A long overdue update…

Life is plodding along. Abe is doing 2 or 3 physio sessions a week, goes horse riding once a week and has just started 1-2-1 swimming lessons.

We’ve had some great physio sessions and some absolutely shocking ones. Some days he can be very cooperative and we all have a great time (his physiotherapists are very fond of him despite him telling them both that they are not his best friends!). At other times it’s like extracting teeth to get him to do anything. I find those sessions very hard, as we know that Abe is capable of so much more than he is prepared to give and it is beyond frustrating. We knew the post op recovery and strength building would be tough, and it’s during these times that my emotions get the better of me and I feel desperately sad that we have all this to deal with. For me the hardest part is having very little control over it all. Gone are the days where we could distract Abe with a different tactic, or entice him with new game and unfortunately the chocolate buttons are starting losing their appeal. It has really dawned on me that we are doing all we can for Abe and now it’s really up to him to find the determination and drive to get walking.

On the positive side, Abe has so much fun horse riding and loves it when he is allowed to do a little trot. I’m currently trying to find another lesson for him, as it’s great therapy without him really knowing it. Abe swims/chats with his instructor Sarah on a Thursday afternoon and despite my fears that he would not want me to leave the poolside he has taken to it like a duck to water and has an absolutely fantastic session. Abe automatically wants to use his arms and legs when Sarah tells him to kick but she is working on getting him to kick with just his legs and not get his arms involved, for now.

Today we went to the hospital for an appointment with the Orthotist to get Abe casted for some new splints. The ones we got in St Louis are amazing, unfortunately his feet are growing and soon he’ll need new ones. Abe wasn’t on his best form but did very well and we got some good casts. It’s not yet decided what we’ll get as we can’t get bespoke Cascade DAFO’s with the NHS and the alternatives will be slightly different. We are hoping that we will be able to get two sets of splints, as we are working with a mixture of both to build his strength and to improve his walking pattern, but NHS resources and suppliers are limited. My fear is that the new ones won’t be as comfortable, or they’ll provide different support and at the moment his orthotics are key to his progression. If the NHS ones won’t do the job, then we’ll go privately. Let’s hope we don’t need to go down that road. Fingers and toes are crossed, it will be one less thing to worry about.

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