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!
Grace's Birthday (how can she be 4 ALREADY???)
but for now, Will you BE THE ONE???