I was so anxious I didn't sleep. As the night went on, I felt myself spinning through every scenario that today would bring. I knew that Mabel wouldn't go to sleep easily for her EEG, even after being sleep deprived. Our girl is so unpredictable but sleeping is no longer her best suit. In fact, sleeping at night is about all she does anymore (unless of course she has an off day).
We arrived at the hospital early and got everything situated. 30 minutes into the test, Mabel had finally screamed herself to sleep. I had to roll off the bed like a ninja and crawl around the room so she thought I was gone. I couldn't help but laugh at myself in this new role on the floor of a hospital room-something that feels far more familiar than what I would like.
The test went fine.
We met with Dr. K afterwards and the results were surprisingly good! Mabel's EEG, although not normal, was better. This could mean several things:
We caught her during a pretty good 30 minutes, we have her on the right dosage of meds, or [at the bottom of my pessimistic list] would be that her seizures are in fact better.
The Dr. and I don't believe that's the case.
The EEG showed little seizure activity during the time that she was awake and more when she was asleep.
Of course I'm thrilled with the news! For now we are going to start weaning off of one of her 3 seizure meds-the one that is likely to be causing some of her irritability. It will take 9 weeks to fully wean her and that is if it is completely successful. However, if we notice a change in seizures we will stop the weaning process and be back at square one.
I asked Dr. K today what the difference was between a seizure disorder and a movement disorder. The problem with Mabel is that her body is constantly jerking and moving. Because she is getting bigger, it is much more difficult for me to see if the movement is localized (like a seizure) or constant (more movement associated.) Although I had done some research, I wanted to know what our options were as far as looking further into something like this for Mabel.
She agreed that this is our next step. A movement disorder is caused by a different part of the brain than actual epileptic activity. A deeper part. This would be diagnosed by looking at a 24-48 hour EEG and evaluating the difference between seizures and other movements.
If, in fact, Mabel has activity happening in the part of the brain that signals a movement disorder, there will be other options for medication that can treat her constant body movements.
This is encouraging news! We will be scheduling this test as soon as possible.
We will also be having a repeat MRI to see if there are any brain changes and another vision test, called a SVEP which will show us if the problems in Mabel's vision are actually caused in the brain or if they are caused in the fibers that link the eye to the brain. This may clue us in to other disorders or maybe just give us insight as to what is causing her lack of vision.
There was so much information and I left feeling really good about our discussion. Dr. K's number one priority is, of course, treating Mabel's seizures but also helping with her constant irritability.
At the conclusion of our talk, she basically told me that although we never be able to conclusively diagnose Mabel with a mitochondrial disorder, she still believes that is what we are dealing with. She just can't seem to shake the idea that our girl fits the symptoms.
I can't say that I disagree but knowing that we may never truly know is still so difficult.
On the way to the hospital today I told Rache that it sometimes feels like she were born 30 years too soon. In that time span, there may be a simple test to run for disorders like Mabel's and there may be a cure after that. Some day this may be a common illness.
For now, we are too far ahead of the game, medically speaking-and that feels so unfair.
I am completely exhausted tonight. I came home with a migraine and my nails bitten way too short. It's been a good couple months of rest away from Dr's and appointments but the familiar feeling of the day didn't take long to rush over me. It's something that we will always be doing, as long as I have this little girl. We will always be doctoring, caring and treating her. We will always be worrying, waiting and wondering.
Tonight I am rejoicing in good news and in the hope for days to come.
Hoping that we can come off of a medicine!
Hoping that we will see seizures stabilize!
Hoping that we will try new medicines that help Mabel be comfortable!
There is hope in hopeless places and I am here to testify.
Tonight, my hope is in the living God-the One who knows every hair on Mabel's head.
Every. single. beautiful. wild. enchanting. hair.
My hope is not here. It is not in this world or in these tests. This is not my home and I was not made for this. I was made for so much more.
[and so were you...]
Resting in the only peace I know tonight.
1 Corinthians 15:19
"If in Christ we have hope in this life only, we are of all people most to be pitied."
Thank you for all of your prayers and support today.
I could never do this alone and am so thankful I don't have to.