A lot has happened since my last post. I think where I left off, we had received a call from Cleveland Clinic about receiving Maddy's files. We called that following Tuesday and waited for their call. Cleveland is so large so a call the next day was not what would happen. We waited for 5 business days and I called again. They told us that since they didn't take Maddy's insurance that we would need to pay everything out of pocket. We had to call and register her, make a payment for the consultation and then schedule that appointment. We scheduled it for Friday, October 7th at 1:40. We began to make plans for Nathan to drive with a friend on Thursday afternoon.
We were so blessed for all the provision in so many ways. People generously gave to cover our appointment and expenses to and from Cleveland. We also had made a connection with friends in Cleveland, who let them stay with them after they arrived at 2 am on Friday morning. Nathan's friend wasn't able to go so his dad came and went. This is a picture of them at Chick-fil-a on their trip there.
I love this smiley girl!!!!
On Friday afternoon, they met with the doctor. Thanks for your prayers for clarity because we definitely got it! The doctor said that Maddy has hippocampal sclerosis. Her hippocampus in the left side of her brain has shrunk. Gone untreated, this can lead to dementia. The doctor said that this is a pretty straight forward case so more testing is not necessary. We will move forward with surgery. The way Cleveland Clinic works, they have a weekly meeting with neurologists, neuro-surgeons, epilepsy specialist, etc. and they discuss the cases they've seen and then collectively decide the best course of action. The doctor seems confident that the team will agree to move forward as he has recommended. They will call us this week to confirm the next step. Here's a picture of them at the appointment.
1. Is this necessary?
Hypocampal sclerosis, when untreated, will lead to dementia. Maddy is still having seizures, 1 every 2-3 weeks, so they think the medicine will help for a little bit longer but eventually won't work anymore.
2. Is this safe?
Because the hypcampus has shrunk, they would only remove that small portion and the scare tissue around it. He said that this is the most straight forward case he's had in years. The expected risks are 0-1%. Because this is a very common procedure, they don't expect any complications. Children who have this procedure have a 60-70% seizure-free success rate. That number because sometimes kids can start having seizures appear on the other side afterwards. Maddy has never had that issue before so they don't have any reason to think that may happen.
3. What's next?
The doctors will meet this week and then will contact us by the end of this week. After the procedure, it will take 3-5 days before we will be able to head home.
Some people have wondered if we are concerned about emotional and memory issues since they will be removing the part of her brain that controls that. They think that since it's already shrunk and isn't on her dominant side, that her right side has already picked up the load. The meds she has been on messes with her emotions and she's been having focus issues at school so we hope that this will help before any more damage occurs. We also know that the younger a child is, the better they can recover and their brain can heal.
This is all happened a little faster than we expected, but I am so that she will not have to undergo more testing, especially since this is so invasive. We are also grateful for answers and a name for what she's been struggling with so long...5 years...
Here's how you can pray:
1. Clear direction and guidance for where to go
2. Insurance will cover it. The doctor thinks that shouldn't be an issue but I'll have to make a few calls to get all that lined up because there seems to be miscommunication for that right now. Pray I will connect to the right people and get answers needed.
3. Peace as we move forward. This isn't our first choice but we know God loves her and is faithful to care for her more than we ever could.
Thanks for all you have done...prayers, support, encouragement, etc. We appreciate it so much!
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