It's More Than an Accordion

First, did anyone else grow up with an accordion in their house? No? Just me (and my brother I suppose). My grandparents enjoyed polka music, so at some point a junior accordion made its way to our house, which I was supposed to learn how to play because I was the musically talented one. (Not quite, but my parents were still proud of me.) I also received a toy accordion that fits into your hands to play as a gift, which was rediscovered by AJ during one of our recent visits to the family farm.

AJ loved the accordion and monopolized the use of the accordion that visit, but Teddy got his turn when we were there for Thanksgiving. He thought it was the coolest thing that he could make music with it and did quite well, as you can see in this video.

What floors me, though, isn't Ted's ability to play the accordion. It's the fact that he gets into a standing position while holding the accordion with both hands, which means he didn't use anything other than his core and other muscles to stabilize himself as he stood from the floor. I watched the video several times just amazed at how easy he made it look, when in reality that's as challenging as most people doing backflips. Heck, Sunday night I couldn't even do that! (Granted I had run 13.1 miles that day, but still ...)

Those little things catch you and show you the tremendous progress that Teddy has made. With his sheer determination and effort, I have no doubt he'll continue to amaze us (and drive us crazy at the same time.)

And, yes, I already bought him a toy accordion like the one in the video for Christmas. His grandparents are giving it to him because that feels better than us giving him such an obnoxious toy.

To Mom ...

Sheesh, it's been a busy month. It seems like November is a whirlwind every year. We go from Halloween to deer hunting to Thanksgiving to Christmas everywhere. I've been busy with other projects around the house, prepping for the holidays, which is why I've been absent nearly two weeks on this blog despite my efforts to post at least once a week.

The other week, though, I shared this picture on my Facebook page:

Someone posted it in our CDG Facebook group, and I asked permission to share it because it resonates completely with me. The only thing is that I don't think of Teddy as a superhero ... he's just Teddy. He's damn persistent and resilient, both of which are excellent qualities when everything in life is harder for you and takes you much more effort than most people. (His teacher might disagree when the focus of his persistence is the ladder that was brought into his classroom yesterday ... Dave and I both started laughing as soon as she said "ladder" because we could guess Teddy's reaction.)

This captures life, though. Immense pride and incredible sorrow. Tremendous gratitude for blessings and chills that run through my body when I think of last December's seizures. Wishes for normalcy and acceptance of what is reality ... although that one is always still the hardest for me.

Diagnosis Day

It's been three years since everything and nothing changed during a 3-hour generic appointment.

Receiving an incredibly rare diagnosis was a complete shock. Honestly, getting a diagnosis in and of itself was a surprise. We had spent two years wondering, worrying and getting normal test results for a child who was obviously not normal. The odds of getting a diagnosis with this test were 25 present, and this was our last option for answers.

Yes, that's right. If this test was negative, our next step was to wait another 2 years or so for more genetic discoveries. Then they'd re-run the same incredibly expensive and time consuming (think 3 months) test hoping it would then trigger an answer.

Even though it wasn't the answer we were expecting, I remain grateful we got answers. It's allowed us to find out tribe, participate in research and move forward with the continual process of acceptance. It's a lifelong journey, but I'll take that over the alternative considering how blessed medical research was and still is regarding CDG-PIGN.

Best Brother

We've often said that AJ is already a better person than we will ever be, simply because he's growing up with a brother with a significant genetic disorder. Teddy's CDG affects every aspect of life for our family, adjusting our version of normal.

AJ has spent 5 years of his life with a brother who has never spoken a word to him. Yet he's learned to understand Teddy's wants and needs, even telling us at a young age that Teddy wanted a drink because he saw Teddy staring at his own cup as he drank. He may not understand everything Teddy tries to communicate, but he's a pretty capable translator.

Not only that, but he interacts with Teddy just like anyone would with their little brother. He talks to him, plays with him and headbutts him more than I'd like to admit. He treats Teddy like a normal human being who needs a bit of extra assistance with things. It's been fantastic to see the times he interacts with others who may have a disability in the same way because it's simply how life is ... for AJ at least.

If you need proof that AJ is an amazing brother, then check out the thank you he wrote Teddy at school last month. I'll translate below in case you're not skilled in the art of reading first grade writing ... of a future engineer.

This is tucked away in Teddy's memory box.

Dear Teddy,

Thank you for being the best brother I've had. You will allwas (always) be my favorit (favorite) brothr (brother) I allwasa (always) had.

Sincerely,
AJ, yoru (your) best brothr (brother)

Happy Halloween!

All right. I know Halloween was yesterday, but we were too busy having fun for me to share last night. I know a number of children with CDG-PIGN are enthralled with Halloween, some to the point of asking about Halloween for months on end, and I believe Teddy is going to follow in their footsteps. There's something magical and inclusive about this holiday that is perfect for my little social butterfly.

Teddy absolutely loves people. If you smile at him, he believes you are his friend. He will even take strangers by the hand if they smile at him and interact with him. He's extremely curious as well and wants to check out our neighbors' houses and particularly garages when given the opportunity. 

So eager to keep up with the kids!

So a holiday where you get to meet a whole bunch of people and go right up to their houses is ideal for Teddy. We met up with one of AJ's friends in her neighborhood and started trick-or-treating with her neighborhood friends. We stayed with them for quite a while, although we kept dropping further and further behind because AJ couldn't run in his costume, and Teddy's run is a fast walk. That bummed AJ out, but Teddy had the time of his life.

When Teddy saw the front door where he was supposed to go, he made a beeline without any regard for ditches or driveways. He took the shortest path, fell quite a few times and picked himself right up to keep trucking up the house. Then he was more interested in trying to see if he could go inside the house than taking any candy. I carried his bag for him, and he managed to put a few pieces into his own bag, which is a great use of his fine motor and motor planning skills. There were a few open garages that required a bit of steering to keep Teddy from exploring, but he had such smiles and amazement on his face that he was able to go visit all these people. 

So cute and so easy to redirect to the next house!

Costumed characters can be a bit dicey for Teddy, but he was remarkably fine with everyone at Halloween. There were a few costumes that seemed to intrigue him, and none scared him. I think the fact that he had such freedom to go visit people wiped out any concerns about costumes.

I loved seeing his independence that he would walk, or run, toward houses with the other children. I imagine future costumes and years where he perhaps uses his talker to say "Trick or Treat" and "Thank you." Wouldn't that be amazing?

As for this year, it was perfect. We had amazing weather, the nicest I can remember in years. We spent nearly 1.5 hours trick or treating, with Teddy doing an incredible amount of walking with some breaks in his chair. Then we came home to have our neighbors over for margaritas and cookies, which seems to be the start of a new tradition. It gave the kids an hour to wind down after trick or treating and us adults the chance to socialize ... all in our house where Teddy has relatively free reign.

And what was Teddy for Halloween? If you couldn't tell from the pictures, he was a bull in a china shop. At some point, I am confident Teddy will exercise some strong opinions about Halloween costumes, but for now, he could care less. So I will continue to have my fun creating costumes that are made to suit Teddy's personality.