I want to start this post off by being thankful for the past few weeks. Today marks Colbey Raye’s 20th day in a row without a noticeable seizure! This is one of the longest stretches she’s experienced since she was diagnosed with FCD back in June 2013. In the last month she has recovered extremely well from her craniotomy and is quickly learning new tricks such as clapping on demand, picking up food with her thumb and finger, she has even sat herself back up a few times! She has begun to realize when mommy and daddy are not around, she is more aware of her surrounding and recognizes familiar places and faces. She loves to eat everything! And is growing like crazy! She’s 29″ tall, weighs 20lb and can scream louder than me! This is all such great progress and we enjoy each moment watching her discover and learn new things.
We met with Dr. Ko for a follow up clinic visit Tuesday , and she thinks Colbey Raye is looking wonderful! We did learn that her EEG is still showing very abnormal epileptic energy in her background but there were no seizures detected during the 3 hour EEG. Her background looks very similar to what it was prior to her operation and the epileptic “surges” are still coming from the same areas as before. This is good in the sense that there are no new/different areas involved and also that the right side of Colbey Raye’s brain is still completely normal, but it is an indictor that she is still at a heightened risk for seizures and that these “twitchy” and starring episodes she has been having could be seizure activity breaking through. We had an EKG done as a precaution to make sure there are no abnormalities with Colbey heart in the event that we need to start a 4th medication, the results came back normal! We do not have any plans to add a 4th medication at this time (or any time soon hopefully) but if the time comes we will be prepared.
Colbey Raye is starting weekly physical therapy as we have begun to notice weakness in her right leg as well as the continued weakness in her right arm and hand, also she will be starting occupational therapy and has her first assessment this week. Tests and exams to come: hearing test, eye exam, blood work, urine sample, virology visit, and 6week post operation follow up. Few busy month ahead of us!! Hopefully we won’t have anything new added on!
Giving thanks, an update on Colbey’s recent tests, tests to come, and now…… What is going on inside my head?
Some days I struggle to find the words I want to use to best describe my thoughts and to relay the most accurate facts about recent finding or current concerns. There is so much information that flows into my brain, I know I can’t retain it all, but my hope is between the notes I jot down and the info my brain deems important I will be able to compile an accurate summary. It can take a day or so for me to really put it all together and comprehend what’s been discussed and I begin to understand more after I let it all settle into my brain. Today my thoughts are a bit jumbled and my mind won’t rest long enough for me to connect the dots, if there are any dots to even be connected. I do not want to go into detail, as I don’t have as much information as I’d like, about all we discussed on Tuesday with Colbey Raye’s neurologist. I will share that after looking at a sample of Colbey Raye’s brain tissue under the microscope it has been confirmed that the thickened areas of her brain are in fact Cortical Dysplasia. Her doctors were very certain it was but it’s never factual until confirmed once looked at under the microscope. Along with this confirmed find there was also another find, an infection, that has caused more questions to arise. We still do not know if this is something to be concerned about or not, we will be looking deeper into this, getting more tests, seeing more doctors and looking back into Colbey Raye’s first blood work ups. We’ve been informed there could be no affiliation between the Dysplasia and this infection, but also we have been informed that there is a small chance the infection could be the underlying cause. More questions than answers right now for us and for the doctors, but we are hopeful this is just a hiccup and there will be no link between the two! Prayer and more prayers right now as we wait for more information and results.