Dreamseekers and Company

54 photos
6 videos
2 medical documents

Some medical documentation for both the chromosome microduplication we learned Daniel has (does not cause arthrogryposis) and some other related chromosome stuff:
rarechromo.org/media/information/Chromosome%20%203/3p26%20deletions%20FTNW.pdf
ncbi.nlm.nih.gov/pmc/articles/PMC1182094/pdf/AJHGv74p1286.pdf
Notable associations of this gene being disrupted are: small stature, developmental delay, autism
I’m still digesting.

Videos:
Daniel being cute at mealtime

Dress rehearsal videos:

Playing outside:

Maggie is clipping her fingernails in my bathroom, half dressed for the day and still with the night’s tangles in her light brown hair. She’s supposed to be doing chores, but I suppose clipping nails is always timely.

Jordan is sitting in a sunny spot on my bedroom floor a few feet from me. He’s sitting cross-legged and playing with a long piece of cotton rope that I bought for him on his birthday. Occasionally he absentmindedly leans forward and pops a hip out. He doesn’t notice that the pop sound makes me cringe. Now he’s getting up and looking for things to tip over or throw, so I tell him to sit down again and thankfully he is content to do that.

Anna was just in here, already completely finished with chores, and I told her about her special activity that is this afternoon. (Grandma is going to pick her and Maggie up and take them home for the night and then tomorrow, Grandpa is going to take them fishing!) She is still riding high on the news that she is moving up in ballet classes next year.

Carolyn was downstairs on the couch underneath a pile of blankets feelign sad last I saw her. She was declaring the unfairness of the world since she is not getting to go with her sisters this afternoon. Her face is already suntanned and her young light brown hair is sunned to blond already, despite summer not actually arriving for another 3 weeks.

I just finished my coffee, but I’m not willing to get up and disturb the current calmness in Jordan so I’ll stay here for now.

Daniel is in his bedroom listening to some rock radio station on his little brown radio that I got from a garage sale for it’s replaceability. He’s another child whose stability I don’t want to rock. If I go in there (or a sister does), he will ask for something that is somewhere else in the house and we’ll either have to go find it or tell him no, which will result in his heart being torn apart and a scream from the depths of his past hurts will erupt. Not even kidding. If we do go get the thing, he’ll ask for another. And another. Endlessly. The cycle of unmet needs in his life tells him he needs to see concrete patterns of our love over and over. Even if what he asks for is impossible.

So I’m hiding from him for a few moments of coffee and Jordan in a sunny spot of rug. It’s a warm, content moment.

Oh good, Carolyn is up and singing now!

Goal for this morning (1 of 237) is to clean the clutter out of my bathroom. Wish me luck. (edit to add: It didn’t happen)

Video is from last night – Maggie watching Odd Squad. Daniel rocking to some music by Wintergatan. Me looking up some books while being distracted by the same music performance:

Sleeping arrangements have been non traditional around here lately. I wanted my bedroom back from Daniel (my office is in our bedroom too!) so after 5/6 months, we moved him into the little girls’ bedroom. Several weeks later, Daniel had a rough patch and the girls were getting interrupted. Soooo, we asked if they wanted to sleep downstairs. They did! So the little girls have been sleeping in the living room almost every night for a few weeks. They’re enjoying that so much, I’m going to offer them a tent in the yard this afternoon. I’m betting they love it.

Daniel obligingly showed me all angles of his head for “before” photos and then Carolyn helped document the rest of the process. I am still not sure if this is my favorite cut on him, but I am happy it doesn’t look overgrown any more!!!

Carolyn at her well visit was in the 50th percentile for her weight and the 70th percentile for her height. That’s pretty typical for her. 5 1/2 years old and about 42 pounds and 3’10”.
Maggie was in the 4th percentile for weight and 15th percentile for height. That is also pretty normal for her! But it means that at 8 1/2 years old, her sister is almost the same size. Maggie was 46 pounds and 4’1″.

I went to the playground with all the kids and without any other adults. The sunshine and Jordan’s energy levels demanded it. Thankfully, it was successful!

I had to get a video of Daniel for health insurance showing him going over different surfaces, without help, through a doorway, etc. He was not happy about being put in his wheelchair…. see the 2 seconds of tantrum at the beginning? Then I told him where a cell phone (with games on it) was and he very happily went to get it! Motivation. haha