We have not updated Miriam’s page for a while, but as anyone with a health issue knows, no news is usually good news. Miriam’s last expansion in May went very well, with no complications. She had a fun and easy summer. The highlight was definitely when she and her sisters got to spend a week with their cousins at their grandparents’ house. They called it “cousin camp” and had a great time. Now she has started school! She is in kindergarten, enrolled in a dual language program where her classes alternate between instruction in English and in Spanish. It is challenging, but she enjoys it and loves her teacher and her new friends. Here is her school picture (we can’t believe how old she looks!):

Miriam had a CT scan in October to check the volume of her lungs. Her last CT was done just before her initial VEPTR surgery, so this gave us a chance to see how much separating her fused ribs and inserting the VEPTRs has allowed her lungs to grow. Her doctors were all thrilled to see that her lung volume has nearly doubled in the (almost) two years since her first surgery. The rest of her has only grown a few inches, so proportionately it is a huge change. It was a welcome affirmation of our decision to go ahead with surgery. While the corrections made to her spinal curve are a wonderful byproduct of the surgeries, it is the lung growth that should likely most improve her quality of life and possibly extend her life down the road.

Three weeks ago, we visited Dr. Williams for Miriam’s pre-op visit and got some disappointing news. Based on her x-ray, and the fact that rod bump on her back has gotten more prominent, he thinks that the hardware that attaches the long rod to her spine has worked its way through the bone and is no longer anchoring her VEPTR. This means that in addition to the planned expansion, he will need to move the hook which anchors the rod to another vertebra. We are hoping he can move the anchor up to the vertebra above and shorten her rod to match. If for some reason that is not possible, he will need to move the anchor to the vertebra below where it is now. He would then replace the entire long rod, as the one she has now would need to fully extend to reach the next vertebra and would need to be replaced at the next extension anyway. We are of course hoping that she can keep the existing rod as that surgery would be less invasive and have a quicker recovery time. We won’t find out what will work best until she is in surgery, so please pray with us that it is as easy as possible for her.

Surgery is scheduled for this Monday, Nov. 17. The girls are excited because their grandparents arrived today to help. Here are a couple of cute photos of Miriam and her sisters from Halloween. Thank you so much for keeping Miriam in your prayers!

Cecilia, Hildi, and Miriam

Halloween donuts

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