Miller Time: Things not to be forgotten...

Monday, October 13, 2008

Things not to be forgotten...

So I have a few things I wanted to blog about but I have been sidetracked with everything. Now the tricky part is remembering everything...

Mason was Kinderbug a few weeks ago. Which was super fun! The teacher gives you a list of things you do each day so this is how is went down. Monday we took in a very cute poster of pictures of him and his family. With a list of a few of his favorite things which included, pizza, soccer, cheeseburgers, xbox, and of course his family. Mason always says to everyone "I love my family!" It makes me smile every time! Tuesday Mason was so sick and had to miss which was the day you bring your pet in. It was also Green day and he was so upset me missed. Wednesday was your favorite book. He took Fish Out of Water, a Dr. Seuss book. Thursday was bring your favorite treat or food so of course we got 2 cheese pizzas from Little Cesar's. Friday was tell something special about your family. So Cache came with us to school and we told them all about him being deaf and taught them a few sings. It was so much fun! Mason always asks if Dylann can come to class now! The other day Mason asked how babies get in the belly. I was caught of guard and really didn't know what to tell him. So I said God puts them there, and of course a follow up question "How?". It's magic! Mom there is no such thing as magic! That's where I changed the subject! I need to come with a better explanation!

York won his first soccer game today! He was so happy he called me at work to tell me! I wish I could have been there. His dad said he played awesome! One reason I hate my job! I am a total soccer mom! I love to watch yell and cheer! I can't help it! I have a passion for them game since I used to play!

Dylann is getting so funny with all her talking. She is so sassy! Where did she get that from? She now tells you no! I will be like ok time for night night and her hand will go up and say noooo! In a very sassy tone too! I love her! It is so much fun having a girl! She loves her dolls too now. She takes them every where and they are called "babies". She also says "so cute" like "so toot". When we took Cache to the doctor the other day she let him carry the boy twin and she got the girl twin. It was cute and yes I let my son play with dolls!

Cache besides the obvious now says and signs uh-oh. It is funny! I love it! I swear the other day he said his version of I love you while getting on his bus for school which sounds sort of like "ahhh-uuuuu" in a yelling tone. Still super cute and almost made me cry! Probably was just him yelling, but I can pretend! LOL!

I am sure there is a million things I should have posted but didn't so that is all I can remember!

1 comments:

Lisa said...: Your kids crack me up - they are so fun! Mason and his complete and total sugar addiction the first words after I ask him "Do you want a snack?" "Yes - candy!" He is a kid after my own heart.

I love Dylann and her babies ... the fact she has to sleep with ALL of them.... so toot!

Way to go York - kick some soccer booty!

Cache - oh how I love this little kid ... he is so cute and fun to be with. He came in and signed 'socks' because he wanted to go outside and play - it was cute!!; October 16, 2008 at 10:34 AM

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Our Long QT Syndrome Story

My teenage years were full of sports and exercise. There was not a day that went by I didn’t have some sort of game or practice. My days consisted school, track, soccer, a jog, and finished up with some strength training. Never would you have guessed my heart was broken. I was older, married and about to have my second child, Cache. I was off to my usual 32 week check-up at my obstetrician office. That was the day our lives changed forever. It was that exciting moment when you get to hear that slushing heart beat and know that the big bump in your belly is this living being in your body. That slushing sound turned out to be my nightmare. My doctor explained to me that the baby’s heart rate was far too low and that my son had something wrong with him. This is something you never expect to hear when you are having a baby. Babies don’t come out sick? At least that was my naive way of thinking. My doctor told me to walk over to labor and delivery and he would meet me there as soon as he was finished with patients he had in his office. When I got to Labor and Delivery, they strapped me up to all these machines, and I had instant panic around me. Nurses were rushing around and almost screaming. All I could do was sit there and wonder what was going on. Next thing you know I was being prepped for an emergency C-section. That was until my doctor walked in the door and told them all to calm down. It was a sigh of relief. My doctor performed an ultra sound along with what felt like another 30 doctors. They all agreed with one thing, my baby was fine for now and needed to stay right where he was. He stated that there was something defiantly wrong with his heart, but until he was born they would not know what. After 36 weeks and lots of daily monitoring and doctor visits, I was induced and my beautiful little boy Cache came into the world fighting like a champ. The next few hours were about to change our lives forever. Cache was diagnosed with Long QT syndrome a few hours after birth and was immediately transferred to Sunrise Children’s Hospital. I was discharged and headed there to figure out just exactly what was to happen next. There we were greeted by the pediatric cardiologist who had done an ultrasound on Cache’s heart in utero. He began to explain the details of Long QT syndrome and how they treat it. He then told us they could not treat Cache because his heart rate was already dangerously low. To fix this, our son was to have open heart surgery and have a pacemaker placed. A pacemaker, isn’t that for old people? We were numb and just in a really bad dream. Three days after our perfect son’s birth he was placed with a pacemaker in his little tiny tummy. I remember that day clearly and as I held him waiting for the surgeons, Landslide by Fleetwood Mac was playing on the radio. It was a Saturday morning and we meet the surgical team. They answered all are questions and we walked my infant son down a long hall. We gave him a kiss and we said good-by. The hospital waiting room was a ghost town. We waited, and waited, and waited, and then did a little more waiting. I clearly remember seeing the whole surgical team walk into the deserted waiting room. My heart sank and I think my knees nearly hit the floor. Why were all of them coming in? Why did they all need to talk to us? As we approached them the head surgeon said “Everything went great.” The best words we had heard our whole lives. I am not the “reach out and give a hug to a stranger” kind of girl but I did just that. The next few weeks, after Cache’s pacemaker placement, had its up and downs. His heart rejected the pacemaker and fluid began to build around his heart. They eventually had to go in and put a drain in to his heart to relieve the fluid. We had trouble with feeding and jaundice. It was three weeks to the day that my son was able to come home and have his two older brothers hold him for the first time. Life with Cache has proven to be a challenging one. Cache never passed a newborn hearing screen and while most parents would be freaking out about this, we had much bigger fish to fry. We were told at the time of his birth that Cache could have a very rare form of Lonq QT Syndrome called Jervell and Lange-Nielsen syndrome. This rare form of Long QT Syndrome causes sever to profound hearing loss. At about the age of three, this was confirmed through genetic testing but Cache also carries another genetic strain as well, Long QT Syndrome type 1. No one, as of then, had ever carried these two genes on the national registry. He had a double dose. It was also confirmed that I too had Long QT Syndrome type 1 and so did my other two biological children. Through the years Cache has had many obstacles he overcame. At the age of 2 ½ he had a deadly arrhythmia and was lucky to be alive. After that arrhythmia, it was then decided Cache needed his pacemaker replaced with an Implantable Cardiac Defibrillator (ICD) and have a left cardiac sympathetic denervation. It was a little over a year after the ICD placement in his stomach that it became infected. The ICD was removed and he was placed in the Pediatric Intensive Care Unit for a week until it was decided that he was big enough to have an ICD implanted in his chest. A few weeks later he had to go back in and have pieces removed that had been left in him on accident. Cache is a thriving child and plays like any other child. We have been very blessed and we all consider him our life saver. He not only saved his Mom, brother, and sister, but his Uncle and three cousins. I am the luckiest Mom in the world to be Cache’s Mom. He has given me far more then I could ever give him. Cache inspires people with his amazing smile, big blue eyes, and love of life. Cache has taught us and everyone surrounded by him that life is far too short and life is more than just the daily grind. It is about living life to the fullest and making sure those who you love, know you love them. It is about today, and living in today, not about what can happen in the future. We have today and that is all we need to get to tomorrow.

Miller Time

ERIC-MELISSA-YORK-MASON-CACHE-DYLANN

Monday, October 13, 2008

Things not to be forgotten...

1 comments:

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Our Long QT Syndrome Story

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