Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Teddy’s Make a Wish trip to Disneyworld

It was super awesome!

I’m posting a few pictures here, but here’s the link to the album on Flickr if you want to see more. Not too many more, but a few more.

I’m working on a post with tips for Wish families.

We had a blast. Teddy had fun, Genna had fun, Wally had fun. I had fun. Randy had fun. We all had our frustrations, too, and it was far, far too short, but it was fun. And tiring!

Genna Sophia

Teddy Pooh Friends

Carousel

Dumbo

Cars

Mickey

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Okoboji

I misspoke in an article I wrote a while back and said we hadn’t been on vacation since Teddy was born. I managed to space off Okoboji when he was 6 months old. We usually go every year (we have a timeshare) but skipped last year. The kids were excited to go back this year. And even though it’s at a lake, with a beach, and the beach is sort of the main activity, and Teddy can’t go in the lake, we all had a great time. 🙂   (Lakes are generally off limits for transplant kids. Too many nasties.)

Beach

We were hoping he’d play in the sand and not really notice the lake that much. Ha. hahaha. That didn’t work out.

Beach
After 10 minutes of crying about wanting to get in the water, Teddy decided it would be OK to go for a walk around the docks with mom. He was annoyed mom make him hold her hand.

Beach

There was more crying and attempting to jump into the lake. Then he discovered the wheelchair ramp dock, which was super awesomely fun.

Beach

He was watching his siblings frolic in the lake. I was afraid he was going to start throwing a real honest to goodness tantrum. He didn’t.

Beach

Gross. She got out of the lake, then laid in the sand while dripping wet and proceeded to cover herself.

Pool

This is the outdoor pool, and Teddy really just wanted daddy to hold him in the water. He started getting sleepy and had daddy hold him cradle-style and just float around in the water. I thought he was going to fall asleep, to be honest, but he didn’t.

Pool

Genna is far more timid about the water, but was very brave and got to the bottom step by herself.

Pool

This the indoor kid pool. Teddy is NOT timid about the water. He was like, “oh, water up to my armpits? Ok.” He had a really hard time maintaining his balance and slipped under the water several times. No biggie. I mean, I was right there and fished him out, but he was totally ok with it. That said, he was not interested in anything that did not involve his feet on the floor of the pool. No floating. No me pulling him by his hands. No floating on noodles. Just standing and walking.

Pool

Genna finally worked up the courage to use her pool noodle to float with without keeping a foot on the bottom. She wouldn’t go in the shallow end of the big pool, but did kick around the kid pool quite a bit.

Chalk

Genna’s butterfly.

Chalk

Teddy preferred to draw on the deck.

Chalk

And Wally.

Chalk

More deck.

Sidewalk Chalk

Beach

This day at the beach was better because Genna stayed with us and played in the sand for a while instead of going in the lake right away. This picture shows Genna making a sand castle and Teddy appearing to be minding his own business and playing on his own. It’s all an act.

Beach

He was just waiting for an opening to knock Genna’s castle down. He can’t think of any reason anyone would build anything unless it was so that he could knock it over.

Beach

What?

Beach

Mini Golf

Wally got a hole in one playing mini golf.

Mini Golf

DSC_0149

Teddy threw his golf ball in the bushes and then decorated the sidewalk.

 

Last time we were at Okoboji, I was pumping all the time, trying to keep up with his exorbitant needs. The one time I took him to the pool, he basically hated it, everyone in the area stared in shock and horror at his scarred body with the PD cath, Gtube, port, and dressings, and I had to do a sterile dressing change as soon as we got back. In fact, I had to do several sterile dressing changes during our trip.

It was so nice this year to not have to do sterile dressing changes!! And to not have the horrified stares from people. People still stared, but the look you get from people who see a Gtube (though they likely don’t know what it is) is markedly different from the look you get from people when they see your 6 month old’s little body absolutely covered in hardware and bandages.  And yes, screw them, but even so… I’m not usually one to let the looks from other people get me down, but that was tough to take.

Cutie Pie

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Kidney Walk photos

You can see Team Noncomformist here trying to blend back into the group, lol.

This is the large group. We were in the front at one point.

Team Teddybear!

 

 

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Kidney Walk

The Central Iowa Kidney walk was yesterday and Team Teddybear was representing! Technically, the team was Team KIDney Warriors, but Team Teddybear was the only component of the KIDney warriors to have anyone there.

This year’s walk was much more of an “event” than the first walk we went to, which was awesome. It was at the Fairgrounds, and though the route could have been more scenic, it wasn’t bad and it was a lovely day. I think they need to put a transplant recipient in charge of Germ Control for the event, though, lol. Evidently Team Teddybear should be called Team Nonconformist. I’m not a huge fan of crowds, nor of walking from here to there and back for no reason whatsoever, so when they told everyone to move from where we all were (literally, everyone) to another place a few hundred feet away to release balloons (humorously, directly into a tree), many of us stayed put. For one, many of our kids weren’t about to let their balloons go. For another, we were happy where we were, and since we didn’t plan to participate in the balloon release, we thought remaining where we were was a perfectly acceptable choice, and actually allowed for better viewing of the balloons. I didn’t realize some guy on the loudspeaker was yelling at us to come join the rest of the group. But I would have probably ignored it anyway, lol. We were fine.

Kidney Walk
Balloon Release. See? Better pictures from over where we were.

Kidney Walk
mmmmm…yogurt

Kidney Walk
My sister drove over from Omaha and my cousin’s wife Heather and her son Nate drove down from Alta.

Kidney Walk
Teddy and his donor Tiff. Wish we would have thought to take pictures before the Walk, when he was still awake, lol.

Kidney Walk
Awkward.

Kidney Walk
When we got home, the kids all played outside. (Which is amazing in itself – Teddy spent the first several “outside play” days this spring standing at the fence crying to get back inside, but he’s moved on now to enjoying being outside after a few minutes, and even taking his shoes off and walking around the yard barefoot. AND he loves to play in the sand.) We came in when it started getting dark, and Teddy was soooo tired. He had a quick bath and then fell asleep before 9. 🙂

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Amazing Company – Dannon

So. You know how Teddy’s not really into eating? He was eating shredded cheese for a while, but now he won’t touch it. He will put chips in his mouth (not crackers) and chew, but then spit them out. He eats some yogurt and actually swallows it. He really likes the wrappers that chocolate comes in. 🙂

And then a few weeks ago, at the store, I bought the kids some Danimals smoothies as a treat. Every once in a while, I’m nice like that.

And then Teddy drank three or four. In one day.

What? Yeah.

So I bought some more and then also started trying to replicate the recipe. Even if I put the home-made smoothie in the Danimals bottle… no dice.

Alright, Teddy. We’ll do it your way. So, we bought some more Danimals.

And then one day I decided to contact Dannon about coupons. I’ve asked a few other companies for coupons in the past and had good luck, I figured it was worth a shot.

I told them a little about Teddy and why I was asking.

And then today, this showed up:

Danimals

Actually, not just this but a whole bunch of them. Whoo hoo! I’m just blown away by the generosity of Dannon. 🙂

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Central Iowa Kidney Walk

The Central Iowa Kidney Walk is coming up May 4, at the Fairgrounds, registration starts at noon and the walk starts at 2.

Click here to join our team and walk with us, or if you just want to donate.

See these people? Don’t they look like they’re having fun?? They ARE. Because the Kidney Walk is SUPER FUN. All the Cool kids are Doing it.

 

Thanks!!

 

 

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Easter and Science Center Photos

 

 

Teddy was rather unimpressed by the whole Easter Egg Hunting deal. He could not have cared less what those big plastic things in the grass were, he was vaguely interested in their contents, but mostly he wanted us to stop putting them in his basket, which was clearly the holder for NerNer (Mater).

Easter - throwing eggs out of basket

Easter

Easter

That’s the whole crew this Easter.

 

Last week was Wally’s 10th birthday, and he wanted to go to the Science Center.  Teddy (predictably) wanted to play with the trains and the cars.

Science Center

Science Center

 

Pictures of the rest of the family are over at their blog.

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Random pictures of how adorable Teddy is

Who doesn’t want to see pictures of how adorable Teddy is?

20131225_061849 Sleepy Bear Sleepy Bear
Sleeping

Snuggly Bear
Snuggling

Sleepy Bear
Being Silly

Shadow
Waiting for Daddy to come home

Teddy Taking BP Machine for a Walk
At Clinic, taking the BP machine for a walk

Bath
Taking a Bath. This is Teddy’s first honest to goodness bath in the bathtub sitting down. This was HUGE in our household. (Genna’s not taking a bath, FYI. She’s going for a swim. Hence the swimming suit. She hates baths. Loves swimming in our tiny indoor pool. Whatever.) (And Teddy’s not allowed to drink bath water. He hadn’t yet figured out how to successfully get the water to his face at the time this picture was taken.)

Teddy Bath
And he repeated it the next day, without Genna being there to boost his confidence.

Teddy Snow
Playing in the snow

Teddy Snow
Five seconds later.

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Misc Pictures

This is how we roll
This is how we roll.

Snuggling at Home
Back at Home

Snuggling at home
This was Thursday afternoon. From like 1 until 4 or 5. Awesome.

Many of Teddy’s meds come with scary warnings.
Drugs

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Love

Love

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