2012 World Down Syndrome Day

March 21st marks a very special day to celebrate those living with Down Syndrome across the world.  We are spending this day spreading awareness that those living with Down Syndrome are our children, brothers, sisters, grandchildren, nieces, nephews, aunts, uncles, friends, neighbors and loved ones and are just as special as you and I.  

Instead of having 46 chromosomes, those with Down Syndrome have one extra one at their 21st chromosome.  Even though they have one extra, it does not define who they are.  I blog because my son Colin is a beautiful, loving, and special little boy and I can assure you that his extra chromosome does not define him.  I blog because I want people to know that although we may face some extra challenges, Colin is such a typical little 2 (almost 3) year old toddler...he is a picky eater, he tests his limits, he doesn't give up easily, he makes us laugh, he kisses his little sister, he works hard, and he is always learning.

Colin has Down Syndrome and we are so proud of him.  We are proud to stand up today and tell the world that our loved ones are special individuals.

This video is beautiful...If I could tell myself anything before Colin was born, I would tell myself it would be better than I ever expected....

First Trip to the Dentist

Today was our first trip to the dentist for Colin and I will admit that I was extremely nervous about this one.  Colin is currently getting several teeth, and during this process every time, his behavior isn't the greatest and he has been known to bite here and there.  Not that I am making excuses for either of these, but it is definitely a direct relationship between his discomfort and how he behaves at times.  I was particularly weary of a dentist trying to put his hands in Colin's mouth...

When we got there, Colin took a moment to take a rest and hang out in the chair...

...but then I think he realized where he was and tried to get the heck out of there.  

However, when we got called to the back, Colin was his sweet self saying hi to everyone we passed and LOVING the large fish tank we passed on the way.  This makes me even more excited for our upcoming trip to the aquarium in Baltimore over my spring break.  

The hygienist did her routine work and asked a lot of questions about his medical health history.  She attempted to clean his teeth, but Colin wasn't having it so we just waited for the doctor since he had to do his evaluation anyway.

 Despite the fact Colin was not happy during the eval, he was pretty good considering he IS 2.  I think that he did try to bite the doctor once, but the doctor saw what he needed and said that everything looked good and Colin did not have any cavities (yay!).  I was very embarrassed though because JUST before we went back to our small space, Colin made a very stinky mess in his diaper and of course I did not have the diaper bag with me.  He stunk up the room!

All in all, I'm glad we got that one out of the way and glad that although the visit wasn't great, it wasn't as bad as I expected.

The New Challenge

As if you could just flip a switch, we have been fighting a new battle since Sunday night...the bed time battle.  It used to not matter if we put Colin to bed at 7 or 8pm, he would crawl right down to his pillow when we put him in bed, say good night and that would be it.  

Well, that has seemed to change since Sunday.  He has been getting out of bed when we put him in, opening his door (which was SO great the first time he did it, but now we could kick ourselves for being excited), and heading back to us in the family room.  We aren't giving in, and we have literally put him back in bed 50+ times over the past 2 nights.  It's torture.  

Tonight, Chris refused to give in and held the door so he couldn't get out.  THIS is what we finally got, but not where we wanted him to be.

Even better, Kailey screams bloody murder until she finally gives in (which is 30+ minutes) for the past 2  nights as well.

This is a battle we did not want to be fighting...

Happy 1st Birthday Kailey Part II

Today is Kailey's actual first birthday and I am so excited because originally I was supposed to have tutoring after school until 5:30, but it was cut short after only 30 minutes.  We decided to all celebrate her day by walking up to our local pizza place (which is also a BYOB...part of the fun!).  The weather is BEAUTIFUL right now so it was a nice night to get out and walk through the neighborhood.  

Kailey was all decked out in her 1st birthday gear and had some of her very own pizza.

Aunt Kimmy came from work to join us and we had a lot of fun!

Colin was giving his sister some birthday love...

 

But then....we got our cue to leave from the kids that they had had enough...

, 

So, we got home and gave Kailey her birthday gift...

She was very curious about what was in the bag, and made sure to read her whole card...

We are not so sure how she feels about her cabbage patch doll yet...

...since all she did was push her away onto the floor.

...and at more attempts to get a picture with her new doll, she just tried to run away.

How do you love the new boots?!  I am so in love!

Happy Birthday to our sweetness....we love you so much Kailey!

We hope you have had a fun filled special weekend and birthday!

Happy 1st Birthday Kailey!

Happy birthday to our BEAUTIFUL little girl Kailey!  It is amazing how quickly time flies by when you are having fun!  

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Kailey  has brought so much to our lives and we are ever so grateful that she is here with us.  She is so independent and loves to figure things out and explore on her own.  It is so much fun to watch her discover new things as she is curious about everything.  

One thing we learned really quickly with Kailey is that she will eat anything and everything.  There isn't anything she won't try however, if she really doesn't want or like something, she will let you know!  

Kailey is just starting to stand herself up and looks like she is going to be walking very soon.  She is climbing up on some of the furniture and doesn't seem to be afraid of anything!  On most days, she can occupy herself by playing with many different toys, although doesn't seem to have a preference yet.  

She has the sweetest little laugh and at times, it makes me teary eyed just because it is so cute and makes me so happy.  

She absolutely adores her brother, even though he isn't always the nicest to her (everyone's learning though).  She likes to be near him and most especially loves when he gives her kisses and hugs.  As time has gone by, they seem to be playing better and better with each other and I look forward to seeing that relationship flourish.  

She has had a really tough time with teething, but both of my kids have.  She really struggles on the rough days and has a really hard time because then doesn't snuggle very well.  She was never our snuggler until recently it has been becoming better.

One year ago when she was entering our world, I cried happy tears when the doctor told us it was a girl.  I had this feeling deep down but the announcement from the doctor was that much better.  Kailey's birth experience was much more peaceful than Colin's, and we really appreciated that.  

Yesterday we celebrated one happy year with our beautiful little girl.  We are so thankful to our family and friends who truly made the day a special one.  

Kailey...we love you with all of our hearts.  Thank you for bringing so much love and happiness into our lives with the sass of a little girl.  Thank you for a fantastic year.  We love you!

Spread the Word

Today is national activation day to "Spread the Word to End the Word".  Many people are standing up today to say that it is NOT ok to use the word retarded in any way.  I have a child with a developmental disability and by using the word retarded, you are putting him down in a derogatory way.

I ask that YOU make a stand today.  Stand up and say that it is NOT ok to use the word retard or retarded.  Stand up and say that YOU will not use that word.  Stand up and tell your friends, your neighbors, coworkers and family that it is NOT ok to use this word...

I thank you.

Please take a minute to watch this beautiful video... For more information, please visit http://www.r-word.org/.

Strike One

Today was a big day for us (or so I thought) when it came to getting answers for Colin.  Chris and Colin headed over to see Dr. Uma regarding this chronic cough and congestion that Colin has been fighting for almost a month now.  I was becoming more and more concerned because I felt as though the cough sounded like a wheeze in the mornings, however, Dr. Uma said it's all upper respiratory and probably related to post nasal drip and mucus.  Colin generally takes an allergy medicine to control this, but she gave a prescription medication that is a bit stronger.  Only problem is, we are running out of food to put the medication in since Colin ISN'T EATING!

Later today, we had an appointment with the ENT doctor (who we love because he is so great at explaining things to us).  

We haven't seen him in a year and I was so desperate for an answer or solution to the feeding problems that I was riding on the fact he was going to tell us that Yes! the tonsils were going to come out and Colin would eat normal again!  

We explained the issues and how we felt that Colin was doing so great with the feeding until he had strep in December.  He agreed that Colin's tonsils are enlarged and then asked if he snores or sounds like he stops breathing (no).  He asked if he gags when eating (no).  He asked if he refuses to eat or gags/throws up when eating solids (well, no, but doesn't EAT solids).  He also had some other questions related to these.  

So, the answer is not the tonsils.  He does think that since his tonsils are large, they will ultimately come out but he doesn't like to do it this young without symptoms that indicate the removal.  

Obviously I do not want to do a surgery now if it is not indicated, but I was really hoping that this would be the solution.  My heart sunk when I learned this was not the answer I was looking for however, this doctor is so great at explaining that I was confident this wasn't the right answer either.

Next stop....gastroenterologist.  Great.