November 2020

What a whirlwind of a month!

Job's October biopsy was cancelled because we were concerned he had a cold as his cough changed and his lungs were wet. He might have!

But his gel injections clearly expired as well. So all month we've been going to various appointments to get a surgery slot for new gel injections. He's actually in a pretty unsafe place swallow-wise. Sustainable for a little bit just because his heart is so stable, but they're working to get a surgery time asap. We're hoping it can tag on to the same hospitalization for his annual heart biopsy (re)scheduled for November 19th.

We don't anticipate rejection but since we now go THREE months between cardiology appointments my anxiety creeps higher and higher the longer we go.

Job is really thriving developmentally and we're so proud of the strides he has made. We're doing PT and SLP via Zoom, which isn't ideal but is working but holding off on preschool for now until we get his swallow figured out.

Here's a picture of him in his Marshall (from Paw Patrol) costume (and another with his beloved brothers):

TWO YEAR TRANSPLANT ANNIVERSARY

Today marks two years with a new heart. 730 days with a fully functional, whole heart, providing adequate oxygenation to all of his organs.

He was barely surviving before transplant. We were watching him waste away, with probably only a week or two to go before it would have been necessary to move into the hospital to begin increasing levels of life support. 

Now he’s thriving. Now he can run. Now he can talk. Now he can play with his brothers. 

But it’s also been two years since another family lost their precious baby and selflessly chose organ donation.

We are so grateful.

Job 1:20-21 “Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, ‘Naked I came from my mother’s womb, and naked shall I return. The LORD gave, and the LORD has taken away; blessed be the name of the LORD.’”

Job 42:1-2 “Then Job answered the Lord and said: ‘I know that you can do all things, and that no purpose of yours can be thwarted.’”

September 2020

THE FALL ROUTINE HAS STARTED!

And I'm really really overwhelmed.

We decided to go back to in person church. They've created a special masked, socially distanced service. 

The boys all went shopping ten days before my birthday and had the hardest time waiting for my actual birthday to give them to me. Ezra has campaigned for about 8 years for Seth to buy me fancy jewels and this year somehow he convinced Seth to buy me a beautiful sapphire necklace!?! I love it! But I'm still surprised.

Ezra bought me a neck pillow because he remembered how much I liked his on our trip. Isaac an umbrella because I don't have one. And Job an electronic dictionary. I don't think of myself as a "gifts" person but I'm so touched by their thoughtfulness. It was a pretty big deal that they all went into the store - none of them have been inside a store since February!!

It's so fun to watch Job become one of the "big boys" and have his opinions and participate in these discussions, like what to get me for my birthday. And to hear him describe why he chose his gift for me. I'm so blessed.

August 2020

This month we went on an epic road trip!

The ultimate destination of our trip was our beloved "MBR" ("multi baby reunion) with Seth's college friends and their wives and children. Over the last ten years that we have done this we've alternated destinations and this year's planned destination was Colorado! Of course, originally the trip was to be in May, but we tried again and actually made it happen this month!

We got special permission from the transplant team to go and we planned our route carefully to try to be as cautious as possible. For the most part it was easy - we were outside! Camping! Already, inherently, socially distanced from people! But certainly we were around more people overall than we have been pre-pandemic.

I was particularly concerned about medical care, as usual when we've traveled more than an hour or two away from Seattle. I had nightmares that we'd get "stuck" at an inadequate country hospital and need a life flight... Certainly hindsight is 20/20 and I'm probably only saying this because so little went wrong on the trip, buuutttttt I'm so glad we went.

I really think this was my very favorite thing I've ever done. We saw so many natural wonders and had such a lovely time together, just the five of us. But it was so lifegiving to see our friends and to see Seth's brother and wife and nieces.

July 2020

We tried to conjure up some pandemic fun this month, but the highlight was a very enthusiastic transplant clinic! Woo hoo! Job is doing SO WELL!!!

Trying octopus!

Fort Stevens was lovely and needs more than just one day there next year.

April 2020

Now that we're two months post-op, I think I can confidently say Job really truly is talking more! His voice is so much clearer and stronger. He has a huge vocabulary and it's as if all these words that had been stored up in his head the last 2-3 years are now just pouring out!

We've been really strict on our lockdown. We haven't gone anywhere or seen anyone. Walmart Grocery Pickup is really struggling to keep up with all the new orders, so that's been inconvenient and has meant a shopping trip or two. It's weird to mask and wear gloves and sanitize everything. Maybe it's all unnecessary but we're wanting some time for things to settle before we discard such precautions.

We've gone on a few little family excursions to find isolated places out in nature to get a break from the house. It's been pretty difficult, actually! Favorite haunts are overrun with people, so we've had to go out rather far.

Art class has moved to Zoom, which has been quite the experience. It's helped us to remember to pray for all of our friends who are struggling with their online school experience.

I keep finding weird selfies on my phone courtesy of Isaac.

And I picked up cross stitching again!

Just the smallest bit of sunshine inspired the boys to pull out the hose and pools.

JOB CAN RIDE HIS TRIKE!!!! Oh, I wish we were still in weekly PT to show off this long-fought-for skill to Miss Kendra.

We were really really sad to miss out on Job's elaborate birthday plan: everyone dress in green and go to a park. (He was really inspired by Delaney's pink party.) But sweetly his cousins and aunts and uncles all dressed in green and sent him photo/videos birthday wishes and his brothers decorated a cake for him.

March 2020 Update

 Wow, the world changed. I'm still in disbelief and really, I think most of the world is.

We bought a new van just a week before Job's hospitalization and it felt a little silly to have it sit in the parking lot all week, but how much more so now that we're on lockdown and hardly going anywhere?

Well, we did go up to Lake Bosworth and we have gone on two Sunday afternoon drives after watching the sermon online?!?! What is this world??

We've done quite a bit of baking and so many walks around the neighborhood. Seth has been playing some online games with the boys, like the old Oregon Trail game and some escape room games. And we've been sending and receiving quite a bit more mail!