I Refuse: an EB Fundraiser

There is an EB fundraiser going on now to raise money for an EB Organization called P.U.C.K.   They are raising money for EB research!  This wonderful Woman, Christie Zink, of The Little Light Images, put together a kit to raise money for this great organization!  

Here is a picture of the kit:

Kit includes: Tote bag containing t-shirt, awareness cards, water bottle, bracelet, and a car decal. This price INCLUDES SHIPPING. To begin, select the number of shirts desired. Next, click on "order now" to select your sizes. (You can always "go back" if you need to change this number.) Please make sure that the quantity you initially selected MATCHES how many sizes you select or your total cost during checkout will be incorrect. PLEASE ALLOW 4 Weeks from the event end date for processing and shipping. Thank you!

If you'd like to order one (or they have just T-shirts available too) you can do so here

My shirt is on the way:)

4 days left!!

I have had an AWESOME start to my part time gig as an Avon Rep!!!  I'd like to keep it going!!  Only 4 days left for the great deals campaign 12 has to offer!  Not too late to get great gifts for Father's Day either!  Free shipping on orders over $30 still available!!  If you are local (Orlando, FL area) order thru me via email and i'll deliver your items in person!!!

Check it out!

My On-Line Avon Store

bandage room

Finally after 14 months we finally have a room just for Joey's bath and bandage changes!  Why we waited this long you may ask...well honestly....i didn't think we'd still be doing 1 hr bandage changes with Joey by this point.  We weren't with Sami at this age and I never expected to be doing it with Joey.  But of course every kid with EB is different so we do what we have to do!  The bathroom in our room was being used as a bandage storage room but Joey got too big for the kitchen sink for baths and too big for the kitchen table for dressings.  So we reorganized the bathroom and now the dinning room is the bandage storage room and the bathroom is for baths and bandage changes.  While he sits in his soft, blow-up infant bathtub in the big bath tub I get all the bandages ready.  We use the bathroom counter to lay everything out on and a card table to change him on.  Its been a little over a week and so far so good!  He can see the TV in our room from the bathroom so that helps with distractions a bit.  Here are some pictures I took.  Hard to get a picture of everything due to the bathroom door but you'll get the idea.  

The bathtub is to the left.  The sink is on the right.  The bookshelf is used to hold things we use daily.  The rolled gauze is stored under the table in boxes (thanks to the help of Sami- she helped organized it all!)

Boy Noises

I finally have a few moments to sit down and write a post!

Not really sure what to write about today....apparently its not politically correct to air ones 'dirty laundry' so to speak and a good chunk of the not so happy stuff I write about sometimes come back to bite me in the a** so I have to choose my post carefully to avoid future drama.  We are all healthy, and employed but many of my days are very difficult.  4 kids + working part time+ my own health problem+ no help= well...its probably better if you don't know what it equals.  I know most of you wonder how I do it all, and honestly I don't know how I do it all; I just do.  Most days I don't think I can continue to do this, yet I am still here....still pushing along. 

I was going to do something crazy since I have a 'big' birthday coming up in a few months...like run a half marathon crazy ( I am NOT a runner)...but after training for a week, I realized the arthritis in my knees is worse than I thought and I probably wouldn't survive if I ran that far at once.  Its been two weeks since I started to train and I am STILL in pain almost 24/7.  So in January I will be on the sidelines (probably helping out in someway) and 30 other people will go run in the Disney Marathon to raise money and awareness for EB!  The Jackson Gabriel Silver Foundation does some pretty awesome fundraiser for EB and this is one it them! 

My Avon endeavor is going better than I expected!  I hope it continues each month:)  Please check out my on-line store to the many affordable items they have!  My goal each month is to make enough commission to pay at least one of the many medical bill we still owe on.  (payments range from $25-60)  I have meet my goal for this month:)

Only 8 more days of school...trying to thinking of activities to do this summer.  Kinda hard with the number w/ EB out number those w/o EB....

One more girl scout meeting party for each girl....same night....same time....complete opposite parts of town:/

Joey continues to change every day!  Got the crawling thing down pat!  Though its not his prefer way to get around. He walks all around the furniture and walls.  He not only can go from a standing to sitting position w/o hurting himself, he can go from a sitting to standing position too!!!

new words: Dora, cup, yum.  

And he is into making 'boy" noises.  Today whenever he made a 'boy noise' the girls would go, joey stop farting.  he's start laughing, then would start to grunt and make more 'boy noises' and then laugh some more! 

Here is a few pictures of him.  The girls don't like me to take their picture these days.

 asleep after a bath and bandage change

 eating his new favorite food: graham crackers

eating his 2nd favorite food: yogurt

Shop my AVON store!

Shop my AVON store!: Here's a sneak peak at some of the latest products available at Avon. Be sure to click

My Newest Venture!

For the past few months a friend of mine has been encouraging me to become a Avon Rep! I thought about it for some time and decided to give it a try! I am sure most of your are thinking, when do I have the time! But with so many medical bills from Joey and now Sami with her upcoming surgery (see blog post for more info) any extra money I can bring in will be a great help! Plus it will give me the opportunity to do fundraiser's for EB at different times of the year! 

I promise not to bombard you with tons of emails about my on-line Avon Store. But I will from time to time share with your great deals or new items you might find of interest! Avon isn't just about makeup anymore! They offer items for the home, for kids, clothing, awesome jewelry, plus a lot more. So if you are in need for a gift for a dad, a grad, a wedding, bridal or baby shower or looking for something unique for yourself, feel free to check out my Avon Store! 

Right now they have a 'spend $30 get free shipping deal!'

Here is the link to my on-line Avon Store: http://www.youravon.com/sdenslaw

If you have any questions please don't hesitate to ask. Also please pass on this info to any friends and family that may be interested as well!

Thanks for taking the time to check out my newest venture! 

P.S. Sami's surgery has been scheduled for June 25th.  Not sure on the time yet but hopefully first thing in the morning!  

Update on Sami's appointment

Well Sami had her appointment this morning.  One side of her rods is moving; the other side has collapsed some (not as bad as it sounds) but its not good either.  So she will need more surgery:(  We are shooting for sometime in June but it will depend on doctor schedules; OR schedule and most of all insurance approval!  Surgery will likely be out-patient; but he will lock the rods so they can no longer slide on their own which mean she will need surgery every 6 months for the next couple of yrs to lengthen them:(  She is not happy about any of it so I let her stay home from school after her appointment because she was so upset.  I will keep you all posted on when she will have surgery.