Happy Easter!!

Happy Easter!!! We had a very busy and fun filled day. We started the morning out with an easter egg hunt and the kids opening their baskets from the Easter Bunny. We went for breakfast at Mem & Pa's and dinner at Aunt Eileen & Uncle Tim's house. Yummy food all day long and of course way to many presents for the kids!

World Down Syndrome Day!

Connor is a 26 month old, blond hair, blue eyed boy.

Connor is honestly the happiest kid I have ever met and I am not just saying that because he is my son. When we go to the grocery store or the mall, it takes so much longer than it should because Connor waves and smiles to everyone which causes them to stop and everyone always smiles back.

• Connor gives the best hugs. He wraps his arms as wide and as tight around you as he can. He places his head on your shoulder and squeezes as hard as he can.
• Connor loves to give kisses You have to be careful when asking for a kiss because for the most part he will blow a nice kiss, but if he really likes you then he will give you a big open mouth, wet kiss.
• Connor has many friends and loves to go on playdates especially to the park. The swing is the greatest invention in Connor's mind.

• Connor loves going to music class and swim lessons. Splashing in the water is an all time favorite. Pool, bath, dog bowl, doesn't really matter, it is all fun to Connor.
• Connor is the best little brother. Sure, he annoys his big sister Makayla when he steals her toys or food, but it is very apparent that she loves him with all her heart and would do anything for her baby brother. They really are great friends.

• Connor loves his 2 big cousins as well and makes sure that even though he is the youngest, he will not be left behind. He chases them everywhere they go and they adore him. 
• Connor loves to play and his favorite toys include trucks, stacking cups, blocks, trains, bubbles, and musical instruments.
• Connor loves to play ball especially with Makayla. They will roll and throw a ball back and forth for the longest time.
• Connor loves to cuddle with our dog, Loxi.
• Connor loves to climb stairs and loves to go down slides face first on his belly.
• Connor loves to read books and loves to listen to me sing. His favorite songs are Itsy Bitsy Spider and the Wheel on the Bus.

• Connor loves to do yoga videos with me and is actually very good at it. He is very flexible and has mastered Downward Dog position.

• Connor is very compassionate and when someone is upset, he makes sure to give them a big hug and then smiles and even laughs to try to cheer them up. Makayla bumped her knee the other day and started crying. Connor started cracking up out of know where which forced her to laugh and she kept saying no Connor I am crying, not laughing, but soon forgot about the sore knee.
• Connor has a amazing sense of humor and laughs at the most random things. He is so silly. He finds everything funny and you cannot help but smile when you are around him.
• Connor has Down syndrome.

Since today is World Down Syndrome Day, I would like to include some general facts about it, but would like to stress that there is nothing negative about Down syndrome. Yes, Connor has an extra chromosome, but it makes him that much more special. I would not change a thing about Connor. Down syndrome is nothing to be afraid of. It is a blessing. He is absolutely perfect just the way he is. As seen above, Down Syndrome is just a very small part of Connor.

  

Facts about Down Syndrome

Down syndrome is the most common genetic condition. One in approximately 700 babies is born with Down syndrome. It is caused by an additional copy of the 21st chromosome. Some common characteristics of Down syndrome include flattened bridge of nose, almond shaped eyes, small ears, protruding tongue, short fingers and toes, and a horizontal crease in the palm of hand. People with Down syndrome may have developmental delays to varying degrees, but as I have learned, there is nothing that they cannot do if they put their mind to it. Each person with or without Down syndrome is an individual just like the rest of us and deserves respect, love, and the opportunity to succeed.

Happy World Down Syndrome Day!!!



Happy St. Patrick's Day!

Happy St. Patty's Day! We spent this gorgeous afternoon at Uncle Andy's house with family and friends and we all had a great time! The corned beef and cabbage dinner was excellent and the kids had lots of fun exploring the woods and stream in Uncle Andy's new backyard. Thank you Andy for a great time =) 

26 Months

Another month has gone by so quickly and I am sad when I see how fast my baby boy is growing up! Connor may have some developmental delays, but he is not delayed on the stage commonly known as the terrible twos!! He has started to show his independence much more over the past few months, but it really seemed to come the same time he turned 2! He has started to give me these looks that say "really mom, are you serious?!?!" He rolls his eyes at me when I ask him to do things. Although he still does not say the word, he has clearly learned to communicate "no."  My very easygoing, go with the flow toddler is now determined to do what he wants to do when he wants to do it!

I bought Connor a new pair of sneakers that seem to fit perfectly with his sure steps and he is much more stable in standing now. He still does not want to let go of the furniture or my fingers, but I can just tell that he is moving closer and closer to walking everyday! He is so proud of himself and he should be =) Last month, Connor didn't want to walk at all when holding my hands, but now that it is nice outside he will walk all over the yard and even up steps without even trying to sit down! Huge progress.

Connor's communication is really picking up as well. He still has no spoken words, but he has no problem getting his point accross! He is starting to make requests through signing. Each night we will go upstairs and after doing pj's and brushing teeth he immediately starts to request books and music. It is so cute and impossible to say no. Now we are running into the problem of more book and more music!!

Here are some pictures from the last month.

Connor watching Makayla at soccer

Such a big boy

Pulled up to stand very nicely on his cousins trampoline, then took a big bite out of the foam! 

Connor loves to swing!

Cardiology & ENT

On Monday, Connor had his cardiology checkup. His cardiologist, Dr. Michael de Moor from Tufts Medical Center travels to Chelmsford, MA on Monday's which is great for us. Connor had appointments with him every other Monday for the first 4 months of his life and then monthly for a while after his heart surgery. Everyone in the office is very friendly and we spent so much time there in the early months that it almost feels like we are going back to visit old friends. Dr. de Moor is the doctor who read the fetal echo when I was still pregnant and diagnosed Connor's complete AV Canal defect. He was there when I was still pregnant monitoring Connor's heart condition, and was called in as soon as Connor was born. Going to the cardiologist brings back all the memories and feelings from the first few months and of course I am always nervous they will find a problem, but at the same time, it is nice to see everyone again and nice for them to see how great Connor is doing!

As always, the first part of the visit is an EKG. As you can imagine, this is tough to do on a constantly moving toddler. I am not sure what they did in the days before iphones, because playing the Itsy Bitsy Spider App was the only way to get Connor to sit still for the few seconds needed to maintain his blood pressure and complete the EKG. Next was the height and weight check. The nurses were amazed at how big Connor is now because it was such a struggle for him to gain weight in the beginning. Now he has no problem with it! When we are finally in a room, the Nurse Practitioner comes in to go over any changes in medical history and briefly listen to his heart and lungs. Unfortunatly, Connor's favorite person at the Cardiologist was out on Maternity Leave so we had someone new. She was very nice and just as thorough, but we were sad to miss MaryEllen. Everyone kept saying that she would be sad that she missed Connor. The Nurse Practitioner we saw said that Connor would have to have an echo done because of the mild regurgitation that was seen last February. She asked how he was during an echo and if we would need to wait to do a sedated one. Fortunately, it had been a year since he had one, but that also meant that I really wasn't sure how he would do. My prediction was that it would not go well since he doesn't even like to be on his back for a diaper change, but I did not want him to go under sedation again. The doctor came in next and reviewed Connor's medical history. He listened to his heart and said that an echo was not necessary this year because he did not hear a murmer!!  That was definitely fantastic news =)  Connor is cleared for another year.

We continued on with our day and headed into Boston to Tufts Medical Center. We have had so many doctor's appointments lately that it has been tough to fit them all in. Connor had a bad ear infection just over 3 weeks ago and had some blood draining from his right ear.  The pediatrician put him on oral antibiotics, but after we saw the blood and called the ENT they said it could be the tube being pushed out from the infection since the tubes had been in for almost a year. They prescribed antibiotic drops and said they had to check his ears in 2-3 weeks to make sure the tubes were not blocked. His right ear tube is actually fine and still doing what it is supposed to do! However, the left ear tube had falled out. It was still hanging out in there and the doctor said that it would eventually work itself out over the next few months, but he wanted to try to get it out if possible. He used these very long scissor/tweezer things that went inside Connor's ear and was able to remove the tiny green tube. I would have never let anyone near the inside of my ear with those things!!!

Only Connor is this happy at the ENT's

After removing the tube, the doctor looked in his ear one more time and said that the hole had closed up which was great, there is no infection and no fluid. So, now we wait for 2 months and watch for infection and see how the fluid is to determine if another set of ear tubes will be needed.



25 Months

This past month has gone by unbelievable fast! I was shocked when Connor turned two and now another month has gone by. I hope the whole year does not continue to fly by! Although Connor is still not close to walking, he pulls up to stand super fast and now does it against a flat wall. He cruises along the furniture and is able to get from the couch to the coffee table as long as he doesn't have to completely let go. We just need to keep working on his confidence and I know he will get there! His personality continues to develop and he has mastered rolling his eyes at me when he doesn't like what I say =) Connor still doesn't have any words, but he is picking up new signs everyday and is starting to be able to blow into a horn which is great for sound production. Again, we know that he will get there in his own time!

We have spent the past month at many, many doctor's offices, but I am not going to go into any detail now as I updated after most of them individually in separate posts. We have a few more scheduled visits over the next few weeks and then hopefully we will have a break for a while and be able to focus on some good old playtime! It is a good thing Connor loves to visit with people because we spend a lot of time in waiting rooms =)

Makayla continues to be an amazing big sister teaching Connor something new everyday! She has started skiing lessons this month and is having a great time in that new endeavor.

Here are some pictures taken over the last month...

Cousin pig pile

Go Pats!

Giggles

"Stop taking my pic mom; I will let go when I am ready!"

Sleep Study Results

We went back the doctor again on Monday for the results of Connor's sleep study. As a reminder, Connor had Central Sleep Apnea and only a few episodes of Obstructive Sleep Apnea prior to having his tonsils out, and although it was not likely that the tonsilectomy would stop the Central Sleep Apnea, the doctor strongly believed that it would help. Great news! Connor only had 1 episode of Central Sleep Apnea during his most recent sleep study. He did, however, have an average of 2 episode's of Obstructive Sleep Apnea during this study. The doctor did not really have an explanation for this other than explaining his belief that he thought Connor actually did have the Obstructive Sleep Apnea even before having the tonsils out even though the original sleep study didn't show it. All along he had said that the Central Sleep Apnea could have been caused by the Obstructive Sleep Apnea and after an episode of Obstructive, his body may have relaxed too much that his brain would forget to signal the body to breath. Anyway, it is still fantastic news because now we don't have to worry about a sedated MRI to check possible problems with his brainstem. At this point they are considering the Obstructive Sleep Apnea as mild and have put him on a prescription for Flonase which is a corticosteroid nasal spray to use before bed to keep his nasal passages open while sleeping. They do not think oxygen is necessary at this time and we just have to monitor his sleep patterns to make sure it doesn't get any worse! So, the tonsilectomy did help with Connor's sleep struggles and we are still hoping to get some good news at his next swallow study in March as well!!