Our Teddy Bear's Journey

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

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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How is Teddy Doing?

He’s doing really really good!!

Labs have been pretty good. The big important kidney ones have been super as always. The rest of them are kind of iffy/great/not great. Some things are great, some things are not great. We’re working on figuring out what’s up with everything and getting it solved.

The biggest thing is that since I reduced his calories from 1400 to 1000 about 5 weeks ago, his diarrhea has disappeared. He had several days of diarrhea earlier this week, but it seems to have gone away, so I’m thinking it might have been related to travel. (We went on vacation. More on that later.) And since I’m not feeding him as much volume during the day, he gets hungry. And eats. Food. With his mouth.

Yes. Food. Mouth. Chew, swallow. He does it. Not a lot. But more than he used to, and he’s shown a great willingness to try new foods in the last few weeks, as well. Pancake. He licked a muffin. He swallowed a piece of pasta. He’ll eat an ounce or so of his blended diet (what I put in his tube) every day if I feed him with the syringe.

It’s exciting.

In the last 2 months, he’s learned how to run, and how to jump and get both of his feet off the ground. 🙂 He loves it and does it for fun. He has discovered how much he loves water play, finally evidently realizing that water is, in fact, not evil. 🙂 He plays in the sink. He insists on baths whenever he thinks of it. He plays at the water table outside. He loved the pool on vacation.

He’s very very very 2. And very very very active. In fact, we had a group meeting with several of his therapists and a new person this week and the new person kept talking about how very very active he was, and the therapists all said almost in unison, “he’s calmed down considerably compared to 6 months ago!” And it’s true. Once he learned how to walk, he was just basically moving all the time. Read a book? What? Why would I do that when I could look at the book for 3 seconds then go get five other things, and look! something shiny, and I forgot I left my car here, and there’s a ball!! Non stop. Now he will actually play with something, which is nice. But he’s still just very very very active. And Two.

He’s going to have an evaluation with a speech language pathologist in a few weeks. He’s got a sizeable vocabulary, and he can string words together into sentences. I think we can understand him better than we could understand either of the other two at this age (but that’s a really really low bar – they both had terrible speech). But he is not able to converse. He cannot or does not answer questions. There’s no two-way conversation with him. So we’ll hear what she has to say, and if it’s something to be concerned about or if he’s just at the tail end of normal.

His blood pressures have been pretty stable – enough so that I’m going to ask at our next appointment if I can try reducing his dose of anti hypertension meds.

We get to try stopping one of his meds next week. Kids are usually on Valcyte for 3 months following a transplant, but with Teddy’s congenital immune deficiency, his doctor wanted to keep him on it for a year. Then when his viral levels started climbing, she doubled his dose and so he’s been on a pretty high dose for a good long while. We’re going to stop it and monitor viral levels for a few months and if everything stays low, then we’re done with Valcyte for the time being. 🙂 Yay.

There’s another med we’re going to discuss dropping, as well, but I haven’t had a chance to research it yet.

We had an appointment with the Genetics doctor a few weeks ago to discuss the outstanding issue there, and though he discouraged proceeding with the testing suggested by the liver biopsy (in favor of waiting to see if symptoms develop), I basically insisted on doing it anyway. They were going to get started on the paperwork and draw blood for it when we’re in Iowa City next (early July). I should know by then how long it’ll take to get results. It’s one of those things, they want to see us in person to discuss results, so even after the results come back, we’ll have to wait until we can get out there for an appointment.

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