The Fight

Magic Boots

Jake has really been a trooper throughout this whole process, he can definitely tell that there is something different about the way we treat him, and all the poking and prodding that he goes through, but he has really been amazing about it all.  Case in point... the Magic Boots.  What the hell are magic boots you ask? Good Question.  Well, they are not really actual boots, and they are certainly not magic. They are orthotics that Jake wears every night, to keep his foot flexed at 90 degrees, this supposedly provides a stretch that will slow the degeneration of his muscles, stretching is a big part of what you are supposed to do.   As you can imagine, wearing these massive things all night every night for the rest of your life would be a massive pain in the ass, so upon the advice of other parents, we called them "Magic Boots" and told Jake how fun it would be to wear them.  funny the things we will do for our kids... Well, Jake wears them like a trooper, and now they are part of his routine.  If he doesnt put them on, he gets upset.  The problem is that when he wakes up really early, he clomps halfway to our room with his magic boots, angrily asking for them to come off... oh well, about as good as we could hope for i guess

Roids...

OK, so been a while since i have posted, will try to keep more current.  lots is going on.  So Jake has been on Deflazicort for about 3 weeks now, its really made a big difference in his behavior from what we can tell.  Funny thing is, the changes have been positive.  He has had a great attitude, and his energy level has shot through the roof.  I think it may have tempered off a little bit in the last week or so, but it certainly hasnt been bad.  Its almost like we have been giving him speed, he is so energetic.  We will see how long this lasts.  We were repeatedly warned about significant appetite increase, but we havent really noticed that too much, he was already a big eater, but not out of control.  We will see what happens, and keep our fingers crossed that the effects stay positive