Update on

[Guest guest]

So far I still have my net, though I'm not sure for how much longer.

Took in yesterday to try to find out why he's not gaining any

weight.

Ended up being informed he is not growing AT ALL. PERIOD. Zip.

Zilch. Nada. He's got about a pound and a half region that he's

fluctuated between for the past 6 months. That's it. No height

increase at all. He is, right now, barely touching the 10th

percentile line for height (he was 25th when he was in the hospital

in November) and well below the 5th percentile line (he was at least

ON the 5th last fall).

Also, what was described as " narrowing of the trachea " in his

records here is actually a " deviation " . The doctor showed me his x-

rays that are being referred to in his chart in LaCrosse. Basically

what's happening is that, rather than going straight down to his

stomach, his trachea veers off to the left, then swings back to

center and down. But this seems to be happening BELOW his thyroid,

so we're not sure what that's about.

SO, Thursday morning we're heading BACK to LaCrosse. We're doing a

chest CT scan at 9 am to find out what's up w/ his trachea, why his

left lung has been hurting, and if we can figure out why he's not

growing. Then a CF sweat test at 10. Then we'll have lunch. Then

a visit to the nutritionist at 1. Said not to freak out. He

doesn't really think has CF. He just wants to rule it out,

mainly, but wants to be sure, since his LACK of growth is similar.

Then we'll go from there. And that's what we know for now.

And for any of you who get Channel 19 out of LaCrosse (WXOW) or 18

out of Eau (WQOW), please watch the Children's Miracle

Network telethon/celebration on June 5. We will be on from 11 to

11:30, I believe.

And that's about all I know.

Ami

[Guest guest]

Good Luck, Ami! My best to , you and your family! You're in my thoughts.

Caroline S. AguilaLilith Armunn wrote:

So far I still have my net, though I'm not sure for how much longer.Took in yesterday to try to find out why he's not gaining any weight. Ended up being informed he is not growing AT ALL. PERIOD. Zip. Zilch. Nada. He's got about a pound and a half region that he's fluctuated between for the past 6 months. That's it. No height increase at all. He is, right now, barely touching the 10th percentile line for height (he was 25th when he was in the hospital in November) and well below the 5th percentile line (he was at least ON the 5th last fall). Also, what was described as "narrowing of the trachea" in his records here is actually a "deviation". The doctor showed me his x-rays that are being referred to in his chart in LaCrosse. Basically what's

happening is that, rather than going straight down to his stomach, his trachea veers off to the left, then swings back to center and down. But this seems to be happening BELOW his thyroid, so we're not sure what that's about.SO, Thursday morning we're heading BACK to LaCrosse. We're doing a chest CT scan at 9 am to find out what's up w/ his trachea, why his left lung has been hurting, and if we can figure out why he's not growing. Then a CF sweat test at 10. Then we'll have lunch. Then a visit to the nutritionist at 1. Said not to freak out. He doesn't really think has CF. He just wants to rule it out, mainly, but wants to be sure, since his LACK of growth is similar.Then we'll go from there. And that's what we know for now.And for any of you who get Channel 19 out of LaCrosse (WXOW) or 18 out of Eau (WQOW), please watch the Children's Miracle Network

telethon/celebration on June 5. We will be on from 11 to 11:30, I believe.And that's about all I know. Ami