I just want to enjoy days out with my children. </span></span></div>
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<b style="font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b></div>
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<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference?</span></span></div>
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I would tell someone who was pregnant, or just had a baby that your child</span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;"> will surprise you everyday and make you proud. </span></span></div>
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<b style="font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b></div>
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<span style="background-color: transparent; color: black; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Have you needed to have any procedures?</span></span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">We have only recently had Amelia's MRI, </span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">CT scan and fluoroscopy which was under general anaesthetic. </span></span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-size: 12pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "arial" , "helvetica" , sans-serif;">After this we will be booked in for her hip surgery.</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Instagram: <a href="http://www.instagram.com/">www.instagram.com/</a></span><span style="background-color: #fafafa; color: #262626; font-family: "arial" , "helvetica" , sans-serif; white-space: nowrap;"><a href="https://www.instagram.com/amelia_pffd_journey/" target="_blank">amelia_pffd_journey</a></span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-83116218339547400932019-07-31T10:37:00.000-07:002019-07-31T10:37:57.354-07:00Jades Story<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: "roboto" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Tell me a bit about you?</span></div>
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<span style="background-color: transparent; color: #666666; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> I’m Jade, I’m a mum of 3 from Yorkshire. I have a 5 year old son, and daughters aged 3 and 10 months!</span></div>
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<span style="font-family: "roboto" , sans-serif; white-space: pre-wrap;">What is your limb difference?</span></div>
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<span style="background-color: transparent; color: #666666; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">My youngest daughter Ottilie has a condition called PFFD, this means her right femur is shorter than it should be. It also normally affects the knee and hip. </span></div>
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<span style="background-color: transparent; color: #666666; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We found out when Ottilie was around 6 hours old! The midwife was doing the newborn checks on her as we were desperate to get home and introduce Ottilie to her big brother and sister. Unfortunately this went out the window when they realised her leg length difference and we had to stay in hospital for 3 nights whilst she was tested for all kinds of things (limb differences can also be markers for other conditions such as Down’s syndrome). It was so hard seeing the X-ray she had done on the day she was born, clearly showing her shorter bone, which was also curved(quite typical with pffd). </span></div>
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<span style="background-color: transparent; color: #666666; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The staff in the hospital Ottilie was born in were amazing. Nothing was ever too much trouble, and they really looked after us well. In fact my friend is a midwife there and she still gets other members of staff that looked after us asking how we are! We’re now under Sheffield children’s hospital who have also been great so far. I’m a member of a couple of limb difference Facebook groups as well. They have been invaluable, especially at the beginning when everything was so new to us. </span></div>
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<span style="background-color: transparent; color: #666666; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">This is a bit of a tricky one, as obviously Ottilie is still only young, but one of the positives we’re already seeing is just how determined our baby girl is. She is already crawling, as well as pulling herself up. She finds her own ways of doing things and owns it! Another positive has been the way this whole new world has been opened up to us. I’ll admit that before we discovered Ottilie’s condition, I was pretty uneducated when it came to limb differences. Now it’s brilliant to read all these stories of people with varying disabilities, and the way they’ve overcome them. </span></div>
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<span style="background-color: transparent; color: #666666; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ottilie hasn’t needed any procedures yet, but she will do, over the course of the next 15 years or so. Firstly, she will most likely need a hip reconstruction in around 1 years time. She will also need a knee operation in the next coupe of years too. Then over the next 10 years she’ll undergo around 4 leg lengthening operations, where she’ll be fitted either with a frame around her leg, or magnets inside. Her leg can be very very gradually lengthened because of these.</span></div>
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<span style="background-color: transparent; color: black; font-family: "roboto" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference?</span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-family: "roboto" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Don’t be afraid to be sad at first. I was quite low after Ottilie was born. It was like I was grieving this perfect baby I’d imagined arriving. But Now I see my amazing baby girl, and see how determined she is. </span></div>
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<span style="background-color: transparent; color: black; font-family: "roboto" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">What negatives have you encountered?</span></div>
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<span style="background-color: transparent; color: #666666; font-family: "roboto" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Like with the positives, it’s hard to think of many negatives we’ve come across as Ottilie is still so small. I suppose one of the negatives for me is worrying about the future. How much pain will she be in after her operations? Will she hate us for letting her go through them all. I also struggle when well-meaning people say things such as “ooh, she’ll be running around soon enough!”. People mean well, they really do, but it does get to me from time to time.</span></div>
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<span style="background-color: #fcfcfc; color: #666666; font-family: "roboto" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Do not be afraid to be different! Get as much support as you can, know that everyone has your best interest’s at heart.</span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-89676333869977421982019-07-20T13:54:00.000-07:002019-07-20T13:54:29.910-07:006 Things I have learnt so far in 2019<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">We are now 7 months into 2019, so I have decided to look back at the past 7 months and pass on a few things I have learnt .... I must admit, turning 30 has been a hard one. I' m not feeling it and I usually LOVE birthdays ... but I reckon this year might eventually be on to something.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">1) Its okay to sit still - and I don't mean literally sitting still. I mean being able to just take each day for what it is. This year I have decided to do a 'No change year'. I have this annoying habit of having a need to keep busy, do things, take on extra things, have babies, get a pet, move house etc ... and I decided with the help of my friends to try and stop these habits. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Oddly I felt that changing something would make things better. Most of the time I wasn't really sure what I was trying to make better, but I had a feeling inside that something NEEDED to change. Little did I know that doing the opposite works even better.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Don't get me wrong it has been SO hard to stop myself from entering a comfortable rabbit hole of changing something. I have felt like I have needed to sit on my hands, or re-direct my energy onto something else - something more positive. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In my case it has been exercise, going for walks, redirecting my energy into my family, budgeting, making future plans - I bet some of you are thinking these are normal bits and bobs to do, but for me some of them felt like extra things, not everyday things.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For example my husband and I have made a 'want list' of the things we want to do, whether it be big dreams like extending the house or small dreams like getting some garden furniture (in the sale obviously). Writing it down seems to be working pretty well, it is almost like my mind has brain dumped all the things I feel I should be doing, to turning it into a family project and taking the pressure off.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(Picture from Longleat centre parks spa .... birthday treat from some fab friends for some much needed me time with one of the closest and oldest friends)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">2) You can exercise for fun or just because! I have only ever really exercised to help 'look' a certain way. Granted I never got there and would always feel deflated that it hadn't worked within 2 weeks. Nowadays, I enjoy going to the gym for me. It is my time to focus on myself, and I am really enjoying it. I have no expectations of losing weight or fitting in a certain size ... it is literally for fun. Sometimes exercise consists of attending a stretch class ... which is pure bliss and relaxing.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(Okay, so I don't have any photos of me exercising, but surfing a friend is just as good eh?)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">3) You can learn so much from your kids or other peoples children - their minds are mind boggling and I find it annoying but so insightful when my daughter asks 'Why?!' ... mainly because answering 'just because' is never enough. She has got me really thinking about why we do what we do. Its amazing but also frustrating. I realise how much we just do things, as thats what we are taught and what is expected ... a lot of the time I can't even explain why .. which just gets me thinking.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">4) It's okay to accept feeling guilty and leave it at that - Since finding out about my sons foot everyone knows I have been feeling guilty about it. I know in equal measure it is not my fault his foot didn't develop properly, just as much as it's not my fault that my kids didn't make the magic 37 weeks mark in pregnancy. And you know what? I have actually accepted I will feel guilty about his foot. I completely accept it for what it is, I know it wasn't my fault and thats okay. I always felt like i had to get passed the guilt feeling, and 'move on' but I think this is me moving on. I have moved passed just feeling a negative feeling towards guilt and his foot, to just feeling okay with it. It doesn't eat me up, I do not have days where I feel gloomy about it, but I just feel like it is a normal feeling now. And to me that is great!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">5) I am starting to learn a bit more about how to be a bit more environmentally friendly this year, I've just been looking into re-usable nappies, reusable make up pads, not buying bottled drinks when out, using different stuff for laundry (there are these eco balls we are going to try when we run out of detergent). I've been following a few good eco friendly accounts on instagram and taking note of taking my re-usable coffee cup out. We are still very very early in our journey into this but I am looking forward to seeing if these little changes will have had a good effect in 10 years time.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This is a recent buy, which actually works and I love:</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52_EpFK03rLZnw1zryX5GjjfvEUSftU7zG8qwT73AAce7zlayQisub_9NR6OzowteUeJiCE6wDBdpaBP-a2s0aYzP-usyBRUOqISUTrHoruvEZbH9cc2ztP45qoTuxChgnmuPvIBMShU/s1600/its+magiv+cloth.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="425" data-original-width="425" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52_EpFK03rLZnw1zryX5GjjfvEUSftU7zG8qwT73AAce7zlayQisub_9NR6OzowteUeJiCE6wDBdpaBP-a2s0aYzP-usyBRUOqISUTrHoruvEZbH9cc2ztP45qoTuxChgnmuPvIBMShU/s320/its+magiv+cloth.jpg" width="320" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Click <a href="https://www.amazon.co.uk/W7-MAGIC-Make-Remover-Cloth/dp/B01LY5OD9J/ref=asc_df_B01LY5OD9J/?tag=googshopuk-21&linkCode=df0&hvadid=309950308787&hvpos=1o1&hvnetw=g&hvrand=5233976038929222141&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9045753&hvtargid=pla-332336237161&psc=1&th=1&psc=1" target="_blank">HERE</a> for the Amazon link.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">6) Its okay to not spend money - Its been well publicised that we are a generation who like to spend, spend fast and want things right now. And I must admit, I completely agree. It has taken me ages to accept going out for a coffee can be a treat and not an every day, or a few times a week thing. Luckily a lot of my friends enjoy a walk, or cuppas round each others houses. I have noticed a fair few people doing a 'no spend year', I' m not entirely sure I would have the will power to not spend on anything, but the concept is quite cool and I'd imagine it would change how you think about spending money.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have read a book called 'Get your sh*t together' by Sarah Knight and it's a brilliant read to just change how you think about spending money, saving, jobs and just life in general.</span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-55670598792186544762019-07-13T04:49:00.000-07:002019-07-13T04:49:14.264-07:00Kimberley's Story<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">Tell me a bit about you/your family?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b id="docs-internal-guid-f099c388-7fff-43b2-deba-71ddbf2ee881" style="font-weight: normal;"><br /></b>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Our family is made up of me, Kimberley, my partner, John, and our son, 14 month old Thomas. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We also have a crazy dog called Harper.</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">What is your/your childs' limb difference?</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Thomas has left foot talipes, also known as clubfoot. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBs1YPMOvNRWyYeOr9OKhI5JCtzkvvCYv66fJD6m8v_-9fPagKNyIXjEUGr8hGh-uSk-pw72O3YCNS8juiQtWTqrrOKNjak5XEIk5p0MBeDh-JlXEZPzR4VDFBHEwdkzWUR60Y9e9msA/s1600/35922388_193545954815048_2614841742674886656_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="960" data-original-width="714" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBs1YPMOvNRWyYeOr9OKhI5JCtzkvvCYv66fJD6m8v_-9fPagKNyIXjEUGr8hGh-uSk-pw72O3YCNS8juiQtWTqrrOKNjak5XEIk5p0MBeDh-JlXEZPzR4VDFBHEwdkzWUR60Y9e9msA/s320/35922388_193545954815048_2614841742674886656_n.jpg" width="238" /></span></a></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">When did you/your parents find out? </span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We found out during an antenatal scan. Would have been around the 16-18 week mark. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">What help and support have you been offered?</span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">When we found out originally at the scan, the information we got was extremely limited. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">The staff said that he may just need a couple of casts, bit of physio. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">They seemed quite dismissive of it. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We didn’t realise the extent of treatment until after Thomas was born,</span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> and we met with his first orthopedic consultant. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">What are the positives about your/your child's limb difference?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b style="font-weight: normal;"><br /></b>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Everything that involves his beautiful little feet is just that bit extra special. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Watching him crawl for the first time reduced me to tears and the same again when he started walking</span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> along furniture and most recently using his walker. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">There are times as a parent to a child with complex talipes that you wonder how they will manage,</span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> adapt and cope. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Your mind is constantly worrying about if they will walk properly and be able to do the same as all their friends. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">So when you see them doing those ‘normal’ things, </span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">to you as the parent, they really do make your heart soar with pride. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYR0BAAO47Xg-bD_G4DsMMAmmbfqY66JJl-Ca9NwSTla4gQS9qEspFrzauuom4jNBodslD1X8KW_GivHvrEBdWLY7TldUqfv0gYgV0NxAILBlscJtNi3V33qXO2Nak5awcaBLiuUNF6pM/s1600/56800690_392653624904279_7640086799074721792_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYR0BAAO47Xg-bD_G4DsMMAmmbfqY66JJl-Ca9NwSTla4gQS9qEspFrzauuom4jNBodslD1X8KW_GivHvrEBdWLY7TldUqfv0gYgV0NxAILBlscJtNi3V33qXO2Nak5awcaBLiuUNF6pM/s320/56800690_392653624904279_7640086799074721792_n.jpg" width="320" /></span></a></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">What negatives have you encountered?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><b style="font-weight: normal;"><br /></b>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">It’s been a difficult journey. Watching casts being put on your child is scary and overwhelming. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">You all have to adjust as a family. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Then there are the comments - we had so many people, including professionals, </span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">ask ‘what happened’ when they saw Thomas’ cast. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We always made sure our reply started with ‘nothing happened, he has talipes’. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">People can be very judgemental but we do appreciate for a lot of people that it’s something they haven’t seen before</span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> and are blissfully ignorant to. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Then we found treatment at our local hospital just wasn’t working out. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Casts continuously slipping and then his leg starting to bow led to us researching other hospitals. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We now have an amazing team at another hospital who have honestly been incredible through the whole process. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We have a lot of travelling to do (around 3.5 hours in the car) which can be tiring, </span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">especially when we were going for weekly cast changes. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Thankfully now Thomas doesn’t attend appointments as frequently so the travelling has eased substantially. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;">Have you needed to have any procedures?</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Yes, Thomas required a tenotomy. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">This is where the Achilles tendon is snipped at the back of the heel in order to release the heel, </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">allowing it drop and then subsequently the Achilles tendon </span><span style="white-space: pre;">to grow back longer. </span></span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">The Achilles tendon in clubfoot children tends to be tight and too short </span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">which is why this procedure is required. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">It’s needed to be carried out in around 85 - 90% of children with talipes. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Some hospitals perform it under local anaesthetic but Thomas’ was under general</span><span style="white-space: pre;">,</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; white-space: pre;"> which is also very common. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; white-space: pre;">It was hard taking him down to theatre and watching him go under but he managed it all so well. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre;"> who are pregnant or have just had a baby with limb difference?</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">We didn’t get any advice or even suggestions as to where to go to get more info and support. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> including leaflets about treatment and the condition in general. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">They even have a parent match-up support service where you can be matched up to another family </span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">who have been through what you are about to go</span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> through, and can offer advice, experience and a listening ear. </span><br />
<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">There’s also plenty of brilliant Facebook support groups. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Our favourite is Happy Feet Talipes New*. </span></div>
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<span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">and you will learn how to do things in your own way and your own time.</span></div>
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<span style="font-size: xx-small;"><span style="background-color: transparent; color: black; font-family: "arial" , "helvetica" , sans-serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">Our facebook page for Thomas’ journey is</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: xx-small;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> </span><a href="https://www.facebook.com/Thomas-His-Talipes-Tale-173992910103686/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre;">https://www.facebook.com/Thomas-His-Talipes-Tale-173992910103686/</span></a></span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-89202685512524756832019-07-09T11:23:00.000-07:002019-07-09T11:23:18.693-07:00Petes story<div style="text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So about me I’m 31 years old and married to the most fantastic wife, Anna. We seem to spend most of our free time in the gym or out and about walking with our two maniac dogs. I do quite a bit walking with friends as well (will go into this a bit more in a bit) Work wise - since the age of 20 Ive worked in the Prison Service. For the first 8 of them on the landings as a prison officer and although now I am in a more specialist role I am still operational so still working with prisoners - though theres also a lot more time in an office with a computer too now.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My limb difference is that I was born with a talipes foot. My left foot. Its unilateral (just the one) and the doctors said it was caused by my position in the womb. By all accounts my foot was quite significantly turned in and twisted upside down.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Strangely it turns out my wife’s sister (Ginny) also had the same problem with the same foot when she was born - but I don’t think hers was as severe as mine. Hers was also believed to be positional.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Though the doctors told my mum it was positional my paternal Nan could vaguely remember there being a distant uncle or cousin of hers that had a ‘club foot’ and my maternal Grandma could similarly remember a distant relative who had trouble with their feet their entire life. Though we’ve never been able to verify either of these accounts.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When I was born my mum asked the hospital if a) it would be something that my children would be prone too if I had any or b) if my mum had other children (I’m the oldest of 2) if they would also have the same issue - again she was told no. Both me and Ginny are the oldest of 2 and neither Anna nor my sister were effected with any issues with their feet or legs etc.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Though we haven’t got kids ourselves - or at this time aren’t planning on having any - it is something we have discussed. That there is a possibility that if we were to have a kid they may be born with a talipes foot - though both me and Ginny have been told it was positional, there is always that wonder ‘what if it was a genetic’ thought - especially as there were whispers from grandparents. I realise how this sounds - this isn’t why we haven't had kids and if we chose to have them it wouldn’t stop us - its just something that we would perhaps raise with a doctor.</span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="caret-color: rgb(0, 0, 0);">When did your parents find out?</span> </span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I’ll be honest, I’m not quite sure when my mum found out about my feet - in all honestly I think it was when I was born! And when I discussed it with her briefly earlier in the year she her eyes teared up a bit. From what I can tell she spent however long on the maternity ward that was normal for then and I think she felt the doctors and nurses were all a bit blunt and cold about my foot - telling her that with a few massage techniques it would soon stretch out. as weird as it sounds Its Not something that I have really discussed too much with her - not because it upsets either of us, I suppose strangely its more just because its my normal and not something I have really been bothered about if that makes sense?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The massages she was told to do obviously didn't work so I was put in plaster casts from a few days old (though again I’m a bit hazy in details). I know mum said if i wasn’t in a cast i would have to wear a boot and brace - but the fitting wasn't great and through the night, no matter what she did I would always somehow manage to slip my foot out of it.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It got to the point that there was no real improvement to my foot and so the ‘specialist’ in the hospital (and I know she uses that term loosely) told her that she would have to expect that I would just be a kid that would never be able to walk and would likely need to be in wheel chair for life. She obviously wasn't happy with this and took me back to her Gp who made a referral to alder hey children's hospital. (Just realised I’m conscious in this that I keep referring just to my mum - but it was my dad too!).</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For a bit of context we lived in a little town called Skelmersdale and I was born in the nearest hospital at Ormskirk. I know you likely know - but just in case Alder Hey is in Liverpool. We were really lucky as Skelmersdale is only about 15-20 miles from Alder Hey.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Mum can never praise the staff at Alder Hey enough! Yet again I’m a bit short on specifics but I know by the age of about 2 or 3 Alder Hey had performed about 3 operations on my foot to straighten it - and there was still a lot of boots and braces and plaster casts used - but also physio was given. And up to the age of about 16 I would have to go back twice a year for a check up with a specialist. They were happy to discharge me at 16.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My left foot is about 2 sizes smaller than my right. As a kid my mum used to buy 2 pairs of shoes in different sizes as I would often fall over because of the gap at the front of my left shoe. But as i got older (more teens) i would just stuff the front of my shoe with things like cotton balls etc. Now i just buy one pair and don't really stuff the shoe - it would probably feel strange having so much space to some people but its just normal and doesn't cause me any issues. And my left leg is considerably smaller (in size not length). I think there are two reasons for this - partly because tendons in the calf have been so stretched from my operations - but also i know that I massively over compensate with my right leg to lighten the load on my left - even though its not a conscious decision to do this!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The look of my legs and feet has never bothered me and wherever possible I will always wear shorts over trousers if I can. But that said it has led to some ‘banter’ from mates in the gym about skipping leg day and all that!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="caret-color: rgb(0, 0, 0);"><b>What negatives have you encountered? </b></span> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It has had some negative effect on me. i’m sure it probably goes without saying that my left foot/leg/ankle are a lot weaker than my right and will always tire sooner when I am exercising and I have had to have physio to the left foot and ankle periodically over the years. In my mid 20s i did have to have an operation to my right foot. Partly this was due to an old rugby injury (i played rugby all through my teens and early 20s) but it was worsened by the over compensating with my right foot that I mentioned earlier. Basically the bone in my big toe (probably as far down as level with the ball of my foot) was so badly damaged that they removed it completely replacing it with bolts and screws and pins!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't want it to sound doom and gloom though! As i say - mum was told I would never walk - yet I spent my youth playing rugby. I work as a prison officer and complete a fitness test every year. I do a hell of a lot of walking - as an example I have two pretty major ones planned. The last weekend in June this year I will be completing a 62 mile walk in about 24 hours solid walking. Next year (date tbc as a few things have changed) i am going to complete a charity walk of 140 miles from my house in Leeds to Alder Hey hospital. Though I cant find exact cost - my aim with that is to raise roughly the cost of treatment for a baby now who has been born with similar issues to me as a way if saying thank you to alder hey!</span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="caret-color: rgb(0, 0, 0);">What are the positives about your limb difference?</span> </span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There have been the odd small perks to my foot issues - one being I could use it to get out of PE in school whenever I wanted....strangely my foot would always be hurting when I had football but was fine on days we had rugby! And another small victory was that in work officers are issued the most god awful non slip boots - but they cause so many people problems because they are so cheap! They are also mandatory uniform. Because of my foot problems I don't have to wear them and was issued more specialist patrol boots similar to police or soldiers.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">All i would say to kids and families is don't let it stop you! You’re no different from any other kid and if you want to do something - then you’re more than capable of doing it despite your foot or leg! Sometimes you’ll tire before<span class="Apple-converted-space"> </span> friends or you’ll be in pain - but bare with it. You’ll learn to manage this as you get older! And we all know kids can be cruel - you might get some comments if there are obvious differences from your legs or feet to other kids - but it will never stop you!</span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-11873106819564212692019-01-13T11:18:00.000-08:002019-01-13T11:18:10.993-08:00Third time lucky<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">We have finally had an appointment with the right team (woohoo!). Our appointment was at the Royal National Orthopaedic Hospital, admittedly I had never heard of this hospital before. But after some googling of the hospital, and the consultant we are under I hoped we were finally in the right place ... and we were!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The first surprise when we arrived was that the parking was free ... I mean how many hospital have free parking? ... I work at a hospital and have to pay to park there ... so this almost felt like a late Christmas present. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Obviously I ensured we arrived early (a whole hour early to be exact) and wondered up to the outpatients to check in. Once checked in we decided to go and get a drink to kill a bit of time. I also felt like I needed to keep 'busy' and drinking a nice hot chocolate seemed like the best idea to help ease my nerves and make we feel like I was doing something - feeling anxious is a funny thing isn't it, why does keeping your hands busy help you feel better?! I'm sure there is a proper psychological answer out there.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Our appointment time came about, and we were met by a lovely doctor. I think you can always tell when someone works with children. They seem to have a nice calm, friendly and relaxed manner. He spoke to myself, my husband and interacted with our son as well. Immediately I felt at ease and the next few words that left is mouth made me instantly relax. He said 'Well, just by looking at him I can see he has a congenital abnormality' .... I literally thought 'am I hearing right' 'does he actually have something definite to tell us?'. The other doctors we have spoken to have all been absolutely lovely they just were very clear they had no expertise in this sort of thing. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Anyway after a little examination of his legs (it was felt there might be some discrepancy in leg length), he asked about the scans, his birth, how he had been. He asked a question that I didn't think would be important, but after speaking and sharing other parents experiences I definitely think it is. He asked 'did you know about his foot before or was it a surprise?' - not the most medical of questions but actually, probably one of the most important. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">After the examination we were sent off to x-ray ... my son loved it. Loads of men and women to talk to and smile at. He even made a point of leaning right over to 'read' the magazine of the lady next to us. Kids do have this magical way of making the unordinary just seem super normal don't they. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Anyway, back to the consultant we went. On the x-rays he measured his femur and tib and fib length. There was marginal difference, and therefore he concluded that the leg length is the same - such relief. I had been so scared he would need leg lengthening surgery or whether having shorter bones in one leg to the other would mean more problems later on in life. I hadn't googled any of this as I didn't want to read all the worst case scenarios. His heel pad is smaller, which is whats probably making the discrepancy when he stands. He definitely has a heel and ankle bone. The consultant is certain that he will walk on it - when, he doesn't know. It will be when he is ready and has figured out how to use it. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">There doesn't seem to be any need for any sort of surgery unless we run into any functional problems later on down the line. His little foot does have a sort of 'name' - its called a Boyd amputation. Its not exactly what he has but it is similar. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">What does this mean now? Well, we have been referred to a specialist in prosthetics and amputations to help make the decision as to whether he needs orthotics or prosthetics. Within this referral comes physiotherapy - something I thought we might need. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As far as genetics go, he is happy for our GP to refer us (and if they are not, he is happy to write the letter). Again, we knew about probably needing genetics but nothing has come of it yet. This would be to find out if he has something or whether future pregnancies could have limb differences (don't get to excited the Aunty Emmas', its more for him than us 😀). </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So this is where we are, we are not under the right hospital and team and we will be seen in due course. I'm not sure I would have been able to tell you what I was expecting from the appointment, but I think the above pretty much sums yup what I would have liked to have heard. </span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-41439521823566527882019-01-10T05:24:00.000-08:002019-01-10T05:24:20.367-08:00Limb difference charities <div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">After my second 20 week scan and it being confirmed that my son would have a single digit on his foot and now other complications they could see, we were given information for the charity REACH which is for upper limb differences ... I guess you can see the problem there?</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The ironic thing is it took me a while to want to look through that information and by the time I was ready to look into this world, I didn't even have the right information to start looking for advice and support.</span></div>
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<b id="docs-internal-guid-dc8b6f92-7fff-9bb2-5f91-4a5d43bbeb51" style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">So, I have decided to try and put a bit of an information list about websites for various limb differences. It'll mainly focus on the UK but will have some websites from America.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">----------------------------------------------------------------------------------------------------------------------------------</span></div>
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<span style="-webkit-text-decoration-skip: none; background-color: white; font-family: Arial; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 700; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><span style="color: orange; font-size: x-large;"><br /></span></span></div>
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<span style="-webkit-text-decoration-skip: none; background-color: white; font-family: Arial; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 700; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><span style="color: orange; font-size: x-large;">⇨REACH⇦</span></span></div>
<b style="-webkit-text-stroke-width: 0px; background-color: orange; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></b>
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<span style="background-color: orange; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">REACH is a charity for children with upper limb differences. Their website has a members options, which helps you gain access to plenty of support and advice, meet ups, burserys, fundraising ideas and the bit i adore is that you can buy dolls with upper limb differences - I mean how incredible! </span></div>
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<span style="background-color: orange; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Their website starts from the early days upto school and learning to drive </span></div>
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<b style="-webkit-text-stroke-width: 0px; background-color: orange; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: orange;"><span style="color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Website: </span><a href="https://reach.org.uk/" style="text-decoration: none;"><span style="-webkit-text-decoration-skip: none; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://reach.org.uk</span></a></span></div>
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<span style="background-color: orange;"><span style="color: black; font-family: Arial; font-size: 12pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Contacts: </span><span style="color: black; font-family: Arial; font-size: 12pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">0845 130 6225 or 020 3478 0100</span></span></div>
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<b style="-webkit-text-stroke-width: 0px; background-color: orange; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: orange;"><span style="color: black; font-family: Arial; font-size: 12pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The link below also links to other places for further information, including hospitals that specialise in upper limb differences: </span><a href="https://reach.org.uk/places-go-information/" style="text-decoration: none;"><span style="-webkit-text-decoration-skip: none; color: #1155cc; font-family: Arial; font-size: 12pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://reach.org.uk/places-go-information/</span></a></span></div>
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<b style="-webkit-text-stroke-width: 0px; background-color: orange; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: orange; color: black; font-family: Arial; font-size: 12pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">On the website there is a link to blogs of fellow upper limb difference parents, they are beautifully written and worth a read. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLIx7i-u0MqOVbzNOqhPG0riN2AfxQc25mbUVRBoog6TJNzUTIo7-8WTm781OEyBtwmDcGtOvRT01KphogFD7TsQuMvR5LPCOm2CkM9vXos5uyoNF0o3wwvlDElUBhbl3fX1zoKqLJMxE/s1600/REACH.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="224" data-original-width="224" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLIx7i-u0MqOVbzNOqhPG0riN2AfxQc25mbUVRBoog6TJNzUTIo7-8WTm781OEyBtwmDcGtOvRT01KphogFD7TsQuMvR5LPCOm2CkM9vXos5uyoNF0o3wwvlDElUBhbl3fX1zoKqLJMxE/s200/REACH.jpg" width="200" /></a></div>
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<span style="background-color: white; color: black; font-family: Arial; font-size: 12pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">--------------------------------------------------------------------------------------------------------------------------</span></div>
<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b><br />
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<span style="-webkit-text-decoration-skip: none; background-color: white; font-family: Arial; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 700; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #134f5c; font-size: x-large;">⇨STEPS⇦</span></span></div>
<b style="-webkit-text-stroke-width: 0px; background-color: #134f5c; caret-color: rgb(0, 0, 0); font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: #eeeeee;"><br /></span></b>
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<span style="background-color: #134f5c;"><span style="color: #eeeeee;"><span style="font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">STEPS charity was set up by a mum whose son was born with clubfoot, she realised that families with children with lower limb difference had nowhere to turn. This is where STEPS was born and is dedicated to help individuals with lower limb differences. They cover a huge range of conditions such as; hip dysplasia, talipes, club foot, PFFD. I have linked below where to go to to find out what they cover: </span><a href="https://www.steps-charity.org.uk/conditions/" style="text-decoration: none;"><span style="-webkit-text-decoration-skip: none; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://www.steps-charity.org.uk/conditions/</span></a></span></span></div>
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<b style="-webkit-text-stroke-width: 0px; background-color: #134f5c; caret-color: rgb(0, 0, 0); font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: #eeeeee;"><br /></span></b></div>
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<span style="background-color: #134f5c;"><span style="color: #eeeeee;"><span style="font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Each one talks about treatments, causes, and an explanation of what they are and what it means for the child. They even have a ‘personal stories’ section to do with the above conditions that you might find helpful to look there. Here's the link: </span><a href="https://www.steps-charity.org.uk/steps-stories/personal-stories/" style="text-decoration: none;"><span style="-webkit-text-decoration-skip: none; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://www.steps-charity.org.uk/steps-stories/personal-stories/</span></a></span></span></div>
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<b style="-webkit-text-stroke-width: 0px; background-color: #134f5c; caret-color: rgb(0, 0, 0); font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: #eeeeee;"><br /></span></b></div>
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<span style="background-color: #134f5c;"><span style="color: #eeeeee;"><span style="font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">They also have a youtube chanel: </span><span style="-webkit-text-decoration-skip: none; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><a href="https://www.youtube.com/user/stepscharity/videos" style="text-decoration: none;">https://www.youtube.com/user/stepscharity/videos</a></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVf06LHOhSbkE3dXiLTTKC712CVM_SIbOGLBVGpSGvOTTtK2HzTMsMyzL7TRNW7GbrlcYcShJDFrq5FGP6tOi_IcvY7RmGrAivojNILDanP5GydsGGvabhnD9cLqOg7oaeCbSEo4U2TWk/s1600/STEPS.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="124" data-original-width="406" height="97" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVf06LHOhSbkE3dXiLTTKC712CVM_SIbOGLBVGpSGvOTTtK2HzTMsMyzL7TRNW7GbrlcYcShJDFrq5FGP6tOi_IcvY7RmGrAivojNILDanP5GydsGGvabhnD9cLqOg7oaeCbSEo4U2TWk/s320/STEPS.png" width="320" /></a></div>
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b><br />
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">--------------------------------------------------------------------------------------------------------------------------</b></div>
<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b><br />
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<span style="-webkit-text-decoration-skip: none; background-color: transparent; color: black; font-family: Arial; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 700; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">⇨LUCKY FIN PROJECT (LFP)⇦</span></span></div>
<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">This was the first limb difference charity i came across on instagram. If you have read my blogs you will know it took me a while to feel ready to delve into the world of limb difference, and i found it easier to just see images of happy, healthy, beautiful, real life children. I messaged them and i had a reply really quickly. She started this website as her daughter was born with Symbrachydactyly, and the name ‘Lucky Fin’ came about and i must say, i love it. Just the name is so positive. Here's the link to the website: </span><a href="https://luckyfinproject.org/" style="text-decoration: none;"><span style="-webkit-text-decoration-skip: none; background-color: transparent; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">https://luckyfinproject.org</span></a></div>
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There is a fantastic blog section, recurse and information area, recommended reading links. They have books aimed and both adults and children to help inspire those with limb differences. We were very lucky our childminder had some books that she lent us, which i flicked through and showed to my daughter. She was only two, and didn’t really understand it but I felt comfortable knowing that there are books our there to give to children to help them understand their own limb difference or their siblings or friends. </span></div>
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The LFP also has meetups, links families together, raises money through merchandise for the charity. </span></div>
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">They are based in america, but there is still plenty of helpful information. Here’s the link: </span><span style="-webkit-text-decoration-skip: none; background-color: transparent; color: #1155cc; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><a href="https://luckyfinproject.org/links-resources/" style="text-decoration: none;">https://luckyfinproject.org/links-resources/</a></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ4EMyFWTQVsqNeuyBimqAC3pMZdkLbD9RirgAbFJo_7yAvzZqFhDvamrBazOnst0TxDahEhqMdBSGscVLmTRUBO0uheApV_tQDeJMENKB797TtTq4-lY7p1Mh1VqM96rocQSOMxksLyE/s1600/LFP.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="210" data-original-width="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ4EMyFWTQVsqNeuyBimqAC3pMZdkLbD9RirgAbFJo_7yAvzZqFhDvamrBazOnst0TxDahEhqMdBSGscVLmTRUBO0uheApV_tQDeJMENKB797TtTq4-lY7p1Mh1VqM96rocQSOMxksLyE/s1600/LFP.jpg" /></a></div>
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">--------------------------------------------------------------------------------------------------------------------------</b></div>
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<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b>
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<span style="-webkit-text-decoration-skip: none; background-color: transparent; font-family: Arial; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 700; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><span style="color: #351c75; font-size: large;">⇨FINDING YOUR FEET⇦</span></span></div>
<b style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-family: -webkit-standard; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;"><br /></b>
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<span style="background-color: #674ea7;"><span style="color: #cccccc;"><span style="font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">FYF is a charity aimed at helping individuals with amputations, congenital abnormalities. This covers adults and children, and their focus is on inclusion especially with sports. Theyr are based up in socland and leeds (where the sports events and meetups take place). There’s plenty of news, images, fundraising and celebrities to have a look through on their website. Here’s the links: </span><span style="-webkit-text-decoration-skip: none; font-family: Arial; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;"><a href="https://www.findingyourfeet.net/" style="text-decoration: none;">https://www.findingyourfeet.net</a></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeEObmRy9ngb0OoP4p4IRM2sa3C7j-n2oPfrbUnvMXWtvUsDALwamZonPRGpJ11K2JXPuD_GA26wJYiTDDcoULD7U9PS2qbiYWt4Tsy8hewP1jI3FMJjlmyaB57-Vr-8S-CGSLuCovbRU/s1600/FYF.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="225" data-original-width="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeEObmRy9ngb0OoP4p4IRM2sa3C7j-n2oPfrbUnvMXWtvUsDALwamZonPRGpJ11K2JXPuD_GA26wJYiTDDcoULD7U9PS2qbiYWt4Tsy8hewP1jI3FMJjlmyaB57-Vr-8S-CGSLuCovbRU/s1600/FYF.jpg" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Well I hope some limb difference families and people have found this helpful - whether you are just starting your journey following an antenatal scan or learning to live with life as an adult. please get in touch if there are any other charities or foundations out there.</span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-55210879982756515132018-11-06T11:23:00.000-08:002018-11-06T11:23:39.291-08:00So your 20 week scan didn't go as you thought, what now?<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I've been thinking a lot recently about how I felt finding out at 20 weeks that something was different with my baby. I have a lot of lovely friends who are expecting, and have had their 20 week scans, or are due. Admittedly I have been anxious leading up to their scans, and wait for messages about how it went. Rationally I know the chances are slim that anything will be wrong with their little babies, but I can't help but feel that odd pang of anxiousness for them.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Initially I felt a bit silly feeling like this, and a little uncertain as to why I was getting that feeling of anxiety wash over me every now and again, knowing that the scans are coming up. I have now put it down to the fact that I just care a lot about my friends and their babies, and I just don't want them to feel that feeling of complete despair that your body has somehow let you down, you have done something wrong, the 'it could be worse' feeling that your just not ready to feel positive about. The weird feeling that you have to 'break' the news to everyone and add the words 'but everything else is okay, but we need to be referred to the specialists'. Its just something you never expect to say when your pregnant.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The part I found the hardest was finding support, it did take me a while to want to be able to find the support, and feel ready to dive into a world I knew nothing about. So I thought id write a few blogs about limb difference support groups, but I think I'm going to start with a sort of 'top tips' of trying to muddle through your feelings. This is how I personally felt able to cope/rationalise/accept how I felt, this is by no means professional advice but it might help someone else, whether they are in the same or different situation. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">1) Its okay to cry, and to cry a lot. Don't beat yourself up by thinking other people have it worse, or what ever has been picked up at your scan isn't a big deal. Because it is a big deal. It is a big deal to YOU and anything that is different about your baby feels massive. when we were first told, I literally burst into tears and could not stop crying, no matter how hard I tried. Every time I opened my mouth to speak or ask a question I would just cry more. It was very bizarre and out of my control.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">2) Its okay to automatically go to feeling guilty, but only let it be a visitor. Don't let the feeling of guilt consume you and leave you feeling depressed. Even if it is Genetic, and yes it comes from you but you didn't ask to have it or to pass it on to your children.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">3) Its okay to only tell those you want to, and to ask them not to tell others. You might find you feel extremely protective about the whole situation, and almost like you want to keep those words and feelings safe. My son is my second child, and I remember feeling protective during my first pregnancy and it feeling very primal, however this time I felt like a lion protecting my kids from a panther or something. It surprised me just how protective I felt and oddly enough I felt more protective of my daughter, and how it could affect her (if we needed hospital stays, additional care etc).</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">4) Its okay to not be okay. I'll admit I completely fell apart - I just couldn't function. It was very bizarre, I felt like I was in this weird fog, my brain felt like it didn't work, but it felt completely occupied at the same time. I couldn't sleep properly, because I felt wired but I also felt completely exhausted. I felt like I couldn't have a conversation without it feeling like a marathon both mentally and physically. I just felt like a shadow of myself, and if I'm honest I did try and let myself feel it to hopefully move past it. And I did - my doctor signed me off work and it was just what I needed. I just didn't have to head space for work. That 2 weeks made a huge difference - and thats when I started this blog!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">5) Its okay to deal with it differently to your partner. Everyone deals with these things differently and thats totally okay. Try mindfulness books, walking, running, binge watched a series, looking for support, writing, or simply just carry on and deal with it all when the baby is here. There is not right or wrong answer when it comes to dealing with stress.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">6) Its okay to feel overwhelmed. You'll be entering a world of extra scans, specialists, more appointments, more questions, and words you haven't even heard of ... and thats just while your pregnant. Its a whole new world and they are all there for you. Just make sure you take time to digest information, ask questions over and over again, and most importantly talk to your midwife when you need to. You might even have a consultant you can speak to regularly. All of this can simply feel overwhelming, your trying to understand something that might never have crossed your mind. And now your trying to digest it enough to then be able to tell your family and friends what has been said. And don't forget its okay to just say 'I don't remember' or 'I\m not sure' if you haven't processed it enough to explain to anyone. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">7) Its okay to feel disconnected from your baby. As much as I don't want to admit it, I definitely struggled to bond with my bump following the scan. I can't even explain why or how the bond did eventually come. I struggled feeling the kicks, I struggling to think what my baby would look like. I was worried I wouldn't 'like' what my babies foot would look like. I know it is vein to say and some might even say horrible, but we all know what a foot with 5 toes looks like, even though we don't exactly know what the babies will look like. But what does one toe look like? what does a incomplete foot look like?. I knew I didn't want to google what it could look like, I had a feeling it would just show me the most awful pictures and they wouldn't even be what my babies foot looked like. </span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-3058369987050800712018-09-27T00:58:00.000-07:002018-09-27T00:58:10.653-07:00THE appointment<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Evening! If you have been following my blog you will be well and truly aware that I have been super anxious/scared/excited about Mr.N's foot appointment at St. Georges. I just felt like a lot was weighted on this, and it almost felt like everything as we knew it rested on this appointment - dramatic I know!!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, we arrived at our appointment (nice and early of course) and we were seen on time. A 1:30pm appointment kind of made me think we were first on the list following their lunch. Well, let me just say I couldn't sit still with neves, I drink about 1 litre of water and fiddled with Mr. N and his buggy - anything to help me feel busy.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But the appointment went perfectly and better than I had hoped! The specialists were hands, fingers and forefoot specialist, and as he doesn't have much of a forefoot they felt that there wasn't anything that they needed to do. They were happy that he has a heel and even though he doesn't have a big toe, he does have a toe to act as a counter balance - it should strengthen as he uses it more. The difference in leg length they felt was extremely minimal, and he will probably need an insole or orthotic foot type thing. We have been discharged from SGH as they felt our local hospital would be able to support Mr. N enough. We are just waiting for an appointment at our local hospital with the orthopaedic team, but I don't feel as nervous bout this, especially as this means no operations for the foreseeable future woohoo!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The only other appointment they have suggested, is for Mr. N to see the genetics team to just check whether he has something the could pass on to future kids, or if this truly was 'one of them thing's'. As he doesn't have anything else and the foot is an isolated difference, they strongly feel that it isn't genetic but for future kids it could be helpful for him to know for definite.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, basically I have been on cloud nine! I am super happy that we can just keep going as we are, and just wait for these appointments to come through. He is so little at the moment, that there probably isn't much they can do anyway.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A little up date on how my little lad is doing - he is smiling, cooing, laughing, chatting, he absolutely loves watching his sister and finds his dad absolutely hilarious! He tends to be quite happy playing on his playmat, having a bit of tummy time, but loves sitting on my lap and having cuddles :). He is rolling from side to side but hasn't quite figured out how to get all the way over yet. </span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-32433531820309366152018-09-21T11:48:00.000-07:002018-09-21T11:48:02.313-07:00Tiffany's Story<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Meet Tiffany a fantastic mum to 3 beautiful children, this account is truly honest and inspiring and I can resonate with some of these feelings. It honestly brought a tear to my eye!</span></div>
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">Tell me abit about you?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My name is Tiffany, I'm the mother of three beautiful little red heads. Keegan is 7 - he's my brilliant mind, always building legos or reading a book. Addy is 5 - she's my adventurous spirit, usually found twirling in some kind of a dress, and angling to get into mama's make up. Ollie is 17 months old and currently obsessed with his newfound freedom of walking, all things outdoors, and his big brother and sister. </span><br />
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What is your limb difference?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My daughter Addy was born with Symbrachydactyly on her right side. It caused her forearm to be shortened and she does not have a wrist or hand on that side. She has little tiny "nubbins" that would have been fingers that she can wiggle. We call it her "lucky fin" as this makes it easy to explain to curious children. </span></div>
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">When did your parents find out?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Addy's limb difference was missed on ultrasound when I was pregnant, it was never detected. To say we were shocked when she was born would be the understatement of the century. My husband was serving in Afghanistan at the time, making an already emotional situation even harder. I was scheduled for a repeat C-section, and thought I knew what to expect. The minute she was born they lifted her up and I looked right at her face. "She's here!", I said so my husband who was on FaceTime could hear as I knew there was a bit of a delay. My father, who was with me in the operating room immediately began asking questions about her. I can remember him saying "Is she okay?" The nurses who were cleaning her up kept saying she was okay, I could hear her crying and just assumed he was checking on her...but he kept asking. Over and over he asked if she was okay. The doctor who delivered her even said she was okay. It was then that I looked over at one of the surgical nurses who had walked over to look at Addy, and saw her look at the doctor and shake her head. The anesthesiologist who was sitting next to my head got up and walked over to the isolet that Addy was in, then walked over and lowered himself to be close to me. "Her heart sound good, she's breathing well...but she is missing her right hand. It's not there"</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't remember much after that point. Later I found out that I tried to get up off of the operating table, and that my father had to forcibly hold me down. I went into shock. My next memory is her being placed in my arms in the recovery room and asking my dad if my husband knew. The next four days were excruciating, a stream pediatricians who had never seen symbrachydactyly before, a geneticist who gave us a list of possible diagnoses and surgeries she would need before even running a test to rule those out, and the realization that we needed to make our friends and family aware. In the age of social media, people were wondering why we hadn't shared pictures or posted about Addy's arrival, adding another level of anxiety and stress to an already unimaginably difficult situation. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I was lucky enough to have family circle around me, and let me know that they were going to love and support Addy no matter what. I was also blessed with an incredible nurse who stayed with me through the night, talking to me, soothing me, listening to me cry and worry. She literally picked me up when I was too weak to stand on my own. I'll never be able to thank her enough for everything she did for me those four days.</span><br />
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What help and support have you been offered?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The first support we were offered was actually from my brother in law. When Addy arrived, I asked that my mom tell my sister and her husband. He took it upon himself to do some research online, and found several resources for my family, including the amazing Lucky Fin Project. He sent all the resources in an email to my mom which she forwarded to me when she felt like I was ready. It was an incredible act of love on his part, and wonderful foresight as getting online and doing research was the furthest thing from my mind in those first few weeks.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">From there, we sought out a medical diagnosis as no one at the hospital was able to give us one. I had a list of questions that I needed answers to, and no one was able to help me. We went to Cincinnati Children's Hospital and saw Dr. Little in October once my husband had returned home from Afghanistan and finally met his daughter for the first time. I had spent several days bracing myself for the visit, with my list in hand, determined to get as much information as possible. This was the first time we were in a room with a real specialist who would be able to give us the information we were desperate for. "It's symbrachydactyly, specially trans - forearm. It's not surgical, we will just want to monitor her as she grows and develops muscle." It as just. that. simple. He spent the time to answer all of the questions on my list, but at the end of the day, we had our answer: she was fine, she was going to be okay, nothing was going to change. And we've operating under those statements since. </span></div>
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What are the positives about your limb difference?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Addy's limb difference has opened our eyes to an entire community of people we didn't even know existed until she was born. Through the Lucky Fin Project, we've met friends that have become family, and through the magical world of social media, been able to watch their kiddos grow and flourish right along with Addy. It's been wonderful to see kids older than Addy excelling in sports, following their dreams, and figuring things out that I sat and worried about in her first years. Addy's limb difference has also taught us about acceptance of differences, the need to celebrate them, and how we can help to educate those around us about the limb difference community! We've also seen our son take on a protective role with Addy, and watched him step in to explain her limb difference when she was younger and unable to do so on her own. It was almost a relief when he was able to step in so that I didn't have to explain it to people over and over, and get thrown back to that day, and all those feelings of anxiety and worry. Now that Addy is five and able to explain it herself, it's been fun to see them both take on the educator role and spread limb difference awareness on the playground, in school, and anywhere we are! We even welcomed another lucky fin into our family this year...his name is Popcorn! He's a golden retriever puppy who was born in Canada missing his front right paw, just like Addy! He's been a wonderful addition to the family, and the bond him and Addy share is incredible!</span><br />
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<u><span style="font-family: "arial" , "helvetica" , sans-serif;"><strong>What negatives have you encountered?</strong> </span></u></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We have definitely had some uncomfortable situations and encounters with people, but as time has gone on and I've come to terms with our limb difference journey, it's been easier to take those uncomfortable situations and turn them into teaching moments. We are all about asking questions if they are from a place of genuine curiosity or empathy. What is harder to deal with and often times triggers my inner mama bear to come out, are the blatant stares, the pointing and whispering, and the occasional rude or mean spirited comment...nobody has time for that! :) </span></div>
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">Have you needed to have any procedures?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Addy's limb difference is not surgical, so the only intervention she's had is physical therapy and occupational therapy from the time she was about 6 months to 18 months old. She was struggling with balance and fine motor skills, and was falling behind on reaching her milestones. PT and OT helped her to catch up and learn to use her lucky fin for balancing, and holding things in her own special way! She's been able to figure out most things on her own, we haven't had to come up with any crazy inventions for everyday use like we originally thought we would. It's been amazing to watch her learn how to navigate her world in her own unique way. </span><br />
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">IT GETS EASIER. The first three years of Addy's life were the hardest. I struggled with anxiety and depression, and was eventually diagnosed with PTSD after everything I went through the day she was born. Every year around her birthday, I was thrown back to the day she arrived and went through all those same emotions. It was exhausting. A dear friend, also a member of the limb different community because of her son, once told me that the first three years are the worst. From there, it get's easier. She was spot on - I don't think I truly celebrated Addy's birthday until she turned four, not in the traditional sense. Yes, I went through the motions...cake, presents, family get together, the whole thing. But on the inside, I was a wreck. Reliving her arrival over and over on a constant loop, being swallowed and consumed in memories. It took several prescriptions of anxiety medications, therapy sessions, the Lucky Fin Project and it's community, and the love and support of an amazing man who stood by me at my lowest points to get me to where I am today. She's truly amazing, I've always known that, but it's taken me a while to accept and embrace our limb difference journey. There's an entire community waiting to love and support new families as they face a diagnosis or birth of a limb different child. Welcome to the club! </span></div>
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<strong><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What advice would you give a kid with a limb difference?</span></u></strong></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">BE YOU. Be unforgivingly you. Because you are beYOUtiful. </span><br />
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<br class="Apple-interchange-newline" />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-21395958988745547112018-09-12T12:13:00.000-07:002018-09-12T12:13:59.698-07:00Hazel's Story<div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>Tell me about about you? </u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">My name is Hazel Newhouse, I am a pblogger and a mum of 4. I have 3 girls and a son. We live in Bedfordshire and live self sufficiently growing our own food and being passionate about reducing waste and our plastic usage. </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What is your's or your loved ones limb difference?</u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">My son Jimmy was born with Bilateral Syndactyly and webbed toes. His Syndactyly affects both hands, which makes his ring and middle fingers fused. The tips of his fingers share a joined fingernail. Both feet have webbing on the 3rd and 4th toes too. </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>When did you find out Jimmy had a limb difference?</u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">We found out about 3 minutes after he was born. We didn't have a clue that he was going to be born with the Syndactyly. It was a huge surprise but it does run in the family. My husband's dad has webbed toes and his brother had webbing on one hand (it was separated when he was a young boy), but nothing as complex as Jimmy's. When he was born they laid Jimmy on my chest, I thought the fingers on his right hand were stuck together with baby-gunk. I tried wiping them and that's when I realised that they were stuck together. I asked the midwife to have a look. She then inspected his other hand and feet. That's the moment that we realised all 4 limbs were affected. </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What help and support have you been offered?</u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">Our midwife referred us to the plastic surgeons right away. A paediatrician came to see us on the ward who confirmed that the condition was called syndactyly. When Jimmy was 6 weeks old we saw his plastic surgeon to discuss the future for Jimmy (operations and likely problems that we may encounter). Other than that we haven't had any other support. To be fair, we don't really feel that we need any. I have joined a few Facebook groups and follow some wonderful Instagram pages, and we are a great community for advice. </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What are the positives to Jimmy's limb difference? </u></b></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif;">The main positive, and something we take with hilarity ,is that we don't have to battle the fingers on gloves, instead Jimmy wears mittens! So much easier than wiggling 5 little fingers into gloves. Also, his little fingers and toes are super cute!</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What negatives have you encountered? </u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">Jimmy does struggle holding things. He was quite delayed compared to other babies of his age with fine motor skills. He can be clumsy with his hands and quite often drops things as he doesn't have a very strong grip. His joined nails are like little razor blades, They are so sharp! It's also really tricky to cut his affected nails, because they grow downwards. They often become infected and bleed randomly. </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>Have Jimmy needed to have any procedures?</u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">When Jimmy turns 1 in a few weeks, we have been told to expect a letter from the plastics department calling for Jimmy to have x-rays. This is to see if the bones are also affected. He will then have his 1st operation to separate his right hand fingers. A few months later he will have a second op to separate the fingers on his left hand. The doctors have said that an operation wont be needed on his feet, unless the webbed toes start to cause problems with walking. </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">Just enjoy the cute uniqueness of your baby. Yeah, things will be different, people will ask questions and you will find yourself trying to explain your child's difference to everyone you meet, but your baby doesn't know any different. To them, it's normal. Join groups and pages on social media, as these are real people with real experiences, rather than googling the condition and scaring yourself silly! </span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What advice would you give a kid with a limb difference?</u></b></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;">You're beautiful, no matter how many fingers or toes you have. People love you and your differences. 5 fingers and toes are overrated! </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">http://www.thenewhousefamily.co.uk/category/our-syndactyly-journey/</span><span id="goog_1694573461"></span><span id="goog_1694573462"></span><a href="https://www.blogger.com/"></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Instagram : <a href="https://www.instagram.com/thenewhousefamily/" target="_blank">@TheNewhouseFamily </a></span></div>
afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-45397639126160713322018-09-05T10:20:00.000-07:002018-09-05T10:20:42.869-07:00Becki's story<div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Becki is an incredible mum of two boys, one of which has an upper limb difference. Her words I have found very comforting and love the support network she has formed through social media and her specialist hospital.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>Tell me a bit about you?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Hi, I am Becki. By day I am a special needs teaching assistant in a high school, and by night I am a very sleep deprived mum of two. Dougie, two and a half, and Edward, 8 months.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What is you or your loved ones limb difference?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It is my son Dougie who has a limb difference and he has symbrachydactly of his left hand. I think his doctor referred to it as ‘u-shaped cleft hand’. He basically has a thumb, which looks ‘normal’ but doesn’t bend, and a little finger which is has grown at an angle across his rather than straight up. He has three nubbins in between these that are the starts of fingers that just didn’t grow. I have added a picture of his first X-ray that he had at around 12 months old.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>When find out about Dougie's hand?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We didn’t know about Dougie’s hand until he was born. It was a bit of a shock, but once I knew that it wasn’t caused by anything I had done both myself and my husband had no issues with it at all. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am actually pretty pleased that I didn’t know about his hand before he was born because I think I probably would have worried about for the whole of my pregnancy and probably blown it all out of proportion. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We have found lots of support and comfort through 'The Lucky Fin Project' which we found ourselves whilst researching. They have shared pictures of Dougie on their instagram and Facebook accounts and I have had people contact me through them for advice and have made some friends whose children have very silage hands to Dougie. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We have also found that Birmingham Children's hospital have been amazing at organising events for all the children under the upper limb service and we have got to know a lot of families. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What are the positives of Dougie's limb difference?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Dougie definitely sees his limb difference as something that makes him special. Everyone in our family and all our friends have a very positive towards the whole thing and I think it has definitely helped Dougie to be proud of his ‘nubbins’</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">None really. We have never had any negative comment as such. We once had a friends daughter refuse to hold his hand but I think that is pretty much it</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>Has Dougie had any procedures?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We were offered a procedure that would take a bone from his foot and be placed in his little finger to attempt to stabilise his finger (which is very flimsy and bends back on its self and comes out of place a lot) </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But we were told that there was only a 50% chance it would IMPROVE his grip and there was a 50% chance it might limit the movement in his hand, so we declined </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What is the best advice you could give to a family who are pregnant or have just had a baby with a limb difference?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Embrace it!! What may at first seem like something that will limit your child certainly will not! It will make them unique and there are ways around everything. There is nothing they will not be able to do.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>What advice would you give a limb difference kid?</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Don’t let anyone say ‘you can’t’ </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You can do anything you want to do. It may take a bit more work than it would for others but never give up.</span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-21217422238438979142018-08-29T10:16:00.000-07:002018-08-29T10:16:15.484-07:00Haylee's story<div dir="auto" style="font-family: Helvetica; font-size: 12px;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The lovely Haylee has agreed to tell us a little bit about her limb difference, I came across her on instagram using the name <a href="https://www.instagram.com/littlehandfred/" target="_blank">@littlehandfred</a> and absolutely love her positive and hilarious post about Fred.</span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">Tell me abit about you:</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My name is Haylee Gardner and I’m a senior in high school. I love animals and am going to college to get a degree in animal science. </span><br />
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What is your limb difference?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I was born with amniotic band syndrome affecting my left hand. So when I was being developed in my moms stomach, a string came off the amniotic sac and wrapped around my hand and cutting off the circulation to it and causing it to stop growing. </span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">When did your parents find out?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My parents actually didn’t know until I was born because it didn’t even show up on my ultrasound. </span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What help and support have you been offered?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Support comes mostly from my family and the people around me, and when I was younger I went to Shriners- a n organization that specializes in limb differences in children and other medical issues with them- and was able to get a couple of prosthetics through them. I never really like them, though, because they didn’t realky make anything specifically easier, and I couldn’t feel anything with my hand like I do now. </span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What are the positives about your limb difference?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Having this Limb difference has kind of forced me to have confidence through it, and has allowed me to have multiple opportunities through it including numerous news articles and being able to inspire others.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I’ve only ran into one bully, and they actually had abs as well, but they never told anyone about it and was very rude when anyone asked. So when I moved there she was nasty to me because I was so open and willing to share what happened. We were both young, though, and I understand why she was how she was. </span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">Have you needed to have any procedures?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I haven’t had any procedures yet and I don’t believe that it will cause any problems in the future.</span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My advice is to raise them by telling them that they are no different than anyone else, not to hide their difference, and that it’s not allowed to be used as an excuse. We can do anything anybody without the limb difference can do. </span></div>
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<b><u><span style="font-family: "arial" , "helvetica" , sans-serif;">What advice would you give a kid with a limb difference?</span></u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As a kid, don’t let anyone tell you you’re weird or scary and just find the friends who love you regardless of how many hands or feet you have. Don’t focus on the mean people, but the people around you who don’t care about it. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My instagram is <a href="https://www.instagram.com/littlehandfred/" target="_blank">@littlehandfred</a></span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-47706375536974652402018-08-22T12:38:00.000-07:002018-08-22T12:38:16.402-07:00Ignorance is bliss<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">So August has finally arrived - the month of THE first foot appointment. I currently feel quite anxious and nervous about the whole thing. I quite like everything as it is, I'm used to his foot - in fact I saw a baby with two feet and I surprised myself by thinking that having two baby feet was strange. I'd forgotten what two tiny baby feet had looked liked.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am quite enjoying being as we are, nothing needs doing and I'm living in ignorant bliss that anything NEEDS to be done. Obviously they could say exactly that at the appointment, but I kind of feel like I need to think he needs loads of operations, then even if they say he needs one when he is 30 years old I am still prepared! Sounds so outrageous being worried about that, but I guess thats being a parent, you worry about some of the most obscure things and then try and rationalise it. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I keep flitting between feeling guilty that I feel as I do. Especially when plenty of other families have been through so much worse, and have to deal with a lot more on a daily basis. I guess for me, this is what I know and my situation. For someone else that might be how they feel about their own individual circumstances, whether its a missing toe or a missing leg. One thing I have to thank instagram for is seeing other families daily lives, I have been following families with limb differences, other physical disabilities, leg problems, developmental problems, and I must admit I am in awe of how honest and raw some of what they share is. It helps me to see they can make lift of a bad day, or what aids they have been given to help with something so simple - one day I follow put up a picture of an arm adaption for her little ones bike - I mean how amazing! Things like that just make me smile and drag me out of a silly 'but what if' mood. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Mr. N is now 4 months old and is doing everything he should be, he's trying to roll, doing better at tummy time, can support his head quite well, he smiles a lot, giggles, babbles and reaches out to play with his play mat toys - guiltily he does love watching a bit of telly, but if it means I can drink my drink and not have to hold a child I am all for it. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We are still breastfeeding and it is going really well still, I always thought I would combi feed but it turns out I am far to lazy to make a bottle up, when I can just whip a boob out without any preparation. I am over the moon it has worked for us this time, but I must admit the lack of clothing is a little bit annoying, having to think about what sort of access my tops have is a bit of a pain. I have been recommended a facebook group called 'Can I breast feed in it?' which is amazing. There are a lot of ladies who share tops, dresses, jumpsuits etc that they have found easy to feed in. I just haven't been brave enough to buy anything yet as my body has changed so much ... but honestly if thats all I have to moan about, ill take it.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Keep an eye out for a few different blog posts coming out, I have got a few lovely individuals involved in sharing their limb difference stories, which I can not wait to share.</span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-91339756870874692672018-07-12T14:11:00.003-07:002018-07-12T14:11:17.675-07:00Hormones and Anxiety<div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">Three months in and I THINK we are getting to grips with this whole game called parenting, I have realised and started to accept that this time round is completely different to the first time. I am so glad I made the most of cuddles and naps when my daughter was a baby, as this time round I can't get away with as many cuddles or naps - especially as my darling children appear to tag team it ... apart from right now where I will hopefully have more than a few minutes to myself.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Mr. N is doing great, he is growing well on just my milk. I have tried to introduce a bottle once a day, but I'm actually far to lazy for that right now and would rather just whip my boob out (or so to speak). He's smiling, cooing, and enjoys is play mat for more than 2 minutes. We have had a slight problem with constipation with this hot weather and I will share the advice I was given from lloyds pharmacy and my wonderful NICU workies:</span></div>
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<li style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Drink, drink, drink, drink, drink.</span></li>
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<li style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Drink dioraltye so our bodies get the electrolytes we need but your child gets the fluid.</span></li>
<li style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif;">Eat fruits beginning with P - pears, plums, peaches etc.</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;">I spent ages googling what to do and this advice worked, so to save another mum spending hours googling; try this and see if it helps. (I should probably add that this isn't scientific or anything like that, just what I personally found useful. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So, other than sweating like there's not tomorrow and the days flying by with having two kids. I have had 5 minutes to think about life and how I'm feeling about Mr. N's foot. I do think I am having some sort of hormonal blip or something following the end of the fourth trimester (worth googling during a feed or toilet stop).</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Basically I've been feeling anxious about our appointment next month. I'm scared about what they are going to say, we will finally get to see them x-rays that were taken before we were discharged, and the specialist will be able to give is more information. The thing is, I seem to have stopped being able to accept that he has a foot, a toe and enough to walk on ... so why am I not able to accept it?! I guess I'm subconsciously trying to protect myself from any news such as 'he needs an operation to fuse his ankle' or 'he won't be able to walk properly without a special shoe'. The thing is last week this didn't particularly bother me, and he's perfect and these extra things don't matter. This week however, I am driving myself mad and my anxiety has creeped in. I felt it creeping in, but didn't really know why until I had 5 minutes to just sit and think on my own when my hubby was out. Funny how our minds work really. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Its made me think about all of the families I have helped look after in NICU and how we say 'they will grow out of their desalts' for example, for the premature babies. I know they will and 99% of the time they do, but for them parents that 1% is a huge number and your mind travels off 10 years into the future as you try to imagine what life will be like with apnoea monitors and appointments galore. Another example; when we say a baby with a PDA needs a ligation, I know that the baby will have to be stable enough to travel and its a quick procedure done by professionals at specialist centres. For the parents it must be so hard to imagine it will be okay, especially as 9 times out of 10 most people haven't thought about a neonatal unit, let alone how we transfer their very special baby from place to place ..... anyway I digress ... </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I guess I just feel like my mind is all over the place, and its only finally having time to sit here and write this, that I realise how I am actually feeling. I know I have so much support around me and Mr. N will be fine no matter what, but the truth is I'm already worrying about the bullies 5 or 10 years in the future. How do you make sure a child is brought up strong and resilient? Luckily his dad has a weed sense of humour, so I imagine Mr. N will have some good come backs stored up for when he starts school. I know you can't protect them and kids bully kids for the colour of your eyes or hair, I just can't help but worry. As one of my dearest friends reminded me though, it is being a mum. Being a mum IS worrying for every child. When I think of it, I worry about my daughter to, but I worry about different things.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Anyway I am rambling - as always please share my blog to anyone you may know, I'm always open to talking to more parents and people. If you hear or see any limb difference news, be sure to message me on twitter, instagram or facebook. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">P.s. What do you think of my new blog layout? and someone please check my social media icon links work. Thank you from a novice blogger.</span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com1tag:blogger.com,1999:blog-5791281193505634208.post-60275608499763385772018-05-23T13:14:00.001-07:002018-06-17T13:35:07.479-07:00The fog of motherhood take 2<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">How on earth has 5 weeks gone by already?! I'm not quite sure how we have survived this fog of becoming a family of 4 but we have DONE IT!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Last week was quite possibly the hardest, my 2 year old unfortunately had a UTI, which meant temperatures of over 40 and a course of antibiotics. The best bit was trying to get a urine sample from a toddler who isn't potty trained and complains it hurts every time they wee. During this week Mr. N decided that he needed feeding every 1 - 2 hours for a chunk of nights was necessary ... all of this whilst I had mastitis. Literally, my boob never felt so sore, you can imagine latching a baby every 1 - 2 hours on a boob that felt like it has needles poking it every time anything brushed the skin ... and when I say boob I mean the whole thing, not just the nipple and a bad latch type pain. Needless to say I am super happy to be into week number 5 which is already much much better ... no UTI ... no mastitis ... Mr. N still feeding 1 - 2 hourly, but thats fine with me now it doesn't hurt.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, how is it having a newborn again? Well, very very strange. It feels totally different from when I had Miss. I. I realised how rubbish I felt both mentally and physically. Physically having no stitches has made such a difference, I can move around easily without being in pain and I can sit and breast feeding without bring scared of ripping my stitches. Within the first two weeks, we had already ventured to see friends, been out for coffee, walked the dog, done washing etc, All of which helped me feel amazing and like 'normal'. My SPD played up for the first 2 - 3 weeks and made long walks difficult, but now its cleared up I am enjoyed venturing outside for walks in the sun.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Breastfeeding has gone so well this time, once the initial engorgment settled down and Mr. N could latch properly. we seem to have somehow managed to continue for 5 whole weeks! He is also putting on weight, he's not gaining loads and has dropped a centile, BUT he is growing and being premature the health visitor has said its fine for him at the moment and to just keep an eye .... weighing clinic this afternoon for us!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Mentally, I can hand on heart say I'm doing really well. I spent the first 3 weeks worrying that I hadn't had the baby blues yet, I hadn't felt overly emotional and I was genuinely waiting for the downfall ... and I am pleased to say it hasn't happened. By this time with Miss. I, I was feeling pretty shocking and not right at all but had no idea why. This time I feel pretty good. Last week I felt pretty emotional and a bit teary but as you have read, it wasn't exactly the best week in our household. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">All in all everything seems to be going really well 😊</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We have now received a letter from SGH with our first appointment with the plastics team. I must admit, it did make me feel a bit weird, the foot genuinely hasn't bothered me (other than when it slips out of my grip during nappy change, leading to 'noooo not in the poo' moments) and if anything I can't imagine him having two 'normal' feet. I quite like that he has a little foot and a big foot, the uniqueness makes him who he is. So, to receive this letter it almost felt like it then became an issue. Something that needed to be fixed, and, well, I don't think he needs fixing. He's perfect the way he is. BUT I am intrigued to see what they say, I'm hopeful it's only cosmetic operations that need doing so that he can choose if he wants them, and that functionally everything will be okay for walking/crawling. My main worry is that the toe he does have on that foot might get damaged or sore when he starts moving around - I'm wondering if we would get some advice or physio to help us teach home how to use the foot properly. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The main thing I have learnt this week is that socks do not stay on his little foot!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">P.s. I am currently on my iPad and it's to slow to add links and follow threads, so please check out my other blogs for Facebook, instagram and twitter links..</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">P.p.s. Don't forget to check out www.mybump2baby.com website and their app</span></div>
afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-69149340198276547742018-04-22T02:21:00.002-07:002018-04-22T02:21:56.814-07:00The start of the adventures of a mum of 2 with a lucky fin <div style="text-align: center;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>He is here!! My bump turned into a beautiful baby boy who was in a slight hurry to arrive into the world ... well, actually, he couldn’t make his mind up. I love a good birth story so here is mine ...</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><u>The birth story</u></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I managed almost a whole week off work before I went into labour. The day before my waters went my husband and I decided to go out for lunch as our daughter was visiting her auntie and uncle for an overnight stay. I’m so glad we actually had lunch together just the two of us, as little did we know we would become a family of 4 within a few days. That night I had a very restless sleep, I couldn’t really settle and my mind and body were very restless, I did managed to fall asleep around 1/2am and was woken at 3am by a a funny feeling followed by a little gush ... needless to say I jumped out of bed and went to the loo where my waters continued to go. My husband and I were sleeping in different rooms as I needed the space to be comfy, so I rang him and told him the exciting news.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Due to being 35+4 we had to ring triage and come in to be assessed as technically I was in premature labour ... or my waters had ruptured prematurely. The journey to the hospital was lovely and quick at 3/4am, and when we turned up we were assessed straight away. Well, I have never experienced my waters going the way they kept going!! I had to change my trousers once we arrived at the hospital and then again following an intense pressure followed by a pop (I got my pop yay!) and more waters going everywhere, and hoped that that was the majority of my waters ... I actually couldn’t believe how much there was.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We were hooked up to the CTG, I had my observations and bloods done, followed by being seen by the doctors shortly after. We were admitted to labour ward for a short while to see what was going to happen, my contractions were irregular but there. I could still talk through them, eat and drink etc so knew I was in the early stages. I hoped things would start to speed up within the next 12 hours, just as they did with my daughters labour - Its funny how you constantly compare from one labour to the other, whether it be for a rough time line or hoping it goes the same or differently.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Annoyingly 24 hours later and I was still waiting for labour to start properly. The contractions had been stop/go the whole time, and at their worst I needed to put my TENS machine on the lowest setting. They were manageable and let me sleep in between them. Due to being prem and labour taking a while to get going, we managed to get the full two doses of steroids in plus a decent coverage of antibiotics - the NICU nurse in me did give myself a little high five ... but also wanted labour to start!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Morning ward round came and we made the decision to induce the labour. I say we, as it was very much a decision made between me and the docs/midwives. I knew enough about prem babies, I knew the risks either way and I spoke to the midwife and doctor about this. They were totally fine with the decision and felt the same to.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At 3pm we were taken to labour ward, we were assessed and my body was slowly getting ready. The midwife did a sweep and put the gel in to start Labour. We were placed on the CTG again to monitor baby during this process, I stayed on the bed initially and then got onto the birthing ball to try and get things going. My contractions started quite soon after the gel was put in, I was really surprised how quickly it started but also very pleased that things were finally starting to get going.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don’t remember and exact time line but at some point I asked for gas and air and I was in complete, perfect high bliss for a good while. I remember feeling the contractions getting stronger and using my husbands arm to hang off during the big contractions. At one point I did loose control a little bit and felt like I couldn’t do it ... at this point I was at 7cm ... the need to push was overwhelming and primal ... 2 minutes later a little wet, purple, crying bundle was placed on my stomach. I couldn’t believe I’d done it, I looked down and saw a tiny human who looked just like their big sister. The cutest, roundest face with little dark eyes staring up at me.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>During that moment, I knew my baby was perfect.</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My husband and I finally remembered to look at ‘the bits’ to see if we had a boy or a girl ... at that moment I felt a warm trickle over my tummy, we lifted a towel and there were some boys bits and he was weeing on me already, Boys hey! After a breast feed and cuddles we decided to look at his foot, I hadn’t forgotten about it, but it also didn’t feel important to do straight away. As you have read from my previous blogs, I have felt quite anxious about the foot, in my head I have been imaging the worst and worrying about how it will affect him. I looked at the foot and honestly, it wasn’t as bad as I thought. Yes, he has one toe (we aren’t sure which one) and his foot is small, but it’s smooth, round, and tucks perfectly behind his other foot when he crosses his leg. I had been worrying that I would feel shocked by the look of his foot and worried I wouldn’t like it, but actually, it didn’t shock me and that foot is him. I can’t imagine what he would be like with all 10 toes and at the same time it doesn’t matter. Before we left the hospital the doctors wanted to do an X-ray to see what was there and to have a starting point for future appointments. I have no idea what the X-ray shows, part of me wants to know but the other part of me knows it won’t make any difference to us. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">During our time at the hospital, he passed his hearing check and baby check - all things that have reassured me that everything else is okay. We now just have to wait for an appointment with the orthopaedic and plastics team at St. Georges to see if we need to do anything for function or for cosmetic reasons. I' m not sure when this will be, but in the mean time I'm just looking forward to getting to know my son and watching him grow.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So here we go, our journey as a family of 4 starts here 💙</span><br />
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-584512361084105582018-03-27T10:21:00.001-07:002018-03-27T10:21:32.212-07:00Some exciting news and a little bit of mindfulness<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
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<span style="font-family: Arial, Helvetica, sans-serif;">✫I have some exciting news - I have been chosen as a blogger to appear on MyBump2Baby. This is an incredible website and directory for parents and fantastic for businesses who need advertising space. Please check out the link below ↓↓✫</span></div>
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<span style="background-color: white; color: #44546a; font-size: 14.666666984558105px;"><span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.mybump2baby.com/" target="_blank">I am one of MyBump2Baby’s favourite bloggers</a> </span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">As mentioned in my previous blog I have decided to write about a few tips and tricks that have really worked to help sort out my head space during this pregnancy. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A little bit of background.....(here goes)..... Following the birth of my daughter I suffered from postnatal depression, anxiety and OCD. Fortunately I saw an incredible health visitor who picked it up at the 6 week check, she contacted my GP and I was seen later that afternoon. The hardest bit was gearing up to the appointment to actually say "I don't feel right", I couldn't put my finger on what was wrong, I just knew I didn't feel right and I was doing things that weren't normal. I'd constantly check the monitor to check my daughter was breathing, if I didn't she would die. I couldn't leave her in a separate room to me, because someone would kidnap her if I did. I would constantly check her temperature, if she was to hot she will die. My thoughts were completely irrational and so black and white. My general mood had also slumped, I felt so low, so empty and not myself. I don't ever remember feeling overwhelmed, but more obsessed with doing certain activities to keep my daughter alive. The hardest 'thought' I had was someone kidnapping her, I remember one night I woke up and was completely convinced that someone was in the house and they were going to take her, I searched the house and ended up in the bathroom. I looked at myself in the mirror and I didn't recognise myself at all, it was like a stranger was looking at me. Needless to say I didn't sleep much that night, and from that night on I kept waking up thinking a figure was stood at the end of the bed near the Moses basket. Every time I woke in the night I would see that figure, but oddly as time went on I felt like it was there to keep my daughter safe from the kidnappers .... now, I do realise this sounds crazy, but when your sleep deprived, struggling with feeding, a first time mum, and adjusting to this new life, its difficult to realise whats 'normal' or 'not normal'. I know about the baby blues, postnatal depression, postnatal phychosis etc but when your the new mum it just becomes about getting from day to day. I will forever be grateful for my GP for encouraging me to start treatment, as a nurse I really didn't want to take antidepressants and have the label of 'depression' but I had to do it, and I did it for my daughter. I also had CBT (cognitive behavioural therapy), that was amazing for the anxiety and the OCD side of how I was feeling. I had face to face sessions for around 5/6months, my friends were amazing. I only told a few people and they helped by watching my daughter so I could attend. so THANK YOU, they know who they are.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">These days I'd say the anxiety side is really well controlled, as is the depression. However, following my 20 week scan and moving house I started to not feel right again. I felt really low, tired, I felt I had no room in my brain to care for anyone, I literally felt that 'fog' id often heard about with depression. I realise now that it is because I didn't allow myself to just digest the information, and get to grips with the fact that my babies foot was not my fault and it was simply just 'one of them things'. My consultant for the PND suggested I see my GP to talk about adjusting my meds or having some time off. So off I went to see my GP and she signed me off work - I really didn't want to be signed off but my goodness am I glad she did! During the time I had off I just took my brain back to basics, I tried to find enjoyment in the little things like reading, seeing friends, going for walks etc. Here's a list of what helped me the most:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Just be honest and talk about how your feeling. I felt vulnerable and embarrassed about explaining how I felt, especially as I felt I was repeating myself with my worries. My friends never ever made me feel like I was being annoying or inconveniencing them, I' m just so grateful I could just 'be' around them. Even if it meant sitting in silence with rubbish on TV - so thank you!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">If anyone is feeling the way I have described, please please please talk to someone. Its amazing how many people have felt like the above, their advice and their shoulder to cry on is worth feeling a little bit naked as you take a deep breath to say how you really feel.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Now, I say exercise quite loosely....I literally mean a small walk! With my pregnancy I have PGP and the pain doesn't allow for nice long strolls in the wood, but getting outside for a little wonder works a treat.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Just get out! no matter how much you want to just be in a dark room in bed, make sure you at least step out into your back garden to see the fresh air. I have had days where all I want to do is close my eyes and never leave my bed, and to be honest some days I did do just that. But then I made sure I picked up my phone to arrange to see a friend or said to my husband 'lets go out for coffee tomorrow'. I treated it almost like a backwards reward, I can have a moping day but ONLY if I make plans.</span></div>
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<span style="color: #38761d; font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>→Books←</b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Fearne cottons books are amazing. I have read her 'Happy' book, which I would highly recommend. It focuses on letting go of perfect and being happy. And that's exactly what I needed to hear! I needed to know its okay to be a bit faulty and just embrace everything. Our own fears are what limit us and all that ... words I needed to hear. The 'happy journal' I have also been doing, a bit sporadically I must admit, but the questions really make you think. They are really basic questions but they get you thinking and are sometimes quite hard to answer. I have the 'Calm' book ready for when I go on mat leave to work my way through. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">A friend of mine also brought my a Mindfulness book that's been really good to dip in and out of. Its called 'The little book of mindfulness', I love that it goes through the history of how mindfulness came about and you only need to do 10 minutes a day.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I'v chosen to do yoga at a local NCT group. I love the thought of yoga and wanted something that would be my one on one time with my baby as well. One of my friends did swimming and spinning up until the week before she had her baby. Having something for you is so so important. I have found since doing this blog, that this counts a little bit as something for me.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Since doing all of the above I am genuinely in much better place, 14 weeks on and I definitely feel like me again. It always surprises me how easy it is to fall down and how long it takes to get back up again. I can honestly say I am grateful for the roller coasters once I am back up again, as each time I've learnt something new or have achieved something new. Each time I have reached out for professional help and personal help, I think a lot of the time you need both to just ensure you don't fall down too far.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Anyway thank you for listening to the above, I' m sorry if it has upset anyone but I just want to be honest and share my story. On a MUCH lighter note, I am so excited to say that Saturday night is my last night shift before I go on maternity leave! Now I really have to get my butt in gear and start getting organised for baby.... who I must add I CAN'T wait to meet and give a big cuddle.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">**I can't wait to start our journey together**</span></div>
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afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-49030732650985530982018-03-03T03:32:00.001-08:002018-03-03T03:32:24.900-08:00Finding inspiration<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">As mentioned in my last blog, I have spent the last few weeks looking for bloggers, inspirational people, and websites that make me smile and feel positive about my journey into a family of 4 with a baby who will be slightly different.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Firstly id just like to make it clear that these are people, pieces of information and charities that I have found incredibly positive and have helped me, and I just hope that these little nuggets of information help someone else. I have tried to focus on those with foot differences, but limb differences do over lap. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">On instagram a lovely lady called Hayley contacted me and shared that her daughter was born without a hand. Her instagram page is so vibrant, positive and full of love, there beautiful pictures of her children and I could see that her daughter joined in everything and is part of it all. Hayley has allowed me to share her website for anyone to have a look at www.hayleyslittlethings.com </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">lucky_fin_project on instagram been incredible. I have been on contact with them and asked if they could put me in touch with any members with missing toes. They sent me a couple of links, and I must admit I haven't contacted them yet - all I will say is ask them for help/advice, anything. Thats what they are there for.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">turtletheluckyfinpup is slightly different but inspirational none the less, turtle is a dog born without her left paw, her human owner was born without 10 fingers - I mean what a perfect match.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">www.scareymommy.com - there is a lovely blog called "special needs adoption: Limb differences", which is about a couple who adopt a little boy from china who was born missing his right hand. Its quite an interesting read about the adoption process and how there seems to be an umbrella term in regards to congenital problems in china, over all it is a positive read, especially when she starts to write about how her son is doing now.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">www.themighty.com - "8 things I want parents of children with limb differences to know". this is just BRILLIANT!! its written by a lady called Brittany Moore who has a limb difference and it is just fantastic. I love the part where she tells us mums not to blame ourselves and to teach self love instead. This will definitely be an article I will keep referring back to when I have a bad day.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">luckyfinproject.org/blog/ - there is a list of 7 bloggers, all of them different and inspirational in their own way. the founder of the lucky fin project has a blog up on there as well as a variety of different people. Its definitely worth a look to see what others have to say from several points of views. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">onelittlefin.blogspot.co.uk - "books about limb difference". something I had never ever thought of as an education tool for this baby or my daughter. I had no idea there were this many books around that we could read to help our child adapt and accept themselves if they need to. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As far as books go, we have only ventured to books that talk about being a big sister and a new baby coming into the family, my daughters attention span isn't the best unless Peppa pig is involved but I love the idea that I could get some books that have pictures of children with limb differences. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Tom Dempsey, a well known NFL player of his time. born without the toes on his right foot and fingers on his right hand. He is best known for his 63 yard field goal - I am no sports expert, in fact it bores me really but this to me is incredible! He managed to make the hall of fame for doing something someone with a while foot couldn't do (ill add I do know his record has since been broken, but he still set the first one!).</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Adam Hills - born without a right foot. He has had a spectacular comedic career. </span></div>
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<span style="font-family: arial, helvetica, sans-serif;">Alex brooker - born with hand, arm and a twisted leg that had to be amputated ... and look how much he has managed to accomplish against the face of adversity? Literally amazing.</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">The last two blokes I have seen on TV and enjoyed the shows they have done. They have a brilliant sense of humour and I'm very very hopeful that my baby will have the drive, ambition and the sense of humour to be as successful as these two, and of course Tom Dempsey to</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This week has been a pretty good week with my pregnancy. The only time I wobbled was when I googled baby feet images, followed by baby feet with deformities ... I was looking for one of those really cute feet pictures but with a baby with missing toes/foot, instead I came across a load of medical photos, which obviously aren't taken to be cute and to be honest it was a bit of a shock. I have purposely not googled images of how babies feet can be born as I know they are all individual, and truthfully I didn't want to scare myself. Seeing them pictures actually frightened me a little bit, I'm not 100% sure why, at a guess I think I naively thought i'd come across some pictures like 'normal' baby feet - beautifully posed, pink and warm feet. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">I also had a routine consultant appointment (routine for me) and we had a chat about how things were going etc; I decided to bite the bullet and admit I'm terrified of going over due and something happening - working in NICU means I tend to see the sickest babies, and although I know as a unit we are amazing at our jobs and have so many more success stories than sad stories, I just don't want to 'risk' going over and adding to more than I need to get my head around. We have decided to talk about this in 6 weeks time, at the moment I don't want to be induced or have a c-section or anything like that - just maybe a sweep or anything that can encourage baby to come along. Hitting 30 weeks has made me a little nervous about the fact I'll finally get to see my babies foot and just get on with having a newborn. Part of me is a little scared I won't like the foot and I will struggle to bond with the baby ... all of which I know is really stupid and probably will not happen at all, but I' m worried it could happen. I think I probably had these thoughts before my daughter, about not bonding with her, if I' d be able to cope etc ... and we got along just fine (apart from a little visit from post natal depression), maybe I'm just worrying like a second time mum?! maybe I'm simply worrying with my love for my second child be different? Oh these pregnancy hormones are just superb aren't they.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Anyway I hope everyone has had a good week and remember to send me any nuggets of information to the places below... </span><br />
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<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;"><b>Twitter: afarmandababy</b></span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-32796303896146196052018-02-23T11:54:00.000-08:002018-02-23T12:21:37.442-08:00Peppa, tantrums and twonagers<div style="text-align: justify;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">I think we can officially say we have reached the terrible twos. My daughter isn’t two until the end of March and I naievely hoped that we would at least have until the beginning of April before we enter this stage ... and my goodness have we entered with a bang ... refusing dinner, throwing things, saying no to EVERYTHING, throwing herself in the floor, refusing to get dressed, refusing to go in her high chair, this list could go on. Between these highly frustrating moments we have times of pure love, a cuddle fixes everything, peppa fixes everything and cake fixes everything (even though she doesn’t actually like cake, but hey she’s a girl after my own heart).</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I’m praying that by the time baby number 2 arrives we have figured out how to manage her tantrums (if that’s even possible??) or she is over this phase, and we are coming out into the lovely threenager phase I have heard about.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Admittedly I have to confess we have been super lucky with our daughter, she was such an easy baby on the whole, and she still is really good. She tends to make people smile even when she’s in a mood, for example this week we were in our local shop, I had finally given in to my carrot cake and ice cream craving and was juggling those items along with a couple of other bits. Izzy decided she wanted a chocolate bar and she was going to do a grab and run ... I managed to get hold of her hand and between her giggles and wanting to moan, a bloke walking by smiled and gave me that ‘iv been there before look’. This might seem really insignificant and a silly story to tell but it actually made my day and reminded me of the true innocence and impulsiveness of a toddler.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This week we went back to Hartbeeps! I hadn’t got round to signing up again after Christmas due to moving house, and with my head feeling a little bit all over the place with the babies foot news. I was genuinely quite nervous and excited about going back. We have been going since she was about 6 weeks old and I have loved every single session. I think it really helped me bond with Izzy and allowed me to just focus on her for a whole 45 minutes. Obviously my daughter is much bigger now and I still love the one on one time with her. For the whole session she just makes me laugh and smile. She was in her element, dancing, ‘sharing’, playing with the toys and collecting her favourite rattle eggs. I’d throughly recommend hartbeeps to anyone looking for a good music/sensory/play baby and child group.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This week a special shout out to Milo (our cat, see picture below) for putting up with being taught about Peppa and 'sharing' the iPad. . </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I would also like to say thank you for the connections I have made this week, I have been put in touch with different charities and individuals, who have taken the time to talk to me about their kids being born missing limbs/digits. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Heres a link of the charities I have been looking into:</span></div>
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<span style="color: #38761d; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>The Lucky Fin project - <a href="https://luckyfinproject.org/">https://luckyfinproject.org</a></b></span></div>
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>Reach charity - <a href="https://reach.org.uk/">https://reach.org.uk</a></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The lucky fin project has recently had some more instagram exposure from the actress Millie Bobbi Brown who stars in 'Stranger Things'. Head to this link to see more: <a href="https://www.instagram.com/lucky_fin_project/">https://www.instagram.com/lucky_fin_project/</a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have found a few bloggers/instagrammers who's stories have been really inspiring and great for me to see. I will compile a list (and ask permission) to show the ones I have come across. I think because these days social media is so easy to access its been a lot easier to come across others in the same situation through instagram and such like, its brilliant and reassuring. I've been able to see families being 'normal' and doing the usual activities confidently. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Its funny how even with the exposure of the Paralympics and shows like 'The last leg' I worried about my baby being able to join in 'normal' activities and maybe not being able to achieve that one dream they want to do. I can honestly hand on my heart say that I'm starting to not feel like that. This kid will be able to do exactly the same as Izzy, they might be brilliant at different things but there will be nothing they can't do or at least try. My sister and I joked about us joining them in Canada and teaching baby how to ski so he\she can enter the winter Paralympics....who knows....maybe one day....we might even have two children competing in the olympics and Paralympics in the future. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>Follow our journey on:</u></b></span></div>
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<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;"><b>Twitter: afarmandababy</b></span></div>
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<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;"><b>instagram: afarmandababy</b></span></div>
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<span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;"><b>facebook: @afarmandababy</b></span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com0tag:blogger.com,1999:blog-5791281193505634208.post-85053114533176777282018-02-20T08:26:00.001-08:002018-02-20T08:26:35.970-08:00Baby feet <div style="text-align: justify;">
<span style="font-family: Arial, Helvetica, sans-serif;">I have always loved baby feet. As far as feet go they are just the most adorable little things. I remember at my 20 week scan the sonographer putting the probe on my belly and saying "I just love baby feet, they are my favourite part to scan", low and behold the first thing we saw were two little feet. I noticed one foot was clearer than the other but didn't think much of it as I am definitely not a pro at ultrasound scans and know babies can manage to hide certain parts of their body and be tricky customers. We had a trainee monographer who was previously a midwife and was so lovely. I don't mind having students practicing their skills on me, and if anything see it as a more thorough scan. I noticed that she seemed to be scanning for a while and was struggling to get a good view of the feet, it was at this point her mentor took over and did the whole scan again (obviously much faster) and pointed out all the vital parts. Again she struggled to get a proper view of the feet, but baby was having a good wiggle and kick, she asked us to go for a walk and come back in about 5/10 minutes. We had to do this with my daughter to get her untucked form the corner of my uterus to try and see the kidneys and bottom of the spine. So we took the walk we did the time before and came back to sit down.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We were called in again very quickly and sonographer went straight to the legs and feet. She scanned for about 5 minutes and I just enjoyed seeing my baby wiggling around. Shortly after she stopped scanning and turned to us, put her hand on my leg and said "Theres no easy way to say this, but it looks like your babies foot hasn't developed properly" she reassured us that everything else appeared to be perfectly fine and formed but we would need to go to St. Georges for further in-depth scans to just double check ... this is where I just burst into tears. Tears I had never cried before, they were uncontrollable and took my breath away ... I blamed myself. It's my fault. Was it because of the meds I was on? was I not looking after myself enough?. I just never thought I would be in this situation. I mean who does? Your 20 week scan these days is known as the 'gender scan' rather than the anomaly scan.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">From my previous post this is something that a few mums messaged me about. They said at the 20 week scan you just don't think your going to be told something is wrong or different with your baby, your asked "did you find out the gender?" by excited friends and family. Don't get me wrong its an extremely exciting time, after waiting 8 weeks from the last scan and knowing you won't see your baby until its born, the 20 week scan is probably the one that is most looked forward to ... I know I was super excited but also really nervous. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So, off we went to St Georges on the Friday before Christmas. My dad drove us as we had been advised that the parking is a nightmare and in hindsight the stress of not having to park was just what I needed. We sat in the waiting room, for what felt like ages (and it was, they were running over an hour late). I looked around the room at all the families there and wondering what they were here for. Being very British I didn't think it would be appropriate to strike up conversation with those around me. Why do we do that? It could have been what we all needed. Most of us did that awkward smile and "hi" as we squeezed into a seat and quickly got our phones out ... the classic waiting room pose. Once called in we met a lovely lady who started scanning and asking the usual questions and checked we knew why we were there. Once again it confirmed that everything was perfect with the baby and it was just the foot, obviously the baby had to have its feet by its "bits" - we didn't want to know what we are having and spent a lot of time looking away! We then met the professor who did another full scan, he flicked onto the 4D setting and my heart melted. Seeing the nose, lips and the baby all curled up, I just wanted to kiss my baby, tell it everything will be okay and its already the most beautiful little monster around. The professor showed us the foot in 4D but baby had its ankles crossed and we didn't get a full view, but I could see the foot was smaller than the other and that were was definitely one big two and what looked like a diagonal line down the foot (if that makes any sense). The professor was brilliant - he told us that the ankle couldn't be seen properly so we will have to wait and see what the function is like when baby is here. We will be put in contact with the paediatric orthopaedic and plastics team once baby is born, however there is no urgency and nothing will probably be done until the baby is walking. The NICU nurse in me cringed! I just want dates, times, appointments, everything now. I want a plan ... BUT the rational mum side of me was relived that as nothing needs doing now then it is not that bad. We were sent away with no further follow up and to continue as a normal pregnancy - brilliant news but I' m tempted with a private scan just to see the baby and its foot before its here.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I think being in my line of work does make you realise that families do go through the heartbreak of learning their baby has something wrong, whether its a heart defect, something wrong with their brain, the baby is to small, the placenta isn't working, the list could go on. I always wondered how these parents seem so "okay" when their baby is born. Another mum said that after her son was born it was a little bit easier being able to actually see him, see how he was doing and start helping him. I have no idea how you would come to terms with knowing your baby has a congenital, genetic, or syndrome that is life changing. I am in awe of these people. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The next few weeks after my 20 week scan I don't think I really accepted the news, I spoke to certain friends and family about it and said what I felt were the right things but deep down inside I just couldn't digest the information. I noticed I'd look at babies feet a lot more at work, id look at my daughters feet more than usual, I couldn't shake the feeling of what it would mean for my kid being different. I worried about what others would think more than anything ... I'm now in that place where it is their own problem if they don't like it.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">(I couldn't find any pictures of my daughters feet but here are her new shoes 😍)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">In my last post I mentioned I wasn't ready to look up support, or look up much to do with missing digits. well I have had a little break through, I have added some pages on instagram about kids with missing limbs. Theres a heavy focus on arms/hands missing which is affectionately known as a fin (which ill add I find adorable and is based around the fish in 'Finding Nemo' with a poorly fin), there are support groups for this but I'm struggling to find any for feet and toes. I am aware that having an arm\hand thats missing is more obvious than a foot and getting the word out there is so important to normalise it, as it is normal - uniquely normal 💛. Hopefully in due time and having time to research I will find some more information to share.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Now, I just want to say <span style="color: magenta;">THANK YOU</span> to everyone who has read and shared my previous post. Please keep sharing and help me in my search for other families with kids with missing limbs whether it be a fin, a flipper, a finger, a toe!</span></div>
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<br />afarmandababyhttp://www.blogger.com/profile/17265809512864094777noreply@blogger.com1tag:blogger.com,1999:blog-5791281193505634208.post-53496241875248491552018-02-15T10:19:00.000-08:002018-04-22T02:22:34.386-07:00Toddler and a bump!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">💛Hello and welcome to my blog💛</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm Steph and this little bundle of joy is called Izzy who was born March 2016 - we have another one on its way and we have left it as a surprise to find out what we are having</span>.</div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; text-align: justify;">I have decided to write a blog to try and talk/connect with others who have had a baby born slightly differently. At my 20 week scan the sonographer noticed that my babies left foot hadn't developed properly. It looks like the big toe is there but not the other 4 digits and some of the foot where the digits are missing. Although this is not the worst thing (I know there are many worse things out there being a NICU nurse) I was devastated. I felt like I had done something, had a missed a sign? did it happen when I fainted? had I been drinking too much caffeine? what had I done? ... the truth is, I had done nothing but I still felt so guilty. We went to St. Georges hospital and were scanned again from head to toe. I know they were looking to rule out any cardiac, renal, spinal, brain problems and were also looking for any midline changes such as a cleft lip. Luckily we were told there is nothing else and the probable reason for the foot not developing is that my placenta threw a clot and where that clot ended up nothing grew from that point on. Hearing this I felt extremely lucky that we actually had a baby as that clot could have ended up anywhere. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I must admit it still hasn't completely sunk in but I am getting there. I prefer to deal with problems head on and waiting until this baby is born to see what the foots like and what needs to be done is the hardest part. 8 weeks on and I actually feel like I'm bonding with my baby, I' m starting to enjoy feeling the hiccups and taking note of its little routine. I know I will love this baby and the foot is such a small part of its identity, however some days it feels like it could be its whole identity when I have a bad day....usually when I think to far into the future and worry about school bullying and how hard it is to be a kid with ten fingers and ten toes, let alone one with ten fingers and 6 toes!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm in an extremely lucky position and have A LOT of support from friends and family, but also from my work. My colleagues who I have told, have been so good and supportive and have given me so much personal and professional advice. It helps knowing one of my team will come and see baby for its baby check.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Anyway I'm sure the foot will be the least of my worries with a newborn and a two year old! Izzy was such an easy baby and so far has been a pretty easy toddler. We have entered the tantrum phase, but it hasn't been that bad. The world of disciplining is confusing but we are muddling through. Most of the time she is a cheeky, funny, active little girl. She loves eating and the other night was dreaming about cake and looking in her cot for it 😂. We also enjoy a dance session when we are cooking dinner and at dinner time, Mummy and Daddy usually have to have a little boogie whilst having our food. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If you have made it this far - Thank you! any advice or stories would be fab. At the moment (as far as I'm aware) I don't know anyone who has had anything picked up on a scan or has a child with missing bits and it would be great to hear some stories and be pointed in the right direction for any information 😀. I have been given some information for REACH, I' m not ready to look through here yet but I like to have a collection of information for when I' m ready.</span></div>
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