A Day in the Life

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

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

It makes me so happy.

Prayers for Precious Piper

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

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

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

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

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

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

 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

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!

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!

...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

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

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

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!!