What a day!!! I am so glad it is over. I woke up this morning with big knots in my stomach. I was so dreading this day. The vials were in the fridge...everything was set up to start the treatment but I just wasn't ready. But would I ever be??? I just felt so overwhelmed, exhausted, stressed, sad... There is a list of things I want to do with Sophie this summer. So many things that I know she would enjoy. So many things I am now going to have to postpone. The thought of what this drug does to her just makes me feel so sick. I don't know why this drug over others. All the drugs have their side effects. I guess this one is just so visible. I see on the outside what it does to her body. The other drugs are just these little pills that she takes that hopefully will stop her seizures. I feel so bad for Brandon to have to give Sophie the injection and I feel so bad for Sophie to have to receive them. The other drugs are painless. Sophie loves taking her medication. I put all the pills on a plate and she just picks them up and pops them into her mouth like candy. I am so lucky that she is such a great pill taker.
Back to ACTH... the nurse arrived a little after 5pm. She went over all the paperwork and then it was onto the injection. I drew up the injection just like old times and handed it over to the nurse. I held Sophie down while the nurse gave the injection and Brandon watched. Sophie screamed and cried and tried to wiggle her way out of it. ACTH is a gel and it takes awhile to push all of it in. Then I immediately picked her up and we went outside to play on the swingset. I sat on a swing and she sat on my lap while I sang a song to her. She felt better in minutes. On the other hand, I just wanted to crawl up in a ball and cry. I just feel horrible. I just can't shake this awful feeling I have inside me. I have to take her out of preschool. She LOVES preschool. She gets so excited when I tell her in the morning that we are going. I hate that I have to take that away from her. But potentially I could be giving her so much more. Seizure freedom. Please pray that this will work.
Back to ACTH... the nurse arrived a little after 5pm. She went over all the paperwork and then it was onto the injection. I drew up the injection just like old times and handed it over to the nurse. I held Sophie down while the nurse gave the injection and Brandon watched. Sophie screamed and cried and tried to wiggle her way out of it. ACTH is a gel and it takes awhile to push all of it in. Then I immediately picked her up and we went outside to play on the swingset. I sat on a swing and she sat on my lap while I sang a song to her. She felt better in minutes. On the other hand, I just wanted to crawl up in a ball and cry. I just feel horrible. I just can't shake this awful feeling I have inside me. I have to take her out of preschool. She LOVES preschool. She gets so excited when I tell her in the morning that we are going. I hate that I have to take that away from her. But potentially I could be giving her so much more. Seizure freedom. Please pray that this will work.
3 comments:
Elaine,
Boy do I remember the ACTH days! Sophie sounds so much like Ava's story in quite a few ways. I actually begged my neuro for another round of ACTH....but he didn't budge.
I really hope this helps Sohpie become seizure free again.
Rebecca
ava-labonte@blogspot.com
Reagan's nurse gave her the shots very quickly (quicker than I would have thought she should have) but Reagan never had blood, a bruise, or anything from this nurse. Then we had a new nurse that came out and did the shots very cautiously (nervously) and Reagan turned black and blue!!! It was horrible!! I know you're probably having to use more than we used for Reagan...but my advice for your husband would be to just commit to it (be confident) and do it quickly. Are you using the numbing gel?? We always put it on Reagan about 1hr before the shot (and covered her leg with plastic wrap to keep it in place). I'm not sure how much it really helped Reagan...but for some kids, they can't even feel the shot at all. Worth a try if you're not already doing it!! She's in my prayers!!
Yes reagan is right. Doing the shots quicker will hurt less, will not bruise and no blood.It' still an awful thing to have to think about sticking your child everyday. It will be over soon and hopefully get rid of these seizures. Praying for your family.
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