I don't even know where to start right now. Daniel is still having seizures, can't get them under control with meds. They aren't horrible Grand Mal seizures, they seem to still be infantile spasms, which in some cases are worse than the big ones. He seems to be having just a few a day, not hundreds, but still they are enough to throw me for a loop.
So the talk is now getting another Video EEG, getting some preliminary tests done and getting Daniel started on ACTH. We are schedule for being 'ON CALL' so if there is an opening for the Video EEG prior to our appointment in September, we are to run immediately there.
Daniel has a sinus infection right now and is on meds for that. Fun stuff, could be why his seizures are acting up. We go back to the pediatrician next week for his 2 year check up and start getting all the extensive testing needed prior to starting ACTH. Very overwhelmed right now, and not handling this new set up information right now. Crying a lot. Very down, but I'll do what needs to be done and hopefully we can get rid of these seizures again.
There are a whole battery of tests that they have to run prior to ACTH, then there is a hospital stay where they teach you how to administer the shots on a daily basis for 6-8 weeks. Have I mentioned before that I have never gone to medical school or given anyone shots before? Perhaps one of the kind doctors will come live at my house for the next 2 1/2 months to give these, and to also do all the tests that need to be done at home every few days.
I have heard, "God only gives you what you can handle" I think he made a mistake when he looked up my name and gave Daniel to me. I'm trying here, I really really am.
I received a really nice card from a woman that I met when Daniel and I went to Grand Rapids for Conductive Ed. Her son Joseph, also has CP but is older that Daniel. He did remarkable when we were there. He actually started walking WITHOUT his canes........walking with no support what so ever. He is amazing. Anyways, she sent me a card with a little story called "Mothers of Handicapped Children" it has made its rounds like the "Visiting Holland" story
but I have posted it to the site in hopes that it can make another mom feel good too.
It was so sweet of her to take the time to mail it to me. Thank you very much Julie!