P's head is getting worse despite the helmet. I am pretty sure that one of his sutures that was "narrowing" on an earlier CT scan is now fused fully, so I sent pics to his craniofacial team and they think he needs to be seen sooner than we have his follow up scheduled. So we go back in a few weeks now. It sucks because it's technically a cosmetic issue, but with one suture fused his face could become very asymmetrical. I am not sure which would be harder--putting him through the very invasive surgery or watching his face get progressively more deformed.
On top of that he is, like, not sleeping and having some sort of muscle spasms MOTN that just make him hysterical. So we see his rehab doc next week to discuss how we'll handle that.
Not surprisingly my pump output is tanking. I'm down to 25 oz a day from 32 a few weeks ago. I am having lots of anxiety and recurring nightmares.
Oh, Brie!! So many hugs. I really, really hope your little dude catches a break soon. Many good thoughts to your family. Please try to work in some self care and stress relief if possible.
I think I've said this on here before, but I have a cranio kid who had surgery at 9 months. She's 6.5 now and surgery is a distant memory. PM me if you would like - I'd be happy to share the details of why we decided on the surgery and what it was like.
"Hello babies. Welcome to Earth. It's hot in the summer and cold in the winter. It's round and wet and crowded. On the outside, babies, you've got a hundred years here. There's only one rule that I know of, babies-"God damn it, you've got to be kind.”
I am so sorry! That is such a tough decision to make. Hopefully after you meet with his doctors they will have some information that will help guide you.
I hope P can start finding comfort at night soon. There is nothing worse than not being able to take away your baby's pain! Poor little guy!
Poor kid and poor you. Hugs and some zzzzzzzs to you.
No idea and probably way out there - but sometimes for muscle cramping at night, magnesium can help. It also causes diarrhea and I only know of adult use. But there are also magnesium gels. Again - just throwing out a wild idea. Hopefully I am not in an essentials oils box on the spreadsheet.