Saturday, October 30, 2010

Day 5Photobucket

          I'm curious about the bandaging.  I understand his skin is so fragile.  Are the bandages meant to act as a second skin? To prevent more sores from starting and/or protect current sores from infection?

I'll give you an example of just HOW fragile.  The other night when Tripp and I were just laying in bed together, (he thinks he's an owl, so he's up all night and sleeps all day) I was singing a song and (lightly) patting his head.  Mind you, I am tiger mom and have been caring for his skin for 18 months and I know thought I knew how to touch his skin.  Well he was patting right along with me on top of my hand as I made up a song to sing.  And when we stopped, I could see about a dime sized little raw spot where the skin just rubbed right off.   Sigh.  It doesn't even phase him, though.. and that's what kind of makes me sad, because I keep going back to that time that I walked 2 miles in my new tennis shoes, and when I got to the last stretch... I had raw blisters on the backs of my heels and everytime I took a step and they rubbed- I seriously thought I was going to die.  He's so strong- he's my hero.  

So, your question... right, sorry.  Yes, the bandages are for both- to act as a barrier to protect the skin from any type of friction AND to prevent the open sores from being open and at risk for infection.  And underneath all of the bandages is that thick layer of aquaphor so that if there is friction, the skin will be slick and protected.  And yes, a lot of people would think that if they were "left open" that they might heal better... but we could NEVER pick Tripp up by his bare skin- not even for one second.  It would destroy his skin.  And when he was little and not so active, we tried to let him "air out" but the sores would either stick to things or dry too much and then blisters would from around the dry scabs.  If I could bandage every inch of him- from head down, I would.  

Every time we bathe him and he's naked, I think about how bad I just want to be able to pick him up and throw him around in my arms.  It hurts that I can't do that.  But that really is why these EB children are called "Butterfly children"- because their skin is just like their wings- it just rubs right off... at least Tripp's is.  

Do those wounds on Tripp ever heal?
I mean if he gets a blister, is his skin even able to make it heal up theoretical?

Every child with EB is different- even if they have the "same type."  Some kids get blisters more often and they are larger, but they heal within a week or two.  Tripp's wounds take months and months to heal- IF they ever do.  He has some scars on his thighs/groin area from blisters that have healed since he was a few months old.  But honestly, most of his wounds have been the same size, the same redness, and had the same drainage for months and months.  They just DON'T heal.  There is no buttpaste we haven't tried and very few ointments and dressings we haven't tried.  I think it just has to with "him."  I also think that the depth of the blisters play a significant part in healing.  I've found that the deeper the blister, the longer it takes to heal.  If the blister is just the very top layer of skin, it may heal within a few weeks.  

We thought that his nutrition was playing a very high role in healing (we thought he wasn't healing because he was undernourished).  Which, in all honesty- I don't know if Tripp will EVER be adequately nourished as hard as I try.  I don't even know if his little insides are aborbing everything he's getting.  But since I started blending his foods, and giving him his zinc, iron, vitamins, protein supplements, etc.  His sores haven't changed at all either.  So I'm convinced that it has something to do with his type of EB and his missing protein (maybe... who knows).  

      I'd like to learn more about the complication of EB aside from the skin. I think there are other complications we don't hear about as often as blisters, cuts, sores and other skin problems. Or are there? Or even, the not so obvious complications that arise from having fragile skin.. like stomach issues??

This is a tough one.  We have NO clue what is going on inside of Tripp's body.  And that is SO very frustrating.  With everything else that he has to go through, no doctor in their right mind would want to do any more tests "just to find out."  Because 1. What do you do about it if you find something?  and 2. It will usually cause more harm to to the tests.  

But yes... he absolutely can be getting blisters inside of his body (his intestines, stomach, esophagus, lungs... etc).  Especially in the Junctional type of EB.  If you would see the inside of his mouth (horrible)- it sure makes you wonder what's going on every where else.  That is why we have to be so careful about what he eats (or in Tripp's case, what goes in his feeding tube).  Because anything rough going around in his intestines could cause a blister.  But not only that... think about peristalsis (the movement of your stomach and intestines breaking down and digesting your food)- that's friction, right?  Hopefully things are slimy enough in there to keep from causing a blister but you never know (that was gross, I know... but true).  

Ok, anyway... other complications- well... in Juctional EB, you are mostly dealing with the skin and the inside issues (trachs, feeding tubes, the EYES (ugh))... so I'm not too familiar with all of the other complications that can go along with the Dystrophic types of EB.  I know that the Dystrophic children get the usually get the webbing of the fingers and toes... which I'm sure with time causes other growth and development issues.  It's sad, but with most Junctional kids (esp Herlitz) they usually don't even get to find out if there are bone growth and developmental issues because most angels don't make it past their first or second birthday.  This is not my best category, so I'm sorry if you wanted more :(

Now, I want to share some pictures with you of some really fantastic people who are doing some really great things to bring about EB awareness this week.  Remember when I told you about the very nice lady (Mrs. Gail) at the uniform store in town (Lifecare), who made me cry because she bought my 3 pairs of scrub pants for me- just out of the kindness of her heart.  Well- since then she's sent me 6 more pairs of pants and tops.  I know, people are just so kind.  Well, she also set up a table in their store this week to bring awareness and sell DebRA bracelets in honor of Tripp.  I was touched :)  See? 

These are some really great, thoughtful people.   And, Mrs. Gail's daughter, Regina is a member of Theta Phi Alpha here at the local University (SLU) and her and her sorority sisters also sold DebRA bracelets outside of the student union all week.  And handed out information about EB, as well.  See? 

   I just cannot tell you how happy this makes me.  18 months ago, no one around here (or a lot of places for that matter) ever knew that this horrible diease even existed- and now each day, maybe just ONE more person is learning about EB, and about the struggles these children endure each and every day. 
Thank you, ladies.  I am forever grateful!! 

And also, there is a very special girl who is doing her "senior project" raising awareness about EB and raising money for Tripp (and I don't even think she knew it was going to fall on "EB Awareness Week").  Her name is Kami Lucia and she goes to Destrehan High School.  She is putting signs in people's yards that say, "You've been Tripped."  Then she also leaves them a flyer at their door, explaining who Tripp is, and what EB is.  Then the sign stays in each person's yard for a week- and every Sunday, she goes back to pick up the sign, the donation, and the flyer saying who that person wants to "Tripp" next.  And it continues... SO CUTE, right?? See? 

 I thought it was SUCH a cute idea.  And I had nothing to do with it!  What an awesome girl to take on such a special project for my little man, huh?  AND an AWESOME and FUN way to spread EB awareness!!  Thanks again, Kami:)

I am LOVING EB Awareness Week and all the people who are showing so much support to my family and all the EB families out there.  This is so important to me and is also showing me how really GREAT people can be.  And like I always say- Yes, EB is a horrible, horrible disease... but if our story can touch ONE life, or change ONE person- then there is a purpose and a reason why it exisits.    



  1. Wow that is so amazing to see. I am so glad to see there are so many loving people raising awareness for Tripp. Beautiful! :)

  2. Oh I love Kami's idea, she is so awesome !

  3. Incredible! Love the sorority girls and especially Kami~ Brilliant! God is so good to your little Tripp~ he has angels all around him and even far away!

  4. Incredible people helping an incredible boy! You are an inspiration!

  5. Courtney - I have loved all your posts this week and how you have shared of yourself and Tripp! You are an awesome momma to a sweet baby! God knew he needed a mommy like you!

    Thank You for sharing with us!
    Tina in NJ (friend of Bella's)

  6. Tripp is blessed by so many people who love him, especially his terrific Mom, Dad, and Grandmother! Thank you, Courtney, for the fantastic posts.

  7. Wow! What an impact you've made on the community! Look at how many people have had their lives effected by Tripp and your willingness to share your family's story! What a gredat week you must have had!

  8. Hi Courtney and Tripp..I would love to purchase some bracelets or make a donation..can you post some info on how I can do this? I am also looking into EB locally and see if there are many or any children where I live that have EB..see if there is anything I can do for them, or to raise awareness here in Nova Scotia..