“Our goal is too keep working hard and wowing those who don’t expect these little changes in Alfie”
Alfie has attended Newcastle RVI today. They have asked Alfie to show them his walking with and without wearing his splints, whilst they watched they were feeding back information to one another, this wasn’t good news, actually it wasn’t any different to what I’d usually hear but one things for sure me and Alfie have worked our bums off to get this far and sometimes you have to hear what you don’t want to hear; how crouched his legs are, walking on his tip toes, legs banging off each knee and scissoring a little. They mentioned about SDR and what Leeds had mentioned about Alfie’s future relating to splints and at this appointment they told me Alfie will still need to wear splints after SDR, to some this might be the end of the world but to me these help support Alfies ankles and by far he has great movement in his ankle muscles due to him constantly wearing them so to me it’s a bonus even if his feet need this support. They then took lots of measurements of how much Alfie’s muscles can position in his legs/adductors/abductors/hips etc . At first they said he was quite weak, and we had a conversation about our realistic goals after SDR because there is a procedure to go through to get a child up and walking unaided, it’s not straight forward! There is an enormous amount of sheer sweat, stress, tears and hard work to get to that position and it all depends on the child’s body too but to be fair Alfie has conquered and continually surprises professionals even when there not intentionally putting a dampener on conversations but we do expect not everything to run smoothly on the journey, there are bound to be ups and downs, for all of us life is a rollercoaster but we stay focused and work that little harder each time.
Our goal is too keep working hard and wowing those who don’t expect these little changes in Alfie. Therefore them saying he is weak, Alfie then went on to show a couple of improvements they didn’t intend to see which showed them that actually Alfie does have a little strength in certain muscles and it isn’t all that horrible spasticity that we don’t want. Working hard to improve muscle strengthening is vital to be able to have SDR).
They have told me to continue with the fundraising for the SDR procedure. They have offered botulinum toxin injections in his hamstrings and adductors to help in the meantime. Having Botox should also help correct Alfies walking too, more of a flat foot, no knee knocking, straighter legs for the short term until it wears off… This will give Alfie the chance to improve his muscles as I will then be able to work even more on Alfie to get better stretching and muscle strengthening out of the hamstrings and adductors along with all other muscles we continue to work on because the more natural strength Alfie gains in his muscles the less chance Alfie has of going back over when SDR is performed and the spasticity is taken away, we both want Alfie up and walking, kicking a football about with his friends, being able to dress and undress himself, Alfie learning to be toilet trained, independence!
All that we automatically take for granted is impossible for Alfie to do, which in fact before he tries to attempt any of these Alfie has to constantly have to think about every position and movement before he undertakes these mammoth day to day life skills we all get up and do so easily without thinking about. The Botox injections will be given around February 2017 time which aren’t pleasant at all to be honest, it’s heartbreaking to have to pin Alfie down and hear him screaming in so much pain but being able to pick him up after, cradle him and tell him it’s all over, his legs are going to be easier to move with less pain in them etc…  Cuddles to one another, certainly makes this rollercoaster ride much more bearable. Alfie keeps me going just as much as I do him. In this together, until the end. He is my inspiration. I am proud to call him my son. With help and support from the public we can make this life changing operation achievable.
#teamalfie #SDR