Overall, Noa had a pretty great weekend. When we were brining Noa's things into the house on Friday, she actually managed to get herself out of the car and into her stroller AND close the car door by herself while we weren't looking. This something we've never seen her even attempt - so this was quite surprising! (The door was open and her seatbelt was off, but it usually takes a bit of back and forth to get her stand up.) I wish we had photos of this... I wish we'd seen it!
Noa also enjoyed spending time at her new desk and did was brailling using the manual brailler that we have at home. We found sentences on cards we already had that she wanted to transcribe. She would find one and then tell me to get lost. Then I'd come back and we'd pick another one. I asked her if she wanted to bring her "story" to school and she said yes, so I put in her backpack.
Noa was also very interested in playing with her sound machines. She asked for some old ones that she hadn't used in a while and really liked a button that makes a sound that sounds like "Bah-BAH." She wanted to know how to spell the sounds... so the "Bah-BAH" was the best I could guess. She spelled this all weekend (and sometimes pretended to braille it) so if she is spelling something that looks that this... that's probably why.
Unfortunately, we continue to have problems getting out of the stroller. All three stroller walks this weekend ended with stand offs over 30+ minutes. She seems to have stopped doing the mysterious sign - but this weekend would ask verbally for "purple zuzzies" (which we don't have have), while at the same time signing either "scarf." The pulling on her feet is something that often happens - I've tried doing stretches with her in the past to see if that helped but it doesn't seem to, she just keeps wanting more.
We are very much open to any suggestions regarding how we might deal with this situation. We know that going on a walk in the stroller is one of Noa's favorite things to do, but these stands offs are making it difficult for take her on walks because the aftermath is so disruptive and unpredictable.
Ending on a happy note, Noa is very happy with her new haircut. Since she was wearing her hair down, I tried to do something a bit more "big girl" and she seems to like it.
Noa had a great weekend. Overall in a good mood. She loves being back at school. On Friday, she seemed quite tired after her "good week" at school. You can see in the photo below, she is dozing off with a water bottle in her hands.
The big event for Noa this week was getting a new desk. We wanted her to have a work space that allowed her to move from one activity to another on her own a bit more. She was VERY happy with the desk and spent quite a bit of time there (mainly playing the piano and sorting coins) but I showed her around to where other items are and she helped to pick where some went. I'm brailling items for her as well so she can find them. She even has a built in cup for doggy to sit in, and she likes the star stickers. The white board directly in front of her is magnetic.
She did a bit better standing up out of the stroller this weekend. Of course we also started every walk with a long discussion about standing up "fast fast" after stroller. While we still had delays and mysterious demands, the situation as a whole was a bit less emotional and not as lengthy or difficult to get past.
In the spring and early summer, Noa enjoyed spending time on her treadmill. She would usually spend about 20 minutes on the treadmill with Daddy.
Later in the summer, Noa shifted her focus to a stationary bike that, until then, she couldn't really reach the pedals on. At first she struggled to turn the pedals smoothly but in recent weeks - with the help of some upbeat music - seemed to get the hang of it.
As some of you know, we inexplicably misplaced Blue Green Yellow Doggy. It has to be somewhere in the house, and yet it’s location remains a mystery.
She has now accepted, as a replacement, the Doggy formerly known as Blue Doggy (or Doggy #2). I colored his nose yellow and his tail and mane green with a permanent marker. This doggy goes by the name: Greentail Doggy. In recent days, Noa has spent a lot of time asking me to confirm the doggy’s colors for her: Nose Yellow, Tail Green, Body Blue.
We do not mention Blue Green Yellow Doggy.
Noa and Mommy have been doing yoga everyday, in fact it's become a favorite part of the day for Noa. I filmed the whole routine I do with her because it's one that we seem to have created ourselves - a combination of stretches, yoga moves she already knew and moves that I added in response to the kinds of movements Noa seemed to be interested in being able to do (twisting her upper torso, ankle flexibility and opening up her hips.)
The whole routine takes a little over 20 minutes. The video is in three parts. I've also included a few bonus videos.
PART ONE - leg stretches
Basic leg stretches (with the alternate leg straight and bent), some hip flexibility, ankle stretches and circles I do a bit of massage mainly on her lower legs and ankles as they tend to get especially tight.)
PART TWO - back and twisting
I for these stretches, I try to focus on getting Noa sit up and twist with her legs in various positions. She really seems to like moves where we have some give and take. Just after these moves, she adds in a few of her own which she does on ocassion. In the past few days she's started to add arm circles (which she likes from APE class with Matt)
The final set of twisting moves are especially challening. While Noa's form may be lacking, she seems to understand what we're going for and she is really commited to the move.
PART THREE - bonus moves
In this first part of this Noa does one of her favorite moves called "Noa is a woo-woo chair." The woo-woo chair is a rocking gaming chair that that allows Noa to rock all the way onto her back. Noa loves it and seems to understand what she needs to do to rock back and forth this way, but can't quite get the momentum going to do the move entirely on her own.
Sorry about the angle for the final set of moves, but these are nice both because they are moves that the two of us do in unison (which she really likes) and because she is able to move from one move to the next smoothly.
TWO BONUS CLIPS
The two clips below show Noa doing Happy Baby (a move that she particularly enjoys) and from this angle you can see what she is doing. Also a different angle on the moves we do in unison. She tends to round her back in the Cobra position, but if I reminder her with with a light touch on the back she does just to relax that.
One of the most exciting developments has been Noa's desire to be independent, to do things, as she says, "self." She will also sign "self" though it oten looks more like "ten." Noa has been very interested in getting around the house by herself.
Noa likes to go up and down the stairs on her own. She is able to cross from the top of the stairs to (and from the bathroom), and likes us to set up her walker so she can walk from the bathroom to bed (and from bed to the bathroom in the morning.) She is interested in trying to get around on her own, and is doing great with understanding her left and right.
She also now dresses herself (which we know she's done at school for a while, but she hasn't wanted to do at home) and has shown an on and off again interest in wiping herself. Sometimes, if she wants to pull up her pants using both hands, she will lean her head against my chest so she can bend down.
She also sometimes wants to stand on her own - for example standing up from the potty on her own - but sometimes really wants to walk on her own someplace where there isn't anything secure for her to hold on to. She's been using the walker more at home, though there isn't much space for walking more than one or two steps.
She has also been interested in going out in her red wheelchair and pushing herself around – she will turn left or right if we ask her to.
Going on a walk in the stroller is one of Noa's favorite events and one she insists on daily (and mourns the loss of when it rains) but the unwillingness to get her out of the stroller at the end of a walk has become a significant and limiting issue for us.
These stroller stand-offs can last over an hour, often feature tears, hand-biting, attempts to hit or kick at us, some very animalistic growling. Often Noa will do attempt so do some stretches in the midst of this, though there isn't room to do these stretches in the stroller. She will also do what looks like an ASL sign, though we have no idea what it is. It looks like someone putting on a hat with the letter "c." She seems to be quite convinced it means something, we asked a few folks during Literacy Camp but no one recognized it.
As with most Noa meltdowns, her behaviors seem to be more about communicating frustration than communicating a specific need.
These stand offs often end with Noa needing hugs with Mommy for quite a while, some time sitting with Mommy, or on Mommy's lap (example of Noa trying to fit on Mommy's lap below.)
We had one day this past week in which we got up, had breakfast, went on a walk, had a meltdown and by the time she'd recovered and it was ready for lunch is was after 5pm.
We have tried waiting out these spells. Giving her 5 minutes, then coming back again to see if she'll stand up. On the weekends this works fine, but when Mommy and Daddy also have to work and show up for other people it's a problem, especially if (as in the video above) we've gone walking on a rail trail so we're in a parking lot.
We'd be glad for any support on figuring out how to deal with this kind of issue.
Though Noa continues to do well during the day, we’ve been using a double diaper at night.
Sometimes Noa will get up for a late night potty break (between 11pm and midnight, but sometime she won’t. And frankly, Mommy and Daddy needed to get some sleep. This is definitely an area where we've lost ground.
A couple of months ago we started to time meals with Noa. Meals were getting so long that they seemed to take up most of the day. We generally set the timer for 30 minutes but she still manages to stretch things out quite a bit with multiple requests for “one more bite.”
Recently Noa began purposely letting food drop on the floor. She finds this very entertaining, despite the fact that we've repeatedly tried to expressed that this is not funny and does not entertain us in the least.
For most of the spring and summer we were successful in getting Noa to wear shoes with braces most days, especially if we were going to do something like APE or treadmill or PT, for which we could make a solid case. August did not fare as well and she may have only worn them a couple of times during August.
She still seems to have a red mark across the top of each foot from a favorite pair or Mary Jane style shoes. She just kept pulling them tighter and tighter until they left that mark (more than a week ago.)
We sent a part of no-braces shoes to use as slippers.
This blog is managed by Noa's Mommy, with editorial support from Noa's Daddy.