Miller Time: Happy Birthday Cache!

Monday, June 2, 2008

Happy Birthday Cache!

Yes I am really late on this post! It has been very busy! Caches B-day was the 18th! Although we did not celebrate his b-day on his b-day he still had a good one! I won't go through Caches arrival to the world because if you read my blog you will see it right. As I've said, he is my little hero! He is such an amazing kid and I feel so lucky to have him! Although at times my very mischievous child will send me to my limits I still can't help but to smile at him! At any given time you will see Cache wondering out my front door with no one trying to sneak away! Lucky for me I have great neighbors who look for him and seem to bring him back in the 5 minutes that I have turned my head! I really need to get a sign out front that says deaf child! Side note to self-check into that!

Cache chilin in our pool in Vegas!

Cache has had such a great year and has come such a long way since we first moved back! When we moved to from Vegas Cache was only 18 months. He was not walking, talking, and definitely was not where he was supposed to be! After much work, a new pediatrician, and months of worries Cache had finally been diagnoses with being deaf. Which was no surprise to us. The funniest thing about it all is when the first audiologist told me that he was deaf I was relived! See there was so much worse he could have... we went from a brain tumor (the scariest and I will never forget braking down at work after coming down from the oncology unit), to autism, to deaf. The audiologist kept telling me it was ok to cry and I wanted to laugh right at her! Deaf, honey I have been through hell with this kid, deaf was nothing!

Cache when he was in the NICU after he was born, he got to wear shades!

Cache has hit so many mile stones in this last year. He started walking at about 20 months but is still uneasy on his feet. You will always find some bruise on Cache because he falls all the time. The poor kid looks like we beat him sometimes! And we are always yelling at him so he can hear us which we now tend to do with the other kids! I am sure my neighbors think we are crazy! Since he has started school he has also grown so much! He rides the bus everyday and he loves it. He is starting to Babel like a baby which makes things nice because he used to just scream. He will copy your words and although he may not get it out right he will have the same amount of syllables. Cache has an incredible smile and amazing eyes. It will melt your heart! I am looking forward to the next year to see him grow more like he has this year.

Cache used to fall asleep in the middle of the room when he was little even if there was a million things going on!

Mason showing his little Bro how to eat a Popsicle.

My favorite pic of the little boys at the beach house

Happy Birthday my little Hero!

We love you very much!

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, June 2, 2008

Happy Birthday Cache!

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