We felt her pain and brought a few plastic medals (two for Noa and a few more for any other riders who needed them) and that seemed to satisfy her in the moment, though she did ask for a couple of her heavier real medals when we got home. They just make better noise.
In spite of the lack of medals, we all enjoy socially distant setting. It gives us a chance to commune to with the other riders and families at Noa's stable. Noa enjoyed the picnic lunch after (and wanted to know and spell everyone's name), and especially enjoyed a foot-push swing they have on the premises.
Noa seemed to really enjoy having her special riding cloths on (she helped to button some of the buttons on her shirt), and when we got home she refused to take her outfit off until after going out on her stroller ride. Of course, wore the medals all night, to bed and then to Potter on Sunday. She informed me that she wanted to put them on her walker at school.
It’s probably no surprise that Noa enjoyed her August vacation. Nor is it surprising that she’s excited about going back to school and back to Potter Cottage.
Noa was VERY interested in being able to maneuver around the house more independently over break. She used to insist that she walk with Mommy or Daddy in the house, but over break mostly insisted on walking either with her walker or by herself.
Even with the walker, she’d insist that we give her verbal directions and not touch the walker. When standing up from sitting on the floor, she didn’t even want us in the room. She also figured out – on her own – how to get off the floor after yoga by using the couch. She can also get from the sofa or her bed to the floor on her own. She’s getting much better at crawling as well – so once she gets on the floor she can crawl to where we’re going to play or engage in an activity.
Despite her push for independence and an ever-increase more proactively expressing herself, we faced some rather long stand-offs (especially toward the end of the month) in which we knew what Noa didn’t want, but had a hard time getting her to tell us what she wanted (even when she seemed to know what she wanted, she would fall back on chains of vaguely frustrated signs that didn’t communicate anything – for example, “red, blue, pink, purple, music, shapes, orange”).
While this is very much typical Noa behavior (at home anyway), it seemed very much at odds with her desire to be more independent. Interestingly, these struggles seem to happen most often after she’s had a negative response to something we’ve suggested, offered, or even just mentioned.
A new phrase that Noa really enjoyed over break is “bye-bye, see you NEVER.” This started with me wanted to differentiate between things that we will see later, and things that go in the trash (you’ll see tissues again, but not this tissue). She really seems to think it’s fun to say and seems to get the idea of it. Before coming back to school, we sorted her toys into bins for: “home,” “school,” and “never.”
Noa asked us to spell things for a lot over break, especially names of foods.
Our struggles with applying deodorant continue. At home she will only allow a very expensive hand lotion to be used on her underarms. It’s not effective as a deodorant. We understand she has a bit more flexibility with this at Potter.
Noa will very rarely allow us to treat the ongoing build up in her ears (I think we got three chances to treat it over of the entire month).
Noa had two doctor visits over break: one with the dentist, one with her GP for her annual physical.
While it took quite a lot of in-office negotiating and bit of hand biting (after having already spent 24 hours preparing for the scenario at home), when Noa did finally consent to 4 sets of 10 second sessions she did great and was a rockstar. The dentist did mention that her gums were somewhat red and sensitive because her current brushing doesn’t get to the gum lines on top and bottom. He wasn’t concerned but suggested it was something to work on.
Noa also did remarkably well at the GP, in great part because Noa was very clear ahead of time about what she would and wouldn’t allow, and we were able to respect that. She had a list (which we listened to repeatedly for 24 hours): chest, back, head, nose, mouth, ear, ear, finger (for oxygen), tummy, hand, hand, then “finished, see you in one year.” She expressly (and very politely) requested “no arms please.” She also wanted to wear long sleeves (one of the few battles we won). Also, no legs, knees or feet.
Usually at the doctor’s office we have to keep her wheelchair moving the whole time or she starts complaining, but she stayed very calm this time (she did have the zuzzies going) and just constantly repeated her list of things we could examine for “10” and then “finished, see you next year.” After about 20 minutes going over medical history stuff, Noa seemed to be losing it a bit so we asked if we could move on to the exam, which we did with Noa instructing the doctor what should come next.
While we lucked out by not having to do a shot – which would have broken the “no arms” rule – it was great to have two positive doctor experiences and Noa really seemed to appreciate the fact that her wishes were respected. Full disclosure: Noa did bite Mommy on the arm at the GP (she may have been trying to bite her own hand, but once she realized it wasn’t her hand… she didn’t exactly hold back).
Noa had a great time today at the NEC biking event in Lebanon, NH and it was an extra bonus surprise that her ol' buddy and pal Lily was there.
Noa was so excited to be reunited with Lily - in fact, we'd never seen anything quite like it. When she realized she was saying hello to Lily, she got so excited that she turned around and gave me (Mommy) the most excited, jumping, squealing hug. It was like a thank you for a surprise gift. Of course, the whole thing was a complete surprise to us too but I didn't mind getting a big hug for it!
Even though we only spent about an hour at the event, it was about a day's worth of excitement.
As folks may have noticed, Noa seems to be fascinated with jewelry lately. This weekend she decided she wanted earrings. We had quite a bit of back and forth in which she made it clear that she wanted the earrings ON her ears (not something - like medicine) in her ears. Like mommy.
I told I would give her earrings in the afternoon. I said this thinking we must have some old clip-on earrings somewhere. We did not. After failed attempts to find clip on earrings at Goodwill and Walmart, we had success at a nearby outdoor mall. We hoped to get Noa engaged in selecting and buying the earrings which she was not interested. On the plus side, she was very patient with the entire process was even agreed to wear a mask the whole time we were out and about. She really wanted those earrings.
Once we got home, she was thrilled to wear a part of purple fluffy earrings on her spinning swing for about 25 minutes, after which she decided they would be better on Electra Monkey.
Noa was also glad that I put tags on her underwear (like she has at school) but wanted them to be right next to the seam, so I promised to fix them before the next day. In short, she got some very clear ideas about how she wants things to be and she's been very patient in explaining these things to me.
Noa has also enjoyed using her pockets to carry selected items around during the day, and taking things out of the drawer of her new bedside table. She's also been enjoying doing things by herself (standing up from the floor, playing piano, writing braille.) As soon as she has everything she needs, she waves us off with a "bye bye Mommy" or "bye bye Daddy."
Noa continues to like standing up with her walker. On Saturday, I asked her if she wanted to stand up by herself or with me. She replied, "self" and then added "Soon. Bye-bye Mommy." She was very proud to stand up and turn herself around, and get herself from her room to the walker to the stair to dinner almost by herself.
All in all a great weekend.
So, after last week's big surprise, I spied on Noa's room cleaning activities to see if I might be able to catch the lady in action... and I did! It's pretty exciting, if I do say so myself!!
The video is a bit long (even with a break in the middle). I started when she first reached in the direction of the walker. I just put it where it had been the week before. Towards the middle of the video, she realized she still had a few toys to pick up and I was afraid my camera might run out of space so I paused filming until she seemed to finish with that.
I figured I'd include the full video here because I think the moves leading up to standing are also interesting.
In other news, Noa had a quiet but fun weekend. Since she had her COVID shot on Friday and it was that time of the month, we just figured we'd take it easy and that seemed to work fine for everyone. She seemed to be a bit tired Saturday but other than that no real reaction to the second shot.
She was very glad to be able to do her spinning swing outside in the nice weather.
Noa had a great weekend at home, which included a bunch of signs that we don't understand and a surprising and very exciting development!
Now for the amazing story: One of Noa's usual weekend tasks is "cleaning up her room" - basically, she lays on the floor, we dump her toys on her head and she sorts them into four bins: bumpy blocks, brown blocks, balls and stuffed animals. This is usually a time when we can sneak off and doing something fun like dishes or laundry. On Saturday, Noa was "cleaning," Jeni was in the basement and Ben was in the kitchen when Ben heard a noise. It sounded like someone was walking around upstairs. He thought it must be his imagination - still, he decided to check.
Upstairs, Noa's toys were all cleaned up (a bit odd because she often takes her time or get distracted playing with items) and Noa was gone. Jeni must have come up, he thought, but then where'd they go. That's when he saw Noa in the corner. STANDING with her walker.
To be clear: Noa had been lying on the floor. The walker was not within her reach, as far we knew, she didn't know where it was.
Noa had a great winter break, thanks in great part to Aunt Paté (and yes, Noa pronounces it much like the liver spread) who came up from Maryland for the week to help up since Mommy was still very much laid up.
BOTHER HIGHLIGHTS: before Aunt Paté's arrival, we celebrated Noa's birthday. She got two "blanket sweaters" - one blue and one brown, and a gold bracelet which she wore for a couple of hours and then put on Electra Monkey (with all the other bracelets) - and it's still there. She also got some more scrunchies with scarves attached, I put a few in her duffle bag.
Of course, Noa is excited about getting back to school too and on Sunday morning was already talking about getting back to school.
(btw: Paté did quarentine before coming up to say with us)
Another quiet, mostly indoor, weekend in the Land of Noa. While Noa seemed to be fine with staying in (as long we promised to keep checking the weather in case it suddenly got warm), she did make use of the occasion of being indoors to make several specific and interesting requests.
During breakfast (which Noa insisted was breakfast, not to be confused with brunch or lunch, which would be followed by chocolate ice cream that she clearly wanted to save for a later lunch-dinner meal), Noa requested that after breakfast Mommy should put snaps on Electra Monkey's feet. Noa sorted coins while Mommy sewed on the snaps.
Noa tested out the snaps by having leaning down from her chair and making Electra Monkey tap dance so she could hear the clicking on the floor.
She, again, wanted to where her pink hat and scrunchie scarf pretty much all the time (except when showering).
All in all, letting Noa call the shots this weekend turned out to be a pretty good thing, and it helped us to get over the hump of not being able to do some of the outdoor activities that tend to dominate her focus when she is home.
Noa enjoyed carrying Mommy Monkey over her shoulder everywhere and insisted on wearing her pink knit cap (which she'd worn to bed - with her hair scarf still peeking out) ALL WEEKEND! She only let me take if off her once, Sunday morning, to brush her hair and put the scarf back in her hair.
While it was a bit out of the ordinary for a Noa weekend, the rainy weather seemed to have a similar sluggish affect on all of us so, so we just decided to roll with it.
This blog is managed by Noa's Mommy, with editorial support from Noa's Daddy.