Thursday, December 30, 2010

Lots About Kaitlyn...and A Couple Christmas Pictures


So I haven’t done a real post in awhile. Things have been quite crazy but normal around here. There really hasn’t been that much to write about. We are enjoying every lazy second of Christmas break. We get two weeks without school and a two week therapy break for Kaitlyn and me. I LOVE all four of our therapist but therapy gets to be a lot, day after day, week after week. I’ve had pull-my-hair-out moments with the older boys and wish school would start soon, but they are short lived. We’ve been having many family game nights, sledding excursions (only one resulted in an ER visit, Brady’s fine), and great visits with family and friends. It’s been wonderful.

FYI: Never let your children sled down a large hill with a tree at the bottom, regardless of how small and off to the side that one tree is, regardless of how popular that hill is in your community, your child can still crash right into that tree at a very high speed and give you the most terrifying, five minutes of your life and land them in the ER on Christmas Eve. Don’t reason with “What are the chances,” in your head, even though it is extremely unlikely to happen. It does happen! Brady is fine (lots of bruising, he thought the x-ray was really cool).

Back to the update on Kaitlyn:

At 16 months old she weighs in at 21 lbs, she is in size 3 diapers (the same size as her 5 months old brother, they been in the same size for 2 months now).

Her strengths…

Definitely gross motor! She has been almost walking for a month now. She takes 6-8 steps at a time consistently. We go next week to get her fitted for Sure Steps, ankle/foot orthotics. We are crossing our fingers that our insurance company cooperates, apparently Sure Steps aren’t official AFO’s and this could cause a problem. She has great stability (for having that extra chromosome) but I’m convinced these will help her to the next step with her walking. That low tone seems to interfere often. Many of you might remember that we were given a treadmill to assist Kaitlyn to get her walking sooner. In complete honesty we have used it very little. Walking has been such a natural progression for Kaitlyn, she would much rather push around one of her many walkers. Now speech and communication we could use some more help…

Her weakness is definitely communication.

Verbal, non-verbal, signing, you name it, she’s quiet and stubborn. It took her awhile but she is making sounds, ma, ba, da, and la. She signed open for about a week, and I think she signed all done once. Our biggest goal right now is to teach her the importance of communication, how it works, and why it’s worth doing. I am so excited for the day we can imitate sounds back and forth, there will be tears of joy! Recently it was decided that we will start using PECS with her. We will have pictures and she will overtime hopefully begin to look and eventually point to what she wants/feels etc. In the mean time we will continue to work on signing and sounds with her. I know she has so many thoughts in that pretty little head of hers, I dream of the day that we can communicate more with each other.

Her ears…


We’ve been watching the fluid in Kaitlyn’s ears for some time now. Since it hasn’t cleared we have been referred to a Pediatric ENT to get tubes put in. Hopefully this will remove the muffling she most likely hears and improve her speech!


Constipation…


My poor little munchkin, she struggles going potty. Once again her low muscle tone comes into play and makes her intestinal track sluggish. After trying the normal remedies, prunes, prune juice, adding fiber, and cutting out the iron in her multivitamin, we finally found a doctor willing to get down to business. Kaitlyn takes 3 teaspoons of Miralax a day to keep her stools soft and regular. She can finally have a BM without screaming and her buns are beginning to heal. The Miralax was added in 1 teaspoon increments every 3 days until we found a dose that worked. The doctor said she might always need Miralax. Poor baby!

Other than all of that things are fine. She continues to make progress in all areas. She receives OT and our primary focus is getting her to use her thumb. She has amazing raking skills and sees no need to use the pincer grasp. Little stinker! She is kicking butt in gross motor, we are taking our PT time and actually focusing more on fine motor (OT). She also has a Developmental teacher. She is learning great. I constantly have to remind myself that we have to teach Kaitlyn how to do everything. Things just don’t occur to her. But once we take the time to teach her she catches on in no time!!! Her accomplishments are no small feat! She is also receiving nutritional/feeding therapy. She eats great. With only ½ of one tooth we are constantly looking for new foods to feed her, she wants texture but can’t chew much. The ONLY food she has refused to date is fruit loops; it was suggested to give her fruit loops to help her with her thumb, but no such luck. She rakes it in and spits it out, LOL. She still won’t drink from a cup or straw. We’ve made small progress and continue to work with a wide variety of cups. Her feeding therapy sessions are mostly spent working on oral motor, strengthening her mouth muscles to help with feeding, speech, and tongue protrusion. Slow but sure she continues to make progress in all areas!
Kaitlyn is a soul we can all learn from. She brings so much too so many people. It is important that we take the time to understand all she brings to our lives. God has great plans for our special little girl.
May 2011 bring all of us health and happiness. This New Year I will be making time to enjoy the small things and learn from my children!


Cheers!


Tuesday, December 21, 2010

Tuesday, December 7, 2010

Pretty Piggies

Kaitlyn's first pedicure!
It was difficult painting a moving target but oh was it fun!




Wednesday, November 17, 2010

How we measure a year....

In blue eyes...

and drooling contests

in special moments when Grandma and Kaitlyn get to see each other for the first time since they have both become survivors!

in victory scars

in friends
(Lily and Katie last December)
and the girls again at this years Buddy Walk

in smiles

in special moments with Great Grandma

in more smiles
(oh I love this beautiful girl)

and holiday's

and vacations

in LOVE

and kitty cats

in birthday's

and rubber ducks

and butterfly princesses


and most of all successful heart surgeries, and a healthy, spunky little 15 month old who continues to amaze me with her determination and unconditional love!
The last year has been amazing. One year ago today little Kaitlyn at only 14 weeks old underwent open heart surgery to repair a congenital heart defect (Complete AVSD). It was the hardest day of our lives. I am so thankful for the steady hands of her surgeon and all the amazing people that were put in our path during our stay down there.
God is good!
As I reflect back my emotions surprise me. I think I have shed more tears in the last two weeks then I did last year. I watch the video and can not believe that was our life...
Kaitlyn is my heart, my hero!
If you can't see the video click here.


Tuesday, November 16, 2010

Finally...

......a picture update!
My 15 month old beauty Halloween weekend! What a difference a year makes!

I'm probably the last blogger on the planet to post Halloween pictures, but my life is CRAZY!
Ty is finally sleeping at night and I must confess I've been choosing sleep over computer time! Back in mid October I got really sick with strep throat which abruptly ended my 31 for 21 challenge. I honestly had great intentions and applaud everyone who achieved it!

The four munchkins...the Vampire, Kitty, Biker, and Puppy!
Love this picture!


Pretty Kitty

Creepy!

Aunt Jenna and her favorite baby girl!

Our handsome biker dude!

And the super cuddly puppy!

Awwwww!

At least one of them would touch the inside of a pumpkin this year! Progress!

The babes and I at Bryce's class party. It was a lot of work even with Daddy there!

Brady the Vampire at his school party!

I loved her outfit that day! Girls are so FUN!

Well tomorrows' a big day.
November 17th is the one year anniversary of Katie's heart surgery!
And my big boy turns 6!
I am so thankful we will be out celebrating his birthday tomorrow as a family and not in a hospital!
Look for Kaitlyn's heart video tomorrow!

Thursday, November 11, 2010

I'm So Thankful...

I am so in love Ty. I cannot believe he is 3 months old already! Tomorrow he will be 3 months 13 days old. Tomorrow he will be the exact age Kaitlyn was one year ago when we sent her into heart surgery. Kaitlyn's heart surgery is behind us and in all honesty it really isn't something I had been thinking of often. But these past weeks I have been constantly reminded of last Fall. This year everyone is healthy, everything is normal, we enjoyed Halloween, school parties, playing in the leaves and soon we will all be home together for Thanksgiving! This year we were able to celebrate Brady's 6th birthday and enjoyed every minute.
Last year at this time H1N1 tore through our house. The fear of Kaitlyn getting sick when she was so "heart"sick already was absolutely terrifying. Last year Kaitlyn and I stayed home on Halloween. She was so sick. I missed Bryce's family Fall party because I was at the hospital with Kaitlyn getting chest X-rays. We were given a surgery date only 1 1/2 weeks before hand. The date for surgery would be November 17. Brady's 5th birthday. We quickly through together a party for him. Kaitlyn went to her Grandma's to avoid germs and a few days later we were at the University of Michigan, we missed Brady's actual birthday. For the first time ever our 2 boys were without us and our baby was fighting for her life. Not to mention my Mom was diagnosed with aggressive cancer that same week.
(Sigh) I can't believe that was my life. Things are GREAT right now. So this Thanksgiving I am the most thankful for the health of my family. Kaitlyn had an amazing heart repair and my Mom is in remission.
Thank God!
Below are pictures of the youngest Ross.
Happy 3 Months Big Boy!!!








Tuesday, November 2, 2010

Laughing Out Loud....

Take a peak at the video below. It isn't about Kaitlyn or Down syndrome. It is a hilarious video of my best friends husband. They are such an awesome couple! They are two of the most amazing, generous, God loving people on the planet. And Lucas is hysterical. They have a busy life, two beautiful girls, and are very active with the youth ministry within their church. I think we could all learn something from them, from Lucas. Despite their hectic life he finds time to have fun!

The Smith Family
To show you what a fun couple they are here was their Halloween costumes this year!
Little Red & The Big Bad Wolf

Enjoy!

(you have to pause my music at the bottom before pushing play)








The video was made for their youth program at church!