31 for 21 - A Defining Moment

When Connor's Complete AV Canal Defect was diagnosed at about 28 weeks pregnant, it was like the whole world changed in an instant. I did not know what to think, how to feel, it was like I could not breath. We were then told that with this heart defect there was a 50% chance that our baby would have Down Syndrome. At the time I honestly was not sure what was worse. I did not know much about Down Syndrome, but all negative thoughts came to mind. I did not know anything about raising a child with special needs....this could not be happening to us. We would not be good parents to this child. We did not have the money or the time to commit to a child with special needs. We then started praying that it would only be a heart defect and that our child would not have Down Syndrome. After speaking to several different doctors, it was determined that our risk was actually much lower based on the Quad screening that I had earlier during pregnancy. It was more like a 1 in 100 chance. I started to feel a little better about it, but was still hoping that my baby would not be the 1.

Just prior to 3 months after Connor was born, he was going in for surgery to repair 2 holes in his heart and fix a problem with the valve connecting the 2 chambers. This was a major heart surgery that would be done by the Chief of Cardiac Surgery at Children's Hospital Boston. We had to go in the day before surgery and spend the night because they did a sedated echo and wanted to keep him overnight due to the sedation. In the morning, when the nurse came to take Connor down to pre-op it all hit me. It did not matter at all that Connor had Down Syndrome. I just wanted my baby to live through the heart surgery and come back home with us. He was my baby and nothing else matter. I only wanted him to live. We could figure everything else out later.

It is now 2 and 1/2 years later and Connor is absolutely perfect! He made it through his surgery without any major complications. He is the best son a mom could ever ask for am I am so happy that he was the 1. I cannot imagine Connor any other way =)

 

 

31 for 21 Day in the Life....

Yesterday was Connor's first evaluation for preschool. I cannot believe Connor is almost 3 and will be starting school in January. Where did my little baby go?!?  He had his academic and speech evaluations and the special education teacher and speech therapist asked if Connor would mind separting from me. As sad as it is, I knew he would not have a problem with that! So, they each took a hand and off they went walking down the hall, Connor having the biggest grin on his face the entire time because he was so proud of himself walking. We have a meeting scheduled in November to go over the results of all his evaluations so I do not specifically know how he did, but they said he was cooperative and did well. He did have a bit of a melt down the last 10 minutes and started to cry and pointed to his ear over and over again. They did not know what that meant but as soon as they told me I knew that he was asking for Daddy. For the past month or so that is how he has decided to sign daddy. He usually points to his ear and then signs car because he wants to go in the car with Daddy. He was very happy to see me when they brought him back out and was back to himself within minutes crawling and attempting to walk down the hallway.

Right after the evaluation we had to go down to Children's Hospital at the Lexingon location for Physical Therapy. Connor started there a few weeks ago and loves it! Out goal is for him to walk independently before his third birthday and we are hoping that the equipment they have in the clinic will help. More on PT in a separate post later! We spent an hour there and then came home for naptime. On the way home, Connor drank a yogurt smoothie for lunch and then I gave him some doritos in a zip lock bag. Normally when I give him a snack in the car he dumps it all over himself and the floor, but he was in love with the doritos. By the time we got to the bank near our house his face and fingers were covered in orange cheese but I did not find one crumb on his seat or in the car =) Connor fell asleep immediately and I had to wake him up an hour and half later to pick up Makayla from a playdate at her friends house. We then went up to my office for a few minutes to pick up work and then to Makayla's gymnastics class. Home for dinner, bath, stories and bed. Just another typical day for our family!!!

Working hard at PT

31 for 21 - Kindermusik Class

Connor started attending Kindermusik class with Miss Rose when he was 5 months old. At that time he was only coming because Makayla was in the class, but even then I think he enjoyed it! We only did it for a few months at that time, but started up again when he was 17 months old and have been attending ever since. Miss Rose is absolutely fantastic and amazing with all of the kids. Connor has grown attached to her in class and prefers to sit on her lap instead of mine! The class that he attends is for ages 18 months to 3 years. We sing some songs, explore different musical instruments, and dance around the room. Connor loves the drums and bells and loves to copy Miss Rose's gestures. We both love the time we get to spend together at this class!  The class encourages him to stand up and try to walk and dance along with the other kids, teaches him to share, and reinforces the sign langauge that he is learning.

 

 

31 for 21 - Goose Rocks Beach Vacation

In July, we went on vacation for a week with friends and family in the Kennebunk, ME area. I was so excited for this vacation for many different reasons. First of all, it was the first time since our honeymoon over 7 years ago that I was taking an entire week off from everything! I have taken lots of days and and half a week, but never a full week away from it all so that was very nice! No work, no therapy sessions, no running around like crazy. Secondly, we were going on vacation with some of our best friends...my brother Mike and and sister-in-law, Miss and my beautiful neices, Madi and Emma, as well as our great friends, Mel & Luke with their kids Jack and Piper, Becky and Liam with their kids Alana and Liam, and Joel and Andrea with their son Sam. We started looking for a beach house over 6 months ago, and found one that could accomodate us and was in a decent price range that was described as minutes from the beach. After booking the house we realized that minutes from the beach actually meant driving minutes and the house was 7.3 miles away from the beach. Though I was a little disappointed by this at first since it meant I would not be able to run on the beach in the morning, it worked out really well in the end.

When we first arrived at the house, we were a little shocked! It looked very nice from the outside. Large house that could technically be broken into a duplex attached to an old barn. Upon entering the house we realized that it was very old as it had the musty, cat pee smell in every room. It was extremely stuffy and about 95 degrees in the house. No air conditioning. It had 2 separate kitchens and 2 living rooms which was a plus with the amount of people who would be there for the week. It also had 2 separate staircases leading to the 7 bedrooms upstairs. The rooms were all decent sizes, however, the stairs were very steep and not great for the young kids! Luckily we had brought 2 gates from home and found some extra's at the house. One of the rooms had the stairs as part of the room with no door or railing...definitely not safe! But we moved a dresser and blocked them off so it all worked out.

We were all a little skepticle on how the week was going to turn out based on the conditions of the house, but it turned out to be a fantastic week and aside from the house being so far from the beach, I really think it was a nice place. We didn't have to worry about the kids breaking anything and I know for a fact that Koolaid and Milk were both spilled on the carpet and no one will every know about it =) By the third night it had cooled off drastically so sleeping was a lot better!

We went to the beach everyday and could not have asked for better weather. It was absolutely gorgeous. The beach was beautiful and very quiet. The water was cold, but not bitter cold. Connor loved the sand and the water. He played in the sand for hours shoveling and building and loving every minute of it. He loved to watch and play with the other kids. He enjoyed playing in the water as well. He crawled into the waves and would then crawl as fast as he could to outrun the waves! Makayla loved the beach as well! She has always loved both the sand and the water and of course had a fantastic time.

Mom and Makayla

Dad and Connor

Family Photo

 Jack

"Murphy face"/Angry Connnor



 Makayla, Emma, and Alana

 Makayla and Emma (Twins)

Sam, Makayla and Emma

Piper

 Liam

 Madi - bathing beauty

Uncle Mike and Connor

Makayla, Emma, Madi and Connor

 Cousins

 Makayla

Connor standing!!!

Connor and Madi

31 for 21 - NNEDSC Golf Tournament

Monday, October 1st was the 1st Annual Northern New England Down Syndrome Congress Golf Tournament at Candia Woods. Connor and I did not actually golf in the tournament, but we went up with Makayla for the dinner at the end. The golfers all had a great day and seemed to enjoy the event. Connor and Makayla had a fun time at dinner and helped hand out the awards with some of their other friends. Thank you to all the golfers who came out to support Connor and and his friends. Especially Uncle Mike, Mem, Pa, Rick and Norma =) A big thanks to Brian Laing for setting the whole thing up. Also, thank you to all of the sponsors, including SFC Engineering (where Jeff works). Definitely a success and we look forward to future years!

Jeff with SFC Sponsor sign

Connor and his best buddy Ty

Mem and Makayla

Mem, Connor and Pa

31 for 21 - Murphy Baby # 3

We would like to officially announce that Connor is going to be a big brother! We are all very excited and cannot wait to find out if our new little one is a boy or girl. I am currently 14 weeks along and our newest addition is due on April 1, 2013. We are expecting an April Fool's baby =) April 1st will also be the third anniversary of Connor's heart surgery so it is a good day all around!

Ultrasound was at 6 weeks 3 days

13 weeks

Connor's newest gesture is shaking his head "no" which he says to everything you ask him even though he will do it with a huge smile on his face. So of course when I ask him if he is going to be a good big brother he shakes his head no while smiling and laughing. We know that he is going to be an amazing big brother and teach the baby all kinds of amazing lessons! Makayla is beyond excited and we already know that she is the best big sister anyone could ever ask for. We are all looking forward to continuing our fun adventures =)

31 for 21 - Down Syndrome Awareness

Here we go again! I cannot believe that it is already October 1, 2012. The year is flying by. Once again, I am going to try posting every day in the month of October to help raise awareness for Down Syndrome.  31 posts for Trisomy 21.  Before Connor was born 2 years and 9 months ago, I did not know much about Down Syndrome at all, but now I cannot imagine my life without knowing what an amazing miracle it is. Connor makes me smile every single day and helps me remember what a blessing each day is. I love this little guy and the joy he brings our family and look forward to sharing our journey with you. Stay tuned =)