From the recent concerns about Sarah’s lack of appetite and weight loss to the current issue of her being “pausenated” (constipated) we are having a serious case of deja poo. Sigh. I never thought we would be dealing with these issues again and here we are. The good news is Sarah’s appetite is definitely better even if not quite back to what it used to be. We also saw a GI doctor and got lots of bloodwork for that doctor and for Sarah’s neurologist. I haven’t heard from either doctor about their interpretation of the results but I can tell from looking at the results myself that her TSH is low. That means her thyroid needs some assistance. Being hypothyroid can contribute to fatigue, which Sarah definitely seems to have been dealing with for many months. Thyroid issues have run in my family for many generations so this is perhaps not a huge surprise.
Otherwise, Sarah did have another good week overall in terms of her health and happiness and school attendance. Amy had a good week too. She went to her first swim practice for her new swim program. It was loud and a bit overwhelming (for me) and was mainly just assessing the kids for what level they should be in, but it was still a good experience. And we learned that practice starts 15 minutes later than we originally thought and is a shorter drive than we thought, so that makes the whole thing easier for us and in terms of Carl getting home to be with Sarah. What was not great was learning that for sure I need to find a new swim situation for Sarah because her place will not allow her to continue past the end of the year. They stop their kid program at age 13 and just didn’t realize that Sarah had aged past that. Despite making an exception for nearly 3 years, they say that they absolutely cannot continue making an exception. The private lessons they offer are too far away. And they say that she wouldn’t really fit with the adult class because there is less supervision. You mean that a 15 year old with special needs wouldn’t fit with the grown-up class?! Astonishing! GRRR. Anyway, I’m trying to let go of my grumbles and to just move forward to finding her a new situation. I have emailed two places but haven’t heard back yet. I also continue to wait to get an email back from one of Amy’s teachers and am ever more frustrated that this seems to be an impossibility. Why make it possible to email a teacher if they won’t write back?
Amy’s school had a fall festival - the first since before the pandemic - and she loved it. Our timing only made it possible to stay for half an hour and Amy was very upset to not be able to stay longer. Now I know for next year to prioritize attending for the whole time. In terms of other events from the week, thrice I planned for Sarah to go somewhere and thrice she dug in her heels and refused to go. I had arranged for the kids to get their bangs trimmed and Sarah absolutely would not go. I don’t know why, since normally that is something she enjoys. When Amy and I returned, Sarah was downstairs saying she wanted to go. But, nope. That ship had sailed. So now her bangs are still almost in her eyes. But the only way for me not to be too mad about the situation was to decide I won’t make a separate appointment for Sarah. She will have to wait until Amy needs her bangs trimmed again or Sarah can let me trim her bangs myself. Then, at the fall festival, Sarah didn’t want to get out of the car. So she and Carl stayed in the car while Amy and I went to the festival. Yesterday, we wanted to go for a walk to a beautiful outlook point in the woods and Sarah did NOT want to go. That wasn’t a surprise because she basically never wants to go for such walks. Still, I wish we could do short hikes as a family more easily. Last Sunday Carl and Amy went on a hike to a waterfall and the whole experience looked magical, with fallen logs creating bridges to traverse. Yesterday there were no fallen logs but Carl and Amy had fun with a water bottle duel.
After the bang-trim that wasn’t, we did have a nice dinner with Grandma and Grandpa at our house. Now, this weekend we have Mom-Mom and Pop-Pop visiting and that is lovely. It has been many months since we saw them in person. Carl and Mom-Mom played duets of the baritone horn and flute, as they often do during visits. Sarah decided to accompany them on the piano and actually did a notable (ahem) job of keeping time. Amy dressed as Tinkerbell and danced and cartwheeled all around the room while the music played. Sarah also enjoyed trying to play the baritone horn, making the sounds with her voice instead of the force of her breath.
Lots of love to all of you.
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