Saturday, March 11, 2017

As World Down Syndrome Day approaches...

Well, we're approaching World Down Syndrome Day and we've got some things going on at Casa de Theodore.  Before I get to the Tera related news let's talk preemie struggles.  Our poor little ZoZo got hit with a nasty virus that just won't let go of her.  And thanks to those damaged little lungs inside that sweet perfect body, it's been a rough seven days.  As a result of a fever and coughing fits that just got worse, I ended up taking her into the ER last Tuesday night.  I suppose as a sign of progress, we actually got sent home and not admitted.  Along with her discharge, she was prescribed a three day course of oral steroids designed to try to prevent her from returning to the ER.  Tom and I typically cringe at the mention of oral steroids as they have, at times, turned our kids into mini rage machines.  But if we wanted to help her get through the virus, it seemed like the best plan.  She actually got through it relatively unscathed, until of course right after the last dose.  The last 24 hours have been a little challenging, but we're hoping the worst is behind us.  Unfortunately, her nights have been uncomfortable for her, full of coughing to near the point of vomiting, and difficult for us to know what she's going through.

As a result of a crazy week at work for Tom and me actually having some sick days still this year, I was home with Zoey for Tuesday, Wednesday, and Thursday.  In that time I got some serious snuggles, some philosophical discussions (from the perspective of a two year old), and a little flashback to my time with her when she finally came home from the hospital.  What these types of times remind me of is, why she's still here.  See, around the age of one Zoey went from being my mild-mannered, go with the flow, easy to please baby, to a dramatic, emotional, feisty, stubborn, tough toddler.  The past year and a half has been challenging as she throws tantrums for little to no reason, she's not thrilled being around new people, she wants what she wants when she wants it and completely on her terms, she is insanely independent, and frequently doesn't handle being told no or what to do, well. And she is very much unlike Tera was at that age (except for the independence).  But in these past few days, I remember those first few days when two different doctors told us that our little 2.5 pound baby fighting for her life was feisty.  It's exactly all these challenging traits that are what kept her with us and despite the frustration that goes along with them, it's what makes her Zoey.  It's what will make her the independent, strong, and successful woman I know she will someday be.  We just have to make it until then...

And now for our big girl.  Over the past six years Tera has seen her cardiologist regularly to check in on the progress of her VSD.  She was born with three holes in her heart.  The biggest, and most concerning, actually closed very quickly.  The ASD closed by the time she was one, and all that remained was the VSD.  For about two years it was just a watch and see what happens.  Then about two years ago he saw that tissue had started forming over the hole, which was not what they wanted.  However, it was only problematic if the tissue formed faster than the hole was closing.

This past Monday she had her yearly checkup.  I had Tom take her, but I had a feeling this one wasn't going to go as well.  And in short, it didn't, for a few reasons.  First, she was not happy about the echo and got very worked up.  Second, were the results. Basically the tissue that has been forming is more of a flap now and it's moving back and forth, which is a new, not so good development.  Also, she has leakage in her aortic valve which is also new and not good.  As of Monday, he was going to confer with his partner, but more than likely plan on a sedated echo in May, and schedule open heart surgery for June or July.

However, after meeting with his partner and reviewing the results, they've decided to wait until next year.  She's not in any danger and it's not affecting her day to day life so they both feel comfortable with waiting.  So as of right now, we'll schedule another echo for a year from now and if the situation is the same or any worse, he will most definitely be doing the surgery.  Since heart problems are such a common occurrence in individuals with DS, it's less likely to resolve, but since it's not a necessity right now, he wants to wait.  We trust his opinion and feel more comfortable knowing he's already sought another opinion.

Needless to say Monday was a rough day, which led to a rough week.  We called our immediate family and friends to let them know and worked through the process of accepting our child was facing open heart surgery.  We had always prepared ourselves for the possibility of surgery, but it's still very difficult to know.  Now that know it's not happening this summer, it's a relief, but at the same time I struggle with having to think about it for another year.

Think what you will about how I view things, but I have to deal with things in my own way.  At this point, it does me no good to think that it might not happen, because then if it does, I will be devastated all over again.  I need to accept that it will happen so that I can think through it.  So if you talk to me about the situation, please don't try to convince me that she still might not need this very serious surgery.  Pessimistic view or not, this is how I  deal, and I've dealt with a lot.

So as World Down Syndrome Day approaches (on March 21st) please consider helping us spread awareness and love.  Share a fact (if you need help, I know plenty), share a story, share a feeling, share an experience, share a change you've gone through since knowing someone with DS, share a picture, or share something that you'd like to know.   But please, celebrate this day with us and our family.  Wear your Team Tera apparel with pride and know that with all your love and support, we'll get through this and anything else.