zaavan co. and beepBo

Friday, June 09, 2006

Tuesday, June 06, 2006

i'm a walkin' fool!

every thursday zaavan goes to the courage center in stillwater for physical and occupational therapy. this is him with his PT jessica. last week we put zaavan in a contraption called a gait-trainer. it is intended to help him "walk" by giving him support in the areas he can't control himself. the idea is to get zaavan to lift his legs and push himself forward. zaavan has been using a gait-trainer off and on at school and home for over a year with......less than successful results. ok, i'll be honest, he seems to hate it and has never even tried to push himself forward or backwards! until last week. i don't know for sure how, why, or what happened, but he was actually making attempts to push himself. it was all i could do to keep from breaking out into tears and looking like a blathering idiot in front of complete strangers. i could barely hold it together enough to snap a few photos. anyway....he tired of the gait-trainer fairly quickly (after about 15 min.) and there was no recovering once he started whining. but for a few brief minutes he actually tried to do it! he was trying to walk! and he was excited about it! i started clapping for him saying "yay zaavan! you can do it! go go go! you're walking!" and he looked at me with a big smile on his face that was full of pride, as if to say "i knew i could do it!" it was only a few small steps, pushes really, but each one was a giant leap for zaavan. my cup overflows with joy and anticipation of what his future holds.

This little pill

this little pill is called Dilantin (dye-LAN-tin). it is an anti-convulsant that zaavan has been taking in one form or another, pretty much since he was born(except for a short period of time before he got his g-tube when we were experimenting with a different med.) this little pill is one of four anti-seizure meds that zaavan takes daily. since the induction of the ketogenic diet, he has taken this little pill 3 times a day. this little pill is a BIG PAIN!! in order to administer it, we have to carefully break it open with a pill cutter, which is very difficult because it is secured with a pink band intended to keep people from opening it, and gently tap the contents into a medicine cup being cautious not to spill any. we then, with a syringe, measure out the exact amount of water needed to disolve the precious powder after it is released from it's gelatin capsule. sounds like a piece of cake so far right? well now we must stir the contents gently until completely dissolved and draw it into the syringe to administer it through zaavan's g-tube. sounds easy? IT IS NOT! for some reason the contents of this little pill are almost impossible to dissolve, do not incorporate well with water, and stick to absolutely every surface making it extremely difficult to get an accurate dose. not to mention, taking a painfully long time. jon, myself, and zaavan's PCA's have spent upwards of 10 minutes, 3 times a day, just trying to accurately and correctly administer this one little pill!
6 weeks ago we started to gradually taper down the dilantin. zaavan has been nearly 3 months completely seizure free! his neurologist gave the OK to get rid of dialntin, as tolerated. if successful, we can move on to getting him off of one of his other anti-convulsants.
i'm very happy to say that we have succesfully weaned zaavan off of this little pill with no breakthrough seizure activity, and as of now, he has gone over a week without it! still no seizures! this little pill is going bye-bye. hopefully forever. and we are not going to miss it one little bit.