Monday, October 31, 2011

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

















Sunday, October 30, 2011

Day 30 - Helping out around the house

Connor loves to help out with the family chores. He makes these times much more enjoyable since he is so curious and funny about it.  He loves to clean the floors and does a great job sweeping with his belly during his inchworm crawl =)  He loves to help vacuum and chases me around everywhere that I go, he will even pull the chord out and bring it over to me when I am ready to move to another room!



Connor helps mow the lawn and rake the leaves.



Connor's absolute favorite job is to help fold (and unfold) the laundry.



Now that he is standing he loves to help change the sheets on the bed and helps tuck them in on the bottom. He even likes to help clean the toilets but I try to keep him away from that job!

Saturday, October 29, 2011

Day 29 - Daddy's Boy

Connor and his daddy are great buddies!  Connor smiles whenever daddy walks in the room. He loves to show off his new skills that he has been working on as soon as daddy gets home from work. No matter how grumpy he has been all day, he always gets so excited to hear his voice and wants to give him the biggest hug.  One of Connor's favorie hobbies is helping daddy with his latest construction project.  To be honest, I am pretty sure that when Connor is "helping" daddy, they get about ten minutes of productive work for each hour of time they spend together, but they are having so much fun, I can't seem to have a probelm with it. When they are not working on the house, they love to hang out and watch sports. Sometimes I think his next words will be "GO PATRIOTS!

Daddy was there supporting Connor from the very first moment and has been there for him every step of the way since then. After Connor was born, they immediately took him to the NICU for testing and Jeff went with him right away because we did not want Connor to be alone. They both love each other so much and I know that is never going to change.


Daddy watching all of the monitors in the NICU

Daddy cuddling with Connor and Makayla

Daddy and Connor playing

Daddy and Connor in Disney World

Daddy and Connor at the beach

Friday, October 28, 2011

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!

Thursday, October 27, 2011

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 =)

Wednesday, October 26, 2011

Day 26 - Aunts & Uncles


As I have said in previous posts, Connor is so lucky to have such an amazing extended family. That continues on to his aunts and uncles. They all love him very much and he adores them as well.
Connor loves to hang out with his Uncle Mike and watch sports whenever he comes over. Connor shows him some of his best smiles and Uncle Mike can always get a giggle out of Connor!  I am looking forward to Uncle Mike teaching Connor how to play baseball when he is a bit older. I think they will be great buddies forever.

Connor Apple Picking with his Godfather, Uncle Mike

Connor doesn't get to spend much time alone with Uncle Andy so they usually end up playing dolls together with Makayla. When they do get some time without her, they enjoy floating around Pa's pool together. I look forward to seeing Uncle Andy teach Connor to play football and show him around the gym.
 
Connor with Uncle Andy - My uncle says "I lift things up and put them down!" =)

Connor loves it when Auntie Katie comes to visit, although again can't seem to spend much time alone with her. Makayla sort of takes over!  In addition to being a great Godmother, Auntie Katie is also a Speech Pathologist and has come up several times to visit/work with Connor on his speech. She has been a great resource for us.  Connor especially loves it when she sings to him!

Connor with his Godmother, Auntie Katie on his 1st Thanksgiving

Connor smiles and reaches for Miss everytime she walks in the room.  I am sure he will be choosing her over me everytime just like Makayla!  I can't complain too much though because it is always good to have a cool Aunt.  He loves to sit on the floor and play games with her and she is always looking out for Connor.

Auntie Miss visiting in the hospital when Connor was born

Tuesday, October 25, 2011

Day 25 - Giggles


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







Monday, October 24, 2011

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