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!
3 comments:
Hang in there. Daniel is so sweet. Try to get a litlle "alone time" even if it is just a few minutes for a walk. Ask your husband to watch Daniel and go out for a little bit.
I'll keep all of you in my prayers. You are amazing!
Susan,
mom to Paul, 9 years old and Anna, almost 3 years old, spastic diplegia cp
god, i know what that's like. my son has been diagnosed with TSC since he was 3 months old.
about the seizures. yes, he was having infantile spasms. and they didn't even stop while we were giving him that medicine that we had to get from canada or mexico (because it's not approved by the FDA).
so when he was three he got a VNS implant. whadaya know...that little sucker worked like a charm. we're so fortunate that he got one too because not too many surgeons are willing to risk it with a three year old.
infantile spasms are serious business. we noticed regression in our son immediately. and even some depression. every doctor we have spoken to has told us that the infantile spasms are the most devastating type of seizure to the brain.
i am praying for you and daniel to pull through. you will.
Seizures certainly suck big time! MY little one has CP, Hydrocephalus and since last year seizures. Yes they suck. Don't know when they are coming, can't prevent them the helpless of it all. They are scary and the recovery time is just as bad, you are on hold and alert 24/7. I can't help with words of wisdom just know others are out there too! Some in better situations some in worse situations all I do it face what I can when it presents itself and do the best I can. I am sure you do too! God bless you all.
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