Well we only have four more weeks of these ACTH injections left. It has been the most trying time we have had as parents! Hands down!! Trust me I am thankful that so far its working, no seizures!! And of course I am thankful he hasn't gotten any type of infection while on this. But the crying is excruciating!! My heart breaks for him and us and the other kids! I was explained it this way the other day--- I was told athletes who take steroids suffer from steroid rage and that Kadens dose of steroids is one of the purest forms and in a super high dosage so he basically is suffering from steroid rage and has no other way to express this except by screaming. He is swollen and miserable! We are weaning him off slowly so I hope to see improvement soon.
Yesterday Kaden had a super busy day! We had an appointment with the rehab doctor, physical therapy, labs drawn and a baby massage therapist who came to the house. Brandon and I love Kadens rehabilitation doctor. He is caring and understanding. He really takes his time and listens to us. Yet at the same time I dislike him!! He makes us face reality and uses that phrase over and over " The reality is......" He uses lots of numbers and statistics. And as much as me and Brandon hate to admit it, he always shoves reality in our face and it HURTS!!!! Maybe that's what we need.......I think most of the things he tells us we already know....... but they are unspoken. We don't talk of them with each other or with others. He even briefly wandered away from Kadens health issues to talk marriage with us. Telling us how high divorce rates were for couples with a special needs child. I don't think he told us this to scare us but I think to tell us to make time for each other which has pretty much become impossible lately. But I am hopeful! I will always be hopeful and that is why I wont write down those statistics in stone and put Kadens name down next to them!! I say this but at the same time I must be realistic. I know Kadens conditions are many and the prognosis not good but Kaden is in Gods hands and has our love every single day..........that's gotta be enough.
Tuesday, January 5, 2010
Kaden has now been on the ACTH injections for 3 weeks. The wonderful news to all this is that the seizures have completely stopped!! Yep, after about the fifth injection they were gone! The bad news...... he is completely miserable and so are we!!! The ACTH has tons of side effects!! One of the very common ones is irritability!! I don't think that word describes how Kaden feels. Not even close!! If screaming for hours and hours each day and sleeping 5-6 hours in a 24 hour period is irritability then i would hate to see what agony looks like! We are exhausted and so is he. We have had to call doctors at home over this it has gotten so bad. Our pediatrician sent us straight to the hospital the other day cause he was just sure something else must be wrong. But after all the tests were done the consensus was "irritability". We now have him on a sedative to help keep him a little calmer but this really has not done a thing yet.
Today neurology told us we had a minimum of 6 more weeks to go. I am tired just thinking of that!!! Nothing we can do but trudge forward! Kaden has a swallowing evaluation next Tuesday and then will see a speech pathologist once a week. Not for speech but to try and help get him eating better. He has low musculature in his tongue we are told from the CP. This makes it difficult for him to eat baby food. Hopefully they can give us some pointers to get him eating better.