Updates

We are about one and a half weeks into his Botox and we finally see some effects.  I really didn't notice anything huge, but when Phoenix's PT was here the other day I told her that his stamina for walking really isn't the same.  And he has to sit and take alot more breaks.  She explained that he was using alot of his high tone for walking and strength so take that away and his little legs turn to jello.  Its like he has to learn to walk all over again and strengthen up those muscles that got lax with all the high tone.  Today I saw it the best, I was working with him walking along the sofa, and I think I got more of a work out trying to hold him up and get him to walk.  Also while stretching I was actually able to get his legs 90 degree's to his body which I have never been able to do. 
We are trying to find more therapy for him, but with his insurance its proving to be a hard task.  Most places around here don't accept it.  And if I were to change it, then we would have to change his pedi or go down to CHOP instead of Hershey.  And we are still in the approval process for his wheel chair so its just a mess.  I have to step up and be his extra PT and man does he hate when I bring out the braces.  Poor Tristen has to play by himself more and I'm just stretched out thin.  This week I plan on calling a few places that are about an hour away and at least getting him on the waiting list.  One day this past week after a failed PT intake I just broke down sobbing.  We get him the Botox and can't find the most important therapy he needs.  Then I thought to myself, I'm not going to let my boy down and am just going to work real hard on him and do the best I can.
Thursday we go back and talk with the physitrist, and the ortho surgeon to set a game plan.  Then I'm guessing its going to be a quiet few months till his next treatment.  So alas we are busy and just trying to get into our new groove.

On my brothers front, he completed his first week of chemo.  His body reacted really bad at first so they had to modify the procedure and give him counter meds.  The next day went alot better.  This is his off week, then he starts up for 3 days again.  He is tired but in good spirits.  The doctor checked his lymph nodes (where a chunk of the cancer is)  and after only a week it has shrunk in size.  So keeping our fingers crossed!

I'll leave you with a few pics of my awesome boys. :)




First sledding of the season.




All dressed to go play in the snow




Block tower almost as big as he is.




Train around the Phoenix.