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!

Day 4 - Down Syndrome Awareness

Today was the Fall Festival at the kids school. Even though Connor has only been attending his school for a month he has made himself well known. Every corner we turned and every room we walked into all of the kids knew Connor and greeted him with a big high five or sometimes a hug. It was so great to see =)

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 =)                                             

                                                    

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

Day 28 - Insurance Battles

We have been struggling with our insurance company since the very beginning. It all started back in 2009 when I was still pregnant with Connor. When my doctor first saw a heart abnormality on an ultrasound in December of 2009 he immediately sent me for a level 2 ultrasound at our local hospital, Lawrence General where Connor would be born. From there, we were sent to Tufts Medical Center in Boston for a Fetal Echo where the heart defect was officialy diagnosed. That was about a week after the first level 2 ultrasound. Shortly after that I received a statement from insurance indicating that the level 2 ultrasound was not covered as the Doctor who perfomed it was out of network. First of all, we were not given a choice when we were sent for the testing and the test was done at a hospital that was covered by our insurance. We called our insurance company and were informed that even though the doctor came to Lawrence General he was from Tufts Medical Center which is not part of the network covered and the equipment used was technically the Doctors and therefore not covered. We had been told that Connor should be delivered in Boston due to the high risk pregnancy, but that it was still an option to deliver at Lawrence General if we planned to induce the one day of the month that a cardiologist from Tufts would be on duty at Lawrence General. We found out that either way we would not have insurance coverage for any of this. After many, many discussions with the insurance company we discovered that there would be coverage if the delivery was an emergency situation such as if I was transported in an ambulance or if Connor was born at Lawrence General and then trasported himself in an ambulance as an emergency.  We spoke with my doctor as well as Connor's future pediatrician's office to see if they had any more information. The office manager at the pediatrician was fantastic and called our insurance company on multiple occasions explaining the situation. The only problem was it is impossible to get through to someone who can help. The doctors can only talk to specific departments, the patients can only talk to other specific departments and no one on their end communicates with each other. As if we didn't have enough to worry about with the heart defect, we now had to worry about how we were going to pay for it!

During all of this arguing we also recieved a bill for $585 Makayla's nebulizer that was medically necessary and given to us at the pediatrician's office. Again, we weren't given a choice as to where we could get this nebulizer. It turned out that the medical supply facility was not covered by our insurance. After fighting for this one they changed the billing code to have it come from our doctor's office so the claim was paid in the end.

On January 12, 2010, we were scheduled for a second level 2 ultrasound at Lawrence General.  At this time the High Risk doctor informed us that we needed to go to Tufts Medical Center immediately for them to induce labor and deliver. We explained our insurance situation and he was outraged. He actually called our insurance company himself and spent over an hour and half trying to get through to the correct person to insure that there would be coverage for the delivery of Connor in Boston.

I remember the whole process being such a nightmare. How could they not want us to have the best care for our baby? There were no other pediatric cardiologists in the area so it wasn't like we really had much of a choice. The only one actually covered in their network was about 2.5 hours away.

Thankfully it all worked out in the end with the help of an amazing doctor and the office manager at the pediatrician's office.

I have since learned that you literally have to fight for coverage on many different things. They will try to reject as much as possible just to see if you will pay. Hospitals, doctors, etc. submit under incorrect codes a lot and insurance will not accept the claim. We were triple billed our deductible for Connor's birth. We were billed by the hospital, by the specific doctor that delivered, and again for Baby Boy Murphy. It took months of phone calls to clear this up. The hospital even sent us to a collection agency even though we kept trying to explain that they were billing us for Connor Murphy and for Baby Boy Murphy. I believe that this situation has finally been resolved. I think I got my last bill for Baby Boy Murphy about 2 months ago and insurance finally paid the bill. I can't be certain about that but hopefully I will not receive another bill as it is now 21 months later! 

As soon as we were introduced to Early Intervention, we were told to apply for Katie Beckett Medicaid which in the State of NH is not financially based, but based only on Connor's medical needs and his finances. We were told that due to his mulitple Diagnoses he would automatically qualify and they would reimburse up to 6 months in previous medical bills. They would cover deductibles, co-pays, prescriptions, etc. that the primary insurance did not pick up. Sounded perfect to me since we were already spending a ton on our medical bills. Turns out it was not so easy. After waiting over 4 months to hear anything from them we received a rejection letter stating that Connor was not eligible because he had already had his heart surgery at this point. This really would not have bothered me but after everything else we had been through with insurance I was ready for another fight and since I had been told he would automatically qualify I had to understand why he didn't. So I decided to appeal the decision.  Several of his doctors wrote letter to Medicaid showing why Connor should qualify as he had also been diagnosed with the Ocular Albinism. Once they received this paperwork we received a letter within 2 weeks advising that Connor did qualify.

I guess my moral of this story is to always question the bills you get from doctors, hospitals, etc. if you are unsure. They really do try to see what they can get away with. It is certainly a pain to fight them on the claims, but if you keep at it and keep calling you may just find that there really should be covereage.

In the end it all worked out for us, but has certainly been stressful along they way!

Day 27 - Splashing in the Water!

Today's common topic for 31 for 21 is "What I wish people would understand about Down Syndrome." That is an easy one: I wish people would understand that people with Down Syndrome are people just like everybody else. Despite some extra challenges, Connor is a "normal" toddler who likes to do "normal" toddler things. For example, Connor loves splashing in the water.

Bathtime is one of his favorite times of the day!  He loves to splash and color on the sides of the tub. He uses cups to rinse himself and even pours the water over his head.

Connor loves to play and splash in his little pool in our backyard....

He also enjoys swimming in Pa's nice warm pool. This past summer he spent a lot of time hanging around the stairs splashing and playing, but also enjoyed riding around in tubes and splashing along the way.

We also find Connor splashing in the toilet when someone forgets to shut the bathroom door and in Loxi's water bowl when we forget to hide it on the counter! I don't have any pictures of this as since I am running after him to remove him from the nasty situation =)

Day 25 - Giggles

Connor gives some of the best giggles and smiles!  He truly is a very happy kid =) 

Day 24 - Sibling Similarities

Though there are several common physical characteristics among people with Down syndrome, not all people with Down syndrome will have all of those characteristics and the ones that they do only make up a small portion. When I look at Connor, I can honestly say that all I see is my son.  Connor is more like his sister than he is different. When Makayla was born everyone who saw her said she looked just like her Daddy and her Pa. When people saw Connor for the first time, they said the exact same thing, only they also added that he looked just like his big sister too. As the grow, they have both changed and although Makayla still looks a lot like her Daddy, she does now look a little like me as well. And the same is true for Connor. Everyone who has met either one of them immediately knows that they are a Murphy! Yet at the same time people can see big similarities between Connor and his cousin Madi. So they do have some Saucier traits as well =) 

Makayla and Connor both started out with beautiful big blue eyes. Makayla's have now turned to a dark brown just like mine. Connor's are still blue, but the blue is fading. They both have smaller than average head sizes, but again that is something they get from me. I can still wear kids sunglasses and hats!  They both have the cutest ears. Makayla has mastered what I call the Murphy look giving this glare when she doesn't want to do something or doesn't think what you say is funny. Connor is just starting to give these look too. I think we are in big trouble as they both grow up.

So while Connor does have some of the typical characteristics such as almond shaped eyes, small nose and ears, and small hands and feet, he also very much looks his other family members. Just look at some of the pictures below comparing Connor to Kayla.  In case you can't tell, all the picures have Makayla on the left and Connor on the right.

They both started out in the NICU

Had the same chubby cheeks when coming home from hospital for the 1st time

All bundled up

Adorable when sleeping

Tummy Time

Smiles

Little Chief