Fine Motor Finess

 Ya'll, I had no idea my child could do this.

I came upstairs to grab my lunch as Teddy was getting ready for therapy. I watched in amazement as Teddy put on his first brace. Then I pulled out my phone and videoed him putting on his second brace. If you've never put on SMOs before, they're a bit tricky for someone with typical fine motor skills. 

And I didn't capture it on video, but then he did put on his one shoe my himself. He has Billy shoes now, so he can actually zip them up entirely by himself with just a little bit of assistance if he gets stuck. He made me put on his first shoe for him because apparently I'm his servant. That's what he's led me to believe that he couldn't put on his braces and shoes, yet he very clearly can do it on his own with some verbal prompts and minor assistance.

I wonder what other secrets he's keeping from me ...

Our New Babysitter

We've talked at length about our wonderful childcare providers. I think they prefer the term "nanny" as their job title, but they're our unofficial adopted daughters.

But this month, we introduced a new babysitter for Teddy. I stumbled upon this sitter by accident, finding a random YouTube video of something called Blippi. I was mesmerized. No, it's not such quality programming that it entranced me, but it held Teddy's attention. That's why I was mesmerized. He'll dance when music comes on TV and watch it occasionally, but we've never found anything that truly holds his attention and keeps him in one place. 

And since then, Teddy has been requesting TV and quickly became obsessed with Blippi. We've switched it up in the last week or two with some ChooChoo Bob and good old-fashioned Thomas the Train. (Let me tell you, the episode we watched today about not getting caught up in your imagination with worry because it just creates more problems was a message straight from Thomas to my anxious heart.) He really likes trains, so he'll even watch video footage of trains. Oh, and he enjoyed some tractor pulls world championships we randomly found on TV.

But if you really want him to sit and focus on TV, Blippi is hands down the most magical. He'll run and sit on the couch to watch it, even when he's into causing all sorts of trouble and thinking he's hilarious. I know we shouldn't use TV to babysit Teddy, but by golly sometimes we need a break from his non-stop action. The other amazing thing about this is that I recall Teddy not being able to focus on anything for even a full minute. So to sit and watch TV for 30 or more minutes is downright amazing!

Never heard of Blippi? Remember Barney? Way different, but just as annoying. Be glad you don't know him, but he's fast becoming my best friend.

5 People

Five people.

That's how many adults it took to restrain Teddy while the poor nurse practitioner put 5 stitches in his chin. I think that was everyone working on urgent care on Christmas morning.

Nice chin gash on top of his prior chin scars.

And then later that week, he fell while playing near the treadmill. AJ, Dave and I all arrived at the same time to find him in a pool of blood. At first we thought he perhaps had cracked his chin early, but the stiches held. Instead, he had built nearly through his tongue.

In case you don't know, tongues bleed a lot. (All head wounds do.) But tongues heal remarkably well. We know this from prior experience since Teddy jammed a plastic hanger nearly all the way through his tongue a few years ago. We took him to urgent care for that, who looked at it and promptly sent him to the ER. ER looked at it and said, "Eh, it'll heal." 

Since this wasn't nearly as bad as the coat hanger incident, I wasn't too concerned. I still did call the nurse line to discuss the situation. I said that if they wanted a peek at it, they'd be able to see it when we came back to get his stitches out. *Insert facepalm emoji here.*

Moral of the story? I'm not sure. Heads bleed. It takes a lot of people to restrain Teddy. We're stellar parents. 

MCAHSS1 vs. CDG-PIGN

Teddy's initial diagnosis was Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. That mouthful was a lot to remember, but it was ingrained in my mind from the first genetics appointment. Since then, we've heard a couple times (at the National Institutes of Health and at the Congenital Disorders of Glycosylation conference last year) that they are changing the naming structure to refer to the affected gene name. Since then we've been calling his diagnosis CDG-PIGN (although I think we're supposed to call it PIGN-CDG).

This came to mind again when new families are joining our Facebook group because some of them are still getting the MCAHSS1 diagnosis, the acronym for the full name. I think the switch with naming happened a few years ago, but it's clearly not universal.

I simply wanted to revisit this from an education standpoint and to put it out there for those searching for either diagnosis to hopefully find this nugget helpful.

Parenting Challenge of the Moment

When you think about becoming a parent, most people envision sweet little babies, cuddles, visits to parks and happy memories. There's plenty of things that you can't fathom. Stepping into a room with poop all over, including the door knob, would be a good example.

I would take that that any day over the daily tears this week from my older son. Over the past year, he's become increasingly sensitive to even the word "seizure." This week his anxiety has peaked (oh my goodness, I hope it can't get any worse!) as his school prepares to make masks optional starting next week. His thought process is:

1. Without a mask mandate, I'll be one of the only ones wearing a mask.
2. With COVID at record-high levels in Wisconsin and the removal of the mask mandate, I'm likely going to get sick with COVID.
3. If I get sick, then Teddy will get COVID.
4. Teddy will have seizures if he gets COVID.
5. Seizures can be life-threatening, so Teddy will die.

For the love of my sanity, how do you parent through that? 

Last night I finally suggested he talk to the counselor at school today because she might have better resources to help him. Today I got the phone call from her today to brainstorm together because he was so stuck in the emotional hijacking of this thought train that she couldn't help him redirect. Well then ... 

So she's going to try to reconnect with him tomorrow when he's not emotionally hijacked to see if she can create a plan with him to help him before he escalates. She'll update me, and we'll go from there. Obviously we know therapy is an option to help him work through this, and we've already done therapy last year to navigate some of the challenges of COVID. But we know that referrals and appointments will take time, so we're hoping she can assist with some short-term relief. 

Now ... I hope I didn't curse myself and wake up to a poop-filled room tomorrow.