Saturday, August 14, 2010

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


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.


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:


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 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.


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.


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 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:

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Discovery Documentary - Life or Death : Battling to Breathe