Mighty Beautiful Heart

This past weekend, Alexandra had her first dance recital.  It seems so ordinary for a young girl to have a dance recital, yet it truly is miraculous!  You see, two years ago at this time, Alexandra had just started walking again and was in physical therapy to go up and down the stairs, as her legs had grown so weak during her hospital stay.  So, for us, the fact that she is actually dancing now is amazing!

She has been taking a combination ballet and tap class since September and has done so well.  In fact, just a couple of weeks ago, her teacher invited her to try out for dance team…the only girl in her class to be asked!  We are so very proud of her!

Now that she has friends at preschool, she is finding out about all kinds of other activities that her friends do.  While we never want her to dwell on the fact that she will have limitations, we do need to be realistic.  When she came home one day asking if she could take gymnastics, we simply told her we needed to ask her cardiologist.  We did, and he said she shouldn’t, so we told her that gymnastics wasn’t the activity for her but that she could continue dancing.  That answer seemed fine to her, and she hasn’t asked about gymnastics since.

The fact she was asked to try out for dance team at 4 1/2 shows us that there are activities in which she can excel…it just may not be exactly what all her friends do!

Have you had to tell your CHD child that he/she can’t do something?  If so, how did they take it?

As we approach Father’s Day, it’s hard to believe that two years ago, Alexandra was still in the hospital recovering from her Fontan during what was the most hellacious month of our lives!  Now, two years later it’s funny that my biggest stress has become where to go on vacation!  I know people who have already taken their vacations and many more who have had their vacations planned from start to finish for months now.  We’re still trying to figure it all out.

We could drive to a beach just a few hours away and have a fine time.  However, now that Alexandra’s cardiologist has given us permission for her to fly, it opens a whole new world of possibilities.  That being said, the words “If you fly, be prepared for her to turn blue” spoken by her cardiologist some time ago still ring in my head.  Therefore, if we fly, we would want it to be a short, non-stop flight to see how she tolerates it.  Of course, flying has become such a hassle with all the additional security, plus Alexandra has a couple of compounded medications which require refrigeration, which further complicates airline travel.  While all this narrows down the options, I have still spent countless hours on the internet becoming downright obsessed with trying to find some ideal place that provides everything we want at a decent price.  Every time I come up with one idea, I find numerous reasons why it could present problems.  Most frequently, I think about how quickly we could get to a decent hospital should something happen. 

Last summer during a weekend trip to the mountains, Alexandra got what turned out to be food poisoning on the way there.  At first we only knew that she couldn’t stop throwing up and was showing all the signs of dehydration.  We ended up having to take a 1 ½ hour ambulance ride (in the rain, no less!) to the nearest hospital where she had to be hooked up to an IV.  We spent most of the night there until she was released only to have to drive back 1 1/2 hours to where we were staying in the mountains.  That experience certainly put a damper on the rest of the weekend but also haunts me as I try to plan this year’s vacation!

Of course, while I’m driving myself absolutely crazy over wanting to take her someplace special, the reality is all she really cares about is that she’s with Mommy and Daddy, and the hotel has a pool!

I would love to hear how others have decided on where to go for vacation!