There’s a lot of new right now. And to be honest, it’s scary and overwhelming and emotional… but isn’t that the place where God shows up?
In the midst of all the new, we had our consultation with Harper’s new neurologist at CHOC. First, let me just brag on God here and say how blessed we were to get an appointment so quickly and easily! People come from all over to this epilepsy center seeking care, and the referral process can take FORever.
We left NC one month ago. And we’ve already had our first appointment. That is unheard of!
Back when we made the difficult decision to move Harper’s care from Duke to John’s Hopkins, I remember how astounded I was by the level of care we received- the knowledge, the questions asked, the research, the options… it was incredible.
This was even greater.
These doctors had already studied Harper’s charts and history, and knew what had worked and what had not. They had looked at her images and her scans and tests and were familiar with her case before even talking with us. They already knew things that should be done and had recommendations for us.
That brought both good and bad news, as is the usual rollercoaster we are accustomed to with Harps. Good news- she is stable. Her condition is not improving, but she hasn’t gotten significantly worse, we have decent seizure control, and she isn’t showing signs of severe regression. Also good news- there are new medications they have here that we haven’t tried, so more options for her, including a better, less invasive rescue med for us to carry.
The negatives- based on what they’ve seen in her charts, they feel her case is most likely a rare one in which her condition is being caused by structural and/or genetic issues, and therefore no long term cure. In other words, we keep treating the symptoms the best we can as long as we can, but there is the likelihood that treatment options will run out down the road.
Now, before I go any further, let me clarify… I type that out because that is what THEY say. That is the opposition we face regularly when it comes to Harper. And it is what we have been told since a week before she was born. We stand firm on the fact that it is NOT what our God says! He has shown that already. She has superseded everything the doctors have said since the start, and that is because of what God is doing in her. We fully believe He has great plans for her, and that her life is meant to bring glory to Him.
Now, back to the rest of the report… in order for the new team to determine the best course of action at this point, she has to undergo a LOT of testing. For the first time, she’ll have genetic testing done to see if there is an underlying cause to the malformations in her brain, which could give insight to further treatment options. She’ll also have a detailed MRI under sedation (we’re waiting for that to be scheduled), and then in November she’ll be admitted to the hospital for a weeklong EEG study during which they’ll wean her medications to induce seizures in order to gain a better understanding of what type she is still having and what parts of the brain are being affected at this stage. We are also working on a potential updated neuropsych evaluation, and getting set back up for all of her therapies.
So, a lot of new territory, yet the same in a sense as we’ve faced this before. We trust God’s plan and provision, and know that His plan for us includes providing care for our kids. He is good, and He is good at being God!