It’s a snow day across much of the northeast. The snow started off slow overnight, but it’s coming down in buckets now, and I’m glad the kids are home and not on the roads.
However, I’m trying to get some work done for the Planning Board for which I am secretary. Ha! Silly me, not doing it until there’s a snow day.
This is how it’s going. Props to my friend JW for summing it up succinctly with a link. 😂
So, I’m doing other things that require less concentration. Like blogging.
There’s a little news to report.
School district love continues
Let’s see. For starters, I still love my school district more than life itself. I asked for some testing of Sunny to determine if she qualified for services through our State’s Office of People With Developmental Disabilities. The general feeling, based on language in the IEP she got from her old district and based on how she’s doing in school and at home, is that there’s a good chance she will qualify, and we want to give this kid every chance in life and if there are more services she qualifies for? We want to utilize them!
Per their usual, my call with the school psychologist was so positive. Yes, they’re happy to do the testing because the services could help her. Yes they’ll work on it right away. Yes they think they can even get it done before the end of the school year, and she was apologetic that it might take that long. Dude. I was praying for before the end of the school year so they’re within the bounds of my hopes!
Hip Hip Hooray, Therapy!
Next up on the news list is that Sunny now has a therapist. She was deeeeeeply skeptical about the idea when I first suggested it to her. She remained just as wary for the months we stayed on the waiting list, right up through the time the new therapist asked me lots of questions about Sunny, and until the therapist took her to the play room and played a few ice breaker games with her. Then gales of laughter started pouring out of the play room. By the time the therapist left, Sunny pronounced she couldn’t wait until next week when she comes again.
I’m thrilled to bits. For starters, my family believes in therapy wholeheartedly. Hubby has a therapist. I’ve just graduated from therapy but had been in it with a wonderful therapist for about 9 years. And we’ve gone to a couples therapist from time to time when issues crop up between us. Sprout had a therapist when she was a little younger, even. Therapy has helped us all tremendously.
Sunny has Big Stuff going on internally. I don’t know for sure but I’d guess those feelings might be about the separation from her Mama, anger at her Mama for failing her and her winding up in foster care, feeling of betrayal in developing a bond for her new parents, terrible trepidation because she doesn’t know what her future holds, and frustration with her annoying little sister who pushes all her buttons (it happens the other way ‘round too).
I think therapy will be so helpful for Sunny. She can’t tell me a lot of things without feeling like she’s betraying someone she loves. A neutral party can hear and hold sacred all her fears and frustrations, and help her learn coping strategies. Maybe she’ll start to sleep better. Maybe she won’t have whole grumpy days when she pushes us all away. Maybe she’ll be able to concentrate on school work better. I figure there’s pretty much no way therapy is going to hurt, and myriad ways it could help.
CH…what?
Finally, exciting news: we know what the girls have! Their form of dwarfism has been elusive to track down, but between their old geneticist in the neighboring city, and their new geneticist at Nemours, we finally have an answer: they have CHST3 related skeletal dysplasia. There are fewer than 100 diagnosed cases of it in the world, and we know three of them! There have apparently been known families with it in Oman and Pakistan.
Does knowing change anything? Previously we thought it was Spondyloepiphyseal Dysplasia congenita (SEDc), and CHST3 related dysplasia is related closely to SEDc but is it’s own distinct category. That there are so few people known to have it is a challenge because there aren’t that many studies to rely on, but there are people who have it and there are some studies, so we know more than we did a few days ago. It’s helpful to be able to predict what will happen to them growth wise, and joint wise. That knowledge will shape their treatment.
We are allll geared up for our pitch to Sunny’s new insurance carrier that she needs to go to Nemours like her sister. The geneticist nearby and Nemours have written letters to help persuade the insurance carrier that it’s medically necessary for her to go. April 1, we plan to start the push! I fully expect it will happen and Sunny will get to go to Nemours hopefully early this summer.
Off to go make some snow day kids some hot cocoa, and try to finish my actual work before my meeting tonight!
sprinklesonachaoscupcake.com 