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!