Miller Time: Here comes Peter Cotton Tail

Thursday, April 8, 2010

Here comes Peter Cotton Tail

Easter time again. This year things were a little more scaled down, but we still had a great time. We spent Saturday with some of Eric's family. We went bowling (I beat Eric on the first game! hehe). Although Starla's husband, Scott, dominated the second game and bowled over 200. Then we went over to his sisters, Starla, who is totally awesome had things all ready for the kids to dye eggs. She had all sorts of things for them to use and they were loving it! They then hunted for eggs in their back yard. Her older ones are so great and helped my little ones find them all. Nothing like seeing BIG guys caring around little kids. Starla has some pretty great kids and I have really enjoyed getting to know them. We also played some Rock Band, but I am a little rusty at the singing. I need to get back in the swing of things since our XBox is all fixed now. We dropped York off at his mom's house on our way back home. We got home so late, Eric and I made the kids some grilled cheese and tomato soup for dinner. Not fancy but the kids loved it. We were all beat and the kids finally crashed so the Easter Bunny could come.

The next morning Mason was the first one up. Which is no surprise he is like his Dad and is an early riser. We told him to wait but he could go look at his basket, but of course he wanted everyone to wake-up, so we did. The kids loved their baskets. The bunny brought them all some clothes and the boys a game, and Dylann some Princess hair supplies. Of course he brought a bunch of candy too. The bunny hid eggs all over the house so the kids raced to find them all. Dylann only wanted the pink and purple ones. We usually have my family over for dinner and we do a HUGE hunt with all the kids. This year everyone had plans so it was just Eric and I with the little kids. It was kind of nice but lonely all at the same time. The bonus of this was that Eric's mom sent us a wonderful dinner from Honey Baked ham. So all I had to do is warm it up and put it on plates. It was very nice and super yummy. None of us got dressed up in our cute Easter cloths which I had bought. It was a good Easter, but I wish we could have gotten my family together. It is kind of sad how life gets so busy and you can't make time for what matters the most. I hope you all had a wonderful Easter, as I know I have been blessed so much this year already.

1 comments:

Kellee said...: I want to come to your house for easter. Looks like fun!; April 22, 2010 at 12:11 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

Thursday, April 8, 2010

Here comes Peter Cotton Tail

1 comments:

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How Two Made Six

Our Long QT Syndrome Story

Cache...Living with Long Qt

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