March 25

We had our biggest week yet! 12 hours!!!!!!!!!! I know I say this a lot, but I am feeling ever so grateful for my lovely volunteers both in the playroom and with Amy. I am also deeply grateful for the wonderful team of school teachers and therapists and for the out-of-school therapists. We have such a good team for Ms. Independent (as one helper at school recently dubbed Sarah). Sarah definitely knows her mind and how she wants things to be. While this can be frustrating I know it will stand her in good stead.

Sarah routinely tries to repeat things she hears us say (tonight it was "new pillowcase," sounded out quietly with not all the components but enough so I knew what she was saying.) Her words are also getting more blended. "together" isn't quite a full word but it has a nice flow to it. Lately she's been talking about how we will ride or fly on a plane together to see Grandma and Grandpa. This sounds sort of like "wad on p-ain to-ge-ahr. G-ma, G-gpa." This was after her time with Carl and when we were at dinner and she was trying to say it she kept looking at Carl for cues and reminders about this new story of hers. It was so adorable and clearly focused. She also talks about "Ma-ma, Pa-pa back h-m" which means that Mom-Mom and Pop-Pop went back home. When Mom-Mom called the other day and I put the phone to Sarah's ear, Sarah listened very intently and smiled at the memory of how Mom-Mom said "Mac and (pause) CHEESE!" and then when Mom-Mom said if she were here she would give Sarah kisses, Sarah turned toward the phone and gave two kisses!

D. blowing her nose on various colors of tissue is losing some prominence as a story, though still surfaces occasionally. Now Sarah mentions giving D. a hug. The main story is of Dr. K. looking in her ears or Dr. M. looking in her ears or that there are wires in the wall (Wa-ahr! wa-ll). The word wire is said very loudly. In terms of colors now Sarah likes to say the wrong color for almost anything, usually saying that something is pink or yellow (p-k, ya-oh) and then when we ask if that is true she says no. She also likes to talk about climbing the stairs with amy or that we "wa-d ba-oo c-ah to-ge-ahr" (ride in the blue car together). This is amazing that she so frequently puts 4 words together.

Wednesday night bedtime was difficult (I think I allowed her nap to be too long) and I found myself sitting with her wishing she would just shut up. What a lovely thing! That our daughter who didn't start speaking until so long after her peers is now talking a blue streak sometimes and I am wanting her to not talk so much! Delightful (though it really wasn't when I just wanted her to go the *&#(% to sleep). But I know in the big picture this is such good progress and I love that she likes practicing her words and wants us to respond.

Sometimes Sarah asks to play with the ipad and before we even answer she says no. This week she gave us the Ode to No, saying no in many different ways, including one where it seemed that she was spelling it (nn-oh!!!!!!!!!). We were cracking up and she was having a grand time.

I think Sarah really understands how many 1, 2, and 3 are. I'm not sure beyond that. I haven't worked too much with numbers, just holding up my fingers or me counting things. I think she probably does more at school. This week I held up one of her toy cakes that has 1 hole for a candle and I asked how many holes there were. She promptly said "wu-n" and did the same for the next cake with "t-oo" and then I think she was trying to say three for the next one but it might have been trying to say 4. she is still working on the "th" sound. Speaking of which, I am beginning to think that for the past week or so at least she may be saying "the" about light reflecting on the water but that it sounds more like "duh" and so I was thinking she was trying to say something else and I just wasn't getting it. (this could still be the case). She does try to say the word reflecting (f-k-t-ng).

Sarah had another Reiki session this week and I intend to have this be a regular part of her week. The initial magic around bath time hasn't lasted but if I talk about shampoo and conditioner that interests her enough that she doesn't resist hair-washing as much. In any case, it was good to feel like we had some energy balancing work after the pneumonia.

When she was sick she lost about 2 pounds! Those were hard-won!! So we are offering the highest calorie things again. In some ways we always do this but when things are going well we start to include a more varied diet. I still am offering apples and turkey but I'm pushing the super milk and super juice (our names for things like kid essentials 1.5 and resource breeze, very high calorie fortified drinks) and letting her eat butter straight if she wants it. I weighed her tonight and it seems that we have regained some ounces. Whew! We still have some catch-up but her system seems back to normal a bit more and I've given her cyproheptadine a couple of times because of allergies (and the appetite stimulant side effect doesn't hurt).

Last night at dinner Sarah was eating mac and cheese and she started putting some noodles on Amy's high chair tray. Up until that time Amy had been rejecting most of our offers. When Sarah shared her food, Amy was quite happy to partake! Another time when Amy was in her high chair and was crying Sarah said, "Mm-ay-ee m-k" and I realized she was saying that Amy wanted milk.

With her volunteers Sarah did good turn-taking with toy candles and good ball rolling. Also, her favorite thing to do when we get home from school is to kick a ball up and down the sidewalk (as I shadow her and offer sips of high calorie beverages). In school she received a party favor blow thingie where you blow into it and the paper unrolls and makes a sound. She finds this absolutely hilarious and laughs so hard she can barely blow and sometimes makes the sound with her own voice instead of blowing hard enough to make the sound via the plastic tube.

May you all find something uproariously funny.