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We're missing something. At least one something. Here's a general update: Croup. Teddy continues to get croup monthly. His regular Otolaryngologist decided that he's above her pay grade at this point, so had us see aerodigestive at UI. (and we want to see aerodigestive at Cincinatti - and I think we're still headed that direction - but I don't regret going ahead and seeing them at UI.) That doctor did an in-office scope on Teddy and discovered a few things. [ 718 more words ]
https://teddybearsjourney.wordpress.com/…/i-dont-even-know…/

We’re missing something. At least one something. Here’s a general update: Croup. Teddy continues to get croup monthly. His regular Otolaryngologist decided that he’s above her pay…
teddybearsjourney.wordpress.com

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he needed to size up his button, figuring that would be an easy answer. And as it turned out, his button was quite small and he needed to size up quite a bit. [ 424 more words ]

https://teddybearsjourney.wordpress.com/…/feeding-tube-rel…/

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he ne…
teddybearsjourney.wordpress.com
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So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he needed to size up his button, figuring that would be an easy answer. And as it turned out, his button was quite small and he needed to size up quite a bit. [ 424 more words ]

https://teddybearsjourney.wordpress.com/…/feeding-tube-rel…/

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he ne…
teddybearsjourney.wordpress.com

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he needed to size up his button, figuring that would be an easy answer. And as it turned out, his button was quite small and he needed to size up quite a bit. [ 424 more words ]

https://teddybearsjourney.wordpress.com/…/feeding-tube-rel…/

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he ne…
teddybearsjourney.wordpress.com

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he needed to size up his button, figuring that would be an easy answer. And as it turned out, his button was quite small and he needed to size up quite a bit. [ 424 more words ]

https://teddybearsjourney.wordpress.com/…/feeding-tube-rel…/

So, Teddy has been complaining of pain from his button since fall. When we were in Iowa City for another appointment, I asked if someone from GI could pop over and measure his stoma to see if he ne…
teddybearsjourney.wordpress.com

Just an informational post because the husband was having trouble coherently explaining this. 🙂 Solid organ transplant recipients obviously take immune suppressive drugs and that makes them more vulnerable to essentially everything that the immune system would usually fight. Viruses. Bacterial infections. Cancers. A handful of viruses in particular tend to cause more trouble than others - mostly, the type that hang out in your body. [ 462 more words ]

https://teddybearsjourney.wordpress.com/…/viral-issues-in-…/

Just an informational post because the husband was having trouble coherently explaining this. :) Solid organ transplant recipients obviously take immune suppressive drugs and that makes them more v…
teddybearsjourney.wordpress.com

<note, that's my sarcasm talking> 37% of children with mild hearing loss failed a grade by 3rd grade. 35% of teens with ADHD drop out of school. 30% of teens with ADHD have failed a grade. 60% of kidney transplant kids have had to repeat at least one grade by the time they are teens (this study wasn't exclusive to kids who had been diagnosed as infants or in early childhood). [ 337 more words ]

https://teddybearsjourney.wordpress.com/…/teddy-is-never-g…/

<note, that’s my sarcasm talking> 37% of children with mild hearing loss failed a grade by 3rd grade. 35% of teens with ADHD drop out of school. 30% of teens with ADHD have failed a gra…
teddybearsjourney.wordpress.com

Well, Teddy had his, I don't know, 300th hearing test this week. He's never passed one. Ever. He passed the sedated ABR but he's never passed an awake hearing test in the booth. And the question has always been whether he's failing the tests because he can't hear, whether he's failing the tests because he can't understand or follow the instructions, or whether he's failing the tests because he isn't paying attention. [ 280 more words ]

https://teddybearsjourney.wordpress.com/…/hearing-test-fin…/

Well, Teddy had his, I don’t know, 300th hearing test this week. He’s never passed one. Ever. He passed the sedated ABR but he’s never passed an awake hearing test in the booth. A…
teddybearsjourney.wordpress.com

Teddy had another hearing test yesterday. After months of hard practice with following verbal instructions and performing an action at an auditory cue, he was able to perform the test perfectly. And he didn't pass.

It's mostly good news, though. For one, he definitively did not pass. Every one of his gazillion other failed hearing tests, it was very unclear whether he wasn't hearing or whether he wasn't able to do the things. This time, there was no doubt. He did a great job.... And as the audiologist has gotten to know him better, she also was able to help him succeed. So there aren't any lingering "well, is it hearing or is it cognitive" questions.

Second, his loss is mild. He would benefit from hearing aids especially if he were in a classroom, but just like with the glasses he needs and the cpap he could use, the benefit likely won't outweigh the struggle of getting him to wear them at this point.

We will learn more in Jan when we go back to otolaryngology in Iowa City (will be seeing audiology as well).

I am chuckling a bit as I consider that this probably makes it harder for him than it already is to stay quiet in quiet environments. (he probably really can't hear me whispering at him to be quiet and he really just doesn't get nonverbal communication like nodding most of the time.)

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So. Last night, Teddy was sleepy and asking me in a sleepy voice to tell him about when he was a baby. What else did I do when I was a baby? (It started when he asked me when we got his IV pole.) So this led to lots of discussion about his infancy. Most of which is depressing. Every third thing I said was that he really liked to snuggle, but he didn't want to hear that over and over, so we talked about hospital, and dialysis, and Nurse Jen, and Dr Jetton, and driving to Iowa City, and taking baths, and getting his tube, and getting other tubes and getting them out. [ 222 more words ]

https://teddybearsjourney.wordpress.com/…/when-i-was-a-baby/

So. Last night, Teddy was sleepy and asking me in a sleepy voice to tell him about when he was a baby. What else did I do when I was a baby? (It started when he asked me when we got his IV pole.) S…
teddybearsjourney.wordpress.com
Soooo… in my ongoing effort to keep this blog a place where I can go to remember T’s personal history, while also keeping friends/family current, here is an update. T’s been getti…
teddybearsjourney.wordpress.com
Teddy Bear's Journey updated their profile picture.
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A monthish late getting this uploaded, but this is Teddy on his 5th birthday!!

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Teddy Bear's Journey updated their cover photo.
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Today is the day I wasn't sure would ever come. One year with no inpatient stays.

Let me start by saying that we are 100% finished with CDD. If I could convince two insurance companies to refuse to pay for our visit, I would. There were some positives to the day, but mostly it w…
teddybearsjourney.wordpress.com
Been a long time. So… Sleep Study, check. (Does have Obstructive Sleep Apnea not caused by tonsils or adenoids. Decided to try respositioning him during sleep first before considering surgery…
teddybearsjourney.wordpress.com