What did he get into?

practicing

2011-05-24T19:41:00.000-07:00

I am teaching my class how to make a blog. I will show them how to make a picture.

cutting out a wrap

2011-04-28T19:30:00.000-07:00

Yesterday I cut out my own wrap because my mom wasn't home!

My mom is running a marathon

2011-04-25T21:31:00.000-07:00

Last year my mom started running. She ran a a couple 5ks. I ran a 1k with my sister. Last week she ran a half marathon with my cousin. In September she is going to run her first marathon. In November she is going to run a very special marathon. She is gong to run the New York CIty Marathon to raise money for research to help EB go away. She rocks!

My glasses

2010-11-02T15:35:00.000-07:00

2 days ago my Dad was telling me how awesome it was that I never broke my toys or ruined a pair of clothes. Well my glasses accidently got ran over by the car yesterday, I guess things just kind of even out.

The great pumpkin

2010-11-01T19:03:00.000-07:00

At the beginning of October I went with my family to a really great pumpkin patch.
We go every year. Mrs. Pack was my 504 helper in kindergarten and first grade and her family owns the patch. We took our dvd player and watched the Charlie Brown movie about the Great pumpkin.

It was awesome, then we bought a few pumpkins and some squash and went home. I didn't really think much about the great pumpkin after that until last night. We heard our door bell ring and when we went outside we found THE GREAT PUMPKIN on our porch. It was carved and lit and everything!

I think he came to our house because we watched his movie in a real patch.

I am so glad we did not watch a movie about a ghost or vampire in the field.

Skin camps!

2010-10-27T19:57:00.000-07:00

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

2010-10-27T09:34:00.000-07:00

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".

Our EB Family

2010-10-26T13:57:00.001-07:00

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.

Thanks to EB I am practically famous!

2010-10-25T12:27:00.000-07:00

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.

My Adoption

2010-10-23T19:47:00.000-07:00

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

2010-10-23T19:22:00.000-07:00

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!

News - The Butterfly Boy - InsideEdition.com

2010-10-01T16:23:00.000-07:00

News - The Butterfly Boy - InsideEdition.com

2009-10-31T13:09:00.001-07:00

2009-10-31T13:09:00.000-07:00

Asking for prayers for an EB friend

2009-10-16T14:52:00.000-07:00

Update: Spoke with her mom, she said they prayed and then a miracle happened. They no longer need the procedure. Please prayer that she can heal from the damage done at a previous hospital.

7 years ago when we were blessed with Zack we took him to the local childrens hospital, they were of little help. The best thing that they did for us was give us the name and number of a young adult with EB. I called and talked to her mom and they drove 4 hours the next day with a car full of supplies for us. When they got here they showed me how to do wound care and bath him. They were angels. I was worried about what she would look like, at that point there was very little on the internet about eb and I was not sure what to expect. Well, in walked this beautiful young lady with blonde flowing hair, she was amazing. She was intelligent, fun, and feisty!

She called me today and she is in need of prayers. She needs a procedure done, the local hospital was not able to help her, they did not have small enough instruments. The childrens hospital refused her because of her age (she is in her mid 20's). She has been a life long patient of that childrens hospital, which by they way has been all over the news lately for doing a heart transplant on a man in his 30's. There are a ton of reasons why we travel to Denver childrens hospital for medical care.

Please pray that she can find compasionate doctors willing to listen and help her. Please pray for her Mom, who is having health issues at this time.

Blessed with amazing kids.

2009-10-15T21:11:00.000-07:00

And even more blessed that that they like each other most of the time.

"Everywhere in nature we are taught the lessons of patience and waiting. We want things a long time before we get them, and the fact that we want them a long time makes them all the more precious when they come."

For a moment we forgot!

2009-10-14T21:06:00.000-07:00

After volunteering at school I was standing in the parking lot talking with my sister and a few good friends. We were laughing about funny things and funny people when a Mom that I had never met before joined our group. She looked my way and said "oh my goodness what happened?" Zack was standing by me and she was referring to him, but it didn't register that she was talking about Zack. In fact it didn't register to anyone that she was referring to Zack. It was funny, all the other moms looked pass Zack and we were all looking around to see what "had happened". It took a minute for any of us to realize that she was asking about Zack and his wraps. We had forgot for a moment that Zack had EB. It was just kind of a cool moment.

I am thankful that there are people in our life that look past Zack's eb and see how amazing he is, he works hard to do so well in school. So many people that are just getting to know Zack through school have commented lately on just how hard he tries and how he doesn't give up when things are a little bit more difficult for him. A good friend and neighbor who has had Zack over to play at her house often says she forgets all the time that there is anything different about Zack. It is fun to see people get excited over Zack's accomplishments.

Sadly there are a few very ugly people in our lives who are not so happy when things go well for Zack, it is kind of a sad thing to have witnessed. The ugly people that we know are ADULTS! Kids have been so kind and so great to him, but we have seen some adults see Zack as maybe being week, and they take it as an opportunity to attack! It has really been an eye opener. Granted the people that have taken this stance against our family are people who are obviously miserable about their own situations, and those people are few and far between.(I had to get that off my chest)

Back to something fun, we had a great dinner tonight, I think it will be a new tradition. I surprised my kids with the "Halloween cereal". You know, the Count Chocula, Boo Berry, and Franken Berry. My cute kids were so thrilled to think that they could not only have cereal for dinner, but the cereal that they beg for every time we see it at the store. (I did make sure that they both got a multivitamin AND a vitamin c) At one point they were kissing the boxes. It was so fun to have something so simple make them so happy. Have I mentioned that I have great kids? They really are awesome. We had a great night doing something so simple and the more I thought about it the more I realize just how little a role eb plays in our life. Don't get me wrong, we spend hours everyday going through the routines of caring for Zack's health, but we really have a ton of eb free, happy, great moments. Moments that I would have never thought possible when Zack was an infant. The first year of Zack's life was the hardest year of my life. I was so thankful for him, but also worn out, sleep deprived, and sick with worry about the future might hold for him. I wish I could pass on that great feeling to every parent who is handed their eb child for the first time, that even though there child has something that will forever change the course of your family, that there will be moments that make everything worth it. So for those who have stuck by our sides through this thank you! I hope you feel the reward of knowing that you have played a huge part it creating these eb free moments.

Looking forward to this

2009-10-10T16:31:00.000-07:00

Jamie has an incredible voice and is such an inspiration. If you have not heard her sing before here is a little sample.

She is such a classy lady.

I need a reminder

2009-10-09T20:30:00.001-07:00

Next week they are screening for vision at school and I need to go get Zack's new glasses. This week they did hearing screening and I am proud to say that my child was not one of the children that had to be pulled aside to have their ears cleaned out before they could preform the test.

Oh, and I also need to be reminded that on Monday my baby sister will be celebrating a birthday. Lets see, she is 8 years younger than me and I turned 21 last January so that makes her 13. Yeah that seams right. She is just one of my 4 amazing sisters, she lives around the corner and is expecting her second child. (so maybe we are both a little older than I think) I am so blessed to have sisters who are willing to take such active rolls in the life of my kids (I have a couple of great sister in laws too). Like today when I forgot that it was early out Friday. One of my other sisters called from the school to let me know that I was 15 minutes late, but all was well, Zack was with her. I could not raise my kids with out these special women, that do things almost daily for me and my kids.

Pack's Pumpkin Patch

2009-10-08T12:40:00.000-07:00

Going to Pack's Pumpkin Patch in Farmington is a family tradition for us. Not only do they have pumpkins but they have yummy banana and butternut squashes, and weird squashes that Brad refers to a hemorrhoid squash. (they do look pretty weird) They have a free little maze that my kids love, and a giant corn maze that costs, we just may go back for that one.
Zack was not to sure about his 504 aid last year until he found out that she just so happened to be a Pack. She made it so the kindergarten got to take an extra field trip there. How could you not love a 504 aid that not only comes with a pumpkin patch, but can also get you and extra field trip. Mrs. pack is certainly a keeper.

The kids loved running through the maze hiding from Brad and I. Hiding was easier for Brently than Zack, his giant head poked clear out of the maze. It was sooo funny to watch his head magically float along the top of the hay.

When Brad would catch one of them he would scoop them up (an eb friendly scoop of course) and they would squeal with happiness.

Brad is a pretty great dad. He loves his kids, it shows when he plays with them. It shows by that fact that he is willing to wake up long before the butt crack of dawn (that's what he calls it) and work 13 hours a day, 5 days a week so that we can do fun things, go on fun trips, and enjoy a great home. He values having a mom at home for the kids during the day and I am so thankful that I get to be that mom.

For the 30 or so local blog lurkers (don't worry I lurk plenty, but I really have NO idea who reads this) you should really make a trip out there, it's awesome. And the Pack's are great people. They totally didn't charge us for all the hay that Zack took home stuck to his gauze, and they could have because it was close to an entire bail.

Until further notice...

2009-10-07T21:30:00.000-07:00

Zack will be turning his blog over to his Momma, the rigors of first grade are quite frankly kicking his booty. He is putting great trust in me and I don't want to let him down, he did however make me sign contract stating that I would not post on certain subjects that might embarass him, incuding but not limited to the name of the girl that I pack and extra treat in his lunch bag for and what he wears when he sleeps. Zack being shyly narcisitic, prefers to be surprised daily by how wonderful he is and prefers to see it in writing. He has given me a list of things he would like people to know about him. First being that he now leads the class in mad minute math tests. (he's proud little nerd)

The picture has nothing to do with the post, but all post need pictures and Zack chose the one of him eating smores, while wearing a rock'n'roll hoody.

I kissed my 6 year old goodnight tonight...

2009-09-03T20:06:00.000-07:00

and in the morning I will be the proud Momma of a 7 year old. Zack asked me what time he was born and he gave me a little attitude when I told him I didn't know, so my reply was, jokingly "I don't know because I wasn't there". His reaction was so true to Zack's personality, he just said "oh ya that's right" and was satisfied. He has such a logical, rational sense about him. (I did find that he was born just before midnight). Zack has so many wonderful things about him, the way he rolls with some pretty hard punches and hops right back up again.

I say this every year, and I will say it again, Zack earns his birthdays and he deserves his birthdays. They are not just a given, every birthday for him is a milestone, and blessing. He asked if I would post for him, because he is so worn out lately. He stared first grade last week and has loved every minute of it! However, by the end of the school day he is wiped out. He is adjusting very well to the scholastic aspect of it, he is bringing home many 100% papers, if he does by chance miss something, it is only one question. Physically he is struggling. I have given him every opportunity to go short days or stay home, but he wants to be there, he wants to learn. What an amazing example of endurance this kid is.

So Zack wanted me to post about a few exciting things that have happened lately. Tonight he got his new Scooter. He thinks it is a super fast luxury bike, in reality it is a wheelchair. It was awesome to see him racing his friends up and down the street tonight. Zack and his friends were weaving back and forth in front of each other and it was like they were all on an equal playing field. For a minute he forgot that he was different from his friends. He is still determined to ride a bike and that is great, but I am so glad that he can be safe and go fast, and be envied by his friends.

When Zack is at school he is often helped out by a 504 paraprofessional, he has two of them, one in the morning and one in the afternoon. They are both amazing women. His morning helper was with him all through kindergarten, she is loved by all the kids in the class. During lunch Zack goes to the health room at school, (not to be called the sick room or the nurses station)after he is done eating in the lunch room. He goes there so that he can be bullus fed through his feeding tube. It is a pretty sweet deal, he gets to lay down for 20 minutes on a comfy bed and relax, I went along the first week of school to train his helper. On the second or third day of school he tells me with all the excitement that he can muster that he is able to tie his shoes. He was so thrilled and had such a sence of accomplishment and I was pretty amazed too. I had tried to teach Zack on several occasions to tie his shoes, but given the state of his little, less than flexible fingers, I didn't think it would ever happen. The kid read at 3.5 who cares if he can tie his shoes, but he proceeded to show me as he laid on his back with his long skinny leg pulled up over his feeding tube. His helper had shown him how to do it in 5 minutes of one day. She knew he could do it and he knew he wanted to, and that was just what it took. Zack now ties anything and everthing he can find.

I am so thankful to be Zack's mom. He is teaching me things on a daily basis that I have been trying to learn whole life. I won't lie, it is hard to wake up at 5:45am and do woundcare for 2 or 3 hours everyday, it down right stinks. I hate it when people say to me in front of Zack "I couldn't do it" or "I don't know how you can stand that" because quite frankly it is an honor. I wish more than anything on this planet that he would not have to endure that, but as long as he is willing to endure I will be happy to do it.

So HAPPY BIRTHDAY you amazing boy!

surgery tomorrow ...

2009-08-12T20:40:00.000-07:00

and I am nervous. Please say a prayer for me.

I'm back

2009-08-05T21:05:00.000-07:00

I bet you didn't even know I was gone, I went to Denver yesterday and flew home today. I went to see all of my secial EB doctors. My mom says they are the best doctors in the world for me, or other wise she wouldn't waste the time and money to go there. I got to talk to the Doctor who helps me go to surgery and he is going to help me not be scared when I go back there next thursday for surgery. He is so and and his words sound so cool. My mom says that is how her Granny used to talk, because they were both from England.

I was sad to leave Colorado so soon, I hardly got to play with all of my Moms cousins kids. I did get to see my famous Uncle Colbert on a news show. I a so tired but my Mom said I could write a blog about my trip, and she said I could write one about my next trip and my last trip too.

Feeling better

2009-07-25T19:42:00.000-07:00

Thanks so much for the prayers. I haven't had bad mouth sores for a couple of days. My feet are still hurting alot. But I still have had some fun this week. First of all my Mom is letting me stay up late so I can update my blog, but my sister had to go to bed early. I went bowling with my family instead of going to the hot parade on the 24th. I got to have a water fight and run through sprinklers with my sister and friends. Pray for Ethan he is not feeling good and hasn't been able to play with me for 2 weeks.

I have a favor to ask.

2009-07-18T23:00:00.000-07:00

This sweet boy is in need of a few prayers. Zack has really been struggling with large wounds on his gums for a few weeks. He also literally sneezed off the roof of his mouth 10 days ago. These types of wounds are very painful for him, we are using 3 types of pain medicine and he is finding little relief. Even with pain medicine it is hard for him to talk, drink or eat. Proper oral care is rough on Zack because his mouth is small on days when he has no wounds, but caring for his mouth with so many wounds is near impossible. The dirtier his mouth is the longer it takes for his wounds in there to heal, so it is just a rough cycle that he is in right now. He is having a surgical procedure called an esophageal dilatation August 13 and he really needs to have his mouth in good shape by then. He is such a strong boy and deals with so much on a daily basis, that often goes unnoticed by others. He works so hard at home on summer school and chores and entertaining his sister, and he works even harder to just be a regular little boy. It is hard to see him hurt so much. Before he went to bed tonight his sweet sister said a prayer for him and it just hit me that he needed more of them. So if you could offer a prayer or two in his behalf I would be very grateful. And maybe you could also include my cell phone, dryer and dishwasher:}

Summer Rocks

2009-07-07T20:27:00.000-07:00

I loved going to camp, all of the doctors and counselors rocked! I got to go to an Oakland A's game, play pool, swim, dance on stage at a concert, go to a carnival and wear cologne. One of my favorite doctors was Dr. Tom, he made me a lanyard and was so nice to me. I want to go next year.

I have been really busy this summer, I have already read over 1000 pages! Tomorrow we get to go to the library and get some more books.

I got to go to a parade and get lots of candy. My aunt Caroline was in the parade for her work and she saw me and ran back and gave me a giant handful of candy, it was my favorite part of the parade.

I think this is my best summer ever, my sister plays a lot with me if my friends can't or if it is too hot for me to go outside. Today I painted my moms fingernails and tomorrow I get to go swimming at Grandma Faye's.

HI from camp!

2009-06-25T14:58:00.000-07:00

Zack wanted to give everyone a hi from camp. I think he was trying to get rid of me. He is having the time of his life. More pictures and stories to come when he gets home on saturday.

swimming at the rec center

2009-06-10T15:37:00.000-07:00

My little sister gets to take swimming lessons at the rec center. I do not, at first I was really sad, but my mom said that it was only fair because my sister watched me play soccer and t-ball. But now I am happy to go because I always see really funny things. I like to look at the really old people, they make me laugh. On the first day I saw someone that was so old I didn't know if it was a man or a woman so I just thought it was a new species called a manwom. The next day a very old man wore a speedo that was old and see through. Now I am excited to go. And my mom doesn't think I am very nice, and she would not take pictures.

I cant sleep

2009-06-04T19:16:00.000-07:00

I am having a hard time sleeping because tomorrow is my last day of kindergarten. I am so happy about it. Kindergarten was fun but next year I get to go to first grade and go to 3 recesses a day and even eat lunch at school!!

A couple fo weeks ago I got to go on a family trip in our camper to Wyoming. It was so fun because lots of my cousins got to go too.

The force is strong in this one....

2009-03-14T21:25:00.000-07:00

I got to go to Disneyland with my family and my Grandma and some of my Aunts and Uncles and cousins. It was awesome. Pretty much my favorite thing at Disneyland was the Jedi Training Academy. I got to dress up like a Jedi and train with a Jedi Master.

Then Darth Vader and Darth Maul came out, I have to admit it was a little scary. Darth Vader is big in real life.

I got to go battle Darth Vader with a light saber, I hit left and right and I even had to duck.

After I beat Darth Vader I went to walk of like the other kids but Darth Vader said the to 2 storm troopers that the force is strong in this one and they started to come after me so I had to use my hand to force them both back. One of them almost fell backwards.

And after I forced them I was able to walk off of the stage. I really don't want to meet Darth Vader again.

Zack typed this days ago, but I have not had a chance to add the pictures until tonight. It is not fun to be the secretary for a six year old, but I think he will be happy when he wakes up and sees that I have finally done it for him. Zack asked me later that day how Darth Vader knew the force was strong in him. I told him what I always tell him, that he is a strong boy, the strongest I know. I told him that he has courage, and shows me his courage every day and that others see it too. With the upcoming adoption of our foster daughter Zack has had alot of questions about his adoption. I am so glad that we have always been able to talk openly about the miracles that brought Zack to our family. It is an honor and a priviledge to be his Mom. He has taught me so much, and I have become a better, stronger person with his help. The other day someone mentioned something along the lines that they were glad I would get to have a healthy child. I didn't know that Zack had heard it or if he did if he would put 2 and 2 together, well he did. I too am glad that I get to have a healthy child, but in my opinion I now have 2 strong, healthy children. My children are fighters, they have both over come so much and both still have uphill battles to fight, but I in NO WAY see them as anything less than incredible people. Zack knows that he is loved and accepted for all that he is, I am a little sad that some look at him and discount what he is, I don't feel like I have less of a child because Zack has eb, or that I am less of a parent. The truth is that he is strong, strong enough move past ugly comments, and ugly stares and ugly people, and strong enough to not give it a second thought.(now if I could only learn that)

My new eb friend

2009-03-11T15:54:00.000-07:00

This is my new little friend Jonah. He has eb too. His mom and dad wrote a nice note to me and I want them to know that I keep saying prayers for Jonah. Sometimes I don't like eb, but I still have lots of friends and lots of fun. I think he will be ok because he has a mom and a dad like I do.

Kite flying

2009-03-09T20:23:00.000-07:00

I love kite flying but sunday I accidentaly let go of the kite and it flew clear over houses and streets and ended up across the street from my Grandpa Troops. It got all tangled up in power lines so he had to call a man from the power company to come get it down. It was stuck in the wires for a long time and it just flew in the wind the whole time all by itself. It was pretty cool.

A sweet little story

2009-03-06T19:48:00.000-08:00

Zack shared a really sweet story with me tonite while we were doing wound care and I just wanted to write it down for him. He is excited to print out his blog and make a book so he his trying really hard to post more, he wants to post something everyday but his little fingers can only type so fast and he asks alot how to spell things (and he is really asking the wrong person) so my patience tends to run thin with the whole blog posting thing.

But back to the story, well actually before I start the story I just want to mention that Zack and I have become very thankful for the time we get to spend together while I do wound care, or check his wraps as he calls it. The other day he said "I actually don't mind getting my wraps checked, I kind of like it so we can sit by other". He is very sweet.

Ok now here is the story which is very short in comparison to what I have typed. He was leaning on me as I was helping him take off his shorts, which is what I thinked triggered the memory.

Zack: "You know the other day when I had class pictures taken?"
Me: "yes" (in a kind of worried voice because I know Zack and his kind of naughty sence of humor)
Zack: "Well my knee was hurting"
Me:"Oh hunny I am so sorry, you know you can tell Mrs. Pack to call me and I will get you medecine" (in a sad, but releaved that is was not a confesion that he was working on voice.)
Zack: "Well it was ok because Grace saw that I was hurting and she said you can lean on me so I did and I felt better."
Me: "That was very nice of her" (as I turned my head so I didn't cry)
Zack: "Ya, it was way nice of her because usually she is mean."

I'm getting a sister

2009-03-05T13:20:00.000-08:00

She has been my best foster sister in the whole. I like her hair and I like to draw on her face. I like tickling her because it makes her laugh. We get to adopt her after she has been in our home for 6 months, so any time after march 30th, when the judge has some time. some times when she jumps on me it is kind of funny.

New Jammies

2009-03-03T20:31:00.000-08:00

My Grandma Angie made me new Car's jammies and I love them. I know I am going to sleep very good tonight because they are so comfy and because I got a 90% on my AR test on a book that was a 4.2 (fourth grade book). I love it when I get A's on tests.

how I listen to my moms ipod

2009-03-02T11:38:00.000-08:00

I kind of have to do it differently so they don't hurt mt ears.

2 teeth in 3 days!!!!

2009-03-02T11:15:00.000-08:00

I can't beleive it, I lost 1 tooth on saturday and then today at school I lost another 1!!! I was wiggling it back and forth and it fell out on the carpet. I got to go to the office and get a special treasure chest. I can already see the big daddy tooth behind them. I am soooo lucky. My mom had to tie dental floss around the one I lost on saturday and when she pulled on it it popped out. And the last picture is just of my sister who felt sad that I was getting lots of pictures taken and she wasn't.

Quin

2009-01-24T17:06:00.000-08:00

Quinn is Ethan's sister, she made us these cools hats and now we are BFF's.

E-DOG

2009-01-18T14:02:00.001-08:00

This is Ethan he is my best friend. I can call him E-dog if I want and he can call me Z-Dog but my mom can only call him E-dog if she feeds him something really good like piza or bacon.

We really like to play video games.

He got to come to our New Years Eve party. We hung out and swam in the hot tub.

A feast

2008-11-20T19:25:00.000-08:00

Today I had a Thanksgiving Feast at school! It was sooo fun, and when the lady asked me if I wanted peas, turkey, mashed potatoes, roll and pie, I said yes, yes, yes, yes, and yes. But the peas were really nasty. I got to eat it the lunch room with the other kindergarten class, I can't wait until I get to eat lunch at school. My mom thinks that school lunch smells bad and it makes her gag.

How I lost my tooth

2008-10-16T20:20:00.000-07:00

My toothe was VERY wiggly, I could breath hard and it would move. It would wiggle from side to side.

My Aunt Felicia knows alot about wiggly teeth because she has a boy that is 9 who has lost lots of teeth and a girl who is 6 that has lost lots of teeth. She took one look at my tooth and said "it is ready!" But me and my mom were too scared, so she said after kindergarten she was coming over and pulling out my tooth.
First she tried with a tissue, but it didn't work, then she tried with out a tissue and it was too slippery.

Then I got really nervous and needed a break. But Felicia was determined and it really needed to come out because I was having a surgery on my throught again and I didn't want it to get knocked out and lost. I really wanted a tooth for the tooth fairy.

I got really brave again and Felicia tried again, then my mom tried, then Felicia tried again, and then all of a sudden I had to lean forward and it just came out!!!

The tooth fairy came and brought me a dollar and a shiney quarter and some of my favorite books! I was soo lucky. My Grandma Troop asked me what I got and I told her and then I told her that the tooth fairy when my dad was little was stupid and cheep and only left quarters. (nice)

A story about epidermolysis bullosa and me on BYU weekly

2008-09-19T19:51:00.000-07:00

A reporter from BYU came to our house and talked to us about eb, because some guys from BYU road their bikes to California to tell people about EB. They were really nice guys, we saw them in Provo and then the next day they came an biked by house. Here is a link to the story they did about eb.

http://www.byub. org/byuweekly/ Default.asp

You have to scroll to near the bottom of the page to where it says additional resources and clic on the week of 9/16/2008. Then click on Faces of BYU riding for eb.

This is not the first time I have been on TV. I was on channel 5 when I was 3 and on channel 13 when I was 4 and last year I was on channel 4. I like seeing myself on the TV.

One busy dude

2008-09-12T18:26:00.000-07:00

I told my mom that I am one busy dude today. She agreed. We have been running and running around and I hardly have anytime to do all the things I want to do, like play with my friends and play my Wii games. I do have lots of things that I want to talk about though. Most of the things that have been happening are happy, but one sad thing did happen, my Uncle David went to heaven. He is my Dad's big brother and he made my Dad laugh when they were around each other. I think everyone is going to miss Uncle David, but he is in heaven with my Aunt Alisa and some of my eb friends, but I know that I will see them again.

I had a birthday!! I am now 6. I feel like I am a big kid but my mom forgets and calls me her baby.
This is me in the morning of my birthday, my mom takes one of me every year. She also takes one of me in the bath every year but I am not putting that one up. I went to school and got a pencil and got to go to Article circle with my Grandma and Grandpa Troop and my Mom and Dad and Brock.

I got the Wii game that I have been asking and asking for from my Dad and Mom, Lego Indiana Jones. I even got to go bowling with a friend and a few cousins. I use a ramp and bumpers so I get really good scores. At night some of my other cousins came and sang happy birthday to me and brought some treats and I even blew out candles on a cupcake.

Well it is so late and if I don't get to bed then I won't be able to have any stories read to me, but tomarrow I want to talk about a funny thing that I do to my mom.

A big week

2008-08-28T16:32:00.000-07:00

It seems like lots of people like to ask me "what did I get in to" when they first notice my wraps. My friends and family know that I get into PLENTY, but that is not why I have wraps. (You can read about eb from the links on the side of the blog). But I think it would be fun to tell every one all that I do get into.
So many fun things have happened this week. I started Kindergarten! We only went one day though, we got the rest of the week off. Thank heavens, it was hard waking up at 6:00 am to get ready, and that was not even a bath day. I will have to wake up at 5:30 on those days.

I also started my second season of soccer. My team is the silver sharks. I even have some of the same guys from my team last year.

Grandma Angie took me to Build A Bear for my early birthday present. I got a Husky dog, I named him Husky. (creative) I also ran into my Uncle Leif, lots of people think we look a lot alike. What do you think?