Wednesday, January 21, 2009

Jessie is doing GREAT says Dr. Carson

Jessie Update
Jessie is doing well. We just got back from Baltimore where thedoctors gave her an A+ for her 6 month post-op checkups.

Her neurologist (Dr. Vining) told us to do one more EEG, and if itlooks good, she could taper off of Keppra, and be down to one AED(Tegretol, 100mg x 3 times daily). I love the idea of being down toone AED, but scared all at the same time.

They were very pleased with her arm and leg mobility, but we arecautious as we know things will tighten up as she moves forward.

In Baltimore, we took care of a lot of business. We met with thefoundation's OT and PT from Kennedy Krieger Rehab. We met with outNE Regional Director (Jane Stefanik)and our Specialty Director -Rasmussen's (Lynn Miller). We talked 2009 Conference and Reunion withthem and what we would like to do.We also had the priveledge of meeting with the LeFevers family who'sdaughter will be having surgery very soon.

It was an amazing trip, and the capstone was when Dr. Carson agreedto be The Honorary Chair of our Medical Advisory Board. This is the life story of Dr. Benjamin Solomon Carson, the Brain Surgeon that performed Jessie Hall’s hemispherectomy brain surgery. He is Christian and an extremely talented surgeon. Please pass this on to anyone you know who might be interested in it.
Gifted Hands: The Ben Carson Story
Airdate:Saturday, February 7 @ 8:00PM (ET) (7:00PM Central)
TNT Channel
He is also the Honorary Chair of The Hemispherectomy Foundation Medical Advisory Board.


Cris and Kristi


ELLE said...

I have never responded to a blog before but I have been following Jessie's story for months and continue to hold her and your family in my prayers. These children are precious and I am amazed at what they go through and tolerate. I'm not sure I, as an adult, would have the fortitude to do the same. They are an inspiration. I am curious, do you know how Macey is doing. She was the little girl who had all of the digestive problems. I hope she had a miracle too!

Jessie said...

We saw Macey last week, and she is doing pretty good. She still has a long way to go. Her and Jessie played for hours last week, and enjoyed each other so much. Her mom is trying to start a blog as well. You can find it on Blogs that we follow. I'm sure she would appreciate a comment and some encouragement.

Anonymous said...

Since someone asked and you have answered about Macey..., have you heard anything about Bella? Jessie's special friends are of interest to us too. Thanks!

ELLE said...

It would be nice to include these other babies while we continue to hold Jessie in our prayers.

Jessie said...

Bella, Oh Bella!! The smile of KKI. Check out this YouTube Video. She seems to be doing GREAT!!

These were many of the children that were in KKI with Jessie. Fond memories, indeed.

Anonymous said...

I'm so glad to see Jessie doing well! Sounds like everyone is on the fast track to a beautiful year ahead.

My husband Jason had a set back last week when he experienced stroke like sypmtoms, including slurred speech, horrible perseveration and aphasia, bad headache, and right side weakness. Little did we know that it was actually caused by a mild seizure. He experienced slight right arm weakness a couple times a few weeks before and also said he thought he was having seizures but they were barely noticable until the worse sypmtoms started last week. He was already on 1200mg of tegretol daily so they started him on 2000mg of Keppra daiy on top of his tegretol. I'm worried that he's being overmedicated. It seems like a lot of medicine! We are seeing a neurologist at UVA next week so maybe they will change things. He complains of being dizzy all the time. Anyway, enough about us! I just thought you might have some insight regarding our situation since you know more about seizures than I do.

Again, I'm happy for you guys! Jessie is doing amazing!!! Sending love your way!