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Monday, May 28, 2012

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!)

Sunday, May 27, 2012

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 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

Friday, May 25, 2012

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

Friday, May 18, 2012

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:
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!  

Wednesday, May 16, 2012

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. 

Monday, May 14, 2012

bits and pieces

I have been meaning to blog more but life has been very stressful these past few weeks.   Nothing major, we are still healthy and employed.  Just stupid bank screw ups, stupid state ordinances, etc...

Only 16 more days of school....oh joy....they really need year around school down here.  I love my kids but I can not give them the structure they need.  And there are no affordable summer camps that they can all attend and it wouldn't be fair if only 2 of the 3 (girls) got to do something "fun".  Plus we are having major behavior/attitude issues with the two middle ones.  Some days its ok; other days it take every ounce in my body not to leave the second Joe get's home from work.  No joke.  Some days its that bad.  Nothing we have tried is working; no punishment or reward is great enough for them to WANT to become better behaved children and friends.  Some days even their friends don't want to play with them because they are mean, bossy, whine/cry about EVERYTHING and they just don't get it.  I hope I survive summer

Sami goes back to see her back surgeon on Wednesday.  We will find out if/when she will need more surgery this summer.  I will let everyone know how it goes.  

Joey is becoming more and more active!  Great for him, bad for his skin:(  He is still walking around the couch and walls but still falls and usually his face receives the most damage from the falls!  He is crawling/scooting around more too and his knees are actually holding up well!  His forearms are another story and I had to start padding them more.  He has also stopped drinking/eating as much as he use too.  By about 1/3:(  He still has his g-tube which we use but for some reason we can't get as much to fit into his belly feeding via tube as he can eating by mouth.   We can't even get the minimum amount of fluid in him that the doctor would like hin to receive w/o making him throw up.  But he seems to be doing ok with that he is taking in and has no signs of dehydration.  I know its normal at this age but still frustrating some days.   But he is happy and healthy for the most part so i guess that is all that matter.

I have decide to slowly become  a (partial) vegetarian.  Slowly eliminating red meat from my (not the entire family) diet.  Then we'll get to pork and maybe Chicken but I am not sure I could become 100% vegetarian.  But I am going to give it a try!  

I started running tonight...I ran/walked a mile in about 15 minutes. First time in about 10 yrs!  And now I feel like i got hit by a truck!  Yes I am training for something but am going to wait and announce that at a later date.  Still working out the details and to see if my body and skin will be able to do this!

Today little Tripp Roth turns 3 years old in Heaven!  If you haven't already seen the post Courtney did, you can find it here.

That is all for now!  Off to cut up some more bandages for Joey:)

Here is a picture of him today w/ his buddy Elmo wishing his buddy Tripp a happy birthday! 


Thursday, May 10, 2012

Please Sign the Wound Care Bill Petition for EB Patients!!

You can find it here

Thank you!!!

Monday, May 7, 2012

Upcoming EB Events on Saturday

Love For Lucas 2012 Bowling Party

May 12, 2012 5:30 pm
Spevock’s Nautical Lanes

184 Miller Road, Avon Lake, OH 44012
(440) 933-7008 

Join us on May 12 for a night of bowling, food, and fun to raise money and awareness in our battle against EB. The event is being held in our hometown of Avon Lake at Spevock’s Nautical Lanes. There will be raffles and silent auctions on numerous incredible items. Tickets are $25 per person, children age 10 and under free. Your ticket includes unlimited bowling, shoe rental, pizza, and pop. To purchase tickets or learn about sponsorship opportunities, please click here If you would like more information about the event please email Brian and Nicole Hardman at Please join our fight against the “worst disease you never heard of.” Please help the butterfly children fly free. Please EB part of the cure. 

Jogging for Jonah

Helping Find a Cure for EB in Honor of Jonah Williams
Saturday, May 12, 2012
5K Walk/Run – 8:30 am
1 Mile Fun Run – 8:45 am

Tanglewood Park
Clemmons, NC


Head on out and support some great causes for EB!

Sunday, May 6, 2012

Quick update

I know, I need to start blogging more...going to make an effort to try and blog a few times a week this month.  I have a few ideas on topics, just got to find the time:)  

We are all still here and well for the most part.

Sami is counting down the days until summer vacation:)  She got her progress report on Friday, 4 A's and 1 B's!  She was happy to have brought up her grades from her last report card!  She goes back to the back doctor in two weeks; we'll know then if/when she will have surgery this summer.

Summer is too, counting down the days until school is out!  She had a rough day Friday, I got a call from her teach at 9am asking me to come get Summer; another student threw up all over Summer:(  So she came home and took a shower, clean clothes and back to school she went.  She didn't seem too traumatized; it was her BFF who threw up so apparently its not as bad when you like the person:)

Grace has developed a major attitude these days:(   Everyone will be happy when she goes to school in the fall!  She needs the structure and routine.  

Joey, is now running along the couch!  Still struggles with balancing but is getting better at walking with help.  His skin was doing REALLY well and I really thought the coconut oil was the answer.  I do believe its still helping I don't think its was the "cure all" I was hoping for.  I think no matter what new product we use, EB is still EB and we will still have good skin days and bad skin days.  He has some new words: Spongebob; bye bye; ni-ni- (good night).  He is cutting at least 2 teeth right now too:/

Work is going good for me; been at the new store for 3+ month now.  Still miss the old place and all my friends.  I still keep in touch with some of them thru email and Facebook but it isn't the same.

Well I think that will be all for tonight.  I have been up since 2:45am and I am very ready for bed!  

Some up coming things I hope to blog about-

Things I am considering:
 1-selling Avon; 
2-becoming a vegetarian (or at least a partial one); 
3-thinking of training to run a half marathon in January; 
4-a post about how much my life has changed in the past 15 yrs.  

picture of the day:)

Tuesday, May 1, 2012

Blended recipes for g-tube feeds

We give Joey a mostly blended diet of fruits and veggies thru his g-tube vs using pre-made nutritional supplements. 

Here is two recipes I came up with


2 4oz containers of Mixed Fuits and Oatmeal baby food = 140 calories
1 container of Benecalorie= 330 calories
2/3 cup apple juice = 47 calories
 1 1/3 cup Greek Yogurt- 224 calories
6 tablespoons of Happy Bellies Organic Oatmeal= 120 calories (contains 120% RDA of Iron!)
1 tablespoon heavy cream= 50 calories

all that equaled about 21 oz of food and 911 calories.  I divide that into 3 oz container so its about 130 calories per container.

I change up the fruits each time I make it.  I usually do fresh or frozen fruits- blueberries, cooked applies, banana, peaches, and a mango once.  I do applesauce sometimes and some baby food fruits.  Some fruits are just easily to use baby food, WAY less work for me! 


1 cup cooked mixed veggies= 90 calories
 1 container of Benecalorie= 330 calories
2/3 cup apple juice = 47 calories
 2/3 cup Greek Yogurt- 112 calories
3 tablespoons of Happy Bellies Organic Oatmeal= 60 calories (contains 60% RDA of Iron!)
1 tablespoon heavy cream= 50 calories


all that equals about 15 oz of food and  689 calories.  I divide that into 3 oz container so its about 138 calories per container.

I do mostly frozen veggies, mixed veggies are great!  As for fresh veggies, I usually do carrots, sweet potatoes and Avacado.  I have done pumpkin in the fall.  I do some baby food veggies from time to time.

Joey get's 4 containers per day thru his g-tube, so just from food alone he gets about 536 calories!  In addition to what little he'll eat by mouth.

He also drinks a milk mixture I make:

8 oz of Elecare Jr concentrated to 30 cal/oz comes out to 9.5 oz)= apx 280 calories
24 oz of Almond milk= 270 calories
1 packet of Carnation Instant Breakfast= 130 calories
3 tablespoons of heavy cream= 150 calories

that comes out to about 34-35 oz and is 830 calories.   Joey is lactose intolerant but the small amounts of dairy from the carnation instant breakfast and heavy cream doesn't seem to bother him.  I suspect because its divided up into what he drinks so he is only getting small amount each time. 

Right now he gets about 1366 calories per day.  His GI wants us to increase is calories 100 per month. So at 12 month we started out at 1200 calories per day and now he is almost 14 months old so we are close to 1400.  It does vary depending on which fruit/veggie I use and how much he drinks on his own.  Some days is more than others just like any other toddler!  We also give 20cc's of water after each "meal" just to help keeps his kidney's healthy.  He will drink some water by mouth but never more than a oz over a 24 hr period.  

Calories is what he needs not only to gain and grow but to heal his wounds as well.  Extra protein and iron are also important in those with EB as well.