Josh on TV again, back to school preps, Morgans Wonderland fishing & more

JOSH TO BE ON TV AGAIN



On television in the coming months, the world has a couple more chances to learn about ROHHAD, the rare disorder that nearly took Josh from us and causes him to require a ventilator and all sorts of medicines. ROHHAD stands for Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation.

Josh and his disorder were already featured in an hour long documentary, Life or Death : Battling to Breathe (see it at the bottom of this blog page) that aired on the Discovery Channel and Discovery Health a few years ago. Battling to Breathe focused on the time when Josh suddenly went into respiratory failure and doctors struggled to save him and discover what it was that caused this previously healthy boy to get so sick so quickly.

CAST OF DREAMS

If you recall, Josh was selected to go on a dream hunt near Del Rio in December 2009, thanks to TNT Outdoor Explosion and Cast of Dreams. He shot his very first deer, a big buck. He even made the front page of the Del Rio newspaper the next day.





Those working on the show contacted me last week to say they were currently editing his episode and needed some photos to help tell Josh's story. They also said they'd send me a disc when editing was complete, so we could see how it turned out. I still don't have an air date, but I'll pass that along once I do. Here is a link to the channel and schedule for TNT Outdoor Explosion's.

I just have to share a couple more pictures from Todd Cast of Cast of Dreams. Todd just got back from another hunt in Zimbabwe. He sent us a couple of pictures of his most memorable kill:






MYSTERY DIAGNOSIS

I've also been contacted by the makers of the Discovery Channel Show, Mystery Diagnosis, about telling Josh's story. They have been interested in telling the story of a ROHHAD patient for some time now. They had been in discussions with another family, but the plans with them fell through. They were still very interested in ROHHAD because it is so rare (less than 100 known cases in the world) so they found us here at VWootenWorld and left me a message. Our primary doctor who diagnosed Josh back in 2005 was happy to help tell the story with us again, so the show is pitching the story to the network. We should hear whether it is a go or not soon.

JOSH SICK

Josh started running fevers last weekend and started coughing coughing up super amounts of mucus. After 4 or 5 days of this, I made him an appointment with his pediatrician, who sent us to a clinic for some tests and prescribed Josh an antibiotic (Omnicef).
Josh at Pediatricians office

Josh and Nurse at Clinic for bloodwork, sputum culture and chest xray

Josh's chest xray


That night, Josh had one of the roughest nights since he had double pneumonia back in late January. We had to suction several times and max out all his ventilator settings to get his oxygen and carbon dioxide levels near normal levels. His nurse said she nearly woke me in the night a couple of times because she didn't think his levels would normalize, but they finally did.

After a couple doses of antibiotic, plenty of rest and lots of suctioning, Josh is starting to get better. His temperature is still a little higher than we'd like, but it's coming down more often than before. We are hoping he will be back to good health by the time school starts Aug 23rd.

Getting Ready For School

We have already registered Josh for school. He starts Junior High this year. We go this next week (Aug 18th) to meet his new school nurse, pick up his class schedule and books that he'll keep at home. He is very excited about it.

And for the first time since before Josh was born, I am going back to school this year, too. It has taken far more time and effort than I ever dreamed it would, but I got all registered for my pre-requisite classes.

Grants will pay for my tuition and fees. We scraped together the money to buy my books (I found them on Craigslist and I'll try to sell them to someone else after the classes are over). But I will still need to work as much as I can so we can afford the gas money to get me back and forth to classes. I have classes 3 nights a week at a facility about 30 minutes away.

Once all my pre-requisites are finished, I'm hoping I'll be accepted into the Respiratory Care Program at St. Philips College. Its a 2 year program. But since I already know so much about working Josh's ventilators, suction machine, and monitors, I figure it would be a natural fit for me.











Thinking of taking house off market

Since we will be so busy with work and school starting up again, we have decided we will take our house off the market if we recieve no bid for it in the next couple of days. We've had the house up for sale for the last year and a half, with no bites, so I've had enough with trying to keep the house show-ready. I really don't want to have to worry about that with working and going to school.

Morgan's Wonderland Fun

Last weekend, James got the opportunity to participate with a buddy in a red fishing tournament. He had a lot of fun even though they didn't really catch any award winning fish. While he was away, Josh and I decided we wanted to do a little fishing of our own - but at a place much closer to home - and with a bit more to do than just fishing. We went to Morgan's Wonderland.

Morgan's Wonderland is an amusement park created with special needs folks in mind. It's the only one of its kind in the world. Below are some pictures of us enjoying ourselves. Oh, and my sister, Amanda and her boyfriend, Nick came along with us.





















SOFTBALL

For years, Josh has been waiting patiently to get back into some kind of sport. He loved T-Ball and coach pitch baseball back before his respiratory failure. Since then, he's been forced to sit on the sidelines mostly because he's connected to a ventilator and riddled with hydration and temperature problems. While those problems are still present, at least now he has pacemakers to free him from the ventilator most of the time while he's awake. So, we've agreed to let him try his hand at softball, playing (a little bit anyway) with our church's league. He went to his first practice last Monday. And today, he picked up his very own softball glove. Now, we just pray for the weather to cool off.

BIRTHDAY PLANS & GOODBYE TO POST OFFICE BOX

Josh's 14th birthday is coming up September 19th. His nurses, seeing first hand how his disorder affects his life, are excited to try and make his upcoming birthday party one to remember. They have shared with me that they have made a few requests for donations for party supplies and maybe a gift or two for him. I know one of his big wishes for a birthday present is his very own laptop computer. So, perhaps his birthday wish can come true - we'll have to wait and see.

And we've decided the time has come to close (and stop paying for) Josh's post office box. He has been very happy to go check his PO box often over the past 5 years. But as time passed, he was receiving fewer and fewer cards and letters. He still loved getting every one that came. But we figured it was a good time to go ahead and just have any more mailings forwarded to our home address. If you would like to send Josh a card or letter, etc., you are welcome to send it to our home. Drop me an email at JWooten116@att.net and I will share the address with you. If you would like to drop him a line on his own email account, I know he'd love that too. You can email him at: JoshuaAlanW@Yahoo.com.

Dream Hunt

What a Weekend!

Dec 11th-13th: The weekend of Joshua's Dream Hunt trip.

We left Friday morning, December 11th heading through Uvalde and into Del Rio, which is near the border with Mexico. Just northwest of Del Rio, we were directed to look for Allen Ranch Road. That is where the private property is located where we were to go deer hunting for the tv show.

We arrived around 2:30 in the afternoon. We knew we were at the right place when we saw the pickup truck parked out front. It was plastered with camouflage and TNT Outdoor Adventures logos.

I had been worried a bit about our accomodations. Would we be sleeping in a tent or a small shack, or at somebody's house on the couch? I had no idea. My husband even asked me on our way if they'd told me for us to pack sleeping bags or something. "No," I said. But I did make sure we had pillows and blankets just in case.

Little did I know the spot they had arranged for the hunt was the 16,000 acre Texas Antlers Ranch. And we'd be staying at a practically brand new lodge that resembled a log cabin. The place is BEAUTIFUL. Below are some pictures I took:




We took our stuff inside and checked out our room. It was great. We had a nice big bed and Josh had bunkbeds of his own. The windows and bedspreads were white with little deer on them. We also had a large bathroom with 2 showers and double sinks. It was stocked with toiletries and even a hair dryer.

Outside our room was the great room with a living area... which had a rock wall fireplace (kind of like our old house in Odessa had - I sure miss our old fireplace), a big kitchen and dining tables. And we would have our very own chef! She already had snacks available for us if we'd like - homemade chocolate chip cookies, fruit, and chips!

The guys had to hurry and get changed. It was time for Josh to do some practice shots with the gun they had for him to use. Then it was off to the deer blind.

There was only room in the blind for four people. Josh, his guide, the photographer and one other person could go. Josh really wanted me in there with him, but I talked him into letting his dad go - it would really make James' day to see Josh get a deer. And I could always see it later. So, Josh agreed and they set off to hunt, while I stayed back at the lodge.

James and Josh were super excited at the opportunity to go on this guided deer hunt. While they were out, they saw lots of deer and even spotted the one buck they were hoping Josh could shoot. But the deer never gave them a clear shot. So, they came back empty handed the first night. Not to worry, though. They would have a second chance Saturday morning. And for dinner.... big, juicy, thick steaks with all the fixings!

We also spent the evening taking a few more pictures of the lodge:

We awoke Saturday around 4:30AM so the guys would be ready to leave for the blind by 5:45AM. Our chef promised to get up and fix cinamon rolls for us, then a bigger sit-down breakfast for after the hunt.

Again, I hung out at the lodge and visited with the show host, Todd Cast and our chef, Donna Wimberly. I also watched a little TV, and took a nice warm shower.

After a while, as I wondered how things were going out at the blind, the ranch owner, Johnny Allen poked his head in saying they were asking for more feed out near the blind. He asked if the guys in the lodge (Todd Cast and Tommy Wimberly (Donna's husband and a manager at the ranch) if they'd like to ride along. I asked if there was room for me, too. I had not had a chance to see where this blind was and figured it would be nice to get a look. They said "sure" and we headed out.

Even though it was kind of chilly outside, it was nice in the vehicle we were riding in, so I didn't take my jacket. I figured we'd be back shortly. But I was wrong.

After we got into the field approaching the blind, but still a good ways off, we got a message from the guide telling us to stop. That usually means a deer is presenting that could be in position to shoot and we don't want to spook it. A few minutes later, we got the all-clear. So, we proceeded on. That happened a couple of times before we got to the blind. But both times we got the go-ahead to come on.

We turned the corner in front of the blind and I waved to the guys as we passed. We pulled up a ways down the road in front and released corn onto the dirt road along the way. Then, we stopped and the owner hopped out and grabbed a bag of something the guys referred to as "protein" and he ran out in front of the vehicle and poured some out. He put the half-full bag back into the back of the truck and got in, and started it. We drove away slowly and started back for the lodge.

We didn't get too far, when we got another message saying "stop." We were especially surprised because we figured we'd probably scared off any deer in the area and it would take awhile for them to come in to eat after we left. But not long afterwards we got the message that the deer was down! Josh had shot his first deer and it was down!

It was going to be a quite some time now before any of us was going back to the lodge. And in fact, we were all going to be out in the chilly air checking out that deer of Joshua's. Luckily, James lent me his jacket. He had on more layers of clothing than I did, so he was kind of hot anyway.

Well, unlike most hunts, Josh couldn't go over to his kill right away. This one was for a tv show and was being filmed. The photographer had to shoot some things several times from different directions. So, it took awhile.

We were all there when he finally did get to go over and see his deer for the first time. And yes, the camera caught his reaction. For that, you'll have to wait for the show to air (which is supposed to take a few months).

But I did get some still pictures to share:

While we were still out in the field on our way back to the lodge, the ranch owner made some phone calls. By the time we got back near the lodge and barn (where the deer would be taken to be cleaned), quite a crowd had gathered. There was a newspaper reporter, one of the men who lease part of the ranch, other hunters and several people who work the ranch.

Joshua's prize deer was unloaded and setup by the lodge, so that the name of the ranch could be seen in some more pictures. Below are some of those pictures:

Before we finished taking pictures there, the rancher's wife and children showed up with the taxidermist. They had some gifts for Josh and told us they were going to have Joshua's deer mounted for us for FREE! (We later found out that work usually costs several hundred dollars) And they would even have the mounting finished and sent to us by Christmas - which is super fast!

Soon, everyone (but me) was headed for the barn with the deer to clean it and have it officially weighed and scored. And they tell me they even smeared deer blood on Joshua's face to Christen him to the sport. Although that sounds a bit gross to me. Anyway, the blood was wiped off by the time he came back to the lodge for our very late breakfast/brunch meal.

After we ate, we got another surprise. The folks at the ranch had talked with the show crew and decided since we still had so much hunt time left, and they were feeling so generous, they would take Josh's dad - James out and let him try for a deer, too! Not much could have made James more happy that afternoon!

Before the evening hunt, even the Val Verde County Sheriff dropped by to visit Josh and give him a little gift.

Josh decided to come back to the lodge with me and rest while his dad got his shot at hunting. He busied himself watching the deer that come to feed just outside the lodge. He even took a few pictures. But after just a little while, the "limo" (a camo covered suburban) was summoned to come out and pick up the hunter, guide and tv show photographer as James had made his kill!

Everyone in the lodge jumped in for the ride this time. We were so excited to see what size deer James had got. But the sun was dropping fast, so we had to get there in a hurry! And there were so many deer all over the place, I was afraid we were going to run over one (or more) on the way!

Here's what we found when we got out to the deer blind this time:

Sunday morning, we were told we'd made the front page of the Del Rio newspaper! They said there was only one mistake in it. They had written that we are from Uvalde. (not sure why they would have thought that). We stopped at the HEB in Del Rio on our way back home and picked up a few copies of the paper so we could have a look and to share with others. Here's what was on the front page:


And here is the story inside:

Below are some links to websites for more information about the TV show, the ranch where we hunted, the taxidermist preparing Josh's and James' deer and the place where the deer meat is being processed:

The show is Cast of Dreams on TNT Outdoors Explosion.

Here is their website: http://www.tntoutdoorexplosion.com/index.php

Texas Antlers is the ranch with the great lodge where we stayed.

Here is their website: http://www.texasantlers.com/

The taxidermist mounting the deer is Carmen Cantu of RC Taxidermy Wildlife Studio in Del Rio.

Here is her website: http://www.rctaxidermy.com/index.html


And the meat processing place is Uvalde Meat Market and Processing run by the Jackowski family.

Here is their website: http://www.uvaldemeatprocessing.com/

Wind, Dream Hunt and Christmas stuff

Wicked West Texas Winds

Winds of more than 60 miles per hour whipped through parts of West Texas yesterday, Tuesday, December 8th, doing damage to structures and even the community's 50 foot tall Christmas tree at Starbright Village.

I first learned of the winds when my mother, who is learning to text on her cell phone, sent me a message stating her neighbor's barn had blown over the fence into her back yard. The story to air on CBS7 News at 10pm.

She said she called the tv station after she saw it happen and they came to film and interviewed her. (She thought to do that because I used to work at CBS 7 news for a long time).

Here's my mom, Mary Ashley:

Here are pictures of the damage from the station's website:

Here is the written version of the story from the station's website:

Wicked Winds Wreak Havoc on Permian Basin 12/8/09

Beau Berman CBS 7 News

bberman@cbs7.com

December 8, 2009

Midland, Texas -

Trees and power lines fell victim to fierce winds that took hold of the Permian Basin today, affecting travel on Interstate 20 and tearing down nearly everything in their path.

Whether you were driving the Interstate or cruising through the city, 60 mph winds made their mark on the roadways.

"In December you don't expect it. In March, maybe. But this time of year you don't usually expect that kind of wind", said West Odessan, Terri Bomar.

Drivers on I-20 didn't know what to expect, facing tumbleweeds left and right, evidence of the vicious wind rifling across the highway.

In West Odessa, the wind wreaked havoc on a horse barn.

"I first saw the roof flying up and folding over and in a little while, puff again and another part of it blew over", said neighbor, Mary Ashley.

The wind ripped the three-wall metal structure out of the ground and over the fence as its inhabitants looked on.

"We would have lost seven horses", said the owner, Mrs. Bomar.

She came home to find her barn upside down, a $25,000 financial blow.

"If it would have gone the other way it would have been a tragedy", she said.

In Odessa’s “Starbright Village”, the holidays took a hit.

The metal cords holding up the city’s Christmas tree were no match for the wind today off I-20 where even the Starbright Village Christmas Tree came tumbling down.

"I heard that it was supposed to be pretty bad. I didn't know it was going to do this though", said Ashley.

High-powered gusts took down power lines in Midland, just another sign indicating the ferocity of these winds.

CBS 7's own signal tower found itself in the middle of the windstorm.

For Terri, the wind signaled the downfall of her barn, but she’s not blowing it out of proportion.

"Ohh... I can't tell you how thankful. God's watching over us today. That's for sure", said Bomar.

The heavy wind gusts have blown their way out of the Basin for now but Starbright Village is closed until further notice from the city of Odessa.

Joshua's Dream Hunt coming up
We have BIG plans for this upcoming weekend. Joshua has been asked to be featured on another TV show. He gets to go on a Dream Hunt for a deer in Del Rio, Texas. He has never done anything like this before.

Josh has some mixed feelings about it. He's excited to be going to shoot a gun with his dad. But not sure he will want to get near a dead animal.

His dad is super excited for him, though, and can't wait to see the big buck the scouts have been watching and tracking for us.

I'm just glad Josh has his pacers so he can maneuver into the deer blind easier and still breathe big enough.

If you want to learn more about the non-profit agency responsible for the hunt and the tv show, check out their website:

http://www.castofdreams.com/index.php

Right now, it looks like we should have some nice weather for the hunt in Del Rio. Here's the forecast:

Below are some pictures I took last weekend when we went to let Josh practice shooting a friend's gun in preparation for the hunt.

I feel cruddy

I'm starting to feel like I'm coming down with a bad cold or flu (hope not though - especially with the big plans over the weekend coming up). I started feeling pretty achy around my neck yesterday and a little feverish though I haven't seen my temperature go up really. I've had a little congestion. I'm taking lots of vitamins and some medicine and trying to get lots of rest and drink lots of liquids. Hopefully I'll kick this thing soon so I'll be ready to go.

Christmas Gifts

Josh received a box this week from a very special Christmas elf. Inside was a beautiful stocking with his name on it and several small gifts. They are wrapped but the paper is tearing so I told him to leave them in the box for now and I'll tape them up while he's at school and then we can put them under the tree.

I was so glad he received some gifts because we just can't afford to buy Christmas gifts this year. We are having to save every penny we can to pay the taxes on our house.

One of Josh's nurses went with him yesterday and helped him buy gifts to give to us. That was SO SWEET of her. Josh was ear to ear smiles as they told us not to peak and wrapped the gifts.

Christmas Plans

We hope we may have visitors for Christmas since it does not look like we'll be able to go see our family in Odessa like we had hoped this year. My parents will have to make arrangements for my dad to get his dialysis done here and have oxygen available for him. And hopefully we can talk James' mother into coming along, too. Josh really wanted to have Christmas at home, anyway. And Steffany will be too far along in her pregnancy to travel outside of the San Antonio area, so maybe we'll get to spend the day with her, too. James and I will have to work right up to Christmas Eve anyway.

Merry Christmas Video

Below is a video I put together a couple of years ago at Christmas time. I really love the Christmas songs and enjoyed putting pictures to it. I hope you like it, too.

reminder.... I've still got lots of Stethoscope Covers to sell (or give for a donation) if you'd like one, let me know. Drop me a line at jwooten116@att.net.

Check them out at my recent blog post : http://vwootenworld.blogspot.com/2009_11_01_archive.html