Wednesday, December 22, 2010

Jessie is Home !

After a nice Christmas Concert at Cook Children's Medical Center with Randy Travis, Charlie Pride, and some other Country stars, Jessie was released and is now home.

Pictures below, including one with Jessie and Randy Travis.

So, Jessie is beginning to feel much better and we feel blessed to have her home. On the down side, she has had 3 seizures since surgery. That really bites. It is too early to call the surgery unsuccessful. We'll give it a few months, and give her brain time to heal from the trauma of brain surgery, and then we will know for sure.

No need to speculate until then. One Day at a time and Thanks to God ! Thanks to you all for your prayers, emails, Facebookings, Texts, Calls, Gifts, Visits. We Love You.

Blessings to all for a Merry Christmas. Cris

Monday, December 20, 2010

Things are Looking Up!

Hi All,

It looks like we have turned the corner on Jessies' Redo surgery. Tomorrow will be day 6, and she is turning the corner and beginning to feel pretty good again. She still has a few more days in the hospital, I'm certain, and the swelling is still pretty bad, but we are seeing smiles again.

For those of you who are not aware, 5 days ago, Jessie underwent a redo hemispherectomy surgery to battle returning seizures from her original Hemispherectomy in 2008 for Rasmussen's. Her original surgery was at Johns Hopkins by Dr. Ben Carson, and the Redo was performed at Cook Children's in Fort Worth, Texas by Dr. David Donahue.

Even though her original hemispherectomy was anatomical, there was some tissue and connections that were remaining and seizing. Dr. Donahue retraced a complete Corpus Collosotomy and disconnected some other tissue in the frontal lobe that was remaining.

I can't tell you if this surgery was successful yet, and really shouldn't try for months...and even then, it will be an optimistic guess. All of you know who have Hemi Kids know what I mean.

Jessie had a really rough time over the past few days, but is now starting to "turn the corner", and finally ate today and even held it down. She has been plagued with nausea, headaches, and lethargy since surgery, most likely from Chemical Meningitis. This is fairly common for these type of surgeries.

I continue to update regularly on Facebook.

Thanks for all of your support. I think that Jessie will be home for Christmas...hopefully seizure free for good.

Kind Regards,

Cris and Kristi Hall

To Learn More about Hemispherectomy, see

Saturday, December 18, 2010

Post Surgical Trials

Quick Update on Jessie. I am mostly doing my updates on Facebook now, so if you are looking for more up-to-date status, please send a Friend Request to Cris Hall.

Jessie had 104.2 fever earlier. This sounds bad, but after brain surgery, this does not indicate a bacterial infection like it would in you or I. Basically, the spinal fluid has so much debris in it, the body goes into an immune response with fever. Hopefully over the next few days, this will get better.

She is still unable to hold food down, and is mostly lethargic, not drinking or eating.

She is out of PICU, and we are in a private room, which is nice. Kristi’s mom and dad are here now, and that made Jessie smile this morning. She has not had any more seizures, since the one immediately post surgery. Hopefully, that was just due to post-surgical irritation.

Thanks for all of your prayers.

Kind Blessings to all of you.

Cris and Kristi

Wednesday, December 15, 2010

Surgery Tomorrow

Today, we will be at Cook Children’s Medical Center for Pre-Op, Registration, and all the other pre-operative stuff that you have to do. Jessie’s surgery will be Thursday (tomorrow). I will try to keep everyone updated, probably on Facebook, as that seems to be the most used media these days.

The increase in Tegretol has kept Jessie’s seizure to only a couple a day, and not very intense, so she has been able to continue in school this week. Her seizures look something like a combination of a complex partial, and simple partial seizure, beginning with a tummy ache, then staring, and some twitching in her right eye. They are mild, but they continue to break through the Tegretol dose. It is just a matter of time til we would be back in the ER like last week.

The saddest part, is that yet another year, she misses her class Christmas Party. This is pretty important to a 2nd grader, but she hasn’t complained one time. Kristi and I were looking at our vacation spent this year, and over ½ was spent for hospital time. Really, this has been a harder year for Jessie than her 1st complete year after surgery. We pray that this will be the last one.

So, Dr. Donahue will be going after some tissue and connections that are firing up on the SPECT Scan when Jessie is seizing. It is small amounts of tissue and two connections that need to be severed. Unfortunately, It is full-open, brain surgery just like her 2008 Hemispherectomy. Fortunately, recovery shouldn’t be as long as the first surgery. If all goes well, her stay at Cooks shouldn’t be over a week….God willing less.

On the bright side of things, if Jessie feels well, Christmas time at Cook Children’s is magical. They really spoil the kiddos there all the time, but Christmas is over the top.

Kristi and I once again ask for your prayers. It seems like every time we turn around, we are asking everyone to pray for Jessie. We are not too proud to keep asking, so please pray for Jessie and her doctors and for a quick recovery.


Cris and Kristi Hall

Thursday, December 9, 2010

A Little Bit of Christmas Fun!

Amongst all the craziness that seizures bring to our life, Jessie and I were able to go with her Brownie troop to see the play Rudolph at Casa Manana last Saturday. Jessie and her troop dressed up to attend the play, take tickets, and pass out play bills. The girls (and their moms!) had a great time! I took this picture before we left for the play . . . Jessie looks so grown up! No one knew that we were hiding 29 staples from her scar revision and EEG glue with that cute hat!

Tuesday, December 7, 2010

Jessie's Surgery Date Set

Surgery Date Set

It’s been almost 3 and ½ years since we traveled to Johns Hopkins for Jessie’s initial brain surgery. Any time a hemispherectomy is performed; there is a chance that seizures will return, although they are usually less frequent and less severe than before surgery. We have watched many families go through a second surgery, and have always hoped that this wouldn’t happen to Jessie.

But here we are…..

I have said this many times, and I continue to emphasize it. We are blessed. There are many families, who we have met, that have no options of treatment, no hope for a brighter future. As hard as it may be to believe, we are the lucky ones. We have options and we have hope that Jessie can lead a life free of seizures.

This is what this second surgery is all about. It is about giving her that chance. Watching what the seizures did to her last week in the hospital made it an easy decision. Starting to carry Diastat (Seizure Rescue Medication) again, and increasing her seizure medication just brought back all of the old memories, but this time the decision was easy. Brain surgery is not the only option. We could try increased doses of seizure medication, and that might work, or maybe not. Brain surgery might not even work, but if it does, she can be free of the seizures and medications of epilepsy.

There are no guarantees with brain surgery, and the risks are real and present. On the positive side, however, and if all goes well, her hospital stay shouldn’t be nearly as long as after her hemispherectomy. Also, she shouldn’t lose any function that she currently has, which means no in-patient rehab on the 6th Floor at Cooks.

So, Surgery is scheduled for Thursday, Dec. 16th at Cook Children’s Medical Center. Dr. David Donahue will be doing the surgery. We are confident that he can do the job, as he has considerable hemispherectomy experience. This means that we will not be traveling to Johns Hopkins for this surgery. Dr. Donahue has been taking care of Jessie with shunt surgery and revisions, and we are confident that he can do a fine job on this surgery.

Thanks to all of you for your prayers and gifts for Jessie. Please keep the prayers up. We respectfully ask that in place of gifts, you send a card or make a donation in Jessie’s honor to one of the following organizations.

The Hemispherectomy Foundation

The RE Children’s Project

Citizens United for Research in Epilepsy

Blessings to All,

Thursday, December 2, 2010

Seizures and What to do Next

Jessie is having a much better day today. She is eating again, smiling, and active. She is a different kid than she was yesterday. She even did her homework today. Praise God and the doctors for watching over our girl !!

Her seizures today are much less severe and less frequent. Because they had to give her rescue medicine 2 days ago (Ativan) for a Status Seizure (one that won’t stop on its own), and other sedation for yesterday’s MRI, it appears that the cycle is broken, temporarily. This buys us some time and allows her to gain strength, eat, and rest from the seizures. Here primary epilepsy medication (Tegretol) has been increased, and will continue to increase to hold off the seizure activity.

Dr. Hernandez (epileptologist) came by today, and showed me her EEG. It was obvious that she was having seizures in the right hemisphere. He also showed me her MRI today. He showed me that there was some leftover tissue and two connections that were the suspect areas. The SPECT scans should verify this. We will know tomorrow.

The good news is that there is no seizure activity in the Left Hemisphere (her good side). This, of-course, would be devastating news for a child that only has the left half of her Cerebral Cortex.

So what are the next steps? Well, unfortunately, it looks like Jessie will have to undergo brain surgery to have this tissue removed and the connections clipped. Medication is usually very ineffective, in the long-term, for Rasmussen’s tissue, and Kristi and I don’t want to take a chance with the connections that are still there. The last thing that we need is seizure activity crossing over to the good Hemisphere. This follow-up surgery is not uncommon in the Hemispherectomy community…which is unfortunate. In the “Hemi Community” we call this surgery a “Redo”, which is bit of a misnomer.

The rehabilitation should be much easier this time, and her hospital stay should be much shorter than in 2008. As you all know, Jessie an extremely strong-willed child, and she is going to be fine, especially with all of you praying for her and God continuing with His glorious plan for her.

Thanks to everyone for your prayers, cards, gifts and visits. The prayers are the most important thing. We ask that if feel compelled to do something for Jessie over the next few weeks, please consider a donation to one of the following Public Charities in Jessie’s Name. You can donate online or by mail, just specify “Jessie Hall” in the comment field. All three below are IRS 501c3 organizations, which means you get a nice end-of-the-year deduction.

The Hemispherectomy Foundation :
The RE Children’s Project :
Citizen’s United for Research in Epilepsy :

Blessings to All for your support over the past few days.


Tuesday, November 30, 2010

Seizures Have Returned

Unfortunately, it looks like Jessie is having seizures again. She is currently in the EMU at Cook Children's in Fort Worth, and the epileptologists believe that she has some seizure activity coming from her hemispherectomy side, from a missed connection and brain tissue left behind in the first surgery. It is deep tissue, and hard to pick up on the scalp EEG.

There is some activity on that side, but thank God, there is no activity coming from her good left side. They did a SPECT Scan (like a PET only it looks at blood flow vs sugar uptake...idea being seizure tissue causes more blood flow to seizure area). The results from the SPECT are not in yet.

In addition, they will do a T3 detailed MRI tomorrow. At that point, they will make the decision on what to do.

Today, she required Ativan to stop a status seizure. She is not doing well, and is eating very little. They are slowly increasing her tegretol, however, we have told the epileptologist and surgeon that if they can pinpoint the tissue and connection, that we want it out and NOW! AEDs and other meds have very little long-term effect on Rasmussen's Encephalitis inflamed tissue.

We continue to trust in God and His Plan, and ask for your prayers for Jessie. We believe in the power of prayer and good medical treatment.

Blessings to All,

Sunday, November 7, 2010

The Hemi Lighted Forest of Hope!

Christmas Time is coming early this year, so if work and life is getting you down and you need a good shot of "Feel Good". Check out this story, and especially the link to the images and audio. You'll be glad that you did. This is Kristi's Mom and Dad who did all of this and we hope to see it in the national spotlight soon. Enjoy and Blessings!! Cris

The Hemi Lighted Forest of Hope is a celebration of LIFE and HOPE for children all over the world, who have had their lives turned upside down, in a battle against intractable epilepsy. These children all underwent radical brain surgery in HOPE of living a life seizure free. A tree will be lighted for each child who has undergone Hemispherectomy Brain Surgery and who has registered with The Hemispherectomy Foundation. These ...trees and lights represent a celebration of each child’s HOPE for a life without epilepsy.

This year, 421 trees will be lit and each year more trees and lights will be added to the Hemi Lighted Forest of Hope.

The Lighted Forest Facts :

65,000 lights or 3.47 Miles of continuous lighting

4.5 Acres of Trees

2,000 Feet of underground wiring

450 Extension Cords

440 String of Multicolored LED Christmas Lights

Amazing Vido and Story Here. This is REALLY Cool !

Images and Audio -

Story -

To find out more about The Hemispherectomy Foundation, go to

Google htpp://

Saturday, October 30, 2010

In for Follow-Up MRI one Day, Brain Surgery the Next

Jessie is now sporting a new foot-long scar on the back of her head thanks to the most recent round of shunt-revision surgery that took place on Friday morning.

The good news, is that she is already home and doing GREAT, except for a huge scar running down the back of her head.

On Thursday, we went into Cook Children's Hospital for a routine, follow-up MRI. After the scan, a nurse came in and asked us to stick-around. We knew this couldn't be good. So they found that the Low-Pressure VP shunt that they put in two months ago was working great, and her venticles were nearly normal size again. Unfortunately, there was now a subdural pocket of CSF on the top of her brain. This was caused by the brain colapsing to normal size after being under pressure for so long. Unfortunately, this was pushing the brain past mid-line into the Hemispherectomy space and also pressing on the brain stem.

Jessie was experiencing no symptoms of pressure, in fact, most of her symptoms from earlier hydrocephalus had resolved.

So, she was admitted for surgery and Friday morning, the shunt was revised with a new branch of tubing to drain from this area as well. The scar is great for halloween.

Jessie is doing great, home and playing. We'll get another MRI in a week or so. Hopefully things will be better then.

Thanks for all the prayers and encouragement from our friends an family.


Wednesday, October 13, 2010

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



Sunday, October 10, 2010

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 :

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!


Wednesday, September 1, 2010

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

Thanks for all of your support and encouragement.

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

Thursday, August 12, 2010

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,


Monday, August 9, 2010

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 :
(Dedicated to children and families who have endured Hemispherectomy Brain Surgery)

The RE Children's Project :
(Dedicated to finding a cure for Rasmussen's Encephalitis )

God Bless,


Saturday, August 7, 2010

Jessie is Home from the Hospital

Jessie is home from the hospital after a successfuly shunt placement for hydrochephalus. While we had no choice but to have the shunt placed to relieve pressure on her brain, there is now a whole new set of things that we have to watch for.

Right now, she is having a very difficult time keeping down food and liquids. We have to take it very slow, and she mostly has to lay on her back. When she sits up, she will get sick and throw-up everything that we've spent the past hour trying to get her to hold down.

If she doesn't start holding things down better by Monday, we may have to put her back in the hospital. I'm really surprised that they sent her home so quickly, but they did.

Right now, our biggest concern is that the shunt is overdraining and she actually doesn't have enough spinal fluid and pressure.

Thanks for all of your continued prayers.


Tuesday, August 3, 2010

Brain Surgery #2

Jessie has been going down-hill lately, as the hydrocephalus continues to get worse. Last week, it seemed like tegretol was calming things down, but now, her episodes are getting more frequent again, even with an increase of Tegretol.

Dr. Carson (Hopkins), Dr. Mathern (UCLA), and Dr. Donahue (Cook Children's) all agreed that we need to go ahead and move forward with surgery to place a Shunt in Jessie's Brain to relieve the increased pressure and build-up of spinal fluid. Surgery is scheduled for Thursday, Aug. 5th at Cook Children's Hospital. Dr. Donahue will be performing the surgery.

Here are a few links if you are interested:

This video is kinda graphic, but very cool.

Most literature outlines several symptoms of hydrocephalus, which quite frankly, we haven't seen. These are usually things like headache, dizziness, sleepiness, and vomiting. She has really only exhibited some vomiting. She has had none of the other symptoms. We believe that her pressure has built very slowly over the past two years, and therefore, she has been able to deal with it pretty well.

I've outlined the things that we have seen over the past two years, which may be attributed to building hydrocephalus. This doesn't mean that just because your child exhibits these that they may have hydrocephalus, but it may be worth exploring with your child's neurologist.

1.) rocking
2.) nervous hands
3.) hand strumming
4.) tummy episodes
5.) vomiting
6.) biting clothes
7.) hurts when we rub her neck
8.) left bug eye
9.) behavior
10.) ventricle size (obvious on MRI or CT )
11.) nose wiping
12.) lip picking
13,) lip / finger preseverating
14.) general nervousness
15.) bad short term memory
16.) loses focus

Currently, we do not believe that Jessie's symptoms are seizures. That is our prayer. We also pray that the surgeons and staff at Cook's Children's Hospital do the very best that they can to get us through this bump in the road. We pray for no infections, no complication, no over-draining, and a quick recovery.

God Bless,


Thursday, July 22, 2010

Good News!! Hydrocephalus?!?!?

Hydrocephalus is basically the build-up of cerebral spinal fluid (CSF) pressure in the brain. If you are interested in reading more, here is a link in Wikipedia, but it is very frightening stuff, most of which doesn't apply to Jessie.

So what does that have to do with Jessie? Well, the neurologist (epileptologist)/neurosurgeon at Cook Children's Hospital now believe that Jessie has Hydrocephalus. Evidently, the MRI that was taken yesterday (Wednesday) was very telling. Also, Dr. Perry (Epileptologist) was nice enough to call us immediately after he read the MRI, and let us know his finding.

What he said, was that their diagnosis of seizures was only from the clinical presentation of episodes that looked very much like seizures, and that the EEG didn't show seizure activity after a close look. The MRI, on the other hand showed signs of Hydrocephalus that could explain all of her symptoms. The main thing that they noted was that the ventricles were significantly large than they were a year and a half ago. Indicating increased fluid and pressure.

So why is tegretol slowing down the episodes? We'll evidently, the soothing effect of Epilepsy medicines can do that when the brain is irritated from the pressure. The interesting thing is that Jessie has had the tummy episodes since immediately post surgery, so she has probably been dealing with this mild hydrocephalus for a couple of years. There is really no way to know for sure.

What do we do next? Well, Dr. Hunnicut said that he needs to put a shunt in. A shunt is like a tiny tube in Jessie's brain that helps regulate the pressure. Many hemi children have one, but we hoped that Jessie would not, because they can malfunction and need adjustments, etc... Without it, however, hydrocephalus can cause brain damage.

So, now we have an opinion from Cooks in Fort Worth. Next stop Johns Hopkins and UCLA. Luckily we don't have to actually go there. We are having all of Jessie's tests sent to Johns Hopkins and UCLA. The Doctors at Hopkins (Mathern/Sankar) and the Doctors at Hopkins (Carson / Vining) will look over the data and come up with their opinion. If they all agree with Hydrocephalus, then will will schedule surgery sometime in August for a shunt.

Shunt surgery is a short brain surgery and not nearly as invasive as a Hemi Redo. You can read about them online if you are interested. We plan to stay at Cooks for the shunt surgery if needed.

So if the hospitals don't agree??? We'll cross that road if we have to.

The take away from this confusing blog post is Good News. Things could have been much worse had Jessie needed a Redo Hemi Surgery to get missed tissue and connections. And things would have been really bad had she had seizures originating from the good sign of her brain, or God forbid, Bilateral Rasmussen's Encephalitis.

Hydrocephalus?? Who would have thought it?

Thanks to everyone for reading and keeping up with Jessie. I want to let you know that she is in GREAT spirits and still has that great smile on her face all the time.

Jessie's Dad

Saturday, July 17, 2010

Complex Partial and Simple Partial Seizures Confirmed on EEG

During the past 24 hours, the neurologist at Cook Children's caught enough on the EEG to Confirm that Jessie is having Complex and Simple Partial Seizures. Weekends at the hospital are slow, so we don't have a detailed report yet, but we hope to find out on Monday more info such as origin point of seizures, and how many subclinicals seizures are going on.

We pushed the button (seizure button) 10 times just in 24 hours, so there are a lot that we saw and probably more that we didn't.

She is on Tegretol again, started today, and the seizure activity immediately went down. We'll see what Tegretol does over the next few weeks, as we get a new MRI, and as 2nd/3rd opinion.

Right now, we don't know the next steps, and that could take weeks to determine. We appreciate all of your prayers as we work through this difficult time.

On the positive side, Jessie is in GREAT spirits, as always. She loves life and is still the happiest kid that I know.



Thursday, July 15, 2010

Seizures or Not? Unfortunately it Looks Like Seizures

Over the past two years, Jessie has been seizure free. Occasionally, she would have an upset stomach, but for the most part, we attributed this to GI issues. They were short, and didn't disrupt her ability to live a normal life.

Starting last Sunday, she began to get a twitch in her right eye during these episodes, so we immediately went to her pediatric epileptologist at Cook Children's Hospitl, Dr. Malik. We were so thankful that he got us so quickly. Jessie also underwent a 30 minute EEG. Nothing showed up on the EEG, and so Dr. Malik suggested that we wait and see what happens. We agreed.

Yesterday, we captured a video of one of Jessie's Eye episodes. She is now having them a couple of times per day. They start with an upset stomach and she sometimes vomits, then this right eye twitching begins.

Click Here to View on YouTube :
The only reason that she is touching her nose, is because we ask her to do this to try to suppress the activity. It obviously doesn't work.

After seeing this video, Dr. Malik believes that they ARE seizures, so Jessie has been scheduled for a Video EEG and some time at Cook Children's Hospital's Epilepsy Monitoring Unit. She will be there starting 1st thing Friday morning.

I have always been very honest on this blog, and I will continue to be so. When things are going good, it is fun to read, but when things are bad, not so much.

Thanks to all of you for your prayers over this difficult time. Please continue your prayers for Jessie and God Bless you for your words of support.

Jessie's Dad

Saturday, May 8, 2010

2010 Daddy Daughter Dance

I am so proud of this little girl, and tonight, she was my lovely date! The 2010 New River Fellowship Daddy Daughter Dance was a big hit. Jessie started talking about it as soon as I got home from work. She wanted to make sure that we didn't miss a dance.

So, while mom and Jessie primped and made pretty, and did the best that I could with this old man, and we made a cute couple thanks to Jessie. She helped me pick out my suit and tie, and even my shoes. She said for me to wear my "Doctor's Shoes". (leather wing-tips)

So, after being asked, "Is it time to go now?" about 100 times, we finally left for the church gymnasium. Inside, we had our picture taken, had punch and cake, and dance our hineys off. We danced to MC Hammer's "Can't Touch This", "The Chicken Dance", "Cotton-Eyed Joe", and "Dance with Cinerella". A Magical Night!

And of course, Jessie's personality always leading the way to having a good time. Did I tell you that I Love this girl.

So until Next year's Daddy Daughter Dance, I guess we will have to practice in the living room as often as possible.

Now Jessie is ready to run The Hemi Foundation Dreams of Wings 5K. May 15th in Weatherford. Register now to run it in Weatherford or as a virtual runner. There are only a few more days left to register.
There will be a National Television Show filming at this event, so don't miss out! Great Food, Great Bands. It will be a PARTY!!

Saturday, May 1, 2010

Jessie's Dyna-Splints

Jessie received two new splints this week to wear at night. These are from DynaSplint ( and are two help her loosen her hand and ankle.

The First is for her ankle, and basically pushes up on her foot to stretch out the muscles which tighten over time and point her toe downward. She doesn't mind sleeping in them and so we will watch and see what kind of results she gets.

This one holds her finders out and her hand in an upward position. I can't beleive that she sleeps in these things, but she doesn't seem to mind. This means that she doesn't have to wear them during the day. It's like therapy while she sleeps.
She was also fitted for another day brace for her leg to keep her from hyper-extending her knee, but as soon as Kristi and I saw her walk in it, we said "no way". It was like 2 steps backward, plus it didn't keep her from hyper-extending her knee.
We'll continue to use the Walk-Aid, and the knee cage at home.

Wednesday, April 14, 2010

Dreams on Wings 5K Run / 1 Mile Walk on May 15th : Register Today

Please Join us for the Dreams on Wings 5K Race to Benefit Hemi Foundation Children!
You can register NOW on the links below or by printing a form for mail!
Don’t Live Near?, Sign-Up and be part of the many Virtual Runners!

Saturday, May 15, 2010
Weatherford, Texas

5K Chip-Timed, Certified Course
Late registration 6:30-7:45
Race starts at 8:00 am

The Hemispherectomy Foundation is a non-profit organization dedicated to providing emotional, financial, and educational support for individuals and their families who have undergone or will undergo a hemispherectomy, or similar brain surgery. All proceeds go toward providing college scholarships, trade school scholarships, camp fees, life-aid equipment, travel expenses, and other aid to these children. For more information about the foundation, go to

Click HERE to register online

Click HERE to download mail-in registration form.

Friday, April 9, 2010

Rasmussen's Encephalitis

Rasmussen's Encephalitis - The Search for a Cure

A good friend, and fellow Rasmussen's Dad is well underway in a concentrated effort to find a cure for Rasmussen's Encephalitis. Seth Wohlberg, whose daughter Grace had a hemispherectomy last year has created the RE Children's Project. Please check it out, and support this fine organization.

The RE Children's Project was founded in 2010 to increase awareness regarding Rasmussen's Encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure. The organization also supports research dedicated toward the recovery process following hemisphrectomy surgery, a life altering surgery that is the only known "cure" for the disease.

Wednesday, February 24, 2010

Hemi Foundation : Music Benefit - Baltimore - Feb 28th at 3:00PM

The Hemi Foundation Dreams on Wings Music Tour
The Hemi Foundation is proud to present this Sunday (2/28) at 3:00PM in Baltimore, Maryland the Dreams on Wings Music Tour. The foundation's Northeast Regional Director has put together an exciting musical event with outstanding musicians for your entertainment. It will be a family-friendly event, so come on out!!
The Dreams on Wings Music Tour will be held on this Sunday, February 28th at 3:00PM at Bourbon Street near downtown Baltimore.
The performing bands will be Starcrush, Broadcast, and Quikfire and the event will be emceed by Tyler Daniel from 103.7 FM.
Some special give-aways include AirTran Airline Tickets, Baltimore Orioles Autographed Ball and Glove, and much more!!
So if you live in the Washington D.C. / Baltimore / Philly area or anywhere within driving distance, come out and listen to some good music and support the Hemi Foundation. Kristi and I are flying in from Texas on Saturday and will be there.
You can buy tickets at the door, or on The Hemi Foundation website at .
Hope to see you there!!