April has been a rough month for little Claire. She has been having seizures almost every day. On "good" days, she has 0-3. On "bad" days, she has 8-9. It pains me to watch her seize - her little arms raised above her head, her eyes blinking rapidly, her neck and head jerking rhythmically.
The worst part is that there is nothing I can do to help her. I try to talk to her and stroke her tummy while it is happening, repeating over and over again "It's okay, Claire, it's okay." But this is all I can do. There is nothing I can do to make it stop. I just have to time it, make a note of it in the seizure log I am keeping to share with Claire's neurologist, and move on.
Our next appointment is on Friday. I plan to sit down with her doctor and map out a game plan. For the past month, we have simply been playing with the dosages of the three seizure medications Claire is currently taking: Keppra, Trileptal, and Phenobarb. Upping one, dialing back on another. Claire's little brain obviously isn't responding to these three drugs in any combination, so I think we need to look at next steps. I have been doing a lot of research on other medications and treatments, and I am anxious to talk to him about the feasibility of each one.
Through my research, I have learned a lot about other families who are dealing with epilepsy, and my heart breaks for each one. It is such an ugly, horrible condition. At the same time, most of these families seem to be "making it," and some of them are doing it beautifully that it gives me hope that we'll "make it," too.
I am so glad you are finding some encouragement and inspiration for this tough journey you are traveling. Sometimes reading other families' positive perceptions helps implement their views into your life. Remember what I last told you, about how I get such a good feeling about you and Brad? Part of that has to do with the thought that someday you two will be bringing inspiration and hope to someone just starting out in their own journey.
ReplyDeleteWe continue to think of Claire and pray.
I have been thinking of you guys constantly. I am sad that Miss Claire is having to endure seizures. I have so many thoughts I would love to share with you; but in the same aspect, I can't find the right words right now. Know that I think and pray for you often.
ReplyDeleteSeizures are so frustrating. Your right, there is nothing you can do but be there for Claire. And the brain is complex. It's a journey, to put it lightly. Highs and lows, up and down, and then up and down again. One thing that has helped me, is to try to smooth out the ups and downs. To accept the bad days as just that, and to not get too overly elated about the good days, but enjoy them when they come. I re-read that, and I don't even think that makes sense. It maybe sounds depressing; and I don't mean it like that. But I'm going to leave it; hoping just maybe it might make some sense. And now I'll stop. Like I said before; so many things to share, but not the right words. ... I'll work on that :)...Love to you guys.
Oh Amy and Brad, I am so sorry to hear what Claire is going through. I hate the feeling when we are helpless for our kiddos. But you are wonderful parents and love Claire unconditionally and that's what really matters. There are so many people pulling and praying for Claire and we continue to pray. Hang in there!!
ReplyDeleteAmy & Brad,
ReplyDeleteI am so sorry that you are going through such trying time with beautiful little Claire. I just wanted to let you know you are in my thoughts and prayers constantly. I will continue to pray diligently that this too shall pass,soon. Just hang on to Jesus. Help is on the way. I'm certain. Love & Hope, Ms. J. Nash