Miller Time: April 2009

Tuesday, April 7, 2009

Almost...

I am almost cuaght up on blogging now! 1 more I need to post. You will have a little light reading now if you are bored. Have fun!

Silly Boy!

He is so funny, but man this does worry me a little!

Note Dylann's flip flops!

Cache Always has a Flare the Dramatic!

Ambulance rides are fun, but not when they are with your child! March 26th, was a long night. I had come home from work and was playing on my laptop. Cache was sleepy so he crawled on my lap and started to drift away. A few minutes later he did a huge jolt, which at first I thought was a defibrillator shock from an arrhythmia. Then he started to do what I like to call a seizer. Rapid eye movement, funny mouth movement, and very stiff like. York was super fast and very good when I told him to get the phone and call 911. I am glad he was there. When we got to the ER, because I love to be at work, they were very focused on it being his defibrillator. The next day in clinic we concluded it was not a shock. After discussing this with his pediatrician she wants him to see a Neurologist. We have an appointment next week. Let's hope it all goes well and I don't have to deal with another issue! That kid will be the death of me, I love that little Monster!

Cache and his IEP

I have come to the conclusion that some teachers in Special Education need not teach Special Education. There is a reason it is called "Special Education" and that is because the kids need extra care. Hint to teachers... that is why you spent all that time in school... to work with kids that are in need of extra help. We all know I have issues with Cache's teacher but I think this one has topped them all. I wasn't expecting much and I they have successfully pist me off. To sum up the meeting in a quick sentence... They pretty much told me that he was mentally retarded. (Not to offend anyone, but that is what was said)Last time I check being Deaf did not qualify as being mentally retarded. Let me recap a few things for you.

Cache was diagnosed as being Deaf at the age of 2 1/2.
He has had his hearing aids for a total of 18 months.
He has been in school a total of 9 months but there was a 3 month break in between.

So they can't figure out why he can't speak? Hummm! Do you know of many 18 months old that can speak clearly and well? Yeah me either. I am also pretty sure that it is pretty hard to process language when you are not used to it.

They want to just give up on him and send him to a full sign school with no English speaking language. Let's put this on record, I will never care if Cache can not speak a single word, he can but... He is Deaf, who cares? Seriously! He can be and do anything he wants in life and he will. This kid has more drive than any child and some adults I know. He is amazing.

Cache has more then just a hearing loss, he is a heart kid too. I am grateful to have him and grateful for every day he gets to have another day at life. I am not going to worry about if he can speak like the hearing world. Don't get me wrong, I will do all I can and what I think is the right thing to do, but this is the last thing I will worry about.

Cache can speak and he tries so hard. You just need to be patient and work with him. I do not understand why they don't see it. To just give up, it has been a great disappointment.

Cache with my glasses, he is so silly!

March 20th 2009... A day not forgotten

The day Mason lost his first tooth!

He even let me pull it out. It was pretty funny. The Tooth fairy brought him a whole $3.00. He lost another the next week, but the Tooth Fairy paid out big, a big $5.00.

Once upon a sonwy day...

Here are some shots of the kids on the slide Eric made one day when it snowed like crazy. This was all done when I was at work. I think it took forever to finally melt. The kids had a blast!

Yorky and Dylann

The boys... Mason, Thomas, Callin, and York

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

Tuesday, April 7, 2009

Almost...

Silly Boy!

Cache Always has a Flare the Dramatic!

Cache and his IEP

March 20th 2009... A day not forgotten

Once upon a sonwy day...

Come What May and Love It

How Two Made Six

Our Long QT Syndrome Story

Cache...Living with Long Qt

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