First was her Neurology follow up. This was a planned visit. We saw the Nurse Practitioner this time (whom we love!). She was so sweet - went over all Meagan's history again, her progress, her problems, her seizures, her medication... etc..etc.. All in all, they were happy with her progress and that she seemed still "herself" and to not have any gross regressions as of yet. I did ask her about Meagan's clenched and twisted hands. She did a physical exam and said that Meagan still had low tone, so there was no sudden change in tone for her causing it. The CNP said most likely it is due to neurological overflow. In other words, Meagan is trying so hard to work on new skills, that when she is finally at rest (relaxing, sleeping or eating), her hands are over compensating by curling up or twisting because she's had "enough" input. It made complete sense to me, and, I was glad to hear she thinks it's an overload issue rather than a complete change in Meagan's tone.
Today was her Neurosurgery appointment. This one wasn't planned. As we know, Meagan's head has been all different shapes and sizes over the last months, especially in the last several months since her cranial surgery. I never worry at gradual changes... it's just her skull and the plates shifting, forming, and moving around as her head grows, fluid moves, and her skull bones settle in to place. But she has remained fairly "full" in the last month and a half. Finally she settled into a skull structure that seemed to stabilize and we started to see her head fill out in its usual empty spaces. Fast forward to Sunday night. Meagan went to bed as usual. When I got her out of bed the next day, her head was like this:
... when just days before, it had been like this: (the top ridge is not the concern.. it is the two front spaces that had gradually grown and now have completely sunken in within 24 hours as in the above photos)
I wasn't 'too' worried, however, we have seen a few regressions in Meagan lately with her sitting and her hands. We were working very hard on supported sitting and could work the entire PT session - for a good hour. Over the last several weeks, we were held to 4 minutes max with Meagan in a sitting position. This was very unlike her. She had really come a long way and actually preferred being held to sit up rather than lay down and play. Now, we were going backwards. However, I wasn't pressing for an appointment because she was still smiling, eating her bottles, and overall, her happy go lucky self. Once the PT mentioned Meagan's change AGAIN this week, along with her sinking head that happened literally over night, I decided a quick email to the NSG with some pictures couldn't hurt. Dr. R looked at the pictures and asked us to come in today.
It's never a good feeling when the Neurosurgeon you trust and who always calms you acts nervous upon seeing your child. He paced a little, felt around Meagan's head, looked at her and then stepped back. He then got a chair, pulled it over in front of her, and sat there going "Hmmmmm." Dr. R called Dr. W, the plastic surgeon that assisted with the surgery, but had to leave him a message as he didn't pick up. Dr. R went on to explain that it is either a fluid issue we have, or a plate issue. If it is a fluid issue, turning the pressure up in her shunt should help and improve her sinking. If it is a plate issue, more fluid won't necessarily help and we may be looking at a bigger problem. So he turned up her shunt pressure today, and scheduled another CT scan for 3 weeks from now. He wants not only brain pictures but also another 3D reconstruction of her skull bones so he can see exactly how the bones and implanted plates are laying. He said of course it's always a chance with Meagan because she has been so sensitive with pressure changes on her shunt. He said he's never had a patient quite like Meagan. I don't think that's surprising... she sure is unique and likes to make that known!
I wasn't expecting this appointment today, honestly. I thought it would be our usual "Oh, that is a plate dissolving"... or "oh that is the natural shift as her skull adjust" that we have been through so often. This was different - I'm glad I did email the PA and that they saw her promptly.
So that's where we stand... we are hoping for a great CT in 3 weeks from now. I'd much rather have to balance some fluid than possibly talk of going back in to fix some plates that have slipped or collapsed. I'll be sure to keep everyone posted on the results!
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