Our Teddy Bear's Journey

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

Eventful Day


It’s taken me long enough to get this post finished up, yikes.

Thursday morning, super early (like 3?) Teddy woke up absolutely struggling to breathe. He had retractions (where your chest goes in instead of out) and was wheezing in his throat. I watched him for a few minutes and it didn’t get better and he was really really struggling. So I woke Randy up and got his opinion. We both agreed it seemed serious and I was not comfortable driving him to the ER myself. So we called 911. I, frankly, was worried about the Enterovirus that’s going around (he’d had a cold for a day or so) and not being certain how quickly it could get bad in an immune suppressed toddler.

When the EMTs came, they said his lungs sounded fine and it sounded like he might have a bad case of croup.

So, yes, I called 911 over croup. But seriously, the child could not breathe.

The EMTs thought he needed to go to the ER, but we declined to accept a ride from them. The doctor at the ER (same one who did Teddy’s stitches) said he had moderate croup, he was glad we’d come in, and it would not be likely to get better on its own, since the cold air hadn’t done much for it. He said it is absolutely possible for a kid’s throat to swell up so much that they actually cannot breathe, which I didn’t know. He got approval from Iowa City for a big dose of steroid and off we went…

to the other hospital in town for his previously-scheduled skeletal survey. He’s had some concerning labs (really high alk phos again) and has been reporting pain in his limbs, hands, and toes. So, that combination evidently can be pretty concerning. So… skeletal survey, it’s a series of Xrays. He hated it, but got over it pretty quickly. He was mostly scared, and no matter how many times I tell him “no owies,” he just doesn’t really believe me. (Though I’ve never lied about it, I think he and I might have different definitions of what constitutes an “owie.”)

The skeletal survey looked good, so we’re still looking for a cause of the pain + high alk phos. There are a few labs still outstanding that might shed some light on what’s going on.

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Clinic Visit

We had a GREAT clinic visit today. I didn’t even have my suitcase in the car and I didn’t bring my Just In Case bag of supplies. :)

We started off by popping into the clinic quick an hour before our appointment to get a Prograf level drawn. (Prograf is one of his immune suppression drugs, and it must be drawn when his next dose is due, which is at 9.) Our plan was: quick labs, then playground until appointment check-in time.  How it worked out: Hit lab at 9:10, exit lab at 10:10. Not kidding. And the phlebotomist today was NOT super skilled at finding Teddy’s veins. And his third poke, after we switched arms, he screamed like we’d just cut his arm off, so that was fun. :( He’s usually so good for labs with his super favorite phlebotomist here in town, with some protesting but not much… so I think it was not so much him but more her.

We discussed…

- Teddy’s labs, which are stellar. :) Except his Prograf, which was really high for some reason when we did labs last week at home. (which is why we were doing them again today.) Today, after a dose reduction, the level was even higher. Yay us. So we’re reducing a smidge more. Dr. Z has learned from experience with T that if you reduce his Prograf dose what seems to be a reasonable amount, his level tends to plummet, so we’re inching down by .1 mL at a time. :)

- Blood pressure. Not stellar. We had tried reducing his dose of BP meds about 2 months ago, and it became apparent immediately that THAT was not going to work. (In theory, working kidney should mean his BP will eventually be normal without meds, but nothing is guaranteed.) We increased back up to not quite his old dose, but now we think that not only was that just not enough, but that he’s actually even outgrown his old higher dose. End result: now he’s on an even higher dose.

- Weight: He’s still gaining and at an OK rate, so we’re not messing with diet at all. Height, he’s also growing. 35 inches today. That’s 8th percentile for height. Last time I looked him up, he wasn’t even on the chart, so this is a huge change. :)

- Growths. He has this thing on his leg. But it doesn’t look like a wart, doesn’t look like Molluscum, so it might just be… a bump of skin on his leg. It hasn’t changed in any way since I first noticed it 3 months ago. But now he’s got what looks to everyone to be a wart on his foot. We’ve got a pediatrician appt in 2 weeks and we’ll get her opinion and probably have her remove it. Before you message me about duct tape or home treatment or leaving it alone, warts are viral and can be very very hard to get rid of in transplant patients. It is better, generally, to take action early than to risk it spreading. And when I say spreading, I mean… really really spreading.

- Sleep and why Teddy doesn’t. Nephrologist doesn’t think it’s related to his meds and might just be his wiring. Ultimately, it doesn’t matter, we’re not changing his meds. Life experience of other transplant moms suggests that at least some of might be related to the high prograf level. (His sleep’s been bad since his transplant, but markedly worse in the last week or two.)

- Headaches. Teddy bangs his head, which he’s always done, but it had gotten much better and now it’s worse again. This might also be related to the high prograf. And makes sense, because his banging was worst when his prograf level was at its highest right after transplant. I think he gets headaches, and he bangs his head (either on a hard surface, or with his hands) to help it feel better.

- Diarrhea and vomiting. Again, both had gotten better and now both are worse. God only knows why. I’m so sick of this topic of conversation, and yet it’s probably the one thing I discuss the most often, ever. I bet I’ve talked more about diarrhea in the last year than any other single subject. I tried putting him back on the reflux meds, and we went from 2-3 vomits a day to 3-4 a week, so that’s an improvement. We’ll see. Otherwise I’m at a loss and can’t decide if I want to get back on GI to figure something out, or just drop it and fall back on trying to wish it all away.

- Vaccines. My favorite subject. He’s a year post transplant now, so he needs to get the very few shots he’s behind on. Did the DTAP today and will hit the other one (Hep A I think) in 2 weeks with the ped. Then he’s good until he’s 4, I guess. They think I’m funny because I know literally nothing about the schedule even though he’s my third. Not that the “recommend schedule” matters to me, lol. I’m clearly going to follow my own plan anyway.

- bicarb. We finally get to reduce the bicarb a bit and see how it goes!!

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Update on Mr Teddy

I feel like we don’t have much to update! That’s a good thing!!

- Teddy’s, um, crazy busy, even for a two year old. He’s like… a 2 year old on steroids, except our hospital follows a steriod-free protocol. Thank God, because I don’t think I could handle him on Prednisone. He’s just like a tornado. And I know you’re saying, oh, all toddlers are like that. No, other moms of toddlers, other moms of multiple toddlers, other moms with 5 and more kids, have all basically chuckled at Teddy and said something like, “wow. He’s crazy busy.” He also doesn’t sleep at night. I blame the feeding pump for part of that, and his metabolism for the other part.

- We’re waiting to hear back from Genetics. Long story short, I thought Genetics was doing things they weren’t doing (mainly because they said they’d do them, and then didn’t). Then in June, we went back to see them and to make it clear that we did want to proceed with the remaining test they hadn’t done. When I walked out of their office, the plan was: get approval from insurance, draw labs the next time we were in Iowa City a few weeks after that appt, then someone would call me to let me know how long the test would take, and then someone would call me with results. So when we were in IA City again, nobody had put in the lab reqs for the genetics testing. Sigh. Eventually someone brought it down, and then 6 weeks later I still hadn’t heard anything, so I started calling. I got voicemail. I left my cell phone number. They called back and left a message on my home number saying that *they hadn’t yet done anything with his sample.*  Then started a series of phone calls featuring Me Being Very Irate. The doctor himself returned my phone calls and we exchanged some words. He claimed there were no labs in the US that could do the test we wanted, so we’d have to send DNA from our whole family to this guy in Canada at a research lab and it would be 2-3 years, but we’d finally have an answer as to what is causing the interesting liver symptoms. Considering that I had previously expressed my desire to do ONLY the one test (for lafora, because both of his liver biopsies have come back suggesting lafora) and not go digging into his or anyone else’s DNA, I was a little appalled at this suggestion and decided to move his care to Omaha. They actually discussed options with me on the phone, and that conversation helped me find 2-3 labs in the US that could run the test for lafora, which I passed along to our doctor at UI, along with expressing my disbelief that I could find this with Google and he could not. Sigh. So… the DNA was sent off to the lab 4 weeks ago and we should have an answer in another 2 weeks.

Every time someone asks me how he’s doing, I say he’s doing great, but inside I’m really stressing about these results. :)

- That said – he’s doing great. Labs continue to be acceptable (NOT great. kidney function is great, everything else kind of flops around close to great).

- He’s started feeding therapy. I’ll update on that a bit later. :)

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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.)


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

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.


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


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.


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


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.


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


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.


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.


Genna’s butterfly.


Teddy preferred to draw on the deck.


And Wally.


More deck.

Sidewalk Chalk


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.


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.




Mini Golf

Wally got a hole in one playing mini golf.

Mini Golf


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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What we’ve been up to lately

I’m not great at pairing pictures with blog entries – I do things in batches, including uploading pictures.

So here’s some of what Teddy’s been up to recently.

Beep Beeps
This was after our most recent clinic visit. We were ready to go, but as we were walking through the waiting room to head out, he noticed BEEP BEEPS was on the TV!! (Cars) (He’s a bit, um, obsessed.) (Notably, his second favorite movie is Fast and the Furious, just the beginning scenes with the racing.)

Eating Marshmallows
In a Never-To-Be-Repeated event, Teddy swallowed marshmallows on purpose.

He had his first tornado alarm. Not really his first alarm, but I honestly don’t remember actually heading to the basement with him ever before. We really didn’t need to head down, but the weather guy said there were rotations over Clive (a suburb to the west) and we decided that since all 3 kids were asleep at that time, heading down sooner rather than later was prudent.

Wally read him stories. :) Wally’s also been rocking him at naptime (with limited success), at his request.

Crawling into cupboards at Genna’s speech therapy.

I bought this fabric to make a shirt. He stole it. Pre-shirt-ified.

This is after I literally fought him for the fabric, which he kept pulling off my work table, to get the shirt made.

NerNer (mater) soup? Yes, please. No, he didn’t eat it. I was hopeful, though.

I try to keep Teddy away from our chickens, since they have some specific diseases that transplant patients can get, but Genna showed him how to feed them grass through the hardware cloth on their enclosure.

Of course this is my favorite part of the play structure in our yard!! Unfortunately, he can’t get up there by himself (he’s afraid of the ladder), and he can’t get down (he’s afraid of the slide).

He used to sleep like this ALL THE TIME. Head thrown back in the wrap or carrier, and resisting all attempts to move him to a more comfortable-looking position. And here he is, at Wally’s music studio’s spring recital, doing it again.

Some awesome family friends sent us this Tshirt for Mr Cars Obsessed. :)

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So… Genetics did a bit fat nothing after Teddy’s transplant, whereas I thought they were sending in his DNA for various tests. Nephrology finally leaned on them a bit a few weeks ago and they sent in for one test, which was for a Glycogen Storage Disorder (type 1b). Just got the call today that he does not have that.

Which, frankly, Dr. Google had pretty much already told me he didn’t.

But, anyway, $1 billion dollars later, we’re pretty sure he doesn’t have GSD Type 1 b, c, or d.

However, that still leaves the Terrible Awful that nobody’s tested for yet, and they don’t seem to want to, and at the very least won’t consider doing so until we meet in person. (Today, she said something about only having had that one appointment. Dude, what seriously do you need us for? You’ve got his DNA, isn’t your job pretty much to test it for things? I can’t think of a single benefit that my sitting in their office will have, but whatever.)

I haven’t really mentioned this beyond some offhand references to the Terrible Awful. Lafora Disease was mentioned as a possible suspect way back when his transplant was cancelled. It is both terrible and awful. It’s about the worst thing I could imagine. (more accurately, it occupies that space along with many other things, all of which win first prize for being Most Awful.) It was presented to me as just one of the things on the laundry list of potential things that could tie together a range of his issues. I looked it up briefly, freaked out, then decided not to worry about it as nobody else seemed concerned. And they said they’d check for it. So during his transplant, they took a wedge biopsy of his liver and also did a skin biopsy. I never heard the results. Then I heard that “nothing had come back.” But that was not true.

When I got a copy of his records to take to the GI we saw here in town, I saved a copy for myself and read them over. And found the biopsy results. Which were “hepatocytes with cytoplasmic inclusions which have a glassy appearance” and, later, “abnormal glycogen present with hepatocyte inclusions,” and then “hepatocyte ground-glass inclusions, predominantly present in zone 1.” And the conclusion, which made my heart stop, “the appearance, location, and staining pattern are most consistent with hepatic inclusions described in lafora disease.” “Correlation with genetic testing is recommended.”


And I don’t understand why they’re dragging their feet. If I had to guess, I’d say it’s because genetic testing isn’t 100% accurate with lafora, and the biggest indicator will be if he were to become symptomatic, which usually doesn’t happen until 10-12.

And maybe if you’re a Genetic doctor, that course of action makes sense to you. But if you have a human soul, I’m not sure it does. I mean, you can’t say, “hey, your kid’s liver looks like the liver of someone with this awful genetic disorder, but we’re comfortable just waiting to see if he develops symptoms – maybe he never will. Have a great next decade totally NOT worrying about this for every second.”

See… I would have preferred to NOT have loooked at this at all. I’m not sure why we were looking at/for it. We were supposed to be restricting our looking to things that might impact his transplant. This clearly wouldn’t, so why was it even up for discussion? But I’m not the one who brought it up. They are. And now that they’ve opened that jar, there’s no closing it back up. I can’t go back to NOT knowing that’s what the biopsy said. And at this point, I’ll be better able to deal with life in general if I know.

So we’re headed over to see them later this month and then hopefully I’ll have convinced them that they will come to physical pain if they don’t get the results of the Terrible Awful as fast as humanly possible since it’s been ALMOST A FULL YEAR.

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Clinic Visit last week

Our nephrology appointment went well. Everything looks pretty good.

I asked about adding a magnesium supplement (his mag is always low, plus he seems to have problems absorbing vit D, which can be complicated by low mag), and she said that technically yes, he does need a mag supplement, but that causes diarrhea so she’s hoping to avoid it if at all possible.

We discussed the dietary changes I’ve tried and the results. I feel like we talked about more, but there were no major issues. We’re slowly increasing his immune suppression again, since his viral levels have all remained “undetectable” for a few weeks now.


Then we saw GI. We actually had to call in Child Life because he was CRAZY PANTS by this point. She was a life saver!


First we talked to the resident or fellow we’ve been seeing. Then she went to talk to the “actual” doctor. Teddy and I were walking the halls during this time and noticed our nephrologist in there with them, too. She’s not happy with this, at all. And I appreciated her willingness to basically tell them that.

They basically went over everything again. They’ve been very thorough in checking for things they can check for. We should try: decreasing fruit (done it), limiting juice (done it), increasing fat (he’s sitting at 60% of calories from fat, I’m totally not giving him more fat), decreasing water (he’s at the bare minimum).

They view his diarrhea now as being different from his diarrhea when he was on Cellcept. I don’t, but ultimately, I also don’t think it really matters. Frankly, runny poop is runny poop as far as I’m concerned.

I told them that literally everything we try works – for a week, two at the most. I told them that my ultimate plan was, if something seems to work for 3 weeks in a row, then I’ll stop doing whatever that thing is and see if it gets worse again, and then re-start to see if it gets better. But nothing’s ever worked for three whole weeks.

I told them I really just don’t buy the Toddler Diarrhea thing. That I have a hard time believing this is REALLY “normal.” It’s not normal to have runny, watery, mushy poop 10 times a day every day. It’s just not. I’m sorry. It’s not. And have they really seriously ever seen a toddler with “Toddler Diarrhea” who poops 10-12 times a day every day? They danced around answering that one, but the “info sheet” they brought in (as though I haven’t been Googling this) does say “3-10 times a day.” Well… I don’t know. It also says that doing the above-listed items (no fruit or sugar, no juice, increase fat, decrease water) will help. They haven’t.

They just don’t see this as a problem.

Nephrology sees it as a problem because a) not normal.   b) no weight gain.   c) unstable prograf levels. (That puts his kidney at risk.)

GI then comes in and tells me that they think his weight gain is perfectly fine. He’s following his own curve. Um… if that curve is basically flat. He’s falling off the chart again. UNLESS you cover with your hand all of the lowest weight measurements, then he looks much better on the chart. Seriously. He covered up the low measurements, but not the high measurements. Um… I am not a doctor, but I actually do know statistics, and I know that you can’t just cover up the outliers on ONE SIDE. That doesn’t work.  ALSO? It’s considered normal to have a bunch of weight gain after you finally get a working kidney. Teddy? Not so much. I wasn’t worried about the weight immediately after transplant. None of my kids have been big growers between 1 and 2. But they both grew a lot between 2 and 3. He’s getting taller, but he’s not gaining any weight. Now, maybe that is just his normal. Maybe he’s just behind a year and right now, he’s growing taller, and at 3 he’ll start to put on weight. I don’t know.

Then he tried to tell me to stop the probiotic. Not for any really good reason other than he doesn’t think they work. Oy.

And I basically said that it’s not that I’m WORRIED about the diarrhea (because they asked me how worried I was), but rather that I KNOW that it’s not normal, and I don’t know how he can have much of a normal life (or, being honest, how I can) if he’s pooping 10-12 times a day. I mean, we went to the playground with Genna for an hour and I changed three poopy diapers. Do you realize that means that either he stays in diapers until this stops (which could be FIVE YEARS OLD, if they’re right and it’s just “Toddler Diarrhea”), or he never ever goes anywhere where he’ll be further than a few feet from a toilet. How is that possibly going to work? I mean, really.

So we left it at, follow up in 2 months. And I said, I’m not going to “follow up in 2 months” for the next 3 years. Because seriously. What the hell is the point? Literally every appointment, we go over all the things they evidently suggest to every person with diarrhea, and I say we’ve already done that, and then they say to follow up in 2 months. I mean… waste of time. So, we’ll follow up in 2 months, and then at that appointment, I’ll tell them that if they don’t really have anything new to bring to the table, I don’t plan to see them again.

Also, the GI we’ve been seeing is graduating and moving on, so another GI is taking over, but this GI doesn’t do clinic on Thursdays. Which is when our nephrologist does clinic. WHAT genius thought THAT plan was going to work??


We added 2 new meds. Allergy med, to see if it helps his snoring/stuffiness and to see if it helps diarrhea. (And we have an appt with allergy later in the month.) And a reflux med to see if it helps with his random vomiting and coughing. He was on reflux meds his first year, and they didn’t stop the vomiting (but with the bad kidneys, I don’t think there was any stopping the vomiting) but they made a HUGE difference in his discomfort and in the arching, crying, retching. So… we’ll see. As it turns out, we have to get that one as a capsule and I have to dissolve it in his sodium bicarb, so I get to feel like a chemist every morning. It also makes our morning med routine a bit more complex. 8:15, mix the meds. 9:00 give meds.


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

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

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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