Latest blog Prevention is better than cure is ready to be read online here https://www.fireflyfriends.com/uk/blog/prevention-is-better-than-cure/
I vividly remember bringing the last of our triplet’s home to join his identical twin and fraternal sister. It was such a huge relief to finally see our three gorgeous babies together again where they belonged!
Jacob stayed in hospital for six weeks (four more than Ben and Chloe) having been born 2 months premature. He has the most severe form of spina bifida which is known as myelomeningocele. Meaning his spinal cord and meninges were in a “sac” on his back. This couldn’t be closed until he grew bigger, so we had to play the dreaded waiting game
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It was amazing to be doing something 'hands on'
I remember sitting in SCBU with Jacob doing exercises given by the physio to help his feet which were turned inwards. It felt so good to be doing something “hands on” with him. After so much time was spent talking to him through the incubator. It is so hard to feel so distanced from your own baby. So, I was more than willing to do anything to help! This early intervention has meant he was able to be cast for splints when he was older without having any surgery.
Once his back was closed and a shunt put in to manage his hydrocephalus, he came home. And we were suddenly responsible for all his care. Despite my background as a nurse, this was really scary. I kept thinking “What if I get it wrong? What if I miss something important? How can I help?”.
We had brilliant support from community teams
Thankfully, we had brilliant support from community teams including nursing, physios, OT’s, dietician, GP etc. As Jacob grew and his needs changed, we would reassess and learn new activities to help him develop strength and prevent further disability. A big part of that was posture management.
All our family knows I am very particular about how Jacob is positioned. This has been the case since he was a baby and was fortunate to be loaned a set of foam rollers etc with Velcro. Much like Firefly’s “Playpak” which I didn't know about at the time to do some exercises he would otherwise have found very difficult. I used these every day. Usually doing stretching in the morning and then supporting him to sit upright in the afternoons. Jacob had a Pavlik harness on for hip dysplasia. I was always very aware of keeping his pelvis in the best possible position. This was not always easy with two other babies who were also growing in strength and learning to crawl over to “help” with Jacob. But I really do believe early intervention is so important.
It was pretty scary to have a two-year-old in a big wheelchair
Due to all the work everyone had done with Jacob, he was able to get his first self-propelling wheelchair having just turned two! He called it “raa raa” after his favourite show at the time. He was amazing in it! And the wheelchair assessor told me he was the first child she’d worked with that showed such a natural ability to manoeuvre. This was probably because he had a tiny little self-propelling chair, like Firefly’s “Scooot”, that he used every day. It was pretty scary to have a two-year-old in a big wheelchair which could go much faster than I’d have liked! He was a little imp and used to scoot away on me constantly!
Now that he is seven, his OT has offered me her sympathy We received difficult news that Jacob has scoliosis and lordosis of his spine. She said out of all her families, I always come to mind when she thinks of keeping kids in the right position as much as possible. I’m not sure if that was true or she was saying it out of kindness. But it certainly helped my aching heart! It feels very unfair that he is facing this new complication, but that’s life sadly. We are waiting to see what his surgeons want to do. If anything, to help his spine straighten a little which should help him gain back some strength he has lost.
I’m not suggesting it’s a magic cure, but it can’t hurt and will likely help
In the meantime, all we can do is continue to make sure he is well seated in his wheelchair, “GoTo” seat or shower chair. He does sit on the sofa with us because he deserves to have those experiences. But I do make sure he is well positioned and not “flopping” to one side or the other. Looking back, I am so thankful to have had the experiences as a nurse. I was able to understand the importance of preventing further disability wherever possible. I’m not suggesting it’s a magic cure, but it can’t hurt and will likely help. It goes without saying but please ask your child’s team for individualised advice on anything you can do at home to help. Good luck and enjoy that time with your little one(s)!
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