Happy Halloween from Catarina and Referee!!

Happy Birthday Dear Faith!!

Fashion Girl

Faith loves going shopping so she can try on all the accessories!

Can't Hold Her Back!

Our amazing monkey girl!! This shows she's having no trouble fully extending her left arm after her surgery.

Breaking the Rules!!

Faith couldn't wait to get back on her scooter even though she shouldn't be wearing a helmet yet as the strap has to go right across her new bone in her jaw. Hard to say no to a girl who has always been very active!!

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.

Jaw Surgery Dates Confirmed and Plans Underway

Faith's jaw surgery is scheduled for Thursday, June 7th, starting early in the morning.  We are flying out on June 4th into Indiannapolis and then driving to Cincinnati that evening.  We have a room reserved at the Homestead Suites and have submitted our application to the Ronald McDonald House (RMH) next door to the hospital, now we just need to reserve a rental car.  We wont know if we can stay at the Ronad McDonald House until 24 hours before Faith's first appointment, when they will put us on their wait list and then it's just a matter of how many other families are there, for how long and how many other families are on the waiting list ahead of us.   The Homestead Suites is a nice alternative for a bit more money, but it is 20 minutes away from the hospital and it would just be easier to go back and forth more frequently if we were next door.  I will try to post pretty frequently during the whole trip including some fun things we will try to get in ahead of time, like the zoo, aquarium and maybe a Cincinnati Reds game, as well as some before, during and after pictures.

Friday the hospital called to tell us Faith needs to come in for a blood draw before the surgery so that they can type her blood and have it on hand during the surgery.  I didn't like hearing that she could lose enough blood during the surgery that she would need a transfusion.  Ugh.  Faith wasn't happy to hear about it either.  In fact, she hasn't ever had to give blood for tests since she was a baby or under anesthesia, so I'm afraid this will be really hard for her.

We also found out a couple days ago that another little girl from Colorado (Chloe) will be having the same exact surgery the day after Faith with Dr. Gordon as well.  We have met them a couple of times, but haven't spent much time together as they live about 1.5 hours north of us in Fort Collins.  I'm guessing we will end up seeing them a lot more in the hospital!

I'm starting my new job this week - heading to Philadelphia in the morning and coming home on Thursday night.  Anthony finishes 2nd grade on Wednesday this week and then Faith graduates from Kindergarten next Thursday, May 31st.  Hopefully Fred will get a couple good pictures of Anthony's end of the year party while I'm gone.  It's a bummer to have to be out of town for his last week of school, but at least it's not a year when he's having a graduattion and thankfully I will be home for Faith's.

New pictures to come soon!
Robin

Moving Ahead with the Jaw Surgery

Well, here we go.  We have decided to go ahead with Faith's jaw surgery scheduled for June 7th.  I told my new boss about it to see whether it would be okay or if it might be better if I postponed it, and his response was to keep it as planned, everything else could wait.  Nice response; I think I found yet another great person to work for!  Really, over all my years of working, I have had some really great bosses who were good at both inspring hard work and being very human.  I'm very grateful.

We went ahead today and bought our airline tickets, on Southwest of course!  We will be arriving on Monday, June 4th, into Indianapolis at 6:45pm and will then drive to our hotel in Cincinnati, about a 2-2.5 hour drive, so it will be pretty late by the time we get settled in.  Fred and I thought it would be good to be there a couple days early so that we could do a few fun things with Faith before her big surgery on Thursday.

We have started preparing Faith for the surgery, talking about the details a little bit, that they will be taking bone from her back to put into her jaw.  So far her questions have been, will they give her the sleepy gas and will the bone in her shoulder grow back.  Those are some pretty good questions!  I also told her they may need to wire her mouth shut to which she responded by feeling how her teeth have a big gap in front and saying she would still be able to get a straw in there, which may or may not be true, since her lower jaw will probably be moved forward a lot.

I was having such a hard time dealing with this surgery being much more involved than a regular jaw distraction, but after talking with lots of people and especially just spending a lot of time talking with Fred about it, we just feel like this is the best thing to do right now.  We realize it's going to be pretty hectic around here with me starting a new job just 2 weeks before this surgery, but in a way that is good, because the job wont have become crazy yet.

Just wanted to let everyone know we are going ahead.  I plan to be posting regularly on the blog while we are there, and we really enjoy everyone's support and comments. 

More soon,
Robin

Quick Update on the Job Front (I HAVE ONE!!)

Just wanted to send out a quick update to let you all know that I was offered a really great contract job today with Comcast as an Operations Manager/Technical PM for their latest IPTV (Internet Protocol TV) product which they are hoping to start deploying this year.

This is a great job for me as it combines my technical skills in the cable industry as well as my software development management skills (as a ScrumMaster in case you've heard me talk about that before!), plus the job is 2 miles from our house, plus it's a great hourly rate, plus there's a good chance it could transition into an employee position in the future.  I'm thinking it will be a contract position up to a year, but I'll just have to wait and see how that plays out.

So, thank you all for the prayers and good thoughts!!  This week has been a crazy week with so much job activity that I felt pretty sure something would happen soon, but I was very surprised by how fast this happened!  I also ended up getting a verbal offer from the company in Boulder that I had been through 3 rounds of interviewing, but their offer was significantly lower than what I was making in my last job and what this new contract opportunity will pay.  So, that in combination with the fact that we would really have to look into moving to Boulder (its almost 100 miles round trip from our house to that office), it wasn't a tough decision.

I'm supposed to start a week from Monday, May 14th, so now I get to take a week to just relax, destress and maybe get some of my house projects done!  I've also mentioned Faith's surgery to the hiring manager in an email to see whether it will be okay for me to take two weeks off so soon, or if it would be best to try to reschedule the surgery.  I need to be flexible and I think we can manage to postpone Faith's surgery to either later this summer or even longer if we need to.

Best to everyone,
Robin

She did it!!!

Can you believe it? Faith learned to ride her bike without training wheels in one day!! I'm shocked! Now Anthony really needs to learn, but he just doesn't like to ride his bike that much! Oh well.

End of Training Wheels!!

Faith asked us to take her training wheels off her bike today and wasted no time getting the hang of it!

Anthony promoted to Bear Cub!

Last night Anthony's Den of Wolf Cubs were promoted to Bear Cubs! He's been having some good fun in his first year of cub scouts this past year. I think his favorite things have been making his own Pinewood Derby car and racing it, and making dinner (grilled hot dogs, steamed broccoli on the grill, potato chips and drinks) mostly all by himself for the family last week! That was probably his toughest requirement to complete to be promoted.
Of course Faith enjoyed being included in all the fun last night too!

What keeps me up at night...

A few jobs ago, I worked with someone who liked to ask that question.  He wanted to know what kept his bosses/customers up at night because that would tell him what the highest priorities were for us to focus on.  I've thought about that question often and I thought I wasn't very committed to my work at times because almost nothing at work would keep me up at night (except for a few times when I had so much to do that the to do list I kept in my brain would go into overdrive until I would get up and write it down so I could stop thinking about it!).  Really the early challenges with Faith and her surgeries over the years have been more than enough for me to have to think about at night, I don't need to be worrying about work; especially considering I work in the cable television industry - getting better TV to the masses just isn't something to lose a lot of sleep over!!!

But tonight I am wide-awake.  Can't sleep even after going to bed a couple hours ago.  My latest job ends tomorrow.  In the past 11 years I have had 6 different jobs and I have been laid off three times due to companies scaling back on projects I worked on, or basically going under (the case of my current layoff) one job change in all of those was truly my own choice where I left for a better job that was also closer to home; another due to a contract being completed and another due to not being paid regularly (and I was the lucky one for leaving when I did, the others who stayed lost 3 months of pay at the end of last year).  I am tired of having to find a new job so often.  It takes time and it's depressing when you think you have a bunch of opportunities and then they evaporate right in front of you.

At the moment, I have almost all my hopes on one possibility, I have been through 3 interviews phases and I know it's between me and some other guy.  They interviewed 8 or more people for the position, so it's nice that I've made it to the final two, but, unless I get the offer, it really doesn't matter that I made it to the final 2!

I have a few other leads right now, but they are far from solid possibilities.  So, after tomorrow I am down to 6 weeks of severance and after seeing the last 60 days (since we were notified of the company shutting down) fly by, I'm feeling much more stressed that 6 weeks will fly by in another heartbeat. 

And of course on top of trying to find a new job, we are also trying to plan Faith's next jaw surgery.  I haven't written about it lately because, in all honesty, ever since Dr. Gordon told us he thought we should do the scapula graft surgery instead of a jaw distraction, I've been having a hard time accepting it.  Right now it is scheduled to happen on June 7th and she would be in the hospital for about a week afterwards, but I'll be honest, I could see us canceling it and deciding not to do anything this summer.  Especially if I don't have a new job yet.  I just don't think we can afford the trip without having a new source of income by then.

Sorry for my long rant, just needed to get all this stress out of my head tonight and thought it would be good to write about it.  Hopefully I will have some good news to report by the end of the week.  And then I will write some more about the scapula graft surgery.

Thanks for listening,
Robin

2nd Jaw Surgery -- Plans Keep Changing!!

We were planning to do Faith's next jaw distraction this summer and I actually scheduled it for June 6th, but later that same day I found out my company is shutting down over half of the company and I will be laid off on April 23rd.  We are still waiting to find out how much severance we will get after that, which hopefully will be at least a month or more.  I am fortunate to have a nice amount of notice and I am in a good field where there are open jobs.  Just wish me luck or say a prayer that I'm able to land a new job in a few months before the money from this job runs out!

So, just like the last time I got laid off in 2009, we have decided to move Faith's surgery up to as soon as possible, which they just confirmed this morning will be on March 29th.  That is, it was going to be on March 29th until a few minutes ago.  I just got off the phone with Dr. Gordon who just received Faith's CT scan that we had done last week in prep for the surgery and he doesn't like what he sees from her first distraction.  Basically it worked on her better side, but he isn't happy with how her bad side looks and is more doubtful about the success of doing another distraction.

Just last month Fred and I had a conference call with Dr. Gordon to discuss all the options he gave us and get his input on what he thought was the best approach.  At the time, without seeing her CT scans, he felt the internal distraction is best for cases like hers that are very asymmetric between the left and right sides.  But now that he has seen the scans, he feels that a distraction just isn't going to do enough and he is leaning towards doing the scapula (shoulder blade) graft.  This would be so different from what we were expecting to do.  It would be a much longer surgery (6-12 hours) and she would stay in the hospital for about a week afterwards and then we would go home.  He said we may still need another distraction after that heals (minimum 3 months but we could wait a year or more if we want/need to) to still get the growth needed to get her trach out, although he said his colleague who has been doing these longer has had some patients not need another surgery until they were in their late teens.

It's an awful lot to think about right now and I'm not sure what we are going to do yet.  Dr. Gordon offered to do a video conference with us so he could show us what he is talking about on her CT scan.  I'll try to post an update following that, whenever that will be.

More to come...
Robin