2007: Pygmy allosaurus
2009: Puffy alien/monster creatures… unsure exactly but cute.
Mommy reporting: Sorry all the posts came to a screeching halt. Life took over. But I do have a lot of things to post hopefully in the next week or so… In the meantime, here’s what two girls at a pumpkin patch who are cold and don’t want to bother getting their coats on look like. They like “stealing Daddy’s body heat.”
Braska reporting: Last week on Friday, Mommy and I took a trip with Coach Katie. She went with us to talk to a bunch of 6th graders in another town a little far way from here about Down syndrome. Mommy talked to 6 classes of them… she said the same thing every time and they watched a video. Coach Katie talked, too. She told a little about my cheer squad that I was on last year.
After we talked, we went and had some lunch with the teachers. One of them is Mommy’s friend from a long time ago. Me and Katie took some silly pictures, too. Well, mostly I was silly…
It was fun day. This is our second year to go down there and talk to the kids. And we’ll probably go next year, too.
We’re getting new floors in our house. So our piano is in the middle of the kitchen. And we eat breakfast on Mommy’s bed. It’s kind of weird. And we have to wear shoes all the time to be safe.
So right now I can’t show much pictures, but I’ll have some good ones soon!
Mommy reporting: This pic is from 3/20/11… Braska was 4. She wore braids a lot back then. Now, not so much. Not because I don’t want to do them, because she is just plain not able to leave them alone. She gets in a zone, touching them, moving them, feeling the texture. Seriously interrupts everything she’s doing. It’s hard to watch, quite honestly. It’s like this often with her hair, especially the last 9 months or so, and it’s getting worse. It’s a sensory thing, clearly, but I just can’t figure out what tactile need isn’t getting met in order to be obsessed with her hair, especially braids.
So we cut her hair much shorter, going with a regular ponytail, which has often been the preferred way since it’s out of her face and out of sight. But she got to the point she wouldn’t leave it alone either. So we cut her hair again, in the attempt to be able to have nothing in it (the ponytail holder got to be the obsessions for a while, just wouldn’t stop touching it) but it’s now a problem to have it down. She flips it and messes with it constantly.
To say I’m frustrated is an understatement. It’s been an issue with school, with her following directions, and at home, too. I just don’t get it. There’s got to be a way to help her, but even with sensory specialists, no progress was made. And now she’s no longer in private therapy because our insurance has a limit on visits per year. An appeal for more visits is in process.
I don’t know what the point of this is other than to say I saw this picture and I realized I missed the braids, they were cute and simple… but we move on. Hoping this phase is short lived. I refuse to go bowl cut on her. No sir, not gonna do it.
Today’s a big day, too. Me and Mommy and Coach Katie (one of our cheer coaches) are going on a trip to talk to a whole BUNCH of kids about Down syndrome. Me and Mommy went last year. I’m sure it will be fun again.
Mommy reporting: So…. today I’m 40. And I’m good with it. I’m actually excited about what feels like the beginning of the next big life stage, but there’s always a slight tinge of sadness for me when it comes to birthdays and anniversaries of different things. I’ll not go on about that here, but I did want to show you some things that made me smile as I looked back. Miss B in some of her earlier cute glory. (If you need more, go to the archives in the left margin and go back to 2007 and 2008… lots more where these came from…)
From October 2007
Braska reporting: Sometimes KiKi and I will read together. I can read books by myself, but she’s a lot faster at it than I am. I like to sit with her and look while she reads books to me.
On Friday, we were reading Curious George. It’s a big book with lots of his stories in it.
While we were reading, she asked me to scratch an itch on her arm. She kept telling me where to scratch for her.
I’m happy to help. She reads books to me, and I scratch for her. We work pretty well together.
Mommy’s Edit: I found this tonight, and I couldn’t help but smile… how far they’ve come!
Mommy reporting: Today we had an appointment with a PT who specializes in pelvic floor issues. Typically that’s for older women who have bladder issues. But I took my almost-7-year-old to see her.
Maybe I should back up a bit… I’ll try to summarize as simply as possible.
Braska is very verbal. We thought that since she could tell us “I need to go potty,” when she was 2 we would be knocking this potty training thing out with no problem.
And it has not gone that way. At all.
Braska will be 7 next month and, though she has success on the toilet sometimes, is no where near consistent. We’ve tried scheduling, and every possible “sure-fire method” including those deemed as especially for kids with DS.
I’ve been convinced for a while that something wasn’t clicking, either with the right sensory messages getting to her brain or something medical. But then she’d do ok for a day or so, and I’d think we were past it.
But as we approach her birthday and still spends what feels like zillions of $$ on pullups, it was time to go to the next step and have her evaluated. So I took her to urology at SLCH last week.
Turns out, after ultrasound and different relaxing methods tried in the office, that Braska isn’t able to empty her bladder. This, in turn, means that she is not ever getting the sensation of the bladder filling and then learning that it means it’s time to go to the potty.
So when she does tell us, it means she’s going right then (which happens a lot) or there’s some other feeling she’s getting, which leads to frustration for all of us when we go in there and nothing happens. She would often say adamantly, “I do NOT need to go, Mom!!” and then she would start to go before she stopped talking. Several things like that which made us believe she didn’t get the right signals.
Bottom line at urology office: It’s a fixable problem, and apparently not a difficult one. I kicked myself that we didn’t do it earlier, until the urologist said that she wouldn’t have been a candidate for this treatment before, she’s just now the right age. So I gave myself a break on the kicking…
We got orders for pelvic floor therapy with a specialized PT, and we also started her on a medication to help her empty. We have returned to miralax as well to be sure that all evacuation avenues are running as they should be, since the ultrasound showed that there was a lot hanging around in there too. She’s “regular” so we thought that was all good, but apparently that wasn’t the whole story.
We also ordered a watch from Potty MD on recommendation from the dr, to help Braska get her own cues (vibrating watch every interval that we set it for) to remind her to go after we’ve made sure her body is doing it’s job.
So yesterday we went to the PT, and she gave us some exercises to do with B every night. And we have a new position on the toilet as well… against my previous advice to B, to sit with legs open more, and lean forward. Oh, and the feet MUST be on a stool, not just hanging off. That was new also to me.
So we’ll try the stuff, we’ll do the exercises, and I’ll keep praying it comes to be. Dr says she could “be done by Christmas” and I laughed out loud. Can’t imagine, but hey, bring it on! I would seriously celebrate with a party if we could accomplish that!!
And since I couldn’t coordinate my schedule to work well with picking Kinlee up and helping with lunch at her school and still manage to get Braska back to her school for more than a couple hours, we called it a day off for Braska. She got to relax in the morning before the appointment, go see her “other school” friends for lunch and recess again, and I’ll take that every time. I just love watching those kids get so excited to see her each time she visits. Priceless.
Kinlee reporting: Friday was 50s day at my school. Mommy made me a skirt really fast for me to wear.
Braska’s school was on a vacation day so she came with Mommy to my party. She has lots of friends at my school since she went there last year, so everyone is always glad to see her.
This is all of the kids from the kindergarten classes at my school with all 3 teachers. We had a fun 50s day!
We even had a sock hop…it’s a dance!
In the afternoon, Auntie Rach came to pick us up and took us on a secret mission. We went to get ready for a surprise party for Mommy’s birthday. It was a super fun time! There was a lot of music and friends to see.
It was a great day of parties!
Mommy has more pictures of her party on her page too…