So excited to be on this trip. To get to be out of our house. To let Davis run wild and allow Reese to explore new things. To be spoiled by my parents who are thrilled at sharing all they love with us. To do it up on the Fourth like we did when we were kids. To just be normal.
Plus, I know I am trying not to take it all for granted that only 35 days ago we had the scariest day of our lives. You ask how she is and of course the answer is great. Anything is better than the worst nightmares we’ve had. I have been so optimistic because it’s really the only option in my book. I wouldn’t know how else to live.
And then it’s like you have a few good weeks and you forget the fear. It’s nice to forget but it always hurts more because you feel like an idiot for letting down your guard. You tell yourself “you knew better!” And you sigh. And maybe you cry.
I’m holding on to a sliver of that former full moon of optimism right now, while I hold my sweet exhausted girl.
It’s easier to say it here than to your faces, all your amazing, beautiful faces who love us so. She had a seizure after we got unpacked at my folks and we totally didn’t see it coming. Yes she has an ear infection. But she had been on antibiotics for 48 hrs and normally it’s the first symptom. So we waited and when she seemed to be stable we figured we got past it. I was really thinking this was the sign we needed that surgery may have been the cure. An ear infection with no seizure would have been proof. We still need to give it time. It has to be the answer.
She slept and she went the next 2 days all normal. The pictures are proof of her good mood and feeling so well. But this morning we’ve had another hit and I don’t think we can ignore it now.
So we are going to keep hoping it’s all part of a treatable ear infection. Seems her antibiotics aren’t doing the trick. So we’ve upped the ante and I am adding oils to the treatment because I have to believe it can only help at this point.
Needless to say, we won’t have that easy-going feeling for a while. We are back on guard. And just when I thought good change was coming, we may have to put that on hold if we are back to where we started. No telling just yet. As always your support helps us through every day.
She will let us know when she is better. Right now we are just focused on getting to Monday when we can see the doctors.
I believe in all the research that music helps with healing and learning and I have always believed in my heart she loves music as much as I do. Sometimes I twirl around the room holding her or boogie down and she giggles. But I had no idea she actually connected dancing with music before today. Who knows, but it sure seems like a new connection has been made because this is definitely something new!
Someone is really spoiled. Since we got home from brain surgery, she’s been sleeping in our bed parts of every night for obvious reasons. Now she seems to have decided she should start out here and save us all the time of getting up.
And the guilt kicks in. I’ve held her down and let them do terrible things to her. Of course she can sleep wherever she wants! Can’t deny her snuggles with mom and dad, now can I?!!!!
Overall though, it’s been a great couple weeks. Staples came out last Tuesday and it took me two full days to work up courage to wash her hair. Even after getting used to touching staples, her raw, open skin again made me squeamish. We both cried a little but we survived.
Doctors decided to get some blood work done to see how she looks between surgeries. Poor lab tech hadn’t even heard of two of the tests they wanted. So after 6 vials (24ml of blood drawn) and double checking on the Internet, she still managed to miss one. We head back in the morning to make R suffer again. Sigh.
Therapists are all pleased with her post-op progress and everyone who knows what they’re talking about says her scar is healing. So we are just going with the flow right now.
Let the healing begin, sort of.
Dissolving stitches almost gone. Staples come out Tuesday. I know it’s probably been hard to piece together where things are with us so here is the abridged version.
First surgery was for the EEG implant and we got the data we needed. Second and third surgeries were emergencies to stop unexpected brain bleeds and “evacuate” the building blood clots. Second clot caused some scarring that means it is damaged tissue now. But doctors don’t care because it’s in the section they plan to remove. All this means is she would have lost the function of part of her brain anyway.
Which leads us to the fourth and final (knock on wood) craniotomy. A left temporal lobotomy. May 27 we are scheduled to have the whole lobe removed to be sure there is no chance for remaining tissue to cause seizures. This is a good thing. Reese is very young and her amazing brain will remap almost everything that would have been in the left temporal lobe. It may just take awhile.
It of course doesn’t come without concerns and risks of its own. Clearly she has a bleeding problem. Maybe it’s caused by long-term steroid use (don’t do ‘roids kids or prof athletes). Maybe it’s a condition she just had naturally. Either way, we are now prepared with vitamins and blood plasma for the surgery. Second concern is seizures — before and after. First we have to make it to May 27 without a seizure. Is it terrible if she has one? No.
But does she ever have just one? So we are doing what we can with other meds for the next four weeks. After surgery, many brains have seizures as they heal. We could see some false alarms
at first and have to wait out a good three months before we can see how it’s going, still taking our seizure meds. And finally, somewhere after a year we would start weaning off all meds to see if she is really in the clear.
It all means this beautiful head, with it’s slowly healing scar, will be cut again, (same place), and then first of June we will come home and start the healing process for real.
Thanks for all your patience, support, words of encouragement and high fives for Reese. She truly is a warrior and we are so proud of her, and her brave big brother.
There is no amount of space big enough to hold our fears right now. They just took Reese back for emergency surgery to remove the blood pooling outside her brain again. They feel she may have a bigger issue that needs to be looked at so tomorrow’s epilepsy surgery is postponed.
This is not a good thing for Reese because the timing of all this was orchestrated perfectly to avoid unnecessary seizures.
We are trying to hold on to our trust in the doctors and in our hearts where we know she is such a fighter she is going to beat all this.
She is most definitely on a VIP track around here. Our doctors have a plan and we are doing all we can to challenge them, question them, and look out for her needs to make sure nothing is missed.
They will stop the bleeding, take out the grids and close her up to allow her brain to rest and heal. There is no way of knowing if anything has happened to her brain right now. The seizure activity has been very active, they believe that is due in part to the extra blood and the pressure. She just needs to rest and the time will allow her brain to get settled. Having the grids in always had a risk of upsetting the brain, there was just no way of knowing how much. At least she won’t have to deal with the cords coming out of her skull anymore. That is done, forever.
We have been so prepared and strong through this whole thing but this was not a scenario we could bring ourselves to prepare for I guess. It’s heart breaking. We are with our parents and we will let you know when there is more to share.
I suspect 3-4 hours for this operation and then we will be back in ICU.
Please be patient if you don’t hear from us. This place is a black hole, time is lost and you get lost in the absence of the world. It’s been so unreal, this whole ordeal is really unfathomable. Even in the moment, I stand here wondering if it’s really happening.
We love our Reesey.