I know it’s been awhile

Since being home things have been pretty quiet. Zoe can’t go back to school until April (cold and flu season) so she’s home with me all afternoon until I go to work. We’ve played a lot of video & board games and worked on making bracelets and necklaces from a kit she got for Christmas. When this snow finally gives a little we’ll get out more. She’s not supposed to be in large crowds or around sick people so we stay home a lot.

She finally started rehab last week. We had an insurance nightmare with rehab. Because the insurance is through University Hospitals through Zoe’s dad they said we had to use a UH facility for her cardiac rehab. The problem with that is that UH does not offer pediatric cardiac rehab at any of it’s facilities. I got bounced around for a month before I found this out. Since they don’t offer it, we get to take her to Shaker for her rehab which is where Dr. Boyle and the team wanted her to go in the first place. It’s being covered as in-network. She goes twice a week right now and as soon as Dr. Boyle gives the thumbs up Zoe gets to spend 1 day a week in the pool. She’s excited about that.

We’re down 2 medications now. She’s still on 7 with 3 left to go away. Not sure when that will happen but we’re happy to be down 2. Her blood pressure is still perfect. She’s still on her 2 bp meds but 1 has been cut in half.

You won’t hear from me as often. As things get back to normal I have less to update on and the spring semester started for me 2 weeks ago. Between the kids, work and school I’m stretched pretty thin most days.

I do have 1 more thing to add. I received some sad news and Mike and I have decided not to say anything to Zoe about it just yet. We don’t want to scare her. Alex Courville (Zoe’s transplant friend) is back in the ICU in a coma. I don’t have all the information yet but from what I understand Alex is CMV negative and the heart she received was CMV positive. She was on a medication to kill the virus in the heart but it seems to have been unsuccessful. Alex’s body is being attacked by the virus. Even Though she takes her medicine her body is showing no levels of Cellcept or Prograff which are the 2 crucial anti-rejection drugs. I personally am devastated by the news. Alex was doing so well. She sent me a myspace message 2 days ago asking how Zoe was. My thoughts go out to her and her family. I plan to get up there tomorrow to see her. Here is a link to Alex’s site again.


One comment on “I know it’s been awhile

  1. glad to hear Zoe is doing good. Yeah two meds down! Sorry to hear about alex, that’s awful! Thinking about all of you…

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