Lyle here:
We finally received word yesterday afternoon that insurance reached a determination. Their opinion at this time is that given the plan language they would deny benefits for Rylie's BMT. However, they state their opinion may change once a claim is filed. While I could spend the better part of today and tonight writing about the history of this issue and my thoughts on how outrageous this is, this is not the venue for such a rant. I will only say we have been told that our insurance plan language is standard language and we know that other insurance companies have covered BMT treatment for Hurlers. It is standard care. We will begin tracking down more precedence information beginning on Monday. Another frustrating detail is that after waiting for a decision all week, we get the decision on Friday afternoon so that we have to wait until Monday to begin further action.
In the mean time, my mom and dad left yesterday morning after being here for nearly two weeks, helping us wait. Jordan arrived last night for the weekend. Rylie is glad to have Aunt Sis here.
Based on the original schedule, today would be day -2, meaning two days away from transplant and 10 days into preparatory drugs and chemo treatments. Now we have no idea when she can even be admitted. We will likely be getting one more ERT here at MN then going home for a while.
Thanks to all for your continued prayers.
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6 comments:
Hi. I just finished rereading ALL of your entries (since last November!), and looking at the cute pictures that record Rylie's development over the past 4 months, and feeling the love and support stretching out to you from the posts of family and friends everywhere. WOW. This story isn't over yet. Hope you can get some rest and have some fun and relaxing times with Jordi (Aunt Sis!) the rest of this weekend. Hug Rylie for us.
love you forever. L&B
Cling to the Proverbs 3 verses and we'll cling to them with you. Gary and I can't imagine the difficulty and strain this is on you... and then we look at the pictures of Rylie and just burst into smiles. Hang onto God's promises! we send our love. Gary and Deb
My mom is using my blog username to comment. She speaks for all of us. The insurance stuff doesn't help my already cynical nature, but i will pray for you . . . and for the insurance company to get their head out of their ass and help our sweet Rylie.
love you guys so much it hurts,
Jake, Jules, and Ben (Ben told me to write "ass.").
Not sure we can even fathom the roller coaster ride you are on. Just more proof that the insurance industry needs a MAJOR overhaul!!! Lyle -- I would have been ranting and raving weeks ago; your outward demeanor speaks volumes. We are with you in spirit and continue to send all our positive thoughts and prayers your way. May you face this week with renewed strength and know we're all behind you guys. Love and hugs!
Jo & Leonard
We are so sorry to hear of this awful news. I can't even begin to imagine how frustrating this must be for you. We will be fervently praying for you guys in this regard. We will pray that hopefully this will all be able to be resolved before you have to leave and that you can continue with the BMT. We will be praying that God will give you His peace that passes all our human understanding and that He will give you His wisdom for the next steps to take. We love you guys and miss you. Give Rylie a hug for us.
Hi! We just wanted you to know we're thinking of you and hope for the best.
Hang in there!
Randy & Melissa (your neighbors)
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