Our daughter Elsa recently turned 9 years old. A third grader! Crazy. It’s been a wild and, at times, extremely difficult year, due to Covid and remote learning. But we’re hanging in there. She’s grown a ton and has been been making strides in quite a few areas.

When the first really bad reports of Covid hit the news, we pulled Elsa out of school immediately. That was mid-March 2020. Because she has been hospitalized for respiratory issues in the past, and takes a long time to clear a cold, we were – and have continued to be – really cautious. We miss the family and friends that we use to spend time with indoors, tremendously. And this winter has been a doozy. Still tons of snow in Chicagoland.

After about 12 months of Zoom and remote learning lessons, and feeling good about vaccine distribution and Elsa’s classroom’s Covid precautions, we have decided that Elsa will return to school full time on March 1 (this Monday). I know we aren’t out of the woods with Covid, and still need to be cautious, but we are ready to reincorporate school, and the timing feels right. This is how Elsa wears a mask. I have to go around her ponytail with an adult mask, for it to stay. She tries to take it off constantly! But this poncho helps with that, when we are out and about, like on this recent trip to the library.

Vaccine distribution in Illinois is coming along. My husband and I had our first dose of the Moderna vaccine two weeks ago. One of our therapy groups sent us a notification that we could register. I’m not sure if we needed any extra documentation, but we brought a letter from Elsa’s pediatrician that included her diagnosis, just in case an eyebrow raised. It was such a happy day, getting our shots. Giving Elsa this extra layer of protection means the world.

Somehow, some way, Elsa hasn’t slipped during Covid and in some areas, we’ve seen real progress. Her standing balance has greatly improved and (hold the presses!) she has started to initiate steps in her gait trainer. I never gave up hope that mobility was a possibility for Elsa, but I have tried to temper my expectations. Still not sure what the future holds in this area, but I’m excited by the forward momentum for now! (And it feels so good to have excitement about something these days.) This is how she chills while I’m folding clothes or getting dressed.

Elsa has grown so much! She is currently about 50 pounds. She’s in the 17th percentile for weight, for her age, and 5th for height, so we had to let go of her toddler car seat and go for a booster. Our private PT recommended this set up, and it is working great! Does she try to slide through the bottom? Particularly when she has to potty? Absolutely! So I have to cinch it very securely at the waist.

Speaking of bathroom: We continue to see some success with Elsa staying dry, when we take her to the bathroom every 1.5 hours. That’s about how long she can hold it. We tried undies for one day… but are back to diapers. Good news is, we only use about 3 or 4 diapers a day now, instead of 8.

Elsa has started transitioning to a new PODD book for communication. Here’s a picture of how we have transitioned, L to R. When she was 3, we started with the single-location book. Next was 9 location. Then 12 location. And now 20. If you are at all interested in PODD, I could not more highly recommend the courses led by Linda Burkhart. Here’s a link to the info. So many of the kids who have progressed well with the PODD system remind me of Elsa and her communication style.

Our current challenge is spitting. I don’t think it’s behavioral, but maybe because of extra saliva due to reflux? That’s our next doctor’s appointment. (She doesn’t like to swallow anything, period. So while eating orally is out, it’s been helpful with toothbrushing. She spits the foamy bubbles onto a rag, which is kinda cool!) Throughout the day, spitting seems to be how Elsa’s been dealing with the extra saliva in her mouth, and it gets pretty stinky and sticky. Her bangs get crusty, so I’ve been keeping a hairbrush on us at all times. I’ve heard of medicines that can decrease salivation, but I’m hesitant to introduce another med.

That’s a snapshot of things, at the moment. I’d love to read about how your kids are coming along – if you need help posting to the website, please let me know!

 

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