Faith with Oxygen in tow

Faith is pretty much back to her usual activities, with her oxygen
tubing following her around. Double click on picture for a close-up.

Putting things into Perspective

I've been whining a lot in my last few posts because we've all been sick and I'm really tired of things being difficult for us. But, today I was reading one of my favorite blogs, "Life Since Harlie" (Harlie and Faith were born a day apart, both with Goldenhar Syndrome), and I gained some much needed perspective. Harile went through a major jaw surgery about 9-10 weeks ago, where they took bone from her skull to graft into her jaw and had her jaw wired shut for 9 weeks while it was healing. She went in to get the wires removed this past week and it turned into a serious life and death emergency. Thankfully she got through it, but she went into cardiac arrest during her surgery. My heart ached so much just reading her mom's posting. Harlie has an infection in her bone and will go home on IV antibiotics for 6 weeks. And I'm whining about Faith going home on oxygen for maybe a week or so and doing nebulizer treatments twice a day? Yes, that is more than most people have to deal with, but as always, it could be even harder and I need to focus on getting through this instead of focusing on life being hard.

Faith is pretty much back to her normal, happy, self, just with oxygen tubing following her around everywhere. I'm hoping we can start weening her down a bit over the next few days as she seems to be very stable now. The hardest part right now is that the antibiotic she is on is giving her very bad diarhea and she screams bloody murder when I change her diaper. I feel just awful making her cry like that but obviously I can't just not do it.

Here's hoping things are a little better next week and special Valentine's Day wishes of love being sent to Harlie. Get better soon!!

Robin

Having fun

Despite getting very sick with a serious repiratory virus, Faith recovered pretty quickly from being very out of it and making this "enh" shound every few minutes to complain about how she felt to starting to smile and play with the toys the the fun specialist (i forgot her real title, but that is the basic job description!) brought her. Here she is giving a "My Little Pony" a nice bath. She loved being able to play with some water.

We left the hospital a few hours later and she has been doing very well since then. I'll try to get a few new pictures of her up soon, running around with her oxygen tubing following her all around.

Robin

Enough Already

It looks like 2010 wanted us to know right up front that it has no intentions of being any better than 2009! My car had to go in the shop (3 times for one repair), our hot water heater busted and had to be replaced (and then repaired within the first week) and finally (please be final, we just can't take any more) Faith landed in the hospital with RSV for four days. She is doing much better today but will still need to go home on oxygen for awhile (a week or two, I'm guessing).

Oh, and my job ends next Friday and I don't have anything new lined up! I have about 3 or 4 possible jobs pending, but I need an offer!

So, seriously, enough already!!

Faith's room at the hospital PSL - they built a new wing since we were here last, so the rooms are much nicer and I even had a couch to sleep on and a desk to work at!

All for now, I'm too tired to write more.
Robin

State of our life and goodbye to 2009!

President Obama delivered the State of the Union address tonight, so I thought I would write about the state of our life!

To be honest, 2009 was a tough year for us as I'm sure it was for many others. January started out with me being laid off from work. Valentine's Day in February was celebrated by us leaving for Cincinnati the next day for a 6 week stay for Faith's first jaw distraction which required her to go under general anesthesia 5 times for surgeries to break her jaw and tweak the metal hardware in her mouth. She was an amazing trooper and the month of hell I was warned about ended up being more good than bad - we enjoyed some really good visits with family members, made new friends and even have good memories of our little apartment we rented. It was tough though being split up from Fred and Anthony for 4 weeks in the middle of that trip.

Once we had her jaw distractors removed in April, it was time for me to get serious about finding a new job. I interviewed with more than 10 companies and ended up on unemployment for about 5 weeks before I finally landed a 6-8 month contract job in July. I was excited about the company, but my new boss kept me worrying whether I would even have a job the next day!

In August I accidentally buried our insurance payment in a pile of papers causing us to lose our insurance from my old job (under Cobra). So I spent weeks in September learning way more than I have ever known about health insurance plans and feeling very mad at myself for losing something so important to us! Faith was still covered by Medicaid the whole time, but it was disappointing to find out private insurance would automatically disqualify her due to her significant "pre-existing" medical issues. I'm so grateful she qualifies for Medicaid due to her trach. I'm not sure what will happen in the future when she (hopefully) gets it out, but still needs significant surgeries. We ended up being able to get new coverage from my new employer thankfully, and I learned a lot about High Deductible Health Plans and Health Savings Accounts - very relevant to the national debate on health care reform going on.

Just before the year ended we had a few more challenges, car problems and our water main pipe busting beneath our driveway requiring the driveway to be dug up so the pipe could be fixed. And just to finish the year off with a bang, I earned myself 2 speeding tickets driving to and from work on the low traffic days when most people were on vacation and I was enjoying being able to get to work much faster!!

So we aren't sad to see a new year begin! But, in fairness to 2009, we did enjoy some nice things that I can't ignore...

As I mentioned above, while we were in Cincinnati, Faith and I got to see my sister Terry, Fred's parents, my parents, my Aunt Peggy and Uncle Steve, my Aunt Linda and cousins April and Lori, so that was truly special. We also got to meet a friend from the Jaw Distraction Yahoo Group - Abby and her mom Jen, Faith loved playing with Abby and talked about her for months afterwards!

In July, just after I got my job offer, we took off for a spontaneous vacation to Las Vegas and San Diego and got to see Fred's parents again and enjoy some time at the beach, what a treat!! And in November, Fred got to go to his 30th High School reunion and reconnect with a bunch of old friends. He really had a good time and has stayed in touch with many of them on Facebook.

It was also exciting to see Anthony start Kindergarten and Faith start pre-school they are both very happy in their schools and making new friends. (But we do miss seeing Faith's speech therapist, Kim and her DHH Toddler groups friends and teachers very much!)

Finally, it's been over a year now since we made the decision to give up the in home nursing care, and although we miss our favorite nurses quite a bit, it was a really good decision and Faith and Daddy have grown so much closer! We also enjoyed some major medical milestones for Faith - she started wearing her BAHA hearing aids on the implanted posts giving her much greater hearing and we got to quit using her pulse oximter at night (so no more wires connected to her at night!).

Before Faith's jaw distraction, my mind consumed every free moment I had with thoughts about when we would do it, with what doctor, how, what would be best for her, and on and on. After her surgery, I completely stopped being absorbed by it. That was a huge milestone! Some of it is starting to churn again, more about how to teach her to swallow if it's even possible yet, but that's pretty minor in comparison.

Happy 2010 to everyone!! I hope this year brings much happiness and new prosperity to all those who have been feeling challenged by these economic times or dealing with other difficult challenges! In particular, I want to wish a wonderful year to the Cooper Family and Baby Chloe, a beautiful little girl who was born on Fred's birthday, April 20 (2009) with a similar syndrome to Faith and finally got to go home in November, after 6 months in the NICU. We met their whole family in August and saw them again after they got home in November. They are an inspiration to us and we hope meeting Faith helped them on their journey as well. We are also going to greatly miss our good friends, Dennis and Keshena Vanek who are moving to Seattle due to the job market. We hope you enjoy the new job and make tons of new friends!!

Hope you enjoyed the long post, I know I am letting too much time go by between posts, but in many ways that is a good thing because it means our lives have gotten pretty typical lately and I don't feel like I have much to say on any given day!

Love,

Robin

First Sleepover

My best friend Ashley offered to have Anthony spend the night tonight, and I brought Faith with me to drop him off. We started hanging out, Ashley, Leah (one of Ashley's high school friends) and soon I got talked into all of us spending the night. Faith is having so much fun playing with Jadyn, Ashley's youngest.

I'll post some more pics soon!

Robin