Our Teddy Bear's Journey

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

Holland or Somalia?

I had this blog post bookmarked from a while back. The Big Bad.  Long-time readers might know that I’m not a fan of the “Welcome to Holland” thing that’s so popular among about half of special needs parents. (The other half find it irritating.) I couldn’t agree more with Robert’s post on the subject.

…for many of us, perhaps even most, having a child with a disability isn’t just different. It brings its own element of chaos and uncertainty and pain… Our plane didn’t land someplace charming.

Our possible world contains some scary things indeed. Including the scariest, the one possible outcome that keeps us up late most of all. Of all the things that might befall our children, from developmental delay to social awkwardness to persistent non-verbalism to physical impairment, there’s that one that we fear the most, the one that involves burying our children. The Big Bad.

“Welcome to Somalia”, perhaps.

… for those of us who fight off the Big Bad, either as an active threat or just a possibility to scare the shit out of us every day forever, the idea of celebrating our child’s difference is… complicated.

 

You can read the rest over at Support for Special Needs.

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Gtube

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Yup. Playing in bed one night, fully clothed. I was watching Downton Abbey, and turned around, and there he was, chewing on his button, with stomach contents spilling all over his clothes. It was awesome.

 

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Aren’t I SO CUTE?

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Hi, my name is Teddy and my favorite game is Peek a Boo. I really like playing peekaboo around the side of the bed rail.

 

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Transplant News

After emailing our transplant coordinator last week to check on some things, timing-wise, I found out a few things that had me discouraged and a little upset.

Particularly, though all along, we’ve been told that he’d need to be appropriately vaccinated for his age, all of a sudden, and only because I asked specifically about it, we learned that he needs 2 doses of MMR, and 2 doses of varicella (whereas normally the 2nd dose isn’t given until 4). This is the first time this has ever come up. MMR freaks me out. It beyond freaks me out. My MMR booster gave me ITP, an autoimmune disorder that causes low platelet counts, and was a serious health issue that I struggled with for the entirety of my teen years. High doses of prednisone, weight gain, round face, out of control emotions. It was awesome (not). Giving two doses of MMR, particularly with a very short interval between them (4 weeks is the CDC minimum – which they basically say they think should be safe, but they don’t know for sure – NICE), is seriously making me have a bit of a panic attack.

And I know it’s not a HUGE deal, but it’s frustrating.

And then the ensuing barrage of emails back and forth was further frustrating, with the doctor (who I found out later is going to be Teddy’s primary after transplant, sigh) saying things like “I know it’s confusing when you don’t read medical journals” and “this is just what transplant programs do.” Neither of which really flies with me. I could not give a rip if the Pope himself does something in any particular way, if he does so without evidence.

Also, whereas after Teddy was approved for Transplant, I was told that he needed to hit 9.5 kg (which he did) and get his MMR. Now all of a sudden, it’s TWO MMR and TWO chicken pox. That’s what I found most disturbing – this is the first time it’s come up, and it only came up because I specifically brought it up. I asked them on Monday at my appointment if there was anything ELSE that he needed to get done, and was assured there was not.

Then I asked about a dental visit. Turns out, yeah, they want him to have one of those, too.

It’s starting to get a little frustrating. You would really think they would have some sort of checklist somewhere, right?

However, the GOOD news is that I also found out on Monday that we have an approved donor!! The donor is a friend of mine who wishes to remain private, but we are thrilled to have THAT big hurdle out of the way!

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Hip Helpers and Crawling

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Alright, here’s Teddy doing what he does best in the Hip Helpers. Sitting.

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Without the Hip Helpers, he mostly ends up like this if he gets on his hands and knees (which is still a rarity for him). This is him pushing himself back up into a sit from being on hands and knees, but imagine him up on his knees, his legs would still be that far apart.

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THIS is how he moves about. This is new this week. Right leg tucked away in front, left leg extended straight out to the side, he walks forward with his hands and uses his abdominal muscles to pull his body along.

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This is Teddy on his hands and knees WITH the Hip Helpers. They do what they’re supposed to do, that’s for sure.

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And this is his ankle, and this is not as far up as it goes. His toes touch his shin.

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Immunology and Kidney Clinic visits

Let’s start with last week’s immunology visit. They wanted to run a bunch of labs, basically, and that was essentially it. We originally got immunology involved after his repeated infections to make sure that there wasn’t anything wrong with his immune system. He’s had off results fairly consistently, but he was also always fighting off one infection or another. The results from last week show that generally, things look OK. His IgG is still low (that’s the one that’s been consistently low) but they didn’t have a whole lot of theories on WHY it’s low, or what to do about it, other than “watch it.” It’s just a wee bit low, so I’m not as worried as I’d be if it were super low. It’s barely low.

The week before immunology, Teddy had an ear infection, but we were able to get it cleared up with ear drops. He, um, puked in his sleep and we didn’t notice, and it totally ran into his ear (yeah, gross) and then a few days later, his ear canal was completely blocked by drainage (that ear has always tended to drain anyway) and when I cleaned it out, it burst thick pus all over. It was pretty gross, but not near as gross as watching the surgery ARNP pull out an infected missed stitch from Teddy’s belly. I was worried we’d have to do oral antibiotics, and then worry about C-Diff and dehydration and another inpatient visit, but we were able to avoid that. Yay.

Then this week, we had clinic with our nephrologist. Teddy’s looking good. His labs are all great (for him – again, if YOU had labs like his, your doctor would have you admitted faster than you could blink… but for HIM, they’re not bad). He’s still growing. He’s getting taller. He looked good.

After our clinic appointment, we went up to the dialysis unit to meet a former patient who’s started up a nonprofit organization to raise awareness of and goodies for the kids on hemodialysis. It was a little bit of a bummer, more so than I think anyone thought it might be. He’s nearing 21 and on his third transplant, which they are worried that he might be rejecting. His first kidney failed after about a year. So… that was not quite what I was hoping for, you know?

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Physical Therapy

Teddy’s a little behind in his physical development. It’s not directly caused by the kidney failure, but is indirectly the likely result of a combination of too much hospital time, prematurity, and the fact that his body spends so much energy just keeping him alive and growing that it just doesn’t have a whole lot left over for things like crawling or walking.

He’s 14 months, and his one gross motor skill is sitting up by himself. Not getting into a seated position, or getting out of a seated position. But sitting, he’s good at. No crawling, creeping, standing, pulling up. Nothing like that. Sitting. He has, all on his own, gotten better about leaning. The first time the physical therapist visited him, he would not even lean, and absolutely panicked if he started to tip or lean a little. Now he will stretch, stretch, streeeeetch to reach a toy with a high degree of confidence.

Teddy’s been working with a physical therapist through Early Access for about two months now. She comes over every other week and works with him and gives us homework to work on after she leaves.

The first visit, we focused on getting into and out of a seated position. After each diaper change, I diligently roll him onto his side, then bend his legs up to a 90 degree angle, then provide support and pressure in the right places to help lever him up to sitting. This is a skill he has yet to master – sort of. He actually CAN get from laying to sitting. But he does it by laying flat on his tummy and pushing up into a full split, then swinging his legs around. That’s not a great way to do it, but we’re reluctant to take away an adaptive skill he’s developed. He’s so darn proud of himself when he does it, too. One night, he stayed up for HOURS practicing.  🙂  But he has no interest in helping himself get into a seated position the “right” way. None.

He also is still extremely reluctant to lay back down. I think he’s quite afraid of falling. He’ll do it if there’s something between him and the ground – like his sister, or my foot. He’ll lower himself onto the object and from there, slide down to the floor. But he won’t lay down on the floor (even with a cushion), unless I lay him down.

On her most recent visit, the therapist, after watching him for a bit, mentioned that he might need ankle braces (AFOs) as he gets more interested in standing. Part of his problem in moving around physically is that his joints are super flexible. It’s not necessarily a bad thing, but they’re so flexible and loose that it makes it hard for him to be stable. Particularly, his hips are just crazy flexible, and his ankles are, as well. Evidently, you’re not supposed to be able to touch your toes to your shins – who knew?

She recently brought us something called Hip Helpers. They’re like a lyrca mini skirt that’s sewed together between the legs. They keep his legs from getting too far apart. He wears them when he’s having floor time. In theory, they’ll help him keep his knees closer together when he gets into a crawling position, so he can focus on moving forward rather than have to spend so much effort pulling his legs together. So far, he mostly just sits when he has the Hip Helpers on, the goof.

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Kidney Transplants

Some videos and photo shows of the process, if you’re interested:

http://www.cbsnews.com/2300-204_162-10012975.html  Slideshow with some graphic images.

http://www.hopkinsmedicine.org/kidneytransplant/stories/documentary.html   video

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Vaccine Deficiency

I’m sick of seeing this on Teddy’s chart. What it should say is “Teddy has a well-educated, caring mother who has striven to do what is best for her child.” And perhaps in the details section, it could include some verbiage about the CDC’s recommended schedule being based on the desire to do the greatest number of shots in the shortest amount of time for compliance reasons (since well child visit attendance drops off the older a child gets), rather than looking at what’s really best for the child’s overall health.

Yeah, I haven’t let him have shots when he’s been recovering from an infection. I think his body has enough to deal with fighting off a bloodstream infection to not also have to shoot him with chemicals and viruses.  I’ve only allowed a max of 2 shots at a time (we were doing just 1 at a time, but then he had SO many infections, that got to be difficult to continue) because, again, I think shooting him up with THAT MUCH stuff at one time is just ridiculous.

Never mind that the CDC schedule is “recommended” not “required,” and therefore it’s technically not possible to be objectively “deficient.”

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It’s the Lack of Appreciation

You know what’s hardest about exclusively pumping? The lack of appreciation. Not from others. From the baby. The one who I’m doing this for.

My other babies, who were breastfed via the usual, direct route, always had such appreciation for the awesome food they were getting. From a pretty young age, they’d get excited at the prospect of nursing. As slightly older babies, they’d learned that if I messed with my shirt, it meant nursing, and they’d start to hoot and clap. As toddlers, they would say nice things about nursing, about breastmilk, etc., and do sweet things like pat my breasts lovingly. I took to being careful to always wrap in a towel or robe when dressing or showering if I didn’t want to drop everything to nurse, because seeing my breasts would generally lead to nursing an excited, eager child. It was a two-way relationship. Each child has been able to decide for themselves when they’re ready to be done, and as long as we’re both still comfortable with continued nursing, it’s been fine. (If either stopped being comfortable, we’d stop.)

Teddy could care less. In fact, he’s beyond caring less. He actually slightly resents the time I spend pumping, and hates that I won’t let him play with the flanges instead of insisting that they remain in place on my chest. Because he’s 100% tube fed, he doesn’t even seem to enjoy the milk that I work so hard to produce for him. It’s an extremely one-way relationship. There’s no positive feedback from him to encourage me to keep going.

Yet I do.

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