Asking for prayers for an EB friend

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.

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!

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

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

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

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...

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.

HI from camp!

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

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

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....

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

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

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

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

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

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

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

2 teeth in 3 days!!!!

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

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

E-DOG

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.