On Sunday we decided to take her in to the hospital because she was having some labored breathing. They admitted her & we found out that she has RSV, which is a virus that attacks the respiratory system. It's pretty common and usually misdiagnosed as a cold.
They kept her overnight, and then sent her over for the MRI on Monday evening,and got some pretty shocking results. Apparently she has pretty severe Syringomyelia, which is an accumulation of fluid in the spinal cord due to the area around her brain stem being compressed. This is part of the Chiari malformation which happens as a result of the spine pulling on the brain during early development in utero. For more info, see this page.
Based on this new diagnosis, they've canceled all her other appointments and scheduled her for surgery this Thursday to decompress the area around the brain stem. We're not sure exactly what all that entails, but think it might be something like what's described on this page (although I really don't know where the similarities lie).
So please pray for the little angel, as well as her parents - this looks to be a pretty big week for us all. There's a chance that this surgery (if all goes well) could fix many of the things that have been wrong with her, but it certainly comes with some big risks.
Thanks for staying with us,
-J&N&A
4 comments:
Im glad they are getting to the bottom of these issues. Thinkin about her always!
~Auntie Natalie
Sounds like in many ways an answer to prayer to know what is causing these issues, but also a scary surgery with lots of unknowns. You three will be in my prayers constantly, as will the surgeons and nursing staff. She is such a beautiful little girl. You guys hang in there, you are loved and cared for immensely.
Hello from Tulsa,
-Prayers for Alex and a successful surgety;
-Prayers of the medical staff, for wisdom and skill and compassion'
-Paryer for the parents (you guys) for leaning on God in these time of the unknown.
“When you have come to the edge Of all light that you know and are about to drop off into the darkness of the unknown, Faith is knowing one of two things will happen: There will be something solid to stand on or you will be taught to fly”
We are praying for you all.
You are all 3 in my prayers this morning as the surgery is taking place. Hopefully this surgery will resolve lots of things with our angel.
Love,
Nana Carol
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