Monday, October 24, 2011

the eb reality

This week is EB Awareness week. As you may recall, last year I wrote this letter about EB and stuffed about 100 of them in neighbors mailbox flags. This year I just thought I might write a few things that might enlighten some of you (or your friends, neighbors, people you know) to the realities of EB.

First off, if you want to send people to a comprehensive, easy to understand, accurate description of what EB is, send them HERE.

Our reality:
- a child who doesn't eat anything but a few (I really mean a few, three) bites a day. That means we can't get out very much and have to do tube feedings wherever we are, if we HAVE to be gone during meal time.
- daily two hour bath/dressing changes
- constantly fearing that Jonah will fall
- cleaning up blood, draining blisters, bandaging boo boos on the spot, even when we're at weddings, parties etc because he's a little boy, wants to run, and most always falls at some point.
- constant blistering of Jonah's face and hands, with no way to protect him AND allow his face and hands to be free. draining blisters two to three times a day.
- severe fragility of Jonah's skin, even the bandaged parts. Today I unbandaged him and he had a HUGE blister on his left knee and a huge wrap around blister on his lower left arm. new blisters every day.
- stares and questions (sometimes rude, sometimes not) every single time we go out in public
- having only two babysitters that know how to do g-tube feeds and can keep Jonah if we ever need/want to get out of the house together
- LOTS of money spent on over the counter products (formula, cloth diapers, disposable diapers (to cut elastic off of), flaxseed oil, avocado, Desitin, diaper salve, seamless socks, iron-on grippers for seamless socks, etc) that we only have to use because of the effects of EB. things you'd never think of.
- eleven medicine doses a day
- constantly figuring out a blended diet. blending TONS of mixed veggies, broccoli and cheese, avocado, and blueberries. trying, for the love of all things nutritional, to figure out how to stuff the calories he needs into seven oz servings while still allowing him to experience hunger in the hopes that he might eat by mouth.
- making and blending meals every morning
- a kid who screams in agony every time he has to poop his diaper
- hardly getting outside at all from the months of May through September
- having to run a water pump overnight because he also won't drink anything but a few sips of water every day. gags on milk, juice, or any other liquid that has a taste.
- severe acid reflux and throwing up
- thinning hair
- weekly feeding therapy
- monthly nutritional and developmental therapies
- teeth that have very little enamel and anticipating many future dental surgeries/probable false teeth. like by the time he's a teenager.
- marital stress. feeling guilty that you can be normal and do normal things when your only child cannot.
- watching your child suffer and being able to do very little about it.
- always coming at your child with a needle or suture scissors to "clip clip" one more "boo boo". a child who knows the sound of the sterile gauze packet opening and screams in fear before you've even touched him.
- causing a corneal abrasion if you accidentally poke your kid in the eye, ripping his ear lobes or taking the skin off his chin if you take off his shirt the wrong way, giving him huge wrap around arm and leg blisters if you lift him the wrong way etc.
- between three g-tube meals a day, two hour bandage changes, and nap time, there are about two hours of the day we can leave the house, given it's not too hot.
- having to avoid large crowds, knowing that your kid wants to walk and run around like everyone else, but that if he gets bumped or knocked over, it's bad news.
- wondering if the next time he gets a normal cold or virus, THIS will be the time he ends up in the hospital with his breathing issues
- having a child that refuses to wear anything but regular crocs, because he's afraid of other shoes because of the pain. no tie-ups. no boots, and now a refusal to wear his NB sneakers because when his feet were so torn up (for almost three months) they made him hurt.
- wondering if your child will have a hard time making friends, get made fun of at school, ever have a girlfriend, get married, have sex, or get to have kids of his own. wondering if he'll live long enough to even get the answers.
- wondering how in the world to explain to him that God really does love him and made him special. praying desperately that he'll not use EB as a reason to turn his back on or hate God.

Other EB Sufferers' Reality:
- battling infections every day
- becoming immune to oral and, often times, IV antibiotics
- seemingly constant hospital visits and doctors' appointments
- having esophageal dilatations two or more times a year because of strictures (scarring) in the throat
- tracheotomies (due to scarring in the trachea)
- struggling to eat
- sloughing of intestines
- struggling to breathe
- disfigurement of hands, feet etc because of deep scarring
- six hour bandage changes
- agonizing baths because of open wounds that just won't heal
- getting nutrition through a g-tube or having a liquid diet through a straw. not being able to open your mouth wide enough to bite into a hamburger or chew up a steak.
- constant stares, questions, and ridicule
- corneal abrasions
- loss of eye sight because of scar tissue
- severe malnutrition. never being able to gain weight. being undersized. having limited mobility.
- severe swelling/side effects of having to be on constant steroids
- having to use a wheelchair, because it's just too painful to walk
- never being able to play sports or even an instrument
- dying in infancy from infection and/or malnutrition
- dying in your twenties from skin cancer

I know it's easy to look at Jonah and see him thriving, and believe me, I'm thankful for that every single day. But there are so many kids out there who have it SO MUCH worse than he does. And his certainly isn't a walk in the park. We desperately need a cure.


What you can do:
- pray
- share about EB, educate others
 follow @EBResource on Twitter today and retweet their EB tidbits for the next 24 hours and earn $1 for DebRA, for every tweet, up to $2,500. include #ebfund in your tweets today because that earns money too.
- text BELLA (in remembrance of Bella) or TRIPP (in honor of Tripp) to 50555 to give $10 to PUCK (Pioneering Unique Cures for Kids) to further fund the research for the bone marrow transplants, our closest hope of a cure. see
- pray (some more)

Thanks for loving our kids!

No comments: