So Mr. Avery showed my up again. Crazy boy had a sleep study on Thurs to prove to the insurance company that he needs the bipap. After 3 nights straight of bipap, think he was well rested and decided he didn't need it. UGH. He never desatted nor needed bipap which was good and bad. We spent most of the day on Friday trying to get approved by the insurance company. I actually had the equipment on hand and the rep. was going to take it with him. There was no way THAT was happening as I just spent a week there for nothing if I did not get it.
Turns out our case worker looked into our insurance and no prior approval for needed for kids under 18. Are ya kidding me?? He actually did not even need the sleep study. LOL. But the drs. said he clearly has obstructions and needs it and did not feel comfortable sending us home without it. So we have a new piece of equipment.
Avery is sooo happy to be home and in a great mood. I hope this bipap will really improved his quality of life. I tell ya, these mito kids are just fighters and they can go from literally being on the brink of death to a complete turn around no matter how tired there body is.
Also, our neuro has been doing some research and thinks the boys may have Pyruvate Dehydrogenase Phospate Deficiency which is similar to what they previsouly thought. So they took a chunk out of Avery's skin yesterday and are sending it to Canada to be studied. Now if they are positive for this it will be great b/c a mutation WILL be known which is what we wanted for Janessa and her future family. They would be one of about 4-5 in the world with this dx. Told ya my kids would be famous, LOL. It also means that Avery which I already knew came to us for a direct purpose, not only to bring so much good in our lives but to find a mutuation for us and a proper dx and I am certain that will happen.
Also they tested him for Cystic Fibrosis which I was a bit nervous b/c he fit it but that was negative, thankfully. Like I said, I don't think my luck is THAT bad.
Anyways, thanks for all the prayers. Could you guys spare some more for Landon who is a fellow mito guy who is fighting for his life right now will there is Hurricane Ike reeking havoric outside http://www.caringbridge.org/visit/landonweber
2 comments:
Nicky"
I'm so happy that Avery is doing well and that you are home. You were in my thoughts and prayers. You must be on such an emotional roller coater that it must be tough to say on it. Hope All of you sleep well,
Love
Susanna
That's great news. It's so good to hear you sounding happier again. We'll think of Landon, and keep him in our prayers.
Alison.
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