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

Saturday, November 11, 2006

Thursday, November 09, 2006

Progress - I think

I've got several items of news to share with all of you who are following my saga with my son and his rare disorder.


Joshua's story may actually make it onto the Discovery Channel!!! I spoke on the phone with a TV producer in London, England this morning. He works for an independent film maker and he came across Joshua's story in the San Antonio Express News. He contacted the reporter who wrote that article, Melissa Stoeltje, who then passed on the message to me that he was interested in Joshua's story. The producer will still be contacting some of the doctors who treated Joshua and will present the story - along with some other medical stories - to the Discovery Channel - within the next few weeks. I will let you all know as soon as I hear any updates and whether they decide to do the story.


We thought we were going to have some nursing care for Josh - paid for through our insurance company last week, but that did not pan out. So, now another company has taken on our case and a case manager is due to meet with us this afternoon so a nurse can begin coming a few nights a week starting Monday. We are so happy to have SOME help - FINALLY. I am cautiously optomistic about this news - but will wait to be elated until it actually materializes.


We have been trying for some time to find a way to get Medicaid for Joshua so that he can get the nursing care his doctors have ordered for him. They say it is important for Josh to have a nurse 24 hours a day. Josh's case manager at his doctor's office has been tirelessly working on finding a way to make this happen. And, earlier this week, Josh and I (after speaking to a nursing home the case manager had found) decided to head out to some local nursing homes to try and find one that could help. We ended up finally getting the name and number of the person to contact TODAY and have got the ball finally rolling on it. We should be hearing from the new case manager and nurse assigned to Josh's case within the next 14 days, then Josh will have to spend a night at a nursing home (when a bed is available at the one nursing home that does this in our area) before he can get assigned a Medicaid number.

I am certainly ready for some help with Josh. I find myself having a hard time getting up to check on his machines when they go off many times in the night - especially when it's several nights in a row that they do this. I thank God that we are finally learning where to turn for help with Medicaid - so Josh can get the nursing care he so desperately needs.

One last thing- make sure you take a look at my myspace page and see the new video on there. A dear friend who put many long hours into it created the video for me in an effort to do something to help us. God bless you, Amy, and your family, too. We love you, girl!!!! Then, you can find Amy on my friend's list and please write her and let her know what you think of the video. I think it is GREAT!!!


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