Thank you all! Results from the Yard Sale……..


Hey Everyone! Thank you so so so very much for you contributions towards the YARD SALE! You helped to make it a success! We we able to raise $1,188 in donations for baby William and his family!!!!!! It was a long day but a lot of fun! The kids had so much fun selling lemonade, cookies, and popcorn! We received lots of small donations and got rid of almost all of our JUNK!!!!! Even better!!!!!

A very special thanks to Lori Bingham, Alisa, Chris, Matt & Tracy Ritter, Stacy Hochman, Stephanie Berlin & Amy McClain for helping to work the yard sale, carry heavy loads and keep things in order! Thank you Brandy, KyLee, Ella, Arden and Hadley for working the stand and being the traffic directors!
 
A big thanks to those of you who donated items. We could not have done this without you!
Alisa Vinson
Cindy Lunberg
Andrew & Brenda Steers
Dave & Megan Ness
Jon & Amy McClain
Nathan Russel & Phoebe Prouhet
Michelle Bush & Scott Fornilias
Vickey & Scott Newman
Karen Keldi
Jessica Anderson
Lise & Ric Bellmar
Cammie & Buck Latta
Linda Reed & Lori Bingham
Matt & Tracy Ritter
Stacy Hochman
Pete McClain
Marlene & Stan Perry
Julie & Tom Gleichmann
John & Jill
 
Another big thanks for your cash donations to Pete McClain, Nathan Russel &  Mark Hintz! They are greatly appreciated!!!!
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Yard sale for HopeforWilliam Update: July 24th!


Hey guys, just giving everyone an update on the Yard Sale! I have moved it to next weekend. It will be on the 24th from about 10:00 to 5:00 or so. I have had a really great response so I think it will be really good.

Thank you very much to, Alisa & Matt, Matt & Tracy, Linda & Lori, Andrew & Brenda, Jessica, Jon & Amy, Dave & Megan for your donations so far. I am very appreciative and so is my sister Anim.

Brandy, Arden & KyLee are going to have a lemonade and snack stand. They are so excited to help and be a part of it. Thanks Tracy!!!!!!!  If anyone wants to stop by, our house is open and I will have some pizza’s there to thank you all for your kind efforts!

Thank you again so much. For any of you who still have stuff to donate, please let me know if you need help getting it here. I can make another run this coming week to do pick ups!

All proceeds go to www.HopeforWilliam.com click here if you want to learn more! 
Thanks again!

Hey guys this is Really Really important to me. I want to ask you to please just take three minutes to read this.


 I hate hate hate asking people for favors and I am not a fan of chain e-mails (which this is not) and I don’t appreciate solicitors. I had what I thought, was a really good idea and I want to see if anyone else agrees. Most all of you know, through my facebook postings, what I have been going through with my sister, or I should actually say what my sister is going through. That is, with Baby William. When the news first came out about three months ago, I/she received a lot of support from people whose hearts were touched by the tragic situation that she is in. Thanks again so much to all of you who helped out at the time.

As with most things, it hard to keep the support going once the news is not brand new, or the first time someone has heard about it. I was sitting there trying to figure out new ideas for ways to help, without asking people for actual donations. Anim had given me a list, about a month ago, of so many of the household items that they need for the long term. That is because they have had to move to be closer to the hospital. The story of William, born just three months ago, is here on my personal blog that I created just for him (for those of you who don’t know) Click on the Hope for William button to the right. Most of you already know the story so I’m trying not to be repetitive. The list was long and so far I have had very little success in getting these items. A lot of these items are things which many people that I have spoken to, have told me that they would love to donate. The problem, and the reason I have had very little success in getting these, is because they are too costly to ship.

So my idea: YARD SALE!!!!!! One of the items on the list was a rocking chair. Cammie Latta had a rocking chair to donate but when I researched the shipping price is was nearly $400. Not Going to Happen. I know we all have junk laying around in our houses and basements that we just plain old Don’t Want, or that we would like to donate to a good cause. The problem we have, or I have, (maybe I should speak for myself) is that it’s not enough to have a full blown yard sale. Guess what people buy at yard sales? JUNK! Guess who wants your junk? ME!!! Why? Back to my “great idea”. On Saturday July 17th, I am going to do a yard sale at 6664 Serena Ave Castle Pines (tentatively). If the HOA will not allow it I will find an alternative place. Alisa? Maybe your house? I have about 20 items and will get more, but no one is going to stop unless I can get a bunch of eye catchers. You know, like mass amounts of junk that catch the eyes of those weekend yard sale shoppers! I will do all the work of the yard sale but for anyone who is interested in helping out, all I would need is for you to drop off your stuff to me the day before. I will take one hundred percent of the proceeds and apply it towards the purchase of the items on Anim’s list. She can pick those items up directly in San Antonio. Depending on how many responses I get to this, it will determine whether or not I will be able to do this. Does anyone have anything that you would like to contribute?

Benefiting Baby William and making my heart glad!!

Thank you for taking the time to read this.

Update: May 19 2010.


Pictures from William’s first doctors visit outside of the NICU.

William is doing good! The first night home was a little rough but he is settling in nicely. “Getting sleep has been a challenge” says Anim. Her biggest concern right now, is William’s eye. His eyes are much like his skin, very sensitive. If he was to injure his top layer in any way, it can cause it to blister. Complications from this can ultimately cause blindness. One of his eyes is glazed over so she is asking for your continued prayers.

The other biggest challenge is his hands. He has learned how to chew on them thru the bandages which is making healing a challenge. For his development he does need to be able to do these types of things including propping himself up on his belly. It’s all about learning a good balance in what to allow him to do and not to do.

He is growing very fast. He is very long so he actually wears cloths that are for babies much older than he is. I got to hear his voice on the phone. He was doing all kids of cute little noises and cooing!

Needs List for William & his Family


Needs  –   Items in RED have been spoken for or are being provided!!!!

 
1. A car. -Right now they do not have a vehicle to get to and from the hospital or get around. This is more of a long term need. They are borrowing a friends car right now, but it keeps breaking down. Again, this is just a list and this is a big one so they don’t expect anything but just wanted to put the word out incase anyone knows of an incredible deal or something like that.
2. Baby eye drops – Special type needed daily that is not provided by insurance. Celluvisc and Lacri-Lube. One of the companies that carry them is called refresh. Availble at local drug store (over the counter).
 
3. Baby shirts. -What she needs is the Baby T’s that are usually used as undershirts. Very soft, like 100% cotton. They have to open in the front and be loose. Long and/or short sleeves with a soft tie in the front. Not velcro or hard buttons that can scratch him. The longer ones are really good because they can tuck them down into the diaper to keep the diaper tags from scratching him.  She said they could easily use 50 of them because he goes through them so fast. Any other really loose fitting clothes that are 100% cotton would be nice to have. He can not get hot so summer stuff is the best.
 
4. Soaps that he uses in his baths with saline bath water: Cetaphil. -This is a liquid soap. Dove bar soap too-The non scented mild kind. Dove Soaps
 
5. Baby toys -Any type that are for looking at, such as the type of mats with the hanging toys. Or things like flash cards, baby books, math dots and picture flash cards. Anything with music, he loves music and it really seem to sooth him. Right now they use a computer by is his bed to play songs. An ipod with an ihome or something that plays continuous songs that can be downloaded would be amazing or any kind of classical background music. Playmats and crib light up toys. Some Baby toys.
 
6. Bedding is a big need. For all of them, but also for William. Someone is giving them a crib but they will need lots of changes of sheets. They have to be really really soft (maybe a high thread count). One thing they have found that works really good are pillow cases. That is because they leave his diaper open so that they can see the instant he pees. That causes his sheets to get wet and have to be changed very often, nearly five or more times a day. Pillow cases that are long seem just the right size and are so easy to replace underneath him.  
Extra Shreet.
 
7. Puddle Pads are a great thing to have and right now they don’t have any of them.
 
8. They are going to need to get a really good Juicer & Blender. A good one would be really nice because they will be using it every day, or a couple times a day, to make soft foods for him.
 
9. His physical therapy is not covered by insurance so they are teaching her to do these exercises with him herself. These are to keep him stretching so that his scar tissue does not cause his movement to be restricted. One of the items that she will need for this, is one of those Exercises Balls. That kind that you see used in work-out videos, like pilates. (about knee high I guess). They other physical therapy items that he will need, she is not sure of just yet. I think those will come further down the road.
 
10. They are moving into a vacant house so any House Hold Items of course would be a huge help. Things like a toaster or the basics that people need when they first move into a new home. Furniture such as beds, couches, computer desk, decorative items etc. My Dad & his wife Maria and my 3 younger brothers and sister are moving from Mexico to come live with them so my Dad can help take care of William. So that is why they don’t already have these types of things.
11. TV and DVD player.
 
12. One thing that they have at the hospital that he loves and she would love to have at home, is a thing called a Glider -I guess it’s a bassinet that moves around. I found one online at target. I had never heard of it before. Fisher-Price 4 Way Cradle Swing N Glider  –
 
13. Lap top for Anim but also for showing videos or Music for William.
 
14: More Need sent from Anim:
NEEDS LIST:
(the house is wood/cabin/country style)
Washer
Dryer
Crib (larger/not bassinet)
Kitchen utensils
Blender
Juicer
Dishes (Sets of 10) – cups/plates/bowls
Silverware (sets of 10)
Pot sets (stainless steel)
Pans (cast iron)
Bunk-bed – and 2 single mattresses
Shelves – for 3 bedrooms, and 2 for living room
2 bedroom desks
Living room set
Rug – for living room
1 single bed – and mattress
1 double bed
1 queen bed/double bed – mattress for queen bed
laptop
television and DVD player
Entertainment center
ipod/MP3 player and speakers
Camera
laundry soap – hypoallergenic, w/out any dyes or fragrances added
changing table – without rail around it, and preferably with shelves
or drawers, for the dressing changes
…….
Hooked on Phonics program
Flashcards – picture facts/colors/ shapes/ etc
Math Dots
puzzles
kids books – preferably educational
 
UPDATED ADDRESS TO SEND STUFF: 35 Gunthrie Road Boerne, TX 78006
 
 
I hope this helps. I will let you decide which parts of it you want to use, and keep in mind that anything is a help big or small. Please let me know however else I can help.
 
Thanks again very much!
Thank you to Lauie Sterner so much for getting this swing, Beding  & all the baby stuff for William! She is going to be thrilled!

Update: May 10th. 2010 -William went home!!!


William went home last Monday. I was not able to chat with them because they were a little busy, as you can imagine. He did very well in the transition. He got to wear clothes for the first time two days before, to test it out. He looks so cute! They are renting a small little house just outside of San Antonio. Right now they have a nurse that will visit the house once a day for a few hours to help with his care. All of the bandage changes will be at home and he will see a doctor once a week, I believe. That will be minimized as time goes on and the real “Doctor” becomes Anim. At some point the parent actually begins to know more about this disease and how it effects their child better than anyone. I can see how that could happen. He is growing so much as you can see in the pictures. He is well over 10 pounds! Over all he is very healthy and strong internally. Last I heard, his feet and hands were still healing. He has a lot more small blisters all over but no major infections, which is the most important thing.

Right now I am working to help raise funds to help with their long-term needs in order to support William. More reciently, I am working to to try to find specific items that they have sent me that are needed for the short term. A BIG THANK YOU goes out to Cammie Latta and her husband Buck. They have been working with their Church, Wellshire Presbyterian, to try to get some of these needs and items sent down to them.

If anyone is interested in receiving a copy of this list of items, I would be happy to forward it on. The biggest need right now, is a car. Or some sort of gas efficient transportation. Smaller needs are things such as baby T-shirts (100% cotton with no buttons or velcro that opens in the front). Prayers of course are very appreciated by them and all of your sweet thoughts and notes are as well! Here are a few new pictures of William, he say’s to send his love, “says Anim”.

 

Update on William! April 28th 2010


So I talked to my sister today. It looks like they will be discharging him on Monday! If all goes as planned with no complications. They have made an exception to the rule, “No morphine sent home”. He is a rule breaker!!!! He has so much energy. His infection on his belly has healed up so he is not on the antibiotics for now. His feet have a lot more tissue on them and are continuing to heal slowly. He will receive house calls from a nurse daily at home for now to help with the daily bandage changes. He still has blisters in his mouth and some new ones that are quite large on his back. She said he is so alert and even pushed himself up on his arms to hold himself up, that was when they tried to lay him on his belly. He is a strong little boy! My sister is staying strong and again is extremely thankful for all of your support! She will stay in San Antonio for now because she likes his primary doctor.  Your donations as of right now, will go to help her put a deposit on the small house that she will be renting. My Dad John, is moving the family up to live with them and help them out. It’s a full-time job for two people so Thank you DAD! You are the best!

Here are the latest pictures!

Epidermolysis Bullosa


EB is the saddest disease I know of. It is a genetic disorder that affects about 1 in 50,000 babies worldwide. It’s an extremely painful disorder that causes blistering and deterioration of the skin with the slightest touch. Children are forced to wear bandages most of their life to cover their entire body and suffer from extremely painful bandage changes and infections. My darling nephew William, born on March 16, 2010 was diagnosed with this condition (Epidermolysis Bullosa) and is currently in the NICU at University hospital of San Antonio. I created this page to create awareness and support for my sister and baby William, as well as all others who are suffering from this disease.

You can read my daily updates by clicking on the Epidermolysis Bullosa/Hope for William category.  To read Williams story from the beginning, start at my first post at the bottom of this blog. I have also added some videos of Baby William. If you have any stories or experiences please feel free to share. Thank you for visiting.

Update on William: April 12, 2010


I spoke to Anim this morning. She was on her way back to the hospital. They were going to do bandage changes. They were weening him off of the morphine but had to up the dosage back up yesterday because he had been feeling a little bad. He has a slight infection on his nipple from one of the blisters so they have started him on antibiotics. The good news is that he is eating really well. Some days his mouth looks really good, other days it bleeds while he eats, in spite of it, he still eats incredibly well. He is actually growing quite a bit. He is now nearly one month old. Most EB babys have a very big problem getting nutrition which causes them to have issues later in life from malnutrition. Thankfully that does not seem to be the case with William, at least not right now. He actually heals incredibly fast. One day he will have a horrible looking blister or infection and the next day it will be practically gone. The doctor actually said it’s unbelievable how fast he heals and he has never seen or heard of anything like it. He is such a strong little baby and has a lot of fight in him. His left leg is still the biggest issue but his other foot and hands are doing a lot better slowly but surely.

Latest Updated on my baby nephew born with EB.


Update: Received the diagnosis from test results: William suffers from Dystrophic EB. The good news is that it is debatably not the worst type, where it is considered terminal within the first year. However it is quite severe and the effects can be quite debilitating. Most often patients will live to the age of about 30 years old. He is still in the NICU but they are weening him off of the morphine. His hands and feet are healing a little every day. He maybe heading home in two weeks! At least that is what they are predicting right now.

 Here is a link to the description of his type of EB: http://www.debra.org.uk/types-of-eb.html

If you would like to donate to help out William and his parents please click on the Donate button to the right. Thank you very much!

Updates on William March 27th – 31st.


Update: March 31st: Back home. Missing Willy and Anim. He’s feeling a lettle better this morning. Again, Anim wanted me to thank everyone that has contacted her and sent words of kindness and/or donations to help them out. We will all continue to keep William in our thoughts and prayers!

Sweet boy

Update: March 30th: I head back today. Sad to leave William but he will stay with me in my thoughts and prayers. I left him with a mobile to look at that should cheer him up. I have posted some videos I took of him while I was there. You can go to youtube and type in “EB Patient” and the Hope for William viedos are posted there. Or you can click on the link here. http://www.youtube.com/watch?v=wLWYHZkSP_M&feature=related  I am encouraged to know that research is underway for possible cures for this desease as seen on this youtube video I watched this morning. http://www.youtube.com/watch?v=XOd5sewWARE 

Update: March 29 4:00: Today I went along to see the dressing changes. His left ear is not doing good and has started to fuse together. The good news is that his feet looked a lot better. They are actually beginning to heal. Dr. Gong told us that she believes that he will be able to walk someday. That made Anim smile. She also told us about a new company that makes special clothes for these kids. They are made of silicone. It’s very helpful because they do not stick to the skin. William is still on morphine but they want to slowly start weening him off. His mouth looked a lot better today too. There was just one blister under his tongue that I could see.  

Update: March 28th 11:00am: So sweet. We, myself, Anim, Nicole (sister) and John (grandpa)spent most of the day with Willy in the NICU. He looked so much better then yesterday. His chin is healing nicely. He does have a lot of new blisters mostly on his face and belly, but they are smaller. His mouth has healed substantially from yesterday and he was able to eat without his mouth bleeding. It was so cute, he just loves to be held! His favorite thing is when grandpa or his mommy sing to him. Thankfully it’s not me singing, ha!  He is still on Morphine every six hours, but they have switched his bandages changes to every other day. The most important thing right now, is that his hands and feet begin to heal better, his toes are down to bone and it is still very painful for him when these bandages changes take place. Test results have still not come back from New York, so much is still in the air. Anim and Ezra wanted to sincerely thank you all again. They said they are so appreciative of all of your sweet words to them and they thank you so much for the support. It makes me so happy when I see what great friends we have and how many people things like this effect positively. I told my sister I will never complain again! Yep, there I said it!!!!!! Ok yeiks! Ok I had better run, I will keep you all updated!

Update: March 27th 2:00pm: Went to see Willy. Today was a sad day. He doesn’t look too good. What is amazing to me is how well Anim is handling the situation. Her motherly instincts have kicked into high gear. There was no better place in the world this baby could have been born. He is extremely loved and well taken care of. All of the hospital staff are amazing. She has said, “I know there is a reason for all of this and I know there is a purpose, something good will happen out of it, I just know it”. Wow a whole new perspective. He is such a special case that he is getting a lot of attention. I actually got him smiling in the picture below. We love you William!