Sitting here, holding a baby monitor, staring at my sleeping Colbey Raye. I should be working on the million loads of laundry I haven’t done all week, but instead I’m just here, sitting, watching, listening and thinking about what might happen if I let this screen out of my sight.
Monday’s seizures have brought a lot more questions into my head. She has now had a total of 5 post hemispherectomy seizures. Up until Monday I have been able to “blame” these past seizure on other possible causes. Seizure number one, 5 days post hemi, justified by the fact that it was only 5 days after a major brain surgery! Her brain was healing and it is not uncommon for seizures to follow such an invasive brain surgery. Seizure number 2, came in October 2015, 1 year and 5 months post Hemi! This seizure happened while Colbey Raye was battling a bladder infection and her temperature reached 104! Ruled to be most likely fever induced and we wrote it off as a febril seizure. Seizure number three came in May 2016, we were in the middle of a major medication wean, the seizure was very brief, short compared to most of her “typical” and although she napped for a while after, she bounced back to her baseline fairly fast! Medications can be tricky, so a small seizure while her body normalizes less medication can be justifiable right? So that’s what we did, justified them in all ways possible to help keep ourselves sane in the moment.
Monday, October 17 2016, Started out as a pretty typical day! I did have to wake Colbey Raye up (which is not normal) so she could eat breakfast before heading off to Preschool. But she ate her breakfast got dressed and headed out the door to catch the bus, her ABSOLUTE most favorite part about going to school 😊. Nana came, I headed off to my midwife appointment, Auntie Nini got Colbey Raye off the bus, nana fed her lunch and put her down for a nap so she could get some rest before therapy later! When I got home Sue (nana) said Colbey Raye seemed pale and didn’t eat much lunch and was very tired. After a busy morning at school Colbey Raye is usually very tired and ready for a nap, so I didn’t think to much about it. Later as I got her up from nap she felt warm, and was shaky so I took her temperature, she was running a low grade temp of 99.8. I canceled therapy and decided to let her have some movie time on the couch. I went to the bathroom and as I sat I heard it. An all to familiar sound. A sound no one else (unless you’ve experienced this a million times) would bat an eye at. I paused, but I knew what was taking place and I ran as fast as I could from the bathroom to her side. She was looking for me, trying so hard to call my name but she was lost in a world she doesn’t remember. A world I know to well. After it all ended she slept, we snuggled and the rest of the afternoon was filled with, rest, tv and naps. She still had a low fever that was now at 100.4, still not high enough to cause a concern! We had a late dinner and as daddy sat to snuggle his sleepy girl seizure number two came. Again she was scared! Began to look for someone to help, tried to call for me and after a few second was again lost in a world she doesn’t deserve to be in. Once it was over again she slept. On and off and slept the rest of the night in our bed! Josh and I didn’t sleep much, but Colbey got the rest she needed. She has slept a lot since, trying to recover, I have slept very little.
In the moment I’m calm, collected and can follow the steps to help keep her safe during these seizures I know to start keeping time and to take mental notes of how her body responds to the seizure. I think it is a lot harder for Josh to witness, being calm in the moment is harder. But it is a lot harder for me to mentally handle after the seizures are over and I have a little time to process what just happened. I can take the moment strong, head on and can calmly explain the entire sinario to the doctors. Remembering every detail. But once it is all over, It takes a greater long term toll on me and after a few days I realize how much it impacts my daily function.
Colbey Raye is on the mend! Other than her low grade fever she didn’t have signs or symptoms of an illness? We cannot rule these seizures to be caused by a virus or even the fever. For now her Neurology team has decided to increased her medication dose and they believe these seizures are “breakthrough seizure” caused by Colbey Rayes growth and there for out growing the dose of medication she was currently on. She is still extra sleepy, either from the effects of the seizure of the increase in meds. She is a lot less stable on her feet, dragging her right leg more as she walks and is more inclined to grunt, whine and groan than use her words the last few days. It is hard to be three! It is even harder to be a three year old with seizures.
As I helped Colbey Raye onto the bus yesterday (she skipped school Tuesday and Thursday), panic took over and I almost ripped her right back off those steps and kept her home! What if she seizes at school? Or worse, on the bus on the way to school?! And no one sees it? Who’s going to be her calming voice in a moment of sheer terror? If you have ever witnessed a seizure you know how completely terrifying it is, for the onlookers as well as the one experiencing it. All you want to do is take that fear away, the pain away and help that sweet little terrified being feel safe and protected. I need to be able to see her all the time, I’m thankful this next week she is off! And I will be able to keep her close and make sure the seizures are not going to happen again, for the time being…
Beauden witnessed a seizure for the first time. He is probably to little to remember the moment, but I won’t forget the way he layed down next to her on the floor as she seized and touched her head asking if she was okay. “Beau k? Beau k?” (He calls Colbey Raye Beau 😍) and then began to say it’s okay, repeating me I think. He checked on her and asked her if she was okay for 2 days after it all happened. Now he’s back to pushing her buttons and arguing with her as siblings do! Austyn Jayne has seen many of these, but her memory of them is faint. She remembers most that we were gone a lot and know why but the events are fuzzy. So witnessing these seizures brought back memories and worry for her. When I’ve left the house this week with Colbey Raye she has told people we are at the hospital, reverting back to what she remembers always happening after seizures! Right after her second seizure on Monday Austyn Jayne calmly asked “is Colbey Raye going to die?” How scary must it be for a 5 year old to watch her little sister go through something so hard. She has been acting up a lot more since and I think she has a hard time understanding it all. She doesn’t know how to respond and has been asking question like “when will the seizure come back? Why did she have a seizure? I thought she had surgery to make it go away?” I’ve asked myself all of these same questions.
Inspite of all that has happened this week, and this set back for Colbey, I have to end with a brighter note! Colbey Raye has been making huge leaps! She amazes us every day, her social friendly attitude wins over every heart. No one can walk past Colbey Raye and not share in her contagious smile! She is counting to 10, knows most of her colors, loves to sing the ABCs (it’s the most adorable thing to listen to by the way) and she talks non stop about the school bus! She now wants to hold my hand and step up each step, where as not to long ago she cried every time I tried to make her walk up steps. She talks so much now we have amazing conversations and she loves to tell knock knock jokes. She is funny and she knows it, she is to smart for her own good and knows how to work the system in her favor 😋. God has really blessed this little girl with a happy soul, and I’m so glad He did. She’s the light at the end of my tunnel, a reminder to be great full even in hard time, and she gives me the courage I need to have when I cannot seem to find an answer. 
Colbey Raye's journey and life's new "normal" 