Miller Time: Busy, Busy, Busy!

Friday, February 8, 2008

Busy, Busy, Busy!

I wake up to the small earthquake in my bed again! Yes it is Mason and I have to get up. He has school. I am so dreading going out and facing the cold weather! So I open the door and my jaw dropped! It has to be the most beautiful day I had seen in months! The sun was shining and it felt warm on your skin. Wow what a little sun will do to you! It was an instant pick me up! It was going to be a great day, busy but great. I must had been in an exptional good mood because I decided I was going to brave the mall and take all the kids by myself (well I invited Lisa but she flaked)! The sun must have really took a toll on my head, I never take the kids by myself anywhere. It turned out great, my kids were awsome, plus they did not have a nap! I could'nt belive it. Since they had such wonderful behavor and let mommy get her dress and Dylann's for the funral, I let them make a Build-A-Bear. They loved it! Cachers was so amazed as they filled up the bears with the stuffing and Mason was so excited he got to name his bear. He then later decided he wanted Cachers dog, and Cache could really careless. It is now Mason's best buddie named Sandy, after our previous dog. It has now taken the place of panguin. At least for now.
So later in the day my little nephew Thomas wanted to come over and play. As I opened the door I began to laugh. This is what he looked like...

Yes that is the hood to his coat on his head. That is all he needs to stay warm because the heat comes out of his head. Well as you can imagin Mason thought this was the coolest thing and this is what happend next...

They are funny little kids! I love them! So the rest of my night has been spent watching my cute little niece and nephews so Lisa could scrapbook. I now she will need this break when she has my kids for 4 days! I also have been getting ready to go! I am not nearly where I want to be, but I will get there!

Todays Rating: Busy, Beautiful, and Fun! ;)

3 comments:

Kelly said...: Thanks for watching Lisa's kids so she could entertain me while we scrapbooked. You need to come with us next time!; February 8, 2008 at 11:36 PM
Lisa said...: Thanks for watching the kids! I am excited to watch your kids. I am sure it will be tough at times, but I am on a mission to be the kids favorite Aunt! Oh need wait mission already accomplished. I agree, you need to come with us next time - even if you don't scrap, just come hang out and talk.; February 8, 2008 at 11:46 PM
Melissa said...: Yeah I have givin up on the whole scrapbooking thing! Let me know of some other event I can go to and I am there!; February 10, 2008 at 10:43 PM

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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

Friday, February 8, 2008

Busy, Busy, Busy!

3 comments:

Come What May and Love It

How Two Made Six

Our Long QT Syndrome Story

Cache...Living with Long Qt

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