Tuesday, August 31, 2010

My 30th-Best Yet. We are all created to be different.

In our house we like to call it your birthday weekend, where you get to have a whole weekend to celebrate your birthday.

My 30th birthday weekend started like this, Saturday morning I got to sleep in and when I got up and came downstairs there were flower and gifts waiting for me. From there Nathan, Zachary and I went to Zach’s friends bday party. We stayed there for about an hour then I got dropped off at a spa to have a manicure and pedicure, which was wonderful by the way. I was picked up from there and brought home to pick up my gift cards to go shopping for as long as I wanted! After shopping for a few hours I came home and we got ready to leave for our close friends annual Jimmy Buffett party. It was a full day and I loved it.

Sunday Nathan arranged for me to go with my best friend, to look at her wedding photos (she just got married this summer), I knew I needed to be back by 2:45pm or so to get to my parents house by 3pm to have dinner and cake to celebrate mine and my brothers birthdays as a family. When I got home around 2:45 it all made sense why Nathan had been acting so strange and my house was so clean this weekend, my house was filled with all my family and friends!!!

Nathan didn’t miss a thing and with help from my family and friends every detail was covered. There was my favorite food; burritos and they called them REN-I-TOS. Chocolate Martinis, called CHOC-NAY-TINIS. My favorite wines that he made labels for and called REN-EE-SLING. Chips and salsa from Chili’s. Snack-mix, and the most AMAZING cake ever made by my friend Jess.

There were poster boards filled with pictures of me and timelines about what happened the year I was born. People took a quiz about me, wrote funny memories of me and made silly comments about pictures of me. Nathan also created a “mixed tape”/play-list for my iPod, it was 2 of the top songs every year from 1980-now. It was so much fun to hear the evolution of music. Nathan also arranged for everyone to get me the gifts I really wanted!!! I absolutely loved my weekend it was amazing and I could not have planned it better.

This weekend really did open my eyes to so much. I got to see how loved I am, first by my husband, then my family, and all of my friends. One of the things that jumped out at me about my party was, as I have gotten older I have come to realize that a small quality group of friends means so much more than being popular. I may have not had 100’s of people at my party but all the people that mean something to me (and could make it) where there and that means more to me than any large number of people could.

I also learned that we all see our journey through life differently. One of the things Nathan had people do was write down memories about me, they then read them out loud to me. It was interesting to see how people saw me and what memories stuck with them. I couldn’t even remember some of the things people wrote about me, which opened my eyes to how differently we all see life.

We were all created to be uniquely different in so many ways; none of us are the same. The world may look at our kiddos and see something visibly different but they really are no different than you or I. Just because people may look, move, sound or act like each other doesn’t mean they are, we were all made to bring praise, glory and honor to God in a way that the person next to us never could. We need to remember and know this to be true about our children weather or not they can walk, talk or feed themselves. Our children bring praise, glory, honor and joy to others and to God in ways we will never fully understand.

Sunday, August 15, 2010

Extreme Home Makeover...for EVERYONE!!!

There are so many overwhelming things when you are raising a child with special needs, the actual weight of Zach is one of my biggest concerns.

We bought our house a year after getting married when we thought it would just be us for awhile and we thought it would be perfect for a small family when we decided to start one. A month later I found out I was pregnant. We thought this little house would be perfect; it had 3 bedrooms, plenty of room for lots of toys and a big yard for our coming little one to run around.   

It all seemed perfect. We got a great deal on the house (or so we thought before falling house prices the last few years) and we were now ready and starting our family, but life can flip on you in a moment. I now see my house as a burden. I see it as an obstacle for Zach. Our little house and all its levels makes for small spaces for Zach to move around and explore. He has to be carried from floor to floor, and each floor is a small space so moving things around like walkers and wheelchairs just isn’t effective. 

I pray he will one day walk and be able to get up and down stairs, but for now he continues to get bigger and our house is not losing any of its 38 stairs (20 inside, 18 outside) to maneuver in/out and around our house. 

It’s pretty amazing how life works. The way you think you are making plans for the future, and God decides He has a different way, a better way, a way you may never understand.   

You start to realize how even the things you never thought about before, like stairs, can make every thing ten times harder. How liking your neighbors just doesn’t matter when your child only has one small room they can get around in your home. How having a big yard doesn’t matter when your child can’t run in it. How you never thought God would need to work on your character in this way. How you didn’t realize you needed to be ready for change in every area of your life. Even the small things that didn’t seem to matter before, like the floor plan of a house, will need to change.

It seems so simple. It’s just a house, but what are we supposed to do now? What is best for our family? How will we afford to change it? Life comes up with so many questions, some of them easy and some of them hard. Whatever life throws at you it’s up to you to make the best of it. I have figured out how to make the best of this one…Extreme Home Makeover, for everyone!!!

Friday, August 6, 2010

Nathan's (part 1) blog about our trip to Palo Alto, CA to discuss Infantile Spasms/West Syndrome

Renee and I were invited to participate in a parent advisory board/panel on Infantile Spasms (IS). It is a rare disease and according to InfantileSpasmsInfo.Org it’s “an uncommon epilepsy syndrome that typically begins in infancy. Also known as West syndrome, it was first characterized by Dr. William James West in the mid-19th century as he sought help for his own affected child. Infantile spasms is considered to be a “catastrophic childhood epilepsy” due to the difficulty in controlling its symptoms and the developmental problems that can occur as a result of IS. Infantile Spasms typically begins in the first 4 to 8 months of life and is characterized by flexion (bending and jerking) of the trunk (torso) or neck and extremities (arms and legs). An episode can range from a subtle head jerk to a flexion that lasts for a few seconds. Most often, the spasms occur in clusters.”

The Parent Advisory Board Meeting was organized and funded by Questcor Pharmaceuticals, the makers of Acthar gel (ACTH), which has been considered the “gold standard” of treatment in the child neurology community since the 1950s. I clearly remember Zachary’s neurologist and the head of the neurology department at Children’s Hospital Denver telling me personally about the “gold standard” treatment consideration for ACTH when Zachary was in the hospital for his seizures.

The discussion and parental input focused on several issues - raising awareness for Infantile Spasms, considered a Rare Disease; creating a community for those who have a child with IS or are considered IS “graduates”, those whom medication helped stop the IS; spreading education and information about IS to parents, pediatricians, and child neurologists; giving back to the IS community; and discussing creative efforts surrounding Infantile Spasms Awareness Week in October.

The panel took place over the weekend of July 31 and August 1 in Palo Alto, CA. There were a total of eight families in attendance. The first evening, we all went out to a dinner to have a casual “meet & greet” experience. Family friends (and fellow Coloradoans) Matt and Tamara Cochran (Episode 10 & Episode 11) were in attendance as well as Chris and Megan Daniel who we met at the FDA hearing.

On Sunday, the formal panel took place, opening up with each family sharing their particular story and journey with Infantile Spasms. It was very interesting to hear each family’s story as each shared a common tale of what they experienced with IS exhibiting itself in their child – a quick spastic movement, bobbing of the head, jerk of the arms/legs, body moving in jack-knife fashion – and these movements happening in succession for a time, called clusters in the IS community.

What surprised me was the vast difference in outcome with the families who had success with IS medication stopping the seizures. Several families’ children developed normally and would be considered “typical” on all levels of development today. Others had underlining conditions such as cerebral palsy (like Zachary), or other brain issues.

Although IS was first medically chronicled in the 1800s, there still is very little information on it. As a rare disease, it affects about 1 out of every 3,200-3,500 children.

On average (45 out of 50 children affected) spasms appear for the first time between three-months to a year-old. According to the InfantileSpasmsInfo.org website, about 70% of IS cases are caused or linked by something to do with the Central Nervous System, brain development abnormalities, or genetic abnormalities.

For Zachary, the underlining cause was the severe brain damage (cerebral palsy) that occurred around his difficult birth.

But in 30% of cases, there is no known cause, and these children have the greatest odds of living a developmentally normal life.

Regardless of the cause, once diagnosed with IS, the goal of any neurologist is to get the seizures stopped as soon as possible. With each “cluster” of seizures, the child is experiencing some additional damage to their brain.

Our personal journey with IS, brought us to a neurologist who was very good and very professional in his care of Zachary. The neurologist wanted to take an aggressive approach to get them stopped immediately, but also be safe in medicating our child. We started on a three-week stint of Vigabatrin/Sabril (recently approved by FDA, but at the time Zach took it, 2007, it had to be purchased through Canada). This did nothing for his seizures. Our neurologist advised us of the “gold standard” for IS treatment, an injectable hormone called ACTH or Acthar gel, as labeled by Questcor Pharmaceuticals. We were advised of the side affects – significant weight gain, possible elevated blood pressure, and I think they told us diabetes too, but our neurologist assured us Zachary would be strictly monitored during treatment to make sure he would be safe.

It was a daily, one-shot injection. After the sixth one, Zachary’s seizures stopped completely. That was Nov. 6, 2007. To this day, he remains seizure free.

After the family stories, the panel switched gears to discuss the history of Questcor as a company, their commitment to the IS community in raising awareness, and ideas for Infantile Spasms Awareness week coming October 11-17, 2010, and for future years.

…to be continued…

Tuesday, August 3, 2010


I have been searching for a way,
A way to have a voice.
A way to be a voice;
A way to hear his voice.

I have been searching for a way to figure out what it is I am feeling.
To figure out if I am happy, if I am sad or if I just am.

I have been searching for a way to be the woman I want to be,
The wife I know I can be,
To be the mom he deserves me to be.

I have been searching for a way to be a friend again,
One who laughs and loves with all her heart.

I have been searching for a way to know myself better,
To love who I am and to learn from my past.

I have been searching for people who know and understand things I go through everyday,
people who understand the loss of dreams, yet always search for hope.

I have found hope.

I have found it through the people who open their lives to us,
Through the families who have become the voice for their children.

I have found it through the strength I see in mothers who never leave their child’s side; Through the friends who are always there no matter what you’re going through.

Through the people who have experienced tragedy and have come out on the other side filled with hope and love.

I have found hope through all of you,
And I thank you so much for the love and support everyday.

Monday, August 2, 2010

Vlog-Zachary's Lying

So I did my 1st Vlog.  It's about Zachary and even though he is functionally non-verbal at this point, he can still lie to me.

Check it out at http://www.exceptionalfamilytv.com/blogs/producers/nathan/renees-vlog-zacharys-non-verbal-lying