Thursday, October 12, 2017

I LOVE LISTS... or, what we've been up to

I woke up this morning and had to write. And it had to be a list. Why? Because there's been too much going on and, well, I love lists. In no particular order:

1) I blinked and he started second grade.

Jack is still so excited to get up in the morning for school. Sometimes he'll hang out by the door for an hour asking to "please take me to school already!" He loves his classmates. He is growing and developing at his own, Jack-pace. I love seeing his little school community and the place where he feels so safe and comfortable. Now, who knows what he's up to for 7 full hours, but he must like most of it. He goes in and out of the mainstream classroom and spends a lot of time in the resource room. My favorite part of the day is picking him up. I love to see his big smile and pray he always loves school this much.

2) The new Jackpants book was published! Thanks to all the book sponsors and those who purchased individual books.

A really fun day was reading the new book to Jack's classmates. They loved the storyline and I think really understood the beautiful message. Because of the generosity of our sponsors, each child in the second grade got to take their own copy home. After reading, Jon opened it up for a little Q and A and you guys, it is my favorite thing in the world. Kids are hilarious. This time around they were really interested in how Jon comes up with his stories, how he illustrates them, and how publishing works. Last year they were more interested in Jack and why he is the way he is. But this year is such a testament to these books and what being classmates and friends does for the kids understanding of disabilities. They all know Jack now. They understand him, that he is disabled, and that's just who he is! The power of these books and the message they share have made such an impact.

3) I've written about preemie teeth so many times. Long story short, because of NICU medications and interventions, a lot of preemies have dental issues. For Jack, this has manifested in pretty bad oral aversion, being very afraid of the dentist, and not letting us get a good look at his teeth. So yesterday we did what many of you have done. Jack went under general anesthesia for a deep teeth cleaning that gave his pediatric dentist the opportunity to check out his teeth closely. Besides emerging out of surgery with sparkly (like a diamond, ya'll) teeth, he also had some baby teeth yanked. AND TO OUR SURPRISE, the dentist saw some pretty fantastic, strong teeth. No cavities or decay. Who knows how this happened, but we'll take it. Gosh, the things we do for our preemies. How is it normal to be at the hospital so much? That's just our life. Sorry for scaring my insta friends by posting a hospital picture. I forget that our life is pretty strange and I didn't give enough info! HE'S FINE. HIS TEETH ARE LIKE SPARKLY DIAMONDS.

4) Another big deal in Jack's life came in the form of some fancy new AFOs (ankle foot orthotics). Let me just tell you - he HATES the casting process. This is when he has to sit extremely still while they plaster up his feet to get perfect measurements. We travel 3 hours for this appointment. Those measurements are then sent to the AFO factory (or something like that) and perfect new AFO's emerge. We drive back and pick them up!

We always go with boring white for Jack's AFO's. I know there are super fun patterns and designs, but Jack doesn't seem to care. So we get them to match his white socks. Are we boring? I think that means we're boring.

5) I guess I should tell you! Something clicked around August and Jack decided that he remembered how to walk. It's been almost two years since his debilitating hip surgery and one day this August, he just decided to walk by himself out of his bedroom. Yes, I did have a minor heart attack seeing him emerge from his room, suddenly standing up and walking, but since that day he's walked unassisted everywhere. I have no clue what clicked, but I knew surgery and recovery would be long. I did not expect it to take almost two years, though. Much like walking independently the first time around, he just decided he was confident enough to do it. So many things for Jack are him deciding, on his own timeline, that he is ready. Sure, he does physical therapy, works really hard, and even when his body is physically ready, it usually it boils down to this: Jack has to make up his mind that he can do it.

5) ABLE Montana! You guys. After three years of really hard work, Montanans can now open their own ABLE Accounts. This is something Jon has been working on during his free time and we are so happy to share that this new opportunity is finally available. To celebrate we cashed in Jack's piggy bank to put in his very own ABLE account.

Montanans with disabilities can now save money without affecting their eligibility for benefits. This is such a big deal for families like ours.

6) Jack really likes jumping and bouncing around on the bed. He's also pretty uncoordinated. That perfect mix resulted in the most epic flip out of the bed and a black eye that made Jack look like he came straight out of a bar brawl. I thought it was cute. There's something about typical childhood experiences that remind me my kid is still just a kid. He gets black eyes like the rest of them and he didn't even have to go to the hospital!

7) I'm pleased to announce that, FINALLY, we seem to have found the magic to help Jack gain weight. In the past few months he's gained 4 pounds. For a kid whose weight was stuck for years, this is a big deal. I'm here to tell you that we owe his weight gain to one thing: his g-tube. Yep, the tube we all love to hate. The tube that has saved his life so many times. That darn tube that we have fought with and agonized over for so long. Jack is now 100% tube fed and that has helped him gain weight. I don't know if he'll ever be a by-mouth eater again. But I know he's gaining weight and that's a big deal. I also have to shout out Real Foods blends for being key to this tubie diet. FOUR POUNDS!!!!!!!

8) And finally, this. Because Baby Jack still has my entire heart.

P.S. I don't write here as much these days. Why? Because, like, I'm on Instagram every day. WHY DON'T WE FOLLOW EACH OTHER YET?? (it's private because of creepers, but I love following all you non-creepers out there)

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honeybee said...

I just love reading about Jack and his progress and what he's been up to! I've only met your husband in person but I feel like I know Jack and you personally! Thanks for your inspiration. It is more helpful than you know!

Gina Newby

Linda ostermiller said...

Beautiful! Thank you Jessi. You all three are an inspiration and a blessing. Love you all, Linda Ostermiller (cousin)

anna said...

So glad to read an update. I'm not much of a social media person but I did ask to follow you on instagram.
I've been following your story since Jack was a baby. So thankful so see the progress he has made. My babies are grown and I have 3 little precious granddaughters. The first two were premmie twins who are now 5 years old and thriving.
A great way to start my morning by reading about Jackpants!
Blessing to you all!

Jessi said...
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