Posts

N's little foot little update

Image
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. 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.  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 antic

Vanessa's story

Image
Vanessa shares her story about her gorgeous daughter ivy. Tell me abit about you? 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  2016 , and our second daughter Ivy in February of  2019.  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. What is your daughters limb difference? 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. When did you find out? 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… su

Amelias Story

Image
Tell me a bit about you? My daughters name is Amelia and she’s 2. What is your limb difference? She has about a 50% discrepancy and it’s currently 10cm, projected at full growth is 23cm.  When did your parents find out? I found out at my 20 week scan.  What help and support have you been offered? We have been offered support through Sheffield children’s hospital, of other families numbers to discuss which route we would like to go down.  What are the negatives about your limb difference? I’m always scared what the future will hold for Amelia, and maybe that’s a negative. Also sometimes the constant questions people ask me when I just want to enjoy days out with my children.  What is the best advice you could give to a family who are pregnant or have just had a baby with limb difference? I would tell someone who was pregnant, or just had a baby that your child will surprise you everyday and make you proud.  Have you needed t

Jades Story

Image
Tell me a bit about you?  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! What is your limb difference? 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.  When did your parents find out? 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).  What help and suppor

6 Things I have learnt so far in 2019

Image
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. 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.  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. Don't get me wrong it has been SO hard

Kimberley's Story

Image
Tell me a bit about you/your family? Our family is made up of me, Kimberley, my partner, John, and our son, 14 month old Thomas. We also have a crazy dog called Harper. What is your/your childs' limb difference? Thomas has left foot talipes, also known as clubfoot.  When did you/your parents find out?  We found out during an antenatal scan. Would have been around the 16-18 week mark.  What help and support have you been offered? When we found out originally at the scan, the information we got was extremely limited. The staff said that he may just need a couple of casts, bit of physio. They seemed quite dismissive of it. We didn’t realise the extent of treatment until after Thomas was born, and we met with his first orthopedic consultant.  What are the positives about your/your child's limb difference? Everything that involves his beautiful little feet is just that bit extra special. Watching him c