Our Teddy Bear's Journey

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

Hospital Stay, New Plan for GI

Well, last week, Mr T was admitted to the hospital for dehydration again. I don’t understand what causes this, but every once in a while he gets something going with his GI system that starts as watery diarrhea that gradually gets worse, then one day it’s markedly worse and he starts vomiting every drop of fluid I try to put in him. That leads to nothing good at all. A fluid bolus with the IV and a day of high-bicarb IV solution and he’s as good as new.

But this hospital stay was the one that finally pushed me far enough to decide to take his GI care elsewhere. We left with no definitive plan, no answers, and no followup on previously-made plans. The GI thinks he might have EoE and wants to do some testing for that, but he has to be on a high dose of omeprazole for 8 weeks before the testing. But we were discharged on the same dose. GI stopped by one time while we were there and offered no opinions, thoughts, or solutions. The GI resident was rude, and kept asking questions and then interrupting my responses. He then passed along incorrect information to the rest of the team.

EoE can be tricky to diagnose and to treat, and I have completely lost confidence in the GI team at UIowa. We decided to see if we can get an appointment with the EoE team in Cincinatti. I think we’ve started that process; I’ll update when I have any information.

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Tips for Families planning a Make A Wish trip to Disneyworld

When we were planning our trip, I couldn’t find much online specifically aimed at families taking a Wish trip to Disneyworld. So many of the regular Disney planning things don’t pertain to Wish families, but I had so many questions about the things that would be unique to our trip. Hopefully, this document at least partially addresses that hole. :)

What our Wish trip included:

Travel there, travel back, and 5 days of park tickets. You can also typically request one or two special things – we requested tickets to Mickey’s Not So Scary Halloween Party. They say it’s a week trip (7 days), but it’s really just 6 nights with 2 travel days and 5 days to enjoy the trip.

We got a rental car – a van, actually. Some families instead made use of the Mears shuttle service. The car rental included carseats, but we brought our own for Teddy. We used their booster, which was clean and seemed nearly new.

We stayed at Give Kids the World Village, which includes free meals.

There are also a plethora of other tickets available for other experiences and places in the area – you’ll be given a list at checkin. Plan for check-in to take a few hours. Yeah.

This is an excellent resource for planning. It’s the GKTW Village Guide. It has a lot of details in it.  And this is their pre-trip section of their website.

You’ll also want to join the DISboards, and look in their disABILITIES section for lots of great info on Disney with disabilities, health problems, and Wish trips.

DisneyWorld:

Our Wish trip included 3 days of park hopper passes to Disney parks. This is not enough to see everything, so don’t try. Seriously don’t try. Also, Do *not* just show up at Disneyworld without a plan. Get a guidebook or at the very least read some websites to get a good sense of what is there and what you want to see and do. Make note of any time-sensitive plans you might have (parades, fireworks, other shows).

Your Wish trip includes a Genie pass – it’s a pass with Genie on it. This pass is your golden ticket. It plus your Make a Wish buttons and/or GKTW Village button gets you into every Fastpass line, and lets you bypass lines at Character greetings. This means that you can make your plans to ride certain rides without any concern for crowd levels, expected wait times, etc. You don’t need to worry about Fastpass reservations. Just pick what you want to do and go do it.

You’ll also notice, hopefully, that your Wish buttons typically get you better character experiences. Not always, but generally, we noticed the characters spent more time with our kids when they knew we were there with MAW. Sometimes, they shut down the line and let our kids have a little while in the room alone with the characters. Sometimes, they pulled other characters for group pictures (which NEVER HAPPENS outside of a Wish). It was awesome, and the character interactions were probably the highlight of the trip.

If you’re going to see a parade or fireworks, get there early. 30 minutes at least, an hour at least if you’re there during more crowded times. If you see people starting to line up for the parade – find your spot!

You also get a free Photopass CD. Use the Photopass photographers as much as you can (but then also have them take pictures with your camera, or take your own pictures – some of the photopass pictures are very disappointing). Find out before you go about Magic Shots – I totally forgot and am kind of mad at myself. :)

Universal Studios:

The “standard” wish trip includes 2 day park hopper passes to Universal Studios/Islands of Adventure. Universal is not a great place for the smaller kids. Teddy had two rides he could do, total in two parks, and one of those he got to do only because the employees were very very kind. He’s no 36 inches tall, even with shoes on. They knew it and I knew it. (But we were on a Wish trip and they let it slide.) It is great for older kids. Like, Wally is 10 and big for his age, and could ride everything and likes thrill rides – he was the only kid who really enjoyed Universal. That said, the treatment at Universal is amazing. The pass for Universal gets you a personal escort from the ride entrance around through back entrances and directly onto the ride. (Disney, you still have to wait a few minutes because you’re in the Fastpass line – Universal is really front-of-the-line access.) Universal also has very very few rides that don’t get you some degree of wet – from sopping wet to just a bit spit on. I don’t enjoy that at all.

We did get to meet several characters, which the kids loved, and we had a lovely lunch at Circus McGurkus.

Again, it’s not a good idea to show up without a plan, but we largely did Universal without a plan (because we totally ignored the plan we had) and it was OK. Lots of wasted time, though. Also, never split up and leave your cell phone with the other adult in your party. Finding your husband and other 2 kids is a great way to waste a few hours at Universal. :)

Sea World:

Sea World. OK, I have no issues with animals in captivity. But sea world was dirty and their employees were about what you’d expect for, I don’t know, our local theme park. The experience here just wasn’t as good. The pass you have gets you into their “fastpass” line, whatever it’s called, but that doesn’t really amount for much – or didn’t while we were there.

Give Kids The World Village:

The house that you stay in at GKTW is nice. It’s a duplex, and though we could sometimes hear our neighbors, we didn’t hear them often. The kitchen includes a full size fridge/freezer, a cooktop, a microwave, coffeemaker, blender, toaster, and dishwasher. There’s no housekeeping during your stay, but you don’t have to clean when you leave. There’s also a washer and dryer and free detergent (it’s Tide). Bathtub, shower, two bathrooms. Dressers. Super nice.

A Present Fairy visits every day with fun little presents. Some are kind of junky, some are awesome.

The pool is nice – zero-entry and they have PVC wheelchairs available for use.

The village has all sorts of fun things – characters come for greetings, there are organized activities, there are fun places to visit, a carousel, etc. Some of the activities and whatnot are really amazing, and some are kind of… awkwardly not amazing. But it’s fun!

The food is free with your meal card. The food from Katie’s Kitchen for lunch is REALLY REALLY good. The rest of the food is OK. The express breakfast is not so great, lol, but the breakfast at the Gingerbread house is pretty good. They had good grits and fresh waffles. :) And there’s free ice cream basically all the time. And there’s pizza delivery.

General Tips:

All the parks have bag check. Don’t settle in for the day at the park until you’ve passed bag check. In other words, carry your bags until you get through bag check.

I have a unique way of packing our bags that made things much easier on us. I use a bag within bags system that makes finding things faster and easier. Our big backpack we left in the stroller at all times, and I caribinered it to the stroller to make it harder to steal. Inside was a large bag (the small wetbag I sell at Wallypop) full of diapers, diaper cream, wipes, and changing pad. Once through Bag Check, this bag went into the seatback pocket on the stroller for easy access. It was also caribinered in. Then also in the big backpack were a series of smaller bags: one for rags, one for First Aid items (bandaids, advil, Shout wipes, Bodyglide, moleskin, sunscreen), one for Entertainment (coloring books and crayons, bubbles, glow wands), etc.  I also brought the ipod in a waterproof case to which I attached a leash and a caribiner so I could clip it to the stroller. Sometimes T needs to chill out with the ipod, and I’m ok with that, but I didn’t want him dropping it. (I also had a caribiner leash for the sippy cup, and a few other leashes that came in handy for stuffed animals. :) )   I also packed a smaller backpack that I never took off. It contained my money, my phone, and Teddy’s food and meds in a small lunchbag.

Stroller

This was our stroller. Giant caribiner there on the left, to hold misc items. Bag with diapers in it behind the seat (mickey bag). The other seat back held the fan and our daily plans. The panda bear is a stroller lock. We rented a stroller from Orlando Stroller rather than using the park strollers that we could have rented for free with our WIsh buttons. The rented stroller is more comfortable, reclines, and has storage. It was worth the money. You can also see the cheap children’s watch I zip tied to the stroller. We don’t wear watches, this was easier that getting out phones. Also I made a stroller tag (picture of McQueen with Teddy’s Stroller printed out and laminated) that I zip tied to the handle – both to allow us to easily identify our stroller, as well as to prevent anyone else from accidentally taking our stroller.

I did most of T’s diaper changes in the stroller. Found an empty corner, situated ourselves so nobody could see, and did it. Cleaner than changing tables in bathrooms.

I bought a stroller fan and it was the best money I’ve ever spent. It’s actually not a stroller fan, but a larger clip-on fan. We only used it for a few hours every day, but it was NICE TO HAVE.

The best thing I did was print out maps of the parks in advance. For Disney parks I used Kenny the Pirate’s maps (google him). They’re clear and better drawn than the official maps. And they have the name of each attraction written ON the attraction on the map, so you don’t have to use an annoying key. Then I circled the things we wanted to do, made note of any time-sensitive plans we had, and wrote down anything else I thought important… then laminated them. :)   A page protector would work just as well. Those maps were awesome.

Meals: Some days we wanted to leave GKTW before they were open for breakfast. Most days, we did not come back for lunch. A few times, we didn’t make it back for dinner. Walmart is just down the road – we stopped and picked up easy breakfast foods (instant oatmeal and frozen breakfast sandwiches), sandwich fixin’s, chips (for Teddy), granola bars, cheese sticks, and Gogurts. And a case of bottled water. I froze most of the water. Every day, I packed Teddy’s cooler with his meds and food and an ice pack. And I also packed a Family cooler, with 2 frozen water bottles, a sandwich for everyone who eats orally, gogurts, and cheese sticks. I also packed granola bars in the backpack. We pulled out the granola for midmorning snacks, had our sandwiches for lunch, snacked on chips or nuts or bought snacks in the afternoon, and bought dinner if we weren’t back at the Village. Bringing lunch cut down on our expenses and also gave the kids some “normal” food to eat. I do wish I’d done more planning for snacks and dinners, though – we ended up eating some pretty crappy foods. :)

We started out each day with 4 water bottles: 2 from the fridge, 2 frozen in the cooler, and 2 frozen and just loose in the backpack. This wasn’t nearly enough, we still bought drinks, but it was a good start.

While I’m talking about meals – we did want to have dinner at one of the restaurants at EPCOT. Most of the restaurants are buffet-style. Teddy, as a transplant recipient, cannot eat from buffets. (Of course he barely eats orally anyway, but he does chew on some foods and we like him to participate in mealtime with us.) When making advance dining reservations at Disney restaurants (and, I assume, Universal ones), there is a place to mark if you have food allergy concerns. Our concerns were not with allergies, but there wasn’t a “my kid can’t eat off the buffet” option, so I selected that. When we arrived, the chef came out to talk me, and I explained the problem, and she said it was not a problem at all to bring him food from the kitchen that had NOT been out to the buffet yet, which was exactly what we wanted. :)  (I had checked in advance to make sure this would be OK, so I knew going in that it would be fine. My understanding is that they can do this at ALL buffets. The Chef walked along the buffet with me and I pointed out food I thought he might enjoy, and she brought out his plate for us with fresh foods.)

I’ve read a few disappointing reports from Wish families who don’t feel that their trip was special. I don’t know what the difference is between our experience and theirs. I will say that getting over any shyness about wearing/using the special passes and buttons is key to getting special treatment. People don’t know you’re on a Wish trip if you’re not wearing your buttons. We also didn’t really EXPECT special treatment, so any time we got some, it was fun and special. It’s not really like people went out of their way to sprinkle Fairy Dust on us or anything… but when we gave people the opportunity to go out of their way for us, they often did.

Get the Stroller as Wheelchair pass. You can still park your stroller any time you want, but if it makes it easier, you can bring it in line. We liked having it in line to keep T from licking walls and to keep him a bit separated from other people and their germs. And, let’s face it, awesome seating at shows. But looking up in advance how each ride worked with wheelchairs might have been helpful. We got great seats at one show, for example, but it took 30 minutes to get out of there afterwards because there was only 1 elevator.

Be kind. Be kind. We saw several of the same Cast Members at Disney on our different days in different parks. They remembered us. Happily, they remembered us because we were kind and fun and polite. Not everyone at Disney is nice (guests). YOU be nice. Being nice and making friends is also your key to a better parade and fireworks experience. People WILL try to shove in at the last minute before parades. If you’ve befriended those around you, you form a loose “team” that prevents those last-minute shovers from shoving in in front of you. :)

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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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Eventful Day

Well…

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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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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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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