Perhaps we need a photo of all our kids together, where you can see all 4 of them! |
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.
Friday, April 30, 2021
A COVID Blessing
Wednesday, April 28, 2021
Ten Minutes with Teddy
"Oh, hi Mom, I'm just chilling up here." |
Friday, April 23, 2021
Toothless- Perfect Timing
Teddy has lost about a half dozen baby teeth. In the course of losing those teeth, he's actually lost about half of them. He most likely swallowed them. It's not that we don't check for loose teeth and attempt to pull them. We managed to pull his first two baby teeth and were quite proud of ourselves.
Then he ate the next three. Whoops. I swear, one of them we checked first thing in the morning. It was loose but not loose enough to pull. By dinner, the tooth was gone forever.
He's had a loose tooth for a month. It's been wiggly. We've tried to pull it. No luck. It's gotten even wigglier. Still no luck.
Last weekend I took Teddy for a bike ride on a trail in a nearby town. When we arrived there, I looked at his bloody grin and was certain he'd lost yet another tooth. However, it was my lucky day, and the tooth was still hanging on. One quick pull, and I retrieved the tooth before it was gone forever.
It's not the end of the world if Teddy swallows a tooth. Heck, even AJ did that once when he thought it was a nut in his chex mix. Weirdo. It does feel like victory, though, to have the tooth for the tooth fairy. Granted, we still don't let Teddy put his teeth under his pillow because who knows what would happen to the tooth. We left it in a bag outside his door, and he was rewarded with a $2 bill in the morning.
A bloody toothless grin is still cute on him. |
Friday, April 16, 2021
Unnecessary Tears
Yesterday I witnessed Teddy cry for 15 minutes. He cried. He sobbed. He had snot running down his face. He crumpled in a heap, unable to even stand up because of the misery.
The reason? He didn't have a coat and shoes on to go outside with his brother and dad. I told him that he needed to put on a coat and shoes and that we could go outside then. But he was already inconsolable.
I even set his shoes right by him. Crocs, easy to slip on in less than a minute. But he couldn't set aside his devastation of being left out to see that he could be included as soon as he got dressed appropriately.
I've been trying to spend more time in prayer lately, and watching this moment struck me. On one hand, I wanted to physically get him dressed and take him outside, where he'd be instantly happy. On the other hand, he had everything he needed to do it himself. That made me wonder how many times have I been absolutely miserable or so caught up in something that I don't see the solution that's right there, the path forward? How many times has God wished he could put my crocs on me, ease me into my coat and walk with me through the door to happiness? How often am I so stubborn and stuck in the moment that I can't take the simple steps to move forward?
It's almost laughable, in a pathetic and pitiful way, when Teddy crumbles into a mess over something so ridiculous when the solution is so easy. Yet, last night struck home for me that I'm probably that crumbled mess more often than I'd like to admit ... even when my crocs and jacket are right there.
Tuesday, April 13, 2021
Sharing with a Velociraptor
The other night we had grapes for supper. Teddy was apparently starving and shoveling food into his mouth faster than he could chew. (He's at risk for choking, but he just doesn't realize it.) I grabbed an egg carton and put a single grape in each hole. That slowed him down somewhat, and it often works until he dumps the carton onto his plate. And I just got sidetracked researching slow feed bowls for dogs ... there's a lot of parallels between Teddy and a puppy, so why not leverage that?
Anyways, the other night, Teddy was apparently too hungry to demonstrate any self-control, and he stole Dave's entire serving of grapes. He was so quick, determined and fierce that we joked he was like a velociraptor. Dave simply went and got himself a second serving of grapes. He set that on his plate, picked up a different piece of food, and the grapes were gone ... again. Teddy had snatched them in a second.
It's frustrating and challenging because we need to establish boundaries that stealing food isn't acceptable, yet he's so quick and determined that trying to stop him results in potentially getting hurt or the food destroyed. I know we need to do better, so I asked him right away if he could share the grapes with Dave.
Teddy responded by immediately plopping a single grape on Dave's plate. I couldn't help but laugh. It was squished, so Dave rejected his offer to share. But Teddy heard my request, comprehended it and shared what he felt was appropriate (a single grape after stealing probably 20 or more). The comprehension is there, but we clearly need to work on the communication and impulse control.
Hey, I could say the same about myself and impulse control when it comes to food ...
Tuesday, April 6, 2021
Easter at the Land
We spent Easter weekend at our land, enjoying unseasonably warm spring weather. We did this because we aren't back to attending church services in person yet due to the pandemic. In thinking back at our favorite Easter memories, hands down our favorite was Easter in Yosemite. Although our meals were wraps and easy mac in the microwave, it was easily our best Easter ever with a modified egg hunt in our room and a day spent outdoors in the wonderful creation, hiking and enjoying nature. We wanted to capture that closeness to our faith that comes from time outdoors, so what better place than our land where we spend most of our waking hours outdoors?
Teddy really enjoys the sandbox. |
We were blessed with weather that felt like summer, so that made for an enjoyable weekend. We did a few chores, some of which are actually manageable with Teddy. For example, he loves tractor rides, so he assisted Dave in tilling the land for our garden area. Other chores might take more effort with Teddy, but it's easier to entertain him at the land with Ranger rides, tractor rides and simply letting him run.
One of the bittersweet moments was what I'd call one of our last family hikes. Hiking is one of my favorite things to do, and we've managed hiking on all our vacations through the years, whether I was pregnant, we had toddlers or young children. AJ has learned to hike on his own and does quite well, as long as it's not sunny or hot, you have snacks and he can play imaginary with you. Teddy rides in his chair for the hikes where the trail allows, which isn't really hiking in my definition, but I'll take it. He's also capable of walking for short distances, but it's a challenge often to keep him heading in the right direction. He also collapses to the ground if he doesn't want to walk, which makes it challenging to get him back to his feet, or in his chair or in a backpack carrier.
This was a picture break on the hike uphill. |
He's also ridden in backpack carriers since he was a baby. We're now on our third carrier for him, each larger to accommodate his growing body. He still fits in this carrier, but he's a heavy load. He also throws his weight, just for fun, and he can be downright ornery when he doesn't want to ride. That was the case on our hike this weekend, where he was constantly verbalizing unhappy sounds, flinging his weight on purpose and collapsing to the ground instead of walking when we let him down. Even though he was crabby, I still enjoyed the hike and cherished it because I know I cannot continue to carry him up and down the sides of mountains, hills and what I'd call fun trails. He's simply too big that it's not going to continue to be safe for me to carry him for anything more than short distances. That's a tough thing for me to accept, especially because I still can physically carry him (because I'm really stubborn).
The Easter bunny should have "hid" Teddy's basket on the tractor. |
We enjoyed Polish sausage, bread and asparagus on the grill, along with other snacks and treats for our Easter meal, so it was an upgrade from our Yosemite meals. The boys had baskets hidden by the Easter bunny, who happened to bring Dave and I giant soaking squirt guns and much smaller ones for the boys for playing in the river this summer.
All in all, it was a memorable and peaceful Easter. We hope your holiday celebrations were the same.