Today Scarlett had a neurosurgery check-up. They checked that her shunt was still set properly (it was), that the incisions from that surgery, both on her head and belly, were healing properly (they are), and that the shunt is doing its job of draining fluid from her brain (it is!). The main way of checking this is by measuring the circumference of her head. She has consistently been between 41-41.5cm since her surgery. This is large for her age and relative to the rest of her, but it is not increasing, so we're in good shape. We discussed the multiple soft spots on her head; there are a few places where there is no bone underneath. This is very strange when you feel it, but all babies have soft spots, so it's just another "special" aspect to her. They expect bone to eventually grow in these places. If it doesn't, they can do some bone grafts to help it...we'll just wait and see. They tried to squeeze her in for an impromptu MRI, just for good measure, but there was no opening in radiology, so we will just wait another month.
We got another interesting bit of information today as well: they are monitoring her growth for a head-shaping helmet. We did a 3D scan to set a baseline by which to monitor. In the meantime, we are supposed to position her head in a specific way while sleeping (I'm still working out exactly how to do this safely) to help round out her head. In the long run, I don't feel like it matters what shape her head is, but she may feel differently when she is older. I can imagine it now..."Mooooommm, how could you POSSIBLY expect me to go to school with a lumpy head? I can't believe you would do this to ME! Couldn't you have done SOMETHING?!" I'm sure it won't be this specific, but you get the picture. My mom keep teasing that her feisty attitude that has gotten her through so much is not going to just disappear...so if it comes to a helmet, we'll do that too. Add it to the list!
We're learning more and more the difficulties of spreading her care between two separate hospitals. We still feel that it was the best choice, since she is getting excellent care in each department, and they are sharing her records freely between each other so that everyone knows what is going on. It gets complicated when an issue pops up at one hospital that can only be answered by the other. For instance, when she had the shunt surgery in Oakland, the PICU nurses had to call Stanford to find out what size needle is used in her port (I wrote it down so that we have it next time). Even harder is that no other doctor has any idea what is going on with her skull bones. She is all Humpty-Dumpty (a very cute one!) under the skin and is a mystery to anyone who is not her neurosurgeon. When we were in the hospital last weekend, I noticed a little swelling, and the oncology resident who looked at her quickly admitted that she had no idea if it was normal or not for a baby with such an extensive surgical history. The further out from surgery we get, the less time we will spend in Oakland, which simplifies the whole process. We all have our fingers crossed that she keeps making such great progress that we don't need any surgery for a nice, long time.