Last day to give in 2009

Trisomy 18 is a very special birth defect to me. You see, it gave me so much strength in dealing with Faith's Goldenhar syndrome because we were told she might have Trisomy 18 when we first discovered that something was wrong when I was 32 weeks pregnant. We spent a very difficult weekend waiting on the results of chromosone testing to rule it out, thinking that she could die at birth or within the first year of life. I was so torn up over the possibility that when we discovered she did not have it and that she had something else (they thought it was Treacher Collins at the time) I was thrilled. She would live and I could handle anything else.

Since then, I have been receiving emails from the Trisomy 18 Foundation and I am finally planning to contribute to them today, even though it will only be a very small amount. I thought I would share their information with you in case any of you are interested in supporting them too. Here is the email I received from them today:




Dear Robin,

Today is your last chance to give a 2009 gift that helps create the Miracle of Christmases in the Years Ahead for a family affected by Trisomy 18. Your gift before 2009 comes to a close will help us prepare for all the challenging work we face in the New Year.

All charitable gifts to the Trisomy 18 Foundation continue to benefit our research, advocacy, and family support efforts. Working together, we can ensure families have the support they need and that progress is made in the coming year. Your gift brings hope to families and their children living with Trisomy 18 all year long.

Wishing you a safe holiday, full of hope and possibility for the New Year ahead,

Victoria Miller,
Founder and Executive Director

Donation Link: https://secure2.convio.net/tris/site/Donation2?idb=1971955681&df_id=1500&1500.donation=form1&JServSessionIdr004=jravrrouk4.app1a

Fun Sunday

The kids and I had some fun playing in the snow on Sunday, especially because it was quite warm - maybe upper 60s. We got almost 2 feet of snow from Wednesday to Friday and school was canceled for 3 days! Now the snow is disappearing fast; poor snowman's head was gone when I got home last night!

Happy Halloween!

Faith started out saying she wanted to be a witch for Halloween, but when I took her to get a costume she kept going to the princess costumes so we decided to stick with this pretty Sleeping Beauty dress she got for her birthday last year. I, of course, think she made a beautiful princess, no bias at all!!! ;)

Anthony decided about a month ago that he wanted to be a UPS guy for Halloween and just by coincidence, our UPS guy stopped by a couple weeks ago to bring Anthony this hat! So then I went to The Goodwill store to find a brown shirt and drew the UPS patch and sewed it on for him. He looked so cute and they both had so much fun trick or treating this year! He filled that box almost halfway and loved organizing all the candy when we got home! Faith kept giving her candy to Anthony and signing that it was too big for her, so sweet.

Faith's new big girl bed!

Faith is loving her new toddler bed and her new found freedom with it! Plus at her 3 year old checkup the pediatrician said she doesn't need to wear her pulse of monitor through the night anymore either! Now she is experimenting with sneaking downstairs after we put her to bed to try and watch TV with us and getting up at 6 am!! And we had just started to enjoy Anthony beginning to sleep later! Oh well, it's very exciting to see this new phase!!

For the last 5 years I thought that this crib woud transition to a twin size bed by taking off the drawers at the end which then becomes a nightstand, only to discover in the middle of trying to redo Faith's room that it is 6 inches too short and 6 inches too narrow and the company making the crib went out of business! But it makes a cute toddler bed, so that'll work for now.

Birthday Party Fun

Okay! I finally figured out how to create a slideshow to post on here once again. Frustrating that I completely forgot how I did it the last time, but here it is as promised!

Faith had a wonderful birthday and she is just growing by leaps and bounds. I will post some more pictures this weekend!

Thanks to all of you who have been on this journey with us and all your prayers and well wishes!!

Robin and family

Happy 3rd Birthday Faith!!!

(picture by Megan Reynolds)

Sorry I am SO SLOW at posting these days.  Faith's birthday was a week ago Saturday (September 26th) and it was a blast.  We had some of Fred's family in town, his brother Bob and wife Hilma and his sister Rosie and her daughter Emma which was very nice and then we had THE FUN BUS come for the kiddies.  But you should have heard the adults squealing with excitement when it pulled up in front of our house!!

Coming soon:  a little slideshow of Faith's fun day!

Faith's 1st Day of Pre-School

Happy girl!

Graduation and New Beginnings

FAITH GRADUATES TODDLER GROUP!!

Since Faith is turning three in September she will transition out of her birth to three programs and start getting speech and other services through the school district.  So, she had a little graduation ceremony the week before last, at her Deaf/Hard of Hearing Toddler Group that she has been going to once a week for the last year and a half.  It's so sad to say goodbye to people who have been so involved in her life and helping her learning speech and interacting with other kids with hearing loss like her.  Hopefully we will be able to stay in touch with both her teachers Nancy, Speech Pathologist and Lynn, Deaf Educator, and have Faith come visit them again to see how much progress she makes during her first year of pre-school.

Nancy, Faith and Lynn

Faith's Graduation Certificate, with her name written in sign language!

Recent Zoo Trip with her Toddler Group

with her best friend, Mia

ANTHONY STARTS KINDERGARTEN!!

With one ending there is always a new beginning and the first big one is Anthony starting Kindergarten the same day Faith graduated.  Here are some cute pictures of him at his new school, Faith hanging out with him before school, with his new teacher, Ms. Nugent, and getting in line with his new classmates ready to go into the school. 

Anthony seemed a bit reserved about going to his new school, not sure he wanted to be going 5 days a week, missing some of his favorite TV shows, not having as much time with Daddy and not knowing any of his classmates yet.  It's been a week now and he seems much happier about going.  On Friday he earned a blue clip for good behavior so we treated him to a little trip to Toys R Us where he got to buy a hockey stick.  He was so excited about it and we are looking forward to him trying hard to earn some more blue clips.  

Another new beginning has been my job.  I started on July 13th, and have had to jump right in the deep end to start managing a large project that was starting two weeks late!  It's been a lot of work getting everything set up, the budget, the project plan, identifying the team, learning the goals of the project, training the team on Scrum and getting things moving.  We are now in full swing and development is underway.  We have to be finished by February 28th and then I will either have an opportunity to extend my contract, become an employee (just a possibility mentioned during my contract negotiation but no guarantees) or I'll be looking for another job somewhere else!  So far I really like what the company does and it is very enjoyable helping them make the transition to Scrum.

Hope life is treating you all well.  I'll try to be better about posting more frequently!

Robin

Oceanside Beach

The beach was awesome, we got there Tuesday evening and split our time
between the beach and the pool at the condo. The pool was a good break
from the sand getting too close to Faith's trach which we found a
little nerve-racking! Fred's parents came and joined us for the first
day which was very nice although we wished we had more time with
them. We stayed through Friday morning and drove all day yesterday
and are just pulling into our driveway at home as I hit send on this
post! It was a great vacation, but boy are we glad to be home!!!

Anthony and Fred

Faith playing with her toys!

Visiting Grandma & Grandpa Kargoll

We had a really great visit with G'ma & G'pa Kargoll, especially when
he took us to see the beautiful new firestation #3 where he is a
senior volunteer. The station is georgeous and the kids really
enjoyed checking it out. Unfortunately we just missed the
firefighters who were taking off just when we arrived. We also
enjoyed meeting their friends at the pool.

Anthony teaching Faith how to drive the big rig!

Silly faces!

Grandpa and Anthony on the brush fire truck in their matching
Escondido FD t-shirts!

Loving it!

Faith and Anthony playing in the senior volunteer's van.

Las Vegas and San Diego!

Having a blast on our trip! We left Vegas on Sunday and got into
Escondido, CA around 6pm and had a very nice visit with Grandma and
Grandpa Kargoll. We left their house yesterday around 4pm and drove 26
minutes to Oceanside Beach!! Our condo is beautiful and we got such a
good deal on it; we are very happy! G'ma and G'pa will drive over and
spend the day with us today; should be lots of fun! Hopefully I'll get
a good picture of the kids playing in the water to send!
>

Westward Bound!

Time to take a much needed vacation to destress and get ready to start
my new job! Yep, you read it right, I finally got a job offer and I
accepted! I will be working as a contractor to Policy Studies, a
government contracting company that builds information systems for
state governments, like child support collection systems (did you know
that 65% of child support is collected by garnering wages? I was
surprised, I guess Fred is in the minority that pays of their own
will!). I've been looking for an opportunity to move back into a field
focused on improving people's basic quality of life (rather than the
quality of their entertainment options!) so I'm very hopeful that this
job is a step in that direction.

So we are off for a week of some fun in the sun. Unfortunately Lauren
and Ryan couldn't get away on short notice, but Dana is happy to have
the back seat to herself! We left last night at 8pm and drove to Green
River UT and got a few hours of sleep before hitting the road again
this morning. We are stopping in Vegas for 2 nights to find some good
fireworks and then off to San Diego to see Grandma and Grandpa Kargoll
and go to Oceanside Beach for a few days! We'll drive home on Fri/Sat
have Sunday to recover and then start our new routines on Monday!

Happiness is having a job again! :)

Faith following in Anthony's Footsteps

At Anthony's T-Ball practice yesterday:

Making New Friends...

The Colorado School for the Deaf and Blind in Colorado Springs hosts a family retreat weekend every summer for families with kids with hearing and vision losses.  This year I decided to take Faith and Anthony (Fred stayed home as this was a tough week on him since he QUIT SMOKING!! :)  They had so much fun and made so many new friends that we will definitely go back again next year.  They have all kinds of things for the kids to do and the school staff is there to watch the kids while the parents meet in another building on campus to learn about resources and rights of their children in school.  Faith wasn't quite ready to spend 2-3 hours at a time without me,  but she became somewhat attached to Kristen, one of the teachers who would carry her around and eventually call me to come get her or bring her to me!

Below are some of their new friends.  I especially liked that Anthony and other siblings got to be included in all the fun.  We made special friends with one family, Micah (6) and Victoria (4) and their mom Tracy.  Victoria is taller than her older brother Micah, but she loved being Faith's buddy and Faith loved seeing her when we would go to meals in the cafeteria and in the 4-6 year olds' play room (a big carpeted gym full of toys).  After Faith struggled in the big kids area, I tried putting both Faith and Anthony in the infant-toddler area where she did much better and Anthony did great too!  I heard he was a great helper to all the younger kids, but I think he missed getting to hang out with his other new friends, so I took him back there later.

On Saturday night we got a really special treat and got to meet Margie and Luke Adams, competitors on this year's Amazing Race show.  If you watched the show, you know that Luke is in his mid twenties (turned 25 on Saturday in fact and we got to celebrate his birthday!) and is deaf and his mom Margie was his partner in the race.  They are from Colorado Springs and Luke went to the CO School for the Deaf and Blind for high school.  They were a really great team and made it all the way to the end of the race.  We have watched this show for years and we were definitely pulling for them to win, so it was wonderful to get to meet them and hear them talk about being in the race.  You can see how much Luke just adores his mom!

Faith's favorite teacher, Kristen

Faith's buddy, Victoria

Anthony's many new friends Max, Micah, Anthony and Max's older brother

Playing games in the Cafeteria - Victoria, Micah, Anthony and Max

Best buddies - Micah, Anthony, Victoria, Faith and Max

Luke and Margie Adams from the Amazing Race

Getting our picture with Luke and Margie

Good night!

Robin

Bubbles!

A couple of pictures from last month that I never got around to posting...

Faith blowing her very first bubbles!!

Faith's friend Neela, who lives next door

It was so exciting to see Faith blow her very first bubbles!  She is doing so many new things, it is hard to keep up with sharing the news with everyone!!

Anthony and Dinger

Anthony and the Colorado Rockies mascot Dinger!

Kisses From Faith

Lots of people have been asking me to post new pics of Faith's chin but I haven't gotten around to sitting her down and taking the real "after" photos since her last surgery.  I thought this pic though was a great one for you to see that she does have a noticeable little chin now and she is able to get her lips together for a kiss!!  That is something very new in her life, and I can actually get *almost* dry kisses now instead of open mouthed drooly kisses!

She loves that doll by the way (nice choice Mikki!!).  She has recently really started getting into all her dolls and Anthony has fun playing with her and them too, sometimes nicely and other times just stealing them from her.  Typical sibling games!

A quick update on the job front -- no news is really not good news in this case, but I did have a fairly good week.  I had two interviews with a follow up for one of them on Monday and I have sent my resume off for about 3 other jobs as well.   The competition is very tough right now, but at least there are quite a few project manager type of jobs that I am fairly well qualified for -  I'm really hopeful something will work out soon.

I walked-jogged the BolderBoulder 10K here on Memorial Day which was great to do once again.  I was sore for most of the week afterwards, but trying to get back into walking and jogging so it was a good start!  Hope everyone had a great Memorial Day weekend and is looking forward to a great summer! 

Best to all,

Robin

Summer Fun

Now that school is out we decided to let Anthony put up the tent he
got for Christmas in his room again. When we put it up the last time
it took up almost all the open space in his room, so Fred decided to
take his bed out this time! You can see Anthony and Faith inside
having fun! I'll add some more pics soon, I'm trying out a new way of
posting right from my iPhone so I might post more frequently going
forward.

Anthony's Growing Up Fast!

This was a big week for Anthony, he graduated from pre-school and went to his Kindergarten Orientation at his new school, Cougar Run Elementary!! Graduation was so adorable. I tried to video tape when he got up to say what he wants to be when he grows up (take a guess, anyone who knows him much at all will get it right - a firefighter!) but I fumbled the recorder and apparently had it on standby the entire time I thought I was recording:( Hopefully another parent got his and I can get a hold of it soon. Here's a sweet picture of Anthony and his wonderful pre-school teacher, Miss Sally, and of him with his class as he was giving his speech:

Miss Sally has been at St. Luke's Little School for 10 years and was so good at helping Anthony develop new skills, great self-confidence and great friendships. She really enjoyed Anthony and told us how academically smart he is and she worked with him on his writing skills which are so much better after this past year of school. He really doesn't enjoy coloring much, which is very important for developing the hand strength needed for writing, but he loves writing. He frequently will write the menu for dinner, write letters to people and mail them (even if it's only a sticker in the envelope!!) and ask us how to spell things all the time, so I think he'll do fine.

Last night Anthony and I went to his Kindy Orientation and we were very impressed with the school. His classroom is very big (forgot to ask how many kids will be in the class) and they have so many toys & learning tools, I think Anthony will be so happy there. We also got to check out the computer lab that all the kids in the school share. The room had maybe 30 new MacBook laptops and it looks like the kids each are assigned to one machine so every time they go to the lab they go to the same machine. Here's Anthony checking it out:

Next week Anthony starts T-ball. The teams here are all named after the major league teams, last year he was on the Orioles, but this year he is on the... can you guess? Yep, the YANKEES!! As you can tell from the picture above, Daddy's influence is showing and of course this is Anthony's favorite team, although he truly loves ALL baseball right now. He can list just about every team in the country. He pretends to be Todd Helton from the CO Rockies and he really liked Manny Ramirez (with zero influence on that one) until he got suspended for illegal substance use and many others that I don't even know.

My baby is such a big kid now. Luckily he still lets me hug and kiss and cuddle him!

Faith is doing good this week after a bad cold that made me worry enough to bring her to the ER on Mother's Day; it wasn't pneumonia as I was afraid just a bacterial infection in her trachea which they put her on antibiotics for and has pretty much cleared up. Then we all got sick, probably from being at the hospital (my dumb decision that all of us should go with her instead of Fred & Anthony staying home) - Anthony got it first, then Faith and me, then Dana and finally Fred got it. Anyway, we are all doing better now and keeping our fingers crossed it's out of our house! Faith has an evaluation coming up on June 2nd to see if she qualifies to go to the Deaf/Hard of Hearing pre-school as she is aging out of the birth to 3 program that has been providing all of her in-home speech therapy and sign language instruction. We've been told she will definitely qualify and I was able to visit the school on Monday - it looks very good. She will go to school 4 days a week there plus we are going to put her into Anthony's pre-school 1 day a week, because we love that school and it will be a good measure to see when she is ready to be mainstreamed full-time. I guess she is growing up as fast as Anthony!!

Happy Memorial Day Weekend!!

Robin