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!
Do not work about the head shape, it will get better even if Scarlett probably will have some more bumps than a "normal" head. Here is Lily after her surgery and now you have to know what she has been through to notice it. (Let's see if this link works...)
This is such good news! All of it! Well, maybe not the part about small children being frightened by Scarlett's head shape, but you and the doctors all know this will work itself out as long as she continues to be healthy. I'm glad to hear you keep finding more and more support and encouragement. Your daughter is just so beautiful, and I love seeing how your little butterfly is growing and changing each day.
I can't imagine how reassuring and comforting it is to connect with families who truly know what you, Chris and sweet Scarlett are going through. I hope you continue to keep us minions updated when Scarlett is 2, 5, 8, 42...LOL. My daughter is 2 days younger than Scarlett and I think of her daily.
I hope all goes well with the CT scan. Try not to worry about the head shape. There are many non-invasive ways to deal with that. Also, when you hear comments like that child made, I hope you don't take it personally. When my kids noticed something different, a missing limb, trach tube, etc., I have always encouraged them to ask the person about it. It helps them learn about differences and (hopefully) puts the person they are asking about at ease... So they don't feel like kids are scared of them.
Oh my gosh!! I just logged on and saw Scarlett's picture for the first time in a long time. Sbe looks like a different kid!! I'm so HAPPY that the NG tube is doing it's job!!
On a comparable note...my twin 9 month old boys probably only 17 pounds or so. They were full term (38w1d, both over 6 pounds) and are not considered to be anything less than thriving. Charlie has no teeth, but crawls and pulls himself up into a standing position whereas Sam Sam has 2 teeth and just lays on his stomach with his arms and legs flailing. He can, however, move 360 degrees while on his belly, for which I am grateful. Charlie has a nice, round noggin and Sam has the flattest back of the head that I've ever seen. Brain tumor or not, these babies will develop so differently but wanted to let you know you seem on track with mine!! Oh, and both my boys still fit in some 6 month clothing but definitely are in their true 9 month size clothing. And they are both still available for when Scarlett begins to date (we're just over here in Pleasanton). They are ADORABLE!!
I think it makes such a huge difference to know that you are not alone, and for that I am glad that you have found others to reach out to, and vice versa (not that I'm happy any of you are going through this). Illnesses can be so isolating on top of the devastation...adding insult to injury.
My husband and I continue to pray and send good vibes your way.
Janette, Mike, Charlie and Sam Brew
Hello sweet Scarlett! This is the first time I've seen a picture of her, and she is positively a gorgeous little girl!!! It's wonderful to hear about her gaining weight! Pretty soon she's going to pass up my little man! Nicholas is almost 14 months old and weighs 17 pounds. Nothing wrong, just a tiny little guy. But if your daughter keeps up on the weight gain, my little guy will look so tiny next to her! :) I'll keep you all in my prayers, and may she always be a sours of happiness and smiles!
She is getting so big! I hope that she feels better soon and you can enjoy her smiles. :)
Just stopping by to say I'm still praying for your beautiful girl. And for you and Chris as well. Stay strong!
tears in my eyes! So happy that all is progressing well. She is simply beautiful and a miracle. I check on you guys every couple of days and find that I hold my breath until the page opens.
I know that her head shape will work itself out in time and when she is feeling better you might want to search out a good craniosacral therapist to help deal with some of the trauma she is experiencing. They help balance CSF. I've had the therapy myself and brought my 7 month old. It's almost a kind of energy medicine but you need an actual education to practice it. I'm sure you know about it but in case you don't here is some more info - you might want to seek out the therapy yourself - it really helped me deal with some bad PPD after my Charlotte was born. http://www.craniosacraltherapy.org/craniosacral-therapy/what-is-craniosacral-therapy/
I am so glad she's doing better. Seeing her progress is amazing and every little advancement is quite literally a miracle from the miracle child. I still hope to meet her, she is such a blessing, and she's blessed to have parents like you two. Always fighting for her, and always pushing to make her life better.
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