Hospital Time Day 1: Mama Bear Awakens

We can’t thank everyone enough for all the thoughts and how many of you have reached out and offered to help. You are amazing. But I have to tell you, nothing is more amazing than how brave and strong our baby girl is.

So let’s start from the beginning….

Reese had four seizures Sunday, and another four Monday. We have gotten used to some spells in a row, and at first we weren’t concerned. But two things changed this time… 1. she couldn’t stay stable and awake long enough to eat or drink anything. 2. We gave her the rescue med and it didn’t help as it should have.

So we agreed if the next seizure was within 12 hours of her last, we were heading to the hospital.

Tuesday morning she was only awake about 5 minutes when she seized and it didn’t take any more thinking for me — we started packing to head downtown. After insisting to our neuro’s nurse that we were coming no matter what, she agreed we would get our EEG when we arrived. “They would squeeze us in.”

The goal of the EEG is to capture a seizure both on video and with the computer that is tracking the brain’s activity. So it’s not great when you have a seizure 5 minutes before you get to the EEG, kind of defeats the point. We were crushed. Luckily we got the veteran technician who managed to let us stay past our 30 minute block, and after 1.5 hours we got what we had come for.

The picture was so clear to the nuero doctor that we had a different type of seizure happening than he had thought that it meant he was ready to try a different approach. That, plus Reese not eating, influenced him to admit us to the hospital right then.

So, we spent Tuesday night just getting checked in, hooked up, and trying to stabilize her seizures and her fluids.Good news/bad news — she had a seizure right in front of the nuero dr, while hooked up to the monitors, Yay! More data.

Total for Tuesday? Five. Two out of five recorded was making it a pretty good day, if you can try to find the positive side.

I know lots of our friends look for updates on Reese. I just hate to fill my timeline with our daily challenges. So consider this a recap of the past 2 weeks or so.

This video shows you happy Reese; pretty much 100% herself. Other than the constant teething, we got a top tooth in, total is now 3. And, she has acquired this new smirky smile that of course, is adorable. We haven’t seen this much of late, though.

We made the trek through the airports for Thanksgiving at my sisters outside Atlanta. The cousins played so well together. So despite some of our health issues, it was a great trip.

I wish my family could have seen more of this smiley face, but I know it’s a Thanksgiving they will never forget. Everyone experienced several seizures that week and as sad as it was, I know they felt relieved they could finally see one in person and now be able to handle it in the future.

So after 3 the Saturday we traveled and another 4 on Monday, we tried to make her comfortable and get as much sleep as she could. And that is all we ever can do.

By Friday, when we got back home she was feeling better. Then it started over again this last Sunday night. She had 5 in 24 hours and it never seems to get easier to hold her until she wakes up to see how bad she will feel.

We have good news though. The gene test we have been waiting for since Sept came back all normal. No genetic disorders or predisposition to seizures. That may seem unsatisfying, but it is a relief for us. This means she may be in the group who just grows out of it with as little explanation as we started with.

I won’t lie, this is rough. We are always looking for signs that one is coming, and we read into patterns that aren’t really there, but we are ok. Davis is the most empathetic, protective, loving big brother and it is always touching to see how he runs to her aid.

We hurt, we cry, but this video is what we live for. Five days after her last and she is the happy girl, when she feels well enough to coo and laugh and squeal with delight.

So that is where we stand. Thanks as always to EVERYONE who calls, listens, prays and thinks about our Reese.