I Love you Because You're You!

I was reading this story to Colin the other night and I couldn't believe how fitting it truly is to him and his specialness!

I Love You Because You're You

by Liza Baker & Illustrated by David McPhail

I love you when you're happy and grinning ear to ear.I love you when you're sleeping and want to snuggle near. I love you when you're silly and dancing 'round and 'round.
I love you when you're frightened and hear a scary sound. I love you when you're bashful and hide behind my knee.

I love you when you're brave and from my arms you flee.
I love you when you're curious and searching here and there.
I love you when you're proud, your head held in the air.

I love you when you're sick and need to rest in bed.
I love you when you're frisky and standing on your head.
I love you when you're sad and need a kiss and hug.

I love you when you're playful and rolling on the rug.
I love you when you're angry and cross your arms and pout.
I love you when you're wild and yell and scream and shout.

I love you any way you feel, no matter what you do.

I love you any way you are.

I love you because you're you!!

Lots of Little Things

Things have been a little crazy over here (hence the lack of updating) with our house selling/buying process. This post is the culmination of lots of little things.

We are very happy because Colin will suck up milk from the straw. However, most of the time he will suck up the milk and let it dribble out of his mouth instead of swallowing (it seems to depend on his mood). We have been trying at almost every meal time to get him solely use the straw, but we are striking out. I've always had it in my head that I wanted the bottle to be done around a year, but we will keep working at this.

Meal times are a big struggle, still.

I am really trying to transition away from jar foods, but there are not many "table foods" that Colin likes or will tolerate. The other night we had chicken, sweet potatoes and veggies, so I sent small pieces of that with Colin to school the next day and they said he did really well with it. Looks like he will be getting that meal pretty often! In addition to this, we can't get Colin to self-feed. I have even tried putting chunks of ice cream (which he LOVES) on the tray in front of him and helping him put it to his mouth. He just won't do it himself. Any suggestions in this department?

(I certainly can't say that he's not happy, but this is AFTER attempting to put egg in his mouth. You should have seen his winey face while I was trying to do that!)

On to happier things, Colin loves sucking face! This makes me giggle saying this, but he just loves gnawing on my chin (but really anyone who gets close!). This may be due to the fact that he STILL doesn't have any teeth, or that he just loves me so. It's cute (but slobbery!)...

Colin loves his daddy. Chris had to work a bunch of late nights last week and Colin definitely noticed. On Friday, at his PT session, we had to stop a little bit early because about half way through, Chris left the room and Colin lost it. He couldn't even be comforted by me, only daddy!
...Colin just gave me a kissy face, melts my heart every time! Off to play!

Running with Colin

One of the things I have always enjoyed doing is running. I started running my freshman year of high school after joining Cross Country. I realized when entering high school that I wanted to join a team and belong to a sport, however, I didn't have any sport specific skills to join some of the classic teams like soccer (thanks to the fact that I was the first born girl and did girly things like dance classes). I kept up with it from then on and have always gone back to it no matter what part of life gets in the way.

One of my favorite things to do with running is road races. After having Colin, my goal was to run in a race with him and that's what we did together this weekend at Monmouth University! The women's field hockey team and Coach Carli sponsored a 5K run for Timmy Passarella, the brother of a former field hockey member who passed away from cancer. I was honored to participate in a great event for my 1st road race with Colin!

We started the day out by stretching together. We needed to get limber for the big race!

Colin was all smiles while we were there (probably had something to do with the whole field hockey team who were all doting on him. He loved it!).

He found a stick and was very excited playing with it...

He was giving the kissy face for someone and I guarantee it was one of the pretty girls!. Side note...all we have to say is "give a kiss Colin!" and he will do so without needing to see a kissy face first! It's a lot of fun!

He couldn't wait to run the race with me!

Chris was such a big supporter of us! He cheered for us and took pictures along the way!

When it was time to start getting ready, Colin got in the running stroller and had the map in case we got lost...This was my view (and support) during the race in case I needed some motivation!

We were such a great team together! I told Chris after the run that Colin has completely changed my mentality when running. I am mentally stronger because of him!

Colin stayed awake during the race (I was surprised!) and was kicking his feet the whole time. I think he really enjoyed himself!

The hardest part about running with Colin (besides the big hill!) was making turns. The front wheel of the running stroller doesn't swivel, so you have to pick the front of the stroller up to make the turn. There were a few times that it was a little rough going around a corner for Colin.

One of the basketball coaches was on my heels the whole time. She really pushed me and kept me going!

I was so proud of myself when crossing the finish line! It certainly isn't easy pushing a stroller when running (especially because you can't use your arms the way you are supposed to). However, I had the biggest motivator with me and he helped me to get a great time!

I was definitely tired afterwards, but happy for accomlishing my goal!

My next challenge is the Save Barnegat Bay 8K (5 miles) in Lavallette, NJ. I can't wait!

ITAP Assessment Update

On the morning of Colin's birthday, we went to Jersey Shore Medical Center for Colin's evaluation at the Infant Toddler Assessment Program. He has been going every 3 months since the initial visit, and this time he was going to be adding on an evaluation by a developmental psychologist.

Chris and I have often wondered why we keep going back since there is always something that bothers us about the visit. In previous posts about our visits, I have talked about the negative ways in which they refer to Colin's development, particulary when seen by the physical therapist and speech therapist.

Every visit involves a series of measurements that are taken including weight (17 lbs. 12 ounces) height (I actually forget this number!), and head circumference (I think it was 44") in a room with the nurse. She plots his numbers on the typical growth chart as well as the chart for "little boys with Down Syndrome". Colin falls less than 10% on the typical chart for all of his numbers but generally around 50% for the Down Syndrome charts.

The visit also includes a stop in the room with the speech therapist and the physical therapist. We have been very unhappy with the PT that we have seen the past few visits because we always feel as though she is repremanding us, does not have much of a personality (especially when dealing with out cutie pie), and does not highlight any positives. She is very negative and her evaluation takes about 2 minutes (literally). The speech therapist also has a 2 minute evaluation. This time the PT that was there had a little bit more of a personality when interacting with Colin, but again, she did not focus on anything positive. Fortunately, we are in a place now where we know that Colin has some difficulties, we know that he has low muscle tone, and we know that he will get to where other children already are. Therefore, we do not need to worry about the things they say.

Also, I'm not sure if you remember from last time about the discussion of Colin's head, but the PT looked at his chart and Colin's head and said "I see he still has a flat head, are you doing anything about this?". Geez lady, some gentleness would be nice. I immediately responded that I had addressed this with the pediatrician and she did not have any concerns.

We were very happy with our time with the developmental psychologist. Her job was to perform lots of different tests with Colin during play activities. Some of these tests were things that Colin has been able to perform well on for months now, and some things were supposed to be above his age level.

Some of the tests that were performed:

Pretend play:

• She took out objects like a cup, showed Colin that she was pretending to drink out of it, and wanted to see what he would do when given the cup. He played with it at first, and then eventually tried drinking out of it!
• She used a small baby doll and got excited about the baby. First, she took out a small comb and handed it to Colin. In my head I was thinking that there was no way he would know what to do with it since we have never used a comb on him. He looked at it for a few minutes moving it around and such and then started combing the baby's hair!! Chris and I were shocked! She then handed him an adult sized spoon which he enjoyed banging on the table. Then, he started taking the spoon and putting the right end to the baby's mouth as though he was feeding it. We couldn't believe that he was doing these things!

Puzzles/Shapes:

• She took out one of those puzzles that contains large shapes and handed Colin the circle. She pointed to where the circle was supposed to go several times telling him to put "in". We have been working on this with Colin with blocks in a box, but he hasn't been able to let go when putting "in". He inspected the circle for a little while and then started tapping the circle shape over the spot it was supposed to go in.

Blocks:

• She had some small blocks in cube shapes and a cup that they were in. She would dump them out several times, put them back in and then dump them out and take them away. She would show Colin the empty cup and then he started looking for the blocks.

Crayons:

• She took out a blank piece of paper and a crayon and handed it to Colin. His teacher told me that Colin enjoys coloring and always knows what to do with it, but I wasn't quite expecting his reaction. He took the crayon and immediately started scribbling on the page with intent, the way he was supposed to. We were so excited!

There were many different little tests that were performed and fortunately it was Colin's best time of the day. He was very happy and social with her (once he warmed up to her) and subsequently, she was very happy with his scoring on the test. What we really liked was that she explained everything she was doing as she was doing it so that we understood what she was doing.

I don't think we need to keep going, but there is something about it that I don't want to let go of just yet. I feel that there are advantages (like seeing the developmental psychologist), but at the same time, some of the things I really don't like include the fact that they are mostly negative and don't give any tips or suggestions. They point out the things that he isn't doing (which we already know), but don't really say this is what you can do. They don't give out literature on the topics, they don't refer us to research or readings of interest, etc. So, we keep going, but we will see how future visits pan out. Right now we know we are doing what we are supposed to and a little extra monitoring doesn't hurt.

Next month we will be visiting the Trisomy 21 clinic at the Children's Hospital of Philadelphia. We have been on a waiting list for months now and are excited to venture out there to see what they have to say.

Happy 1st Birthday Colin!

Happy 1st Birthday to our beautiful little boy Colin!!

Dear Colin,

1 year ago today @ 2:44 pm you entered this world so quickly (Daddy almost didn't make it back up to the room in time!) and stole our hearts! We knew you were coming, but you certainly surprised us with a litle something extra! We were scared, but we loved you so much and we knew that we would do everything to make sure you had all that you needed.

This past year has been the best year of our lives! You are a part of everything we do and you are so loved by so many people! You have the best smile...you smile so big that your eyes get all squinty. It's perfect proof how much you love your Mommy and Daddy...and friends and family!

We love you with all our hearts! We can't wait for all that is yet to come! Thank you for all that you teach us on a daily basis!

Love,

Your Mommy and Daddy

xoxoxoxoxoxoxoxoxo

Like Mommy Like Daddy

On the eve of Colin's 1st birthday, I want to ask you a question...

What do you see when you look at the 3 pictures?

I think Colin clearly looks like his daddy, but when I look at the pictures this way I see a lot of resemblences in both.

...one thing is for sure...we were/are all blondies!

Please take a minute...

...and say a prayer for Micah. He is one of Colin's friends at A Little Something Extra and he is very sick right now. Please stop over at their blog for more information.

He needs our help right now.

Colin's 1st Birthday Party

Wow, what a GREAT day we had yesterday for Colin's 1st birthday party! I was thinking last night after going through all of the wonderful gifts that Colin got how blessed we are to have so many people who are such a big part of Colin's life. I was emotional thinking about our day while looking through pictures because it really was a beautiful celebration of a beautiful life!

Colin took a refreshing nap just before the party so he was ready to go in his new clothes!

He was just like the mayor in his new wagon riding around greeting all of his guests as they arrived!Along his route he even stopped to pick up his favorite chick Kaia!

I was pretty organized for the day and had all of the food ready and coming out of the oven at the start of the party so Chris and I were mostly able to enjoy ourselves. We picked Colin's FAVORITE kind of cake (just like his Mommy and Daddy's)...ice cream cake! We sang happy birthday and Colin just couldn't wait to get a piece!
He really enjoyed his cake. He couldn't even stop long enough to take a nice picture with mommy and daddy!

Every picture I have of Colin and his birthday cake involves him looking at the fork...
Colin had so many of his friends and family there including Logan and his family! These guys are really starting to become great buds!

He had the best seat while opening presents. He loved all of his gifts including the tissue paper and string! He got so many great new clothes and toys! We can't wait to use all of them!

At the end of the day, we got a family picture on Colin's special day! He was so happy!I even tried to get him to show off his new skills on the floor and all he was obviously thinking was, "not now Mom, it's been a long day".

It was a great way to celebrate our favorite lil' boy! Thank you to all of our friends and family for making Colin's day so special!