Her head and neck are straight!!!

Faith woke up today and her head was straight! She's been doing good while sleeping in a neutral position but usually as soon as she wakes up she tilts it down and to her left and is in some amount of pain. Today she kept it straight all day (although holding it still and not turning yet) and was in no pain most of the day!!

All Dressed Up!

To go to Anthony's baseball game!

We're Home!

We drove Cincinnati to Indianapolis and flew home yesterday which was a difficult day for Faith. She has been working on straightening her neck, but you can see its not stopping her from smiling!!

We think the surgery has made her left side look a lot fuller, but I'll wait till she gets her neck straight to do a before and after comparison shot.

Bowling Games

Faith having a little fun with Anthony in the game room.  Today was a pretty good day except that Faith is still keeping her head cocked at an angle and not moving it yet.  We have an appointment tomorrow, so hopefully we can get some ideas on what else to do.

Discharged!

Today was a very busy day as Faith was discharged! We had to buy a lightweight stroller and got her into the Ronald McDonald House around 5:30pm. Just finished getting her settled into her makeshift bed on the couch, all her medication doses scheduled and given and now I can go to bed!

Our main issue right now is trying to get her moving her head normal again. She doesn't want to move it hardly at all. Then we have a final dr. appointment on Friday and then we fly home on Saturday.

More tomorrow.

Gone Fishin'

Out of Bed Today!

I'm too tired to write tonight, but wanted to let everyone know Faith got out of her bed today, walked to a wheelchair and got to go sightseeing around the hospital including to the playroom, where she got out of her chair and walked some more! I didn't record her walking as I was helping her, but I'll post a cute one of her and Anthony playing together.

A Smile!!

Faith made some good progress today.  First they removed the drain from her back.  Here's a pic of her bandage on her back and the drain that was inserted to drain excess blood and fluid that was building up around the donor site.  The first couple days they emptied it every four hours and got a fair amount of blood in it, but by this morning they said it was mostly clear and very little quantity so it could be removed.  She was pretty unhappy about it being pulled out, but I think it will make it a lot easier for her to start moving and feeling better.  The scar on her back is smaller than I thought it would be, which I'm very grateful for as it was really hard for us to think about her back having a big obvious scar on it.

Later this afternoon Faith sat up for the first time.  An Occupational Therapist came in to work with her and between us we finally got her to do it.  It took a good 30-60 minutes to get her to let us sit her up and sometime in the middle of working with her someone brought a package in for her from her Grandma and Grandpa Kargoll.  She was excited to see the package, so we said she could open it after she sat up.  She didn't like getting into a sitting position and she was very protective of her neck (imagine the crick you would get in your neck if you laid with your head turned in one direction for 4 straight days - OUCH!!).  Once she was sitting though, I felt her actually pull herself further forward a couple of times, so she must have liked being upright again even if getting there was scary.

After we laid her back down, Faith was anxious to open her present.  She loved everything in it, including the wrapping paper which she wanted to keep and started playing with it like it was an alligator mouth that would chomp my hand!  Below is a cute video with the butterfly from Grandma and Grandpa.  I didn't do a very good job catching her laughing and smiling but she was!

Perfect timing for this to show up!!  Thank you Grandma and Grandpa!

Day 4 - Post Op

[Editor's Note: corrected heading from Day 5 to Day 4, lost track of the days!!]

Faith, sleeping after getting both OxyCodone and Tylenol this morning.  You might be able to tell that most of her swelling has gone down and we were lucky that she didn't seem to bruise like we thought she would.  

Today she is supposed to start trying to sit up and walk, maybe go to the playroom if she is able to.  So, hopefully later today I'll be posting a picture of her up and about.  I'm guessing it will be really hard work for her and they may decide to bring in a physical therapist to help get her moving.  We are also going to try and give her a bath today and wash her hair!

Anthony and Faith

Anthony got to visit Faith today. She really wanted to see him (about the only thing or person she wanted today). Today has been a tough day for her, but she is improving. She moved off ICU to a regular floor and is being stepped down on her pain meds. She has been complaining though that her head hurts, above her ear on that side. Not exactly sure why, will have to check with the doc next time they do rounds tomorrow.

Hope to write more tomorrow.

Pre-Op Silliness

This was Faith before surgery being silly with Daddy who she wanted on the bed with her. This might have been after she was given the Versed and she got very relaxed.

Chipmunk Cheeks!

Here she is just after surgery last night (her good side). They thought she would still be out for up to 12 hrs after surgery, but we should have remembered that she burns that stuff off really quick. She was groggily awake more of the night than she was asleep. She wanted one of her BAHAs (hearing aid) around 2am and then she wanted to watch TV around 3am!!

She's been doing pretty well most of the day today, but definitely tired of being here. The docs came by and said she is doing better than expected so she may get out of ICU tomorrow and go to a regular room which is great.

Fred and I have been with her round the clock (taking turns) and my parents were here today too while my sister Sonya stayed at the hotel with Anthony today. He will come visit her tomorrow, maybe for just 15 minutes per ICU rules.

I send another update tomorrow. Thank you all for the kind wishes and prayers, she has a lot of people pulling for her. So special.

The Waiting Begins

It's the morning of the big surgery (Scapula Graft) and we are now in the prep room. Faith will get a physical, and we'll talk to Dr Gordon and then finally she will go back. Hopefully I will get to start her anesthesia again, but it depends on whether the OR has a "ante" room attached, where I can come in, if not this will be her first time going back without me. If that's the case they may give her "Versed" through her G-tube which will calm her and help her forget it.

She got two cute black puppies this week, the little one from us for being brave with her blood draw and the big one from Aunt Sonya! She has named them both Sophie, after my cousin April's puppy. :)

Cotton Candy and Baseball

Could this girl be any happier?!! Children's Hospital gave us tickets to a Reds game tonight. It is a beautiful stadium sitting right on the river. Unfortunately, we forgot to pack jackets and it was a bit too cool and the Reds were losing 7 to 2 so we decided to leave a few innings early. Was a good decision as we were tired from a busy day and Faith should get some decent sleep leading up to Thursday.

Cincinnati Polar Bear!

Check it out!! This was one of the coolest things we saw at the zoo today. Plus the Cheetah show, but I didn't think to video tape it!

No fun!!

First appointment today was to get blood work done. Faith got very worked up just before they took some blood, but I don't think it hurt as much as she was afraid it would.

May You Always Feel Special...

If you listen close, you might hear Faith giggling in the middle of the song! :)

Rise and Shine Video

This song is what they sing every morning to start their day.

Kindergarten Graduation

Wow! Our little girl is growing up so fast! Faith graduated from Kindergarten yesterday. They had a very cute ceremony at the school, sang a bunch of songs and then got their diplomas. As much as we struggle sometimes with sending Faith to a different school than Anthony, I have to say they go above and beyond to make all of the Deaf/Hard of Hearing (DHH) kids feel just like the rest of the kids. There are 3 Kindergarten classes and around 7 or so DHH kids and they have them spread out across the three classes for the morning and then they have all 7 kids in a special DHH class for the afternoon. So, even though there are only 3 DHH kids in Faith's Kindergarten class out of around 25+ kids, all of the kids are taught to sign most of the songs they sing. It was so cute watching them sing and sign all their songs. I will have to upload one of the videos I took.

Here is Faith in the morning before her big day.  She looks so pretty!!  :)

I admit, I got a little teary eyed a couple of times during the ceremony.  They showed a video at the end with tons of still shots of all the kids from many activities throughout the year.  Watching it all go by again in a video was exactly how fast the whole year seemed to fly by.  And seeing the close up pictures of so many little kids with their big eyes and innocent faces made me think about time flying for everyone in that room.  I can just imagine seeing these same kids graduating from 6th grade, becoming teenagers and then graduating from high school.  I hope all of them have amazing lives ahead of them.  They are all on a journey of their own, but it's great that they have shared this part of their journeys together.