Weekly update - Jan. 30, 2022

Well, it's been a week. Shall we dive in?
  • The days preceding Christmas and Christmas Day itself were fairly good in terms of R.'s regulation. From the 26th on... really not so good. Really, really not good. So not good in fact that we ended up in the ER last night.
  • As much as I was grasping as straws with the PANS/PANDAS post, based on how she responded to the Ativan in the hospital, this really just could be anxiety/trauma related that hijacks her brain. Enough anti-anxiety meds and her brain can calm down. The ER doctor and I agreed the a more effective anti-anxiety med is what is needed. 
  • Because I'm really good at leaping to the worst case scenario, I'm still keeping a reference for Anti-NMDS Receptor Encephalitis saved on my phone because she also fits the profile for this potentially deadly diagnosis. 
  • No, my own brain has not been a fun place to live recently.
  • I hate that the only way parents can convince the medical establishment that something is as severe as what we are saying is to wait until we reach the end of our ropes and take the child to the ER. This is not preventative medicine.
  • Are you as tired of reading about this whole saga as I am of living it and trying to describe it to medical professionals?
  • I've now added another item to my ongoing list of things that allow you to jump ahead in the queue at the ER... bringing in a screaming child who is wrestling her parents on the way in the door. 
  • In the meantime, other children at home have been occupying themselves the best they can. At least they are all older and have the capability for doing this.
  • K. has started to be interested in auto mechanics so asked for a book on how cars work for Christmas. A gift he received. The other day he had his new book out and was comparing his detailed Lego car models with the book. Then, he began building the different parts out of Legos to understand the better. His brain just functions in a totally different way from mine. I also love that he came up with this activity all by himself.
  • G. asked for and received drawing supplies and has been doing a lot of cartooning.
  • L., who did not receive a puppy (and truly, can you imagine adding a puppy into our lives at the moment?!) did receive a large book about puppies as well as a large amount of clay. So L. has been working on trying to sculpt puppies out of the book.
  • Y. has fallen in love with counted cross stitch so received some supplies and patterns. She spent most of the afternoon working on her newest project. 
  • D., still in recovery mode from an intense college semester has done a lot of sleeping and movie viewing.
  • H. also received drawing supplies in the form of a large set of watercolor pencils. Her efforts at experimentation have blown me away. This is not rote copying, but true artistic experimenting without any outside input. Once she realized that the pencils could be used to color and then mixed like watercolors, she was off mixing backgrounds which she then let dry to be used as a base for added drawings. Here are some of her most recent work.





 I particularly love the little potted succulents.
  • After having waited for over a week to watch a movie for a family movie night, then having those plans evaporate because R. needed both parents to not become complete insane, I think we might be able to try it tonight. So, I'm off to watch Death on the Nile with everyone.
See you in the new year.

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