Day 1 - Down Syndrome Awareness 2015

Whoo-hoo today is the first day of Down syndrome awareness month and I look forward to sharing a daily fact about Down syndrome or a picture of this amazing little boy because really who can get sick of seeing that face!! Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. I would like to add that each person with Down syndrome is a unique individual with their own personality.

Day 31 - Down Syndrome Awareness - Letter to Connor

Dear Connor,

Another year has passed and you are growing into such a big boy. You surprise me everyday with all of the new things you have learned. You are such a funny kid who loves to laugh and more importantly loves to make other laugh. You are constantly doing things to make Nate and Makayla crack up. The three of you play together all the time and we are always listening to giggling.

You have learned so many new things over the past year. You know most of the letters of the alphabet. You can count to 10 and are starting to understand some addition and subtraction. We waited for so long for you to walk and now no one would every know you didn't start walking until you were 3. You are running around getting into trouble all the time! You can jump and do hand stands and are awesome at yoga poses.

You have some new favorite shows you like to watch on the iPad. Before, the only show you would watch was Mickey Mouse, but now you enjoy Daniel Tiger, Curious George and Phineas and Ferb. As much as I love Daniel Tiger, I still secretly smile when you turn on Mickey because it reminds me of you when you were younger!

Not only are you learning new things everyday, but you also teach us new things all the time. I will always admire how hard you work to accomplish whatever goal you are working towards. You have taught us all to slow down and enjoy the little things in the life instead of just rushing around (even though I do try to hurry you along most of the day!) You have taught Nathan almost everything he knows and I do blame you for many of his bad habits =)

You give the most amazing hugs and I love to snuggle on the couch reading books with you. I love you more and more everyday. I am so lucky to be your mom!

Love,
Mom

Day 16 - Down Syndrome Awareness

Dear Nathan,

I think it is only fair that I write a letter to you after I wrote to Makayla telling her what a wonderful big sister she is. While I don't have as many nice things to say about you just yet, I do want you to know that you are the perfect brother for Connor. I believe at this point in your life you think your whole reason for being born is to torment Connor (and me). You know exactly how to get under his skin and upset him. Connor has always been very sensitive to certain noises (like coughing) and you have that perfect pitch in your cry/scream and know how to set him off. Almost every time you are in the car together you start with that cry just to get him going and then you are both yelling and crying! You fight over toys and huggies and food and just about everything. And then in the very next minute you are like best friends.  I know how much you love each other. When you want to be sweet you can and you love to give each other hugs! I know that you are always going to be there to watch out for your big bro in the same way that he is going to watch out for you. You walk him out to the bus every morning and then wait at the door for him to get home a few hours later. As soon as that bus pulls in the driveway you are out the door running to give Connor the biggest happiest greeting!  So even though the two of you may fight on occasion, you absolutely love each other and I am very thankful that you are here to teach each other and learn all about life together.

Love,
Mom

Day 12 - Down Syndrome Awareness

Fun day apple picking with the family! Connor enjoyed eating every apple he picked just like his brother and sister =)

Day 10 - Down Syndrome Awareness

I am so thankful for the town we live in and our neighborhood. We have met the most amazing families. Everyone we meet has been so accepting and encouraging. All of the kids love Connor and make sure that he is included in everything.

Some girls from the neighborhood hanging out with Connor at the Fall Festival

 Part of Connor's fan club at the Buddy Walk

Day 8 - Down Syndrome Awareness

Today I decided to write a letter to Makayla because she truly is the best big sister to Connor and Nathan and has no idea. I love you so much, Makayla.

Dear Makayla,

You are by far the best big sister Connor could ever have. I can’t even put into words how amazing you are with him and I know you always will be. When we first learned that Connor had Down syndrome, I remember feeling so sad for you, the big sister, because you were not going to experience all the “normal” sibling things we had hoped and dreamed for you. Your life was going to be so different than we imagined and that made me really sad. I could not have been more wrong and you starting showing me that the moment Connor came home from the hospital.  You have loved Connor unconditionally from day 1. You were only 2 years old, but already you were teaching me that everything was going to be ok and that it didn’t matter that it was going to take Connor longer to learn things because you were going to be right there for him cheering him along and being his number one teacher.  I used to feel sad that you had to sit through countless early intervention therapy sessions every week, but you never minded. You loved every minute of it and loved playing and teaching Connor along the way. You have always been and always will be Connor’s best teacher. He listens to everything you say and learns from everything you do. You are his idol and he wants to be just like his big sister, “K”. Connor worked for a very long time learning to walk and you were with him every step of the way encouraging him to stand up and to chase after you. You have learned sign language with him and definitely know way more signs that I do. You have always known what Connor is trying to tell us.  When Connor was potty training, you sat in the bathroom singing him songs over and over again. I don’t know anyone else who has that kind of patience. You come to every one of Connor's soccer games to encourage him, cheer him on and walk him back onto the field when he runs away! You are the most patient, compassionate, and loving 7 year old I have ever met and I am so thankful that you are Connor’s big sister. He is so lucky to have you.  We are all so lucky that you are part of our family.  You are going to do amazing things in this world and I look forward to seeing all that you accomplish. 

Love,
Mom

First picture of Makayla holding Connor

Such Love

Mickey Mouse and  Bumblebee Fairy

Down Syndrome Awareness 3:21

Big smiles

Ready for a rainy day

October 7 - Down Syndrome Awareness

Today I am feeling nostalgic and was going through some of my original posts. I am going to share a post from my first year participating in the 31 for 21 blog challenge in October 2011. Here was day 5 back then when I emotionally shared our experience with Connor's open heart surgery. He has come such a long way since then...

Day 5 - Open Heart Surgery

Connor's surgery was scheduled for April 1, 2010. April Fool's Day, really?  Jeff, Connor and I went down to Children's Hospital Boston on March 31 for Connor's sedated echocardiogram that was needed prior to surgery. He had several done since birth but this was his first sedated echo. We were there for most of the day for other tests as well and since Connor was born prior to 37 weeks, hospital policy required him to stay overnight after the sedation. Here is Connor the morning just before going in for surgery.

He was so peaceful. I am happy he did not understand what was going to happen next. Handing Connor over to the doctors at this point was the hardest thing I have ever done. The surgery took approximately 6 hours and we were given updates every few hours. Overall, sugery went smoothly and we will forever be greatful for Dr. Pedro del Nido. The surgical procedure included the repair of complete AV canal defect with Dacron ventriculoseptal defect patch and pericardial atrial septal defect patch. Primary closure of PFIO and closure of cleft MV and cleft TV. After completing this portion for the surgery, Connor was taken off bypass, but a small residiual ventricular septal defect was seen so bypass was reinstated to repair this defect. Basically I believe this all means that the doctor repaired 3 holes as well as the valve along the middle.

This is what we saw when we were finally able to enter into the cardiac PICU to see Connor. They had told us he would have lots of tubes and wires, but I really had no idea what to expect. They told us all of the medical things that we needed to know, but the main thing I remember the nurse telling me was that it was best for us to not talk near Connor and not to touch him as he was still aggitated and hearing our voices or feeling our presence may make that worse =(  All I wanted to do was sit there and sing to him and hold his hand and tell him everything would be ok, but for the first few days I wasn't even able to do that. The first two nights after surgery, Jeff and I both stayed at the hospital with Connor and after that we alternated nights since Makayla was still at home and it was realy difficult leaving her. She was fantastic through everything and had a great time with family while we were away.

Four days after surgery Connor was extubated, but then the following day a pigtail was placed for Chylous effusions. I never completely understood what this meant, but the pigtail was there to drain a milky fluid that had built up. Connor was no longer able to have regular formula and was given prescription Monogen and it had something to do with the triglycerides. He was on this prescription formula for the next 8 weeks. Connor did have a favorite nurse named Liz in the PICU who spent 4 daytime shifts in a row with him. She was fantastic with Connor and great at explaining everything to us. All of the nurses were awesome, but we will always remember her.

Here is Connor all tucked in and resting comfortably...

Big Sister Makayla comes for a visit...

Six days after surgery, Connor was transferred from the PICU to the inpatient cardiac floor. Things were certainly more relaxing in this room. He went from having a nurse all to himself to only seeing a nurse every few hours or so. Huge difference. The pigtail was removed and Connor went for another sedated echocardiongram. Everything looked great! Connor was discharged on April 9, 2010 and came home to heal.

It was certainly a long 10 days of our lives, but now Connor's heart is doing great and he only has to follow up with Cardiologist once a year!