Hi from Michigan

livysmommy · #1 11-06-2007, 10:12 PM

Hi All,

We are new to the website but not new to the world of trachs & vents. Olivia was diagnosed with CCHS at 18 months after a few life threatening events and was eventually trached when nothing else would work and keep her pink!

She is 6 years old now and had done pretty well, we've had a rough couple of months with a recurrent pneumonia that we can't get a handle on and she recently just spent some more time in the hospital for her 2nd bronch in 3 weeks to do some "deep cleaning". She has some cardiac issues, a newly diagnosed endocrine issue and a questionable metabolic concern so we seem to be adding more services instead of decreasing our Dr. appts.

We do not have nursing any longer and Olivia attends a regular school for 1st grade and participated in cheerleading and soccer. She's our miracle girl who is a inspiration in every way. She is the big sister to Aubrey 4, Isabel 2, and Colton who's 1 so she's never gotten lots of "special" treatment our house is too crazy for that. She's just been a regular kiddo with lots of extra stuff who has to have her sleepovers at our house.

I've been reading many of your posts and find everyone's stories very inspiring, the Ruby's story had me LOL, we had a similar experience at Lowe's last week...needless to say we did not get the new bathtub picked out.

Looking forward to getting to know all of you and your special babies!

JWorthington · #2 11-07-2007, 03:56 AM

Hello Michelle, and welcome. Glad you finally found us. There is a lot of experienced parents on here who can give excellent advice if needed and loads of support at bad times (we also have a few laughs). It sounds like Olivia is doing really well, apart from the pneumonia. It's good to try and give our kids as normal a life as possible.

Julie

My little figther · #3 11-07-2007, 06:28 AM

Welcome, we share the same first name Michelle and a trach child (My grand son Cedric) maybe this one thing that we would have rather not share. Cedric is 16 months old and has been trached 3 weeks ago. All the people here are wonderful we share concerns, care and laughs. Glad you found us
Michelle

Becky · #4 11-07-2007, 08:21 AM

Hi Michelle,

Welcome! I'm an adult with a trach. There are a few of us on the boards. I'm looking forward to getting to know you and Olivia, As others have said everyone here has lots of experiences and stories to share. You'll come to find that they are a very loving and caring group of people too!

Btw, I'm in Michigan also, in the Metro Detroit area(Utica/Sterling Heights area) If you don't mind sharing, where in Michigan are you located?

Becky

alizesmom · #5 11-07-2007, 08:24 AM

Hi back from Pennsylvania. I'm Karen and my son, Alize is 4 1/2. He's been trached since infancy. Glad you found up. Karen

faywrayy · #6 11-07-2007, 07:14 PM

Hey there! I have 4 kiddos also, but my youngest is trached for upper airway obstruction and subglottic stenosis. It's definitely a busy house here, but Kate's not afforded much special treatment, unless you consider the youngest of 4 and only girl being special

.

This is a great board, a great support system and a great bunch of people.

livysmommy · #7 11-07-2007, 08:13 PM

Thanks everyone for the great welcome!! It's nice to finally be able to communicate with people who get that we hoard supplies for "just in case", travel with lots of stuff, and can appreciate a good cough with lots of "neck boogers"....I'm not sure what took us so long, I think we've only recently been able to catch our breath and reach out.

Becky, congrats on your wedding, we're north of you in Freeland (right by Saginaw, Bay City, & Midland). We spend lots of time in Ann Arbor w/ Liv.

RobiL · #8 12-07-2007, 02:09 PM

Welcome to the boards.

Glad you found us.

I've been in this world(trach) my whole life.(ok i did have the trach out a total of 16 yrs).

Can't wait to get to know more.

I have 4 kids also. 3 of them are triplets and one's name is Olivia. My girls just turned 6.

Anyways, welcome to boards again.

Robin

lovemymak · #9 12-08-2007, 08:18 PM

Hi Michelle!

Welcome to the boards! It's great to have another CCHS around. It would be great to chat some time. I see that you also have an Aubrey. Mine just turned 5, and is also VERY difficult!

But I love her to death! I hope things start to improve for Livy.

Sarah

Isaac'sMomandDad · #10 12-09-2007, 04:35 PM

Welcome!

Looking forward to getting to know you.

We just have the one son, who just turned one (yesterday!). As the first grand child and first great grand child I do have to admit he gets the special treatment, but not really b/c of his trach.

Lara