July 15

17 hours! Part of that was the outreach and part was having my mom and stepfather visit, each of whom did time in the room and also watched Amy while I went in the room. This was a short week of days for SR compared to usual since we went away Fri-Sun.

I noticed that Sarah's weight had dropped by about a pound so decided to stop any further attempts to reduce dairy and to go back to full-on dairy as we used to do. I'm still trying to get in a variety of healthy things but for now I think we really need her to be able to have half n half for her milk. Soy milk just doesn't cut it. Since she often has 1-3 cups of milk or chocolate milk in a day that is a big difference in calories. I think soy milk is roughly 80 calories per cup. Half n half is more like 240. What was then slightly alarming was that the day I went back to the full load of dairy (Wednesday) Sarah had a lot more of her excited hands and jaw and sounds. Luckily I am married to someone who reminds me that we don't have enough data and shouldn't immediately freak out and assume causality. After all, the change was also made after several intense days for Sarah. We had had the outreach and then Mom-Mom and Pop-Pop visited Mon-Thurs morning. This also coincided with a visit from Kathy O'Neil who does Anat Baniel Therapy and Sarah had two sessions on Tuesday. All of this was good and it was also different from the norm and potentially a lot more for Sarah to process. Maybe this was just her processing. Anyway, we have stayed the course to get her weight up and after 3 days of increased hand/jaw stimming it seems to have gone back to what we were used to as the new normal (only with men's pants/shorts or with doors). It was actually helpful in some ways to have the spike in that kind of stimming because it pointed out just how much it had stopped before.

Mom-Mom and Pop-Pop (Janet and Ralph) noticed significant improvements in Sarah's language and eye contact compared to when they were here in March.

Sheri said her session with Sarah was one of the best yet and that Sarah was connected the whole time.

Normally I instruct volunteers about how to respond when Sarah cries and wants me during her time in the SR room. Thursday I got to experience a lot of her crying and wanting to leave and wanting someone other than me. She is devoted to Noah, our newest volunteer, and was trying to climb the door to get to him. Inspired by Megan, I drew pictures on the white board of him riding his bike and Sarah saying "come in No-na." We also wrote a letter to him with me asking if she wanted me to write a certain thing and then she said yes or no; many of the ideas were hers. We had two hours for our session so we had lots of good play and some joining too. The crying bits didn't last too long and she was very attentive as I drew the story and wrote the letter (some of which read something like: "ride your bike here on the sidewalk. come in. come upstairs. I am crying because I miss you.")

On our weekend away Sarah really liked hanging out with Joel (and his shorts) and at least once went over to him, looked at him and said hi, without our prompting any of it. She also got much better with pronouncing Kirstin and had a good time in general with her cousins Zohar and Noa. (Amy and Noa are very close in age and it was super cute when they had dance parties to Amy's musical flowers).

Megan had suggested playing Connect Four with Sarah, a game we don't yet have. As luck would have it, the house we were renting this weekend had it! She was interested right away (of course, with little plastic pieces). At first I just joined with what she was doing and then I started talking about dropping the pieces in the wall and then moved on to us each doing a color and taking turns. When I started guiding her to block me and telling her I was blocking her she cracked up. She loved the word "block"  and would say "block eyou." So we played the game for real twice and each of us won once. I was certainly guiding a lot, but it still felt real.

There was also a chess set at the rental house and Carl and Sarah sat with the board between them and he told her some of where the pieces went and she seemed attentive at least for a solid few minutes.

We have shifted away from stepping Sarah through words sound by sound and are now telling her what piece was missing or emphasizing a part of the word but still saying the word fluidly. We also just ask her to try again to say the word more fully. She is really trying. She pauses and thinks about it and then tries, sometimes sort of successfully and sometimes the word gets more confused but it is lovely how much she is willing to try.

Foodwise, we are now telling Sarah she has to stay seated throughout the entire meal, until everyone is done eating. She is really not thrilled with this and tries her utmost to leave. The good thing is that usually once the storm of wanting to leave has passed she then eats more.