Until further notice...

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...

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 ...

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

I'm back

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

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.

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

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.