Updates before we go back to Cincinnati on Monday

Note:  I started this posting last weekend (Sun, May 19) and never finished it.  I'm going to go ahead and post it now without the pictures I wanted to add and start a current entry today (Sat, May 25)

The past three weeks have been intense to say the least.  We've been through a lot watching Faith's jaw change dramatically, doing her treatments twice a day, suctioning her trach over 20 times a day, sometimes every 10-15 minutes, dealing with the constant drooling, doing a nerve-racking procedure to wind back her pins and then pull the wires tight again, and most of all, missing her beautiful voice and trying to communicate with sign language.

I wont sugar-coat it, it's been really hard work.  For example her treatments don't take that long, but are fairly involved.  We start with cleaning the pin sites, brushing as least her front teeth with a toothette sponge (little sponge on a long stick for rubbing in the mouth after surgeries), applying a little bacitracin and then turning her pins 1 mm in the morning and the whole routine again at nighttime.  We've been taking turns, Fred usually does the mornings and I do the evenings which has been nice to have him share the work with.  Faith really doesn't like any of the treatment and she kinda pushes a little on my arm/hand to try to limit how close I can get to her face, but she says it doesn't hurt when we turn the pins, so we don't feel as horrible as we would if we knew we were hurting her.

But as hard as it is, it is also amazing, to see her jaw double in size, to see her breathe through her nose for the first time in her life and to see her bear everything that she has to go through with such bravery.  Yes, she did cry the morning before the surgery, and there have been tears a few other times, but I don't know an adult who could go through what she is going through with as much acceptance and grace.

Anyway, I wanted to share a few highlights from the last week or so.  Mostly Faith hasn't wanted to do a lot around other people, but slowly she's been warming up.  She had no problem going to a Rockies game last Wednesday, against the Yankees (which meant Fred and Anthony wore Yankees gear and Faith and Mom wore Rockies colors).  We were able to request handicap seating for her, which really helped with being able to suction her without feeling self-conscious and having room for extra stuff.  It was chilly but we we bundled up and it was a fun evening.

On Thursday Faith's teachers came to visit her which she really enjoyed which I think I blogged about last week.  Over the weekend we didn't do too much - I was supposed to run a 5K race, but my knee is hurting so I just ran a very slow run, for a time not worth mentioning! 

On Sunday, Fred and Anthony made me breakfast for Mother's day and we had a really nice day.  The butterflies came out of their coccoons that morning and then Lauren, Carly, Ryan, Dana, Aaron and Hallie all came over and hung out for the afternoon with us.  It was a beautiful day so we sat out back while the kids played.

This last week was busy too.  Fred tried to take Faith to the Channel 7 News Station to meet some of the reporters that Fred has become friends with over Twitter!  I say "tried" because when they got there Faith just started crying and Fred had to give up after 15 minutes and take her home. I think it's really cool that Fred has become friends with them -- he started following them on Twitter a few months ago, and went to meet them at a meet and greet they were doing at a coffee house and has been tweeting with them since then.  Fred studied broadcasting in college, so it's nice for him to make friends with people in the business! The ironic thing about him going to meet them that day at the coffee house was that he was telling them a little bit about his kids and about Faith and they just happened to air a story about Chloe that same day!  He saw it later on and tweeted them about it - Chloe and her family have become good friends to us since we got to visit her as a baby.  Faith and Chloe have roughly the same syndrome, although Chloe has never been diagnosed and could have some other things involved compared to Faith.  Chloe has also been going through exactly the same surgeries with Dr. Gordon here in Cincinnati - twice we were supposed to be here at the same time but the first time Chloe's surgery had to be delayed due to insurance coverage issues and the second time Faith's surgery was delayed because she got sick (in February).  sorry for that long tangent!!

On Thursday Anthony had his field day and Fred took Faith to go watch.  Surprisingly she seemed pretty comfortable there around all the kids at his school.  They all know her and are always happy to see her, plus she has been going with Fred to pick Anthony up after school for most of the time she's been wearing the RED device (halo) on her head.

On Friday Fred took Faith to her own school for their field day and she saw all her classmates!  They were so happy to see her and although she was a little shy, it seemed liked she had a good time seeing them too.  It worked out perfect since we are leaving on Monday to head back to Cincinnati and she won't be back until after school is out for the year.  We are hoping to throw a welcome home party for her and invite all her classmates, but I have yet to get it organized!!

I wanted to post some pictures for each of these activities but I'm too tired tonight.  I'll try to find some time soon!