Thursday, January 21, 2010

More adventures...

Faith and Daddy pose on Isle of Palms...

So our meeting with the epileptologists was wonderful, as I said before. The doctor was very smart and actually had common sense too! It was funny because after a few minutes with us, seeing all our materials, documents, research, etc he asked me if I was going to grade his office notes! Then he asked me where I practiced medicine! I told him, dryly, The School of Hard Knocks...

We asked a ton of questions about their opinions of her and her brain know, just to get their perspectives. I asked him about the thinning of the corpus collosum and he agreed with the research I had done about it. He said that this part of the brain developes around the 15th wk of gestation and usually when there are issues with it, they are issues that developed in utero, not necessarily after her stroke. Which is slightly painful for me to hear...we have always held to the belief that trauma during her birth caused her problems from her positioning and excess stress/time in the birth canal and problems with delivery. He said, based on what he saw and read in the notes, that he thought that she was probably predestined to have these problems, because of ALL the other diagnosis that have gone with it. Which, as Christians, we do believe that she was predestined but not based on that reasoning. It is a very murky subject, to be sure.

He also said that based on his experience, over the last, several decades, that she would probably be able to walk short distances but mostly rely on her wheelchair, that she would probably have SOME words but not be able to put together coherent, complex sentences and (this is especially interesting) that she would not do well in a standard, long term school situation or be able to attend regularly. (Which is great conformation on our homeschooling plans!) He said that, of course, most kids with serious brain injury and especially tumors usually have lifelong difficulty controlling seizures, which we knew. But they all agreed that their goal was to drastically decrease/eliminate her seizures, to the best they knew how. They were so sincere and didn't dismiss anything we said! We try to video most of Faith's seizures and usually when we try to show her regular neuro, he never wants to see them. But these doctors were like
"Do you have any more videos? This is so helpful!"

I am excited about the seizure conference and hopeful that they may come up with some other ideas or at the very least, a bunch of doctors getting together and reviewing her! My mission, now, is to make a permanent connection with these doctors. I shot each of them an email, thanking them for their time and tomorrow am sending out thank you letters. Hopefully, they will form a connection with her that will help us, in the future.

We got a quick lunch at the Crab Shack, our favorite restaurant on Folly Beach and picked up the dog at doggie daycare before heading to the beach to dip our toes in the sand, just once. The beach was wonderful, 70 degrees, and we found hundreds of starfish, littering the beach!
Faith with her favorite toy, the wrapper snapper, she is getting pretty good at pulling it apart~!


Katy said...

I bounce back and forth on the homeschooling thing for Charlie. I want him to go to preschool so he can be around other children, but I might homeschool him once he gets to elementary school.

I'm so glad the doctors were open and receptive to you!

therextras said...

That's a great toy!

So nice to see starfish! Not common the beaches here - 2.5 hours away.

More good details of the visit with the physicians - thank you for sharing. Giving other parents hope.

And thanks for not mentioning the food again, and making me hungry this late at night! ;)


Amber said...

I wanna live there! To have access to that would be awesome. :0)

Question: Does your public school offer home bound teaching? It might be something to look into...our school offers 2 hours a day, several days a week...where a teacher can come to your home. Just a thought!

Glad you had such a positive experience with the new docs!

Candace said...

You know they do have a homebound program but I am not that familiar with how they run it. I think it's pretty difficult to get cleared for it, from what I understand. But as I said, I am not very familiar with it. I don't know any kids who are on it.

Mo said...

Her smile makes me smile...thanks for sharing with us.