Harper had her appointment with the genetic doctor at Children’s Thursday morning last week. (This was an appointment our pediatrician had set up right after she was born.) He said she was doing really well. Her muscle tone is good; therefore she may not be delayed in her milestones of sitting up, crawling, walking, etc. This is a big deal for babies with Down syndrome. At our first appointment with the genetic counselor, she said it usually takes DS babies twice as long to reach their milestones.  

The Down syndrome and Craniosynostosis are two unrelated issues. Harper just happens to have both. From what Mark & I have read Craniosynostosis happens about 1 in 2500 births. I was surprised it was this frequent. Down’s happens about 1 in 100 for mothers my  age, I believe. (I had that advanced maternal age, Mark would say. He referred to it like it was something I had caught J.)

Everyone we have ever encountered at Children’s has been wonderful. But this time, I felt my feather’s ruffle when the genetic counselor commented on how much cuter Harper was this time than when she saw her last. What kind of comment was that? J She was VERY cute at 3 weeks.

Thank you for praying about the insurance situation. Last week was a hard week until we got our approval letter in the mail. Monday we received an email from the hospital saying the insurance had denied the procedure. Mark then began calling to see what we needed to do. He finally got a hold of someone at the insurance company that told him we needed to file an appeal; so he did late Monday afternoon. (Someone at ins also told him they thought it would pay out of network. Tuesday morning they said no; it was denied--in or out of network.)Tuesday afternoon—hospital called to say it had been approved. The insurance would send us a letter. Wednesday—no email from insurance so Mark called to check. They had no record of it being approved. Mark then called the hospital; they thought it was two different departments in the insurance company that hadn’t gotten word to one another. Thursday—received a confirmation number of insurance approval—Wooohoo! Friday—got a letter in the mail saying insurance had denied the procedure. We noticed it was dated Monday, but not before our hearts had stopped, once again. Saturday—another letter dated later in the week confirming insurance approval. What an emotional roller coaster! Mark did all the calling and emailing-- He talked to everyone he could think of including the governor’s and a Senator’s office trying to get her surgery covered.  Thank the Lord this much is behind us.

I am starting to pack a few items. We leave next Saturday. Harper won’t be at church any this week. I am trying to keep her from being exposed to too many germs.  Thank you for your continued prayers.

  Much love, Brook