Trick or Treat!

Happy Halloween!

Sweet Slumber

We had a liittle slumber party last night, just me and the kids and
Jalapeno - aren't they cute with arms and legs all over each other?! :)

Faith's 1st Day of 4-year old Pre-School

Such a happy girl!!

Jumping right in to the first lesson!

Anthony's 1st Day of First Grade

Meeting his new teacher, Mrs. Battagline (Mrs. B for short)

Anthony sitting and waiting in his new desk to find out where to put
all the school supplies we had to bring on his first day.

Summer Fun

Anthony and Faith loved the kiddie coaster at Elitch Gardens this
weekend. We had a fun filled weekend to enjoy the end of summer
vacation as school starts for both of them this week!

She Can Write her Name!!

More pics from our weekend retreat. Faith has been writing Fs and Hs for awhile and tracing her name over her teachers penciling, but this is the first time she wrote her whole name without any help or prompting!!! :)

Faith making a smoothie

What I Learned This Weekend

Just got home from the Colorado Schoool for the Deaf and the Blind this afternoon. I love this yearly family retreat. I get so many things out of going. First, my kids get to be around other kids with various disabilities which helps Faith know there are other kids out there like her. It also helps Anthony know that there are other families like ours with one sibling who is deaf or blind or has another disability. Anthony's teachers already tell us frequently how empathetic and helpful he is with his classmates and this atmosphere lets him be himself and enjoy other children just like his sister and make new friends of his own too. Dana also went this year and knocked out 16 hours of volunteering towards her high school requirements. She stayed with the 4-6 yr old kids most of the time and I think she enjoyed being there. She is taking American Sign Language (ASL) as her foreign language, so it is great for her in that way too!!

For both Faith and me, I think it is a great opportunity for us to see older role models, people who are deaf and signing a lot. It's good for Faith to see so much signing because it reinforces her own use of it. I think it is too easy at home for us to not bother signing because we know she hears us; but she needs to see signing as normal communication because she needs to sign to us for us to understand her more thoroughly. And it's good for me to see adults signing so that I can practice it myself and so that I too can see it as just a regular part of our lives.

I also got to meet two mom's with kids just a little older than Faith who have been dealing with feeding issues which is becoming my biggest focus now for Faith. One of their kids has become a good oral eater with some feeding tube supplements and the other is going through a longer road of learning to eat and went to the feeding clinic here that I want to know more about. One of the two little girls also wears a Baha like Faith, but has a different syndrome, CHARGE syndrome, which I have heard of before but don't know very much about. They live within a half hour of us and we exchanged info so we can get together soon to learn more from each other and let our kids play together. It was really cool to see how excited her little girl (6 yrs old) got when she found out Faith also wears Bahas. It's a really big deal for them!

The biggest thing I got out of the conference though was meeting two young men in their early 20s who grew up deaf/hard of hearing and after many years of other support with their eductation, ended up going to the CO School for the Deaf and Blind (CSDB). The school is a residential school with dorms for their students. They both started going to school there around 6th grade and both played football and one of them even went on to play football with the University of Wyoming and went all the way to winning a National Championship in 2004. Both of their lives were fascinating and heartwarming to hear about. But, beyond that, it has opened my eyes around a decision Fred and I will need to make at the end of next year. Faith will finish preschool next spring and we were hoping she will be ready to start kindergarten at the same school as Anthony. Even though the school she is going to pre-school at is where the Deaf Hard of Hearing program for our county is located, I have really been hoping she won't need to stay there for K-6, simply because I want her at the same school as Anthony. I have been toying with the thought of moving him to that school, but it feels like a mean thing to do because he has already gone to 4 different school settings -- 3 different pre-schools plus the elementary school where he just finished Kindergarten. If his first pre-school hadn't closed we would have stayed there for the whole 3 years (he started going 1 day a week when he was 2.5 yrs old). Anyway, it just plain stinks to have to figure out how to make everything work well for everyone. But being at the retreat this weekend helped me see just how big a deal it is to these students to be around their peers that make them feel more confident and more comfortable with their differences. If Faith is really speaking clear enough to be understood by most people by next summer, it will be very tempting to move her to our home school and get a little less support/therapy in trade for more time with her brother and hopefully a stronger relationship (if that is even possible!), not to mention it simply being easier for us to deal with one school instead of two.

In the end what I learned this weekend just makes our decision that much harder, but I feel like I understand more from what might be Faith's perspective as she gets old enough to have an opinion. I want to do what is best for her, until she feels ready to make those decisions herself.

Finally about the conference, we also go to hear about a lot of assistive technology for people with hearing losses from special phones to alarm clocks, doorbells, smoke detectors, headphone equipment, etc. That was very useful for me too! We said our goodbyes around noon and then hit the road getting home just around 2pm. Fred arrived home from his trip to Vegas just about an hour or so after us. He is looking very tan now and had a great time with his old buddies from NY. I'm really glad he gets to take this trip every year and get some nice downtime from watching the kids and doing everything around the house. Even so, next year I hope the dates don't overlap so that he can come experience the family retreat for himself! :P

Well, it's late and I need some real sleep in my own bed tonight!

Family Retreat

We are down in CO Springs this weekend for our second annual participation in a family retreat weekend for families with hearing or vision loss. Dana came with us this weekend to volunteer too - she will be able to get 13-15 of the 20 hours they are required to do to graduate high school. (hmm, doesn't requiring someone to volunteer contradict the whole idea?!)

Faith and Anthony are having a blast again which is why I really love coming! I will post more pics later!

Anthony Graduates from Kindergarten!

Yep! Anthony graduated from Kindergarten on Monday and I felt so sad! The year just flew by and I know the years ahead will just keep going faster. I'm hoping next year I will be able to get a litte more involved.

Anthony and Ms. Nugent:

Remember this sign from the beginning of the school year?!

Faith enjoying a messy chocolate chip cookie!!

Rockies beat the Nationals!

Faith got to go to her first baseball game on Sunday. It was a
beautiful sunny day and we got some great seats 15 rows behinds the
Rockies dugout! The kids had a great time, Anthony got his second
practice ball from a game and got to call Uncle Keenan during the game
to give him some grief over his Nats after Keenan had told Anthony the
Nats were going to rock the Rockies! Not this time! The Rockies won 2
to 1!

Caught Napping!

Faith is doing great, no real news to report! Here she is comfortably asleep on our bed! She was watching TV but had missed her nap and it caught up with her!

A little good news...

My last day of work was last Friday and I've been worrying about how long it will take to find a new job. I've had interviews with 4 companies already and have a few more things in the pre-interview stage, but no offers yet. Except that I just got a call from the contracting agency that I did my last job with and it looks like the company I was at has a 3-4 week job for me to come back for. Perfect! I can keep job hunting while I have income for a bit longer.

Last week was really interesting at that company; I mentioned once in an earlier post that my boss there had made me wonder whether I would have a job from one day to the next, even though I was leading one of the most successful projects they've ever had there. But just a week before my contracted ended was her last day -- she moved on to another company! So all last week, people kept coming up to me asking why are you leaving instead of being put on another project? All I could say was that she and I had very different management styles and I wasn't a good fit with her. She expects project managers to control every aspect of a project while I believe in leading a team to own the project themselves and their success too. She told me near the end of my project that she had never seen the kind of high performing team I was managing, but it seemed that she thought I had gotten very lucky. I didn't say much about it, but I thought it was rather ridiculous when that was what I had told her my strength was (building high performing teams) before she ever hired me to begin with! :)

Luckily, other people in the company think I at least deserved another chance to prove myself some more, and now I've got it. So, thanks for all the prayers and good thoughts! Keep them coming so we can still have an income a month from now!

Love,
Robin

p.s. Faith got her school pictures back today. I love how she has her hands on her hips! And if you've never seen that purple thing on her trach before, it's her Passy-Muir Valve (PMV) or a speaking valve. It's a one-way valve that allows her to breathe air in through her trach, but not exhale through it; instead her exhalations are forced up through her mouth, passing her vocal cords which allows her to speak louder and with more control. I really need to upload another video of her speaking. Her speech has improved dramatically over the last year and even just in the last month it has leaped again!

Faith doing well

Faith seems to have recovered from RSV, no more oxygen during the
days. We went out for lunch today and Faith wanted to cozy up with
Daddy - she has really grown very close to him over the last year!

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