Thursday was a busy day. First of all, it was Tom's birthday. I feel so bad for him. Every year, it seems, is a crummy time of year for his birthday. It's Easter and his birthday that gets hit. Here's the history:
2007 - Harlie's first Easter. She spent March 6th to May 18th in the hospital for her 2nd heart surgery and recovery.
2008 - She had her nissen fundoplication surgery (a stomach wrap around the esophagus to stop vomiting) during this time period. And we were gearing up for her first bone graft jaw reconstruction.
2009 - Her Fontan was scheduled for that time period, but she got pneumonia and was in the hospital in DC. And a few weeks later, she had her 3rd heart surgery.
2010 - Was great! That spring break was the week that we did something different Monday through Thursday (like going to the park, Busch Gardens, etc.).
2011 - Spinal fusion surgery - in a body cast.
I'm beginning to have a problem with Spring. It's just not a good time of the year for our family.
So, I decided to take Harlie to her physical therapist on Thursday (remember Therapy Thursday?). She loves to go and I thought that Traci could get her up and about more there than here at home.
And it worked! She put her on a wedge thing (belly down) and she did push ups! It was so cute!
And she even walked in the walker! Traci put a belt around Harlie and held on to it from the back for support.
After PT, we saw her speech therapist. Harlie wore her PMV for the session. But, by the end of it, you could hear some struggled breathing. It was wonderful to hear her saying words more clearly and loudly. I didn't realize how long it's been since I've heard her "speak" while wearing her PMV. But it hurt to hear her breathing at the end. Just sitting back a little makes a big difference in her airway. Total bummer. I really thought there was more improvement. I can't begin to tell you how incredibly disappointing that is.
But, at least she can tolerate it when she's upright. So, that's something. And certainly better than nothing.
So, after coming home from those appointments, Tom and I went out with some friends to celebrate his birthday. We had a great time. There is nothing like laughter to warm the soul. So healing!!!
On Friday we had Harlie's Little Feet Meet. I'll have to blog about that later. Too tired tonight!
Thanks!
~Christy
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3 comments:
Christy I'm thinking maybe the cast restricts her breathing some. Maybe that's the point of what you're saying, but I bet once it's off she'll do much better. I assume you have a PMV, have you tried another brand that is easier to wear. Maybe while she's in the cast....
It's great she can still do so much. I'm really impressed. And while I know how your personal lives suffer, from the outside it sure looks like you do a great job. Happy Birthday Tom, you're a great husband and dad!
Susan - the angle at which she's sitting/laying is causing her jaw to go further back into her airway than when she's sitting upright. At least that's the way it's looking. We have the purple PMV and the teal colored one.
I think once the cast comes off, we'll see how she does and then I'll focus on that again.
Thanks!
~Christy
Well, you guys certainly know how to cowboy up as they say in the south. You just keep on keepin' on. Medical maintenance can be so exhausting. I hope things get better and next birthday is better.
Take care,
Christamae www.caringbridge.com/ca/oellacz
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