If you are squeemish, Don't look at this...

OK, Today is starting off better than yesterday. Jessie had a good night, and is mostly awake today. She isn't saying much, and still has a blank expression on her face. They are slowly raising her head of her bed to about 30 degrees.

They have removed the catheter today as well as the arterial line. So less tubes means that the doctors think that things are better, and we agree.

We continue to pray that she will begin speaking more and we will start seeing more cognitive abilities.

She has had no more fever (which is very common for this type of surgery), and no seizures, which is also very common.



Here is a picture with some of her stuffed animals which were sent by all of you. She definitely has the most "PINK" room in the Pediatric ICU. She named the surgeon animal "Dr. Carson". He got a kick out of the fact that he was pink.

This next picture is pretty graphic, so if you don't want to look, don't. Since we have been all about truth an reality and sharing this experience, I decided that most of you would want to see this. Maybe not a good picture to share with the young ones. I think that she will win "Scar Comparisons" for the rest of her life....except for maybe with shark attack victims.

Honestly, the closure is very pretty and done quite well.

I know that today is the last day of the 24 hour Prayer Vigil that was started at our church, New River Fellowship. We so much appreciate all of you who signed up and lifted Jessie up in prayer. We also appreciate those of you who are praying on your own and who I know will continue to pray. As Dr. Carson says, "I know it works, I have seen it work".

God Bless each one of you.

Cris

Better Day than Yesterday

Today was a better day than yesterday. We pray that each day gets better for Jessie and we see more progress. We don't really know what to expect in terms of progress, and each kid recovers differently. The brain is such a complex machine, even the neurologists don't understand many things about the recovery process. I get the feeling that they don't want to say too much, in case she doesn't recover as well, or as quickly as they expect.

Today, she was awake more than yesterday. Her eyes were distant when I looked into them, and that is scary for parents, but I'm sure this will get better. For those of you who know Jessie and her dynamic, outgoing personality, you will understand that seeing her totally emotionless is hard to take. Dr. Carson says that personality doesn't change, so we are soooo looking forward to getting our Jessie back. I know that you are too. I'll let you know as things comes back.

Dr. Carson came by today. He said that things are going well, and he is encouraged by her left side movement. He reminded us that a whole lot of rewiring is going on right now in her brain and that we should be patient.

She listened to her brothers and grand parents on the phone today. We broke the rules in the PICU and used our cell phone.

She also honked Kristi's nose today...but with a blank look on her face. That was wierd, but encouraging at the same time. She wanted to put her finger in my ear and she kept raising her hand and looking at it. Strange behavior as her brain figures out how to work again.

All-in-All, we were encouraged by the day.

Cris

Head Placed at Midline

Great News! Today Jessie's head was turned to midline. (face-up). The tape was removed, and I feel sure that she is more comfortable now. She has said some more words today, but remains heavily sedated. I can't imagine what kind of things are going on in her brain right now, but I'm sure it is trying to figure out what to do.

I imagine a line of ants, and their path blocked by a stick. It takes a while for them to get back on track again with their duties, but they eventually figure it all out again and do it. Only with Jessie, it is with electrical brain synapse firing and connection.

We saw some more movement in her left fingers and toes...but very minor. The Neurologist on call today reaffirmed that ANY movement is more than they expect. So this is exciting.

The most exciting news today was running into the nice family from Mexico City today. They told us that a liver donor was found today and they were so excited. The transplant surgery is tonight. Yesterday, they were so distraught and hopeless. Time was running out. Now, they have hope again. They were so optimistic. Smiling and dreaming for a future that they thought was lost. It was so cool !!!

I'll try to update later tonight. -Cris

Jessie Update in Pediatric ICU

Today was a long day in the PICU. We were up there most of the day, except for some breaks for a bite to eat. Jessie is about the same as yesterday, maybe a little bit more alert. She remains heavily sedated and she is in obvious pain. She told us that her head hurt (scalp only...the brain has no nerves) and her throat (from being intubated).

The thing that is hardest for me, is that she is obviously scared, and I can't pick her up or give her a big hug. Her head is still to the right, and taped flat to the bed, so she still can't move her head. It must be an awful feeling to feel like you are held down by your head...I can't imagine.

Despite some reports from the media, Jessie is NOT sitting up and talking. I don't have any idea where that report came from. Jessie is still in bad shape. She is improving, but there is a long way to go. I'm sure we will see more improvement tomorrow.

We saw more movements on the left side today. These are small movements, and we are very excited by them, but the left side of her body is completely limp. This was to be expected.

She did talk a little today, but she was hard to understand. She said "Papa" - this is Kristi's
Dad. She likes him to sing to her. She said "Daddy", "Mommy", "IV Out", "I can see, but not very well." (one eye is swollen shut), and because of the surgery, she will only have half of her field of vision in both eyes).

She puckered up and gave us each a big kiss!!!

It was a hard day in the PICU. A little girl named Faith went to live with the angels today. She had sever hydrocephalus. She left her mom, dad, and twin-brother (Christopher) to carry on here. We all cried today with them. Please say a prayer for this family.

There is a family from Mexico City here, and their 11-month old son, Darel, will die unless he gets a liver transplant soon. We cried and prayed with their family tonight. Please say a prayer for Darel and his family.

I'm sorry for such a depressing blog today.

Al, Lynn, and Jodie Miller came up to visit Jessie today. Jodie had a Hemispherectomy 15 years ago, and is starting college in the Fall. She is a sweet girl. Despite the hard day, we ended on a good note. Seeing Jodie, reminded us of what Jessie can be someday. I've attached a picture of Jessie tonight, then us with Jodie.

We went out to eat with the Millers, and Jodie was brainstorming (or half-brainstorming as the case would be) ideas for new shirts to be sold to support The Hemispherectomy Foundation. Remember, these ideas are coming from an 18 year-old girl with only one cerebral hemisphere.

1) I only have half a brain, what's your excuse?

2) Anyone with half a brain knows that!

On another note, the brain surgeon, whom Jessie wrote "Texas Tech" on came by to visit her today. What a nice guy this one is. Maybe he'll see this and give us his thoughts on the best way to scrub permanent marker off your forehead.

Good night and God Bless you all for your support.

Cris

A Few More Words

Tonight, while we were visiting Jessie, she cried a little...more of a hard whimper. Kristi gave her a soft kiss and Jessie said "I want to go home now". Although it was heart wrenching, it is really a good thing.

Think about all the things that have to happen in your brain to do such a simple thing as cry and say "I want to go home now!".

First off, she cried...emotions in check. Second, she realized that she was in some pain, and her head was afixed to the bed and she couldn't move it, and all-in-all it sucked to be where she was. Awareness! Next, she thought about a solution as to how she might fix the problem...i.e., go home. She remembers home. Next her brain told her lungs, vocal chords, lips, tongue, etc...etc.. everything that it needed to do to compose sentences and breath and exhale in a way that forms words and sentences to say, "I want to go home now." Speech....Amazing. Praise God again and again!! This all happened while she is under heavy sedation!

OK, now we look at the left side of her body...the side that isn't supposed to work anymore. Today, Kristi was holding her left hand, and Jessie squeezed it softly, then lifted her arm. She lifted Kristi's arm up while they were holding hands. As far as I'm concerned, that's a miracle.

The nurse told us that Jessie responded in her left foot to pain and moved her leg away. Now think about all the things that have to happen from stimulus to reaction to make THAT happen. Praise God again!!!!

I don't really know if this is all reflexive movement, or what, but it is ALL encouraging. When we asked Dr. Vinning (Neurologist) if it was voluntary or reflexive, she responded that there must be some sort of "pathway" for those movements to happen. WOW!! Is that COOL or what?!

Tomorrow at 5:30 they will allow her head to move to midline "looking up". Hopefully she will be much more comfortable without her head affixed to the bed. It looks awfully uncomfortable, and God willing maybe they will let her wake up a bit.

God Bless You All. Take a day at a time, and know that today was a good day for Jessie. There were others in the Pediatric ICU that were not so lucky. Please say a little prayer for those that aren't doing well.