We are going today for a follow-up CT scan to check her fluid since the new shunt was placed about a month ago. We have been a bit shocked over the difference in her head shape with this new shunt. The left side of her head looks like it is caved in, the bones collapsing over the open space in her skull. I have asked countless times, and am continually reassured that this is okay, even though it looks scary. Apparently, the old shunt was draining very slowly, while this new one drains much faster. This makes the CSF level low until the brain adjusts to the new drainage. Since there is no brain matter on the left, the fluid is all the hold up the bones. The bones won't heal for a while, so there is still time for the fluid to level out and push the bones back up into the correct position. Regardless, it is difficult to see my baby's head so lopsided. If we go out, she wears one of her many hats to avoid scaring other people (which has happened already - "Mommy, what's wrong with that baby's head?!")
Yesterday, I forgot to add one of the most exciting things about Scarlett at 7 months: She is almost 15 pounds now! As much as I fought the NG tube, I am glad we have it now because it is getting calories into her and she is growing. We have officially packed up all the 0-3 month clothes (some of which still fit until last week or so) and will hope that Scarlett's new cousin is a girl so we can see them all again soon.
Finally, more GBM families have found us! Faylynn is almost 3, finished with treatment and doing very well! She lives in Maine, but her mom saw Betty's video and found me! Lily is 2, and her dad started a Facebook group for families with Congenital Glioblastoma so that we can find hope and support with each other. That makes 6 other kids I have seen whose stories are so much like Scarlett's, but who are done with treatment and thriving. This is why I started this blog, to find more information and support and maybe some hope. It worked! Hooray!