Thursday, May 28, 2009

Beach Baby!

On Memorial Day, Colin visited the beach for the first time with his mommy, Nana, and Grandad. Unfortunately, Daddy had to work so he wasn't able to come with us. Colin loved to lay free on the blanket and feel the breeze....

Little Boy in a Big Bed!

Colin has graduated to his crib already in his room for the past few days now. He has been sleeping through the night and getting up around 5:30 am to eat and sleeping for about 6-7 hours depending on when he actually falls asleep. He must have known his daddy was gone last night because he got up at 3:30 am and then again at 7:30 am. Aside from being tired, I don't mind because the more he heats, the bigger and stronger he will get.

To show you how active he is, I took this video this morning to send to his daddy because he had turned his body to a different position then when I had last left him.

Doctor's visit

Colin had his "1 month", which turned out to be 5 week, checkup on Tuesday. He weighed 7 lbs. 15 oz. (what his daddy weighed when he was BORN) and was 21.5" long. His doctor was so impressed with Colin, especially when he showed her how he can roll over and lift his head to look at everyone. He also got his second Hepatitis shot which he handled pretty well. He let out one long scream and then fell asleep in my arms afterwards. We need to continue to make sure he is eating well so that he gains weight, so the doctor kept him on the higher calorie formula for now.

Here is Colin at 5 weeks old:

Wednesday, May 27, 2009

General Information

This link I just found for general information on Down Syndrome has been one of the easiest to read so far. Click here to get to the brocure.

It can be found at the National Down Syndrome Congress website.

I have also found the National Down Syndrome Society website to have a lot of great information as well.

Strong Boy

Colin rolls over already! Colin is 5 weeks old, but started rolling over at just 1 month old! Here is a video of his new skills...

Colin is also grabbing objects, spending time on his tummy lifting his head, tracks objects with his eyes (especially black and white objects) and is trying to hold his head up on his own when we hold him in a sitting position. We are so proud of him!

Sunday, May 24, 2009

Early Intervention

One of the great things that is provided by the state of New Jersey is the Early Intervention program for children with disabilities. After the initial shock had worn off, and with the help of a friend who provided me with the initial research, I called the program and spoke with a very kind woman who started us on the process. I spent awhile talking to her giving her the information she needed on Colin. She was shocked at how young he was (maybe only 2 weeks old at that point) but informed us that the earlier we started the process the better. They will provide an initial evaluation which determines services he may need at that time, and then subsequent evaluations throughout his growth and development for the first 3 years of his life.

Two days before Colin turned one month, a physical therapist and social worker came to the house and spent about 2.5 hours here gathering information and evaluating Colin. He made us so proud that day by showing them everything he can do already...lifting his head, moving his legs in a crawling motion, grasping objects, tracking objects with his eyes, good sucking when eating, etc. They were very impressed because I found out that babies with Down Syndrome typically have low muscle tone. Colin sure is proving that wrong for himself!

After that evaluation, we were given suggestions to work on with him now which mostly include an emphasis on "tummy time" to further strengthen his neck and other muscles. A week after that, they come back to discuss financial information because there are some fees that we will be required to pay, and then another week later they come back to draw up Colin's Individualized Family Service Plan.

After the initial evaulation, Colin gave me another surge of confidence in him and this process for my husband and I. Colin is already proving to us that he is a fighter and we will continue to encourage and provide the things he needs to accomplish tasks and goals in life.

Welcome to Holland by Emily Perl Kingsley

This is something someone gave to me and has really put this journey into perspective for me...

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of a dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very specialy, the very lovely things...about Holland.

Saturday, May 23, 2009

The Beginning of the Journey

Colin was born on April 20, 2009 at 2:44 pm weighing 6 lbs. 4 oz. and 20 inches long. At around 2 am on the 20th, my contractions started to become closer together at approximately 5 minutes apart. I didn't want to jump the gun, and they weren't too painful, so I started watching TV for about an hour, growing increasingly more excited with the thoughts that this was the real deal. After an hour, I decided to shower to get myself ready and then woke up my husband with the news that I was in labor! We called the doctor and she said to take our time, but to head over to the hospital. We took some pictures, stopped for coffee, and arrived at the hospital just before 6am.

The first couple hours of labor were tolerable and we filled our time with laps of the maternity ward and TV. Around noon I finally was able to get the epidural, which lasted only an hour, and then things started to progress pretty rapidly. We were a little nervous because after the epidural, Colin's heart rate kept dropping and the doctor felt that he may have been pinching on his umbilical cord depending on the position I was in. Had he not arrived as quickly as he did, I would have had to have a c-section (which is not something I wanted to happen).

Colin's birth was very emotional as we heard his first cries and got to see him for the first time. Those feelings are indescribable to have your husband standing by your side and to finally see the little baby that you created together.

About 5 minutes after Colin was born, his pediatrician came to talk to us because she wanted to inform us that she was testing him for Down Syndrome based on some "traits" that she found during his initial evaluation. One of the traits that she told us she saw was a flat palmar crease on one or both of his hands. In that moment the elation that we felt was trumped by the shock of the news we were just told. I couldn't even cry at that moment because I was completely taken aback. The doctor informed us that it would take about a week for the testing to come back.

That whole week was torturous for us. The first few days of his life, Colin spent in the special care nursery because he was having trouble eating and he could not regulate his temperature (which I later found out were common occurances for babies with Down Syndrome). WWe were so excited when he started eating more and was healthy enough to go home only one day later than he was supposed to.

Unfortunately, while we were waiting for the results to come back, we were scrutinizing our own child trying to see if we could see the things the doctor had seen. One feature that was mentioned to me was the slight slant in his eyes, but I kept thinking that it was just because his face was so swollen from the delivery and that they would become "normal". I found myself breaking down a lot on the down time between visitors. I just couldn't imagine what life would be like having a child with "special needs".

The news came on Colin's 1 week birthday when the pediatrician returned my phone call over other information I had to provide her with. She told me she wanted to see us at the end of the week to weigh him, but also, because she had the results of the test and she wanted to talk to us about them. In that moment I knew that he had it, but I asked her to give the results over the phone. When she told me that the diagnosis was confirmed, I immediately felt like I had been punched in the stomach. For the next few hours, we didn't know what to do with ourselves but to cry. I couldn't help but feel disappointed and most especially scared. My thoughts immediately went to stereotypes about it and what the future would hold for my little boy. Would he go to college? Get a job? Fall in love and marry?

Our friends and family immediately rallied around us and Colin and reminded us that he was brought into our lives for a specific purpose. We have realized that a lot of what we have felt is common when facing the unknown and many people say it is a grieving process for the child you thought you were going to have. I know the road ahead is not going to be easy, and we will have many challenging days ahead, as will Colin, but he is our little boy and we couldn't love him more. We have put on our gloves and stepped into the ring...

The Purpose

My goal in creating this blog is to write about my thoughts and feelings as my husband and I begin our journey with our new son Colin and his diagnosis of Down Syndrome. To say that the news was not a shock would be a lie but as time has gone by, we have slowly begun to realize that this is our special mission in life. Colin has already begun teaching us and many people around us what a strong and determined little boy he is...and I couldn't be more proud...