31 for 21: Day 22 Measurements

There's no test score that will ever measure the love in this little boy's heart.  Today when I needed it most, he showed me exactly that.  

 

31 for 21 Day 21: More on Great Grandparents

I have been very blessed to have had most of my Grandparents around for my entire life.  Growing up, all of my Grandparents held very important roles in my life and I saw all of them regularly.  I have very fond memories with all of them and have been so lucky to have had them be a part of so many of my life events up until this point.  This past weekend when Cody was baptized, my Grandma (88) and Poppy (91) from my Mom's side of the family were there and were able to spend some time with Cody.  Four generations (my grandparents, my mom, me, and my children) were in the same house this weekend. 

 

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I am so thankful to have had them all a part of my life for as long as they have been!

31 for 21 Day 20: Cody's Baptism

After Chris and I had been together for a few years, we had had a discussion about trying to find a church locally that we could maybe start attending. When I was growing up, I attended a church every Sunday that both my mom's side and my dad's side had been going to for many years.  It held many years of weddings, funerals, Sunday School, confirmations, baptisms, and the like.  My grandparents lived in the town where the church was so we always went to their house for lunch after church each week.  Chris also attended church regularly growing up but both of us had gotten away from it for some time because of college and moving away.  After we had that discussion, we decided to try out the "church on the hill" that was close to his apartment on Christmas Eve morning (it was a Sunday that day) and it was so beautiful and we enjoyed it so much that we started to attend regularly.  At the time, we had been planning on having our wedding ceremony outdoors, but started to have a different feeling after we started attending.  Because of that, we decided to switch and ended up getting married at the church.  From that point forward we became part of the church family and have had each of our three children baptized there. 

 

This Sunday was a beautiful day and was made even more so because of the church service that day. 

 

What made it even more special was that our pastor included Colin and Kailey in Cody's baptism by having them assist him with dipping their hands and laying them on Cody's head.  They were so proud to help and Cody was really good during the whole thing (especially considering how much water they got on his head). 

That day I was particularly moved by the sermon and it was very fitting to Chris and I considering it is also Down Syndrome awareness month.  Our pastor described baptism as a symbol and declaration to who we are and what is important in our lives.  He described how the world names us many things whether it be based on a disability, rich, poor, young, old, etc. but who we are is truly at the heart of each and every one of us. 

It was a beautiful day for a beautiful boy and we are very grateful for our families and most especially, our church family for making it that way.   

 

 

"And a voice from heaven said, "This is my son, whom I love; with him I am well pleased."

Matthew 3:17

31 for 21 Day 19: Feeding Therapy Progress

It's been no secret through the years that Colin has had difficulties when it comes to eating.  When he was a newborn, he had a lot of difficulties sucking on the bottle so we had to count every ounce that he was eating.  He actually did pretty well when it came to eating cereal and pureed foods but then the real difficulties started when we started trying to introduce table food.  The reason why the difficulties started was because of the low muscle tone in his mouth.  Since it was hard for him to chew, he avoided eating foods in which he would have to, so it was difficult to get him to try new things.  When he was over a year old, we started seeing a feeding therapist at a clinic in North Jersey and while it had a great reputation, it wasn't a great fit for us.  We took some time off and then started with a feeding therapist locally and we have seen so much progress since Colin first started working with her (well over a year ago now).  Her approach is not forceful but she definitely pushes him and she is also loving but knows how to get him to work.  

 

 

 

Most recently, Colin's therapist has made a lot of progress in getting Colin to eat a sandwich.  It has been almost a 2 month process of working with the sandwich once a week.  The hierarchy started with at first getting him comfortable with it being on the table and then eventually working up to getting him to take a bite.  She uses "comfort" or "reward" foods after each bite (squeeze yogurt and fruit snacks) and then continues to push him to eat as much of the sandwich that he will tolerate.  She also uses a lot of singing because he loves it so much so it is something he will work hard for.

Just this past week, she called me in to observe and show me that Colin is now at the point that he will pick up the sandwich himself and eat it independently (which he is SO PROUD to show us).  He ate an entire half of a sandwich and aside from occasional assistance, he mostly did it by himself. 

 

The goal now is to try and incorporate it at home or at school (which has been a challenge for me).  When I try to incorporate it at home I get a LOT of resistance because all he tells me is that he doesn't want it.  This past weekend I got him to willingly take one bit all by himself but then he wouldn't do any more.  We will keep working though and hope to see even more progress as time goes by!

31 for 21 Day 18: 2015 SONJ Polar Bear Plunge

Every year since Colin was just under a year old, we have been participating in the Special Olympics of NJ Polar Bear Plunge.  Our involvement in the Polar Bear Plunge began after Colin was born when our very close friends Jorie and Zach came to visit Colin in the hospital.  At the time, Zach had just participated in the 2009 plunge, one that I had coincidentally gone to watch (and thought he was CRAZY for doing!).  Jorie had the idea to create a team in honor of Colin to participate and when the plunge registration opened in September, CAT Crew was born! 

 

 

Each year, our team has grown and expanded as family and friends join again but bringing with them new plungers who are excited to join the team.  It's always a very emotional day for Chris and I to see so many people come together in honor of Colin and all of the participating members of the Special Olympics as the money raised supports many programs that athletes like Colin are involved in.  

 

 

Last year was a particularly special year for us as several members of Colin's "team" from his preschool program plunged with us.  It meant so much to Chris and I to have so many people there in support of Colin.  

 

 

On our 6th annual Polar Bear Plunge, we are looking to make this even bigger and better than it has been yet.  We have raised over $150,000 in our 5 years of participation for the Special Olympics and would love to surpass that even more this year.   Even better, we would love to see our team grow and have YOU join us!

 

 

If you are interested in joining our team this year, please click on THIS LINK which will take you to the registration page for the Polar Bear Plunge in Seaside Heights .  From there, click "I agree" and then on the next page "join a team" and then select CAT Crew! 

Event Information: February 21, 2015 in Seaside Heights, NJ
Time: 1pm

Click the link above for more information! 

 

31 for 21 Day 17: Great Grammy

I sat down just now to catch up on this post and started looking for certain pictures from the Polar Bear Plunge from last February when I stumbled across this picture in the folder.  Seeing it made me quite emotional as we just lost my Grammy back in June.  It was hard for my family because up until a few months before her passing she was actually quite healthy and as many people would describe her, spunky. 

 

I've always had a very close relationship with Grammy and was extremely grateful for the support that she has always had for me through all of my years of growing up, and then even more so into my adult years.  After Colin was born, we had quite a few emotional conversations discussing his diagnosis.  She had a hard time with this when she found out but being the religious person that she was, knew that Colin was a gift given to Chris and I from God.  From day one on, she called him "our little boy" and was proud to tell all of her friends about her great grandson who had Down Syndrome.  Despite the fact she was in her late 80s, she always read the blog on a regular basis and would call her friends from the complex into her house to watch the latest "Colin videos" or to show them new pictures of him that I would put up.  She loved to brag about all of the things that he was doing.  She loved Colin so much and I am so thankful that Colin and Kailey had the opportunity to know her, even for the short time that they did.  The last thing she ALWAYS said to me was "I'll be praying for Colin, Kailey, Chris and you" and "I love you". 

Love you and miss you Grammy...

31 for 21 Day 16: Writing Practice

One of the challenges we have been facing with Colin in school is his attention span and patience to sit down and complete assignments for sustained periods of time.  One of the reasons for this is because there are aspects of each assignment that are challenging for Colin whether it is because it requires writing to complete the assignment, too many tasks for one assignment, etc.  What we have been trying to brainstorm is ways to cut down each assignment so that the true focus is only on the one main task for each assignment.  For example, if it requires writing in order to complete but it's not time to practice writing, then an alternate way to show answers and complete the tasks should be done (bingo dotters, stickers, etc.).

 

Because of the low muscle tone in Colin's hand, it is difficult for him to hold the writing utensil and write for long periods of time.  Even something simple such as coloring has been a challenge, however, we have been finding that Colin's interest level on completing these types of activities has been improving.  Over the weekend last week, Colin was really into practicing tracing his letters and numbers and it was sustained for a long period of time. 

I found that if we did some gross motor activities to start (jumping, running, high fives, etc.) then he was ready and excited to sit down and work.  I would give him a break to get up and jump again (we were jumping off of the fireplace - it's a low ledge).  He was also motivated to sit on the floor instead of at a table so that also helped to keep his interest level as well. 

We are also brainstorming with the occupational therapist at Colin's school ways for him to complete writing activities that may be motivational.  One way is to have him stand up at a wall to write so that he is working against gravity (a way to help build hand strength) while completing the task in a way other than sitting at the table. 

I have also noticed that when a task becomes slightly easier for Colin, his confidence grows as well which helps to improve on his interest level.