I am 100% positive miss Reesey Piecey just signed to me she is all done with her dinner.
THIS IS HUGE!
I think we have kind of been glad we were able to count Reese’s experience in months. We’ve read about so many stories and met other families whose unknowns lasted for years. So, we don’t revel in this anniversary like you normally would.
It’s been a year today we discovered Reese’s epilepsy and I will always be grateful we have such a strong relationship with Miss Beth (our long-time care giver for Davis and a dear friend) who was with her and handled the situation so perfectly. I cannot imagine how she felt in that moment. Even though I’ll never forget that first night in the hospital, when Bryan left to get stuff from the house, and I witnessed my first seizure alone, amidst the swirling of nurses and beeping monitors.
And here we are facing the frustration that we don’t know anything. Ok so that’s not all true. We know it’s not genetic, or metabolic, and we know now it’s not autoimmune (at least the one kind we tested for), and we know it’s not caused by meningitis or anything bacterial. Great. So what is it? We spent a few months just accepting that some people live with epilepsy and there is no root cause, but the doctors don’t seem to think that fits Reese’s condition. She has all these contrasting things that don’t fit nicely into a category they want her to be in. So we keep searching for an answer. And who knows, the doctor in Chicago may see something new, no one else has considered. This is our focus now, and we will use it to have something positive to think about for a few weeks, at least.
The reality is though, our poor baby is facing a difficult situation no matter which way you look at it now. And we have to wait six months basically to even begin to take on the next challenge. We face a battery of tests again, looking to see what might have developed in the folds of her brain that wasn’t visible in such a tiny brain before. And then, we’ll wait for more results and we will wonder if it’s something we can treat or not. But we have to wait.
And so we are in a holding pattern – which there are times when you get into one of those patterns in the sky and you worry about diverting to another airport because you’re running out of fuel. That thought has crossed my mind for us. We are coasting, and at what point will we have to stop.
We are grateful we have a bit of a reprieve that we can prolong the inevitable. But that’s all it is, prolonging it. I am accepting that she will seize again. Probably not for the next nearly six months that she stays on the steroid. And there is still a chance the steroid will work — magically fixing her seizures completely. But, it’s harder to believe this is the case when nothing else doctors have forecasted has come true, yet.
So we will no doubt have many more milestones to share the rest of this year. And we are going to celebrate and cherish every second of it, because next year will I am certain brings on a new roller coaster we cannot even imagine right now.
Look who is helping herself tonight. Night and day even from yesterday’s eating. So exciting to have her feed herself and clearly be proud of it.
Loves performing. Loves freestyling. Come to think of it this kid’s whole life is free style.
Best part is he doesn’t seem to realize he no longer needs to make the guitar sounds with his mouth for accompaniment now that he actually has a guitar. Classic.
Happy birthday to my little guy. Zero to five has been a wonderful and crazy ride!
Davis: Mommy, do you work really far?
Mommy: You mean far away? No, I am pretty close to the house and to school.
Davis: Then why can’t you come stay at school with me?
Mommy: Oh hunny, I have to be at work. I have people to talk with and I have lots to do. It’s like your teachers — they stay at school all day with you don’t they?
Davis: Yeah, they can’t leave us because they have to protect us and make sure we don’t get in trouble.
Mommy: Yes, exactly, I have to do the same at the office. (I was thinking the staying there part)
Davis: So they don’t get in trouble or lost?
Mommy: Exactly. (Hey, on any given day it’s highly possible this is true.)
(And let it be known my little manipulator expects a half day visit, but this Mommy will be there for the appropriate lunch-time party.)
It’s been rough to go back to the silent, locked up Reese after so many weeks of our bubbly girl.
Today we didn’t give her the morning dose of the newer seizure med, Benzal, and while she was still groggy this morning she perked up tonight. We got two half smiles for different simple gestures and she was trying so hard to study our faces.
I say perked up because she showed interest in something other than her steroid-induced food obsession. Enamored with D, she played with his hair at bedtime and that made his night.
I am observing him closely because the past week he has shown more signs of feeling perhaps jealous or confused. And it hit me that on top of the usual emotions of competing with Reese for attention, he is about to have a huge change with school. Maybe without knowing what the change really means he senses the uncertainty. That, plus, I really believe he has been more upset or emotionally lacking because he misses Reese paying attention to him, even more than wanting it from us. His need for her to laugh at him may be more affected by her foggy spells than I realized. We all were spoiled after several weeks of basking in her precious happiness.
So here’s hoping tomorrow is even better and that dropping the dose is the right move so we can get our bubbly baby back.
It’s never been easy for me, that highly coveted virtue — Patience. And it’s particularly hard these days when we feel like we have so much hinging on Reese’s prognosis. A mercurial conversation pending new test results, doctor consultations and her daily progress report. It has been flabbergastingly complex how the inter-workings of her system, the meds, the therapy, the tests, all are co-dependent and yet, we need something to stand out to allow the other pieces to fall into place. Preferably into a logical place, and not just a thousand pieces crashing to the floor. And I think that’s what I fear the most. Bryan and I are planners. We like to dream and we like to build what if scenarios and then build dependencies and plans, to a fault. So right now we are facing literally more scenarios than we can mentally handle and every day it feels like a different one is taking the lead.
Why the ramblings? We spent over an hour with our smart, energetic (and most importantly) tenacious epileptologist — a neurologist who only deals with epilepsy. (I love btw that Word doesn’t know how to spell it either). And so here’s the update in the most logical way I can find to explain what our next set of scenarios is.
Her multiple weeks on steroids being wired like a junky and equally agitated weren’t for naught. Her brain activity shows a positive response that means her repeat (out of control) seizures would be less likely. And her development definitely took a leap forward. So while we had a normal EEG report as of April 10, we were afraid to share the news, not really understanding the full impact. We HAD an appointment for this coming Wed. with our epileptologist again, but we don’t need it now.
Reese is back on steroids. For joy. Doctors think her positive response to the previous steroids means she just didn’t get enough for her brain to fully heal. Seriously. This is the thinking. Sooo, we get to try another high dose, get an EEG again in two weeks (can we get a frequent visitor card?), and then depending on how much better her brain activity looks will determine how much longer she will be on steroids.
At the same time we continue to wait for several tests to come back that they ran while we were in the hospital. The potential scenarios are autoimmune, some rare genetic mutations that haven’t been fully mapped yet, or a metabolic option having to do with breaking down creatine in the brain.
No matter what, the outcome is Reese has something rare. And two of three seem to be fairly treatable.
I can’t even recap the whole day but I can tell you about the last 3 hours with a delirious smile, because all we can do at this point is laugh.
Bryan’s brother was super kind and satisfied our need to eat something healthy with a big salad and some fruit. But, we got interrupted at least 3 times. First, we were trying to time Reese’s feeding with the nurse’s schedule to give meds, and that meant we had to also get her IV cleaned up so that requires at least an hour of pre-planning because you have to find a tech or an ER person who can handle her tiny veins. But even when that was cleared up there was still no high chair to be found anywhere. Not sure how that is possible in a children’s hospital. So we fed poor Reese in an execsaucer that she was really too tall for. Here she is surrounded by pretty colored toys for the first time in 3 days and we expect her to ignore them to eat! And as if that wasn’t enough, half way through her scarfing down 4 oz of baby food, we smelled either sulfur from a lit match or could have been like plastic melting, I was ready to detach her from all the devices and carry her and saucer out the door. But they decided it was in the ventilation system. Disaster avoided.
Reese didn’t nap at all today. The new anti-convulsant is kicking in. So when they were dilly dallying about all these things to get done I warned them once she is asleep I am not letting you near here. So of course, in all the earlier commotion nurse forgot to take Reese’s blood pressure. She came in and basically I think I could see her change her mind. Said she HAD to do it in about 3 hrs. I nodded politely.
And last, but not least, the video tech couldnt see R in the crib. Hello!??! We have been in this room for 8 hours and he waits until she is finally asleep to have us move her damn crib around so it is in a better position for the ceiling video camera. Of course the 1950s-style asylum crib wheels squeak and we bump just about everything else in the tiny room trying to adjust the crib about 30 degrees. Seriously.
Comedy of errors I tell ya.