The Worst Week of My Life

On Monday morning when we went in to say good morning to Elle she was very unresponsive. I'd describe it as catatonic.

We rushed her to the emergency room at Wolfsons Childrens Hospital. When they checked her vitals her temperature was 92.

In an effort to determine what was going on, they hooked her up to a EEG and immediately discovered she was having a seizure. They gave her an injection to control the seizure, and took her to get a CAT scan.

The CAT scan showed too much fluid in her brain ventricles, so they did an MRI. The MRI showed that her brain cortex did not form properly, a combination of conditions called Lissencephaly and Pachygyria, both of which are considered Neural Migration Disorders, meaning the brain didn't form properly long before birth.

All three of those terms cover an umbrella of conditions, just like if someone was to say they had cancer. Just like with cancer, there are many different types, each of which has its own origins and its own range of symptoms, ranging from mild to severe.

There's much we don't know yet, beyond the fact the she has an extremely rare genetic brain anomaly. In addition, we found out just a couple of weeks ago that she has hip displaysia, that will need to be treated.

There are some things we do know:

1. Her condition is not degenerative thank God
2. The neurosurgeon said no surgery is necessary.
3. Once they got her on seizure medication, she has had no further seizures and has been completely stable since Monday. The seizure did not cause any damage whatsoever. Although it took a week, she is 100% back to her normal self: a happy, giggly, smiley and squirmy beautiful little girl.
3. The orthopedic surgeon said that surgery should take care of her hip without any complications. Even with her neurology issues he feels there is a chance she may walk although the Neurologist feels that there is a very good chance she will never speak or walk. We, however...believe otherwise.
4. 90% of children who are prone to seizures outgrow it by age 2.
5. Aside from the brain anomaly, she's probably more healthy that most of the people you and I know. Heart, lungs, metabolism, immune system, etc. is all perfect
6. Given her condition, she has developed quite well so far, and is expected to continue doing so. Exactly what physical and mental developmental issues lie ahead no one knows, except for God.

I'm extremely grateful for the care she (and we) received at Wolfsons. She has a Neurosurgeon, Neuroradiologist, Neurologist, Geneticist, Orthopedic Surgeon, and more nurses, physicians and residents than I can count, all making sure she received the absolute best care available anywhere.

We have a very long road ahead of us. We're still figuring out specifically what's going on and what to do about it.

I'm going to believe with every fiber of my being that she will sit, and crawl, and walk, and talk, and read and write. I believe she'll go to school and graduate from college. Can I guarantee that by believing those things that any of it will happen? Of course not...There are no guarantees in life for any of us. But I can guarantee what will happen if I believe she can't do any of those things.

God gave Elle to me for a reason. He knows we'll do whatever is necessary for her. Very little is known about how the brain develops. We will find a way or we will make a way.

Thoughts, prayers and healing energy sent our way are much appreciated. We need them.

Love

Lori & Elle