Our Teddy Bear's Journey

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

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.

Tornado
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.

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

Cupboard
Crawling into cupboards at Genna’s speech therapy.

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

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

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

Chickens
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.

Play
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).

Sleeping
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.

Shirt
Some awesome family friends sent us this Tshirt for Mr Cars Obsessed. 🙂

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Genetics

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 THEN NOBODY DID THE GENETIC TESTING.

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!

So.

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.

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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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Food and Poop

In the ongoing experiment that is Teddy’s diet and GI tract, we’ve tried a few things these past few weeks.

 

1) Saw a local GI who suggested a Thyroid check and also adding Benefiber, despite the high amounts of dietary fiber in his diet. Then his nurse failed to call the lab orders in to the correct lab, twice, so we still haven’t done a thyroid check. We did add the Benefiber, and it seemed to help for about 1 week. I started it April 20, and by April 21, he wasn’t having watery or even particularly runny poop any more. I took pictures. (Yes, I have pictures of actual formed solid poops. No, I’m not sharing them.) But he was still pooping 8-10 times a day. But at least they weren’t runny and messy, right? A fellow kidney mom said her experience was the same the first week of Benefiber, but the second week, the frequency was reduced.

2) Sunday, April 27, Teddy’s poop was no longer solid. Mostly mushy. 😦

3) Monday April 28, I started a pre-planned change to Teddy’s diet. I moved him to all baby food. Actually, the recipe is baby food with oil, molasses, honey, almond flour, gelatin, and milk. Another friend of mine had great success with her daughter’s diarrhea after switching to a diet similar to this, and yes I’m at the point where I’ll try random things that other people I know have tried.  Also, we’ve always had this vague plan in the back of our minds that if we’re inpatient unexpectedly and I don’t have enough blends and I don’t have my blender, we’ll switch to baby foods, but we’ve never really had any firm idea how we’d actually do that. Our nutritionist found a recipe online that I wasn’t thrilled with, but had agreed to, but we’ve never tried it. I wanted to try it so I’d have more confidence it’d work if needed.

4) Thoughts on that:

a – Monday, I used cow milk. He vomited at least half of his intake, and his eczema got much much worse. Monday night he didn’t sleep well because he kept trying to scratch the backs of his knees and elbows. Tuesday and Wednesday, I used canned coconut milk and he tolerated that much much better. Thursday, I used milk again and the eczema again got worse. I’m writing this on Sunday, and it’s still pretty bad, but not as bad as it was Thursday.
b – I was actually able to get in ALL of his calories during the day (first time ever) and most of his liquid during the day.
c – The blend was REALLY watery, which was strange, and I wasn’t sure how he’d do keeping it down, but he’s lately only been tolerating fluids when given with food (whereas before, he’s always had to have them separated). He did fine once we removed the dairy.
d – I personally prefer giving him our own blends, because he gets a wider variety of foods that way. (There isn’t baby food salmon, for example. Or baby food Eggs.) But having a plan that I know will work using just baby food and a few extras is super. Since this plan doesn’t technically have any elements that must be kept cold and it can be blended with a stick blender, it should in theory be easier for travel, for example.

5) During the week of the baby food, his poop got progressively worse, until by Saturday, he was pooping mostly liquid with very few solids, and the frequency was up to 10-12 times a day. The question remains: is this from the baby food blend, is this from the sugars (molasses and honey), is this from the dairy, or is this from his GI system trying to keep us guessing?

6) I would have liked to have a chance to figure that out. (My plan was to return to our regular diet this week (May 4) with the Benefiber and see if things improved again. If they did, then I was going to do another week of baby food but no dairy at all, and then maybe a week of regular blends but WITH dairy, and then at some point try a week of regular blends without the Benefiber.) BUT then all of our appointments at UI, including with GI, got moved up to next week, so I’m going to have some very incomplete information to take to GI. The good news here is, I seriously doubt they’re interested at all. They seem to not care one iota what I feed him as long as I’m not giving him any fruit. (which I am, FYI, because through experimentation, I discovered that it makes NO DIFFERENCE.)

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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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Yikes, haven’t updated for a while

So remember when I said No More Iowa City for TWO MONTHS!?!?!

Well.

So Teddy got a GI bug (as we all did) and ended up admitted for a few days about 3 weeks ago just to get rehydrated. His GI system can’t handle a whole lot of liquids, so the more I tried to rehydrate him at home, the more he just had diarrhea and I honestly believe I was making the problem worse. The ER doctor here in town (in our ONLY bad ER experience here) did labs only after I insisted (labs were the ONLY reason we went to the ER, after he’d gone over a day without peeing at all) and then wanted to send us home just working on oral hydration. Which was fine. He sent us home, I called his nephrologist myself, she got his labs, and got him a room on the peds floor at UI. It was fine. Just a few days.

Then we had to go back for an appointment with neurology. I haven’t talked much about it, but evidently his liver biopsies have both showed some concerning things that could point to a particular seizure disorder that doesn’t show outward symptoms this young, so the more I asked questions about Teddy’s breath holding spells, the more everyone started getting pretty concerned. Not necessarily concerned… more like “hey, it’s probably nothing, but I’d sleep better at night if I had to talk to neurology.” So we talked to Neurology. They had no concerns about him at this time, they feel confident it’s just breath holding spells. Everyone feels much much better now. 🙂

Yesterday, Teddy had his hearing checked. I can’t remember who told us we should take him back for a hearing check after the tubes came out, but someone did and so I took him and it was PERFECT. I might take him back for that every few months, just because having tests come out PERFECT is so super fun and not something that happens all that often.

His labs have been a little all over the place, but not too terribly awful. His prograf (drug) level has been REALLY all over the place, which is bad. We’re trying to figure that one out.

That’s about it. We go back to Iowa City at the end of this month to see Nephrology, GI, and HOPEFULLY Genetics will have some news for us by then, as well.

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