It feels like as good a time as any to put it out there. Things are pretty good these days. I still hold my breath every time she bends over or stares into space, but our little warrior defies the inevitable. And it is most likely going to happen again, so we will try not to get too high on life because I fear the fall will be much worse.
So the update aside from all things good is we have been checking on her body to see if it’s as good inside as it looks outside. Today was a new test for us. She had a stimulant test run to check out her body’s natural response because the steroid our body makes (partially adrenaline) is created when we are excited and stimulated the same as when we are sick or hurt. This will tell us if her immune system is back on track after the long-term steroid use.
Personal note: I always think I can be supermom and handle her by myself. I say how on earth can I be so spoiled to always have someone helping me. It’s just one kid! My sister manages 4 by herself many days! I have also met all these strong moms with medically-complex children and they do it seemingly with ease. And yet, after 2 hours of trying to wrangle her, sooth her, and meet her needs, I’m ready for a nap and some wine. And that’s what reminded me that I really don’t care about how all the other supermoms do it.
The highlight of the trip was Reese’s first experience with Rover. Check out how calming this thing is for her. She loved the bubbles and the mirror combined. She was hugging it; she couldn’t seem to find how else to express her happy feelings.
This was just further proof that Cook Children’s is a great place for us and we are so grateful we have them. Plus, we saw a familiar face from the Child Life group who has helped us from the beginning and she hardly recognized Reese. But that “family” feeling of knowing people and having them know us is so comforting. It’s my favorite part as the mom who probably needs that reassurance now and again that we are making progress.
And today, despite the stress of worrying about her and the extra prick because the IV blew (of course it did), and having used the one diaper right BEFORE she decided to have an unexpected poop, oh and the fact that I left the urgent grocery run of milk and diapers IN the car where they sat for the two-hour dr visit, I’d say it feels like we have lots of good days ahead. So that is most definitely the kind of progress we want.
Last night was a new kind of good feeling. Came home energized from good conversation & new faces. Realized what a big deal it is that a staff member nominated ME for our hospital’s main Family Advisory Committee. There is so much good to be done and with a new circle of people with whom I empathize in a way I could have never imagined. This is our world and we are embracing it.
Showing off her medal. Big D wanted her to have it because she deserves it more than he does. #hisidea #sweetboy #epilepsywarrior #brainsurgery
Had to come add to this.
This boy of mine knows what melts my heart. He received this medal for reaching a reading milestone at school. (Many children got it). But he still was very excited!
So a couple days later when we were at home and Reese did something, he said she really was doing great things and he wanted her to get a medal. Before we even left for hospital he was hanging his medal on her door to be hers. Can’t believe that a week later he is still thinking about it and wanted to bring it to her in the hospital.
These are the moments that tell me in his own way he is worrying about her, thinking about her and above all missing her, and us.
It is so hard being the sibling. We are so proud of how he is coping with it all. And to be sure they know how special their love is I have documented it here as proof for those moments down the road when they aren’t getting along. 🙂 Even then, we will be grateful that they can have those moments because it will mean Reese will have come so far.
(Written Wed night, but fell asleep before I could finish)
Don’t ask me how it’s possible. Our little warrior is blowing us away with her strength. Only 24 hrs after brain surgery and she is sitting up.
I know it’s hard to believe, but we aren’t actually hoping for recovery right now. Yes, we want her to be healthy and strong, but what we really want is for her to have seizures so the extra special grid laying on her brain right now will capture the precise location of her epicenter and allow them to remove all of the bad stuff without having to remove too much extra.
We learned today that this concept makes complete sense to Davis. He calls it “the dirt”. I wish I had been recording him as he explained there is dirt in Reese’s brain, and it’s a mess and so they are just cleaning it up. “It’s really dirty in there and they’re cleaning it out, mom.”
Yes, my love, that is EXACTLY what they’re doing. If you need any more help understanding this extremely complex concept, I’m sure Davis will be happy to help. 🙂
Never got this posted yesterday. Luckily we still have today #purpleday.
Reese just had her dressings changed for the first time and they said she did surprisingly well. Better than some teenagers. To me she looks miserable. They don’t know that she isn’t a crier. They don’t realize that all of this stuff touching her head and wrapped on her hands is driving her nuts.
I can’t tell you how hard it is to not yell at people for touching her. It’s like when you have to countdown from 20 to not lose your temper at our kids… But so much worse. I can tell she is scared and she won’t let me touch her and it’s agonizing to feel so helpless.
Her face is starting to swell so you don’t want pictures now. I want everyone to have this beautiful face in their minds, and not be saddened by what we are seeing.
Thank you to all who are wearing purple! You’re wonderful! And when someone comments on that beautiful shirt please tell them it’s for epilepsy awareness.
Lots of info on the different potential diagnosis we are working toward. But right now she doesn’t cleanly meet the symptoms of any. So they are all theories right now, that’s all. And now what you know, is what we know. And that isn’t much.
Option B: Rare form of epilepsy – Lennox-Gastaut or Dravet syndrome. Our astute epileptologist pointed out having a name doesn’t really make you feel better if it doesn’t help you solve the problem. But I think for now it’s a start for us.
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.
The purpose of the EMU is monitoring seizures around the clock with both video and EEG.
It is a little hard to do when you also are sent to ICU. But thanks to these nifty wifi remote networked cameras on wheels from Sony, Reese still has full EMU coverage two floors down. I even watched the marketing video — IP plus Italian word for beautiful Bella = ipela.
I of course let myself imagine what this experience would be like when everything is wireless and we don’t have 10 lines crossing every time she sits up or rolls over.