Friday, 7 October 2011

Promised pictures

So last time I posted I said I would put some photos in.  2 months later and here they are :@)

We went to Florida in the summer because Evan really deserved a break.  No physio the whole time :)

As you can see, I should have stayed at home and dressed in character costumes, it would have been much cheaper

 When we returned we had a fabulous party for Evan's birthday.  Evan couldn't wait to get into his pirates outfit.  He was able to get much more involved with the games, becasue he is much more mobile now.

Evan has started full time school and here he is the first week.  He loves it and is integrating really well.  The other children push him on and he has managed 39 independent steps so far.   He is growing all the time and this tends to set him back, plus he has hypermobile joints which really makes it twice as hard for him to progress.  However, he can do many things he couldn't previously such as horseriding:

We would never have put him on a horse before surgery, he would have fallen off and this was a big horse.  The reduced spasticity in his legs means he can really work the right muscles to stay sitting.  He is also doing well at swimming, although both horseriding and swimming are out of the window for 6 weeks as he had a minor operation on the weeked, which means both are banned.  There is also a big improvement in his cycling as well; no more stop start, stop start.

We have been for a review of his hips which was the main reason for having the surgery.  It was felt that if it was delayed the hips may dislocate.  The good news is that there is an improvement, so looking good for no further surgery there.  If nothing else happens we have this to be thankful for.

The only concerns we have at the moment are with his joints, which are extremely bendy.  This is hampering his development.  We have discussed with Dr Park and will be heading back for a week in St.Louis in April next year.  We will see Dr Park, Dr Dobbs (Orthopedics) and also have physiotherapy.  We are looking forward to the return visit to get the expert help, but also to see all the people at Children's Hospital that have helped Evan.

Next update when we have something brilliant to tell you.