Kaitlyn's Korner

Thanks & GIVING for Gabriel and his family!

2011-11-21T22:27:00.001-05:00

One of my dear local friends and fellow blogger needs our help! Erin, from Gabriel Updates, and her family are in need of some support. In a few weeks Gabriel their 3 year old will be in an Intensive Feeding Program to teach him to eat and enjoy food. They have been waiting for a very long time to get into this great program and are thrilled that Gabriel will be getting the help that he needs. The problem is that Erin will be missing 8 weeks of work while Gabriel attends long hours each day at therapy. So to ease the financial stress a few of us have started a fund for the family to help out with bills, their mortgage, Isabella's childcare, and any other expenses that arise during this time. I am asking for your help. Please make a donation this holiday season to this amazing family...no amount is to small! You can make a donation by clicking on the Chip In link on the right of the screen! Thank you so much!

Happy Thanksgiving!

Dearest Erin, we love you and help is on the way :)

(To my fellow bloggers please help me rally around this family and share their story and the chip in on your blog)

Family + Fun = Memories

2011-06-19T23:07:00.003-04:00

Happy Father's Day Dad!

You are an amazing Dad, and a super amazing Grandpa!

For a good laugh, the cow that snuck into your yard. Most people would chase it out of the yard but Blair took pictures!!!

Another cow on the wrong side of the fence!

The 'Big Guy' playing baseball! So proud of him!!!

The 'Bigs' on Mackinaw Island. It was wonderful having my parents there with us this year! Great memories were made!

The 'Babies' in Mackinaw City. Nope, they are NOT twins. It's starting to look like it though :)

Our big girl! Notice her toes in the picture, silly girl!

Ty with Grandpa!

Grandma & Grandpa with all their munchkins!

Bryce & Mommy! So proud of him. He biked the island w/out training wheels!

The boat ride back to the city!

Our whole family!

Brady & Bryce at Mill Creek campgroud!!!

Ty-bers soooooooo excited to be out of his car seat!!!

Happy Father's Day!

We love you Dad!!!

Powerful!

2011-05-25T09:48:00.000-04:00

Woot! Woot! Very powerful PSA aired during Glee last night. AWESOME!!!

Have you seen it? Watch and share!

A Giveaway!

2011-05-17T00:00:00.000-04:00

Go to the Facebook link on the top right of this blog to get entered in our first giveaway. If you are selected you will receive a custom made hat of your choice.

Read the instructions below!

Okay Fans it's GIVEAWAY time, here is how it works! For the next 48 hours everyone will have a chance to leave a comment on F & F's Facebook wall (this will be your entry), it will close Wednesday morning at 10:30 EST. In that post please let me know which hat you love and would like to receive if you win. Also please share our page on your wall mentioning the giveaway. If we can reach 150 'likes' by the close time on Wednesday, there will be 2 lucky winners instead of 1! I will then comment on each post and assign you a number. The drawing will be held Wednesday and the winner(s) will be announced! Ready. Set. Go.

Please make sure you click on ALL photos to see all the hats available, there are more than initially show up!

Thank you to all the awesome supporters of our little business!

P.S. If you are a blogger and you mention this giveaway in a post you can get a second entry!!!

Make sure you mention this on the F & F facebook wall so you get credit for the 2nd entry!

Picture overload! Look how the babies are growing!

2011-03-25T23:53:00.004-04:00

Oh my goodness! I can't believe how long it has been since I posted last. In all honesty we are busy! Very busy!

We have some new exciting things we are working on. My husband is officially launching a photography business. Below you will find several pictures taken by him of our babies! So proud of him!

I am currently working on also launching a business with my Mom. Freckles and Firecrackers will be an online children's boutique (inspired by my red-headed-babies). Featuring handmade crocheted hats by my Mom along with several other essential children's item! Below you will find several of our hats!

All of these things combined with all the activity that comes with raising four young children keeps us running. We are so excited for things to come. I promise to TRY to get to the blog more. The Tennessee Grandpa is NOT pleased with the lack of activity on Kaitlyn's Korner. Sorry Dad!

To stay in touch with us on a daily basis find me on facebook, Jenee Skocelas Ross.

Hope you enjoy the pictures! Kaitlyn at 19 months and Ty at 7 months! I would love to hear your thoughts!

My feelings on the "R" word...Again!

2011-03-01T20:09:00.000-05:00

This is a portion of a letter written to Sarah Palin asking her to take full advantage of her platform and become an advocate and educator for Down syndrome and all intellectual and physical disabilities. The reason I am sharing it is because I feel it truly explains why we as a society really need to think before we speak, and more specifically why we need to remove the "R" word (retarded) from our vocabulary. I've been trying for a couple weeks now to find the words to write on this issue. I think the letter to Sarah Palin written by leaders of the Oz Squad hit the nail on the head. So with their permission I'm sharing a portion of the letter. Please read on, change your thinking, and become a voice and help end the use of the "R" word....

Everybody knows and agrees that the word "retarded" used in a clinical setting defines a group of individuals as having limited cognitive abilities. In this respect, the term carries similar effects as racial or sexual orientation categorizations, in that it invokes a specific class of individuals with immutable characteristics.

But what not everybody seems to realize is that the current, common definitions of the word "retarded" as stupid, wrong, ineffective... the catch-all for anything that is annoyingly deficient, are steeped in our cultural view of people with mental retardation.

So whether one is using the term as an insult or to raise laughs through satire, the speaker is tapping into our common cultural understanding and belief that people with mental retardation are characterized by those negative definitions listed above. The speaker references a group of individuals defined solely by their cognitive limitations, denying them their individual personalities, and by extension their essential humanity. He agrees that this group is inferior and worthy of our scorn. This use of the word "retarded" has become so deeply ingrained in our society that the user probably doesn’t even realize that he has done this.

Many people, when called out on their use of the word, insist that they meant no harm to the mentally retarded community, that their use of the word had nothing to do with this minority group. These people must be made aware that there is no separating the insult/joke from its basis for understanding it.

No one believes that Rahm Emanuel or Rush Limbaugh thought that they were insulting those with true mental retardation when they called people whose ideas they objected to "retarded." But we do believe that both men were making the point that their targets' ideas were of so little merit that they deserve to be grouped with an undesirable category of people. Both the direct target of the insult, and the class of people it refers to, are indisputably demeaned by such a slur. You cannot have one without the other.

Put a simpler way, if people with mental retardation were generally well-respected and thought highly of, the insult "retarded" would not exist.

Having the government remove the term retarded from the books, and having the medical community change the diagnosis terminology to "a person with intellectual disabilities," is not enough to eradicate the insult. The public must be made aware of how the insult relates to and hurts an entire group of people. This is not a word police PC thing, rather it is a matter of common decency.

Some argue that the insult "retarded" will simply be replaced by another word that is just as hurtful to the intellectually disabled community. But just because some group of the population will always turn clinical or descriptive terms into epithets does not mean that we should condone it. Such a standard would condone the use of virtually any racial, ethnic, or sexual orientation slur.

Thanks for reading, and please help Spread the Word to End the "R" Word.

Watch this video, it shows just how overused that word is in our society, and how so many people don't think before they talk! It makes me ill!

Today we went to a party...

2011-02-20T00:19:00.000-05:00

The best kind of party.

My best friends were there, my sisters, bonded by that extra special chromosome.

We had an amazing time. The occasion was to celebrate life, the life of our special almond eyed wonders who have enhanced our lives in countless ways. One of them being the new family that was created along the way of this extra special journey. These girls have become my rock, it is a sisterhood few understand.

Below is a great picture. For the first time we were all able to be at the same place at the same time.

The host of the party was Erin, many of you know her as mommy to Gabriel over at Gabriel's updates. Her little Bella turned one this past week giving us one of many reasons to have a party. Thank you Erin for inviting us all over!

You also see Dina and her little man Tyce, Tyce is the youngest in our group. He is quite a cutie pie. Dina blogs about their new journey at Entyced.

In the middle is Kaitlyn and I and Angie and her pretty girl Lily. Both our girls have had amazingly similar paths. Our girls are only 5 months apart and we only live a couple miles from each other.

Next over to the right is Cathie and her little guy Ian. He is a doll. He is the oldest in our group of 6 turning 3 this Spring. He was so much fun to watch, he is a smart little guy.

Right below Cathie is Jen and the beautiful Abigail. Abby turns 1 next month. Kaitlyn and Abby are soooo similar. From their chubby little fingers and thighs, to their cute little grins. I love those girls!

The Beautiful Abigail

Little Tyce

Gabriel with his award winning smile!

The signing time genius, Ian!

The lover and hugger of the group, Ms. Lily!

My beautiful baby, Kaitlyn!

Kaitlyn, Abby, Tyce, & Ian

Lily & Ian

Kaitlyn & Gabriel

The birthday girl Isabella

Erin gave me the honor of making the treats for the party today!

She wanted an owl and monkey theme! So this is what I came up with!!!

It was a G-R-E-A-T Saturday!

I am very thankful for these girls, their babies, and their whole families for being in our lives!

Happy Valentine's Day from Tennessee

2011-02-14T12:42:00.000-05:00

This week we are in Tennessee visiting my parents!

Here are a few pictures of my Valentines from this morning!

Happy Valentine's Day!

The Blizzard of 2011: Our Snow Day

2011-02-03T23:16:00.002-05:00

Wednesday, February 2 was to be the Blizzard of the century. The Meteorologists were predicting snowmageddon. Locally in West Michigan we were told to expect 17 inches of snow in a 12 hour period with 35 mph winds.

We were excited, Brady, Bryce and I that is. Blair had to drive to work in the middle of it all so he didn't share our excitement. But the boys and I knew this was going to be a guaranteed SNOW DAY!

The plan was for a lazy day in our pajama's. Movies, playing inside and out, a little baking, and some hot chocolate! I think we pulled it off! We had a great day together...

We went to bed Tuesday evening and barely an inch of snow had fallen. When I woke up the next morning, this is what we saw!

Well I don't know exactly how much snow we got. It was a lot though! There was so much blowing and drifting it was impossible to measure! Blair made it to work just fine. The babies stayed warm in the house and so did we the majority of the day.

The dog, our Koda Bear LOVES the snow! She can barely sit still in it. The snow makes her crazy. The only reason she is sitting still for the pictures is because I am bribing her with a snow ball. She loves to eat snow balls!

FYI, Koda's breed is a Dogue de Bordeaux, you know, the dog from the Turner and Hooch movie. The verdict is still out as to whether or not we will breed her. We planned too buuuutttt (sigh) we've been a smidge busy. We will see.....

As soon as Blair got home from work it was time to dig out from underneath all that snow. The boys could not wait to get out there! I'm pretty sure this is the most amount of snow the boys have seen.

Bryce is counting the days until he can use the snow blower, drive the snowmobile and do ALL the other stuff "mans" get to do. Love him!

Despite the major storm we had it left as quick as it came. By mid afternoon it was nice and sunny. We don't see the sun much during our long Michigan winters. The boys had fun playing with their shadows.

They are so goofy. They loved standing right under all the snow Blair was blowing. Brrrrr...

When they came in it was time for hot chocolate, marshmallows, and cookies.

They love making it themselves.

We had a great day. We still need to get out ice skating a few times and then I think our winter activities will all be checked off our list. Then the snow needs to leave and Spring needs to come...

Some Pictures From This Morning

2011-01-31T13:45:00.001-05:00

Can you see the diva?

We've been keeping a secret...(and NO we are NOT pregnant)

2011-01-25T23:34:00.002-05:00

Our beautiful little girl has been working so hard and making us SO PROUD!

Take a look at our secret!

Surprise!
She's walking!!!

It's been a slooooooow progression that started around Thanksgiving. First it was 2 steps, then a week later 4 steps, and at 6 steps we hit a plateau. Her SureSteps come in soon and I am convinced that having the ankle/foot support will help her to the next stage with her walking. But last night something clicked. She became a walking fool. We are so very proud!

She's just 17 months old!

(~~take that Down syndrome statistics~~)

Below are some cute pictures of my babies!

For all couples thinking of having children... (This is a must read)

2011-01-20T09:52:00.002-05:00

Follow the lessons below to find out if you are truly ready!

Lesson 1

1. Go to the grocery store.

2. Arrange to have your salary paid directly to their head office.

3. Go home.

4. Pick up the paper.

5. Read it for the last time.

Lesson 2

Before you finally go ahead and have children, find a couple who already are parents and berate them about their...

1. Methods of discipline.

2. Lack of patience.

3. Appallingly low tolerance levels.

4. Allowing their children to run wild.

5. Suggest ways in which they might improve their child's breastfeeding, sleep habits, toilet training, table manners, and overall behavior.

Enjoy it because it will be the last time in your life you will have all the answers.

Lesson 3

A really good way to discover how the nights might feel...

1. Get home from work and immediately begin walking around the living room from 5PM to 10PM carrying a wet bag weighing approximately 8-12 pounds, with a radio turned to static (or some other obnoxious sound) playing loudly. (Eat cold food with one hand for dinner)

2. At 10PM, put the bag gently down, set the alarm for midnight, and go to sleep.

3. Get up at 12 and walk around the living room again, with the bag, until 1AM.

4. Set the alarm for 3AM.

5. As you can't get back to sleep, get up at 2AM and make a drink and watch an infomercial.

6. Go to bed at 2:45AM.

7. Get up at 3AM when the alarm goes off.

8. Sing songs quietly in the dark until 4AM.

9. Get up. Make breakfast. Get ready for work and go to work (work hard and be productive)

Repeat steps 1-9 each night. Keep this up for 3-5 years. Look cheerful and together.

Lesson 4

Can you stand the mess children make? T o find out...

1. Smear peanut butter onto the sofa and jam onto the curtains.

2. Hide a piece of raw chicken behind the stereo and leave it there all summer.

3. Stick your fingers in the flower bed.

4. Then rub them on the clean walls.

5. Take your favorite book, photo album, etc. Wreck it.

6. Spill milk on your new pillows. Cover the stains with crayons. How does that look?

Lesson 5

Dressing small children is not as easy as it seems.

1. Buy an octopus and a small bag made out of loose mesh.

2. Attempt to put the octopus into the bag so that none of the arms hang out.

Time allowed for this - all morning.

Lesson 6

Forget the BMW and buy a mini-van. And don't think that you can leave it out in the driveway spotless and shining. Family cars don't look like that.

1. Buy a chocolate ice cream cone and put it in the glove compartment.

Leave it there.

2. Get a dime. Stick it in the CD player.

3. Take a family size package of chocolate cookies. Mash them into the back seat. Sprinkle cheerios all over the floor, then smash them with your foot.

4. Run a garden rake along both sides of the car.

Lesson 7

Go to the local grocery store. Take with you the closest thing you can find to a pre-school child. (A full-grown goat is an excellent choice). If you intend to have more than one child, then definitely take more than one goat. Buy your week's groceries without letting the goats out of your sight. Pay for everything the goat eats or destroys. Until you can easily accomplish this, do not even contemplate having children.

Lesson 8

1. Hollow out a melon.

2. Make a small hole in the side.

3. Suspend it from the ceiling and swing it from side to side.

4. Now get a bowl of soggy Cheerios and attempt to spoon them into the swaying melon by pretending to be an airplane.

5. Continue until half the Cheerios are gone.

6. Tip half into your lap. The other half, just throw up in the air.

You are now ready to feed a nine- month-old baby.

Lesson 9

Learn the names of every character from Yo Gabba Gabba , Backyardigans, the Disney channel, Fresh Beat Band, and Sesame Street. Watch nothing else on TV but Nick Jr., the Disney channel or Sprout for at least five years. (I know, you're thinking What's 'Sprout'?) Exactly the point.

Lesson 10

Make a recording of Fran Drescher saying 'mommy' repeatedly. (Important: no more than a four second delay between each 'mommy'; occasional crescendo to the level of a supersonic jet is required). Play this CD in your car everywhere you go for the next four years. You are now ready to take a long trip with a toddler.

Lesson 11

Start talking to an adult of your choice. Have someone else continually tug on your skirt hem, shirt- sleeve, or elbow while playing the 'mommy' CD made from Lesson 10 above. You are now ready to have a conversation with an adult while there is a child in the room.

This is all very tongue in cheek; anyone who is parent will say 'it's all worth it!' Share it with your friends, both those who do and don't have kids. I guarantee they'll get a chuckle out of it. Remember, a sense of humor is one of the most important things you'll need when you become a parent!

Dear Kaitlyn,

2011-01-05T16:03:00.001-05:00

I need you...

You mean so much to me. You give me so much without asking for anything in return.

Unconditional love, Hope for the future, A giving spirit

You make me a better person, you make me want to be a better person. You change hearts, you bring people together, you inspire me to try harder,and keep trying, to push through the difficult times wearing a smile! You are a determined free spirit. You see the good in everyone, you forgive without question. You are a true gift from God. God knew I needed you. He sent you to me, to us, to change lives...

I need you...

I need your curiosity...

I need your wonder...

I need your determination (no matter how many times we tell you "no"...)

I need your tiny little feet...

You have helped us meet the BEST friends!

You have brought so many people together!

I need you. You are so carefree and kind!

You give us your heart with no strings attached!

I never knew how much I would need you...

You are one AMAZING little girl!

Love,
Mommy

Just playing with pictures

2011-01-04T21:31:00.019-05:00

Lots About Kaitlyn...and A Couple Christmas Pictures

2010-12-30T23:46:00.012-05:00

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!

Wishing Everyone A Joyous Christmas Season...

2010-12-21T00:22:00.002-05:00

From our home to yours...

Merry Christmas

and

Happy New Year!

Love,

Blair, Jenee, Brady, Bryce, Kaitlyn & Ty

Pretty Piggies

2010-12-07T14:48:00.001-05:00

Kaitlyn's first pedicure!

It was difficult painting a moving target but oh was it fun!

How we measure a year....

2010-11-17T12:19:00.019-05:00

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.

Make an on-line slide show at www.OneTrueMedia.com

Finally...

2010-11-16T14:38:00.008-05:00

......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!

I'm So Thankful...

2010-11-11T13:16:00.005-05:00

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!!!

Laughing Out Loud....

2010-11-02T08:47:00.004-04:00

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)

If the video won't play click here to go straight to the video on You Tube.

The video was made for their youth program at church!

Beautiful

2010-10-29T09:20:00.002-04:00

This is a beautiful video made by a young women who's sister has Down syndrome. Some of my favorite kiddos are featured. Take a look...

Kaitlyn is towards the end :)

My Angel

2010-10-26T13:53:00.001-04:00

Written by Paul Dammann

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."

"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Lots Of Pictures Of My Favorite Kiddos

2010-10-14T09:12:00.048-04:00

We had the most amazing weekend. The weather was perfect. The Fall colors were breathtaking, and we were able to spend some much needed time with family. Between Blair's sister and us we have 7 munchkins, 6 boys, and little Kaitlyn. It is difficult to find time to get together, life is crazy busy and they live 3 hours North of us.

The big boys spent 2 days outdoors. They had a blast.

Bryce is getting so big. His looks are changing and he is looking more and more grown up.

This little guy is my 20 month old nephew. He is at such a fun age and is so comical.

(and absolutely adorable)

Below is a picture of Blair's mom and dad. Last Sunday they celebrated their 40th wedding anniversary on 10.10.10.

How cool!

Below is my little beauty Ms. Kaitlyn.

She LOVED being outside.

She even learned to climb the steps on the deck. So proud of her!

The big boys had a chance to go canoeing. It was the first time for Brady and Bryce. They really liked it. From shore I could hear Bryce saying, "Ummmm...Uncle Dan, it feels kinda tippy." (smile)

Another nephew, he is 4 weeks younger than Bryce.

To be honest they fought like cats and dogs. =) They are too much alike.

I love this picture of him.

The brave uncle taking the four bigs on a canoe ride.

My oldest nephew, the comedian of the group.

He is so witty and really funny. I can't believe he is 8 years old already.

An adorable baby and his beautiful Mommy.

Grandpa and Bryce enjoying a quiet moment.

It was so peaceful up there.

Me and my favorite little girl.

The boys played outside games all weekend. Brady learned to hit a baseball. He was so proud of himself as were we. He put in a lot of hard work, he was glowing.

The littlest babe.

Ty spent most of his time indoors being snuggled by one of us.

Caramel apples, yum!

Beautiful baby!

So relaxed!

I LOVE THIS PICTURE!

My baby girl!

Bryce

Grandma & Grandpa

We made many memories!

Oh yes. and the favorite tree house!

We had a great weekend. Hopefully we can do it again soon!

Northern Michigan Fall Beauty

2010-10-13T17:08:00.018-04:00

We were surrounded by God's beauty last weekend!

7 Years Ago Today...

2010-10-11T11:26:00.011-04:00

Blair became my husband,

we became a family,

and we started our journey together!

Never in a million years could I have imagined where we would be today.

We've been given many blessings, some wanted, others not, but blessings non the less.

We've been blessed with four beautiful children, one miscarriage, and yes, Down syndrome. A congenital heart defect, heart surgery, and the stress of multiple pregnancies. We've had personal health scares and dealt with my Mom having life threatening cancer (she's now in remission). We've been blessed with great friends, and bad friends. We've learned to live with a peanut allergy,work through heart ache, and have learned how to always find the good in all the bad.

We've grown together and apart and back together again many times. We've grown as individuals, as a couple and as a family.

We've learned so much about life and its true meaning. We now enjoy the small things and continue to try to value the things in life that REALLY matter, our loved ones.

Our relationship is constantly a work in progress, but a masterpiece is being formed and it's turning out to be so beautiful. Our journey has been amazing and I thank God for putting us together to share these experiences.

Happy Anniversary to my amazing husband, thank you so much for being the amazing man and father that you are. I LOVE YOU!

(The song playing was our wedding song)

Up North

2010-10-08T10:33:00.002-04:00

We are headed to Northern Michigan this weekend. I will write all about our adventures when we return. I guarantee there will be some beautiful Fall pictures. Check back Monday!

Have a great weekend!

Go Michigan!

An AMAZING Deal

2010-10-07T11:00:00.003-04:00

On Signing Time DVD's at Best Buy. I just bought volumes 1-7, for $37 including shipping!

To get to Best Buy click on the next two links:

Volumes 1-3 retail for 59.98, sale price 14.99

Volume 4-7 retail for 99.98, sale price 14.99

What an AMAZING deal!!!

This is a great series for all kiddos, Brady and Bryce LOVE them, it is especially great for children with Down syndrome. The videos are so much fun to watch and everything is set to music. This is one DVD you want your kids to watch!

Here's a couple clips, just incase you are new to Signing Time, there are tons more on youtube!

Remember to pause the music at the bottom of the page before watching the videos. (ctrl-end)

Love this...

2010-10-05T22:13:00.005-04:00

Love her...

Creed Of Children With Down syndrome
Author Unknown

My face may be different, but my feelings the same.

I laugh and I cry and take pride in my gains.

I was sent here among you to teach you to love as God in the heavens looks down from above.

To Him, I'm no different. His love knows no bounds;

It's those here among you in cities and towns that judge me by standards that man has imparted,

But this family I've chosen will help me get started.

For I'm one of the children so special and few that came here to learn the same lessons as you.

That love is acceptance, it must come from the heart;

We all have the same purpose, though not the same start.

The Lord gave me life to live and embrace, and I'll do it as you do? But at my own pace.

Life With A Peanut Allergy

2010-10-05T00:55:00.007-04:00

SEVERE NUT ALLERGY

BRYCE

Please don't feed me without asking my Mom or my teacher!

Back when Bryce was 12 months we offered him peanut butter on toast. Never in a million years could I predict what would happen next. For the first time ever Bryce didn't want to eat (he knew). At that age he was a human garbage disposal. He had taken about 2 bites and began sobbing. He played with the toast in his fingers and rubbed his eyes. He instantly started swelling, his face became puffy, he looked like the elephant man, SCARY! No anaphylaxis this time, we were lucky.

So our journey with a peanut allergy began. We LOVED peanut butter, Blair and Brady use to eat it out of the jar. Not anymore! We became a nut free household.

We took Bryce to the pediatric allergist. He was tested for all nuts. The scoring is on a 1-4 scale, 4 being the worst. That day Bryce was given a 4 ++ for peanuts, and a 2 for cashews. It was about as scary as it gets. In that moment we started to realize just how serious it was and just how lucky we were that he didn't experience anaphylaxis the first time he had peanut butter. Our lives changed, everything has changed.

We carry 2 Epipen Jr.'s wherever we go along with Benadryl. It is so scary. You would not believe how many things contain nut ingredients. Strawberry supreme cake mix, peanuts, plain M&M's, peanuts, Boo Berry cereal, peanuts. And these are items that CONTAIN peanuts. So many other items may contain, or are manufactured with. We are really limited in what he can eat. Halloween, a nightmare! School a NIGHTMARE! Birthday parties, family and friend get togethers, pot lucks, showers, weddings, all a huge nightmare. We can't attend. Many people think that if an actual nut isn't in the ingredient list he is safe. NOT true. The only brand of chocolate he can have is plain Hershey's. All other brands have traces of nuts. The only cookies he can eat are homemade by me. It's been a struggle.

Above is the poster I made for his school. They have become a nut free room. His teacher is amazing. We are so thankful for her and the MANY precautions that she has taken to keep Bryce safe. Popularity with the other parents isn't the greatest. Holidays are done differently. I feel bad. But this is life or death. In school his Epipen goes with him everywhere. I'm nervous for the day he has a substitute teacher. Bryce is very aware of his allergy. He knows to ask, "does that have peanuts?" My fear is that someday he eats something given to him by a trusted adult who forgets or doesn't know better, he would STOP breathing. Life or death. Next year is going to be even WORSE. He will be in Kindergarten and eating lunch at school. The cafeteria and all the PB&J's. Not sure what we will do.

We have taken many precautions. The epipen is always wherever he is. He wears a Peanut Allergy wrist band and he has a Nut Allergy shirt for all those scary outings. Family and friends have been great. But to be honest he hasn't been left with many people. I've been able to control his environment. Scary!

If your child is in a classroom with a child with Nut allergies please try to be tolerant and understanding. This can happen to anyone. There are many allergies out there but few of them are life threatening. Bryce will be allergy tested again in the next couple years. The chance of him outgrowing this is almost zero. We are just hoping and praying the severity decreases.

Yep, a day in the life of a peanut allergy, all I can say is read labels. And be so careful.

A Morning At Our House

2010-10-03T13:03:00.012-04:00

It was a good morning. It's always eventful here, but there wasn't any fighting, NO time outs, and Kaitlyn didn't get a single boo-boo. She is VERY mobile and mischievious. The bumps and bruises that are always on her forehead are proof. :)

Daddy is working a 16 hour day, so today I'm flying solo :(

So far so good, but we still have 6 hours until bedtime and 8.5 until he is home, crossing our fingers that the day stays this good.

As I scrolled through all those pictures all I saw was eyelashes.

Why can't mine look like that! :)

All 4 kids have beautiful eyelashes, and they got them from their Dad!

In the top and bottom picture you can see our new gate.

Neither Kaitlyn or the dog are big fans!

It is saving my life, and keeping her safe, I LOVE IT!

Below are several pictures of the 14 month old tot doing one of her favorite things.

Torturing, I mean loving her baby brother.

She's learned some naughty things and is keeping us on our toes!

"No, no Kaitlyn," comes out of our mouths a lot!

"But I just want to kiss him," she says.

"and love him"

"and squeeze his toes"

"and pinch his squishy thighs"

And for the sake of making her daddy crazy, she won't keep her hands off the TV.

So all in all its been pretty quiet.

No guarantees it will stay that way.

The gear toy in the picture above is Kaitlyn's favorite toy!

The boys are getting so BIG!

(eyelashes again, my goodness)

Have a great day!

Day 3/31 complete!

Did ya know...Some facts, rants, and pointers!

2010-10-01T23:24:00.006-04:00

My name is Kaitlyn.

I have Down syndrome. It is something I have, and NOT who I am.

I am not " a Downs."

I am cute, funny, dramatic, curious, strong willed, determined, and very loving.

In honor of Down syndrome awareness month and day 2/31

Good education regarding people first language-

Unfortunately people first language is rarely used. It really bothers me. Read on, be educated, and always put the person first. Kaitlyn isn't a Down syndome girl. She is a girl with Down syndrome. It isn't who she is, it is merely what she has, it is only one small part of her.

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome). Do you know that all of our local hospital lab documents that are computer generated have the diagnosis as Down's Syndrome. Really.

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs". (Biggest pet peeve)

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Here are some basic guidelines for using People First Language:

1. Put people first, not their disability* A "person with a disability", not a "disabled person"* A "child with autism", not an "autistic child"

2. Use emotionally neutral expressions* A person "with" cerebral palsy, not "afflicted with" cerebral palsy* An individual who had a stroke, not a stroke "victim"* A person "has" Down syndrome, not "suffers from" Down syndrome

3. Emphasize abilities, not limitations* A person "uses a wheelchair", not "wheelchair-bound"* A child "receives special education services", not "in special ed"

4. Adopt preferred language* A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"* "Typically developing" or "typical" is preferred over "normal"* "Accessible" parking space or hotel room is preferred over "handicapped"

Guidelines from the National Down Syndrome Congress

http://www.theupsideofdowns.org/down-syndrome/proper-language-guide

Tomorrow I promise to post on a much lighter note and get off my soap box :)

Heart Melting Smiles & A Challenge

2010-09-30T23:27:00.005-04:00

Today I finally was able to get some pictures of Ty's great smile. He's been smiling for a couple of weeks now but I could never get a good picture. Well today I did. He's pretty cute huh?

His eyes for the longest time looked grey. Not anymore. I think we have another blue-eyed baby.

I absolutely love this picture of Bryce and Ty. Bryce is an amazing big brother to Kaitlyn and Ty. He sincerely loves the babies, enjoys helping me, likes to play with them, and begs to hold Ty. He's also proven to be quite the protector. Such a GOOD boy! I apologize for not including Brady in this post. The poor thing is at school all day long.

Today is October 1st, it will definitely be a busy month. Life is always busy with our 4 wee ones. This month I will celebrate another birthday, 7 years with my adoring husband, a weekend "up north" with family, Halloween, and the everyday mundane tasks that keep me going all day. On top of it all I have taken a pledge, excepted a challenge. In honor of Down Syndrome Awareness Month I have pledged to blog daily, I have taken the 31 for 21 challenge.

This month I will write about our crazy life with 4 kids, peanut allergies, bullying, Ty's birth story (finally), Kaitlyn's day to day, her therapies, health status, and much, much more! I promise to include tons of pictures and I will try to keep it interesting. Most importantly I will talk about life with a child with Down syndrome, the ups, downs, and all the amazing joys in between. I will include pet peeves (*hint, people first language and the "R" word). So hang around, keep coming back and I'll try to keep it interesting.

See you tomorrow!

Buddies, Fall, Family & Friends

2010-09-27T14:03:00.007-04:00

I think each time a new season arrives I catch myself saying it's my favorite time of year. Fall has arrived in Western Michigan and I'm loving it. We've spent most Saturday's cooking/baking. First was our favorite cinnamon rolls, then it was chicken noodle soup, and chili is next. It is apple season, there will be plenty of apple crisp (my choice for a birthday cake) and many honey crisp apples on the counter for eating. Yum!

Fall also is the Buddy Walk, October is Down syndrome awareness month, and it is also the anniversary of Kaitlyn's heart surgery. Many thoughts and emotions this Fall. Kaitlyn is doing AMAZING, she is reaching so many milestones and growing so fast. I can't believe she is almost 14 months old! She has taken a curious interest in her new baby brother and enjoys spending time with him (clawing his eyes out :).

This past Saturday was our Buddy Walk. Our closest friends and family came out to support my favorite buddy. The symbolism of the walk combined with watching our favorite people love on my children made my heart full. THANK YOU so much to all of you for coming. We were also joined by our newest closest friends. Kaitlyn's diagnosis of Down syndrome has taken us on such an amazing journey. I've met 3 local special moms and their kiddos. They've become my family. I am such a better person with them in my life and again I'd like to thank God for his miraculous planning. I don't know where I'd be without Him and my new friends!

Below you will find the latest pictures of Kaitlyn as well as some Buddy Walk pictures and a video. Enjoy!

Kaitlyn 13 months old

Our team, We're In Kaitlyn's Korner!

My favorite girls!

Abigail 6m, Lily 18m, Kaitlyn 13m

Pretty Girls

-Pause the music at the bottom before pushing play-

(ctrl-end)

If you can't see the video click here.

Buddies, Fall, Family & Friends

Make video montages at www.OneTrueMedia.com

It's Almost Time

2010-09-17T22:58:00.003-04:00

If you don't like the way the world is, you change it. You have an obligation to change it. You just do it one step at a time. -- Marian Wright Edelman.

This next Saturday the 25th is one of my favorite days of the year. It's the Buddy Walk. We are joined by our closest family and friends, and we are all there to honor Kaitlyn. We celebrate her life, her triumphs and achievements. We come together as a community to promote awareness for Down syndrome. Year round I make an effort to stomp out the stereotype, and on this day I feel change, I see change, and it gives me hope for Kaitlyn and her future.

Please accept this as your official invitation to walk with us, we would love to have you! To join our team go here. We are team Kaitlyn's Korner.

If you are unable to walk with us and would like to make a donation to Kaitlyn's team, We're in Kaitlyn's Korner, we would be so thankful. All the money raised goes to our local Down syndrome association. They do so much work behind the scenes year round to do so much good for the Down syndrome community. They have been such a support to us and we are pleased to be able to raise funds and give back. You can donate by clicking the fundraising link at the top left of the screen.

We thank you!

Growing Like A Weed, 6 Weeks In Pictures

2010-09-13T22:31:00.007-04:00

Ty David

-My last evening pregnant-

-We meet-

-A couple hours old-

-1 week old-

-2 weeks old-

-3 weeks old-

-4 weeks old-

-6 weeks old-

Ty = LOVE

Blue Eyes and Rubber Ducks

2010-09-07T21:26:00.003-04:00

I've needed some wall art for our bathroom.

Here's what we came up with.

I think this will definitely work!

She's beautiful!

A Birthday Party Fit For A PRINCESS!

2010-09-06T23:41:00.008-04:00

I had an amazing birthday party!

It had me smiling all day long!

It was a day fit for a princess!

There were balloons...

and cupcakes...

(don't you just want to lean in and eat one)

and a really pink cake...

and boy were they good!

Just ask my cousin Jack!

Many of my favorite family and friends were able to come help celebrate!

Wyatt & Macey

Parker

and my Grandpa R and S.

My Aunt Jenna was there of course snuggling my baby brother Ty.

All the older kids played a lot of games. I can't wait until I'm a little older and I can get in on the fun!

The sack race was a big hit!

Oh, and all the girly presents! It's about time we get some girl stuff in the house. My brothers have too many trucks! Thank you to everyone for all the special gifts!

Below is a baby doll made just for me by my Grandma S.

She has red hair and blue eyes just like me!

It's cake and cupcake time. Yummy!

What a great ending to an already awesome day!

Thank you again to everyone who was able to come!

And also a big thank you to all my computer friends out there who follow my story and share my dreams!

Love,

Kaitlyn

Kaitlyn's Baby Treadmill

2010-08-27T02:19:00.003-04:00

Last week, after much anticipation, Kaitlyn's treadmill arrived.

Kaitlyn will be using it 8 minutes a day, in 1 minute intervals, 5 days a week.

A study was done at the University of Michigan lead by Dr. Dale Ulrich. What they found is that infant/toddlers with Down syndrome, who would typically walk at an average of 24-28 months of age, walk sooner when exposed to treadmill therapy. Most kiddos who routinely use the treadmill walk between 18 1/2-19 1/2 months old.

The study is done, but because of further funding they are able to allow other children with Ds to use the treadmills. So we will see! We are excited for this opportunity. Kaitlyn already is stepping. I will update on her progress. Below is a video telling about the training along with a few pictures of Kaitlyn and Dr. Ulrich. If you have any questions please let me know!

Another BIG Milestone

2010-08-21T23:36:00.005-04:00

I apologize for my lack of blogging! We are 3 weeks in as a family of 6 and I will admit we are having some CRAZY, chaotic moments. But we also have some wonderfully "normal" moments where life is amazing and our family feels complete.

Even though things are different in our house having a newborn again, Kaitlyn hasn't missed a beat. We are on a PT/OT therapy break until September and honestly she has made more progress in the last weeks than all of last year. Her gross motor skills are developing FAST! She is crawling everywhere and getting into everything. She keeps us on our toes!

2 weeks ago on a Tuesday, Ty and I came home from the hospital. It was a busy day. I was glad to be home but it was crazy. That night the kids went to bed late. We laid Kaitlyn down in her crib, walked to the door to shut of the light, turned around and guess who was standing up.....yep, Ms. Kaitlyn. One day shy of her 1st birthday, she pulled herself to standing. She's amazing!!! We are so proud! That night, we were sooo tired. Blair right away at 10:30 at night had to take her crib apart and lower her mattress. Silly girl! Since that day she has been pulling herself up on everything.

More exciting news,

Yesterday Dr. Dale Ulrich from the University of Michigan made a house call and delivered Kaitlyn her baby treadmill.

We are so grateful for this opportunity.

I will blog about this tomorrow with pictures and a video!

Below is a picture of Ty taken by Blair last week, he was 2 weeks old.

This little 8 pounder has stole my heart!

Our family, my husband, the boys, Kaitlyn and little Ty have my heart overflowing!

Ty David, 2 weeks old!

Kaitlyn, Cupcakes, & Ty

2010-08-08T22:42:00.009-04:00

Happy 1st Birthday Kaitlyn!

2010-08-04T14:04:00.006-04:00

What a special day today is, our little girl is one. Emotions are high as we reflect back on the last 12 months. She has brought us such joy and we thank God each and everyday for allowing us to be her parents. Below is a video montage that I created. It has taken me weeks to make and I am so excited to share it. It is a little long, it was too hard to cut things out. She had an amazing first year! Take the time and watch the video to the end. It gets better and better as it goes on. Enjoy!

-Refresh the page if you can't see the video-

(Pause the music at the bottom before pushing play)

Photo and video editing at www.OneTrueMedia.com

Welcome to the Family......Ty David!!!

2010-07-31T18:22:00.007-04:00

Jenee and Ty are doing well after a longer than anticipated c-sec. Ty was difficult to retrieve because he had dropped so low and a section of her uterus was apparently transparent so it took some time to stitch her up. Thank God it never ruptured! Thank you for having us in your thoughts and prayers. Jenee...Thank you for another beautiful child......Love Blair

Only a few short hours...

2010-07-29T23:00:00.002-04:00

Our baby boy will arrive in a few short hours and my little Kaitlyn will be a BIG sister. Thank you so much to everyone for all the thoughts and prayers. We will post an update as soon as we are able.

Countdown To Baby...

2010-07-27T18:06:00.002-04:00

Just a quick update for everyone on the Ross household...

We are having a baby Friday morning. Our little man has showed no signs of arriving early so my csection is scheduled for 7:30am on this Friday, July 30. Time has flown by. I'm getting nervous, have lost control of my emotions, and am sooooo ready to meet this little guy! I'm ready to reclaim my body, be a better wife and mother, and so excited to start this next chapter in our lives.

Kaitlyn has mastered going from her belly to a sitting position. It happened slowly over the course of a week and now she does it all the time. We are so proud of her. This was a huge milestone. The only down fall is that she sits up in her crib when we lay her down at bed time. She has always put herself to sleep, we've been really lucky. But this week (of all weeks) she is forgetting she knows how to lay down. She screamed (and she NEVER screams) the first night, I thought for sure the mobile fell on her head :) Nope, she was sitting up half a sleep, once I laid her down she crashed. Silly girl! The second night I thought went better, less crying, no again, she fell asleep in the sitting position, she just laid her head and belly down in between her legs, she woke up mad. She is so flexible!

The boys are doing good. The last weeks they have been asking a lot of questions about the new baby coming. I keep reassuring them that I won't be gone nearly as long as I was when Kaitlyn was born or when she had her heart surgery. They are trying to process it all and figure out where they fit into all of this. I feel good that all will go well and baby and I are home in a couple days nice and healthy.

I received a phone call tonight from my parents down in Tennessee. They told me that they are coming from the birth. We are thrilled. Up until now the plan was for them to wait a few weeks and come after Blair had to return to work. They are going to be able to come then too. My Dad said he just couldn't stay away!It will be nice having them here for the weekend. Blair will enjoy the extra help and I will enjoy the extra visitors, and the boys are ecstatic, and Kaitlyn, well, she loves people and will enjoy the attention. Kaitlyn is doing so much more then she did back in May when they were here last, I can't wait to show her off!

So that's it in a nutshell! We are having a baby, things are going to be crazy in a wonderful kind of way. I look forward to sharing our newest addition with all of you. I showed Blair a few basics on blogger hoping he can post a couple pictures and a few updates. If not I'll try to do it shortly after I get home. Prayers are appreciated! Wish me luck!

Kaitlyn's birthday is next week! Watch for her 1 year video montage, I can't wait to share it!

We're in Kaitlyn's Korner/ 2010 Buddy Walk

2010-07-24T10:46:00.003-04:00

This year I am getting started a little early getting Kaitlyn's team together for the Buddy Walk. Our newest addition will be arriving in 5 days and I anticipate a busy, exhausted month of August. Regardless of the changes about to take place in our house I am determined to not let this years Buddy Walk go by without our participation. Last year we had so much fun with our team and felt good about the money we raised to help support our local Down syndrome Association. Last year we were rookies, but this year I am hoping we can get more participation, team t-shirts, and do even more fundraising. Kaitlyn has had an amazing year and we need to celebrate her! So here is all the info about the Buddy Walk and.....

Why we walk...

Buddy Walk

The Buddy Walk was established in 1995 by the National Down Syndrome Society as a way to celebrate and promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk is supported nationally by NDSS and parent support groups like our Down Syndrome Association of West Michigan.

Saturday, September 25, 2010
Millennium Park, Grand Rapids
Registration 9:30 AM
Walk 10:30 AM
Celebration 11:00AM - 12:30PM

We Walk for Our Kids

Each year, the outpouring of support from families, friends and community members affirms and validates our children and nourishes and sustains families. When you participate in the Buddy Walk and invite others to join you, you introduce your family, friends, co-workers and others to see the Promise, Possibility and Potential of YOUR BUDDY! (Our Kaitlyn)

We Walk to Celebrate

What better way to celebrate Down Syndrome Awareness Month than by hosting a West Michigan community party for more than 1,000 of our closest friends?

We Walk to Bust Myths

The Buddy Walk is the perfect opportunity for our friends and families to see the possibility, promise and potential in persons with Down syndrome! The Walk is a great place to learn about Down syndrome, and break the myths and stereotypes that hinder individuals as they strive to be accepted and be appreciated by the community.

We Walk to Support DSAWM Programs and Services

In 2009 Buddy Walk saw more than 1,000 Walkers raise more than $80,000 for the DSAWM. Proceeds from the Buddy Walk are used for members support, programs and services throughout the year.

Join Us as We Walk in the 2010 Buddy Walk to Support the
Down Syndrome Association of West Michigan!

And our favorite Buddy Ms. Kaitlyn

This year has flown by. Little Kaitlyn will be having her first birthday in just a few short weeks. The past 12 months have truly been amazing, this little girl has accomplished and overcame so much, we are so proud. Her heart surgery when she was just 3 1/2 months was a giant success, her recovery was nothing short of miraculous. She also continues to WOW us with her spunk, determination, and many, many milestones.

On September 25th we will be participating in our second Buddy Walk. The goal of the Buddy Walk® is to promote understanding and acceptance of people with Down syndrome. It also gives us an opportunity to help raise funds for the Down syndrome Association of West Michigan. This organization has been amazing to us and we would love nothing more then to help raise money to allow them to continue all that they do for our local Down syndrome community. The walk also allows us to come together as family, and friends, and join Kaitlyn's team. It is a fun morning of fellowship and fun.

Please consider walking with us and/or donating. No amount is too small. Thank you so much for all your support. The last year would not have been possible without all of our amazing family and friends!

Blair and Jenee

At the top left of this page there is an easy, secure way to make a donation. An email will get sent to you with a receipt of your donation. Thank you in advance, and remember no amount is too small!

Good News / Bad News

2010-07-16T16:42:00.009-04:00

THE GOOD NEWS...

is that Kaitlyn's one year pictures are done!

I've been so excited to share these. I think Blair did a great job!

I hope you enjoy them!

NOW FOR THE BAD NEWS...

I'm on bed rest. Out of the blue at a routine OB check-up yesterday I had high blood pressure and some swelling. I was sent up to the hospital for a non stress test and some blood work. I was sent home with a 24 hour urine test to look for protein, fun times! And I have an ultrasound on Monday. They are wanting to confirm preeclampsia.

The non stress test (NST) went great! The baby boy was very active and passed in the first 20 minutes. I will have a NST twice a week until I deliver. I'm not sure what next week will bring, I am crossing my fingers for delivery. Bed rest and a family with small munchkins doesn't work so well. We are taking it seriously. Blair is staying home so I can rest. It all feels very surreal. I feel 100% fine other than being exhausted. I think that is normal considering I am 38 weeks pregnant though. It is stressful to say the least. It is hard to sit still and watch life go on around me. I'm a SAHM and to watch my husband do my job is difficult. He is doing a great job, but much differently then how I do things. I know he has the hard job right now, so I stay quiet and let them do things his way.

Please pray things go smoothly the next days and weeks!

I'm ready to meet this little guy!

Well I'm off to the hospital to drop off my 24 hour urine test. Boy was that fun, so glad that is done with.....(smile)

Enjoy your weekend, I will from my couch!

Hope you enjoyed the pictures!

I was so excited to share!

Hodge-podge

2010-07-15T00:33:00.011-04:00

Four of my favorite little guys are featured in this post, two of my nephews and my oldest rugrats. These pictures were taken up in Manistee a couple weeks ago. The kids met up there for a day of fun! The weather was perfect and they found a lot to do!

Hope you enjoy the pictures !

Tonight I was catching up on some of my favorite families and came across a part to a very fitting poem.

At least at my house anyway!
I thought some of you would enjoy it, I did!

So I share...

It is the last refrain from "Song for a 5th Child" by Ruth Hamilton.

"Mother, oh Mother, come shake out your cloth, Empty the dustpan, poison the moth,
Hang out the washing and butter the bread,
Sew on a button and make up a bed.
Where is the mother whose house is so shocking?
She's up in the nursery, blissfully rocking.
Oh, I've grown shiftless as Little Boy Blue
(Lullaby, rockaby, lullaby loo).
Dishes are waiting and bills are past due
(Pat-a-cake, darling, and peek, peekaboo).
The shopping's not done and there's nothing for stew
And out in the yard there's a hullabaloo
But I'm playing Kanga and this is my Roo.
Look! Aren't her eyes the most wonderful hue?
(Lullaby, rockaby, lullaby loo).
The cleaning and scrubbing will wait till tomorrow,
For children grow up, as I've learned to my sorrow.
So quiet down, cobwebs. Dust go to sleep.
I'm rocking my baby and babies don't keep."

For any of you who really know me know that my children are my first priority, I constantly put many things off to have the opportunity to soak up every special and routine moment with my munchkins. Sometimes I long for a break or wish my house was more "tidy" but at the end of each day, though usually exhausted, I know I spent the day just how I wanted. Dishes always wait, along with most other chores, and I get "me" time usually late at night when the house is sleeping, like right now. I love it that way, and I love that poem!

Anyway, new topic, hence the title.....

So Kaitlyn is only weeks away from her first birthday. I can't believe how fast time has gone, and the craziest shocker is that my little girl will be a big sister before her first birthday! Because I am anticipating a busy, sleep deprived month of August I have started early putting thought into my little beauties big day. Even though she turns 1 early in the month her party will wait until I can throw her the kind she deserves, the plan is for the end of August.

Tonight we ventured out and had her 1 year photo shoot. She was adorable as EVER before. Her Daddy took some amazing photos and I can not wait to share!

I've also been working on her 1 year video montage. My goodness has that been fun, emotional, and time consuming! She has accomplished and overcome so much in her first 12 months. Hopefully I will have it all ready before our newest brother arrives. I'll admit, the video is LONG. I keep trying to shorten it, but I am having a hard time. I hope despite the length many will enjoy it!

So along with birthdays come presents! I want to ask all the Moms out there...

What would you recommend?

What is your favorite toy/ book/ etc.?
She's not quite ready for the "typical" one year stuff, put she will be soon.

What toys do you love?

And what toys were a flop?

I'd love your suggestions!

I will end here tonight. Morning comes early and again it is quite late, not to mention the crazy storm outside. I have to get to bed while I can still hear it!

Oh how I LOVE a good thunderstorm!

Finally I post...

2010-07-11T11:11:00.008-04:00

I apologize to everyone for my lack of blogging. Summer is so busy and relatively uneventful in terms of what I think you all would find interesting. Other than pictures I haven't had a lot to say.

In reality we do have a lot about to happen. We will be welcoming our little boy in just 19 days, my c-section is scheduled for July 30. Yikes!

In this post you will find pictures of the boys at the Fire Station in Manistee, Michigan. Blair has been doing an amazing job helping me to get Brady and Bryce out of the house. Lately my energy level has slowed way down and I haven't been able to keep up with them. He's constantly taking them places in the evenings after he gets home from work or on day trips on his days off. It has been wonderful, allowing me to get things done and recharge my battery.

Thank you Honey!

This particular day he ventured up to Manistee. We both were raised there. One of the many things they did that day was tour the Manistee Firehouse. The boys were in heaven and extremely impressed with their personal tour. So as I catch you up on everything I hope you enjoy the pictures of their day trip!

Like I mentioned, the biggest thing going on in our life right now is making room for baby. Nesting and therefore preparation started a little late this pregnancy so we've been trying to get a lot done in a short amount of time. Since Kaitlyn has just turned 11 months essentially it is going to feel like we have twins for quite awhile. (Very nervous about this!) We needed a second crib, highchair, another dresser, and even boy clothes. You see once we found out Kaitlyn was a girl we said sayonara to all of our baby boy stuff. God has quite a sense of humor and once again has showed us his plan is VERY different then ours! Placing my complete trust in Him has proposed to be quite a challenge the last 9 months but I'm getting there!

We have some amazing friends who have generously helped us out in numerous ways during our preparation for this little guy and we would like to say "thank you," it has meant so much to us and is humbling to say the least! Thank you to all of you, you know who you are!

I haven't spoke to much of my pregnancy the last month, in terms of my health and the babies health, things are going well. I am pretty confident (knock on wood) that this baby has zero plans of arriving before my scheduled c-section. Never in all my pregnancies have I gone into labor on my own. My babies like to stay inside. I am getting nervous about all that is to come though. The surgery, this will be my 4th c-section in 5 years, risks increase with each one. The baby and his health, even though we went through extensive screening for Ds I am still nervous.

Before Kaitlyn was born I had a different view on reality. Bad things happened to other families, not mine! Naive I know, but true. I think this pregnancy I am just more aware of what things could happen. Having a baby with a congenital heart defect, and a chromosomal disorder, and a Mother who developed aggressive cancer out of the blue tends to give you a jaded view, a realistic view, on what could be? It makes you appreciate the good and not take one moment of life for granted. I do miss the innocence I felt before all of this but wouldn't change any of it. I'm a different person then I was back then, a better person! And I LOVE my daughter just how she is...yes, I just typed that! I will do EVERYTHING I can to make her be the best she can be for her, I wouldn't change her, I wouldn't change Down syndrome!

So in the next weeks please say a prayer for me and my unborn baby, and our health. Please also pray for my two little boys who feel anxious about this babies arrival. They remember very clearly Kaitlyn's birth, her and I being in the hospital for a week out of town, and how unsettling that was for them. They're nervous, and a little bit excited! Please also say a prayer for my husband. Things are going to be crazy around here and a lot will fall on his shoulders. And little Kaitlyn, my poor baby, she is amazing and so laid back, I pray this is a smooth transition for her and doesn't cause her to have competitive emotions. God, calm my children and help me juggle all of their individual needs. (like I said, I am sooooo nervous)

On a lighter note,

Summer has been great!

(Other than this past week of 90+ degree heat we just had.....that made for a grumpy pregnant Mama)

We've been staying busy. Going to the beach, park, or simply playing in the back yard with the kiddie pool and sprinkler are amongst some of our favorite activities. We've gone boating with friends, I wish I had pictures of my fearless boys going tubing behind that boat. It was so much fun! We've spent time with our new friends over the 4th. Since Kaitlyn's arrival we've had many new friends enter our lives. They were definitely God sent! We also make an effort to have frequent play dates and the boys start two weeks of swimming lessons tomorrow.

So, yep, we are busy!!! But it's been...

So Much Fun!

Hopefully I will be able to do some blogging the month of August. So keep checking back. At the very least I hope to put updates and pics on facebook. You can friend me under Jenee Skocelas Ross.

Happy Summer!

Happy 4th of July (Wordless Wednesday)

2010-06-29T23:41:00.005-04:00

Summer Nights

2010-06-22T13:06:00.006-04:00

The beach, we love the beach! This is usually something the kids and I do together, Daddy's at work, not to mention Blair and the sun don't have a very good relationship. This particular Summer has been especially warm, and being VERY pregnant along with having three munchkins in tow has proposed to be quite a challenge for me. We haven't been to the beach nearly as often as I would like.

We came up with a solution...going to the beach in the evening. It works for everyone! It isn't nearly as HOT, which makes the pregnant Mommy happy. The sun is resting which is kinder to my husbands skin. And I have a lot of help from my amazing husband with the kiddos. We relax, the kids play, and Blair has the opportunity to take tons of pictures! Not to mention everyone comes home exhausted and sleeps through the night! (except me, frequent urination and heartburn, love it, only 5 more weeks to go!)

Kaitlyn loves the sand, no texture issues here!

I was wondering how long she could go without eating it!

She made it quite awhile, and then in the mouth it went...mmmm!

The boys have a blast!

We are still sweeping up sand!

Kaitlyn required 2 baths to rid the sand from her girly parts, my goodness!

Happy Summer!

All About Kaitlyn

2010-06-22T11:43:00.005-04:00

Kaitlyn has been busy meeting many BIG milestones. We are so proud of her. In a two week time frame she mastered ALL her new 6 month goals in OT and PT. Her biggest delay at the moment is speech. We constantly work on language stimulation, strengthening her mouth muscles and imitating her noises but she just doesn't have much to say. To be honest I'm not very concerned. She has made huge strides with her gross and fine motor skills. How much can the girl do at one time?! We are continuously monitoring Kaitlyn's ears. She has some fluid but continues to pass all her hearing tests. Regardless her hearing is muffled and they are worried that is contributing to her lack of speech. If the fluid stays tubes are in her future. Below are some SUPER cute pictures of Kaitlyn making funny faces. These faces are quite new and very exciting for us. She's moving her mouth and blowing bubbles which is a start in the right direction speech wise.

Some of Kaitlyn's Many Funny Faces

Kaitlyn forming the "ooooh" sound!

Her pouty lip!

So pretty!

And her biggest milestone.........

Sitting independently!!! Huge Milestone!

Her other BIG milestone.........

Getting up on all fours!

Yea Kaitlyn!

She is so proud of herself!

And to sweeten your day, a big smile from the princess!

Hope you have a GREAT day!

For The Big Guy (aka Grandpa S)

2010-06-20T20:18:00.004-04:00

Sure wish we could all be together on days like today!

You were greatly missed and thought of often!

You are a special person from the inside out!

And at the TOP of 3 little munchkins special person list!

We love you so much and appreciate all that you do!

Hope you enjoyed your day, and we can not wait until we get to see you again!

so without further ado.........

HAPPY GRANDPA'S DAY!

WE LOVE YOU BIG GUY!

~Jenee, Brady, Bryce, & Kaitlyn

Making your own honey bear cup!

2010-06-14T13:56:00.011-04:00

I've been saying for awhile that I need to order Kaitlyn a Honey Bear cup with straw. So while researching today I came across a website on how to make your own....hmmmm! I might have to try this!

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Learning to drink from a straw or hold your own cup can be really difficult for some kids.

Add to this the tendency of a lot of kids (like mine!) to chew on anything that hits their teeth and you'll be frustratingly going through straws like there's no tomorrow!

So we've come up with a solution that's simple, inexpensive, and easy to replicate. You can make a whole collection of these sippy cups and have a couple at home, at school, at grandma's house, in the car... you get the picture.

This is an easy project that will take you only minutes. Actually, once you have the items you need to make the cup, it should only take you about two seconds. Here's the simple how-to...

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What You'll Need:

•12oz honey bear container
•scissors
•nail file
•aquarium tubing (available at pet stores)

Making Your Sippy Cup

1.Clean your honey bear and remove cap with scissors.

2.After cutting off the cap the edges may be a little sharp. Use the nail file to soften these edges.

3.Cut a piece of aquarium tubing to fit into the hole in the lid. Insert tubing and you're done!

The aquarium tubing is made of medical-grade plastic and is safe for food consumption, although you may want to avoid microwaving it or sticking it in the dishwasher. It's tough, though, so your child can chew and chew as much as they want without bending or breaking the tube.
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*Warning: It was brought to my attention that the aquarium tubing is unsafe. Look into it and make your own discission. This is what I was told:

Please be careful about the aquarium tubing--it just isn't safe, especially for kids chewing on it. It has that chemical in it--BPA which is really bad for humans.
You can buy food grade tubing from Talktools--it's pretty cheap, though there is shipping cost.
----------------------------------------
The honey bear is small, isn't too heavy, and has a nice shape that contours to little hands. Ivan finds it much easier to hold on to than a traditional children's cup.

Of course the whole cup and straw combo will only last so long. After a few months of use both the straw and honey bear will begin to look worn. But it's so easy to replace! Just make sure you buy all your honey in bear containers from now on!

Please Save The Date.....

2010-06-07T18:39:00.003-04:00

Please Join Us for the 2010 Buddy Walk

Date: Sat., Sept. 25, 2010

Time: 10:30 am-Noon

Location: Millennium Park

Address: 1415 Maynard Ave SW, Grand Rapids, MI

Wow, I can't believe it is almost that time already. Last year we were new to the Buddy Walk, but this year, since we know what it’s all about, we are hoping many friends and family can join team “Kaitlyn’s Korner” and walk with us. Hopefully we can raise a little money too. It is an amazing event to support the Down syndrome community of West Michigan and honor our princess Kaitlyn. She’s had an amazing first year and is our hero. Please save the date and come out and walk with us and join our team, we're in "Kaitlyn's Korner.”

It is guaranteed to be a special time of friends, family, and community. Not to mention our newest addition will have arrived and we can always use an extra person to snuggle one of our babies or push a stroller!!! I will get more information out regarding details, T-shirts, and if you’re able, fundraising, if you’re not that is fine, we would just be honored to have you spend the morning with us!! Thanks for saving the date, Blair & Jenee!

Some Thoughts....

2010-06-04T23:33:00.006-04:00

I’ve been thinking a lot lately, making internal changes, becoming more vocal when I’m bothered by something, and when it’s all said and done I hope the end result is that I’m becoming a better person. This has been an ongoing process for me for sometime now but really has seemed to evolve around the time of the Down syndrome diagnosis for Kaitlyn.

I hope this post doesn’t turn into a huge rant. I’m not even sure of the end result of what I am going to say, I just know I have some thoughts to get off my chest, I mean, share.

A couple weeks ago a particular episode aired from the ABC TV show, What would you do? I took special interest in this specific episode because it dealt with individuals in a public setting being rude to individuals with Down syndrome, the whole time camera’s are rolling catching the reaction of others witnessing this horrible behavior. I won’t go into detail, watch the clip if you’d like, but to say the least my reaction to the show was completely devastating. It hit me on a personal level for obvious reasons, but ultimately it has me thinking about society as a whole…friends, family, strangers…everyone…and the lack of tact people have and their inability to think before they speak regarding all issues, public and private.

I’ve dealt with a few “comments” over the past weeks, months, and years. Some personal to me and others not, but all inconsiderate. Please, think before you speak. If I’ve learned anything it is that you have absolutely NO idea regarding a persons personal situation, even if you’re a close friend or family member and you think you have the right to speak, please proceed with caution, and think with your heart before you talk.

Here comes the rant:

Don’t ask a young couple over and over when they are going to start a family. Maybe they have been trying for awhile now and have been dealing with miscarriages and infertility.
Don’t question a Mother’s personal support system and question her inability to find a babysitter for her kids. For all you know they might have a child with special needs at home who they won’t leave with just anyone, and maybe, they normally do have some extra help but Grandma is battling cancer and fighting for her life at the moment and isn’t available to help out right now. (Grrrr to you doctors office receptionist)
Don’t talk about politics with just anyone. Not everyone shares your views and that’s alright. Stop being so rude and personally attacking a persons beliefs just because they don’t share the same as you. Bite your tongue. How silly is it to have politics cause division in a family. Really.
Be careful what you say about large families, maybe they wanted it that way, or maybe they trust that even though it was not their plan they trust that God’s plan is much greater then any they could have planned for themselves. (Hello, God gave me Kaitlyn, Ds and all, as well as surprise bundle #4, not my plan, but I trust His is MUCH greater, and wouldn’t change a thing)
Do not stick your nose in a couple’s very personal decisions. And do not make comments trying to sway their decisions. They are intelligent individuals with a strong marriage. They will make the right choice without you butting in pushing your views.
And last but not least, I know I have spoke of the “R” word and the pain it causes and I thank anyone who has stopped using that word. But today I ask you to stop saying all hurtful slang terms that our society has deemed acceptable. Look past the special needs community into all other “special” community’s of people (Gay/Lesbian community, the Little People community, etc.). There are slang hurtful terms for all types of people. The English language is so large, surely you can think of another word to use.

So there you have it, some of my thoughts! Stick up for people when it is the right thing to do, and bite your tongue when needed. I’m sure I’ll read this tomorrow morning and wonder what was I thinking, but tonight I post it…………

Our Vacation In Pictures

2010-06-04T13:59:00.008-04:00

This past weekend we took a vacation way North to Mackinaw City and Mackinac Island, Michigan. This has become an almost annual trip that we take over Memorial Day weekend each year. We absolutely LOVE it up there. It is beautiful, relaxing, and the boys look forward to going like most kids get excited about Disney World. Boy do we have them fooled!

My 3 boys. Pure love. In 8 weeks it will be 4 boys. Holy smokes, we really need to decide on a name!

I had a few people ask, "What do you do up there, other than visiting the island?" There is so much to do. You can spend as little or as much money as you want. It is full of history, beauty, and small town charm. The first day we spent swimming, visiting the water park attached to our hotel and ended up in the quaint shopping district in the middle of Mackinaw City. Each evening they have musicians playing in a small arena in the center of town, the boys danced, Kaitlyn played in the grass, and we had a lot of ice cream.

The picture above and below is of Fort MichiliMackinaw located in Mackinaw City. It has tons of history, demonstrations, reenactment's, and a really cool little park for the kids to play at. While visiting the blacksmith in the middle of the little village in the fort Brady was given a piece of flintstone which was used back in the day to create a spark and lite the muzzle loaders and canons. It has become his most treasured item. Such a silly little boy!

The next two pictures were taken on Mackinac Island. It is so beautiful there. We lucked out this year, the lilacs were in full bloom a couple weeks early. It smelled so good. On the island there are not any motorized vehicles, the whole island gets around by horse drawn carriage or bike. Its really neat. We spent our second day there. Last year we biked the island but not this year. We have to many munchkins to pull in a cart and they didn't have bikes with training wheels. Maybe next year!

Here are a couple pictures of the Mackinaw Bridge. I think Blair took a couple hundred pictures of the bridge. These are two of my favorites.

Below are some pictures of the little water park and pool. The kids loved it. Even the large pregnant women went swimming, somethings you just do for your kids. This was Kaitlyn's first time in a pool, she loved it. Maybe its a coincidence but this week since being back she has really enjoyed her baths even more, splashing and playing in the water.

Poor Kaitlyn was in a boy's floatation device. Sorry sweet pea, the boys were here first!

Our neighbors also ventured up north the same weekend. We met up during the Memorial Day parade. These kids have known each other since birth. It was a lot of fun!

I love this next picture! Her eyes are getting so blue!

I know I'm bias, but these are some cute little munchkins!

Bryce (above), Brady (below)

Happy Memorial Day!

A Wonderful Visit With Grandma And Grandpa

2010-05-21T13:10:00.010-04:00

Our weather continues to get nicer. Spring is here and Summer is right around the corner, they are predicting 80's for next week. I would have settled for a few weeks in the 70's first, but I'm not complaining, really! (Just really pregnant, large, and HOT)

We've had a busy few weeks. We are outside every second we get trying to enjoy life despite all the doctor's appointments, IEP's, and end of the school year activities.

Last week, finally, after 8 months we got a visit from my parents. I am so excited to announce my Mom is in remission after an aggressive fight with bone lymphoma. Praise God! It was a rough time for everyone, but she did it. She dug deep and found strength she didn't know she had and fought. I am so PROUD of her!!! Thank you to everyone for all your continued prayers. Below is a picture of Kaitlyn in a cute little dress my Mom made for her. Despite Kaitlyn's rapid growth (18lbs 11oz) she fit into the dress great!

Below are several more pictures of the week with my parents. The week flew by but we had a great overdue visit. It is crazy to think the next time we are able to see them we will have a new addition to our family (9 weeks to go).

A Day Of Fun, Few Words And A Lot Of Pictures

2010-05-19T23:08:00.003-04:00

A couple weeks ago our family spent the day in Grand Rapids. It was a crazy day of doctor's appointments for the three munchkins but we did manage to squeeze in some fun. I promised pictures and here they are. We had a lot of fun! I apologize for the lack of pictures of little Katie. She spent much of that morning sleeping in the stroller!

Wordless Wednesday

2010-05-19T14:18:00.004-04:00

This is why we tough out the nasty winters. Spring and Summer in Michigan are absolutely beautiful. Here's proof!

Down syndrome and treadmills?????

2010-05-19T00:01:00.003-04:00

Kaitlyn attended a developmental assessment clinic last week. It included appointments with an Audiologist, Speech Pathologist, Psychiatrist, Physical Therapist, all ending with the Developmental Pediatrician. I could write a lengthy post on that appointment, and I will soon. I learned a lot. But what I wanted to share is a study we were told about that day being led by Dr. Dale Ulrich at the University of Michigan. It involves babies/ toddlers with Down syndrome and treadmills. Below is a video I found while researching the study and doctor.

We received a phone call today, the developmental pediatrician called saying that Dr. Ulrich was interested in Kaitlyn being included in the study. We could have a treadmill by this weekend. I wasn't really sure what I thought of it all but as I watched the video and read about it I think we are willing to give it a try. What are your thoughts?

Some Good News!!!

2010-05-04T13:07:00.007-04:00

Yesterday we spent the WHOLE day in Grand Rapids. It was a long day but a lot of fun. We had 3 different appointments scattered over the course of the day with time left over to go to the museum and have lunch.

Our first appointment of the day was to the Cardiologist for Ms. Kaitlyn. It was a hassle free quick visit. No echo cardiogram this time. The doctor said she was doing great and we didn't have to go back for a YEAR! I have to tell you how crazy this all is. Her surgery was only 5 short months ago. Those first months of her life she was such a sick baby, and here we are such a short time later, her heart is repaired and she is as healthy and active as ever! It's truly amazing, seriously there are times when I think back and can't believe that was our "crazy" life this past fall!

With the rest of the morning free we headed to the Public Museum. I had never been to this museum we always went to the Children's museum. We had a blast. It was 3 stories high and had so much for the kids to see and do. I think the Bug exhibit and the Planetarium were the biggest hit among the boys. I have a lot of pictures to share and I'll do it soon on a separate post.

After the museum we headed to lunch, we were all starving, our morning had started very early. After lunch we headed to the Pediatric Opthamologist for a follow up appointment for Brady and Kaitlyn's first eye appointment. Both of the appointments went really well. We brace ourselves each time we head to the eye doctor. Brady has been wearing glasses since he was 2 1/2. It is very common for children with glasses to get their prescriptions changed often, its been every 6 months for Brady. Which gets quite expensive. I am happy to report that Brady didn't need new glasses this time. Yay!!!

Next up was Kaitlyn. In the last 6 weeks or so I had been noticing Kaitlyn's eyes crossing. We aren't new to estropia, this too is what Brady has, but I was so sad Kaitlyn was getting it so young. All I could think is how in the world do you keep glasses on a 9 month old baby face. (She's 9 months old today, Happy 9 months baby girl!) And rubber glasses, really, very practical, but not cute! No I'm not that vein, but on a baby her face would be lost behind those glasses, and having Down syndrome, it is clear she already has a disability, and I will spend my whole life trying to get people to see her and not the stereotype. Glasses would be just one more thing that people would see instead of the beautiful baby behind the frames.

So what did we find out...

Kaitlyn is somewhat farsighted and she too has intermittent estropia (crossing of the eyes some of the time). We can expect glasses in her future. How soon? We are not sure! He wants us to go back in 3 months.

This was the doctors explanation...

Due to Kaitlyn having Down syndrome, therefore low muscle tone, and having had heart surgery, developmentally she is somewhere in the 4-6 month old range verses her actual age of 9 months. So when deciding the plan of action he took that into account. It is "normal" for a 4-6 month old baby to still be working on developing the eye muscles that stabilize the eyes. So for now we wait. When we go back he is hoping to see some improvement, if not we will talk about options (glasses or patching of the eyes).

So for us it was a great day! We spent time as a family. Medically speaking the kids are doing great, and the day didn't cost us a small fortune! Awesome day!

Hope you enjoyed the pictures I snuck in the post. I will never miss an opportunity to share my beautiful kids with all the friends and family who come to read and SEE them.

One more quick update. My parents are coming this weekend for the week. My Mom is officially in remission and can't wait to get here and hug her grand babies. We are all so excited. She hasn't seen Kaitlyn since she was 5 weeks old. It will be a happy "extra special" Mother's Day for sure!

Attention Moms (and all busy Ladies)

2010-04-28T13:41:00.005-04:00

I am looking for ways to declutter my mind and house. Simple easy things to make my life easier that doesn't take too much time away from the kiddos. What do you do to make your day easier, and reduce stress? I want your ideas! Hopefully I can get enough and start a weekly blog post. Nothing is too small or silly. I need help as do many other Moms.

Let's hear it, I can tell you were here, everyone should have at least one tip, so share it!

I'll start by sharing one:

*Buy frozen chicken breast in bulk, when you get home, cook all of it, freeze portioned bags and it's ready to help you make a fast dinner any night of the week. (Thanks Sarah for the tip, pretty sure it was one of your ideas a while back)

Here is some feedback I got from Facebook (thanks for sharing ladies):

* I can't declutter my mind until I declutter my house. I've not figured out how to do it either.... looking forward to some suggestions.

* OK I don't really have an wisdom, but I do have 4 children who love to bug mommy when she is in the kitchen. So, I started buying pre-made pizza crusts and all kinds of crazy toppings. They each sit at the table and get to put exactly what they want on it, whether it be marshmallow creme and chocolate chips or something an actual person could eat. LOL...makes dinner time sooo much less stressful for me.

* I have one, but you have to sacrifice your desire for getting your house all clean on one day. I function better in this season of life by doing only minimal chores a day. First I start by doing one or 2 loads of laundry a day. It is much easier for me to actually get it back into the drawers in a record 3 days! Mondays I mop the kitchen, ...Tuesdays I wipe down the bathroom, Wednesday I catch up on laundry (mostly folding and putting away), Thursday I dust (once a month) and vacuum (every week), and Friday I do something that's "deep" like baseboards.

As far as cooking, a lot of times if I am making a casserole or spaghetti sauce for dinner, I double it and put the second portion in the freezer. Saves money on take-out for when there is a sick kid or exhausted mommy in the house - which is often :). If you have to take it directly from the freezer, you just double the cooking time for a casserole and you can defrost sauces in the microwave in about 30 minutes.

* 1) For cleaning the magic eraser is awesome (crayon on walls scuff marks & even dog drool on my couch)
2) 15 min before dinner when the kids are bothering you complaining they are hungry put out some veggies if they really are hungry they eat it. Even if they spoil dinner, at least they had veggies.

For The Love Of Photography And My Kiddos

2010-04-25T23:48:00.006-04:00

Awesome Video

2010-04-20T21:38:00.004-04:00

This is a great video clip from the TV show The Dr's. It's heartwarming, educational for those just learning about Down syndrome, and I think it really shows how great life REALLY is with a family member with Down syndrome. Watch the video and be inspired, and share the video and help break the stereotype. They are more alike than different!

You can pause the music at the bottom

Memories Made

2010-04-18T13:28:00.003-04:00

We ventured up to Manistee yesterday. We had a day planned of family, friends, and our favorite pizza shop. One of the main stops on our day trip was to visit my 87 year old Grandma. Life has prevented us from getting up there lately. The visit with my Grandma was long overdue. The boys love going to visit Great Grandma, she has many special treasures, and Brady thinks it's neat she lives in a hotel (its an apartment(smile)).

We lived close to my Grandparents growing up, I spent much time at my Grandma's house. It is heart warming to know that my kids are getting to know this amazing lady.

Kaitlyn was in a great mood all day. She was so sleep deprived, but kept smiling and melting hearts all day long.

I think what I enjoy most about the time I spend with my Grandma are the stories she shares. Her memory is amazing. She brought out a box full of photos, it was full of pictures from the last 80+ years. Literally there was a picture of her as an infant with her father (Pop), and one of her meeting Bryce shortly after he was born in 2006. I truly believe that more memories were made yesterday and that these pictures on this post today will be in my photo box to share with my grandkids decades down the road. HOW COOL!

It was a beautiful day! I love sharing my kids, and I love making memories!

A New Blog

2010-04-14T09:00:00.004-04:00

I am asking all my friends to please go and check out this new blog. They are a family who too has just been blessed with a little bundle with Down syndrome. Let's show her some LUV!

If People With Down Syndrome Ruled The World

2010-04-12T12:13:00.005-04:00

I am reposting this from Smiles 4 Downs, check out her site, this is an article she posted today. It's great. Take the time to read it and pass it on. I loved it!

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This is probably one of the best articles that I have read by Dr. Dennis McGuire. It is humorous and very touching. Please share this story with your friends and family. Great view on the Down Syndrome community as a whole. This is a long one, but well worth the read….

Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.

If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

Development of the
Adult Down Syndrome Center

Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.

Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.

We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters.

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.

Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.

All people would be encouraged to develop and use their gifts for helping others.

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.

People would be refreshingly honest and genuine.

People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”

We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.

However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and …can they dance! (and by the way, who needs a date… “Just dance”).

Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?

People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.

It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)

Order and Structure would rule

We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking…“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.

Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.

What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast … they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.

So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:

* Schedules and calendars would be followed.

* Trains & planes would run on time.

* Lunch would be at 12:00. Dinner at 6:00.

* Work time would be work time.

* Vacation would be vacation.

At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.

But there is much, much more:

* People would be expected to keep their promises.

* Last minute changes would be strongly discouraged (if not considered rude and offensive).

* Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).

* Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).

* The “grunge look” would be out, way out.

* “Prep” (but not pretentious) would be very big.

In the world of Down Syndrome, there would be a great deal more tolerance for:

* Repeating the same phrase or question

* Use of the terms “fun” and “cleaning” in the same sentence

* Closing doors or cabinets that are left ajar (even in someone else’s house)

* Arranging things until they are “Just so.”

Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.

The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.

At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.

Therefore, in the world of Down Syndrome:

* Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.

* Here and now would command a great deal more respect than it currently does.

* Stopping to smell the roses would not be just a cliché.

* Work would be revered, no matter what kind, from doing dishes to rocket science.

We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.

Therefore, if people with Down syndrome ran the world:

* Speed would be far less important than doing the job right.

* Work would be everyone’s right, not a privilege.

However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.

All instruction would include pictures to aid visual learners.

Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).

If people with Down syndrome ran the world:

* School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.

* Counselors would be able to use visual mediums to help solve problems.

What About News?

If people with Down syndrome ran the world:

* Weather would be the only essential news item

* News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?

What About Bad News?

If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”

What About “Behaviors”…

…and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?

We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.

We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.

Therefore if people with DS ran the world:

* Anger would only be allowed in special sound proof rooms.

* Trained negotiators would be available to everyone to help deal with any conflicts.

* The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”

What About Self Expression?

* Art and music appreciation would be BIG.

* People would have time to work on paintings and other art projects.

* Acting and theatrical arts would be encouraged for all.

Dancing

* You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight … absolutely.”

* The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.

* People would be encouraged to get married several times to have more weddings for more music and dancing.

* Richard Simmons and John Travolta would be national heroes.

Music

* Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)

* Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)

* John Travolta would be the biggest star.

Television

* Classic TV hits would be very BIG and take up at least half the TV schedules.

* “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.

* Wrestling would be very Big.

* “Life Goes On” would also be very Big and replayed regularly.

Movies

* There would be fewer movies, but they would be replayed over and over.

* Movie theaters would allow people to talk out loud to tell what happens next.

No Secret Agents

* People would not hurt the feelings of others and they would also not lie or keep secrets.

* Therefore there probably would be no secret service agents, spies, or terrorists.

The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.