Can we do an introduction?? Its been awhile since any postings...

[me_and_the_boyz]

Just wondering! :) I dont visit here much, but when I do it seems like its all the same. Which means (hopefully all of us are well :) right?

I am Casie. 27 year old mommy of 2 boys. My oldest is SKyler, hes my trach baby. He was a full term boy born in august of 02. Immediatly after birth went into distress. Mostly they thought due to lots of fluid on lungs cause of c secition. But turns out he had a very small recessed chin. His toungue was set farther back than normal and blocked his airway. He was diagnosed at bitth with Pierre Robin Sequence. He also had a cleft palate. He was transferred from our small town hospital to Seattle Childrens 3 days after birtth. He got to stay there for 6 more weeks. During his stay he was also diagnosed with a genitc disorder called Stickler syndrome. Its a connective tissue disorder. Affects the eyes ears and joints. He has had surgeryss to fix his glaucoma (congential secondary to stickelrs) hypospadious repair and at 13 months his palte was repared. But we tried all sorts of things to avoid his trach. BUt in september of 02 he was trached and 2 weeks later sent home with us!
it was a bumpy road, but became a way of life. After surgeryies to removed tonsils and adnoids.and gtubes cause he could not safely drink or eat. He was finally decannulated in may of 05. It was amazingly wonderful! We were able to live amuch more normal life, no homecare nurses..no loud machines...no awkward stares or explanations.
But in July of 07 in a normal routine sleep study they found he was still suffering from OSA (obsturctive sleep apnea)

We have been able to avoid any sort of jaw distractions at this point but more and more its becoming clear its going to have to happen. :*( Skyler after 4 months of failed attempts to keep him on a bi pap machine at night to sleep was trached again in feb 08.

Its sad. And amidts all this we were dealing with all his developmental delays, screening for autism and adhd. So it seemed like we had finally gotten over one hump...and seemed to go backwards.
skyler is doing great. We are fighting a cold right now.but nothing major. He asks all the time where our trachs are, and why his little brother doesnt have one. Its pretty cute.
They say it will be most likely another 5 years. He just needs to grow more. But that seems like an eternity. If there was a way to keep the trach out durning the day adn have it at night, aw...that would be great! Dreams are dreams.
So yea, thats my storry why I am here.
Would love to hear more about all you!
You are all amzing woman, I know....I feel your pains, joys and struggles each and every day!
Casie
mama to 2 boys. Skyler 6 and Seth 1. "Best of both worlds"

 

[Homeschoolmom99]

 My name is Barbara my special child is Anthony he has Aspergers/HFA. He is nine and I homeschool him.

Sorry I am so short just an intro!