One more day...

Hi everybody,

I’m sorry I haven’t been writing lately. I’ve been keeping myself busy trying to make the time go by. But I must tell you that I loved hearing that so many of you have been wondering where I was. It is nice to know that my entries were missed. I was telling a friend tonight that writing in this journal has really helped me get through this past year. Knowing that you are counting on me to update you helps me find something to be positive about every day. So, thank you.

Well, Harlie had a rough week. We took her back to the pediatrician for an ear check to make sure that the new antibiotics were working. Her ear looked better, but I don’t think the meds are working on anything else that might be causing her coughing. I didn’t see any improvement, that’s for sure.

On Thursday night, our night nurse couldn’t come in and Harlie had a terrible night. She was up coughing most of the night. I think the longest she slept soundly was an hour and a half. On Friday she vomited a lot. And I mean, a lot. We also had another helmet fitting. I really can’t believe how rounded out the back of her head is getting. I just hope that this hospital stay doesn’t set us back on all the progress we’ve made.

Tom’s mom is coming up tomorrow (Monday). Her and Cal will stay here with Murphy while we’re in DC. Tomorrow I will get us all packed and ready to go. I will also find out what time we have to have Harlie checked in for surgery on Tuesday. It will be nice to know what time we are leaving – I guess just to have some plans set in place. Sometimes just knowing the smallest of details in a time of such uncertainty helps a little. Sounds hokey, but it’s true. We will also find out if a room is available for us at the Ronald McDonald House. Now that I've stayed there several times, I am much more comfortable. It is just kinda hard to get used to sharing space with strangers (like a bathroom).

Our social worker from DC called and told me that after the surgery, Harlie will go to CICU (cardiac intensive care unit) since she’s a cardiac patient. That made me feel much better. Plus, it just makes me feel better to know that we will get to talk to her cardiologists there about how this surgery fits in with her cardiac issues. I have a lot of mixed emotions about this surgery. On one hand, I am so glad that it is almost here and I am so hopeful that it will be the “cure” for her breathing issues. But I am also terrified. All her other hospital stays were all longer than originally anticipated and in every single one, we learned something new, that was bad. So, I think being scared about this one, which is pretty darn major, is just natural. Hopefully, this one will be the one to turn everything around for her, and for us. If it works, and helps her breathing, it will have a wonderful domino effect that will be life-altering.

Well, one more full day to go… Please keep her, and us, in your prayers. Now, I am going to try to go to sleep. Thank you for your support.

Take care,
Christy