Love for Colin

Shake that Booty!

2012-02-02T22:16:00.001-05:00

Today is Chris' birthday and unfortunately, he had to work all day long including a basketball game until late. To help him celebrate, we went to his game to cheer him on. Colin sure gave Chris a great birthday present...a little song and a dance prior to the game.

Let's just say, this kid's got mooooooves.

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Happy Birthday Daddy! We love you so much!

A Day in the Life

2012-01-30T20:02:00.001-05:00

Things around here have been pretty crazy lately. I feel like we run from one thing to the next and one doctor to the next to check on this and that. These kids sure keep us busy!

Despite our wonderful positive progress in the area of walking, we are a bit discouraged when it comes to other areas with Colin. On our roller coaster ride of feeding challenges, we are currently chugging uphill very slowly again. For the past week, Colin is basically refusing breakfast (seems to only eat if we force it by spoon feeding him) and the ever favorite pancake is ultimately being refused (although tonight he did ok if we weren't paying attention to him).

As always, these feeding struggles could be related to stubbornness, stomach issues, or generally not feeling well (he has been very mucousy lately). It's just tough when you feel like you make progress and then start heading in the opposite direction again. I was so excited the other day when Colin's teacher told me he ate Jello at school and LOVED it. I went out, bought Jello, and when I tried to give it to him, you would have thought he was strapped onto a chair being tortured. He wanted NOTHING to do with it. So, we trudge along.

My other thing that I will admit has made me feel a bit bummy lately has to do with Colin's communication struggles. Don't get me wrong, I am extremely happy with how far he has come, and he is "talking" so much lately. However, I do feel we face some behavior issues because he can't adequately communicate his feelings, needs, wants, etc. and frustration (on both sides) because we don't understand what he is trying to say to us. When we are in our bubble at home, we see so much progress in this area, but then we spend time with other children Colin's age, or see him interact at school, and realize just how far behind he is. In the grand scheme of things, this delay does not bother me in the sense of comparing, it's just that I want HIM to be able to communicate effectively for his benefit. This bumminess doesn't shadow the positiveness (don't you worry about that!) but you know, it's always hard to see things your child isn't doing and worry, want, etc.

Now Kailey on the other hand, whew, is she a crazy girl getting into EVERYTHING! She sure is adventuresome and knows EXACTLY when she is doing something she isn't supposed to. She just looks at you with that sweet as pie look and continues right along with what she is doing. Today we made our first visit to a pediatric dentist to check on the "snaggle" that she created last week.

Long story short, FORTUNATELY, the tooth is not fractured near the bone so that is not the cause of the looseness. However, the x-ray (which she was SO cooperative for...so proud of her!) showed that the tooth is pretty far out of it's original location, so he can't guarantee that it won't eventually die and fall out sooner than it's supposed to. In the meantime, we just continue to check on the tooth with him and make sure everything seems Ok. Thankfully there is no pulling of the tooth anytime soon (unless something warrants it). Silly girl.

Beautiful

2012-01-29T19:44:00.003-05:00

I have been waiting a REALLY long time to see this...

It makes me so happy.

Prayers for Precious Piper

2012-01-26T05:00:00.000-05:00

Hi guys! Our friend Piper is having surgery today to fix her hole in her heart. Please say a prayer for her and her Mommy and Daddy that all goes well and she will be back to her new improved self very quickly. I KNOW that her Mommy and Daddy would REALLY appreciate the support, so if you don't mind, could you stop on by their blog and let them you know you are thinking about them? Thanks!!

We love you Piper!!

On Being a Parent

2012-01-25T19:43:00.000-05:00

Sometimes it really doesn't matter whether or not you are the parent of a child with special needs or a "typically" developing child, you will worry all the same.

Take, for instance, on Monday when we realized that Kailey's tooth did not look right. Upon closer inspection, we realized that she must have done something while she was standing up in the crib on Sunday night before falling asleep. You know, when we were letting her "cry it out" to finally get to sleep. In our defense, she did not cry any differently when it must have happened (we were listening the whole time on the monitor AND went in there a few times to lay her down and check on her). After we realized that her tooth did not look right, Chris went into her room and found blood on the toy that WAS hanging in her crib and on the sheet. Fortunately, it wasn't a lot (we check on the kids multiple times before we go to bed at night and never really noticed any). Upon closer inspection, we realized her tooth was not in the correct spot! Ugh! So, after Chris drove me to the doctor (I had strep and tonsilitis again) and we waited an hour (way to long), then waited at the pharmacy for 30 minutes, he dropped me off at home, went and picked up Kailey, waited an hour at the pedi's office and then were told that something needed to be done with the tooth.

So, I met Chris at the ER (wasn't going to make him do that alone) expecting that the tooth was going to need to be pulled. However, the pedi there said that it wasn't loose enough to pull it out for safety reasons (choking at night) and that it * should * tighten back up again until it falls out again when it's supposed to. However, we were given a prophylactic antibiotic to make sure she doesn't get an infection and we are constantly checking on it. We were upset at first thinking of ways we could have prevented it, but do you know what? How CAN YOU prevent a little typical girl who is standing up at EVERYTHING, even if it seems impossible including in the crib? Are we supposed to strap in her in a lying position in the crib at night? No...but the worry is endless!

Our pretty girl before....

...Our pretty girl after, but with a huge chicklet out of place...

...and the nasty looking gum shot. If you look closer, you can see how far it moved from the midline.

Not only do we worry about right now, but the future adult tooth (no one would ever do x-rays to look at that now at this age, so we just have to sit and wait).

I guess worry as a parent is ENDLESS. I have a feeling that with these kids, this is only the beginning...

Each and Every Moment

2012-01-22T20:27:00.002-05:00

On Saturday, January 21st, Colin's Aunt Beth organized our annual Flapjack Fundraiser at Applebees to raise money for team CAT Crew's participation in the Special Olympics of NJ Polar Bear Plunge. Although the weather deterred some people from coming out (understandably so), it was a great success as always. While I was there, I was reminded of how fortunate I am to have been forced to slow my life down and enjoy every moment.

Lots of advice that one constantly receives as a parent is to "enjoy every moment because it goes by so fast". I DO agree that time flies by, but this is not something Chris and I need to be reminded of. One gift we have been given from Colin IS to slow down and look at and enjoy every moment because that is how so many things in our house are broken down. Instead of one day Colin sitting up, we pushed and helped and strengthened in order to see every piece of the puzzle and have him sit up. Instead of watching Colin pick himself up one day in order to crawl around the room, we pushed and helped and strengthened in order to see him learn each individual step in order to learn how to crawl. And although we have struggled when it comes to feeding making time feel like it was stagnant, we can still look back and see how far we have come.

...and although we have been waiting a solid year and 9 months with the hopes that Colin would one day start walking around the room, we have witnessed every.single.step to ultimately get where we are today.

So yes, we DO enjoy every moment.

On Friday when I got to school, I was already flustered from my school day and because Colin was being stubborn and wouldn't walk and hold my hand to leave school (carrying both of them at the same time is become increasingly challenging). I carried him until we got away from the areas he likes to crawl to and then put him down and told him he needed to hold my hand and walk. However, to my surprise, Colin let go of my hand, and walked down the short hallway, waved good-bye to his friends in the office, blew them a kiss, and continued to walk out the double doors to the sidewalk outside. I cried. It was ONE moment in my life that I was in and wasn't letting pass me by.

When we first created our team CAT Crew for the Special Olympics, I was so happy that our money raised was going to such a great cause. However, it was that more meaningful this year because Colin participates in the programs and directly benefits from this money raised.

...that first year at the breakfast, he was 9 months old and sat in his high chair like he was king of the world.

...the next year he was 1 and 9 months, and crawled around showing off his newly mobile self.

...and this year? He just decided that he was going to GO and walked LAPS around the entire restaurant chasing after his friend Kaia.

Maybe time moves quickly, and maybe every single moment is not the most enjoyable, but we don't let any of it go by unnoticed.

We are SO PROUD of our little boy and LOVE hearing the little pitter patter of his steps around the house. We have been waiting a LONG time to say that...

The Anatomy of a Sibling Shot

2012-01-19T20:00:00.004-05:00

Every once in awhile, a situation presents itself where I need to run and get the camera. Tonight, it happened when Colin sat in the chair and asked for Kailey to join him. I said "wait! don't move!" and ran and got the camera which surprisingly, they stayed. However, I was able to snap one quick picture, and then they were done...

Nice smiles and Colin even put his arm around Kailey...

Colin is trying to make an escape...

Hmmm, what's this string on my arm?

I know what I can do, I can put it in Kailey's hair. She won't have a clue!

Oh darn, it slipped when she moved.

Let me just fix that and put it back on top of her head...

Mommy, he's bothering me. Get me out of this chair!

Well, if she's leaving, I'm outta here!

Anticipation Nervousness

2012-01-18T20:18:00.001-05:00

When Colin was born, Chris and I were so nervous about everything because we had such a fear of the unknown. We had no idea where to start or what to do because it was all so overwhelming to us. We quickly learned about Early Intervention and as soon as the day passed it was confirmed he had Down Syndrome (our lowest of lows), we were on the phone scheduling the initial consultation for an evaluation. Since Colin was only 2 weeks old, the woman I spoke to was shocked that we were already calling.

Just shy of Colin's 4 week birthday, a team came out to evaluate Colin and we were so happy because he was so alert and active while they were at our house. Since it was so new to us, we felt as though we had to "show off" what Colin could do. We were so happy that he was lifting his head and showing them that he could roll over already. Things started to feel a little bit better because we had a place to start, suggestions on what we could work on, and a "plan" for where we were going to go.

When we started with physical therapy and developmental intervention, we felt like we had to do every.single.thing. the therapists suggested. We were crazed with tummy time, clapping blocks, and the exercise ball. In fact, we would have babysitters and as part of the note for the day we would tell them what exercises to work on! But, we had a plan and it was relatively easy to follow. As time has gone by, we have most obviously faced our challenges, but overall things have gotten easier. We know when it's time to schedule check-ups, we don't fear evaluations because our team is made of our friends, and we just follow the plan. Most importantly, we just live life and take things one day at a time.

However, Colin is turning 3 in April, which means we have started the process of registering him for school so that he can start at that time. The butterflies and anxiety and nervousness has started back up again because we are starting a new chapter and are facing so much unknown. After I dropped the registration packet off the other day, I received the phone call about setting up the meeting to basically tell us that he is going to be evaluated. I was given a date with a time that fell midday that was relatively short notice. I explained that I work full time and while I fully anticipate to have to take some time for the meetings, I really can't afford to take a full day at this time and could they schedule it early morning or late afternoon. I received a follow up call on Tuesday for today (again, way to short notice) and I explained again our situation. She said she would follow up and I haven't heard back again.

I just felt like I don't want to do this. I don't want to have to do this. We haven't even scheduled the first meeting and I am anxious. I think back to those first few weeks again and know that once we get into this, start going to the meetings, and he finally gets to school, we will be Ok because it will become our new normal.

...it's just the anticipation that makes me nervous. I feel like we are starting all over again from the beginning. I just felt like it was something I had to get off my chest because as always, we will be fine and will figure out what we need to do and will find the best fit for Colin.

Most especially, I can't believe my baby is approaching 3!

Trouble-makers

2012-01-17T21:45:00.001-05:00

Colin gets scolded repeatedly for standing up and trying to touch the TV (hence why we are mounting it very soon!). However, now little missy decided to join in so they are both getting scolded for it.

Not going to lie though, I think it's pretty cute...

"Choo Choo" Standing

2012-01-16T21:21:00.002-05:00

This weekend, Colin has been standing and walking more and more from different sources of motivation. Tonight, it was Choo Choo Soul!

...and Kailey is doing more and more standing on her own too!

...and just to make you giggle. This was Colin today after he took my headband from running and sat in Kailey's chair with it on. It was HYSTERICAL.

Stubborness

2012-01-15T21:25:00.003-05:00

Stubbornness is a trait that Colin has been exhibiting lately when it comes to walking and eating. I know that parenting has a lot of ebbs and flows, but coming off of the high of having Colin just start walking and then eating independently has made it pretty frustrating. We think we are seeing some regression because of the attention that Kailey gets when it comes to getting picked up to get around at times and then needed to be fed with a spoon still so we try and utilize how far Kailey has come with picking food up and standing to motivate Colin.

However, we do hear some positive things from Colin's teachers that he stands a lot at school and is still eating independently there, so we are happy with that. It's interesting how it goes though because today Colin did so well at lunch while we were out with friends (ate every single drop all by himself), but then wanted nothing to do with eating his dinner independently.

One way that we are trying to get Colin to walk more is by motivating him through "games". The other day I started trying to get him to walk by singing a walking song and marching while swinging our arms. He loved it and has really gotten him to walk more around the house. What's more exciting is that he will ask to do the "walking game" and initiates it himself. However, he was NOT happy when he turned around in this video and realized I was taping him and not participating the way he wanted me to...

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Given how far we have come with the feeding and walking, these are only minor setbacks in our journey, but it can be frustrating at times. I think the frustration lies more in the anticipation of the excitement in all of these great things that we are ever so patiently waiting for.

One other thing we are concerned with is Colin's eye sight/eyes. We have done all of the regular checkups since Colin was only a few months old and he has always done really well without any concern for his vision or muscles. However, in the past few weeks, his eyes have been crossing a lot and it looks as though he is having trouble focusing on one thing. At times, it almost seems as though Colin doesn't know where to look. We have noticed that it seems as though it may be his right eye more than he his left and it really seems to cross inward. I scheduled an appointment with the doctor for next month with hopes for some answers. It just seems bizarre to me that we never saw anything like this and then very quickly in a few weeks span of time, it started to change. Just curious, has any of you whose children are wearing glasses or have had eye surgery change this quickly or was it more than was a slow process from the beginning?

Colin has a LOT to Say!

2012-01-11T21:21:00.000-05:00

I feel as though we are in a bit of a plateau right now in terms of Colin's walking. We were so excited because he started taking those steps and we felt like he was trying all of the time. However, Colin has become VERY stubborn and is walking less and less than he did before. It's discouraging for me only because I was so excited that it was happening. I know he will when is ready, but I am being very impatient (especially when I have to carry both kids all of the time!).

Despite the plateau in walking, we are taking off in the speech department. If only we knew what he was saying...

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...it IS becoming more and more clear, but not when he talks so fast! Don't you just LOVE the gestures?

Go Kailey!

2012-01-10T22:18:00.003-05:00

...and one day, she just stands up! We are so excited at our little girl who is very quickly becoming mobile! We enjoy this journey just as much as Colin's because it's different and just as exciting! Go Kailey!

Carter's Hope

2012-01-08T21:06:00.000-05:00

One of the things that got me through the first few days, weeks, and year of Colin's diagnosis of Down Syndrome was the community of special needs bloggers that I discovered and never knew existed. I was so excited when I received my first comment and still feel the same excitement today when I see a comment in my inbox. While Chris and I are extremely lucky to have an amazing support system in our family and friends, sometimes it helps to know that other people are in the same place, on the same journey and understanding how you feel through different challenges. I have been so lucky to have met an amazing group of people in blogland that I call my friends, while most of you I have never even met. You have helped and supported me through some of our more trying times and rejoiced in our exciting times!

One of the special people from blogland that I have had the privilege of "meeting" is Carter's Mommy from Team Carter. Carter had a chromosomal disorder among other medical conditions and he ultimately went to heaven at just 14 months old from complications associated with his airway. One can only imagine how the loss of a child must feel, but Carter's family has been doing some wonderful things in his honor.

One of the project's that Carter's Mommy is working is a website called Carter's Hope. The goal of Carter's Hope is to assist families who may just be starting out on their journey in the world of special needs. I know that a site like this early on in our journey would have been extremely helpful as we didn't know where to turn or start. We were honored to share Colin's journey on Carter's Hope and Carter's Mommy is hoping that you will too! Take a look at her site and check out the link to submit your story! Think about how helpful it may be to someone who is just starting!

On His Own

2012-01-06T21:18:00.000-05:00

When I was writing my guest post for a very special new site (more on that in another post!), one of the questions I was asked to think about was "what are your greatest challenges you face in having a child with Down Syndrome?". I think if you asked this question to a handful of my friends and family members, they could all answer this for you without needing to hear my answer- feeding. From Colin's very first bottle until now, we have faced consistent challenges when it comes to feeding with Colin, many of which I have talked about, vented, complained, cried, and just wished they would change on here.

Just before Christmas, we received the best Christmas present anyone could ask for when Colin started eating independently (well, mostly independently). However, our winter travels put a little halt to that because of the disruption in schedules. He would eat a few bites by himself and then constantly throw the spoon or fork down and refuse to eat by himself. However, we are slowly starting to get back into the swing of things and it feels really good. We were most excited this week when we got a note from Colin's teachers that said that Colin did great eating all by himself! I thought I would NEVER hear those words!

We still face a lot of challenges in this department because although Colin is growing, his weight is still lower than it should be (you should see his tiny little waist!) from the lack in varied foods. We can still count the things that Colin eats on one hand, but we are ok with this (for the most part). We try hard and we work at it and we know that it will all come when Colin is ready. Man, wouldn't it be nice ONCE in awhile if it happened on your terms?

Regardless, we are so proud of how far Colin has come and look forward to the new things that are still ahead of us.

Adventures in Traveling

2012-01-02T15:23:00.003-05:00

When I found out months ago that Chris was going to be going to North Carolina for New Years and to play a game at UNC, the wheels started racing in my mind and we I decided to drive down so that we could make a little trip of it. Although I was a bit weary of driving 8 hours with 2 kids, I honestly didn't think it was going to be to bad. I was excited because we would see my brother and his fiance's new house, visit with our blogging buddies the Donovan family, and it even worked out that we got tickets to a Duke game all the while celebrating New Years. Yay for adventure!

We were about to embark on an adventure, just not the kind that I had fully anticipated. The one we ended up with involved a lot of peeing, pooping and throwing up on MANY outfits.

We left Thursday morning just after breakfast and were off to a great start. The kids were packed in there (I swear, we couldn't fit ONE more thing in there) and we made it 2 hours before having to stop for the kids to eat lunch.

As I mentioned earlier, Kailey pooped out of her clothes in the car seat and cried the last hour because she was done in the car. Overall, it took 9 hours to get there with all of our stops and clean ups. We spent some time with my brother Tim and his fiance Val and then on Friday, Chris and I headed to the Duke game. Chris is a HUGE fan and I loved watching him enjoy himself.

When Adrienne from Our Unexpected Journey told me that they were going to be moving down to North Carolina, I was disappointed because we have loved getting together with the Donovan family and have our little boys play together. However, I was really excited to find out that they were going to be living very close to where my brother lives. We went to visit them on Saturday and it was like no time at all had gone by. I know I have posted about this every time we have visited with them, but I truly enjoy spending time with their family and watching our boys grow up together. I am so thankful for blogland for all of the friendships that have been created because something special has brought us together. We joke around that we are forcing our boys into a friendship, but it seems like it is blossoming on it's own!

Although we were off to a rough start because Colin was NOT ready to be awoken from his nap, we had a GREAT day with the family. Ainsley and Harper are so cute with the little ones; Bennett is so lucky to have such great older sisters!

Just the girls...

How cute are these boys together?! I loved seeing them laugh and play together!!

Love this picture from behind!

I don't think we have gotten one picture yet of the 4 of us and everyone looking at the same time, but we try!

Thanks guys for a GREAT visit!

We celebrated New Years with Tim, Val and her son CJ and rang in 2012 (seriously, 2012?!). On Sunday, we went to Chris' game at UNC and really enjoyed the experience. Our seats were ON the court! It's so neat that we get to have some of these experiences because of Chris' job. Colin LOVES basketball and although he was a bit sleepy at the game, still had a great time.

When the game was over, thinks didn't work out the way they were supposed to and I ended up walking back to the car by myself carrying both kids (needless to say, my arms are sore today). By the time I got close, my arms were quivering! I ended up improvising and feeding and changing the kids right in the front seat so that we could be ready to go when Chris got in the car.

Despite some struggles when we got started (rain, picking up a sandwich that took way too long, another poop incident, Kailey screaming for over an hour), we survived and made it home in about 8 hours.

I think we will hold off on some adventures for awhile, despite having a GREAT time on the trip. Thanks Tim and Val for having us and the Donovan family for a fun playdate!!

Winter Travels

2011-12-30T10:52:00.000-05:00

Yesterday we left early for our trip down to Raleigh, NC to visit with my brother Tim, his fiance Val, and son CJ. Both kids had a normal breakfast and we were off to a good start (especially since Colin took a nice poop just as we were about to get in the car, so I thought for sure we were lucky to get that out of the way!). We made one quick stop so that Chris and I could get some coffee and breakfast and made it to the Maryland House in about 2 hours where we stopped so that the kids could get some lunch. Both kids were happy and enjoying their lunch, and Chris and I may have commented on how well we were doing far (big no-no).

Both kids got changed and we got back in the car hoping to drive for hours before having to stop again. Well, sometime when we got into Virginia (only about 2 hours later), Kailey started stinking up the back seat so we made a quick pullover at the next rest area which happened to be at a McDonalds and I discovered that she had not only pooped, but it had escaped the diaper, clumped in her pants leg, up the back and was therefore all over. The bathroom was the smallest, most crowded bathroom ever so I was smushed in a corner while people waited on line to get in one of the 2 stalls while Kailey proceeded to stink up the ENTIRE bathroom. Gross.

Thankfully Colin was good due to technology and many episodes of Mickey and Baby Signing Time, but Kailey wasn't so happy the last hour. However, we made it and are relaxing today. Don't be jealous, but Colin will be hanging with his bud Bennett tomorrow and we will get to see the rest of the Donovan family from Our Unexpected Journey! We are super excited! I can't wait to see the boys play basketball together (or so I can hope...lol). So much has changed since this visit in July!

Hard Work

2011-12-28T19:17:00.000-05:00

Physical therapy is hard work!!

Ho Ho Ho, Merry Christmas!

2011-12-26T20:26:00.000-05:00

I think one day Chris and I will say, "remember Christmas of 2011? You know, the one where everyone was sick and not feeling well, when Colin was up at 5am crying and wasn't completely into opening Santa's gifts?" And although Christmas this year wasn't completely what I was expecting and hoping for, I am blessed to BE with my family and celebrate with them. So, despite it not being everything I had expected, it was everything I could ever want...

Just a few pictures from the weekend...

Kailey's first Christmas...she truly enjoyed herself!

We had a FEW moments of kids cooperating for photos...

Colin's favorite gift!

Happy all weekend!

One of the only moments Colin would cooperate Christmas morning...

One of my favorites :)

Happy girl!

...and just a short video of Colin's favorite Christmas present...

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The Day Before Christmas Eve

2011-12-23T14:21:00.002-05:00

I would say that today, Colin is feeling better, just not great yet. We had a follow up trip to the doctor today and she even commented on how much better Colin looked than when she saw him on one of his worst days. Unfortunately for us (which I knew we had to do), Colin needs to finish the dosages for 7 more days, which is torturous. I know he needs it, but we HATE giving it since he fights it so much.

When we got home from the doctor, Colin asked for ice cream which he finished and he is now currently working on pudding. Even that is an improvement from yesterday, so I will take it.

Unfortunately, Daddy is still miserable :( Everyone needs to get better NOW!! :(

Another Update

2011-12-22T23:00:00.000-05:00

When I left for work this morning, Colin was just waking up and he looked miserable. I felt so horrible for him but when I got home, he looked so much better. I was so happy because he even wanted to eat ice cream (2 bowls!). It was a bright spot of the day...

However, it was short-lived because he didn't want to take a nap, I tried walking them and neither of them slept, and then at the end of the night, he was very weepy and wouldn't eat anything else. The most frustrating thing of all for me as his mommy is that he won't take his medicine! If only he knew how much better that would make him!!

Hoping tomorrow is a better day :(

2011-12-21T20:52:00.000-05:00

Thanks for all of the earlier comments on the last post I put up today. Dr. Uma must have had a lot of messages on her machine today needing appointments because she decided to see patients for a little bit today for sick kids. So, Chris took Colin over and my poor baby has strep throat and an upper respiratory infection. His lungs were clear, so we were very happy about that. However, as many of you know, we face challenges when it comes to putting new things in Colin's mouth. Therefore, he has NOT been very receptive to any of the medication to treat his infections. I just have this knot of worry in my stomach because while we typically would then try to "hide" the medicine, Colin doesn't want ANYTHING to eat (including ice cream!) so this trick isn't working either. We managed to get the first round in tonight after 3 attempts that blatantly FAILED. I just hope he feels better enough in the morning tomorrow that he wants to eat and then we can hide a little bit more.

The only thing he got excited for tonight was a bath. When he was done, i got him all nice and cozy in his bathrobe (was handed down to him from his buddy Liam!). He looked so cute.

Unfortunately, Chris doesn't feel well either, and I am fighting the headache and achiness which has all made me feel pretty bummy and kind of put a damper on my Christmas spirit at the present moment. Hoping everyone feels better soon!

My Poor Baby

2011-12-21T12:33:00.001-05:00

My poor baby is sick and has been for days now. It started out earlier this week as what seemed like a cold and then he became more and more congested. Through the week he has been eating less and less to the point now where he really is only drinking juice. Yesterday after I got home from work, he looked really pale, so I picked him up and was holding him with him laying on my chest when he all of a sudden threw up all over me. It was a one time thing, so I really think it's because of the mucus in his stomach. He doesn't seem to have a fever, but is very mopey and not doing much other than lay around. I feel so bad and stressed of course with Christmas being this weekend. I just want everyone healthy and happy as we are all greatly looking forward to it...

I'm So Lucky!

2011-12-20T12:52:00.000-05:00

Every morning I am out of the house by 6:40am to get to work to get some things accomplished before my kids come in. It's tough for me because most of the time I only get a quick hug and a kiss from all three before walking out the door because they are all only waking up (at best) when I am leave. We are fortunate that Chris has somewhat of a flexible morning schedule so that he is available to be there for therapy and take the kids to school on his way to work.

Because I feel like I miss out, Chris is always very good about sending me pictures to work so that when I get a free moment, I can take a look and see what everyone is up to. Unfortunately, Colin is not feeling well at all, so Chris (thankfully) could stay home with them. I am so worried about him getting better before Christmas! He really won't eat much so I am starting to think he has a sore throat. Fortunately, we already have a trip to the pediatrician planned for Thursday for Kailey's checkup.

Here's what they have been up to yesterday and today...

Kailey learned from the best how to get in trouble!

This picture said that she was all over the place (I love to hear that one!)

Hi Mommy!

On her way to school yesterday

Hi Mommy again!

Getting into trouble yesterday (still manages to do that even when he isn't feeling well!)

I'm so thankful for ALL that you do Chris!

An Addendum

2011-12-19T20:10:00.000-05:00

Last night, Colin ate a whole bowl of pastina with sauce all by himself which is something he hasn't eaten in months! We were so excited that Chris and I were practically dancing around the table while he ate.

Unfortunately, he absolutely refused to eat it tonight and wanted nothing to do with it. In fact, all he ate was pudding for dinner which we are hoping we can attribute to the fact that he doesn't feel well. Either way, we are making some small gains!

Early Christmas Present

2011-12-18T13:56:00.000-05:00

Chris and I feel like Christmas came early this year. You know that one Christmas present that stands out above all of the rest in your childhood? Well, for us, it's the fact that Colin is mostly feeding himself all meals now! I have been pretty mum on it the past week because it's one of those things I didn't want to rush to post about since it was so new and he just started doing it, but he's REALLY feeding himself! The funniest thing about it is that he wants to do it by himself now because when you put the bowl down in front of him, he waves and says "bye" (his way of saying leave me alone).

We have been waiting a really long time for this! A lot is happening at once over here!

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Christmas 2011

2011-12-18T07:54:00.001-05:00

Faith Love Family Religious

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Brother and Sister Part II

2011-12-14T20:07:00.009-05:00

For the first few months that Kailey was here, I was desperately waiting for those moments that I could capture on camera of Colin and Kailey playing and laughing together. It took much longer than I expected, but their relationship has really been flourishing lately. There are more and more moments where I will find the two of them "talking" to each other, laughing, and actually playing together.

I was in the middle of doing something tonight, so I quickly put Colin and Kailey on Colin's bed together and they were having the best time. It truly does warm my heart to hear laughter from the two of them because they are having so much fun. Of course, those moments are sandwiched by lots of moments that I wouldn't want to advertise on here, but based on MY experiences of having two brothers and a sister, it isn't always laughter and fun.

Just a few moments I was fortunate enough to get...

...unprompted hugs for his sister...

...although it looks like he is about to bite her, he is actually hugging her and trying to say cheese at the same time...

...and then we start to get a bit on the rough side...

But, it's fun again on the floor...

...and sneaking away to the "secret hiding place"...

They are so cute together!

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Ice Cream!

2011-12-13T20:02:00.004-05:00

One gift that Colin has given me is appreciating the little things. I think so many people (myself included) are so guilty of rushing through things and not noticing all of the small little things that make everything so great!

I haven't spoken about it in a long time, but we have made some very small gains in the feeding department with Colin. Although we are not where I would like to see us at this point, we are ever so slowly working ourselves there, with a lot of practice. I think I mentioned in one of my last posts about feeding that we stopped going to the feeding clinic because we really felt that we were not making any progress with it. Ever since then, we have been working on some little things with two goals in mind; independent eating and varied food items. We have been very unsuccessful in introducing new foods (we are still sticking with scrambled eggs, yogurt, pudding, cottage cheese with berries, applesauce, pancakes and ice cream...that's IT) but we do notice some small gains in the independent feeding arena. We have been encouraging Colin to use the spoon or fork independently as much as possible. We are now at the point where we only have to hand Colin the spoon (instead of feeding it into his mouth) and he will put it in his mouth, but we can not put the plate or bowl on his tray and expect that he will do it himself. Occasionally he has done this with his yogurt, but it has to be the things he doesn't want to waste a drop of.

Tonight, I decided to give it a whirl since ice cream is very precious to him and he would never want to waste one tiny little bit. If he isn't interested in doing it himself, he will push the item away and refuse to do it himself. However, he fed himself the ENTIRE bowl of ice cream tonight! I am so proud and certainly appreciate that one small gain! Although this won't be consistent just yet, at least I know there is ONE food item he will feed himself!

Ugh, and Kailey? She is a gagger and it seems to be getting worse. Tonight I tried a small amount of applesauce and she gagged and wretched so hard that she threw up her peas that she had just eaten for dinner.

In this video, you can see Colin feeding himself and say ice cream! I was so excited (another appreciating the small things moment) because as I was scooping the ice cream, I could hear Colin talking so I looked over and he tried really hard and slowly pronounced ice cream! I got a glimpse of it on this video. So proud of my little boy!

9 Months Old!

2011-12-12T20:08:00.003-05:00

Happy 9 months to our beautiful Kailey girl!! So much has been changing with her lately and I feel as though time is just flying by! If you ask anyone, they will tell you she is a really easy going baby, however, she definitely has her moments. Her witching hour is generally any time after 4:30 pm because she doesn't nap during the day. Dinner time can be really rough because of this and she is usually in bed BY 7pm and sound asleep.

Although she is NOT our snuggler, she doesn't like being left along either. She needs a perfect balance because although she loves it when you pick her up and talk to her, she doesn't like being held too long either or else she gets really fussy and tries really hard to get out of your arms. If she is tired, she really doesn't like being rocked to sleep and won't settle in until you put her down in her crib. On Saturday, she had a really rough time trying to nap and it was the ONE time I got a nice hour snuggle with her when she fell asleep in my arms.

Kailey has become really chatty lately and will try to repeat a lot of what you say to her. She is saying Ma-Ma and Da-Da and loves copying you with an "ah!" noise. She will go on and on chatting (or complaining!). She has just become mobile too and we find that she will more easily entertain herself now that she can roll herself around the room or army crawl to what she wants.

She has perfected this "look" that is a mixture of a bashful/what are you looking at look and it's really cute!
We are still waiting for her 2 bottom teeth to come in and she has therefore had a runny nose for over a month! We are still struggling in the feeding department as she is a big gagger. I have been trying lots of different textures and tastes and I am not to successful in getting her off baby food. It's kind of frustrating since we were hoping it would be much easier with this one!

She is a screecher when she is happy and sure does lighten up any room she is in. She still loves her brother so much and they are really starting to play more and more together now. She laughs so hard at him and always tries to be near him. Looking forward to what the next month has to bring with her!

We love you Kailey!!

What We've Been Up To

2011-12-11T19:17:00.005-05:00

A blog friend of mine commented in one of her posts recently about feeling bad when you miss a day here and there. I feel the same way when I go on my stretches like I just did recently where I miss a few days occasionally, especially after coming off of a month like October where I managed to post every single day. We have been really busy here lately; so busy that I ended up taking off on Friday because I have gotten myself so stressed out (mostly over school stuff) that I felt ill from it. I didn't get out of bed until noon and I feel so much better now.

Both of our kids are taking off when it comes to accomplishing new skills. Colin is walking more and more and it isn't prompted all of the time. Kailey just figured out how to move around by doing the "worm" crawl.

The other night, we found Kailey sleeping like this, with her face pressed up against the rails of her crib.

We had the Special Olympics of NJ Young Athlete Program Holiday Party yesterday. I know I have mentioned this in previous posts, but I really enjoy going and watching Colin participate in the different activities. It's nice to be around other families that we would consider our "peers". Although Colin is still a typical 2 year old when it comes to his attention span, I can see that as time goes by, he will give a bit more attention to some of the activities. Kailey has fun too!

Coach Greg has been working really hard to try and get Colin to walk for him and try different activities. Colin is not always willing and lately, the only time he gives Coach Greg attention is during circle time when he crawls over and sits in his lap. However, we were so proud because yesterday, Colin appeased Coach Greg and walked across the blocks holding on to the bars like a big boy!

Later in the night, we went to Daddy's basketball game. Colin LOVES any kind of sport and will stop what he is doing while playing if football, basketball, baseball, and especially soccer comes on the TV. Last year he really enjoyed Chris' games, so I knew this year would be better. As soon as we got in our seats, Colin was so excited cheering and clapping at all of the right times. He was so happy and was waving to Daddy from our seat. Unfortunately, it's late for him, so from half time on he was very sleepy, but they were both so good!

Today we had my family over for a turkey dinner. I was so happy to cook for everyone and also feel pretty good to have my grandparents over and show them what I can do.

I am really looking forward to Christmas as I think it's going to be a lot of fun with Colin and Kailey this year!

This and that

2011-12-06T20:16:00.003-05:00

I haven't been the best about updating lately, partially because I am still riding on the high of having Colin doing a little bit of walking and partially because I have been very overwhelmed with other things that I need to get done. We have had some fun and busy weekends lately, and really starting to get in the holiday spirit.

This past weekend, we participated in the Special Olympics of NJ Jingle all the Way 3K race with Colin's Aunt Beth and Uncle Jason. It was really fun and the first one that we participated in. I really enjoy being a part of the Special Olympics now. There are some feelings that I get when we are involved in different things that really make me feel like we are a part of something. I love that Colin is a part of his Young Athlete Program, and I really enjoy watching him move around excitedly from one thing to the next checking everything out when we are there. I ran the race the other day, and shortly before the finish line, Chris gave me Colin and we walked across the finish line together. However, Colin let go of my hands and walked independently across the line into Daddy's waiting arms. How cool?

A photographer got our picture and we ended up in the newspaper! What a great way to represent the Special Olympics by having my little boy walking! To see the picture, click here!

While we were there, Colin saw Santa and at first sighting, was extremely excited to see him. However, after multiple attempts, he was still pretty nervous seeing Santa.

We also put up our tree last night which i just love! Colin was a big helper initially, but since it was getting late, both him and Kailey were not full into participating. Chris and I flashed forward to our potential future when they didn't want to help...lol.

At the very end, Colin did NOT want to take a picture in front of the tree, but Kailey was ok with it!

He's Walking!!

2011-12-02T21:59:00.002-05:00

I can't contain my excitement any longer. We get closer and closer with each day and it's putting me on such an emotional ride because I am SO PROUD of my little boy!

Colin, Kailey and I were playing together tonight (after I was going to put them to bed...so glad I didn't!) because Kailey had rolled herself all the way across the floor and then underneath the easel on the other side of the room (while drinking her bottle, mind you). Colin would stand up and take a few steps to me, but at one point, he stood up with his back to me, so I said "go ahead!" and he walked across the room! Every time I videotaped, he fell down halfway, but the coolest part is that he gets right back up and keeps going!

The video is about 4 minutes long, and the best walking is at the end so hang in there to the end. I am so excited because we are just about there!

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Fun with the Webcam

2011-12-01T21:22:00.002-05:00

It's no secret here, my kid LOVES seeing himself in the mirror, in pictures, AND on camera...

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Even Closer!

2011-11-28T20:57:00.003-05:00

I always thought that I wouldn't do a post about Colin standing and walking until he was really walking. Like, no question, walking.

However, I never knew I would be THIS excited over each of the little steps that are leading up to the day he is just going to take off. When I got to school to pick up Colin, his one teacher (who has been working hard with him too) excitedly told me that while she was walking with Colin today he let go, and took 5 steps independently!

He is standing up in the middle of the floor (only when HE wants to) and I just feel that we are so close.

We have literally been waiting a solid year and a half for this and the feeling of getting closer is amazing...

We just might have the best Christmas gift ever this year!

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So Very Close!

2011-11-26T22:36:00.002-05:00

We have been waiting so very long to see Colin stand and walk. Lately, he has been more comfortable walking only holding one hand and then today he stood up repeatedly in the center of the floor and then took 3 itty bitty independent steps into my waiting arms. I was screaming like a mad woman because I am so very, very proud of him! I forgot my camera at my friend's house, but I happened to catch this picture on my cell phone to send to Chris. This will have to do for now.

Could I potentially be getting the best Christmas present ever?!

What I am Most Thankful For

2011-11-23T19:38:00.002-05:00

This is a big time for people to announce every year what they are most thankful for. My blog post today is dedicated to that same topic, however, I can honestly tell you that I am thankful every single day for my family. I feel a twinge of sadness every morning when I leave my family after only briefly seeing them awake, and extreme excitement those first few moments when I see them again. I am thankful for smiles that show the same excitement on Colin and Kailey's face when I get to school to pick them up and on their faces when their Daddy walks into a room. I am thankful.

I am so thankful for my family and could.not.imagine. my life to be any different. They fill my heart with so much love...

I am thankful for my family, my friends and for all of my friends from blogland, most of whom I have never met, but I feel like are my old friends.

I wish you all a very Happy Thanksgiving...

A SIMPLE PRAYER OF THANKFULNESS

What is my prayer of thankfulness?

I thank You, Lord . . .

For having a warm place to stay.

For having enough food to eat.

For having an abundance of clothing.

For giving me friends.

For giving me kind words to say.

For peace in the knowledge I belong to you.

For loving me unconditionally.

For your patience with me.

For the assurance that I'm going to heaven.

For the courage to not look at things as they are, but instead to look at things from God's perspective.

For your assurance that I can give all my cares and burdens to you.

For always being there to hear my prayers.

For answering some I haven't even said yet.

For making my cup to runneth over with joy when there's absolutely no natural reason for it.

Thank you.

Special Olympics of NJ Awards Dinner

2011-11-21T19:01:00.003-05:00

A couple of weeks ago, we were invited to the Special Olympics of NJ awards dinner. We were so excited to receive the invitation and really looked forward to going. We have been starting to get more involved with the Young Athlete Program and have really started to get to know some of the staff members of the SONJ.

Last June I posted here about volunteering at the 2011 Summer Games and how rewarding of an experience it was. Being a part of these events gives you this feeling that is hard to describe and makes you feel like you a part of something big.

My friend at the Special Olympics sent me an email this week suggesting that I bring tissues to the dinner. I could see why. As soon as I walked in the door and saw the NJ members of Team USA walking around with their medals that they won at the National games I was tearing up. I knew it was going to be a great night.

We were excited because Colin made a quick appearance in the opening video of the night. Before dinner there were awards for the sponsors of the Special Olympics and then after dinner we were privileged to have Eric LeGrand as the guest speaker for the evening. If you are unaware of who he is, he was a football player at Rutgers University who was paralyzed last football season during a game. Since his injury, he is well known for his heart and determination to improve and one day walk again. He was incredibly inspiring and we were able to go up to tell him and his mom at the end of the evening. The one really neat thing about Eric was that he has been involved in volunteering with the Special Olympics long before his injury.

However, for Chris and I, the highlight of the evening after a very inspirational, amazing and heart warming awards dinner, was to see our little boy, up on the big screen to end the closing video of the night. Now, Chris and I were already crying through the entire video because it was that great, but then when you think the video is ending, Colin appeared on the screen! Needless to say, I was balling.

What an emotional and amazing night. While I was sitting there crying through the video, all I could think was wow...I am so lucky to be a part of this. I am so Thankful for Colin.

special thanks to the special olympics of nj for sharing the video...what an amazing night. Thank you!

Say Good Morning...

2011-11-20T19:20:00.002-05:00

I have a post I am so excited to share about our experience at the Special Olympics of NJ awards dinner the other night, but I am waiting until there is a video put up on youtube that I can share with all of you. Just as a preview though, one of the best experiences...can't wait to share!

Colin's new favorite song lately is one that they sing at school every day during circle time. He asks for us to sing it by starting to pat his knees the way they do during the song. He really loves it and I got this video yesterday morning when him and Chris were singing it. The first time around pre-video was much better, but I love how the overemphasize certain syllables of the names. He gets really into it...

Brother and Sister

2011-11-17T20:36:00.004-05:00

Chris has been traveling a lot for work lately (unfortunately), so although I have had some help (so happy my sister moved to the area!), it's really, really, really hard to do everything myself. I really appreciate all of the things that Chris does when he is home and I really notice it when he isn't here because I am doing all of my jobs plus the ones he normally does. It's been hard to sit with the kids and play as much as I try to do on a normal day because there is always something I have had to get done. Yesterday while I was trying to get dinner ready (Chris was coming home...yay!), both of the kids were in the living room. Everyone once in awhile I would peek in there to make sure that nothing bad was going on and they seemed to be just playing parallel to each other, but not really interacting.

After a little bit, Kailey started giggling, so I peeked around the corner and found the cutest scene...my kids were actually playing with each other!

In this picture, I walked in and Colin was very gently rubbing Kailey's head!

...and then Daddy was finally home!!!!

I love seeing glimpses of the future of Colin and Kailey really playing with each other. I can't wait to get more of those glimpses!

The School Day

2011-11-15T20:28:00.003-05:00

I am so thankful that I am not the one that has to drive Colin and Kailey to school every day because it really tears on my heart strings. Even worse, I had to wake the kids up today and Colin was still groggy when we got in the car. When we got to the traffic light at the end of the road, Colin looked at me with a pouty face and said "home" over and over again. On top of that? He cried pretty hard when we got to school. Thankfully, I know they do ok during the day and are really happy where they are...

Our Weekend Recap

2011-11-13T19:17:00.012-05:00

We really had a fantastic weekend together this weekend and it was really extra nice because it was 11-11-11 AND I had off from school on Thursday and Friday. There are so many little things to update you on and I am excited to share because there was a whole lot of cuteness going on...

Saturday we had Colin's Special Olympics of NJ Young Athlete program. When we got there, Colin got into the gym and said "oooohhhh woooowwww"! The young volunteers were still setting up, so we sat in the stands and waited and Colin just kept clapping for everyone.

Early on, Colin went around to the different stations and seemed to enjoy what he was doing. He especially loved playing basketball with Daddy.

...then he was off to the tunnels.

...I can tell that Kailey will always be Colin's biggest supporter. She was so good and happy watching what was going on.

He tossed the ball back and forth...

...again with Daddy.

The group got together and did the parachute which Colin enjoyed.

...I was able to get him to throw bean bags through the hoops,

but for the rest of the 40 minutes of the session (of 45), Colin was doing this...crawling EVERYWHERE. While the previous pictures show he was participating in the different activities, he was literally at each of those for about 30 seconds, and then he was off crawling again.
However, at the end, we got together in the circle again to do this activity which Colin loved participating in (it was kind of like a song with clapping and other activities)...

...and slowly but surely, Colin made it to the center of the circle where he was EXTREMELY happy to be.

If I tried to pull him back, he just scooted his body back to the center again. Here is stretching like a big boy...

For the rest of the weekend, we were mostly around at home enjoying being together. Kailey's new favorite toy is the farm and she seems like she is talking while she plays with the animals.

These next few pictures are from this morning...

...and then from raking leaves and cleaning up the yard this afternoon.

And one more thing...Kailey PERFECTED her "cheeeeeese" face this weekend. As soon as she sees the camera on her, she cheeses it up for the camera.

Hope you all had a great weekend!

Happy 11-11-11!

2011-11-11T21:48:00.007-05:00

11-11 has been one of my very special days for a long time now and I have sort of dubbed it my holiday. If you are interested in the back story to see how and why it all started, please read one of my old posts here.

The reason why I love this day so much is because it is my opportunity to say thank you to all of those people in my life who have special meaning to me. I feel I have always been pretty appreciative of the things and people that I have, but since having children, I think I have become that much more thankful for the people that are a part of my life.

When I think about this day, I always think back to a quote that I started to love when I was in high school...

"Some people come into our lives and quickly go. Others stay for awhile and leave footprints on our hearts. And we are never, ever the same."

There are so many people that have left footprints on my heart and for that I am truly grateful. I am so thankful to my family who have always been there for me and to my friends (new and old, those I have met and those i haven't) for making my life that much richer...

Hope you all have had a special day!!

...and on this special day, some cute pics of my little guy and girl. Colin got a new haircut today and although he has been a bit on the cranky side (I'm guessing those eye teeth are on the move again), we had a fun dinner time together. But first, Colin is starting to learn how to take his shirt off...slowly but surely I am guessing he will be undressing himself

Chris, Colin and Kailey...I love you guys more than you know. Happy 11-11-11!!

Meet Piper!

2011-11-10T21:22:00.003-05:00

It's funny how life works itself out sometimes...For several years now, we have gotten to know friends through my great friend that I have had since high school. They have had some ups and downs when it comes to having a child, but have been blessed with their little girl Piper...

I think we were brought into each other's lives for a very important reason, but most especially, because we are sharing this journey of having a child with Down Syndrome together.

We had the opportunity to meet this cutie right before Halloween and she sure is a precious little girl. Piper's Mommy just started her own blog called Precious Piper, so if you get a chance, could you head on over and meet Piper?

Piper's Mommy and Daddy are very new on this journey, so if you have any comments, words of advice, or encouraging words, I am sure they would appreciate it very much!

This and That

2011-11-09T19:47:00.003-05:00

While I was feeding Kailey dinner last night, Colin was sitting on the floor playing with his bat and putting it through the rungs of the chair that I was sitting on. I guess he thought it would be a good idea to put his body through and when he started whimpering, I looked over and he was stuck in this position.

So, being the nice Mommy I am, before attempting to help him, I ran and got the camera first...after all, it was a GREAT photo opportunity.

I gave him a few minutes to work it out, and he did...

...it made me giggle.

Tonight during dinner, Colin asked for ice cream, so I was letting Kailey have some as well. Her first bite was hysterical because the cold must have been too much for her. However, watch her face as she starts to adjust to the taste...

Also, Colin is doing so great with his speech lately. He is trying to say almost all of the words he signs, so it has been so cute listening to him. We also discovered that he knows most of his shapes! During circle time every day, they work on shapes and other things. They told me the other day that Colin is saying or signing most of the shapes so we are so happy to hear this! In the video, I ask Colin to say a few of my favorites...

And finally...Colin took 3 steps on his own the other day! He decided to push his grocery cart on his own and when he crashed into his chair, he let go and took 3 steps to Chris! No video yet, but we are so much closer!!

Practice Makes Perfect

2011-11-07T19:53:00.001-05:00

Tonight's task at dinner was working with a fork...partially for selfish reasons (didn't want tonight to have to be a bath night).

...loving this progress!

Making Progress

2011-11-06T21:32:00.002-05:00

I am so excited to say that we are finally seeing signs of progress in the feeding department with Colin. I mean real progress....

...our meal times are slowly becoming less stressful and I feel like something has changed in the fact that Colin is more interested in eating since he asks to eat when I think he is hungry and he asks for specific things as well. We don't need to use the TV anymore AND meal times are becoming more and more enjoyable again.

The first video is from lunch today when Colin was trying pretty hard to feed himself his pudding. There are still things he refuses to feed himself, but since he was really motivated by the pudding, he was interested in feeding himself. (don't mind the video being on it's side...it was started in one direction and then got flipped)

The second video happened after Colin ate his whole dinner. He has really shown an interest in pizza lately and he was happily eating some of mine.

I am loving this progress!

Walking

2011-11-03T20:02:00.002-04:00

Chris and I want Colin to walk so badly so that every little thing he does that shows he is taking a "step" in the right direction makes us super excited. Yesterday during the transition meeting, it came up that Colin still isn't independent walking yet despite the fact that we explained that he is walking with minimal assistance. Someone brought up in the meeting about whether or not we would need to get him special equipment (whether it be "medical" equipment or simply a stroller) so that he could get around at school if he still wasn't walking by the time he started. Oh the look I must have had on my face! I quickly started saying that if someone would just hold his hand, he would walk! I do NOT want that option even surfacing again! As Chris and I said, we don't need him becoming comfortable getting pushed around everywhere he goes!

Anyway, Colin must have had a birdie in his ear because he had physical therapy today and she did a lot of work with one handed walking which he really hasn't done much of lately, or at all. Since that session, I have been able to walk a few short paces only holding on to one hand and he seems much more confident than he did before. We are getting so much closer and I just can't wait!!

The Transition

2011-11-02T19:54:00.006-04:00

Today was a big day...we started with our first meeting of Colin's transition to the public school system. It was an interesting experience and I can't believe we are at this point already! Colin does have a ways to go (6 months), but they like to get started around this time to introduce us to the idea, get started on the paperwork, and then give us a tour of the building where he will be attending.

The school is 5 minutes or less from our house and is only a few years old. We met with a social worker from the district, an intern that was working with her, our case manager from Early Intervention, her intern, and our physical therapist. The social worker explained the different programs that are available and all pertinent information that goes along with this.

After Colin is evaluated, it will be decided that Colin will participate in one of these 3 programs:

1. 2 hour program: 1 special education teacher, 1 paraprofessional, typical children who put their names into a lottery and pay to go to the school, and about 6-7 kids who are classified. Originally I had it in my head that this was the program I wanted Colin in because I wanted him with typically developing children, but they are allowed to have up to 18 kids in this classroom and when I peeked in, it was way too many kids for what I want for Colin.

2. 3 hour program: (his most likely choice) 1 special education teacher, 2 paraprofessionals, and the max number of kids is 12. The children in this class are all classified, but it is a range of disabilities.

3. 5 hour program (full day): 1 special education teacher, 3 paraprofessionals, and the max number is much less but these children that are classified have more needs due to medical conditions or cognition delays.

We toured the school and when we walked into the class of the 3 hour program, the kids were working and she asked them to say hi and tell us what they were doing. It was really cute. I think people expect that this is going to be really hard for us, but we are used to having Colin in a school setting and I am really excited to challenge him in a setting that is geared towards him and his needs. Of course, it's hard to think of my little boy getting on a bus and going to school at 3 years old, but it's what we have to do so I think it's just an idea that we easily accept.

One thing that is difficult though is to sit in these meetings and listen to everyone talk about your child in such an official way. Chris and I were saying after that we just wish we could have had him there so it wasn't so official and so they could see how awesome he is :)

Soon enough...

Funny times!

2011-11-01T19:43:00.002-04:00

Ok, I actually wasn't going to post today because I was going to take a break after the challenge. However, this was TOO FUNNY not to post. The only thing that would have made this funnier was if Colin had put Kailey in the shopping cart (I did it though). Colin started pushing it on his own earlier today (which he doesn't do often AT ALL) and I got the brilliant idea to stick Kailey in it. She loved it and I think Colin wasn't too sure if it was good or not.

31 for 21 Day 31: The Last One

2011-10-31T20:35:00.005-04:00

Well, I've arrived. I made it through the 31 for 21 challenge (I found it much easier than last year), but partly because I made it part of my evening routine every night. The hard part was getting to read everyone else's blogs regularly too :(

We celebrated Halloween today with our two little monkeys. The kids had a parade and party at their school, so it's always fun to see the little kids dressed up (think of all of that cuteness in one place!) and to catch up with the parents that I don't usually get to see. This was the first year I made it to some of the parade but didn't get to see either of my kids until they were heading back inside.

When we got home, we went "trick or treating" for a little bit, but we mostly just walked to a few houses of the people that we knew so that I could say hi.

Trick or treating was a bit exhausting for Kailey apparently...

It feels good to end the challenge with something so normal. Happy National Down Syndrome awareness month!

31 for 21 Day 30: The Good Life

2011-10-30T20:01:00.002-04:00

Very early on in the 31 for 21 challenge, I heard the "Good Life" come on the radio by One Republic and it got me thinking about Colin, his life, and all of his peers who also live with Down Syndrome. We all have been working really hard this month to spread awareness about Down Syndrome and the lives of those living with it. We want people to know and understand that a disability doesn't define our children because they have so many abilities that make them who they are.

I am proud of Colin for showing the world that he is the most loving, fun, silly, inspirational, special, hard working and normal little boy.

...and he happens to have a little something extra.

I am thankful to all of you, whether you have a family member or not with Down Syndrome, who help us spread the word, who have changed using certain words, who have donated money, posted messages on facebook, participated in walks and events, and so on for joining us this month.

I am most especially grateful to all of those who submitted pictures and quotes to my project to highlight that even though those living with Down Syndrome have a disability, they do truly live the good life.

Enjoy.

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31 for 21 day 29: Brother and Sister

2011-10-29T19:55:00.002-04:00

I honestly thought that when we brought Kailey home, that brother and sister bond would be there and would be perfect. I thought Colin would dote on her and smother her with hugs and kisses just like he does with us. I was shocked when it was quite the opposite. In fact, I have been disappointed that he isn't more interested in her. Don't get me wrong, he WILL give her kisses and when no one is around, we often find him entertaining her by playing peek-a-boo, trying to give her her empty bottle, or will just play with whatever she is playing with as well. He definitely doesn't like to be forced into doing anything with her, which I think is why we see more of the playing together when we are watching from the other room. Kailey loves him, but I think she has a ways to go before Colin is as interested in her. I am hoping that as she becomes more mobile, he will take more of an interest in playing with her.

Tonight, Chris and I were both in the kitchen and we heard Kailey squealing like she often does when she is happy or laughing. We peeked in and this is what we saw...

I guess Colin wanted to play and his only option was to sit on her lap. She got him back though by slapping his back and grabbing at his clothes. I guess we have a lot of days like this in our future...

31 for 21 Day 28: A Glimpse Part II

2011-10-28T19:37:00.002-04:00

You know how I said yesterday we can see a glimpse of our future in eating? Well...

This guy?

He was REALLY interested in Chris' pizza tonight (not mine, just Chris'...I guess Daddy pizza is better than Mommy pizza) and was taking bites, chewing and saying Mmmmm! The best part? He kept asking for more AND if you asked if he wanted more he would say yes!

We got a tad bit greedy and tried to cut the pizza into pieces, but he would only throw them on the floor and then I tried cutting his own piece (a small sliver off of another piece) and although he picked it up and took a bite out of it, I think he liked eating Chris' better. However, a baby step right?!?!

It truly is the little things that give me the greatest joy these days!

31 for 21 Day 27: A Glimpse

2011-10-27T20:05:00.002-04:00

It's no secret that we have spent the past 2.5 years with Colin facing feeding struggles of some sort. There are days when we feel like we will NEVER get to have Colin eating independently without any kind of struggle.

...and then there are days like the past few dinner times where we see a glimpse of the other end of the tunnel. Colin has been excited for his pancakes, has asked for it, has drank ALL of his pediasure in his cup, AND has been eating a whole banana along with the pancake. We put one piece at a time on his tray, but he will pick up all of the pieces himself and eat them. We are even seeing some slight chewing when we would never see that before. We are not seeing any changes with the spoon feeding, but as with anything, it's one little tiny baby step at a time.

In this video, he started acting out as soon as I had Chris video his eating. He was doing so well, but needed to put on a little extra show for the camera. At one point, you can very faintly hear him saying pancake. It sounds like you only hear the "ck" sound. It takes about 10 seconds or so for the video to focus...

31 for 21 Day 26: A Day in the Life

2011-10-26T20:54:00.003-04:00

Most days, we go about a normal hectic day without much thought about Colin having Down Syndrome. I have to leave for work by 6:30am so that I can get some things done before school starts, and Chris feeds, dresses and drops the kids off at school. Two mornings a week Colin does have therapy that Chris is home for and then brings them after therapy is over. We are very thankful for Chris' flexible schedule in the morning so that the kids don't have to be at school to early. Before leaving for the work, Colin is usually waking up, so I will go in his room and sit on his bed with him for a few minutes. We "talk" and then I head out. Kailey is usually still sleeping, but once in awhile I will get a quick hug from her before leaving.

I'm pretty lucky though because Chris will send pictures throughout the morning so I can know what's going on with the kids.

They have time to eat, hang out for a little bit and play before leaving for school.

Unlike the first 2 weeks of school, Colin has been pretty good when dropped off. He will usually go right towards playing with either the other kids or the toys.

Colin has grown so happy at school that occasionally when I pick him up, he is not ready to go home. Today, he came crawling over to me as fast as he could on the playground and as soon as he got close, he turned and went to the slide instead!

The time that I pick the kids up at varies from day to day depending on what I have at school and if I am running or not after school. We go for walks, play with toys, watch Baby Signing Time and get ready for the next day.

Then...we do it all again the next day!

31 for 21 Day 25: I Didn't Know

2011-10-25T20:10:00.002-04:00

When Colin was born and I found out that he had Down Syndrome, I was really scared because I didn't know anything about Down Syndrome. My perceptions were based on the few experiences I had had growing up in school. I didn't know what the future would hold. I didn't know how people were going to react when we told them. I didn't know if Colin was going to have any number of potential health problems. I didn't know what the next day would bring.

With time, I realized that what I didn't know I would learn and that I didn't need to know everything.

Because I also didn't know that one day I would get so excited because Colin sat up for the first time, crawled, and then stood up. I didn't know that it would feel so good to have him eat a whole pancake by himself, drink his whole cup of pediasure AND have half of a banana in one sitting (tonight....yay!).

I didn't know that Colin would introduce me to a whole new community of friends. I didn't know that the smallest of milestones would cause the biggest cheers in my house. I didn't know that Down Syndrome wasn't such a scary place.

I do know that we don't have to know it all because we have Colin and we have learned to take it one step at a time...

31 for 21 Day 24: Reading

2011-10-24T19:53:00.003-04:00

Chris and I have been reading to Colin since he was just a new little baby. He went through periods where he seemed to "lose interest", but in the past 6 months or so, he has really enjoyed books. At the same time, his love for books has been coupled with his increase in his spoken words. We still continue to use signs on a regular basis, however, we have been really happy to see that he is really trying hard to say the words as well. I am amazed every day to hear new words coming out of his mouth. One of my favorites these days is him saying "please" because it's so cute and clear. Other new words he has been using regularly are pancake, book, home, thank you, lots of animal noises, and he will pretty much try and say anything. I love it. I am amazed every day when I hear something new or something that is not prompted. It truly is the simple things that make me feel so happy...

31 for 21 Day 23: Special Olympics

2011-10-23T19:50:00.004-04:00

Colin participated in his first ever Special Olympics event today through the Young Athlete Program. This program was a part of their fall festival and although we got there late, it was fun to participate. This is the very beginning of all that we hope to have Colin be a part of. The Young Athlete program helps to encourage the development of different skills in the young athletes. I was hoping that by the time we participated in our first event Colin would be walking independently, but he still had a great time!

He met some new people and worked with the physical therapist who is the "trainer" for the program. Colin wasn't the most cooperative little boy, but mostly because he wanted to do his own thing. There was a lot going on around us because there were many fields of different events going on, and there were a few times that Colin tried to crawl away to see what was going on.

It's funny because Colin is pretty popular already! There were a few people that came over to say hi to him because they thought he was so cute, and there were lots of people that just came over and said "hi Colin!". There was someone who came over and got him on video and several other people snapping photos of him! Of course he hammed it up as soon the limelight was on him! As we walked around, people were instantly attracted to him because he is a part of a community now. I am proud to belong to this community of families.

Part of the reason why we are so involved in the Polar Bear Plunge every year is because the money that is raised goes to the programs that Colin is now taking advantage of. We hope this is our biggest and best fundraising year yet!!

31 for 21 Day 22: Fundraising

2011-10-22T17:47:00.002-04:00

Today my brother Pat and his girlfriend Kristine hosted a fundraiser at the restaurant he works at for the Special Olympics of NJ Polar Bear Plunge in honor of Colin. It was a great success and we are so thankful to raise money for the Special Olympics of NJ!

We are so lucky to have so many family and friends who go above and beyond for Colin AND the Special Olympics.
Thank you SO SO SO MUCH Pat and Kristine for all that you did to set up for today's event. We love you very much!! :)

31 for 21 Day 21: Piano Man

2011-10-21T20:06:00.000-04:00

...Sing us a song, you're the piano man...

31 for 21 Day 20: A Perfect Mistake

2011-10-20T19:58:00.007-04:00

"Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. "

"Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with DS."

Down Syndrome is known to be an error, a mistake that occurs right at the beginning. When the "mistake" happened, my perfect baby was formed.

The question comes up all of the time that asks "would you change anything if you could". I have thought about this over and over again because I couldn't imagine not having my beautiful, loving, funny, and crazy little boy (feeding troubles and all). Do I wish that he didn't have to face certain challenges and work extra hard? Of course. But I don't want to change WHO my little boy is. That extra chromosome? It's perfect....

...It's the best mistake ever made.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."

- Psalm 139:14

31 for 21 Day 19: Everyday Life

2011-10-19T19:45:00.004-04:00

** Calling all Mommies, Daddies, and other family members of those with Down Syndrome. I am working on a project for the end of Down Syndrome Awareness month and I would LOVE photos of your kids (if you are interested of course). It will be a video and I will share it with you when I am finished. I wanted to highlight that our kids with DS really do live the "good life". You can send it to my email at kelliatobin@gmail.com. If you send a picture, please also send a word or phrase that you think describes your kids. Thanks! **

After we got home from school today, I set Kailey and Colin up in the family room to watch baby signing times. I left to unpack bags and get dinner ready when I heard a big "thump" (almost, the body hitting the floor kind of "thump" so I go running into the room and find Colin rolling the (rather large) pumpkins off and away from the fireplace.

He was so proud of himself!

...and, to make you giggle again, the next video shows the fun you can have with sticky syrup hands!

...and then some fun with Kailey as she was dancing to Baby Signing Times and playing with Colin. The biggest shock of all is that he didn't get super jealous when she was sitting in his chair!

Just a normal kind of day....

31 for 21 Day 18: The Positive Side

2011-10-18T20:23:00.004-04:00

Since most of the time whenever I talk about Colin's feeding it is negative, I decided to show you that I DO see a positive side on occasion. We know there has to be a bright side some point down the road, even though it feels so far away.

This was dinner tonight. On the one hand, Colin was doing really well feeding himself pancakes (the positive side) and I am really proud of him for how far he has come in that sense. This is the only thing he will feed himself and we have to put one piece at a time on the tray because as you will see in the video, he will stuff them all in his mouth if you give him more than one. (I wish he would do this with a spoon!)

But then, when I wanted Colin to drink milk with pediasure instead of his smoothie, he fought me and had a mini-tantrum. So, our meal times are very up and down but just wanted you to know that I DO see the good things when they happen...

31 for 21 Day 17: Counting

2011-10-17T20:07:00.002-04:00

Even though it may take a little bit more time for kids with Down Syndrome to learn things, it does not mean that it is challenging for all and they will learn all of the same things that typically developing children do. We have been working really hard on teaching Colin his alphabet, numbers, and colors. We try to count as many things as we can with Colin so that the repetition will help as a "hand over hand" technique. Colin is doing so well with his numbers and has a specific sound that goes with each number up to 10. This next video is horrible quality, but it was on my phone this afternoon after our walk and shows Colin counting. I love the little head nod too with each number.

31 for 21 Day 16: Family Time

2011-10-16T19:41:00.008-04:00

* Calling all Mommies and Daddies with a child with Down Syndrome! I'd like to do a special project to end Down Syndrome awareness month by showing our kids live the "Good life". If you are interested, I would love it if you could send me a picture of your child either alone, with a friend/family member, with your whole family or whatever works for you! You can send it to my email @ kelliatobin@gmail.com! Thanks!*

Just because you have a child with Down syndrome, does not mean that you spend every waking moment of your day and life thinking about it. In fact, most of our days are normal and busy and hectic and challenging, but not because Colin has Down Syndrome. We have little moments here and there where we are reminded that Down Syndrome is a part of our life, but for the most part, we are just a regular ole' family...

We drove out to a popular farm about 30 minutes from us today to go apple picking and they had the orchards closed! So, we walked around for awhile for some pumpkins and photo opportunities. The kids sure enjoyed themselves!

This may be my new all time favorite photo...

and another...Daddy daughter moment.

Love family photos...just wish everyone would look at the camera at the same time.

Aunt Kimmy came and spent the day with us!

I could get used to this...

Being entertained by her big brother...she thinks he is so funny!

...my happy little pumpkin girl.

Yes, Down Syndrome is a part of our life, but it isn't our life. It just makes us all who we are.

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31 for 21 Day 15: Fun Fall Day

2011-10-15T23:52:00.006-04:00

Today we had a 1st birthday party in a local park near us for our buddy Miles' first birthday. Aside from the wind, it was a BEAUTIFUL fall day. We were just a regular ole' family enjoying our day together!

Happy fall!! :)

31 for 21 Day 14: The Tongue

2011-10-14T20:07:00.003-04:00

When Colin was first born and through the first several months of his life, Chris and I were obsessed with what his tongue was doing. We over-analyzed how much his tongue was sticking out of his mouth and as we learned that it had something to do with his muscle tone, spent a lot of time doing the exercises we were told to build the strength inside of his mouth. For the most part, his tongue just kind of hovered around his lips, but I think we were so scared of the journey ahead, and because deep down I think we thought his tongue sticking out at times defined the fact that he had Down Syndrome.

It was just one of those things that we weren't quite ready for and worried so much about. When I look back now, it makes me chuckle because it's just another one of those things that we realize how far we have come. To worry about something so insignificant doesn't seem worthy now, but again, it's one of those things in our journey that got us to where we are now. Yes, it was insignificant and no he doesn't do it anymore, but heck, what did we know then?

Another reason I chuckle is because guess what? Kailey is doing it too...

...so it's not just about a baby with Down Syndrome!

...and just because I thought it was so cute, a video of Kailey giggling.

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31 for 21 Day 13: Feeding Difficulties

2011-10-13T19:50:00.003-04:00

I actually considered going back through all of my posts for the past 2+ years to see how many times I have talked, vented and cried through posts about Colin's feeding difficulties. Our biggest struggle to date is the fact that Colin doesn't have much of an appetite, he only eats limited foods (so limited I can count them on one hand), and that we haven't made any progress for a long time.

Chris and I have tried lots of avenues in order to overcome this challenge. We have read books, articles, tried tips from those experienced and not, taken Colin to 2 different feeding clinics, used a forceful feeding method, experimented with different textures, forced food, stepped back from methods, put Colin in front of the TV when eating, gone regularly to the feeding clinic while we are all evaluated, hid food in other foods, and on and on and on...

As Colin's personality and toddler-esque behaviors have emerged, the struggles have become more and more challenging. Chris and I come from families who have eaten many meals together around the dinner table and we have always done the same with Colin and now Kailey. However, there are nights where we want to pull our hair out (like tonight) where we sit there as Colin throws pieces on the floor, yells no, turns his head refuses to eat or drink because we just don't feel like fighting it anymore.

I don't think we ever expected to be spoon feeding 2 kids at the same time that are 2 years apart. Chris took Colin to the latest feeding appointment today and I think we are finally at the point that we are just going to back off for awhile. We don't leave there with a sense of relief or direction (except last visit for me because I thought I was headed somewhere) and also feel like things can't get much worse.

This challenge is really tough to deal with. We have literally been at this for over a year now (the feeding part) and it's not getting any easier. At. all.

Where do we go from here? Who knows...

...but we CAN say it's tiring and exhausting. We will keep trudging along, but hope that one of these days we can turn over a new leaf.

What we want? The simple pleasure of having our toddler feed himself , without a fight, and something more than what I can count on one hand.

31 for 21 Day 12: Telling our Friends and Family

2011-10-12T19:17:00.002-04:00

The day Chris and I received the call saying that the results of Trisomy 21 were confirmed, we were a mess. We honestly didn't know what would come next. After I spent my time crying, I got on the computer and started officially researching different things. The "rational" side of my brain kicked in and it was time to get to work. I started the blog, found other blogs, searched in google (yikes!) and found some official websites. Thanks to either the National Down Syndrome Congress or the National Down Syndrome Society, I found a guideline that I used to help write my letter to my friends and family that we hadn't told in person.

I dug back through my Colin folder in my email and found the letter as well as all of the beautiful responses we received back from so many of our friends and family members. One thing a lot of people worry about (us included), was how people were going to react to the news. I think it is hard for some people to know what to say or how to handle the situation, however, we were so incredibly lucky that everyone stepped up to the challenge as well...

"To our closest friends~

Words cannot describe how truly happy we are to have Colin in our life. He has been our blessing from the moment we found out we were pregnant and our lives were instantly transformed the moment we first held him. He is a very special baby and we were chosen to be his parents to take care of him and love him...We found out today that Colin has Down Syndrome. Chris and I felt that this would be the best way to tell you so that you had time to adjust to the news and not feel like you needed to have an immediate response. We are so happy and proud of our little boy and nothing will change that. We hope that you will be able to see him the same way that we do, as a special and beautiful little boy that we love with all of our hearts. We are a family now, so please don't apologize for his condition...God chose us for a reason and we are really trying to see this as a special job given to us.

Colin would still love to visit with his friends, so please feel free to visit him when you need some cuddle time.....

Thank you for your support and love during this time...

With Love,

Kelli and Chris"

At first, I thought I was going to try and put in some pieces of the responses into this post, but there is honestly too much to fill in. We are blessed. Everyone welcomed, loved, adored, hugged, visited, wrote, supported, and joined us in our journey.

There is never any way to know how to handle ANY situation, especially when you are thrown into it without any preparation. We have heard stories of people who lost friendships, had altered relationships and difficulties with certain friends and family and fortunately, we don't know what that feels like.

So, thank you, from the bottom of our hearts to every single one of you (old AND new) who have been there for us in more ways than I could ever list. We love you....we really do.

31 for 21 Day 11: Typical

2011-10-11T20:03:00.002-04:00

Colin is a typical 2 year old toddler...tantrums and all.

Need I say anymore?

...one exciting thing though...he DOES put two words together (no book!).

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31 for 21 Day 10: Therapy

2011-10-10T19:02:00.006-04:00

When we started out on our journey in the Early Intervention system, Chris and I felt pretty overwhelmed. The first person that came to our home was Colin's physical therapist (Miss Kathy) who continues to see him today. After every visit, the therapists would write out a summary form to talk about what was done during the day and then leave a couple of exercises to work on during the day. I used to think that these were things that HAD to be done as often as possible. I was obsessed! When we would have family members and friends stay with him, I would leave a list of when he ate AND exercises that should be done. I was adamant about this. Three things I was anal about: tummy time, reaching and grasping, and I even made some friends and family put Colin on the physioball!

Yikes!

When you have never done something before, you just don't realize that although you need to do those exercises when you can, it shouldn't take over your whole day either like I felt it was doing. There was no other option than to do the "homework" that was laid out for us for the week.

As we evolved through time, we started to realize that although we needed to work on these things (and still do), we do not need to obsess over them.

So, Chris was working with Colin today in "our way"...

...and Colin loved it!!

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31 for 21 Day 9: Just Because...

2011-10-09T19:47:00.004-04:00

Just because Colin has Down Syndrome, does not make him stupid. In fact, because he was so smart today, he nearly scared the crap out of me!

During nap time today, I decided to put Colin in his crib because I honestly didn't want to deal with him getting out of bed. When I first put him in there, he complained like he normally does but it didn't last too long. When I peeked in there 5 minutes later, he was laying down gnawing on his hands. I was taking care of Kailey when another ten minutes went by so I decided to check again on him and he was sitting in the crib reading a book that he must have reached and gotten off of the book shelf (you'll see the pictures of the location in a few minutes). Although I preferred to have him sleeping, he was quiet, so I let him be. I had the monitor on pretty loud so while I was sitting on the couch grading papers, I could hear the pages turning of the book.

...about 45 minutes go by and it had gotten pretty quiet, so I assumed that Colin had finally fallen asleep. However, I started to hear this funny noise on the monitor, so I paused the TV and didn't really hear it again. I hit play and not even 5 minutes later, I see Colin's FACE peeking out from around the corner of the refrigerator in the kitchen CRAWLING into the family room. Immediately, my mind was flashing (was I losing it? didn't I put him in the crib? where IS THE CAMERA?!) and then I realized that my little guy GOT OUT of the crib and came to see me in the family room. Oh, and Chris and I later realized that he took a little detour into our bedroom and pulled out clothes of mine from my bottom drawer on the FAR SIDE of our bed. Now, the funny thing was that I had shut his door, so it must not have clicked in completely and he managed to get that open.

I swear, my mouth was gaping open, I was doing a mix of crying and laughing hysterically, and Colin just crawled right in, said "hiiiieeeee!!!" and came right over to the couch, climbed up and sat on my lap (mind you, I was STILL in shock at this point).

Colin figured out how to get out of the crib, GRACEFULLY mind you, and come out to the family room!

The funny thing is I didn't hear one thump on the monitor, she he must have done it really well!!

When I went into his room later, I realized that he had unloaded one of the shelves of books onto the floor, so he must have used that ramp as his way to get down (and potentially the book shelf itself! Uhhhhh.....scary!!!).

I guess we can say that we are officially done with the crib. Here I was worried about him getting out of bed!!! The crazy part was that we have NEVER seen him even ATTEMPT to put his leg up to try and get out.

...and he did.

I swear, that is the craziest Colin story in his 2.5 years of life!

31 for 21 Day 8: Big Boy Bed

2011-10-08T20:51:00.004-04:00

So far after two days, we have a little boy in a big bed! Colin has now slept for 2 nights in his big boy bed and we are keeping our fingers crossed that we can continue this trend! He looks so cute!!

We thought it was a bit early to transfer him into the bed, but the new bed kind of fell into our laps last year when we went to buy him a new dresser before Kailey was born. Since it was a great sale for President's Day weekend, we decided to buy the bed too because it was such a great price. We were able to put the bed on layaway for 6 months and didn't have it delivered until the end of August. We were stalling a bit because we were trying to get bed rails for the end and side, but so far, only have an extra long one for the side (the shorter one is still too long for the end).

Last night, after reading books with Colin in his bed, I decided to just leave him there and see what would happen, fully expecting him to crawl out when I left the room. However, he surprised me by staying there. Before I did my post last night, I went to go get pictures of him sleeping in his bed, but when I opened the door 45 minutes later (expecting him to be sleeping since I didn't hear anything) he popped right up and said "Hi!". I decided to lay with him and was rubbing his arm and when I stopped, he picked my hand back up and put it on his arm again. I started giggling, and then he was giggling, and then we were little kids giggling in bed. So cute...

...love the butt up in the air!

This morning, I never heard him thump out of bed (he must have done it gracefully) but the next thing I heard was him knocking on his door saying "hi".

...we gave it a whirl again tonight and although he was whiney for a few minutes, he seemed ok when I left the room. While I was changing Kailey a bit later, I heard what sounded like Colin getting out of bed. I peeked in there and Colin was "jumping" in bed (getting up on his knees and flopping on his bed over and over). I was actually happier with that than him getting out. So, I told him to lay down and he then fell asleep pretty quickly after.

Although he has yet to lay in it like most people would lay in bed, I love the transition!

31 for 21 Day 7: Ordinary Moments

2011-10-07T21:06:00.002-04:00

I think that one of the easiest things to do when your child is diagnosed with Down Syndrome is to immediately flash forward to the future. There are so many what-ifs that start brewing in your head. Not only are there what-ifs, you are SO far in the future that you are worrying what's going to happen when he is 30 years old.

Slowly as you go through time, you also move backwards from the future until you end up right where you are in the present.

As we started to get used to the diagnosis, the worries about the future started to fade a bit. Sure, I still think about it, but it's not as scary as it used to be.

...so for now, we just enjoy the ordinary moments.

31 for 21 Day 6: Blogging about Bloggin

2011-10-06T19:55:00.002-04:00

Back on day 2, I wrote a post about why I blog and I received a comment from Amanda at Why I Blog. It's really neat because if you take a look at her blog, you can read about all of the different reasons why people blog and put their life out on the internet.

She told me that if I was interested, I could submit my post to her site and so I did. I thought that it would be one more avenue for me to show people that Down Syndrome is not a scary place.

Check it out here! There is a link if you are interested to submit YOUR story!

I participate in the 31 for 21 challenge because I want to show the normal every day life about someone living with Down Syndrome and how one little extra chromosome doesn't define them. I constantly use Colin as example in my classes with my students, I plunge in the middle of the winter in the 30 degree ocean, have fundraisers, submit my story, participate in photo contests, etc. because I want people to see that Down Syndrome is beautiful.

That's why I blog.

Thanks Amanda for putting our story on your blog!!

31 for 21 Day 5: Spread the Word

2011-10-05T20:19:00.004-04:00

If you look up the word retarded in the dictionary, this is what you will find...

verb (used with object)

to make slow; delay the development or progress of (anaction, process, etc.); hinder or impede.

verb (used without object)

to be delayed.

noun

a slowing down, diminution, or hindrance, as in a machine.

Slang: Disparaging .

a mentally retarded person.

a person who is stupid, obtuse, or ineffective in someway: a hopeless social retard.

People use this word all of the time as part of their everyday language. I have used this word in my lifetime.

As I admit to that statement, tears are burning my eyes. I have used the word retarded. It doesn't matter that I now have a child with delays, I should have never used the word. It hurts my heart to admit that now, but I learned that too. I learned that it is NOT OK to use the word.

If you look at the posting from the dictionary above, the R word IS a slang term referring to "a person who is stupid, obtuse, or ineffective in someway". People use the word all of the time by saying "That is so __________ ". "It's so ________". Believe me, I know you don't have the intention of being mean when you use that word because you don't mean harm by it, but, by using the word, you ARE saying that something IS stupid, obtuse, ineffective, or less than you, etc.

Is he?

Make a change. Pledge that you will no longer use that word. It IS hurtful. It IS mean. Please think of my sweet boy who works really hard every day to do the things that comes so easily to others. Please think of him if that word comes to your lips.

You can take the pledge by visiting the R-word: Spread the Word to End the Word Website. Please pass this post on to your family and friends and remind them that it is NOT ok to use this word.

YOU can make a difference.

31 for 21 Day 4: Just Like Any Other Boy

2011-10-04T20:30:00.004-04:00

Do you want to know what I think is the most scary thing about getting a diagnosis of Down Syndrome for your child? Different.

Do you want to know why?

I used to be afraid to be different. I was afraid that people wouldn't like me. I was afraid to look different. I thought that things had to be a certain way, the way they were supposed to.

I thought that my first born was going to be just like any other baby...keep us up at night, drink from a bottle easily, sit up, crawl, and walk just like everyone else's babies would. I thought he/she would eat baby food, then puffs and pick things up off the floor and start feeding themselves food off of their tray.

I thought my life would be just like anyone else's would...

Right up until we were told Colin had Down Syndrome and then, we were different.

Today, different is ok because it's what makes Colin unique and special. Colin is different because he has 47 chromosomes instead of 46. He is different because it takes him a little bit longer to learn things. He is different because it is more challenging for him to do certain things. He is different because he has a unique personality that makes him who. he. is.

Do you want to know what I think now? Different is ok.

Be the one to stand out in a crowd. - Joel Osteen

This is a picture circulating on facebook right now and I just fell in love with it. Different is ok...

Yes, Colin is different BUT, he is just like any other little boy.

He LOVES soccer!! I love watching this video because he is so adorable and loves his sports just like his Daddy.

Make a video - it's fun, easy and free!
www.onetruemedia.com

31 for 21 Day 3: Colin's Personality

2011-10-03T19:47:00.005-04:00

Colin's personality has really been changing and emerging as he has gotten older. He really likes to make people laugh, especially Chris and I. Despite the fact his relationship with Kailey is so so depending on the day, he still likes to make her laugh by blowing raspberries in her face. She thinks it's the funniest thing, which only fuels his desire to continue to make her giggle.

Colin is a big ole' cheese ball. He has some pretty silly grins now and likes to ham it up for the camera. He doesn't always like to be on the receiving end of a picture, but rather, would love to crawl up in your lap WHILE you are taking the picture so that he can see what is going on.

Colin fiercely craves the attention and the spotlight, but more at home and with us (school is a different case). It makes me giggle to watch him at times try to get in Kailey's space because he thinks she is invading it. The other day, Kailey was sitting on the floor playing with her toys when he crawled over to her area, flopped on to his stomach, and starting stretching out his legs as far as he could to try and push Kailey out of the way. He just kept saying "ow"; his way of saying that she is touching him and he doesn't like it. Mind you, he crept into her space. There are days at school when I will walk into the room and say hi to all of the kids, and if anyone is too close to me and he can't quite get there, he just says "no" to them in his cranky type voice, like "it's my mommy, i want to get to her so get out of my way!"

If he thinks Kailey is getting too much attention, he gets right in the way. In the picture above, I was taking pictures of Kailey because she was sitting so well independently (she just started doing that), and since I wasn't looking at him, he tried to crawl right in front of the picture. Mission accomplished.

For the most part, he is very happy all of the time.

But, he has his moments and they come pretty often these days. If he doesn't like something or doesn't want to do it, he very adamantly says "no". His personality is very strong in this sense so our struggles with gross motor skills (walking) and most especially, eating, are met with strong resistance (to come in a later post). We face strong opposition when it comes to eating and eating independently, so it is a big frustration for us.

Since the beginning, Colin's therapists have always called him an "observer" and this still rings very true. There are days when I will pick him up from school and despite the fact they are singing a song he knows and loves, he will sit there and watch everyone else. I thought for sure that once he went back to school, he would be walking because of the temptation to be as involved as the other kids. To be honest, he is just as content to watch everyone else. We have just come to realize that Colin likes to take things in and watch what is going on around him. This aspect of his personality really shows when he says or signs words that we haven't been working on or may have only said once in passing. So while that side of his personality can be challenging for us, it's Colin's way of learning and taking things in.

These days, Colin loves to snuggle in and does this by scooting backwards into your lap which is one of my favorite things he does these days...

Myth #1: All kids with Down Syndrome have the same personality.

Our kids with Down Syndrome are just like everyone else's; they have their own personalities. Colin's is certainly his own and it makes him who he is...a fun loving, charming, sweet little boy (who has his moments just like everyone else).

Love for Colin

Shake that Booty!

A Day in the Life

Beautiful

Prayers for Precious Piper

On Being a Parent

Each and Every Moment

The Anatomy of a Sibling Shot

Anticipation Nervousness

Trouble-makers

"Choo Choo" Standing

Stubborness

Colin has a LOT to Say!

Go Kailey!

Carter's Hope

On His Own

Adventures in Traveling

Winter Travels

Hard Work

Ho Ho Ho, Merry Christmas!

The Day Before Christmas Eve

Another Update

My Poor Baby

I'm So Lucky!

An Addendum

Early Christmas Present

Christmas 2011

Brother and Sister Part II

Ice Cream!

9 Months Old!

What We've Been Up To

This and that

He's Walking!!

Fun with the Webcam

Even Closer!

So Very Close!

What I am Most Thankful For

Special Olympics of NJ Awards Dinner

Say Good Morning...

Brother and Sister

The School Day

Our Weekend Recap

Happy 11-11-11!

Meet Piper!

This and That

Practice Makes Perfect

Making Progress

Walking

The Transition

Funny times!

31 for 21 Day 31: The Last One

31 for 21 Day 30: The Good Life

31 for 21 day 29: Brother and Sister

31 for 21 Day 28: A Glimpse Part II

31 for 21 Day 27: A Glimpse

31 for 21 Day 26: A Day in the Life

31 for 21 Day 25: I Didn't Know

31 for 21 Day 24: Reading

31 for 21 Day 23: Special Olympics

31 for 21 Day 22: Fundraising

31 for 21 Day 21: Piano Man

31 for 21 Day 20: A Perfect Mistake

31 for 21 Day 19: Everyday Life

31 for 21 Day 18: The Positive Side

31 for 21 Day 17: Counting

31 for 21 Day 16: Family Time

31 for 21 Day 15: Fun Fall Day

31 for 21 Day 14: The Tongue

31 for 21 Day 13: Feeding Difficulties

31 for 21 Day 12: Telling our Friends and Family

31 for 21 Day 11: Typical

31 for 21 Day 10: Therapy

31 for 21 Day 9: Just Because...

31 for 21 Day 8: Big Boy Bed

31 for 21 Day 7: Ordinary Moments

31 for 21 Day 6: Blogging about Bloggin

31 for 21 Day 5: Spread the Word

re·tard

31 for 21 Day 4: Just Like Any Other Boy

31 for 21 Day 3: Colin's Personality