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.

She Did it!

We are so proud of Kailey as she stood up for the first time in the center of the room all by herself!  I often wondered how I would feel when Kailey did things for the first time (when it happened more quickly) compared to Colin and I can tell you that as a Mommy, I am equally proud of both of my kids for their accomplishments.  I know that whether you have a child with special needs or not, all of your children do things at their own paces, on their own time frames, and when they are ready.  

...kailey is definitely ready to be on the move!

I looked over and checked on her because she was balancing on one knee as she held onto these books.

However, when I looked back, she started pushing herself up.  I LOVE the tongue hanging out here!

I can tell you that when she saw our reaction, she was SO PROUD of herself.  Look at that smile!

What a big girl!

 

And then down again to start it all over again...

And then the little stinker climbed up on her chair to get on the ottoman...

...and take a break!

PLEASE don't pay attention to my excited squeeky voice in this video.  I was really excited!

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Still Here...

I regret to admit that I am so behind on updating the blog and blog reading.  In fact, I have never been this before behind and it's killing me.  I hope to get myself updated this weekend as I really feel like I miss you all!

There has been a LOT going on here and it's been quite challenging to keep up with it all.  This post is mostly to devoted to things that are just popping into my head so it will probably be quite random.  

We are in the midst of transitioning Colin to preschool, which sounds so crazy to admit it.  We have had two meetings just to talk about the process and tour Colin's new school, one meeting for a developmental evaluation and then one coming up for a speech and physical evaluation.  After that we will meet with the CST team about creating his IEP for the school year.  We have unofficially discussed what our true wishes are and I feel like they have been pretty accommodating to the main issues we are trying to address.  I had a hard time with the evaluation because it brought to light SO MANY things that Colin is unable to do at this time.  However, those kinds of mopey days are short-lived as I know that we have so much to look forward to when Colin does start school.  

We are really sad that Colin's time at his current school will be coming to an end as we will be unable to transport him there for the afternoon.  In Colin's current class, he has a friend whose mom is a teacher at the school he will be going to and when we ran into her today, Colin just melted into her arms.  It was love at first site for me so hoping that just maybe our luck will be that Colin can be put into her class.  I can just see things happening there...

We are still having a lot of difficulties when it comes to Colin's eating and are becoming more and more concerned as the 6 things that Colin was eating are now dwindling into a list of 3.  I am hoping that as we exhaust all of our options, the ENT doctor will be able to potentially draw a connection to his tonsils.  If you look at the back of his throat, Colin's tonsils are currently touching each other.  I can't imagine that feels very good when eating.  However, Colin has started a new strange trend where he is asking for a pancake at bedtime.  We have been appeasing because we so desperately want him eating more, but I don't like that timing either.  He still pushes them away and we have to feed them to him, but we are just happy at times he is eating SOMETHING.

Last night was an awful night as Chris was traveling through the night with the basketball team to get home and I worked until 11:30 trying to get school work done.  I hadn't been asleep for more than an hour when Kailey woke up crying.  I tried ignoring it for a bit, but when i went into her room, she was laying in a PILE of chunky vomit.  With Chris being gone, I had to get her changed, bathed, bed stripped and soothed by myself (very difficult at 2am!).  She seemed pretty upset so I spent the rest of the night trying to get her comfortable and asleep.  Chris finally walked in the door at 5am-ish, I slept for about 20 minutes, and then my alarm went off to get up and get ready for the day.  Fun times...

Amazingly, she was fine all day so I'm not sure what that was about...

Otherwise, we are just trucking along here.  We are anxiously awaiting for a time when we can all just relax together which seems so far away right now.  We have a 1st birthday less than 2 weeks away!

2012 Special Olympics of NJ Polar Bear Plunge

Sometimes we really don't have the words to truly express how we feel in any given moment.  I have sat here trying to eloquently say the words "thank you", but I honestly don't know how to do that.  On Saturday, we participated in our 3rd Special Olympics of NJ Polar Bear Plunge and it was BY FAR, our biggest and best year yet.  Team CAT Crew (created in honor of our beautiful little boy, Colin Allan Tobin) had 81 official members and prior to the plunge, had raised just over $45,000.  I know that some of our members brought additional donations with them to the plunge, so our amount should continue to raise over the next month or so.  

This was the first year that we could honestly say that it was cold.  Although the air temperature was about 40 degrees, it was incredibly windy and made for some uncomfortable conditions.  Colin and Kailey spent the morning with us, but due to the conditions, we ended up sending them home with my mom.  Kailey was so miserable and although I think Colin would have made it, the crowd was very challenging to deal with, especially considering we would have been bringing a wagon onto the beach.  It. was. cold.  However, when you are doing it for a specific reason, anything is tolerable.  

Because of so many brave individuals plunging into the Atlantic on a very windy February day, as a united group, we helped the Special Olympics of NJ to raise the most amount of money yet with around $1.4 million dollars.  Million!  

Below are many pictures from the day thanks to our Team Captain Jorie Gallagher (and great friend of mine)...

Click here to view these pictures larger

Almost a Year

Our pretty little girl is just shy of a year now and sometimes I can't believe how fast time has flown.  I feel like just yesterday I was patiently waiting for her to arrive.  She has filled our home with so much cuteness,  laughter, giggles...and sass and I love it!  She has her own distinct personality and she is VERY independent.    Sometimes it makes me a little sad that she is not a snuggler like Colin, but lately in the right moment, she will let her body just give in to yours.  Those moments are the best.  

It has been so interesting to watch a child whose development is so different than Colin's.  Things do seem to come easier to her, but they are also very different kids when it comes to how they do things.  We are so surprised when we see her do things that we haven't spent a lot of time on, like putting rings on the stand...

She is very proud of herself when she is up and about, but is not quite ready to "let go" and be on her own.  I'm not sure I am ready for that just yet!

Although both of my children are very different, the worry is the still the same.  Down syndrome or not, I have my own worries when it comes to Kailey and she has scared me in ways that Colin has not because she is not afraid to try so many things.

More to come in just under a month! :)