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| This was most of trick or treating. Watching from the window. |
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| Joy wins over fear! |
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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| This was most of trick or treating. Watching from the window. |
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| Joy wins over fear! |
Life always seems to be busy, which is why there's some time between posts. Let's see what updates I have from the past several weeks ...
Broken Toe/Foot This healed well, thankfully! He got the all clear to spend some time barefoot at his final checkup. We were advised to have him wear his brace and shoe for most of the time to protect it through November to make sure it's fully healed. This was great news, though, because it allowed us to return to our own bed and allow him to sleep by himself for the first time in 2+ months.
School He loves school. He loves his friends, his teachers, gym, music, recess and pretty much everything about school except following directions or doing what he doesn't feel motivated to do. (Not that atypical for a child, now is it?) He got to venture to a wildlife preserve on a field trip the other week, and he was ecstatic to ride the bus!
Shoes Ugh. Buying shoes that fit over his AFOs is the worst. We've used Billy Shoes for several years, and we initially had really good success with them. But the last year, he's destroyed them almost faster than we can buy them ... certainly faster than we care to buy them. In fact, the last pair we got took less than 3 weeks for holes to be worn into them. We spent more than an hour trying on everything we could find (and suggested by the sales staff) but couldn't find anything traditional that fit over his AFO without looking like clown shoes. We finally ordered Friendly Voyage shoes, and we're optimistic. They seem to be good quality (as I'd hope they'd be for the price), and they fit on his feet like a dream. The only problem is we have to rig up something to ensure the zipper stays up because it tends to work its way open with all the movement Teddy makes, and he's stepped out of the shoe once.
Halloween Teddy had a great Halloween, making up for missing last year due to COVID. He went to a fun Halloween party his friend hosted at a bouncy house and had a great time. We went to a neighborhood party, and he got to do the limbo and had so much fun, once he got over the different costumes. He went trick or treating as Handyman Hal and loved visiting everyone, plus getting candy. It's interesting because he won't let you carry his bag, and he's not the least bit coordinated, so everything spills everywhere. We resorted to frequently emptying his bag (after every house or two). Oh, he does not care for scary costumes at all. One house had someone dressed up as a decoration who then scared kids, and Teddy was done after that with anything that looked remotely scary or suspicious.
And the final randomness in this post is that Teddy got a paint your own cookie to decorate (since his mom runs a bakery after all). Here's how it started:
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| There's already a bite out of it, but he's actually painting. |
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| No further painting was done. Only eating. |
Whelp, the creepy crawly COVID virus found us this Halloween. After 2.5 years avoiding the virus (by taking rather extreme precautions), AJ came down with COVID a month ago. We isolated him to his room, sanitized everything and came away with the rest of us healthy. Fast forward a month, and Teddy came down with COVID.
His case came on suddenly, spiking a fever in the middle of the night. My gut instinct told me to check on him after debating for about 20 minutes. See, the tough thing with Teddy is that when he's awake at 3 a.m. and healthy, if you go in his room, he instantly thinks it's time to be up for the day and will not go back to sleep. But if he's sick, you need to check on him ... so it's like a game of Russian roulette of whether you make the right call. Given that his temp was 101.8, my gut instinct was right.
We went right to work on the medications and trying to sooth him back to sleep, without a thought that it was COVID. When it was more of a morning time, say 5:30 a.m. and he was up and ready to play once the medicine kicked in, Dave COVID tested him. The poor kid came back positive so fast that Dave tested him a second time, thinking he had done something wrong.
Nope, Teddy just had COVID. And by that time, he had already passed it along to Dave, who tested positive 2 days later. As of writing this, I'm still a negative Nancy, although I'm quite certain I'll be testing positive soon given the mild symptoms I have.
Trust me, we did our best to mask around Teddy, sanitize and such once we knew he was positive, but it's next to impossible given his lack of personal space, lack of comprehension, lack of personal skills (as in we get to wipe his nose or he rubs his snot on us as he flops on us - that's a favorite!) and don't forget the sneezes right into your face, even if you're wearing a mask.
The good news is that Teddy is several days in and doing well. We've worried about this for literally 2.5 years, and thankfully it's nowhere near the worst-case scenarios we imagined. (It gets old worrying about every little cough for 2.5 years, it really does.) He's hopefully past the fever stage for good and is not overly sick, although he clearly still doesn't feel well.
So we're getting lots of Teddy time, and it's interesting to see what runs through his little mind. The other day he gave Dave shoes to put on, ran and grabbed his swim bag and went to the vehicle. Dave still isn't quite sure where they were supposed to go swimming ... Today he did the same thing, except he grabbed a football. So they ended up running around with a football at an empty park.
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| He looks like he actually is playing football. |
The worst part - aside from the worry the first day with the fever - was that Teddy missed Halloween this year. It's his favorite holiday. It's not about the candy for him, although he does indeed love candy and wouldn't let go of his bucket last year once he realized it was full of candy. What he loves the most is that he's allowed, in fact encouraged, to run up to strangers' houses. It's the best day ever for him, and we love watching him bask in his glory. So it's tough to sit out this year, but the silver lining is that he doesn't realize what he's missing. And AJ got plenty of candy to share with the entire family (and he should hopefully be safe this time around since he just had COVID).
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| Wendy with her beloved Peter Pan and his Shadow. |
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| This was the few moments Teddy was actually with the kids. I'm not creeping behind him. Oh wait ... |
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| So eager to keep up with the kids! |
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| So cute and so easy to redirect to the next house! |
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| Dorothy and her tornado. |
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| If you look closely, you should see a house in the tornado. |
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| The tornado is on the move! No stopping him! |
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| LEGO Nexo Knight Clay (AJ) and Teddy the Tornado trick-or-treating. |
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| One of the few pics of us in costume with Teddy's hot air balloon. |