For a while, part of our morning routine has been to deal with Brianna's seizures. I would take her out of the crib, lay her on the changing table, and she would have a seizure.
They used to be infrequent, but in the last few months (since returning from the mainland) they have been increasing in frequency, to the point that she was having them every morning, and sometimes multiple times a day. We tried changing up what we did in the morning, but she'd just have the seizure somewhere else.
The first seizure I noticed was a year ago, while at my sister's house. I told the neurologist about it, and they scheduled us for an EEG. The EEG was a big fat failure. I don't know how they expect these things to work. We came in at the middle of the day, theoretically when she'd be ready for a nap. I was supposed to get her to sleep, lay her down, and then they'd hook her up to the electrodes on her head. Well, I nursed her to sleep and layed her down on the very uncomfortable bed in the sterile room that had no personality to it at all. Sure enough, as soon as he started hooking her up, she woke up. Nothing would get her back to sleep. I have no idea how they ever do a successful EEG with a younger child or baby. So then they did an EEG while she was sedated. And all that told us was that she didn't have a seizure while sedated. For the next year, I'd bring up the seizures at the appointments. I was either told the EEGs didn't show anything, or just kind of brushed off. The "episodes" were very infrequent at that point, so I didn't press it (stupid me). After we returned and they came up more frequently, I brought it up again, but the neurologist just said he didn't think they were seizures. Finally, I was able to get some on video. Thank goodness...as soon as he saw the video, he affirmed that it was a partial complex seizure. We talked about different medications and settled on Kepplar. Only one year wasted...
She was still having seizures, though not as frequent, for the last two weeks (she's been on the medication for two weeks), so yesterday the neurologist had me increase the dosage. She didn't have a seizure this morning, so we'll see how well it works.
Yet another example of the frustration I have about getting the point across about what she needs.
You'd think that these doctors would learn that I've NEVER been wrong when something's going on with her. I'm so frustrated and so sick of being brushed off. It takes so long to get anything done. Referrals end up taking at least a month until we get to an appointment, usually like two or three.
I'm hoping if the seizures go away, especially if she's having them while sleeping, she'll find more energy during the day. Despite sleeping for 10 hours at night and typically taking 1-2 hour nap she still seems very tired all day long, with brief spurts of energy. Here's hoping.
My Dear Phaedra,
ReplyDeleteAs I read your post and watch the videos, first I cry, then I cry out " ‘why’ to such a sweet,, beautiful little girl...and her family", then I want to hold you tightly, like I'm sure you do with Brianna, very regularly, hoping that that will make it all "OK" "get better", and "all go away".
Then I am reminded of all the times our God has sustained and provided for us as we deal with the day-to-day changes and challenges of Jan's MS...and your posts ooze with the love, and care and strength that reinforce to me that He has anointed you and Brant in a special way (yes, I know..."a blessing I did not ask for", right :o) )
The path God has chosen for you to walk to display his glory is not the one any of us would willing choose, but then we always want the easy way, don't we. But He calls us to persevere in HIS strength and wisdom and love...and grace toward folks like your Doctors :) .
YOU are Brianna's voice and advocate. and yes, it will always be frustrating to interact with Dr's, even the so-called "experts", as with as much passion as they have for their chosen field, and education and experience they have from their day-to-day interaction...YOU know your daughter- that's a bond and gift God has given you. Keep going back to God- minute-by-minute, if necessary for the strength to persevere in advocating for your precious daughter. Part of that strength will be to control the urge to throttle the Dr's when they just "don't seem to get it". Part of that strength will be to never tire as you care and advocate for her...and her two brothers.
Unfortunately, we are not born with all the knowledge we want/need to fix these things early on, it is a fact that "experience is the best teacher" as unfair and unloving and harsh as that sounds. Look at how much more informed, aware, sensitive, compassionate, determined you are since you have had to learn "the hard way". And while it is natural to think it is unfortunate that we have to endure them while we/our children, etc suffer needlessly, I see nowhere in Scripture that God ever says He will remove us from these things, but rather that He will strengthen us to persevere through them...a seemingly small comfort, but truth and comfort all the same.
All that to remind and encourage you to never tire of going to God and absolutely lean on Him for wisdom and strength to: advocate for Brianna; be controlled, compassionate and gracious as you deal with Dr’s/nurses/staff/TriCare, etc who do not know Brianna like you do; convey to all your children that you love them equally even though it looks like Brianna gets more of you; pray for and lean on your husband for the strength only he can give you; and to live life in such a way that you reflect the love of Christ in all you think, say and do.
Phaedra, your example encourages and inspires me! I am honored to call you friend and sister and to walk with you…from this distance, obviously in spirit than physically next to you, in this triple marathon journey. Pace yourself. To Him be the glory.
Tom