Healthy Women's Expo

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The Hemispherectomy Foundation was given it's first chance to participate in a promotional event last week. The Weatherford Regional Medical Center's Healthy Women's Expo chaired by Denise Romine was holding it's annual Expo, and we were invited to be a part of it.

It was such an honor to be invited to be a part of the event and it gave us a chance to get the foundation name out into the public.

Several of the Foundation leaders went out and set up a beautiful and educational booth for The Hemispherectomy Foundation and were there to answer questions, talk to people and generally promote the foundation. The ladies from the foundation were Caren Jennings, Lindy Shelton, Traci Cottrell, and Laura Rasnick. Kristi wanted to be there, but had to take Jessie to therapy, but was there in spirit.

Here are some pictures from this spectacular event. Be sure to be there next year. This is an event that you don't want to miss. Thanks Denise for letting us be a part of it.

Rehab Goings On

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Jessie goes to rehab 9 times a week. (3 Physical Therapy, 3 Occupational Therapy, and 3 Speech Therapy. Here is some video of some of her PT with Luke in Weatherford, at Parker County PhysiCare. Remember, that the left side of her body is controlled by the right side of her brain...which isn't there anymore! With each day that passes, the left side of her brain learns more and more of what the right-side used to take care of. This is fascinating!

The stair steps has to be my favorite one. Look at the concentration on her face. By the way, her shoes are simple Wal-Mart shoes, with the sole taken out of the left side. There are a whole lot of very expensive shoe options out there for AFOs, but we are finding Wal-Mart to be as good as any. You just have to take the sole out of the AFO shoe. Also, it may be hard to put on the first week or so.

I like this video too, because Luke is playing with Jessie and making her chase him. She is having fun and doesn't even realize it is therapy.

She should actually be able to play a game of Kick Ball in a few months.

This is a good video of Jessie using her left arm, but don't let it fool you. She will not use that Left Arm without some encouragement. I think that sometimes she simple wishes that arm wasn't there. The idea is to get her to finally realize that she can use that arm and hand as a tool even if it is sub-functional. Then, it is like a domino effect...the more she uses it, the more functional it gets. Right now, though, she doesn't even want it on her body.

Praises to God for how far Jessie has come so far. She is now 3 1/2 months post surgery!

Cris

Clarification on Saebo Stretch, Botox, Adderall

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After reading a comment on today's post, I decided that I better write a bit of a clarification statement.

First off, I need to state that I'm only writing about how these things effect Jessie and it might be different for other kids. Keep trying things and do whatever works for your child.

Saebo Stretch is effective for stretching the fingers and thumb, but I believe that many other orthotics that are built for that purpose would work as well. If insurance will pay for one, get it, knowing that your child might need to "grow into it". Bottom line, I think that stretching the fingers and thumb at night are good for presentation of the hand at a minimum, maybe functional use too, but I'm not willing to stand behind that one yet. Jessie is a long way from any functional use of that hand. She may never get there.

Botox. The bottom line is that Botox does reduce the finger spacticity (tightness in the muscles and tendons). Most people say that this will only last for a few months and then you have to do it again. I agree with that statement. The idea, is to keep the spacticity down during the first year of recovery, and see if we can get some functionality back in the hand. It is near impossible with stiff fingers and thumb, but at least there will be a fighting chance if the fingers and thumb are loose. So that's the idea. We won't be able to say if it helped long-term for a couple of years, but in the short-term, it does loosen up those fingers and thumb.

As a side note, the Botox will help with the dorsiflection (drop toe) if injected in the hyper-toned calf muscle. Once again temporarily.

Last but not least. Adderall, which has nothing to do with the first two. Adderall is given to help Jessie focus. It is Amphetamine Salt tablets that are usually given in 5mg or 10mg doses to kids her age. This drug, seems to be helping with Jessie's focus, but we're not really ready to make that call yet. We're doing a blind study with Jessie's teacher to see if it is truly effective, and at what dose. The teacher gives Jessie a focus grade each day, and she doesn't know if Jessie has been given the drug or not. Right now, the drug does seem to have some positive impact on Jessie's focus, but we really don't have enough days (sample size) yet.

I'll definitely keep reporting on Botox and Adderall and other things as we move forward. I don't, however, want to mislead anyone in the "honeymoon" phase of a drug or treatment. So I'll try to be cautious in my reporting.

I hope that this helps.

God Bless,

Cris

http://www.hemifoundation.org

On Saebo Stretch and Adderall

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For many of you, this post will not be very interesting, but for those of you who have kids with right-side weakness, and paresis, these comments may be of some value.

Today, I'm going to talk about the Saebo Stretch. The Saebo "Stretch" is a hand and arm orthotic that is used to keep the muscles of the hand and arm stretched, so that they don't tighten up and present irregularly. When people (children and adults alike) have brain injuries from stroke, disease, or surgery, it is very common to wear an orthotic such as this.

So we don't get things confused, I'm talking about the Saebo Stretch, NOT the Saebo Flex. See pictures in this link. http://www.saebo.com/main.html I'm talking about the one on the right, not the exo-skeletal looking one on the left. Hopefully someday, we'll get to try the one on the left too, but it is used to try to regain functionality in the hand.

So what do we think about the Saebo Stretch? First of all, the Saebo Stretch doesn't come in pediatric sizes, so we convinced our OT at Cook's to order an adult small for Jessie. It was really too large for her, and it is hard to keep on. The fingers tend to come out of the straps.

So I went out to my work shop and began making revisions, and got it working pretty good, but quite honestly, her custom orthotic from KKI stays on better, so we mostly stick with it. Hopefully, as Jessie grows out of the custom hand orthotic, we can switch to the Saebo Stretch.

Saebo Stretch Advantages and Disadvantages
Advantages
1) Can be adjusted as the child grows
2) Adjusts to stretch the thumb and fingers more or less
3) Looks sporty compared to most orthotics

Disadvantages
1) Doesn't come in Pediatric sizes
2) Hard to put on at first
3) Isn't held in place by straps as well as a custom orthotic

So, there is good, and bad. Bottom line, if you can get insurance to pay for it, then get one and see if it works for you. Otherwise, stick with what you have to keep those fingers and thumb stretched out. If you have nothing, find something to keep those fingers and thumb stretched out and if Saebo Stretch is one of you options, get one. If you have a good Hanger http://www.hanger.com/Pages/HangerHome.aspx rep (or other similar company) nearby, see what they suggest, but in my opinion, something is better than nothing.

Also, we continue to try Botox and the initial results are favorable. I'll write about that and Adderall again soon.

God Bless,

Cris

http://www.hemifoundation.org/

Is that Captain Jack?!? with Jessie?!?

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What's a Pirate's favorite letter? "Arrrrrr!" OK, he had probably heard that joke a few (THOUSAND) times before, but Jessie felt like he needed to hear it one more time.

Friday was a good night, and things seemed kinda normal as we headed out for a family night of "Friday Night Lights" at the Aledo vs Weatherford football game. I'm not going to report the score, but let's just say that Aledo "plundered" and "pillaged" the Kangaroos.

It was a good weekend. It felt like the first fairly normal weekend. Matt had a sleep over, and Jessie played at a friends house. Jake and Josh acted like Thing 1 and Thing 2 and generally got into mischief like a couple of playful squirrels. Got into trouble too. They also pitched their first baseball game and did a fine job I might add.

--

I'm noticing that I have been posting less and less. I guess that means that maybe things are getting back to normal a bit. I'm sure that people are reading less and less too. That is a good thing. Quite frankly, our life was pretty boring up until last year.

Church was nice this morning. Our new full-time pastor at New River Fellowship seems to really have a fire lit under his pants. He is excited and it shows when he is speaking. The congregation has almost doubled since we started going to NRF; way back before Easter. There is not enough seats for everyone, so they've had to start a Saturday Night service. Kids church, where our kids go, has gone from 40 to almost 80 kids. Wow!! There are some wonderful people like Megan Lacefield and Jarrod Smith and Voluteers like Clint and Kim Brewer and many others that really keep things moving with the kids. I wish that I had 1/2 their energy.

Today's sermon really made me think about the past few months. It was all about who's plan you should follow. Many of you know what I mean. I was following this plan that I had. I'm a good planner; I have been all my life. I plan for retirement. I plan for the kids college. I plan for vacations a year in advance. I plan for things that might not even happen. I like having a plan.

I don't remember the exact point in which it happened, the point at which I gave up my plan. It was probably over several weeks, but I do remember at some point, I said to God (and I don't mean figuratively said, I MEAN literally spoke out loud). I said, "I can't do this any more God. I need You to take over or I'm not going to make it!" and He did.

Now I find myself talking to God less (much like I find myself posting less to this blog) and feeling more comfortable about life, and quite frankly it scares me. I don't want to let go of what I've found and get caught up in trying to follow MY plan again...cause my plan doesn't really matter in the Big Picture!!

And you know what? I don't think that I will. I just think that God has taken me off his ship and is letting me walk again on my own. Testing the ol' "sea legs", and it scares me to death. It's kind of like being a toddler again, not unlike Jessie. I guess that we're all learning how to walk again and find the right path to take.

I'm pretty sure that I know the path that He wants me to take, and I'm pretty sure that many of you do too.

Blessings,

Cris

http://www.hemifoundation.org

The Doctors - Jessie's Episode on Thursday Sept. 11th

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Oh, I almost forgot...Jessie's appearance on The Doctors will be on Thursday Sept. 11th. http://www.thedoctorstv.com/

You know, I just realized that it is going to be on September 11th...what an awful day. We will all have plenty to pray for that day.

So, Jessie has about a 20 minute spot on The Doctors. I haven't seen the final results, however, during taping, it seemed that they were doing an incredible job on education and awareness...Of Course on TV, you never know what the final product will look like. The Hemispherectomy Foundation should get a good plug as well.

Jessie was pretty quiet during taping. I think that the studio audience freaked her out a little. Heck, it freaked me out a little too.

The show premiers tomorrow (9/8/2008), but Jessie's episode is on the 11th and will be seen all over the US and world.

Here are a couple of the times that I found for our local stations. It will be shown in ALL cities across the US
Dallas / Fort Worth - The Doctors will air on KTXA - 21 at 5:00PM CST.
Baltimore - The Doctors will air on WMAR ABC2 - at 4:00PM EST.

Let us know what you think about it when you see it if you have a minute to post a comment. We struggled with whether this was the right way to go with this, and prayed often. Our final decision took place way back in June (The day after Jessie's surgery) after talking with our family and was based on the goal of making the public aware of Rasmussen's Encephalitis, hemispherectomy surgery, and The Hemispherectomy Foundation.

Good Night and God Bless,

Cris
Google

Ranger's Game Tonight

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We had a special day today. We were invited out to watch our Texas Rangers take-on the Boston Red Sox. Our friends, Jamie and Melanie Adams (who were also co-chairs for the Pickin' for Premies" event on Labor Day) invited us out to their suite at the ballpark in Arlington to share a fun day of baseball and meeting some really neat and fun people.

The Rangers lost to the Red Sox, but after what happen to Tom Brady today, well I guess the New Englanders needed some good fortune.

To be perfectly honest, I didn't see much of the game, as I was mesmerized by all of Jamie's cool sports memorabilia and talking to the people who were there watching the game.

About the 4th inning, the Rangers TV people came by and interviewed us, so if you were watching the game, you saw Jessie and the family on TV. It was nice to tell everyone, how much we appreciated the Rangers organization, and about Saltalamachia and Wilson visiting Jessie when she was out in Baltimore for surgery. The Rangers are a top-notch organization, and Jamie, Melanie and Family are Top-Notch people. They work for many charities, and are real, compassionate, down-to-earth, caring people. Next time you see Jamie and Melanie out at the Aledo Atletic Youth Baseball Fields, or around Aledo, or Fort Worth, take some time to get to know them.

Here's the kids taking over Jamie's office. In one corner of the office, he has a signed guitar from George Strait, a picture of his family on Air-Force Once, and autographed picture of Tom Landry and Roger Staubach. Not once did he tell the kids "Be careful, don't touch that."

Here's Matt and I watching the game. The balcony overlooks center field, or you can watch the game indoors in the A/C.

Here's the family (Kristi's taking the picture) with country star Sonny Burgess. He was a guest of the Adam's today too, and a really nice guy who I enjoyed talking to. He was also one of the country stars who played the Pickin' for Preemies event last week. Super guy with a great heart. Check out his music at http://www.sonnyburgess.com/

If you get a chance, read about Jamie and his family in the August 2008 issue of Fort Worth Magazine. http://www.fwtexas.com/ . Get a chance to know one of Aledo's good characters.

Have a great week next week, and God Bless,

Cris

Brag Sheet - Look What Jessie Can Do !!!

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Jessie has been working really hard for the past few weeks in Physical Therapy, and we wanted to show off the really cool things that she can do !! These do not seem like a big deal on first inspection, but remember that just 2 1/2 months ago, she was COMPLETELY hemiplegic (she couldn't move ANYTHING on her left side)

This is Jessie catching a ball. She is beginning to use her left arm to help catch a ball. Isn't that cool ! The left side of her brain is starting to learn how to move her left arm to do things like this.

This next video is important, because kids play on the floor. To be a kid, you have to be able to get down on the floor. Jessie has only been able to do this for about 2 weeks.

2 weeks ago, she would have fallen flat on her face. This is progress, because now she can get on the floor at school and criss-cross applesauce and listen to the teacher like the rest of the kids. Play games on the mat, and walk around on all floors and play games like "pretend your a doggy". Which is the next video.

She is actually putting some weight on her left hand here, and bending at the wrist. All again controlled by the left-hand side of the brain. Listen to her say "This is boring!" :-)

OK, this last one is my favorite, because once you get down on the floor, you HAVE to be able to get back up, and sometimes there is nothing around to pull-up on. She has only been able to do this for a couple of days.

Being able to get down on the floor, and get back up again is part of being a kid....this is huge!!!! Next to learning how to walk, in my opinion, this is the next most important step in rehab.

Praise to God for each and everything that Jessie learns to do!! Thanks to Him for all the wonderful medical people and rehab people that help Jessie move forward!

Cris

2008 Pickin' for Preemies at Billy Bob's Texas with Charlie Pride

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Today's blog isn't about Jessie, but about Jake and Josh, two of her older brothers. Jake and Josh are twins and will turn 9 in December. They were born 10 weeks (or almost 2 1/2 months premature and both weighed right at 3 lbs. They weren't much bigger than a rat when they were born, and kinda resembled one. We'll, they're OK now, but we attended an outstanding event tonight that took our focus off Jessie and helped us to remember Jake and Josh and what they went through...and made them feel special. The spotlight was on them tonight.

Here is what they looked like in the NICU (Neonatal Intensive Care Unit).

This is Jake. He was in better shape than Josh, but required caffeine shots to keep his heart pumping. At one point, day one, the nurse ask me to put my hand in the incubator and massage his chest while she went and got more caffeine. Talk about getting a quick relationship with God...


This is Josh. He had the same stuff as Jake, only Josh couldn't breath on his own. Neither had full lung function, but Josh required a ventilator to breath for him. Kristi and I didn't think that Josh was going to make it. He did.

So, fast-forward almost 9 years. Here they are tonight at the 3rd Annual Pickin' for Preemies acoustic jam to benefit the D/FW March of Dimes (Pre-mature babies). Of course they're not happy, because we wouldn't let them play video games on the way in to Billy Bobs. Oh, did I tell you there fine now...just normal, well mannered, straight A student, athletes, that are just like every other ungrateful little 3rd grade boy. Do they have ANY idea what they put us through??? The little turkeys !! Oh well, we love them.

This is the "Why didn't I get to play video games" look.

"Matt and Jessie...You aren't helping !"

The Pickin' for Preemies event was GREAT, and we felt honored to be there. Our friends Jamie and Melanie Adams were the Chairs this year, and they did a SPECTACULAR job! Way to Go Melanie and Jamie!!! Their son Jared was premature as well.

The entertainment was all popular country acts from around the US, and one fella from Canada who held his own. The Entertainment included :

Charlie Pride - Yes, THE Charlie Pride, Stoney Larue, Randy Rogers, Wade Bowen, Brandon Jenkins, Sonny Burgess, Corg Lund, Jamie Richards, Cory Morrow, Roger Creager, Brandon Rhyder, Blue Edmonsdson, Bart Crow, Bobby Duncan, Casey Donahew, and Josh Abbot. The event was hosted by local country radio personality Justin Frazell, who also had two premature daughters.

We saw lots of Aledo folks there, including Marcus and Shannon Gleaton, and Tracy Tomlin, and Jay Stringer (who did all the printing for the event). We met the Fambrough's and lots of other Aledo people out to show their support for The March of Dimes.

Kristi talked to Charlie Pride's daughter...well, she asked her "Have you seen my Dad?" and Jake and Josh got to hang out on stage some. It was a great time for a great cause. We can't wait until next year.

Here are a few more pictures:

The man, himself, Charlie Pride.

A few of the boys up there having a good time and playin' some good music.

The twins trying to sneak some camera time on stage.

You turn your back for one minute, and THEY become the entertainment!!

God Bless all the committee members, volunteers, entertainers, donors, sponsors, and attendees. This is a great cause, and we felt blessed to be in attendance.

Cris

http://www.hemifoundation.org

On Sunday, we had a special invitation to go to a church service in Azle to help welcome a little boy named Logan home from Detroit, where he underwent a right hemispherectomy. (Just like Jessie). Logan and his mom, Mary, go to The Abby Church in Azle, and we were welcomed and felt blessed to be there.

Logan, had a stroke when he was only 2 weeks old, and has been living with constant seizures since then. After surgery, he is now seizure free.

We had quite a representation from the Hemispherectomy Foundation. Kristi, myself, Caren Jennings, and Laura Rasnick. In addition, we had our kids in attendance.

It was such a special day, as we had two miracle kids together to worship and thank God for the blessings that He has bestowed upon our families. It was touching to hear Mary and her friends as they explained their journey and how similar it was to ours and Jessie's. Everyone was very thankful for what the Hemispherectomy Foundation had done for them, and we were thankful to be a part of Logan and Mary's life.

Carn and Laura are going to help the church with fund raising ideas for Mary and Logan to help with the mountain of doctors bills that they encountered in their hemispherectomy journey to Detroit this summer.

This is Mary Sylva, with Kristi and I.

Logan and Jessie with matching scars.

Logan loves horses.

Jessie and Logan

Rid'em Cowboy Logan.

What a special Day!

Cris