When we started adopting children with special needs, we did it with the full knowledge that there were going to be times they would need extreme care, be in the hospital, need surgeries and in general just be a lot of work. We knew there would be times of great joy, times of stress on the family and times of great worry. These children God blessed us with, are worth it all. Where to start...???
Antonio has Hypo tonic Cerebral Palsy. His muscles are so tight, that as he has gotten older, the doctors worry about them snapping his bones when he contracts them. He is so tight, that it is very hard to dress him and diaper him. He gets the "generic brand" of Botox shots, in his tightest muscles, every six months or so, to give his body relief from the extreme tone and pain, that tone causes to his joints and body.
His last appointment to get those shots was canceled because Medicaid would not approve it. We resubmitted and waited. They finally only approved, if we used the name brand of Botox. No big deal. He was so tight by this time we just needed it done. Tim took him in to have it done and Antonio was so tight and had so many areas that needed it, that the doctor used the full limit amount of Botox possible, for Antonio's body weight. Antonio had never received that much before. Right away the next day I started to see changes and slowly day by day Antonio slipped into a non-responsive semi-vegetative state. As soon as I realized what was happening and that this was from the Botox, we jumped into action. The doctor wanted to do tests to rule out anything else but I knew what this was. I am his mom and have seen him in almost every situation from shunt failures to sicknesses. They drew blood-work to rule out infection. It came back perfect. They ordered an emergency CatScan, that Medicaid denied to pay for, to rule out a shunt failure. I am still trying to get the results from it but imagine it was fine or they would have called and rushed Antonio in for surgery. This degrade in Antonio's health is from to much Botox or from using the brand name instead of the generic.
The good news is, Botox effects peeks at 7-10 days and we are past that. So he should not get any worse but he can not move at all. He could not move much of his body before but could move his right hand enough to play with is Ipad by using his thumb or knuckle. If we put a marker in his hand he could color. Now he can not safely eat. He also can not speak. Praise God we have his g-tube to feed him till this wears off. I feel so badly for Antonio. He sleeps most of the day and night. He just stares at us blankly when we speak to him. He is usually such a chatter box. Once or twice a day he may say a weak yes or no to a question. Since he was a little boy we could always put him on the potty in the morning and he would do his business for the day. He now can not control his bowels. I know deep in my heart he is in there and coherent. He opens his mouth when we go to brush his teeth and a few times a day he will acknowledge a question we ask him. But mostly it is just a blank stare.
We are trying to keep things as normal and upbeat as possible for him right now. We just talk to him like we always have and include him in everything. There is absolutly nothing he can do now, so we just keep playing his favorite movies for him. I also put him in front of his turtle tank and gecko tank, to watch them, like he always loved to do. I know he is in there. I know he is thinking but just cant respond, so I went out and bought him a new lizard to cheer him up inside. Something new to look at and enjoy till he can talk and respond again. He loves his reptiles.
Please keep Antonio in your prayers. He is one of the sweetest and kindest, pure souls I have ever known in my whole life. He normally has such a positive attitude daily, no matter what he is going thru and facing. A huge smile never leaves that young mans face. He is flaccid now. He has always love the Lord with great joy and prays constantly for others. We are trusting in God for this to wear of quickly and have no ill effects on his future health.
James 5:16 Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much.
May God move mightily in all our lives, as we live for Him.