Tuesday, April 13, 2010

Alexis' Friends in CHARGE

Many frequent Alexis blog readers know about Moriah, one of Alexis' buddies in CHARGE syndrome.
Moriah has basically been in the hospital November 2008 after having major heart surgery done by Stanford Hospital doctors.  Moriah and her family are troppers.  They show love and goodness in each and every day.
Moriah has the "typical" fighting spirit that makes all of us families proud to know Moriah.  Moriah needs a trach and a ventilator to help her and because the Northern California Bay Area doesn't have home-ventilator service -- Moriah is still in the hospital.  They will remain there until Moriah is strong enough to be without a ventilator. 
Their situation horribly pains me since Alexis was home at 2.5 months and had other hospitalizations but all relatively minor.   For those who haven't had a baby in the hospital for an extended period of time, this is like one day taking your child to work and then accidently leaving them there with strangers.  I mean, we all like work, like to go to work and manage to get ourselves to work, but it's work.  It's just that.  But now if your child is stuck there, you're going to get up early in the morning to get there to see them.  You're going to stay all day as much as your weary body can handle it to be with them.  To have to "drive" to visit your child and to leave your child each night, it's really horrible.  Victoria and Justin have been doing that every day.
I sent Victoria an article (Being a Kid: Thriving with a Trach and Vent by Deb Millard) that she shared on Moriah's blog.  It speaks to the struggle and the ability to manage a Trach / Vent at home with a relatively active child.
While we don't always discuss Alexis' medical details here, sometimes they bore me.  We have avoided a Trach and we have avoided a Vent.  But Alexis sleeps every night with a CPAP, which basically dictates our family routines and activities.  In a lot of ways, we've had the easy way out - but I can feel the struggle that Victoria and Justin go through to provide the best for their daughter.  It pains me to know that they don't have the joy of having Moriah playing happily in the next room (like the videos we get to show of Alexis).  It also pains me that these services (home vent care) are available in different parts of the country but not everywhere, meaning that Moriah has to stay in the hospital. 
Moriah is a blessing.  Alexis is a blessing.  We hope that one day we'll get our lives arranged so that they can meet.  I'm sure they'd have an awesome dance party!!

Catherine

2 comments:

Justin and Victoria Nelson said...

Oh catherine,
thank you for this, and for your continued friendship and support. you are so right. moriah and alexis ARE blessings. and they will totally hit it off dancing WHEN they meet one day. we will get our baby girl home one day, and hope to make it possible for other families like us to be home with their child on a trach and ventilator too...thanks again for the article. i know it encouraged other families as well.
we just need to show these bay area peeps what's up! ;-)
much love and lots of hugs,
victoria

Kurby Family said...

We keep up with Moriah on her blog as well, and are always sending well wishes and prayers their way. I think the article you sent was great, and your posting very well stated. We hope they can get her home soon...its been way too long!