Friday, January 21, 2011

No Snow, But BIGGER Prayers Answered!

In 2009 after being on a message board for parents with children with hypotonia (low muscle tone, usually a symptom of something, not a diagnosis), which was one of Garrett's symptoms from the beginning of his medical ordeal, I got frustrated and shared all his lab results....muscle biopsy, exam notes and labs, and several moms on the board messaged to me that he sounded like a Mitochondrial Disease case to them based on their kiddos with Mito. Then one of them shared the name of her child's specialist in Houston, Texas, Mary Kay Koenig. We got in to see her, and finally Garrett had a doctor on board who knew where to go from that point. After additional bloodwork and a second muscle biopsy, she had us come back and informed us we were dealing with Mito, likely a Mitochondrial DNA Depletion Syndrome. Genetic tests have yet to reveal the exact type, but I will share more on that in a few......

So when we lived in Louisiana, near Baton Rouge, we drove to Houston some for appointments and to see Dr. Koenig, and then before we moved, we started just flying there because Garrett has so much trouble traveling by car. So I would fly over with him, see the doctor, then fly home the same day or one day later. Then we moved to Idaho September last year. That also meant that we moved out of our insurance region AND we switched our insurance from Tricare Standard to Tricare Prime, saving money, but complicating things by needing approvals, authorizations, referrals that we had not needed on Standard. I called to see about seeing Dr. Koenig in Houston to continue care, and I was told I had to get letters from our pediatrician, Dr. Koenig, referral and then GOOD LUCK as we could be approved or NOT!! I wanted to CRY!!!! I knew we could afford to see Dr. Koenig, but it would cost at least $300 to see her, then whatever labs cost...then travel. There is a Mito specialist in Seattle, but that's far enough from us we would have to fly there, too, so it's really all the same. Plus, from my experience reading othr parents' experiences, many times changing Mito specialists can muddy water, tests often are repeated, etc., and at this point Garrett needs a BREAK, not more poking, prodding and testing!!!

While talking to Tricare about trying to get this appointment approved and covered, I learned that we might be able to get our TRAVEL covered as well....WHOA!!! I cannot tell you how much we have spent traveling to therapies, to Mayo Clinic with two kiddos in Minnesota, to Texas countless times....hotel rooms, air travel, gas, food, and NOW WE MIGHT BE REIMBURSED FOR SOMETHING?????!!!!! WHOA!!! I reveived an email with the packed to complete for the travel before the travel, and I had it all filled out, but the pediatrician's office seemed to be slow getting the referral sent in. Come to find out that they were waiting to get medical records from Dr. Koenig because Tricare said it would help to get those to Tricare to help our case. The pediatrician's office couldn't get the records because fax number was the wrong one, but no one called me or the office to get the right one. Finally, Thursday, after calling over and over and over for weeks, I finally asked the nurse to have the referral sent without records, and they did it and faxed it to me as I asked!! WOW!

So today I checked and learned that the referral went through......two of them, in fact. One mental health and other an evaluation. THEY APPROVED IT!!! WOW!!! Big prayer answered!! THEN I re-read the travel packet and noticed it seemed like I needed to get the travel stuff done before travel, but I had to have a referral number, and I had to wait on it so long. Grouchy faxed the travel documents today, and I felt like we would likely not get it there in time because the forms said DO NOT FAX OR EMAIL...MAIL ORIGINIAL ONLY! Uh-oh. I called this evening and they GOT IT and APPROVED IT!!!

Oh, and there's more. Garrett's G.I. tract is slowing WAAAAY down, and he has blood being tested now for Celiac Disease...again. Meanwhile, as we were working out this insurance and travel stuff, we were contacted to ask if we would allow Garrett to have a gastric emptying scan as part of a study being done on Mito kids and G.I. dysfunction. FREE!! AND we will sign paperwork in Houston which allows him into a genetic study looking at genes not previously studied in Mitochondrial Depletion Syndromes...FREE!! And this test may be the one leading to a name of the genetic problem causing his Mito!! ALL FREE!!

SO there you have it. Appointment will be covered at least 60% AND my travel and Garrett's travel, lodging, meals, rental car and fuel will be covered!! AND two studies may lead to great info and more answers! WAY COOL!!!

Now the best of it all is that my mom will meet us in Houston and fly back to Idaho with us and stay for six days!!! SO she will get to be with us when Garrett tries to ski and to go tubing and watch Addie and Ainslee ski!! HOW FUN!!!!!

Oh, and skiing did not work out today. The mountain is getting snow now, but none until this afternoon. We will try again next Friday with Grouchy and my mom!!!

Love and hugs to you and yours!! May we all notice and give thanks for all of our answered prayers.....and the things we forget to pray about but still get!!

1 comment:

  1. WoW Clara-Leigh!! You have had blessings heaped on you and your family. That is GREAT!! I DO understand what a big deal all of that is. These kiddos can get very expensive, and insurance can be such a pain. Jeff and I always say that a call to an insurance company=at least an hour. What great news that so much will be covered and REIMBURSED!! Thank you for allowing Garrett to be a part of the studies, as well. It helps y'all out tremendously, but it helps all of us other Mito Moms looking for answers, too! You rock!