Surgical update

It's 1:30pm.  Just got our third surgical update:  they've harvested the bone from her leg and they are getting ready to make the transfer to her jaw. She's doing well.

She had a great time traveling yesterday.  She loves the plane.  She's not much of a listener though (I guess we all have our faults) so it's a bit of a struggle to keep her in the seatbelt when she's supposed to be buckled in.

She always has fun running around a hotel room and jumping on the bed, of course. The hotel is awesome (thank you to John and Jackie Hudson for treating us so well)!  And it has so many great places all around it.  For some reason she loves to go around and turn on every light, then goes back and turns them all off.  Unfortunately this is more annoying than cute. And neither one of us wanted to yell at her.  And it hurt us both to see her innocent smile knowing she didn't really have a clue as to what was about to happen.

We decided to tell her when we woke her up.  I don't know if that's a good call or not, but it seemed unnecessary to have her go to sleep with that on her mind.  I woke up at 3am. I had to give her water through her g-tube before the cutoff time (4am). But I guess I was afraid I would miss it or something. So I gave her the water then, thinking that I could go back to sleep. But that didn't happen.

Anyway, we told her and she said "no" through tears. I think it's safe to say that we (Tom and I) both had to fight to keep from crying ourselves! It was that sad cry that says "there's no use fighting, because I'm not getting out of it." ugh. And what do I say?  If I say they are going to try to fix your mouth, will she think that something is wrong with it? Of course there is, but I don't think I want to call attention to it if she doesn't know. 

Anyway, I said that she might not be able to open her mouth when she wakes up, but it won't stay like that for long.  And some other stuff. I don't even know if she was listening. Don't think I'd blame her if she wasn't. 

We walked to the hospital and she seemed to enjoy that.  She found a little toy cow in the waiting room and her and Tom played hide and seek with that for a little while. Then a little boy (2 years old maybe?) came to play at our table and Harlie gave him the cow.  It was so cute.  And surprising considering she was still playing with it. Made me wonder if she knew what was in his future and wanted to be extra nice. 

She was fine until we went back to the pre-op area where the beds are separated by curtains.  That's when she started to cry and hid her face in Tom's chest.  She didn't show her face until the Versed started to work.  Then we had to lay her on the bed and say good-bye.  Usually I'm fine and I can't remember the last time I cried when I had to do that.  It's been years and years. Heck, I've had to do it more than 30 times!  But, her resigned cry got to me today. I couldn't help it.  And I hate to cry - especially in front of strangers!  I signed "I love you" and she just looked at me and cried, and didn't sign it back. Not that I'm surprised or that I blame her, but it didn't help matters. 

One of the surgeons told us that they would take good care of her.  I thought that was nice. 

Then I went and put my running shorts on and headed out for a 5-mile run. It felt awesome. It was - by far - my best run in months and months.  I ran part of the Emerald Necklace and it was awesome.  Then I went back to the hospital and had breakfast with Tom.  Then we went back to the hotel to let me shower.  Getting ready to go back to hospital was a challenge.  I just felt that I looked... bad.  My hair didn't look good (there's more to that story, but I'll have to tell you later).  My clothes didn't look right.  I was just "off".  Grrr!

Then we took the long way back to the hospital (we needed to get me a pair of cheap sunglasses and Tom a backpack so we could share the load of stuff we're carrying around.  

The weather is beautiful and it is awesome to be able to get out - it has made the day WAY more bearable than I expected.  And the staff is great and they encouraged us to get out.  They have been calling us every 90 minutes to give us an update.  When we were in the waiting area earlier, there was a mom who was tapping her foot - out of nervousness I'm guessing.  And while I understand that, I just don't think that's very mentally healthy.  At least not for me. Or Tom.  

So, I'm sitting in the garden now writing this and it is awesome.  Well, the time has to pass either way, might as well be in a beautiful environment, right?

Well, I'm going to sign off for now.  I want you all to know how much we love having your love and support through this.  I haven't been able to get on Facebook in a while, but Tom told me that people are posting pictures of twearing We Heart Harlie shirts and writing it in the sand.  We are so blessed to have you all in our lives. We really couldn't live this life without you.  So, thank you!  

Much love!
Christy xoxo

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