Tuesday, May 8, 2012

Quick updates

I have so much to tell you - but life is not letting me stay in front of my computer!  Here's a snippet of what's going on...

Fundraiser Update

Wow!  Can't wait to share more details.  There are so many good people around us and I am being overwhelmed every day by their generosity and support!  I will do a post in the next few days highlighting the raffle items and some other important stuff.  Stay tuned!


I spoke with some people from Boston Children's Hospital today.  I got a tentative schedule of pre-op stuff.  We have appointments July 24th through the 26th or 27th.  She needs to confirm a couple of more things before she gives me the okay to book the plane tickets.  I think the only thing that's questionable right now is if we have any appointments on the 27th.  Which, I really hope we don't.  Four days of pre-op appointments seems really, really overwhelming and exhausting.  Heck, if it takes four days for the pre-op stuff, what the hell is the surgery going to be like?!

She also confirmed the surgery date for August 24th.  The surgery will take 10+ hours, which is terrifying.  Makes my stomach turn just thinking about it.

Sadly, I haven't been able to tell Tom any of that yet.  We barely saw each other tonight.  Murphy had an art class and then Cub Scouts and Harlie had a Daisy meeting (which, she couldn't even attend because she's freaking sick again, or sick-er than usual).  The moms had a fundraiser meeting so I went and left Harlie at home with Brandy.  Once we all got home the big news around here was that Cooper went poo poo in the potty!  Halle-freaking-lujah!  He was so darn proud of himself, it was the cutest thing ever.  We have been working with him forever (okay, about 10 months) and I had true fears that he wasn't going to be able to go to preschool in the fall because he wasn't potty trained.  So, that news trumped crappy surgical stuff that we don't want to talk about anyway.


So, I really don't know what's going on with her.  She's basically been dealing with whatever she's got since the beginning of April.  She's had some better/worse days, but the one thing that's been consistent is that she's been unable to wear her cap (the thing that closes the trach and allows her to breathe through her mouth and nose).  This is bad because she knows she can't talk as well without it, so she doesn't even try most times.  She's also had a few fevers (which is very out of character for her).  I had to pick her up early from school today and she slept most of the afternoon (again, VERY out of character for her).  So, I called her pediatrician.  She said that she wants her to see her pulmonologist tomorrow to get a pulmonary function test and an x-ray.  So, we have that appointment at 9:30am.

I have so much more to tell you, but am falling asleep while trying to type this.  I'll post more later...

Thank you so much!

1 comment:

Susan said...

Christy I hope Harlie checks out okay. Crazy busy is what you are. Potty training is big news. Preschool will give you some hours on your own, right? That'll be nice. I'm glad things are going well with the fundraiser and it's good that things are falling into place for the trip and surgery.