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Monday, October 31, 2011

EB Awareness Week- Day 7

My life with EB-

The one question I get asked A LOT is how do I do it???  Honestly I have no idea!  lol  I just do it.  Caring for 4 kids, cooking, cleaning, working part time, grocery shopping, ordering supplies, doctor appointments, changing bandages, laundry (OMG the never ending pile of laundry) it all has to get done so I just do it!

My typical week day:

get up when Grace and/or Joey wakes me up (btw 7 and 9); draw up Joey's meds, get Grace something to eat and drink, mix up Joey's breakfast.  Give Joey his meds and tube feed.  They watch Mickey Mouse while I take my meds, get something to eat or drink and quickly skim through my email and Facebook updates.  

Next I do the dishes, then give Joey his pain meds while I get things ready for his bath and bandage change which takes about 20 minutes.

Then I give him his bath and spend the next 45- 60 minutes, removing the old bandages, popping blisters, removing scabs, applying new bandages, and wrapping him all back up.  Sometimes he lays there and is a happy camper; other times he screams at the top of his lungs the entire time.  Once we are done, he is usually ready for a nap.  While he sleeps I clean up the mess we just made, start a load of laundry, make Grace lunch and if I am lucky and he sleeps longer than 30 minutes I might get a shower and some lunch myself.    If Joey isn't up by 2 I have to wake him in order to get Sami and Summer from school on time.  I won't even tell you about Monday's, you can read about it here.

But T, W and Th, we come home, they have a snack, I feed Joey his lunch, break up MANY fights btw the girls, help them with their homework, start dinner and then on W and Th I go to work after dinner.  Once I get home from work I try to catch up on email, my blog and figure out what needs to be done the next day!

As for the weekends, I got to work before anyone else gets up so Joe does most of the things on the weekends that need to get done. 

and as for MY EB, I don't get many wounds- not ones visible to people I see every day- most are internal or places always covered by clothing, but when I do have wounds, I tend to them when I need to.

That concludes my EB Awareness Week posts! 

Coming soon:

Halloween 2011!
Grace's Birthday (how can she be 4 ALREADY???)

but for now, Will you BE THE ONE???

Sunday, October 30, 2011

EB Awareness Week- Day 6

 I didn't get time yesterday to blog and I really wasn't sure what to write about today and I got some bad news this afternoon, EB has claimed another life:(

Baby CJ, age 4 months, Junctional EB


I really don't have anything to say now.........maybe tomorrow.....

Thursday, October 27, 2011

EB Awareness Week- Day 4

Links, Links and more Links!

I encourage you to check out any of these links to learn more about EB or to read the stories of others with EB!

Or any of the other links on the left side of this page!

EB Awareness Week- Day 3

Wordless Wednesday....even those with EB can achieve great things:)

Tuesday, October 25, 2011

EB Awareness Week- Day 2

Its late and I am doing 7 other things at once, so here are some quick facts about EB you may or may not know:

*In the US, 1 out of 50, 000 babies are born with EB.  Worldwide that number drops to 1 out of 17,000.

*Approximately 1/3 of those babies will not live to see their first birthday.  

*Depending on which study you read, 1 out of every 227-352 people are carries of an EB gene (I am pretty sure this includes people who have EB)

*Simplex is the most common form of EB

And that concludes your fun (or not so fun) facts about EB!

Here is a pictures of Joey feeding (yes at 7 months) himself mashed potatoes:) 

Monday, October 24, 2011

EB Awareness Week- Day 1

Tomorrow is the official start of EB Awarenss Week!  My goal is to post something every day about EB.

Today I will show you first hand the kind of damage EB causes the skin to entail.  I don't normally post pictures of wounds publicly for all to see, but i will make an exception for this week.  Due to a very busy schedule on Monday's we skipped a full bath and dressing change for Joey on Sunday so that I could get him done first thing this morning.  So he went about 36 hrs instead of the normal 24-26 hrs inbetween dressing changes and this is what I found this morning underneath the bandages:

The blister wrapped all the way around his entire wrist.  He had matching ones on the back of both legs and his left upper leg.

this is his lower back:(  the dark red areas are completely raw.  

 Bottom of his foot.  His big toe is a complete blister.

Due to my work schedule and the girls school schedule its hard to change him at the same time every day.  So we need to figure something out that works for everyone....

That is all i have time for today.  Come back tomorrow for more EB related info!  I am also working on something I hope to have done by Friday!!!

Sunday, October 23, 2011

EB Awareness Week

stay tuned for some posts during
EB Awareness Week!

Sunday, October 9, 2011

Busy, Busy, Busy!!

Life here is very busy these days!  Besides school, both Sami and Summer are in girl scouts this year and Sami joined the 4th and 5th grade Chorus and of course EVERYTHING meets on MONDAYS!  So Monday's Summer is a car rider, we then go to the park near school for about 30 minutes and then back to school to get Sami.  3 Monday's a month Sami has a girl scout meeting; Summer just two Monday's a month but of course its the same Mondays for both girls.  But they both don't have meetings the 2nd Monday of the month so tomorrow will be a little less crazy:)

They are doing ok in school.  Sami had LOTS (1.5-2 hr) of homework per day during the week and she is struggling with spelling this year:(  Some of her words I can't even spell as an adult let alone when I was in the 4th grade!  Summer has been struggling with writing.  She CAN write she just doesn't think she can which results in a TOTAL emotional tearful breakdown EVERYDAY during writing time.  A few days she got so upset she was yelling at her teacher:(  Her teacher was out most of last week so hopefully things will go better for Summer this month.  

Home school with Grace didn't go well.  She would SPEED through her worksheets and then was 'done' even if I wasn't.  Plus Joey's schedule is so unpredictable we couldn't have school the same time each day which made her upset.  It is fine though she already knows her numbers, letters, colors and shapes....I teach her too much more and she'll be board in pre-k next year!  She still will do 'homework' sometimes with Summer after school.

Joey is 7 months now (you can find that post here)  Unfortunately he has developed Torticollis:(  which means his head tilts to one side and he is unable to straighten it.  That is what Sami had that lead to her spinal problems:( Usually its due to a muscle issues so we are starting on the PT exercises we learned with Sami and I got him a chair that he can sit in on his own without falling over and that will help with the neck muscles. If we don't see improvement in a few weeks then its off to the orthopedic doctor for x-rays and evaluation.  His is occurring later in life than Sami's did so hopefully we caught it in time (and can correct it) before damage to his spine has had time to occur.  I am also trying to figure out a way to get in on his stomach w/o causing pain and him throwing up.  Any pressure to his belly/g-tube area causes him to throw up.  So tummy time is tricky.  

Oh and the biggest news, Summer lost her first tooth last Thursday at school!!! She was more excited that it happened at school than in the fact she lost her first tooth!

Friday, October 7, 2011

Dressing Changes- part two

For those who missed part one, you can find it here

Part two: I wanted to focus on somethings we have changed recent in regards to Joey's bath and bandages that others may find helpful, so i wanted to share.

Bath time has almost always been a crying/screaming time for Joey.  In the beginning we alternated bleach/vinegar/plain water baths.  Mostly to keep the infections at bay.  Once we noticed little to no infected areas we cut back on the bleach and vinegar baths.  But even with plain water he still screamed.  So we started using something that I use to use as a kid when I took baths, baking soda.  I use 1/4 cup in his baby bath tub (it holds about 1 gallon of water) and guess what?  he no longer screams the entire time!!  Most days he just sits there fairly calm.  If he kicks too much and hit his foot he will start crying but for the most part he is clam.  We have been doing the baking soda baths for almost 2 months now and it seems to be working.  It seems to help loosen the dead skin and make his skin softer too.

Joey has/had A LOT of dry/dead skin/scabs all over his body.  And they are VERY hard to remove from a wiggly baby.  We can't let him soak in the tub for more than 5 minutes because with the our form of EB, the longer the skin is wet the more is breaks down.  When it gets too moist the skin just SLIDES off his body (seriously).  We run into this problem if we apply too much ointment to his bandages too.  So getting the dead skin off is a challenge.  Then I remembered something another EB family told me they did with their daughter (for a different reason) but I thought it might work for our situation.   I cut a piece of tubifast for each arm and SOAK it in Aquaphor until its all nice and greasy.  Then I put one on each arm, lightly wrap with gauze and then another piece of tubifast on top to hold it in place.  I left it on for 24 hours and when I removed it the next day about 50% of the dead skin/scabs came off with easy as I removed the tubifast!!!  IT WAS AMAZING!!!!  I tried it again for another couple of days and was able to get about 95% of the dead/skin scabs off  his arms. 

I have since tired it on both legs and was able to remove about 50% of the dead skin/scabs from there too but his legs are still really fragile that its not something I can do all the time.  He needs all the padding from the bandages to protect his legs.    But overall I consider that experiment a success:)