boys

So an update;

The second week of physio went well, the kids from the 1st week were all on the same floor of he patient accommodation and it was shrove tuesday so we had a pancake party. It really helped them with their PMA! The end of week assessment showed an increase of 12/30 to 28/30 where an average child his age would be 30. He has to continue the physio at home for 6 months but i can already see him struggle with controlling the exercises. The other interest of the week was we saw OT who looked in detail at his hands, trying 3 sorts of splints before deciding they would not work and he needs to gain some strength first. All his thumbs joints and finger joints are hypermobile and his thumb even dislocates under pressure. She took photos in the end of his very unusual hands for her teaching! Not great news for Josh though.

patient accom lounge

bedroom

by the gym

Aaron held on off steroids whilst I was away which is what we had prayed for but did have a little blood the day I returned! Since then his stools have shown the decline we are becoming used to and he has a little blood most days.

top of the bus in London

We saw his Dr last week to make a plan earlier than before assuming he will continue his downward spiral. She has taken tests and the plan is to re-scope before Easter and if he declines too much before then we can 1st add salofalk then 2nd budesonide (steroid) again but for longer. If he needs steroids he needs a Dexa scan to look at his bone density, she will hopefully arrange this for when he is in having scopes or at follow up. There is also the option of more tube feeds, but it is not one we prefer right now. The question or us is how to keep him stable after treatment.

A Beaver Scout