[tri-med] Re: Need reassurance

----- Original Message ----- 
From: "Julie Johnson" <jules519@xxxxxxxxxxx>


Hi Julie,

I remember Emma Grace.  I'm so sorry you're having such a struggle.
For the most part, our caregivers are great...but we DO have to push
for what we think is best for Mari.  Mari has a large size VSD, open
PDA, bicuspid aortic valve, and pulmonary hypertension.  We just
found out that she has severe apnea.  We're proceeding with
tonsil/adenoid removal sometime in January.

The ENT is supposedly the best in our country...but he just kinda
dismissed Mari in her initial visit with him a few years ago.  I was so
angry that a simple x-ray showed her incredibly small airway.  It's so
bad, if we chose NOT to do the tonsil/adenoid removal, she'd need
a trach.

As I think back to her birth, I'm made that the NICU automatically
put in an NG tube.....BEFORE they tried to feed her.  We didn't
know any better then....it seemed reasonable because many T18
kids do need a feeding tube.

We have always treated Mari like an asmatic.  I believe it's one of
the reasons she's done so well with her heart & lung problems.  It
just stinks to have to keep fighting!

Just keep pushing the edges for your little fighter.  I truly believe that
our kids (with our help pushing) do make their own way and amaze
people!

Blessings,
Chris mama to Mari full T18 (3  yrs.)
Tipp City, OH
http://photos.yahoo.com/MissTippCity
http://home.earthlink.net/~loganfamily/index.html

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: