Friday, October 16, 2009

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.

Thursday, October 15, 2009

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."

Wednesday, October 14, 2009

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.

Saturday, October 10, 2009

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.

Friday, October 9, 2009

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.

Thursday, October 8, 2009

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.

Wednesday, October 7, 2009

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.