Find out how a rare breathing disorder has changed the life of my young son and my family.

Thursday, February 15, 2007

Thursday, February 15, 2007



Days of Documentary Filming



If you've been reading my blog all along, you know that Joshua (and the rest of us) are about to be famous because a tv crew is doing a documentary on Joshua and his illness for The Discovery Channel.



Our on-camera interviews were filmed this week. I was chosen to go first - well actually one of the doctors who treated Joshua was first - but I was first amongst the family members to get in the hot-seat. My interview on Tuesday lasted nearly 5 hours!!!! Of course there were many noise distractions and we did break for lunch during that time. Some interesting behind-the-scenes notes about the shoot.. mine was set up in our kitchen. And to reduce the noise, the crew had to turn off the air and even unplug the refrigerator! They put their keys in it to help them remember to plug it back in when we were all done!



After my interview, the crew had to move around lots of furniture and lights and screens and camera, etc. to set up for interview #2 - Dad (James). His interview was much shorter - but quite important - especially because James was there with Josh the early morning when he went into respiratory arrest and nearly died! But James was careful not to get emotional on-camera, saying this wasn't about him and his emotions after-all - it was about Joshua.


Check out James in the "hot seat"





Below is the producer, Iain.
He and most of the crew came over from London.



Another change of scenery for another interview. This time, big sister, Steffany took the hot seat. Her interview Tuesday late afternoon actually did not get underway until around 5:45 or 6PM! I sat in on her interview and realized she gave a couple of really good "soundbytes" and I'm sure we'll see them in the finished product.



Josh got to hide out pretty much all day Tuesday in his room, playing a golf video game. And, as you can imagine, that didn't hurt his feelings one tiny little bit! But the crew promised him, they'd have a wee chat with him on Thursday then have a little fun afterwards.




Here is Josh hanging in his room while Mom and Dad are interviewed





Below, my sister, Amanda hung out with Josh in his room
during most of Tuesday's filming.


Wednesday, two San Antonio doctors - Morse and Tomasovic - went before the camera to give all kinds of medical details about Joshua's diagnosis of Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction.




Then, this morning, as promised, was Joshua's turn. The boy of the hour! I helped the producer ask Josh the questions after he saw Josh respond quicker to me. I was happy to help. Josh gave some great, quick answers. And he seemed pretty thrilled about having the lights and camera on him - even if he did NOT like to have to be the one wearing the trach and hooked to the ventilator.


Josh's turn below:









Once the cameras and equipment were set up outside, and Joshua and I mic'd up, the action moved outdoors (in around 40 degree temps) for a fairly long game of catch. We walked outside our house, stood in our front yard and threw the baseball back and forth.. and back and forth.. and back and forth.. so many times, I think both of us were completely exhausted by the time the crew yelled "cut!"

The guys in the crew thanked us, packed up and was off to the airport to catch a plane to Chicago. That where they will interview a specialist about Central Hypoventilation. Dr. Debra Weese-Mayer did the sleep study on Joshua back in late September and found that Joshua needed to be on the ventilator 24 hours a day. She is also the one who is looking for funding so she can perform genetic research into the cause of this illness Joshua (and a few others) have.


The one hour long episode on Josh will be among six (at least) in a series to be titled, "We Can Rebuild You" and will air on the Discovery Channel sometime in the near future - once each episode is filmed and edited. We'll let you know once we get word on the airdate! So Stay Tuned....

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