Happy Birthday Gammy!

Dear Gammy,

Hope you had a fantastic day yesterday celebrating your birthday! :) We can't wait to give you birthday hugs tomorrow!

We love you!!

~ Love,

Colin and Kailey

xoxoxoxoxoxo

First Day at the Beach!

Today was our first day at the beach and it was a beautiful day!! It has become our tradition Memorial day weekend to head over to the beach at least once with Nana and Grandad. Driving over there made me full of excitement for the fun that lies ahead this summer and I just can't wait. When we went for the first time with Colin when he was only 1 month old, we did not last long on the beach because any sort of breeze made him uncomfortable. He was constantly gasping for breath every time the wind would blow. Today, however, Kailey was a trooper and she was happy to be up there for her 1st time!!

Our beach days are going to be full of activity as opposed to relaxing like they used to be (which is certainly ok!). Colin is so active now and is busy trying to visit other families on the beach, especially when they have something he wants (like a ball!). We practiced walking since our PT is stressing uneven surfaces for building ankle and knee strength. It was a great day and I can't wait for many more!

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I Walk the Line...

So I thought that the easiest way to explain my frustrations today, would be to show how the day went in pictures. Colin had physical therapy today and I told Chris to mention to our PT that I was becoming frustrated waiting for Colin to walk. Yep, I'm impatient, not going to lie about that one. Again, I know that he will walk when he is ready, but I'm having a hard time the further past what was once my magic number of "2" we get.

While Chris was feeding Kailey, I was trying to have Colin practice alternating between the couch and ottoman...

...but he got tired of it real quick...




...and instead of working, he decided to sit.

I let him go for awhile and do what he wanted to do, and it was dinner time anyway. We tried something else right before dinner that you will see at the end of this post...

....he pulled out something new and was "relaxing" in his high chair. I can just hear what he is saying in his head: "nope mom, not gonna do what I don't wanna do."

After dinner and bath time, it was more practicing what you will see very shortly. Kailey was working hard though!! She was just hanging out in her bumbo holding her head up so well. What a strong girl she is!

So do you want to know what Colin always does when I start to get frustrated? He gives me a little taste to show me that is indeed working hard...

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Can you believe it?!?!

Colin's PT happened to call me tonight while I was in the middle of this post, and she told me that she was worried that we were frustrated with her! I felt terrible! We love, love, love her and know that she is working as hard as she can too! I just expressed to her that although I am in a much better place than I used to be, it's still hard and I just anticipate the day that he will be able to walk. I know it will be wonderful and exciting...but it's not always easy waiting for that time to come!

Can I Tell You a Secret?

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Happy Birthday Nana!

Dear Nana,

We were so happy to get to spend your birthday with you!! We love you so much and are so thankful for all that you do for us!!

We hope you had the best birthday!! (But really, how could it top your best birthday when you turned 24 and had our Mommy minutes before your birthday?!)

We love you! xoxoxox

Love,

Colin and Kailey

Happy Birthday Grandpa!!

Dear Grandpa,

Happy Birthday!! We were so happy to see you on your birthday and give you special hugs!!

We hope you had a fantastic day on Monday! We love you so much!

Love,

Colin and Kailey

xoxoxoxoxoxxoxoxo

Every Day

I think about Down Syndrome every day. It's not always for the same reason, or necessarily BECAUSE of Colin, but it does cross my mind at some point every day.

My first week back to school, it crossed my mind because I overheard teachers and other staff members during our NJ ASK standardized testing talk about how their special education students who were receiving extra help because of their diagnoses did not do well, or they felt bad for them because they had no idea what the questions were asking, etc. It made my stomach turn because I wondered if one day, someone was going to be talking about feeling bad for Colin because he wasn't doing well on his standardized tests, or because he was really struggling.

I thought about it in church today when our Pastor did a sermon on having faith and seeing God, even in the worst situations and it reminded me of his visit to us the day Colin's diagnosis was confirmed.

I thought it about it on Friday in school when one of my students said that something was the "R" word and I told him that he shouldn't be using that word (as I do with any word that is hurtful and inappropriate). At the end of class he came up and apolgized and told me that it was insensitive of him to say that (I told my students about Colin at the beginning of the year as I talked about their useage of certain words). It took me off guard, but I was so proud that he realized his actions were hurtful.

I thought about it when we were visiting a friend who is in a rehabilition center and another patient wanted to see Colin up close because he used to work with "them". He told us that "they" are highly intelligent. Yep, I definitely thought about it that day!

I thought about it in the grocery store when Colin waved hi and blew kisses at almost every person we passed. He brought so many smiles to so many faces.

There are times that thinking about Down Syndrome are for reasons that are bother me, upset me, or make me worry. More times than not, I think about it because of how Down syndrome has changed my life.

I am more aware.

I am more patient.

I am more blessed.

I think about Down Syndrome because I am proud of Colin for who he is and for how hard he works. He is so close to walking independently so tonight I was thinking about it because I can't wait for the feeling of when he takes his first steps...alone. He is so close, but I am patient and I will clap and cry and jump for joy the day it happens. It will be well worth the wait.

All About our Kailey Girl

Kailey just had her 2 month checkup yesterday and weighed in a whopping 11 pounds 6 ounces! She gained a pound and 6 ounces in one month putting her in the 75th percentile! Whew! She also grew 2 inches or so putting her in the 75th percentile for height as well. She certainly likes her bottles, unlike someone else we know who didn't do so hot when it came to drinking as an infant.

She is a pretty easy going baby and is smiling and cooing to our voices now. She is such a happy little girl but it can turn pretty quickly when she wants to eat. She goes from 0 to 60 in 2 seconds or less when she is hugry!

She does not tolerate tummy time too well (Colin never did either) and usually screams any time we put her on the floor on her tummy. Looking at this picture, you would probably think I'm lying, but this was the ONE time she fell asleep on her tummy...

She is very observant to the world around her and I notice that she smiles whenever Colin is nearby, even IF he grabs at her head.

She is a VERY strong little girl and is starting to hold her head up like a champ! In fact, she is so strong that it's hard to hold her sometimes when she is unhappy because she forces her body out in all directions. I decided to test out the bumbo seat and she can do a pretty good job in short stretches of time!

I can't wait to see what kind of relationship her and Colin are going to have with each other. As per usual, I'm impatient because at times, Colin is still very jealous of her and is not very nice to her. Chris made a very good point the other night when he said that a lot has changed for Colin lately between having a new little sister, teeth coming in, a change in his schedule at school, surgery, etc. Good thing he didn't see her trying out his seat!!

Sometimes we call her monkey arms because her fingers are so long and she still doesn't have great control over her arms yet. They are just very spastic and all over the place when she is active. You can kind of see it in this next picture...

When she smiles she has a beautiful smile and her eyes smile with her mouth. She has a cute little dimple on her right cheek which I just love! She just LOVES being naked and free so her most active happy time is on the changing table without any clothes or diaper.

The one itty bitty little thing that bothers/worries me is how she controls her neck when she is on the floor or in her crib, even in her bouncy seat. She always turns it to the left and especially when she is in her crib, she arches her back and turns her head and neck upwards to the left (almost borderline unnaturally far). I'm not sure why (those things start to pop back in my head that the PT and dr would talk about with colin with weakness on one side and all that crap). [sigh] Even with a kid WITHOUT Down Syndrome there are still things I worry about! And THAT one I worry about because of what I know about gross motor development BECAUSE of the Down Syndrome. Sometimes I wonder if it's because she has a bit of reflux so maybe her tummy is uncomfortable and she just arches and rotates because of that?

She's our little girl and I love her!! Happy 2 months Kailey!!

Follow-up Doctor Visit

Colin had a follow-up visit with the doctor today to "remove" the special dressing that he put on during surgery. He was supposed to use dressing that was basically guaze, but he was concerned that with Colin's age and size, the dressing wouldn't stay on long enough. Last minute, he decided to use this special stuff that resembles "second skin". When the doctor took a look today, he said the dressing had already fallen off and we didn't even notice. He was happy with Colin's progress because he said there was no swelling or bleeding and it looked as good as it could look two days post-surgery.


I think Colin is just about back to his normal self again, despite the fact that his eye teeth on the bottom are starting to get ready to poke through. This poor guy can't catch a break! I'm guessing that's why we are essentially hitting a plateau with Colin's achievement of skills. I can't say I don't blame the kid, but I liken the feeling of the plateau to coming off of a really great vacation. On these vacations, you have an unbelievable time and you don't want to see it end. When you get home, you feel kind of blah, like you are missing out on something. It's like this for a short period of time until things start to pick up again like a great day here, great day there, etc. I think we are in that blah period, but I'm sure things will start to pick up again soon. Our summer vacation is right around the corner. I'm not going to lie though, I can't wait to see Colin walk into my arms all by himself...

Since the doctor gave the ok to take a bath today, Colin did not waste any time. Do you think he felt like he was missing out on something? When I put him in the tub I thought I could almost here him sighing "ahhhh".

My favorite part of bath time tonight you ask? When Colin stuck the "O" on the thing for the bath tub drain and cheered and cheered himself on. I had turned around to get his towel and quickly looked to see why he was cheering. HYSTERICAL.

Doesn't he just look so proud of himself?

Checking In

Hi guys! It's Colin again! I just wanted to let you know that I felt much better today! My Mommy and Daddy were really surprised this morning when I woke up at 7:15am, much later than I have been getting up lately AND that I slept through the night. I was my normal cheery self except that I wasn't quite ready for Mommy to get me out of the crib. I made her wait until I was ready.

My friends Jorie, Liam and Kaia came over to watch me and Kailey and I had so much fun playing. I didn't complain once all day, ate my whole lunch and took a nap. When Mommy got home I started to get a little cranky, but I was just a little tired and sore. My "area" is black and blue and swollen, but despite that, looks much better than it did!

I just wanted to say thank you for all of your prayers and encouraging words. Love you!!

Surgery Follow-up

First, I would like to tell all of you Mommys out there who have had to endure open heart surgeries and other major medical issues that have involved countless minutes waiting for your child to come out of the OR that I commend you for your strength. I know that most of us do what we need to do when put in difficult situations, but it was hard to hand my baby off to the hands of anesthesiologists and doctors and then watch him get wheeled into recovery in his little gown with wires in the little crib hospital bed. I think I handled things much better than I expected since I tend to be on the emotional side.

We got to the hospital at 7:30 am and after doing the paperwork at check-in, we were taken back into the little area where he was "admitted" and where everyone spoke with us about what was going to go on. I immediately felt a load lifted after talking to the anesthesiologis because he addressed Colin having Down Syndrome and the neck laxity issue before I even had a chance to ask any questions involving this. He told me that although we don't know if Colin has neck laxity, he would be handled extra carefully when under anesthesia because of the potential for it. Since Colin has not had any other more serious health conditions, he would be like any other little boy under anesthesia.

While we waited, Colin was able to watch his favorite show Mickey Mouse which kept him calm and relaxed for at least an hour. We played ball, blew bubbles (how cool is that they we were allowed to blow bubbles in there?!), attempted coloring and sang songs. In all actuality, we waited more before the procedure than the procedure and recovery combined! Although Colin was a bit hesitant to be handed off to a stranger, he did really well as we watched him being walked away into the ER {sniff.}. I had to laugh to myself though because the nurse and anesthetist debated whether or not Colin should walk or be carried back there! Ummm, yeah, he's not quite walking yet...

You'll have to excuse the quality of these pictures as they were taken with Chris' phone since I forgot the camera...

Here we are singing Colin's new favorite song these days "Monkeys jumping on the bed". It's a great time-killer...

Hanging out looking so cute in his hospital gown...

Getting LOTS of love and attention before leaving Mommy and Daddy...

Trying to take off his hospital bracelet...

Watching Mickey on his very own TV...

He was such a good little boy for the long period of time we had to wait before he went back...

Snuggling with Daddy...

Once Colin was wheeled into the recovery area he immediately started to wake up (which they were hoping he would have slept longer to let the effects wear off a bit). They thought that if they could get him into my arms quick enough, he might fall asleep, however he was just crying and crying in this hoarse sad cry. He needed to drink a few sips of a clear fluid in order to leave and amazingly, despite our best attempts previously, he drank the whole cup of apple juice through a much wider straw than he was used to. I guess he was thirsty! He cried and thrashed a bit until we were given the OK to leave (not very long after he got in there since he was able to drink) and then promptly fell asleep in the car.

We were expecting him to be uncomfortable and mopey when we got home, however, he was up to his usual antics crawling all over the place and playing with his toys. He ate a small lunch and we attempted a nap but it just wasn't happening. About an hour ago he just started crying again and we figured his pain medication was wearing off. I took him with me to the pharmacy to pick up his prescription (thank you drive thru!) and he immediately fell asleep in the car. I transferred him to his crib when we got home and he has been sleeping since.

He's such a trooper!! Thank you so much for all of your support and prayers!