Before I go into the events of today and yesterday’s EEG information I just want to mention and share that Austyn Jayne came to visit today!My dad brought her and Kyrie up to see us and I was so happy to see that adorable little face! I think she was a little nervous at first and when I first picked her up she’s it teary eyes and almost began to cry, but quickly composed herself and gave me a big hug and asked me to do a puzzle with her. How hard all of this must be for her, she is just as strong as her baby sister! I’m blessed with two amazing daughters. We played outside and went to the play room, painted, played doctor, play doe and had a fun time while daddy and papa stayed wit Colbey Raye. Austyn Jayne also got to spend some time on the floor with Colbey Raye! It was so nice to see her, and hard to let her leave, but she was definitely tired and ready to fall asleep on the ride home :). Thanks dad for bringing her! It meant so much to me!
Yesterday afternoon around 2:30pm Colbey Raye was moved to a special unit where they hook little ones up to a prolonged EEG and monitor them from a camera inside the room. Because these EEGs go on for a prolonged period of time the leads are placed on the head with a stocking cap that covers them to keep those little grabby fingers from pulling them off constantly! And the leads are plugged into a little pack, that can be carried around to better help the kids move more freely, instead of straight into the computer. It still is a little tricky with Colbey Raye because she has a unique way of crawling and is constantly tugging and dragging the pack around causing her leads to pop off occasionally. The nurse and I rigged the pack a little so it’s now strapped to Colbey Raye more like a backpack! She’s managing to crawl better even though it’s a little heavy for her.
From 5am until 11am yesterday Colbey had 5 seizures, I was uncomfortable with with frequency but at the same time was hopeful they would continue so that once hooked up to the EEG she would have a few and the EEG would be cut short! While Colbey Raye was being set up on the EEG yesterday she had one seizure, only being halfway plugged in the reading of that first seizure probably was not very good, about 2 hours after she was all set up and ready she had another seizure and then about 5 hours after that had another. Even though i do not really want her having seizures I was happy that 2 had been caught on the EEG! We had hoped that by catching these two her doctors would be satisfied and in the morning she could have the leads taken of, no such luck. This morning when Dr. Owens, the epilepsy specialist, made his visit he said that they wanted to be able to capture a few more so she was going to continue on for another day. As the day went on and no seizures came I was nervous they wouldn’t be unhooking her come tomorrow morning! The poor girl is getting a little cooped up and uncomfortable having so many wires to maneuver around. When Dr. Owens came back this afternoon I was not expecting to hear the information he had to share. I was glad josh was here and was able to finally meet him. Dr. Owens began telling us that they had caught quite a few seizures and that in the morning Colbey Raye could be taken of the EEG, a relief yes! But also I was a little confused, so I inquired about the seizures and how many was “quite a few,” when he replied “seven” I was shocked. How could she have possible had Seven?! I’d only seen two and I watch her like a hawk, I don’t leave her room for a minute unless a nurse or josh is with her. He explained that some happened during the night, and that some were so short that it would barely cause the stiffening of her right arm and a few blinks, and some a stair or blank look on her face, so they could be easily missed. He has only reviewed the portion from when they first started recording at 2:30pm yesterday until 9am this morning when the computers were reset for the day. I am very anxious to see what today and tonights EEG shows, as I have not witnessed any seizures so far today at all. This has always been my biggest fear, I make sure to watch so closely, and to keep her close by but still I am missing these small seizures. Now with this information I know that Colbey Raye does have seizures during the night, this has always been a worry and a question of mine as well, but this is the first time she has ever been hooked up to an EEG over night, so I never had proof until now. I cannot help but wonder how often is she really having seizures? These little staring episodes at home, are those really seizures? It is a hard thing for me to grasp to grasp, and I am having a hard time accepting the fact that I don’t catch them all and that quite frankly it is probably impossible for me to truly catch every little seizure my sweet little girl experiences. I just want to hold her and kiss her and love her through every seizure and let her know mommy is so close and always there to help her. I can’t help but feel for her in these moments where she is experiencing such a hard and scary thing, what does she feel? How much does she remember or know or understand? How confusing it must be for her to wake up to a seizure, not knowing what happened and not having anyone next to her to love on in that moment of confusion? I love you sweet angel of mine and mommy is always here for you! You are my perfect girl, and an amazing example of courage and strength. I love you with all my heart>