I think worrying is one of the most draining things there is. I am normally not one to worry, or obsess over things, I’m the parent that let’s my kids figure it out them selves. I let Austyn Jayne ride her bike without a helmet, I let her sit forward facing in the car seat the day she turned one. I hand her back a dropped bink without wiping it off, sometimes she will eat off the floor. I could go on but I won’t mention the other crazy things I let my 2 year old do! I admit I’m a little care free in a lot of areas, I am thankful for that! And I know a few people have told me I should worry more, but it’s just not me. Now, having a child with an epileptic disorder, my worry is constant. No, I still don’t worry about Austyn Jayne standing on the arm of the couch, or riding without her helmet, my worry is different. I worry about sleeping through one of Colbey Raye’s seizures, about spending to long in the shower or bathroom and not having eyes on Colbey Raye, driving in the dark and not being able to see her in the back seat. I worry about how long I should wait before calling 911 or giving a rescue med, how Josh and Austyn Jayne will handle Me being in the hospital with Colbey for days at a time. What affects all of this will have on Austyn Jayne and how she will respond to her sisters illness the bigger she gets. lately I feel like I am constantly sitting on the edge of my seat waiting for an unwelcome event to strike. My minds constantly going, I’m always looking over my shoulder at Colbey Raye. It’s nearly impossible for me to carry on a conversation without looking in Colbey’s direction at least 100 times even if someone else is with her. My muscles are tense, my body is tired, my mind is running.
Thursday was a very good day for Colbey, she only had 1 seizure and she cut her first tooth! She was able to get a few good naps in, and we decided to take advantage and go out to dinner! We had a fun night and Austyn Jayne really enjoyed the family time.
Friday was a bit of a different story, it was a hard day for Colbey. She’s had a day full of seizures and a hard time napping even though she was exhausted. Even on a bad day she is still full of smiles. I love her happy disposition. That smile helps me smile, and she brings so much joy to our life.
Today has been another hard day so far, she’s been seizing every time she tries to fall asleep but thankfully has not been having seizures during her awake/play time yet today.
Yesterday we scheduled an MRI and a PET scan, they will take place on Dec. 10th. We also have a clinic appointment with Dr. Ko and a Neuro Psych evaluation Coming up on the 3rd. Looking forward to these appointments and hoping they will be helpful in prepping for what is to come. Thank you all again for your prayers, we are blessed by them daily.


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