The Link!

So, after some fruitless searching, I finally found the show Extreme Makeover Home Edition of Camp Barnabas! It's on utube, look under
Extreme Makeover Home Edition - Teas 1 of 10
And watch all 10, they're each about 8 minutes long, and it's incredible. You'd have to be a cold, miserable person not to be touched by this show, camp, family, and experience! For our Utah Special Needs Friends, you have to get your kids out here for this!!
We're grateful for the experience, and so thrilled that Monte was able to benefit from some generous sponsors to make it a reality. We know he's having a blast, the pool, zipline, horses, and singing will make him never want to come home. His counseler is amazing, I was quite impressed with him, great attitude, enthusiasm, and sweet spirit. By the time we had visited with the 2 staff doctors and Monte's nurse, he had Monte settled in, unpacked, walking around the cabin, and clothes laid out for the first party. I was worried to mention Monte's early morning wake-ups...but shocked at his immediate response. I said, "Hey, so sorry to let you know this, but Monte likes to wake between 4 and 6am." Without a single hesitation he said, "I can do that!" He also mentioned he was worried about Monte being too hot, and said that they would give him water sips every 15 minutes, and have cold washcloths for his neck to keep him cool. Wow.
We had heard a lot of raving from other parents, but I was still not too thrilled about letting Monte go until I met a teenager, a lot like Monte. He was able to talk, slowly, and with short words, and was really cute. I saw him at Dream Night at the Zoo in a Camp Barnabas T-shirt with his parents, and asked him about the camp. He said he loved it, and couldn't wait to go back. He said his favorite part was (gulp!) shooting the guns. His parents told me that the first year they were all pretty hesitant, but when they went back to pick him up he told them to go away until the summer was over! If they could've, they would've re-enrolled him for the next week. He was really upset about having to leave. Ok, that made me feel a lot better about things. However, as we drove to the camp, we were greeted about every 100 feet by more excited volunteers, including the owner and founder of the camp, Paul Teas (the man I was so, um, not polite to!). They quickly took in the somber mood of the car...I'm crying, Doug's being overly enthusiastic to not upset Monte, Monte senses something's up, and Piper's running a fever of 103 and NOT excited about anything; and asked if it was our first year. Yup. Apparently they only see that in first years. Everyone else was so excited. Still, we could hear the roar of the volunteers a mile away. They are an incredible group of people, else I never would've been able to leave him there.
This is a smaller week, it's called "Champions." It's for kids with Multiple Disabilities and or developmental delays. It's still 140 kids (!!) and each has a personal volunteer who is always with them. They sleep on the top bunk, the kids are on the bottom. There's also two house Moms in the cabin. We saw license places from Colorado, New York, Kansas, Arkansas, Illinois...We felt pretty lucky that we are so close to the camp. (It's about 80 minutes away).
Any, more updates and pictures when I get them.

Camp Barnabas

Last night we were able to take Monte to spend a week at Camp Barnabas. More on that later.
We first saw this camp years ago on Extreme Makeover, Home Edition, loved the show and the idea, but never dreamed that we would get involved. Last summer we met the founder of the camp at an activity...and I asked all kinds of obnoxious questions after seeing his T-shirt, not knowing he was the owner! He answered them all very graciously, met Monte, and was so thrilled to meet us and talk about his camp. It wasn't until he gave me his card at the end of the long conversation that I learned of his position. Oops. I'm still looking for a link to the actual show, if anyone finds it, let me know! I'd like to see it again...
Here's the text from a news article on the camp, for those of you who have never heard of it:

About Camp Barnabas
What: Camp Barnabas is a nondenominational summer camp for children with special needs, as well as their siblings.
When: Founded by Paul and Cyndy Teas, the camp opened in 1996.
Where: The camp is located on 83 acres near Purdy in rural Barry County.
Who: Each summer, more than 1,000 campers attend Camp Barnabas. The camp serves children with developmental and physical disabilities, post-traumatic burns, blood disorders and oncology, visual and hearing impairments and general medical disabilities. It also serves adults with developmental disabilities. Campers are between ages 7 and 17, except for Adult Friends Week for ages 18 and older. The camp also is available for retreats mid-August through late April.


'Makeover' takes Camp Barnabas by surprise
Founders of camp for disabled children will receive new house within a week.
PURDY — Secrets don't stay secret very long in a small town, and there had been rumblings that something big was coming to Purdy.
It was, and it did.
The ABC show "Extreme Makeover: Home Edition" hit this small Barry County community Wednesday, surprising Cyndy and Paul Teas with the "door knock" — the moment that kicks off a weeklong circus of activity.
This makeover, however, is a little different.
The Teases are founders of Camp Barnabas, a nondenominational Christian camp for children with special needs, that's in its 10th summer.
The Teases' on-site home — the one with inadequate heat, no central air conditioning and a patched kitchen ceiling where part of the bathroom fell through — will be razed and replaced by something new.
The door knock, usually done with only host Ty Pennington and members of the design team present, this time featured all of the campers looking on, said Ed Sanders, a carpenter and design team member.
"It was like one big family door knock. That was the right thing to do. ... The door knock today was special. You saw the love when (the Teases) came out," Sanders said.
"Extreme Makeover: Home Edition" airs Sundays, and this episode is scheduled for fall.
Sanders, a native of London who has an acting background and took carpentry classes for a back-up skill (at the prodding of his father), could barely contain his excitement over Camp Barnabas and its campers.
"There's no disability at the end of the day," said the affable Sanders. "They're just kids. ... I'm just so happy to be here."
The Teas family — including son Trace, 21, and daughter Kayman, 22 — were aware they were in the running for a makeover, said Sandy Smith, Cyndy Teas' identical twin sister.
A cousin of the sisters had originally suggested nominating the Teases, but no one followed through. Then Cyndy's niece visited the camp last year and declared the Teases' home in need of an extreme makeover, Smith said.
The long nomination form and a video was sent in last summer, and the Teases were notified around February that ABC was interested, Smith said. Months went by."They always told them they were up against other people. Then they called three weeks ago and said it's been narrowed to five families. So it's been pins and needles since then."Smith was hopeful the "Extreme Makeover" team would show but didn't know for sure that they had appeared until she saw them wandering around.
Each design team member gathered campers — a group selected to mark the camp's 10th year just in case TV came knocking — and everyone assembled in front of the house.
"(Paul and Cyndy) were in the back of the house, where they couldn't see a thing," Smith said. As an identical twin, she said she felt Cyndy's nervousness.
Then the front door opened, and the Teases were faced with a crowd of campers and TV people.
"I was real close to the house," Smith said, "and I just zeroed in on my sister. She was like, 'They're here! They're here!'"
But the truth about the Teases, Smith said, is that they don't care about getting a new house.
Their goal is to get the word out about Camp Barnabas, a place where special-needs children can experience a rite of childhood like everybody else.
"I'm going to start crying," Smith said. "I just don't think she's ever understood what she's done for the world. Her husband and her children have given up so much."
That's true, said Rob Merrill. The Kansas City businessman has known the Teases for more than a decade. His daughter, 20-year-old Kirby, has attended Camp Barnabas all of its 10 years.
"They're much more interested in what story is going to be told than in what's going to be done," said Merrill, who is a partner in Route 66 Network, which helps supply RVs to the set, which is not open to the public.
The grounds of Camp Barnabas have always housed youngsters during the summer since the 1930s when Camp Sylvania was an all-girls camp, said Jane Head. She and husband Henry built the Teases' house in 1976 and were on hand for the door knock.
In the 1940s, the property was bought by a church; the Heads acquired it in 1972 and started Camp Soaring Hall.They lived in the house until 1991 and have known the Teas family for a while."It's about time for it to come down. ... We didn't realize how bad a shape it was (in)," said Jane Head, who had heard rumors about the TV show that were confirmed at her bridge club Tuesday.
Isaac Edwards, camp chaplain, was one of the few people who knew for sure that "Extreme Makeover" would show up — so he could organize the children.
"They deserve to have 'Extreme Makeover' tell their story," he said of the campers. "When I saw the campers, I thought, it'll be great to see these kids on TV."
At midday, only a few large construction vehicles were lined up at the front of the property. Five hours later, utility lines had been laid, dump trucks had arrived and construction workers were every where.
Time is tight. The finished house will be revealed Wednesday after the Teases return from the trip that families go on during production.
Crew, workers and design team members go nonstop, said Sanders, who has one room in the house that he wants all the campers to help with.
The team doesn't know whose house it's going to until it's on its way — in case loose lips inadvertently spoil the surprise, Sanders said.
And the designers don't watch the family's video until they are on the bus and headed toward the location.
"This is by far the hardest job I've ever had to do in my life. ...," Sanders said. "It's the only show that tears your heart out at the beginning of the week and then puts it back in at the end. ...
"You're changing people's lives."

And another one:
They wept.
And that was before the show even aired.
ABC's "Extreme Makeover: Home Edition" aired a two-hour special Sunday night revealing the transformed Camp Barnabas to the public for the first time.
About 250 people gathered in the mess hall of the Barry County camp to watch the event at 6 p.m, erupting in laughter, wiping away tears, cheering and offering a standing ovation — Camp Barnabas style.
The nondenominational Christian camp for children with special needs was founded 10 years ago by Cyndy and Paul Teas.
Since some of the children are unable to stand, the "standing ovation" has been transformed by children holding their arms above their head making an O.
When the show ended at 8 p.m., the crowd cheered and made the sign O.
It was an emotional night.
"The words seem inadequate," said Cyndy Teas as she choked up while trying to thank those in the audience who were involved in the project. "... I need my tissues already. I am just a disaster."
The Teases sank their life savings into the camp. Over the years, the camp has expanded, but their home on the site was in need of serious help.
When you look at the amount of repairs the house needs and how many tuitions that would provide, the kids win out, Paul Teas said on the show.
That theme echoed throughout the night.
It's obvious the Teases put the kids first, said Heno Head, who has written a book about Camp Barnabas. Head's parents owned it when it was Camp Soaring Hawk.
The camp went to good hands, Head said.
The Teases were hoping for a new home — the old one had a crack in the foundation, mold, decay and a hole in the kitchen ceiling.
They got much more than that.
The extreme makeover included a new home for them, a media center for campers, two new Ford Explorers and the Barnabunk, a new building with 80 bunk beds.
It won't end there.
The Teases would like to revamp all their cabins, 21 of them, at a cost of $100,000 each, said Paul Teas. The future will be focused on making those dreams come true. The camp launched a capital campaign Sunday night. Forty minutes after the show ended Sunday, online donations reached $3,900.TV Guide, which features Camp Barnabas in its current issue, is pledging 10 percent of the profits from that issue to the camp — a minimum of $50,000. The phones rang off the hook after the show, with people calling in donations and inquiries.
THE MAKEOVER
It took 4,500 volunteers and more than 70,000 man-hours to make this dream come true, said Steve Butcher, president of PB2, the Arkansas firm that oversaw the project.
One result was a media room, dubbed The Silver Lining, because it's a haven for kids on rainy days with its massive plasma television. Orange, lime green and yellow circular chairs surround giant beanbags in the center of the room.
The entrance to the Barnabunk, which will sleep 80, is graced with children's painting. A suede-feel black oversized couch faces a matching couch in Christmas red.
But the piece de resistance was the house.
On the show, when the home was revealed, Paul Teas and the entire family wept, hugging.
Daughter Kayman, 22, couldn't believe the kitchen.
"Three ovens," she yelled on the show. "Mom, you have three ovens. One, two, three."
There was also a stone fireplace, a wood stove, pine moldings and pine ceilings.
Kayman's room was transformed into a tropical paradise with a thatched roof, palm tree and beach scene painted on the wall.
But what touched the family most was the "The Big Tree of Life," a branched structure in the home with wood cutouts of the camp children's hands.
REACTIONS
"It's weird," said Paul Teas during a commercial Sunday night. "It's like you're reliving the emotions, but watching yourself. So you are somewhat removed, but the emotions... Emotionally, it was an amazing time."
It's like a homecoming, said John Branham, president of Branco Enterprises, which offered a slew of volunteers and excavation services for the project.
"It's not that long ago. It's a flood of memories," he said.
His favorite memory was Monday night on the job.
Construction workers were eating just outside the mess hall, simply exhausted.
The camp kids wrapped around the deck and began to sing.

"They were singing, 'We love the workers. We love the workers.' Then they put their hands on the heads like an O," Branham said. "If you ever want to see 300 construction workers tear up, that was the time to do it."
Melissa DiPiano was giddy.
She first came to Camp Barnabas in 1998, when she was 10 years old. DiPiano brought her 9-year-old sister, who suffered traumatic brain injury from a car accident when she was 6.
DiPiano was first a camper, then a volunteer and now the 18-year-old Missouri State University student is a counselor.
More than 7,000 kids have summered at Camp Barnabas.
"It's changed a lot," DiPiano said. "I was really excited, but I was also nervous. What are they doing to do to camp? They are going to take away camp as I know it."
The camp has done so much for her, she said, and she's excited about its possibilities.
The extreme makeover show was filmed the week of Aug. 19. The family and campers had a sneak preview of the revamped camp, but it was not unveiled to the public until Sunday.
Thousands of volunteers worked literally 24 hours a day.
"You have to," said Branham. "Absolutely."
During a pre-show party, Paul Teas said he insisted the donors and volunteers come back next summer to see what a difference they have made in these children's lives.
"You are all part of the Camp Barnabas family," he said. "The extreme makeover show was filmed the week of Aug. 19. The family and campers had a sneak preview of the revamped camp, but it was not unveiled to the public until Sunday.
Thousands of volunteers worked literally 24 hours a day.

Ok, one more. Sorry!

PURDY — As more than 2,000 people worked on an "Extreme Makeover" at Camp Barnabas, 70 campers went swimming, skateboarded and generally had a great time during the last week of camp. Half of the Christian camp for kids with disabilities is swarming with workers and spectators who are watching the ABC show "Extreme Makeover Home Edition" build Camp Barnabas founders Paul and Cyndy Teas a new home, and build the camp staff housing and a media center.
The other half represents what all the excitement is really about — a place where kids can have a great time, no matter what their disability, and come away convinced that they are able and valuable.
"For 51 weeks a year, these kids get the message that they can't do things and they aren't important," said Dr. Terry Winkler, chairman of the camp's board of directors. "For one week they get the message, you can do this and you are important."
Being with other kids who also have disabilities and seeing staff and volunteers with disabilities is a powerful message to the campers.
Winkler, a physician in Springfield, has seen it firsthand. He volunteers at the camp's medical unit. When the campers see him arrive in his wheelchair, "we see the light bulbs go off," he said. Some kids express surprise that someone in a wheelchair could be a doctor.
"It's a very powerful tool," said Winkler.
BEING ACCEPTED
Teri Strickland has been attending Camp Barnabas since she was 10 years old. The 18-year-old from Oklahoma City has been a volunteer at the camp for the past four years.
During this week of camp, Strickland is working in the sibling cabin, where the brothers and sisters of disabled kids can join in the fun. "And for one week they don't have to worry about their brother or sister," she said.
Strickland's job is "to be their best friend."
She knows how important it is to be in a place where everyone is accepted as "normal." Strickland is a "little person." She and her sister were both born with dwarfism.
She had been to other camps with special programs for disabled kids, but when she got to Camp Barnabas it was "two times, five times, 100 times better."
Because the 123-acre camp is geared solely for kids and adults with every conceivable disability, there is no need to make special provisions for anyone.
"We're one big happy family," said Strickland. "You don't have to worry about being accepted."
Pete Herschend of Branson, who has served on the Camp Barnabas board since the camp began 10 years ago, recalled a week at camp when all the kids had cancer.
"All the kids there know they have cancer," he said. "Cancer is the norm. If you're cancer-free, you're the one who's the oddball.
LIFE-CHANGING
Being accepted is only one part of the wonder of Camp Barnabas. Campers are challenged and congratulated, loved and supported.
Sitting in a wheelchair, Randall Sneed wasn't feeling very good about the life he was given after an accident left him paralyzed from the chest down three years ago. This year, Sneed attended the camp's young adult session for the first time.
"It brought me back where I needed to be," said Sneed, 25. "It made me appreciate this life I'm evidently supposed to have."
Sneed attended week six, then came back for week seven as a volunteer, then week nine, and now week 10.
"I'll probably always be a part of the Camp Barnabas family," he said as he got ready to take a dip in the camp pool. "It's given me a purpose."
Sneed's mother, Gayle Steinert of Billings, saw her son's life change after one week at Camp Barnabas. She had watched him go through depression and frustration, and now she sees him excited about life.
After climbing the 50-foot rock wall without any help, he called home to make the announcement.
"He's felt normal because he's with people who have the same struggles," said Steinert. "I just pray he can take this home and apply it to his life now."
Cathy Cox, whose daughter, Minda, 16, is at Camp Barnabas for the second year, said the camp has affected Minda in many ways. Not only has it given Minda, who was born without arms or legs, a place where she is welcome, where she has peers for friends and role models; it has provided her a place where she can express her faith.
"For Minda, the absolutely best thing is having other 16- to 19-year-old girls who are also Christians, who are in some way disabled, who don't think that somehow means that God is unhappy with them," said Cox, of Dunnegan.
"Minda loves having people take seriously her faith," she said. "God is the source of her identity."
Strickland also appreciates being able to discuss God and her disability in the same conversation. "We talk about God," she said. "We talk about how does this have to do with God."
CHRISTIAN CONTEXT
Faith is at the heart of Camp Barnabas. It brought Paul and Cyndy Teas to the Ozarks from Texas, said Heno Head Jr., author of "Camp Barnabas: Champion for the Challenged," the story of the Teases and the camp.
The book tells the story of how the Teases' own faith led them to start a camp just for kids with cancer, then expand it to welcome all kids with illnesses or disabilities.
Naming the camp was an early challenge. The Teases wanted to name it Camp Courage, Head said. But the name was already taken. One of their children suggested naming it for Barnabas, a follower of Jesus Christ who traveled with St. Paul. Barnabas is always in the background, helping and encouraging people, daughter Kayman explained.
When they first started, the Teases found other camps that focused on kids with disabilities and illnesses, but none did it in a Christian context, Head said. "They were doing great things for kids, but not with a Christian message."
That message is not just for the campers. It is also for the hundreds of volunteer CIAs — Christians in Action — who come back every summer to spend a week or more.
Brett Haynes of Kansas City came to Camp Barnabas when he was 16 years old with a church group.
"Every year, I've come back," said Haynes, 22 and a nursing student at the University of Kansas Medical School.
His work at Camp Barnabas not only introduced him to a career in nursing, it showed him how to live out his faith. "It is a deep, real connection to how Jesus loves us," he said
That connection will bring him back to Camp Barnabas "as long as my life permits me to," said Haynes.
BIG PLANS
The work "Extreme Makeover" is doing at Camp Barnabas will give the Teases a new home. It will also give the camp a leg up on its plans for the future.
Granville Watson of Bolivar, head of development for the camp, said one of the first things planned is to build 21 much-needed new cabins to replace the 18 1930s era cabins now being used.
The new cabins would provide indoor plumbing and would allow the number of campers per session to go up from a maximum of 120 to 150. With nine regular camp sessions, that means potentially 270 new campers.
The camp also needs a water treatment system, although "Extreme Makeover" is providing water and sewer lines.
Once that's done, work will start on an activities and wellness center that will usher in a complete wellness program to help campers understand their physical needs and how to care for themselves.
Then they will build a nature center, a visitor center, an equestrian center, and a $4 million endowment, said Watson.
All that sounds like a lot of work and a lot of money — $8 million total — but each step is a step of faith.
And each dollar or donation of time is a faith investment that pays big dividends, said Winkler.
"You cannot outgive Camp Barnabas," he said. "It does so much to your heart."

The Who is being more rude?? Poll

So we came across these bumper stickers in a store in Branson, and just had to have them (I know, I know, I take terrible pictures, sorry).

Here's the question. Is it terrible to put the pink one on Monte's chair? I do think it's pretty funny, but we do try to be good ambassadors as special need kid parents...

Also, we are so tempted to photocopy the parking one and then leave it under windshield wipers throughout our days...

It's the worst at school, especially when it's raining. There are 6 designated drop off zones for other parents to use, but each of them have stairs, so we can't use them. There are then 3 handicapped spots in front of the school, and at least 5 parents who have to use them. So many times when we come, they're all taken, by parents of kids who are fully capable of walking up the steps. They park and walk in with them...and fill the spot for a long time. The other regular spots are usually full from the teachers and administrators. I've tried to tell a few parents how rude it is, usually nicely, sometimes warning them of the 100$ ticket they can get for parking there, and you wouldn't believe the belligerence I get. It's downright despicable. Just a note: I have to unload the wheelchair, walker, backpack, lunch cooler, Monte, and Piper, then carry it all in without any help. So it's not that I'm lazy, I just really need to park close!!

Just thought a little background info would help explain our attitude!

What do YOU think? We're curious what your attitude on it is. Do it or refrain?

Also, anyone want us to mail you your own?

To Two of my Wonderful Friends: (and the rest of our fantastic support system!)

I started to post this comment, then decided to share it, Heidi and Tiffany's comments really touched me:
You two really overwhelm me, in a great way! You both have more than your fair share of trials right now, I can't believe you have time to worry about mine. Thanks for the love and support!! Tiffany, a body cast AGAIN? Was it the same hip as before? How big is she now? That must make lifting her nearly impossible. And heel cords also? Let me know how she's doing with all that, we're lucky Monte hasn't had to do any of that. We'll keep you in our prayers also. I wish I was there to take you out to a movie again, of course that did backfire on us last time. We accidentally picked "Finding Neverland," then sobbed through it. So much for cheering you up! He's on Keppra right now, they'll probably add Lamictal later if these seizures keep breaking through.
Heidi, that really does make us feel a bit not so alone out here, we drive through Fort Leonard all the time, it has the nicest McDonalds with the cleanest restroom and best Redbox. What does your sister do out here? We'll have to coordinate sometime? We love your family, they never fail to help us feel loved and cared for, even though they hardly get to spend time with us! Wow, Aunt Arva is wonderful, we'll keep that in mind next time... :)
I love that both your dad and his friend both put Monte's name in the temple. It is sometimes a very tangible feeling when we have our names in the temple, I can almost feel a strengthening and lifting of our spirits. Plus on Sunday I was playing hymns during family prayer and Monte just started laughing and laughing...I'm not sure what he was seeing or feeling, but I know that he is not always simply with mere mortals on this earth.
I did come home a bit sad and overwhelmed last week, I appreciate all of you posting comments, sending texts, and checking in on us. It's hard when you can't "fix" your child's health problems, and no one else can either. We usually keep in good spirits, I'm not sure why last week was so much harder for me emotionally...but it was. What I'm trying to say is, thanks for letting me be honest about my feelings and not have to pretend that everything is ok, just this once.

He had two seizures more on Sunday morning, I kept him home from Church *just in case*, and it's good that I did. Of course, that is now two weeks in a row that I've missed church, and isn't that weird and terrible feeling? You'll have to share all of your vast spiritual knowledge and catch me up. We did have the missionaries over for dinner (they didn't know, and I felt bad standing them up), and they helped fill that void, of course, we also talked a lot about false doctrine also, so that was funny.
Enough rambling!

Hesitant

We came home Wednesday evening, blessed with a comfort meal provided by one of our good friends here in Branson. Doug had to work, so I fed the kids and we call crashed in my bed. You know you're tired when the pre-packaged, pre-prepared Caesar Salad bag looks like too much work. I skipped it, then ate it for lunch the next day. Very delicious, very comforting. We had a calm couple days of catching up on life...then Monte started having small tonic clonic and focal seizures last night. He had 4, then the emergency medication kicked in. He and I stayed home from church so I could keep it quiet and calm for him...and he had two more. Not sure how to help now, will call Dr.'s in the morning. (On-call doctor's usually just increase medication).
Hanging in there, worried about Monte and pretty tired...

Today:

He's doing so much better, it's our first full night without seizures. He's wanting to eat, play with toys, and tried to get off the bed once. So thrilled!
Neurosurgery wants to leave his shunt as is, but have us check back next week to remove stitches and probably change the setting on the programmable shunt. This entails holding a impressively powerful magnet over his head and changing it. It's amazing that they can now do that without surgery. He is overdraining, but it's better to leave things as they are, treat the seizures, then discuss changing it later.
Neurology is changing his dosage of one med, watching him for awhile, then maybe adding another med in a few weeks, depending on how he's doing. We follow up soon with and EEG and apts. They're not doing an EEG now, he's had a lot of them in the past, and the Dr. is really familiar with his brain...she things it will not provide more info that would change her plan. Thanks though Becky, that was my first instinct too! I'd love to "meet" your sister, we love PICU and ICU nurses, they're amazing people.
Heidi, let me know what you dad says..
We should be going home sometime today. I'm taking volunteers to sit up all night, staring at Monte, making sure he's not going to have another seizure without me knowing about it...
I don't know how we're going to go through nights now...
Can't talk about it...

Update

Monte went into surgery Monday at 5pm to place a bolt in his brain to measure his ICP Intercranial pressure. It came back surprisingly low...which means for now no shunt surgery. He's now hooked up to a monitor that reads the bolt through fiber optic cords hooked up to a computer. He came out of surgery into the PICU, where they monitor him constantly. It was -8 most of the night. Odd, since last time it was 25. Normal is like 5-10... He also had a small seizure last night. The current plan is to monitor him like this for 48 hours. However, it really surprised all of us. We're waiting to see Neurosurgery again to discuss the low pressure, the shunt seems to be overdraining, causing pain and possibly seizures??? So we're still waiting...
He did wake up a bit more today, finally, and felt like nibbling at food a bit. I'm encouraged, just tired and frustrated a bit too. He also used 3 signs, also good. But isn't able to suck out of a straw. It took almost 6 weeks to recover from the last big seizure in february. We're thinking positive thoughts...
And watching a ton of Disney channel, it seems to calm him to hear the music, also a good sign. Thanks for all the posts, I really appreciated them and feel your support.
Tiffany, what's going on with Katheryn? I do wish we were at the same hospital, we're incredibly lonely. I did get my cell phone charger, so you can text me again, but it's not technically allowed in the PICU, so I have to keep it silent and not take calls. Doug and Piper just arrived, I'm taking her out of the hospital for a brief respite together while Doug and Monte spend time together, then they're leaving about 7 tonight again.
Allyson, will you keep Grandma T posted?
Love you all!

Update

Monte went into surgery to place a bolt in his brain to measure his ICP Intercranial pressure. It came back surprisingly low...which means for now no shunt surgery.

The Latest

On Saturday night/sunday morning, Monte started a seizure that lasted at least one hour, possibly a lot longer. We administered 2 meds, then the paramedics gave another. Monte and I rode the ambulance to Skaggs hospital, then a helicopter to Cox. Then the seizure stopped, but he required oxygen most of the day. We were then transferred to St. Louis Children's via ambulance (the weather grounded the helicopters). We've been here since Sunday afternoon. Yesterday he had two tonic clonic seizures (grand mal for those stuck in the 80's), one on the x-ray table. He stayed lethargic and unresponsive most of the day/night. Last night he began having a series of focal seizures (again, petit mal for those without medical education!) every 35 minutes or so. He had 11, then received another medication that seemed to have stopped them. Right now we are waiting for neurology and neurosurgery to determine the best course. Neurology is inclined to keep increasing medication...a decision I fight. We want him to need the minimum meds required, to keep cognitive and physical function. He's already at a high dose...If this is a shunt malfunction, that is causing the seizures, increasing meds will just mask symptoms that will diminish as the pressure on the brain is decreased. But to complicate things, the CT shows decreased ventricles. (Some of you might remember this happened in February, the Dr.'s were convinced the shunt was fine, then did an ICP surgery, placing a bolt in his brain to measure pressure. Normal is 10-15, he was at 25!!!)
We never want to rush into surgery, so I understand the need to make a clear decision. He has had 28 shunt revisions though, his body doesn't seem to accept them and wants to shut them down and destroy them.
However, it is hard being in limbo, seeing him so lethargic and obviously suffering and being unable to make plans. He's even leaving his IV alone, he hasn't tried to pull it out of his hand at all. This is a good thing, as it took 10 pokes, two life flight teams, and finally they pulled a chief anesthesioligist out of a heart and liver transplant to place an IV. Boy was that humbling!
He's bruised all over, dehydrated and miserable, but doesn't even seem to know it.
Please excuse my dramatics, it's been a long few days...but if I may ask a favor, we strongly believe in the power of prayer. We know that it truly does sustain us and help Monte feel comfort in this environment. Please pray for an obvious knowledge of Monte's needs, so that if it is the shunt, it will be revealed so that we can move forward, and if it is not, that he will recover quickly without needing a permanent increase in seizure medications.
Doug and Piper are staying at home for now, so Doug can work and Piper is not having to see Monte like this...it's really hard on her, as it is all of us. (Last time she started yelling at the doctors for hurting him). But everytime we talk she tells me she's ready to come pick me up.
This is hard...
Thanks for reading and caring, I will update as I can. If only I had a phone plug!!