Angel

A special little boy became an angel today as he was called home. Carter, from the blog Team Carter passed away today at 12:45 pm.



Carter's mommy, Heather, posted this on their blog today: He grew his wings very peacefully in his Mommy and Daddy's arms.

They have been such a strong and inspiring family on this journey...

If you have a moment, please stop by their page at http://www.teamcarterjay.com/ and send some love their way.

"Perhaps they are not the stars, but rather, openings in heaven where the light of our loved ones shine down upon us and let us know that they are ok."
- Eskimo Legend

Look at Colin!!

Today was a family day! We all played hooky from work and school for Colin's appointment at the Children's Hospital of Philadelphia Trisomy 21 program (more on that in another post) but to summarize, we were so happy with it there and have officially made up our minds to discontinue our visits at the ITAP program locally. Those visits are every 3 months and as you have seen we have been very unhappy. So, we are switching to this program which has follow ups every 6 months.

Anyway, my softball team at school was playing the South Jersey Group III state sectional champs close to Philly so we went to the game on the way out. Colin was in such a great mood and having fun in the shade at the game.

What you are about to see has never happened before when Chris or I have tried. He has done it for a VERY short period of time with Miss Kathy, but never for us...we were thrilled to say the least!!



What fun it was to watch that moment!

Lots of updates!

Here are our long overdue updates that are going on in our household right now! Be prepared, it's a long one!

* Moving *

We are moving so things have been a little bit overwhelming for the past few months, but most especially, the past few weeks. Colin has been a trooper and we have really tried to make sure we spend enough time with him and do a lot of the packing work after he goes to bed. We have also had friends and family spending time with him as well while we do some things. While I am excited to begin the next part of our life in our new home, I am sad because there has been so much that has happened here! Chris and I got married, we found out I was pregnant, Colin was born, and we found out about DS while sitting in our living room as well as so many other highs and lows. It's just time to move on and take those memories and store them in their special box...

* IFSP Meeting *

We had Colin's 1 year IFSP (Individualized Family Service Plan) meeting last week. We are always nervous when it comes to discussing the things Colin can and can't do, however, since we have grown so much since the 1st meeting AND we have a great team of therapists/coordinators, it's actually OK! The difference between this meeting and the follow up visits at the ITAP program is that Colin's accomplishments over the past year are celebrated (especially when you can check off most of the goals that we had set forth for the year) and then emphasis is placed on a new set of goals for the upcoming 6 months to 1 year as opposed to highlighting Colin's weaknesses with less emphasis on the things he CAN do. We were proud to see how far Colin has come (as well as Mommy and Daddy!) and look forward to working on our new set of goals.

Colin's weeks will now look like this:

* DI (Developmental Intervention): 1x per week
* PT (Physical Therapy): 2x per week

* ST (Speech Therapy): 1x per week

There was a little bit of stress involved because we are now responsible for a copay per hour of therapy. It was a lot higher than we had expected and planned for so it caused for some concern with the new house and some other things going on at the same time. As always, we will figure it out, it's always just a little overwhelming when you get hit with it.

* Physical Therapy Update *

We have been working on lots of things with Colin that include going from sitting to tummy, side-lying to sitting, hands and knees, propping, kneeling against the couch, pulling-pushing, standing (mostly, just trying to get him to bear weight on his legs) and army crawling. Colin has been working really hard and it's showing, just in baby steps (hey, it's better than nothing!).

Last week, Miss Kathy spent a lot of time working on getting Colin to bear weight on his legs while up against the couch. She was trying to get him to use his hands and arms to prop on the couch while doing so. It was really difficult for Colin and he did a LOT of complaining, however, the result was the ultimate reward! She had her hands placed just so on his legs that after a little bit of groaning/crying, he extended his back so that he was standing straight up all on his own! It was so exciting! Daddy got teary-eyed, Mommy got teary-eyed, and then Miss Kathy got teary-eyed, and then Colin was just flat out crying because he was so exhausted. What a great session!

(Suggestion: you might want to pause the music at the very bottom of the page to hear the videos better)

In this 1st video Colin was kind of getting the idea of standing with Miss Kathy's help in pushing his body against hers for support.

The 2nd video is the BIG moment...you can even hear my gasp (I still get teary-eyed watching it)

* Developmental Therapy Update *

We had a fun session with Colin today as he is really starting to pick up the concept of cause and effect. He is also starting to make some new sounds, just not consistently, so I look forward to meeting with the speech therapist for some new things to work on (Miss Darlene has been great though!). It has been fun watching Colin explore his toys and play with them in a different way!

* May Grandparent Birthdays *

I will admit, I have been slacking in this department due to everything that is going on! Three of Colin's 4 grandparents have birthdays in May!

1st was Colin's Grandpa (Chris' Dad) on May 16th!

Dear Grandpa,

I love you very much!! I always have fun playing with you!

xoxoxoxox
Love,
Colin

2nd was Colin's Nana (my mom) on May 20th (I was basically born on her birthday since I was born at midnight...but she got to pick which day she wanted for me and I ended up with my own birthday!)

Dear Nana,

Thanks for being such a great Nana. I love you SO much!
Love,
Colin
xoxoxoxoxoxo

3rd will be Colin's Gammy's birthday (Chris' mom) on May 30th

Hi Gammy!

I love you and can't wait to see you again soon! Thanks for loving me! Love,
Colin
xoxoxoxoxo

* Aunt Kimmy's College Graduation *

Last week Aunt Kimmy graduated from college! She worked really hard while she was there and even had some challenges and set-backs along the way. She perservered and we were honored to be a part of her special day! Congratulations Aunt Kimmy!

Colin dressed very nicely for the big day and was such a good boy during the ceremony despite the fact that it was his lunch time!

He loves his Aunt Kimmy and told me that he was so proud of her!

It's always nice to have us all together, especially now that Uncle Timmy lives in North Carolina!
My parents now have 4 college graduates!

* School Picnic *
Colin had his 1st school picnic on Saturday and he had so much fun playing with his friends! We sat with Tommy and Allison and I got to have adult conversations with their mommy's and daddy's (usually it's conversations at school with their kids...lol). Colin and Tommy were having fun on the swings! It was a beautiful day and reminded me how much I love Colin's school!

* End Note *
I thought I would end with something fun. We just dug this out (it was Daddy's "toy") and Colin loves it!

Just wanted to tell you...

Just wanted to take a quick second to say that we are still here! We are so overwhelmed with moving and packing right now and waiting to hear for our exact closing date. Most of our stuff has been moved into storage and we are living on bare essentials in our home.

But...I wanted to tell you that there is so much to tell you!

When I have a moment to take a breather today or tomorrow, these are a few things that I am going to tell you about:

* Moving: Despite feeling tired and stressed I am also feeling sad! This was a home that contained a lot of life's moments!

* Colin's year IFSP meeting

* May Grandparent birthdays

* Aunt Kimmy's college graduation

* Big PT strides!

* Colin's school picnic and spending time with his friends

So, for the time being, I will leave you with this...

This is what I get to come home to almost every day and I am so lucky! I get teary eyed looking at it because it makes me so happy!

And this is Colin's "funny face" he is making these days to make everyone laugh! Just makes me smile!!

Happy Birthday...to me! :)

I am looking forward to spending my 29th birthday with these 2 special boys tomorrow! I love you guys!

From Chris:

Happy Birthday to my dearest Kelli… my wife, the love of my life!!

Words can never fully express how much I love you, and how important you are to me and my life!! I love you – and Colin – with my entire being and our worlds are 100% better because you are a part of us.

Thank you for all that you do to keep us strong (and clean) and moving forward as a FAMILY…

I wish you the best birthday possible, and always know that Colin and I will be here to love and cherish you for all the days of your life.

Happy Birthday Beautiful!!!!

Love, me…

...and from Colin!

Happy Birthday Mommy…!!

Daddy and I were talking earlier and he mentioned that it might be a good idea to write you a note for your birthday, so here it goes…

You are the greatest Mommy ever! And I love you with all of my heart! Thank you so much for always being there for me and loving me – I promise to always return the favor!!

I hope you have a very Happy Birthday Mommy – you truly deserve it!

I love you always… Love, Colin

If You Have a Minute...

Please stop by these blogs and let the families know you are thinking about them :)

A few of Colin's blog friends need your thoughts and prayers right now...

Carter at Team Carter Jay is undergoing surgery tomorrow which will take about 8 hours and will have 3 different surgeons working on him while also getting some testing done. Please take a minute to visit their blog and let them know that you will be thinking about them and/or praying for them tomorrow!
Please continue to pray for Ella at Sweet Ella Grace as she is fighting her battle with leukemia. She had a successful surgery yesterday to put in a central line so that she will hopefully not have to be stuck with needles anymore for blood draws and administering medications.

One of the new adorable kids we have been following is Taylor at One Day at a Time. She just had heart surgery and also just contracted a stomach bug so she is back in the ICU for the time being so that they can get her electrolytes and some other things back on track. Taylor's Mommy Erin just wrote this on her recent blog post: "We're hanging in there..it's been a roller coaster. The Lord is our strength. (I am also blessed with a wonderful husband.) Love, Erin"

We are thinking about all of you and sending our thoughts and prayers!! HUGS!

Colin's Got Moves!

One thing we have been noticing more and more about Colin's interests is music. He LOVES bopping his head to the beat of a song...any song.

Prior to our great day yesterday with Adrienne and Bennett and the rest of their family, Colin was having a great time rolling around the living room floor tearing apart my magazines (despite the fact that he had MANY of his own toys around him) and dancing to the 80s and 90s stations we had on the TV. He is so funny when it comes to "dancing" to the songs...you can tell how much he loves music!

In this 1st video, watch what happens when the music slows down for a second in the song. He looks up at the TV as if to say "hey! what's happening to the beat?" and then as soon as it gets fast again, he starts bopping his head.





In the 2nd video, you can see that he is attempting the army crawl to get at my magazines! He is trying to do it more and more and it's funny because you will hear him grunting once and awhile trying to move.



Finally, in this last video, Colin is bopping away until the song switches and then he looks up to see when the next song is going to start. Mid-way through the video he is just staring at me and then he starts dancing again. He's so funny (and knows it too!)!

Meeting New Friends

After an exhausting and stressful day yesterday with beginning the move into storage, we had a fun and relaxing day today at the beach meeting new friends!!

We got to meet Bennett, Ainsley, Harper, Adrienne and Mike from Our Unexpected Journey at the beach today! It was such a fun day and I was so happy to have the opportunity to meet you guys in person! I got some fun pictures from the day!

The boys checking each other out...

Look at the cool dudes at the beach!

They quickly became friends! I love Colin's hand on Bennett's shoulder. It's like he is saying "meet my new friend!"

These lil' boys are such cuties!

They have a mutual love for paper (thanks for the adorable shirt Adrienne! I can't wait to have Colin model it!)

Adrienne and I with our boys...

Something must have been funny!

Colin and Bennett were so cute together and enjoyed their day at the beach together!

Thanks guys for a great day! It was so much fun meeting all of you!

What do you think?

...about this picture?

How did Colin get from a position perpendicular to this one, where his head was on the right side of the picture, his body at the bottom of the picture, and end up this way when he is not crawling or scooting on carpet?

...just maybe he is?

We laughed over this one! I put him down just as I had described, walked out of the room for 5 minutes and when I came back he was like this! He was just looking at me like "hey mommy!"

I love it...but I wanna know...how did he get like this?!

Small Changes

One of the things I always expected when I started this journey was that I would see BIG changes happen with Colin, especially in his gross motor development. I just kept thinking early on that he would get to a point where all of a sudden he would roll over, or all of a sudden he would sit independently, or all of a sudden crawl. Over time I realized that while achieving milestones is a BIG thing, they don't necessarily happen right before your eyes in an instant.

I know that all children have adjustment periods when it comes to change, especially with solid foods, switching to a different type of cup, milk, etc. Early on I just figured that it would just happen when we wanted to switch Colin to solids and when we first tried cereal, it did happen quickly. When we started with the pureed fruits and vegetables, he did very well. However, as we started to get into foods with more textures, our obvious difficulties began.

I think that one of the most frustrating things we have dealt with is the feeding issues. When we started with textured foods with Colin, he would blow raspberries because he wanted nothing to do with it. He always found a way to spit chunks out. We are still struggling with self feeding.

But....lately, there seems to be light shining through on this! Instead of seeing a big change happen all of a sudden, I have been noticing lots of little changes that have been taking place when it comes to feeding.

...slowly over time, the raspberries stopped.

...slowly, he is starting to accept "table foods" like mashed potatoes, sweet potatoes, small pieces of chicken or meat, crushed up veggies, cheese, fruit, etc. We still need to give baby food to make sure he is getting enough calories, but we are able to give less and less.

...slowly, with assistance he is putting things in his mouth like pretzel rods, and the spoon with some food on it (with LOTS of assistance), fudge pops (only a tiny bit...that he wants to be hand fed! ha!).

Instead of trying to see a big change, I look harder and I am seeing his small accomplishments. I remembered that I had to pull back a little bit and look a little deeper and voila! Things are changing in the right direction, just a little bit at a time!

In the 1st video you will see that Colin is keeping the food in his mouth (mostly) which is a big accomplishment AND that he is assisting me put the spoon into his mouth...

The 2nd video is just his giggles for fun!

PossABILITIES

Shortly after Colin was born, my former boss Doug Padron, the head atheltic trainer at Monmouth University, approached Chris and I (Chris also works in the athletic department there) about an idea he had. Along with one of the other athletic trainers, Vanessa Christensen, they wanted to organize a day of "Playing with the Hawks" where young children with Down Syndrome and other disabilities could come out and spend time with the Monmouth University athletes.

A year later, that idea became a reality.

On Saturday May 8th, Monmouth University peer leaders, in conjunction with the Family Resources Associates, Inc. in Monmouth County hosted the PossAbilities Walk & A DAY OF SPORTS PLAY with the HAWKS. The day started with a 1 mile walk around the track with all of the families of children with disabilities. During this 1 mile walk, we met so many new families of a wide variety of age ranges. These families gave me such hope as they shared so many of their children's accomplishments!

Later, the Monmouth University athletes from different sports teams, had stations set up and the children had the opportunity to play with the athletes! They were having such a great time! We mostly spent time with a few of the families with young children with Down Syndrome. They told me about some of the groups that they have in the area and it sounded like fun!

We felt honored to participate in such a great day and were proud that Doug and Vanessa got this program up and running for all of our children! It was amazing to see the college athletes reach out and spend time playing and teaching the children as well. There are so many possABILITIES for Colin and all of his friends out there!

Some pictures from the day:

Colin looking cool in his eye black like the football players wear

Colin and Doug

Colin was really excited to partipate in the walk, especially after he got his eye black!

He had such a great time walking around the track meeting new people!

Some other walkers on the track
Colin's new friend Evan! Isn't he a cutie!?

Part of what Chris' job entails is sending out press releases regarding Monmouth University athletic events (specifically, women's soccer, men's basketball, and baseball, plus a whole lot of other things). One of the guys that works for Chris came to the event and wrote the following that was sent out as a press release...thanks Eddy!

FOR IMMEDIATE RELEASE
May 10, 2010

PEER LEADERS AND FAMILY RESOURCE ASSOCIATES TEAM UP FOR ‘POSSABILITIES WALK’
Event, which featured a Play Day, was held on Kessler Field on Saturday

WEST LONG BRANCH, N.J. – The Monmouth University Department of Athletics Peer Leader Program and the Family Resource Associates (FRA) of Shrewsbury teamed up to help put on the ‘PossAbilities Walk’ and ‘Day of Sports Play with the Hawks’ at Kessler Field this past Saturday.

The event, which featured a mile walk with the student-athlete Peer Leaders and subsequent morning of different activities, such as soccer, kickball and an obstacle course, drew many local families and volunteers.

“We’re really excited because when we were approached by the Monmouth University student-athlete Peer Leaders we thought it was wonderful because we need ways to help bridge families together,” said Nancy Phalanukorn, Executive Director of the FRA. “When the children are young, they often only see each other in the home, and through events like this we want these families to come together and meet. All of the different Monmouth student-athletes came out and made this happen and it gives the kids a whole different feel.”

“Our goal through this event was to not only help the FRA raise money, but also to increase awareness both in the local community and on-campus,” said Associate Athletics Director for Sports Medicine and the Peer Leader advisor Doug Padron. “The student-athletes represented themselves and their teams very well at the event.”

The day began with a mile-long walk around the University’s E. Murray Todd Track at Kessler Field to help celebrate the abilities and accomplishments of children and adults with special needs in the community.

“It’s very rewarding to give back to the community and be able to put a smile on a kid’s face,” said Bryan Meredith, a junior on the men’s soccer team. “This event gives the kids a chance, at least for one day, to feel like a Division I athlete, and I am honored to be a part of it.”

After the walk, the student-athletes then broke into different stations, such as soccer, football, basketball, baseball, golf, tennis, kickball, on obstacle course and freeze dancing, and took turns playing with the kids.

“For me, I get to a play a sport and be a Division I athlete, but these kids don’t get to do that, to be a part of that is awesome,” said Olivia Salata, a sophomore on the lacrosse team. “We maybe take it for granted some days that we’re athletes, but I see these kids and I realize I have a great opportunity and I want them to have as much fun as I do every day.”

The FRA is a New Jersey non-profit agency located in Shrewsbury, helping children, adolescents and people of all ages with disAbilities to reach their fullest potential. FRA connects individuals to independence through modern therapies and advanced technology. Acknowledging the powerful influence of the family, we remain committed to them by offering both support and education.

FRA assists individuals of all ages who have developmental delays or disAbilities as well as acquired disAbilities. FRA provides home-based early intervention for infants, therapeutic recreation programs and assistive technology services, along with family and sibling support groups.

For more information about the FRA, visit their website at http://frainc.org/.

Prayers Needed for Ella!

After a long weekend of being away from my blog reading, I discovered today that Colin's sweet little blog friend Ella was diagnosed with Leukemia on Friday. This is a scary word for anyone to hear, so I ask that you please pray for Ella and her family as they begin their battle with this disease.

To the right, you will find that I have added this button for Ella that will take you to her page when clicking on her picture.



We are thinking about you Ella and know that you are such a strong little girl. Many hugs from our family!

Happy Mother's Day!

Happy Mother's Day to all of you beautiful and strong mothers out there! You inspire me!

...and most especially, Happy Mother's Day to my mom who has always been there for me...

...and Chris' mom who has always been there for him!
Colin is so lucky to have such wonderful grandmas!

The "Look"

Colin has been giving this look for awhile now where he drops his chin towards his chest and then looks up with his eyes. We always thought initially that it was a "stern" look he was giving to us after seeing us do it to him here and there. It kind of died off for awhile and then resurfaced this week in a funny way!

Colin always tries to make us laugh whether it be by making silly faces or making noises, etc. This definitely comes from his Daddy because he enjoys making people laugh as well. After Jen had picked Colin up the other day, the 3 of us were hanging out playing when Colin started doing things to make us laugh. He started giving the "look" and when we would start to giggle, he would laugh because he thought he was so funny!

You can see that here:



...and here: (also notice him saying Mamama!)



His little personality is so much fun to watch evolve! He really does crack us up!

Playin' Hooky with Daddy

Sssshhhhhh.....

...someone got picked up early from school today by Daddy, but don't tell anyone! Since Colin wasn't expecting the early pick up, this is what Daddy found...

...But he sure was glad to see his Daddy! I got some great pictures after they got home of their day of hooky!

I got this picture with a message that said "hurry home Mommy!"...

Apparently Colin told Daddy to send this one of Colin saying "hi!"Even though the day of hooky was fun...Daddy still made Colin work on self-feeding with a cookie...

However, it didn't go so well...(This is Colin actually pushing the cookie away)

...Hmmmm, close!!

Hope you guys had fun!

Developmental Therapy

Miss Darlene came today for developmental therapy and overall it was a pretty good session. Colin was excited to start his day, especially since he was wearing one of his new outfits!

Since we had to say goodbye to Daddy this morning for the day, we decided to sit outside and wait for her to get to our house. We played with bubbles and were working on sounds such as "Buh Buh Buh" for bubbles and "pop! pop! pop!" as Colin watched the bubbles pop around him. At one point, Colin started babbling as though he was trying to say what I was saying.

He was nosey though...one of our neighbors was walking into his house and Colin decided to watch him instead of the bubbles. We are working on a couple of things with Miss Darlene including imitation such as singing songs, playing with the Little People Farm (making animal sounds), putting his fish in his fish bowl (a toy that plays songs when you put the fish in it), etc. He is getting pretty good at following along when singing "If You're Happy and You Know it..." and "Pat-a-Cake". Colin was very happy today and enjoyed most of the activities we were doing with him.

At the end we decided to work on self-feeding since Colin is really struggling with this. We put him in his high chair and took out the cool whip to play with. Colin immediately put his hand in it but when we tried putting his hand to his mouth (after having a taste and loving it) he started complaining. We tried giving him a taste with the spoon and then giving him the spoon, but he started really getting mad because we wouldn't feed it to him. He would open his mouth wanting the cool whip, but when we tried to make him do it he started crying his angry cry. It was funny, but not funny...

...so we called it a day since it was the end of the session anyway. We decided brainstorming on MORE foods that we could try to motivate Colin to self feed so I have quite a list to try out.

Tonight, we were hanging out with Auntie Jen (thanks for picking Colin up!) and we were eating pretzel rods. I gave Colin a pretzel rod to play with and he started sucking on it to get the salt off. It became a game that we enjoyed of him feeding himself and then trying to give me some! Baby steps!

Lovin' Life!

This is our cutie pie during a stroll in his wagon! It was so beautiful out and we were enjoying the nice weather on Sunday! When my parents bought Colin the wagon, they also got the umbrella to go with it which was perfect in the sun! I didn't have to worry as much about the sun...and it just made him look sooo cute!

Air Guitar

Click here to view these pictures larger

Last night we had dinner with Leslie and Simon. We tried putting Colin down but he was so unhappy to be away from everyone that I went and got him. We let him stay up a little bit past his bed time and he was rocking out to some music. Daddy and Colin were playing the air guitar together...while sitting on their dining room table!

...at least he enjoyed himself!