In the past few weeks we have had orthopedic and nephrology (kidney) appointments for Alyssa.
For her ortho. regimen; we are to return in 2 months for x-rays. Aside from that Alyssa has no restrictions. Dr. Linton happened to be at this office for a rotation in King of Prussia. We hadn't seen her since the NICU, she was one of the doctors that cared for Alyssa. She seemed impressed with Alyssa's growth and wellbeing.
There were no concerns for her kidneys, Alyssa's scans were normal at birth. She should have repeat blood level drawn in a few weeks to check functioning. All in all she is typical in this area.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. (Psalm 139:14) Being grown in faith because of my daughters diagnosis of Trisomy 18, a rare genetic syndrome. This is my reality of loving Alyssa and the impact she makes in our family. I praise God for showing us His grace and revealing our human frailty throughout this journey.
Friday, October 24, 2008
Wednesday, October 8, 2008
RSV and Trisomy
Good news.. the RSV drug (synagist) was approved, the appeal worked! So it's covered 100%. Yeah! We do have a secondary insurance for Alyssa but there were problems in coordinating the benefits. It seems that all has been corrected and this should decrease some of our concerns. To my understanding Synagist is given in a seris of 5 shots each about 3,000,00 or 15,00.00 total! Smoking cows, that a costly drug!
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