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Orthopaedic Surgeon

Abe had an appointment yesterday afternoon with Caroline Edwards, an Orthopaedic Surgeon at Southampton General Hospital. Caroline has an excellent reputation and we have been waiting for an appointment with her for quite a while. She has seen a lot of children who are post SDR and we were keen for Abe to be seen in her clinic. Children with cerebral palsy are at risk of hip dislocation due to tightening of the muscles caused by spasticity. Abe doesn't have the spasticity anymore, but he does have weakness in his muscles, specifically his left hip. It was a long afternoon. Abe had some hip x-rays, was assessed by the physiotherapist and then we had a consultation with Caroline and her registrar. Abe was very patient, we did lots of waiting around - it helped that he was allowed to play Angry Birds Star Wars as much as he liked! The assessment went well. Abe's hips are within the normal range and although he has a small amount of tightness in his hamstrings just behind the knee, they are pleased with him and don't want to see us again for a year.

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18 months post op!

It's been a while. What's been going on with Abe many of you have been asking.... Abe has now started pre-school. He's going every morning, and is exhausted! We are trying to make sure we keep going with all his therapies at the same time and I suspect we may be overdoing it. He has horse riding twice a week, physio, and swimming! Abe has continued to make steady progress over the summer, he's still walking with support but he is much stronger. He has new splints, which are excellent quality and give him a great heel toe strike. However, he still has weakness in his left hip. This weakness is quite noticeable with the new splints as he hits the ground with his heel first and then the hip cannot control the movement so his foot tends to naturally rotate inwards. We are considering some lycra shorts which will give some support to the hip and encourage a better pattern. Two weeks ago, Abe received some new sticks, which are like traditional walking sticks, but are very light and he is taking to them very well. His strength, balance and independent walking have improved considerably already. We are trying to motivate him to walk independently at home, and as a reward we told him we will buy him a remote control helicopter. He is now very wise to these 'bribes/motivational techniques' and has tried to talk me into buying it after a good swimming session!!! He's a little monkey. Abe has recently started asking more about his Cerebral Palsy. He is aware that most other children can walk on their own and has asked when he got his Cerebral Palsy, and when will it go away. It is very upsetting, but we hope some good will come of his awareness as he might put in more effort and push himself a little more. We would like to think that he will not be beaten, if he is anything like Gavin and I, nothing will stop him!

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A good week

Abe's first week at The Footsteps Centre has gone really well and I think he's even enjoying it. I can already see an improvement in his core strength and his confidence is rising. Very pleased so far...

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Bath time

Abe climbed out of the bath 'all by himself' tonight!!!! I can't quite believe it. He got a little stuck half way over (ouch) but he was so proud of himself!

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Another busy month lies ahead for Abe. On Friday this week we are off to the London Orthotics Clinic in Kingston to get assessed for some new splints. Next week we start a two week course at The Footsteps Centre where Abe will be having intensive therapy for 2 hours each day. We are hoping he builds strength and confidence which might just give him the push to walk independently at home.

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Abe had a lovely time at The Vyne recently. He had so much fun with friends Luke and Benji, but was exhausted from lots of walking!

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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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