Trach kids in the news

[Lily's Mom]

Hi Everybody,
My husband emailed me this news story today (click on link below); it is the 8th most emailed story on Yahoo! news today. Â*Thought you guys might be interested to read? Â*These brothers have a rare chromosome disorder (similar to Lily) and are both trached.

It's kind of funny (in that weird, special-needs-mom-humor way); when I read the article, I was wondering what the "catch" was. Â*It's interesting, and of course my heart goes out to the family, but having a child with a trach, g-tube, and chromosome abnormality is so hum-drum day-to-day reality to me at this point, it was like reading a news story like "LOCAL WOMAN, 32, EATS CEREAL FOR BREAKFAST." Â*Know what I mean?

Are these folks on the board or on Aaron's page by chance?

Hope you're all doing well,
Erica (Lily's Mom)

Link to News Story

[christyw]

A situation like this family's would be so hard. There have been times in the past that we didn't know what problems Gaithy really had or would have later on, and I hated that. The doctors checked her for syndromes, growth disorders, etc.... because she was so extra tiny at birth and continues to be really, really small for her age. At first it was so hard not knowing - but with every test having come back fine, and Gaithy being so happy and doing so well, I've been able to forget about it. I really don't care if she's small - I am just happy to have her healthy now. The boys in this article have such uncertainty with the chromosome abnormality AND they are suffering, having problems, lots of hospitalizations. That would be so hard. That last line about your four-year-old holding his chest and barely being able to walk across the floor - saying he hurts----that was hard to digest!

Thank you for sharing this article! Don't you love the way the journalist made the trach and vent issue sound so poetic?? ("blue breathing tubes spill from their necks..." etc....) I'm being a little sarcastic! But that part was just funny to me.

christy Â*

EDIT: I really do agree with Ann's post below. That's what I was getting at about the way the story was put, the way the "little inconveniences" of trached/vented life played out daily, according to the writer. It wasn't quite right.

[Ann]

Erica - I have to agree with you. I'm not sure what the point of the story was. Only those of us that have been there (or are still there) get what the story is all about, because it certainly wasn't conveyed in the story itself. I feel for the family as well, but again, only because I know what they are going through, not because of what the article purported to tell us. Hmmm.

[Jacob's Mom]

Erica, Â*Thanks for sharing. Â*I had to read the article three times. Â*I am with all of you - what is the point?! Â*

It reminds me of a news report I heard a few months ago regarding Terry Schiavo. Â*It was after Gov. Bush ordered her feeding tube reinserted. Â*I may not be exact on this quote, but it went something like this: Â*"Terry Schiavo's life support was turned back on today." Â*My point is that knowing what we know about taking care of our kids, some of whom are on life support, it is hard to hear something like that. Â*Same with this article. Â*Like Christy pointed out about the "blue breathing tubes" - we, of course, know that it wasn't a "breathing" tube.

I also feel for this family. Â*Not knowing what may/may not happen has to be the hardest to deal with. Â*

Thanks again for sharing.

[indiemum]

Thanks for sharing Erica. What a great but sad story. I swear I'll never complain again. I hope that family finds the answers it needs.

Kelly