Wednesday, October 27, 2010
Skin camps!
There are 2 of them that I go to, the real names are USEB camp and Camp Wonder but I just tell my friends it is skin camp so they know that I am not talking about scout camp. Camp wonder is ran by www.csdf.org it is in California and it is free to me, I like the guys that stay in my cabin and the doctors too. I get to swim and play ping pong and swim and go to professional baseball games. My mom gets to hang out with the other eb Zachs mom and they hang out at the hotel and in San Francisco. Last year they paid someone to paint their toe nails. I love the counselors and they even have prom night. It rocks seriously. The next is USEB camp in Park City Utah, it is all run by adults with EB. I learned how to play the drums this year and I got to ride the coolest bikes. My mom is too tired to put up any pictures but tomorrow you will see how awesome they are when my mom finally puts the picture of camp up. We were too busy today because we had our school Halloween party and night time carnival. Plus I got to rent a movie!
My new belly button
When I was 3 I started getting strictures in my esophagus, these strictures require a short surgery to make them pop out. My parents decided that it would be a good time for me to get a "new belly button" or a gtube. We were all scared, we wished we didn't need it. Once we got it we realized how silly we were to worry about having one because we LOVE it. It is the greatest thing that ever happened. I had never slept through the night until I got it, because I was always hungry. All of my super nasty medicine goes straight through the tube so I don't have to taste any of it! I am growing huge because I get such great nutrition through it. I am 72 pounds and 56 inches tall. I have always been the tallest in my class. Eating was stressful before I got it, because I always had sores in my mouth and esophagus but my body still needed tons of nutrition. This is a picture of me in the hospital right after I had the surgery. I wanted to go on wagon ride but I was nervous about having my tube on so when my mom picked me up I told her "be careful and good luck" she laughed.
I liked it so much that a year later my Uncle David and Aunt Sandra and cousins Amos and Isaac came over and we had a birthday party for it. My cousin Isaac made a drawing of my body and we played "pin the gtube on me".
I liked it so much that a year later my Uncle David and Aunt Sandra and cousins Amos and Isaac came over and we had a birthday party for it. My cousin Isaac made a drawing of my body and we played "pin the gtube on me".
Tuesday, October 26, 2010
Our EB Family
Zack is taking the day off today so it is my honor to tell you about the incredible group of people that have come into our lives because of EB.
When Zack was first given to us, we were given the name of a young lady who lived in our state who has Zack's form of Eb. I called them and the next day they drove 4 hours with a car full of supplies. I was sooo nervous to meet Elizabeth, I did not know what to expect from someone who was living with EB. Well, there are not really words to describe how I felt when I opened the door and I was greeted by a beautiful and inteligent lady. I was blown away at her humor and strength. Her parents accompanied her and they were equally wonderful. It has been our experiance that EB families are made of some pretty tough stuff and we have LOVED getting to know them over the years. Every 2 years we go to a patient care conference sponsored by www.debra.org. We love these families and it is so fun to be able to spend a week with people truly understand what life with EB is like. I have so much respect for the families and caregivers that we have met. After spending years doing foster care and meeting parents who struggle to provide the bare minimum of care for their kids it is refreshing to see families who are giving 110% to make sure that their EB kids have a great life. EB caregivers are so quick to share any helpful tip or insight,so little information was available from the medical world, much of what we do to care for Zack has come from other EB caregivers. Often a cry for needed supplies will go out over the online support groups, almost instantly offers to help out come from all over. EB is not a cheep disorder to deal with, yet I am constantly amazed at how giving this community is. I am working on getting links to all of our EB friends to the side bar. If you have a minute, stop by and visit a few of them.
The next group in our EB family is the great staff of the Denver Childrens Hospital EB clinic. We love what these doctors have done is establishing a routine of care that makes hospital and clinic trips completely EB friendly. We will be visiting them next week for clinic and the week after for surgery. They are totally worth the 8 hour drive.
We go through more than our fair share of wound care supplies and National Rehab makes that monster such an easy one to tackle. Bill Corman in an angel on this earth, along with the other great members of the NR team. We know what life without them is like and we hope that they will be around forever.
When Zack was first given to us, we were given the name of a young lady who lived in our state who has Zack's form of Eb. I called them and the next day they drove 4 hours with a car full of supplies. I was sooo nervous to meet Elizabeth, I did not know what to expect from someone who was living with EB. Well, there are not really words to describe how I felt when I opened the door and I was greeted by a beautiful and inteligent lady. I was blown away at her humor and strength. Her parents accompanied her and they were equally wonderful. It has been our experiance that EB families are made of some pretty tough stuff and we have LOVED getting to know them over the years. Every 2 years we go to a patient care conference sponsored by www.debra.org. We love these families and it is so fun to be able to spend a week with people truly understand what life with EB is like. I have so much respect for the families and caregivers that we have met. After spending years doing foster care and meeting parents who struggle to provide the bare minimum of care for their kids it is refreshing to see families who are giving 110% to make sure that their EB kids have a great life. EB caregivers are so quick to share any helpful tip or insight,so little information was available from the medical world, much of what we do to care for Zack has come from other EB caregivers. Often a cry for needed supplies will go out over the online support groups, almost instantly offers to help out come from all over. EB is not a cheep disorder to deal with, yet I am constantly amazed at how giving this community is. I am working on getting links to all of our EB friends to the side bar. If you have a minute, stop by and visit a few of them.
The next group in our EB family is the great staff of the Denver Childrens Hospital EB clinic. We love what these doctors have done is establishing a routine of care that makes hospital and clinic trips completely EB friendly. We will be visiting them next week for clinic and the week after for surgery. They are totally worth the 8 hour drive.
We go through more than our fair share of wound care supplies and National Rehab makes that monster such an easy one to tackle. Bill Corman in an angel on this earth, along with the other great members of the NR team. We know what life without them is like and we hope that they will be around forever.
Monday, October 25, 2010
Thanks to EB I am practically famous!
Because I have EB I have been on TV a lot of times! This is the first story about me. I was 4, and when they aired the story CNN decided to show it too. We had people calling us from all over the world. This is how I met a special friend of mine named Don Lord, he is good man who always remembers to send me a card on my birthday. Next a local paper did this story. Lots of people recognized me in the grocery store after this. I got to go down to BYU to see some guys ride a bike for Eb from here to California, they interviewed and put me on BYU TV, I already blogged about that time once. I was on the news one other time but I can't remember why. Then I was on the news for a second on channel 13 and then I got to be on a show called Good things Utah when I was in kindergarten. Last December I got to go to Denver to film a little thing for one of my favorite wound care supplies that Hollister wound care makes. Recently I was on Inside Edition. You can click here. I was not too happy that they called me a mummy but I think the show turned out pretty good. It was fun to film this one, they came and set up huge lights everywhere.
I really like to see myself on tv. It makes me feel good about myself, I think I look good.
This is where I (Zack's mom) get to jump in and say a few things. First off, reading this lets me think Zack has lots of self esteem. I kind of knew he did when he asked to be Captain Underpants for Halloween. Anyone willing to go to school in tighty whitey underpants has more than enough self esteem.
And second, when we first got Zack I searched the internet, as most new eb parents do, for some sort of hope in this scary diagnosis. Quite honestly I didn't find a lot. I found a lot of pictures of wounds, but not a lot of picture of happy eb kids. I did find one that totally made my day, it was of a little guy named Hunter on a bouncy tiger with a huge smile. I wanted so badly to know that in the future my wound cover child would find the same happiness that other kids have. I worried that he would have to live a lonely quiet life. That has absolutely not been the case. Zack lives a life full of fun and adventure and I want other EB kids and new parents to know that this is possible for their families too. This is why we have always taken up offers for Zack to spread awareness on the tv or in the paper or through events.
I really like to see myself on tv. It makes me feel good about myself, I think I look good.
This is where I (Zack's mom) get to jump in and say a few things. First off, reading this lets me think Zack has lots of self esteem. I kind of knew he did when he asked to be Captain Underpants for Halloween. Anyone willing to go to school in tighty whitey underpants has more than enough self esteem.
And second, when we first got Zack I searched the internet, as most new eb parents do, for some sort of hope in this scary diagnosis. Quite honestly I didn't find a lot. I found a lot of pictures of wounds, but not a lot of picture of happy eb kids. I did find one that totally made my day, it was of a little guy named Hunter on a bouncy tiger with a huge smile. I wanted so badly to know that in the future my wound cover child would find the same happiness that other kids have. I worried that he would have to live a lonely quiet life. That has absolutely not been the case. Zack lives a life full of fun and adventure and I want other EB kids and new parents to know that this is possible for their families too. This is why we have always taken up offers for Zack to spread awareness on the tv or in the paper or through events.
Saturday, October 23, 2010
My Adoption
We think we should start at the beginning. I was born just over 8 years ago in Las Vegas Nevada. My birth parents Derek and Lisa were totally surprised by my EB. They came to the decision that they could not give me the care that I needed and deserved so they allowed me to be adopted by my parents Brad and KaDee.
I call Brad and KaDee dad and mom. They are the perfect parents for me. My Dad is so much fun and works so hard so that I can have insurance and so that my mom can stay home with me every day. My mom is strong and smart and knows how to take the best care of me. She is like a pretend doctor.
By being adopted I got to have tons of family members who love me and support me. I have aunts and uncles who only want the best for me. I have grandmas and grandpas who love me and pray for me daily. Best of all I have TONS of cousins! Lots of my cousins live close, I even have one cousin in my school class. I am surrounded by a huge family all of the time. I can feel their prayers for me.
My sister is adopted too, she is my best friend. I even know her birth family and I call her grandma and grandpa my grandma and grandpa. They let me swim their pool, because I can't swim in a public pool because of my EB.
I know that Derek and Lisa were an important part of Gods plan for me, but I am so thankful that because of EB I get to live the life I have in Utah with my family.
National EB Awareness week
Starting tomorrow my Mom and I will be posting everyday to help spread the word about EB. We want people to see how brave EB kids are, we want people to help us find a way to treat Eb, and most of all we want people to see that I am happy living a great life with EB. Everyday we are going to tell you about one way that EB has made our life better. So please come back tomorrow!
Friday, October 1, 2010
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