Monday, 15 November 2010
Assessment Day !
We arrived at Childrens (as the hospital is affectionally known in St Louis) around 9am clutching our itinery of appointments. First one was to watch a dvd all about treatments for Cerebral Palsy. The dvd showed both advantages and disadvantages of all ending with a section on SDR. There was the option to watch a short film of the procedure but we opted out of that. Somethings are best not gone into! Leo then had an evaluation by Deanna (one of the physios) and Leo was filmed so Dr Parks could assess him against his application film in private. Leo was brilliant and happily did everything Deanna asked of him right up until he needed to have his flexibility measured, Leo was not impressed and refused to co-operate, I have no idea what he thought was going to happen but Deanna was so patient and eventually she was able to get everything she needed. We were then shown back to the waiting area to wait our turn with Dr Parks.
We didnt have to wait to long. We were shown into the room and were followed in by Dr Parks and his team. Dr Parks took a few minutes to manipulate Leos legs and to watch him walking.
He sat down and we waited to hear the prognosis.
Dr Parks suprised us when straight away he announced Leo was worse affected on his RIGHT side, ever since he was diagnosed we had been told he was weaker on the LEFT. He said Leo has amazing core and upper body strength and that we would see significant results post SDR. However he did say to achieve this Leo will need Heel Cord and Hamstring lengthening. The heel cord they are looking to do while we are here and Dr Parks is going to make Leo an appointment with Dr Dobbs (the orthopedic surgeon). Dr Parks also said Leo will need to wear a full leg brace at night on alternative legs immediately after the operation. He also mentioned that Leos feet may need to be plastered for two weeks to pull his ankles to the 90degree stretch. Dr Parks also said Leo will need to return between 6 and 12 months time. This prognosis may change after the operation because as Dr Parks said 'after the operation most if not all the spasticity will be gone and its only then we can say for sure what will be needed' However he is confident Leo WILL be walking independently at least a few steps by the time we return to the UK.
A few things have suprised us since being here, First is just how well Leo can walk with a K-walker, Those of you that know Leo will know his walker is like a mini zimmer frame which goes in front of him. Since Jack (McNaughton) let Leo have a go on his walker Leo is refusing to use his. With Jacks walker Leo can actually run, walk backwards and keep his feet flat. In fact last night in the hotel lobby Leo and Kayley were actually having races. After speaking to Dr Parks Caudwells have agreed that we can order one for Leo...delivery in two days. Jack is Leos partner in crime and l know theyre going to become very good friends during the time they will be spending here and probably for a long time afterwards. They share a lot of the same characteristics in fact they have been taken for twins ! Its really nice seeing them play together.
Leo is second on the list for the operation tomorrow so we will need to be at the hospital at 9am (1500 uk time). Dr Parks expects the operation to last between 4-6 hours and Leo will be in recovery for an hour before we are able to see him. During his time in theatre Dr Parks will make sure we receive an update every hour.
We will update again tomorrow..