Straight "A"s

We're so proud of Jessie for her first 6 weeks of school, she received straight "A"s. She was quite pleased with herself, and that was the best part of it. Hopefully if she likes getting good marks, it will motivate her to keep it up.

If only we could see this from our "Fully Brained" Boys. Actually, they did pretty well also.

The first 6 weeks is always the easiest, but it was a GREAT way to start for Jessie, considering that she started the year off with shunt surgery due to hydrocephalus.

Also, The Hemi Foundation Christmas Card fund raiser has started. Please buy your cards this year in support of these amazing Kids. You can check out the ART work and order from The Hemi Foundation at
http://hemifoundation.intuitwebsites.com/XmasCards2010/2010Christmascards.html

Blessings,

Cris

The RE Children's Project : Finding a Cure for Rasmussen's Encephalitis

I just returned from the RE Children's Project Conference - The goal to one day find a cure for Rasmussen's Encephalitis.

The details and summary of the Conference can be found at :
http://rechildrens.com/blog/

Be sure to pass the word on Facebook, Twitter, and your personal Blogs. We desperately need to get the word out.

Thanks and God Bless!

Cris

Hydrocephalus Symptoms - Not by the Book

Hi All,

I just wanted to report that Jessie is doing so much better since her shunt
placement, and her neurologist is beginning to reduce Tegretol again, since it
turned out to not be seizures (even though it looked like seizures).

So, I have made a note of her pre-shunt symptoms, and noted which ones are
influenced by the shunt...or at least the best we can tell. This is not
science, but one parent to another to say "this is what we've observed". I hope
that it is useful in some way.

1.) rocking - Much Better, less rocking, even when she is excited.
2.) nervous hands - no noticealbe change
3.) hand strumming - completely gone (Many of you saw this at the Hemi Family
Retreat. She doesn't do it at all any more)
4.) tummy episodes -reduced significantly
5.) vomiting - reduced significantly
6.) biting clothes - gone
7.) hurts when we rub her neck - I don't think this is related
8.) left bug eye - gone
9.) behavior - Ideal Behavior
10.) ventricle size - Waiting for yesterday's MRI
11.) nose wiping - Gone
12.) lip picking - Still does it
13,) lip / finger preseverating - Less, but not gone
14.) general nervousness - Better
15.) bad short term memory - Better (She recently memorized a 14 line, 4 verse
poem called "I am Responsible for Me".
16.) loses focus - Better
17.) Startled Easily - Gone

So, what looked exactly like seizures a couple of months ago turned out to be
hydrocephalus. Or maybe the pressure was actually causing small seizures as
the brain was compressed. But the bottom line is that things are getting
better.

Thanks for all of your support and encouragement.

Cris
Jessie's Dad (R Hemi in 2008 for RE, L VP Shunt in 2010)
"Hope in One Hemisphere!"

Back Home and Jessie is Doing MUCH Better

Right Now, Jessie is in the living room and I am typing at my desk. The reason that I know that she is feeling much better is because she is giggling like a little girl as she watches iCarley. Well, and also that and she can sit up without getting a headache or barfing...

If you would have asked me 1 month ago what was going on, I would have told you 100% seizures, but the MRI told a different story. It just goes to show you that what you see on the outside, in terms of clinical symptoms, aren't always what you think. The brain is a very complex organ...even a half of a brain.

Hopefully as Jessie adjusts to the new "Normal" pressure, the old symptoms will be a thing of the past.

For those of you looking for Details about the shunt, it was a low pressure shunt and it was placed on the good side of her brain. Not sure of all the logic behind this, but it was what Dr. Carson suggested to Dr. Donahue. There can be many arguments made to put the shunt on the Hemi Side as well as the normal side of the brain. Who knows what might be the best method, best type of shunt, etc....

Thanks again for all of your support, prayers, and thoughts.

God Bless,

Cris

Back at Cook Children's

Unfortunately, Jessie is back in the hospital. We took her into the ER on Sunday after she began to dehydrate. She has been unable to keep much liquid down since surgery on Thursday. Her last meal was on Wednesday. The poor kid has been without food for almost a week. She has kept small amounts of liquid down, but not nearly enough, so she is on IV fluids.

Dr. Donahue says that it is her body getting used to the lack of pressure on the brain. It is possible that this is the case, and we hope for a better day tomorrow. It is also possible that the new shunt is overdoing it's job and draining too much CSF (cerebral spinal fluid).

I wish that I had more information and better news.

Thanks to everyone for the prayers, cards, and gifts for Jessie.

Jessie has all that she needs. I ask that if you feel like you want to do something, please don't send gifts. Instead, please donate to one of the following organizations:

The Hemispherectomy Foundation : http://www.HemiFoundation.org
(Dedicated to children and families who have endured Hemispherectomy Brain Surgery)
or

The RE Children's Project : http://www.rechildrens.org
(Dedicated to finding a cure for Rasmussen's Encephalitis )

God Bless,

Cris