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!!!!!
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!
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?
Thank you for taking the time to read this.
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 – Items in RED have been spoken for or are being provided!!!!
(the house is wood/cabin/country style)
Crib (larger/not bassinet)
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
television and DVD player
ipod/MP3 player and speakers
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
kids books – preferably educational
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”.
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!
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.
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.
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!
Please pray for him.
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!
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!