Christmas

Christmas was so much fun this year! Connor understands the concept of presents and opening them and although all he really needed was wrapping paper and boxes, he is enjoying playing with ALL of his new toys! Makayla is at the perfect age and loves everything about Christmas. She loved shopping and picking out the perfect gifts for family members and of course loved opening gifts herself. Christmas Eve was spent with the Murphy's at our house. We had a very special visit from Santa just before dinner and the kids loved him this year.

Makayla has certainly come a long way in just a few short years!  The first photo is Makayla visiting Santa in 2008. Not a fan at all. The second is from this year and she acted like they were old friends and talked to him throughout the whole visit!

Christmas morning was a lot of fun. Connor was up at 6:30 and spent an hour and a half just looking at his presents waiting for Makayla to wake up. She slept until 8 which is very unlike her.

They shared all their new toys very nicely and Connor even enjoyed climbing inside Makayla's new Barbie dollhouse!

After opening gifts from Santa and having a very nice family breakfast we went down to Aunt Eileen and Uncle Tim's house for dinner with the family.

Christmas hugs

Christmas was extended an extra day and we spent Monday morning at my parents exchanging gifts and having another nice meal!

The kids received way too many gifts this year but truly appreciate all their new toys! We hope everyone else had a fun Christmas and wish you all the best in the New Year!







23 Months!

I cannot believe Connor is almost 2. Today he is 23 months; only one more month to go and he will be 2! What happened to my little baby?!?!  Connor has developed quite a personality over the past few months. Despite having his tonsils out 2 weeks ago, Connor has progressed a lot. He has become much more independent and is constantly on the go. He has mastered the hands and knees crawl and no longer uses the army crawl! This is very exciting because he can now wear white shirts without them turning black =)  He puts his head down and off he goes flying across the room. Fastest crawl I have ever seen. He has also become quite the climber these past few weeks and enjoys climbing into laundry baskets, onto the shelf of the bookcase and has even taught himself to climb an entire flight of stairs. He has no idea how to get back down, but is great at going up!



Connor laughs all the time and thinks he is so funny. When he makes it to the top of the stairs he stops to clap for himself and has a huge smile on his face! 

Although he is still not standing or walking on his own, he is much more stable cruising along the coffee table and the couch and can stand on his own for about a second.  He is very stubborn about walking but we know that he will get there in his own time.

Connor is excellent at following directions when playing with toys and his sign language is really coming along. He frequently signs: more, all done, eat, milk, sleep, book, play, bubbles, cars, as well as a few others. He has even started to put 2 together and has asked for more bubbles through sign language. In addiiton to picking up new signs, Connor is starting to add more speech sounds and although he still has no words, is trying to respond with sounds when asked a question. He is starting to try to immitate animal sounds and is working on saying hi an up.

The kids had a nice visit with Santa this month during our playgroup at the fire station. Connor was very interested in Santa's outfit and for the first time in 4 years we got a smile out of Makayla while sitting with Santa. This doesn't mean she smiled the whole time he was in the room. She hid for the first 10 minutes and slowly made her way over and we were able to capture one nice photo =)

Tonsilectomy/sleep apnea/swallowing

I haven't had a chance to update in a few weeks, but boy have we been busy. Today Connor is in surgery to remove his tonsils, do a scope of his vocal cord area and take washings of the lungs to send for a biopsy to see what he is aspirating. After the initial sleep study we saw our ENT who advised that the report showed Connor has Central Sleep Apnea which means that his brain is not signalling to his body to breath at times when he is sleeping and only one episode of Obstructive Sleep Apnea which was not considered abnormal so he recommended leaving the tonsils alone and would proceed with the scope and lung biopsy to see if anything could be done for Connor's aspiration of liquids. We were referred to a Sleep Specialist to determine if Connor should be on oxygen while sleeping for the Central Sleep Apnea.

I was lucky to get him an appointment with a Sleep Specialist at Children's hopsital the following week. As soon as the doctor reviewed the results of the sleep study and looked at Connor's tonsils, he recommended removing Connor's tonsils and going for a follow up sleep study 6 weeks after surgery. He said that even though the Obstructive Sleep Apnea did not show up during the sleep study, he still believed that Connor did have it and wanted to remove his gigantic tonsils. We are hoping that removing the tonsils will help with the swallowing problems as well.

In 6 weeks Connor will go for a follow up sleep study and they are hoping to see all sleep apnea resolved, but if he does still have episodes of Central Sleep Apnea, he will have to go for even more testing. They beleive that it is possible that Connor has a Chiari Malformation which is a problem with the brain stem that affects sleep and swallowing. I guess there is nothing we can do except wait and see and today we will focus on his surgery and recovery. He will have to go for a sedated MRI to check for this.

We have been told to expect a long 14 day recovery and I have heard some terrible stories about recovery so we are praying it is easy for Connor. Will keep you updated!

Here is Connor in the waiting room this morning prior to surgery

Swallow/Sleep Update

On Monday Connor went back to his ENT for his sleep study results and to check on his ear tubes. Once again we got no answers and left with more questions!  We did learn that Connor does not need to have his tonsils out at this time because he does not have Obstructive Sleep Apnea which is good news.  It was thought that he would definitely have Obstructive Sleep Apnea because of his extremely large tonsils. If this sleep apnea was found they were going to remove his tonsils and hope that would help his silent aspiration when drinking thin liquids as well. We did learn, however, that Connor has Central Sleep Apnea. This means that his brain is not telling his body to breathe at times during sleep. The report shows that he stopped breathing 18 times during the night for an average of 10 seconds and his oxygen levels dropped to 87%. The only thing the doctor said about this was that he probably should be on oxygen while sleeping to prevent dropping to dangerous levels, but we should see either a Pulmonologist or a doctor from the Sleep Lab.

So, the next step to resolve the silent aspiration problem is to have Connor go in for a Laryngoscopy which is exploratory surgery to look at the back of his throat and larynx and to biopsy the lungs. They did a basic version of this last time we were in the office, but they want to do it under anesthesia so they can go further in and see things more closely. If they do not find any structural damage causing the silent aspiration during this test then we will be referred for feeding and swallowing therapy to hopefully teach Connor the proper way to drink and the hope is he would eventually outgrow it. If they find food or something else in the lungs then we will be referred to other doctors. So, back to the waiting game.

I have done a lot of research on the Central Sleep Apnea the last few days since the ENT did not give us much info on it. It appears to be very rare in children. The Sleep Study was done at Tufts Medical Center since that is wear his ENT is located, but I decided that I would rather take him to Children's Hospital and was able to get him an appointment in the Center for Sleep Disorders on Monday. Hopefully they will be able to explain the report and give us some explanation as to why he stops breathing periodically during the night. I am still not convinced it was an accurate test since he didn't sleep a lot of the night and pulled just about every wire off at one point or another, so I do plan to ask about that as well.

It is very frustrating that we still have no answers and have learned of a completely new problem. If they do decide to put him on oxygen at night we are in big trouble because there is NO WAY he will leave it on!!!

Will update again next week as soon as we learn some new info.

Happy Halloween (a little late)

Halloween was postponed until November 5th here in Atkinson this year due to the October snowstorm and the widespread power outage!  Connor was the cutest monkey I have ever seen and of course Makayla dressed up as a princess =)  What else would she be?!?! This time Makayla dressed as Belle from Beauty and the Beast because her and Emma decided to trade their dresses from our summer vacation to Disney. We all went trick-or-treating around the neighborhood and made it down to Mem and Pa's house for a short break before heading back home.

Pa and all the kids =)

Day 31 - My Letter to Connor

Dear Connor,

I want to start out by saying that I love you with all my heart.  Before you were born and we found out that you had a problem with your heart we were so scared. After you were born and we learned that you had Down Syndrome we were still scared. Afraid of the future, afraid you would be treated poorly, afraid that you wouldn't be given a chance.  Looking back at that time now I do not know why I was scared. You have taught me that there is nothing to be afraid of. Together as a family we can get through anything. You are the strongest person I have ever met. You fought through your time in the NICU and were able to come home just 10 days after you were born even though the doctors thought you would have to stay much longer. You fought through your heart surgery and your recovery. I know that you will fight through whatever is sent your way. You work so hard to reach all of your goals. You try and try again until you accomplish what you were working so hard to achieve. I admire your strength and your work ethic and you are not even 22 months old.

You have opened my eyes to a whole new world! I have learned that every person deserves understanding and respect. Every person should be given a chance to follow their dreams. Because of you I have met so many amazing people.  You make life interesting and fun. You always see the best in every situation and go through everyday with a smile on your face.

I love everything about you. I love your smile and your giggles. I love how you are so stubborn and will work at something until you figure it out. I love your tiny hands and feet. I love that even though you have the tiniest feet it is still impossible to get them in a shoe! I love your belly and the giggles I get when I tickle that belly. I love the way you blow a kiss. I love your hugs especially when you give an extra tight squeeze. I love the way you say mamamama and climb into my lap for a hug. I love your scar on your chest because it is a constant reminder of what a fighter your are. I love it when you dance and I know that I will love it when you sing once you learn to talk.  I love that you know how to give the perfect little smile to make me melt. You have me wrapped around your little finger =)

I look forward to seeing you grow up and seeing all the things that I know you will accomplish. You have taught me to love deeper than I ever thought was possible. That love grows deeper and deeper everyday and everytime I see you smile. We are all in this journey together and I can't wait to see where it is going to take us. I will be with you every step of the way. I love you with all of my heart Connor.

Love,
Mom