For all of Claire's progress, there is one milestone I am desperately awaiting: Claire's smile. A few weeks after we left the NICU (when she was around 6 weeks old), we caught glimpses of a gassy grin, but since that time, we still haven't seen her develop a social smile.
I yearn for a smile; it's the one thing that will tell me that Claire is content. At the same time, I realize that Claire is going to be delayed in her milestones, so I shouldn't really push her too hard. After all, she has already overcome a lot in her short life, and I have to continue to celebrate her achievements rather than mourn her delays.
On top of everything, Claire has been quite sedated since last Wednesday, when her seizure meds were changed. I hate seeing my little girl so sleepy. It makes my mind spin, and I start to wonder what effect Claire's seizures and her medications will have on her in the long run. I'm still praying for the best, but her latest round of seizures seem like such a set-back, and every little set-back breaks my heart just a little bit more as I feel my dreams for Claire slipping away. I find myself googling incessantly, looking for answers anywhere I can find them.
Tomorrow we have an appointment with Claire's neurologist. I have a laundry list of questions I plan to ask him, and I pray that I leave with a better understanding of Claire's condition and her prognosis. I have a feeling I won't though. Everyone has been so vague with us on Claire's prognosis. Most have told us "it's too early to tell." While this might be true, it hardly satisfies someone as impatient as I am. It also makes me wonder . . . every journal article I've read says that early-onset seizures generally carry with them a "poor prognosis," but I can't find a single journal article that tells me what a "poor prognosis" really is. It sounds scary, but like the term "severe disability," I'm hoping I'll see that it's not really that bad. Please pray that our appointment tomorrow goes well and that we get the answers we need.
I have always found the hardest part to deal with was the uncertainties. The mind doesn't know what to anchor to...plan for or formulate realistic dreams, what is that anyways when there's more questions than answers? It's a hard place, I understand. I know the eyes of your heart are trusting in faith God is watching over Claire. And He is. We are praying for you.
ReplyDeleteI, too struggle with impatience! When the dr.'s say it is too early to know what Claire's prognosis will be, they are absolutely right. We were constantly hearing "we won't know until he's 2". That is a looooong time to wait, especially when your child is delayed! There was a long time we didn't really know what Miles' prognosis would be. He didn't really track with his eyes until he was about 4 mos. old. Finally, when he was around 9 mos. old, we started to get a glimpse of how he would be. I still remember his first smile and then his first laugh. Surreal.
ReplyDeleteGive Claire some time :) She's still pretty new! Believe in your little girl and trust your instincts (they are stronger than you know). If you feel her medication isn't right--speak up!
You are never far from my thoughts and prayers. Praying for a good report with lots of answers!