Monday, April 19, 2010

Your Questions.

So I've been wanting to do a blog answering any questions that you all may have.  I know there are some people that leave questions for me in the comments, but then I don't have an email or contact info to answer you back.  So... every now and then I will try and do a post to answer any questions you might have for me about Tripp or EB or whatever... as long as they are reasonable questions, of course :)  So anyway, either leave them in the comments or shoot me an e-mail... and if I get enough of them, I will do a post and answer them.  I just don't want anyone to think I'm ignoring their questions or suggestions.  Thanks :


  1. Hi Courtney! Thanks for opening up for questions! I've been reading your blog for awhile now, and I always keep your family in my prayers.

    Could you give a brief background on like...where you grew up, how you met your hubby, how long you've been married, etc?

  2. You are so considerate! Wow, you amaze me!

  3. Hi Courtney! How sweet of you to think of others! I have a question, but I don't expect you to post it on daughter and I would like to send Tripp a birthday card, but I am not sure where to send it to. Since we can't come to a birthday party(Indiana is a long ways from Louisiana),we would love to send a card. I don't need a home address, but do you have a P.O. box? If not, don't worry, I am just so in awe of his strength and of yours and your husband's devotion to Tripp and God. You all inspire me so much and I wanted to let you know that even though I don't know you all personally, my family supports you!! If you feel comfortable enough and you have one, please send your number to me at
    I pray Tripp's other eye starts to get better...I was so bummed when I read that.

  4. I do have a question and its a little personal. Sailor is 1 week older then Tripp, and I know some of her dirty diapers are so bad I have to just take her and hose her off in the tub, how do you clean Tripp when you have dirty "Sticky" diapers without harming his skin?

  5. I have a question for you. I don't know a lot about EB, but I do know that trauma or pressure to the skin can make it slough off. So, my question is this: how MUCH pressure? If you were to hold his hand (like crossing the street) when he's older would that damage him? If you were to hug him tightly? Catching him at the bottom of the slide? Going down the slide even? How about walking? Would that hurt the bottom of his feet? Or peddles on a bike? Obviously, many of these things would be when he gets older and I'm sure as he gets older, ya'll will all learn to adapt to his ever growing movements. Just wondering about pressure in general

  6. Hi Courtney,

    I think you are so AMAZING and Tripp is so BEAUTIFUL! I keep you and him in my frequent prayers. Anyway, I was wondering if you planned to have any other children down the road, and if so, what were the odds of them also having EB? Tripp was definitely WORTH it, but I imagine caring for multiple little ones with EB would be a challenge.
    God Bless,

  7. hi courtney! i think you are so amazing and Tripp is SO cute. i've asked this before, but i thought i'd repeat it here so you could answer it if you want to. i remember a while back when you guys were thinking of taking out all of his teeth because he was just causing too much damage with them. but in recent pictures he definitely still has all of them. so i was wondering why you decided against it?

  8. Hi Courtney -
    No questions - just wanted to let you know I was thinking of you and Tripp. And that corneal abrasions stink!! Evey had her 3rd one in less a year a couple of weeks ago and they are just awful! Glad the Grandmas live near you to help out.
    Take Care - Kim & Evey

  9. Hi Courtney - so sorry that sweet Tripp's other eye is hurting now! I'd like to echo Emma's post - we would love to send Tripp a birthday card! If you have a PO Box, we'll be happy to send one along!

    No other questions at the moment! Lots of love and prayers from TX!


  10. Hi Courtney,

    I've been happily lurking in on your wonderful and amazing family. Tripp is an absolute doll!

    I was wondering how the session went with the new EB family you all met at the hospital went? You mentioned they were going to come over to your house and watch a bath and dressing change. I imagine you are the best "trainer" and that you were able to provide them with so much important information. I also imagined they might have been overwhelmed and what words of comfort and wisdom you were able to give them.

    Thanks! and take care! You rock!!!!

  11. Are you and Tripp sleeping any better or is it still pretty interrupted all night long? That's my question. It's so rough not to get a good night's sleep. Thinking about you and praying for you.

  12. oh, and I thought of another question. When Tripp got his trach, you said that one of the worst parts is that you couldn't hear him cry anymore. As much as parents complain about their babies crying, we all know those cries are sweet. So, I'm wondering if you got that little filter (? I don't really know what it's called) thing yet, so that you can hear his sounds??

  13. Hello!

    I'm a long time lurker and can't imagine a better mother for a special boy like Tripp. You amaze me! And those cheeks on that boy - precious!

    I'm curious (based on one of the things that my 18 month old loves the most about his day) is Tripp ever able to be nakkey or do you go one dressing to another? My son loves the minutes leading up to a bath and dancing around the bathroom, is this an option for Tripp (not necessarily the dancing part, the nakkey part).

  14. I've sent you an email Courtney with more info. To any parent dealing with eb or burns, I watched a dvd today about an invention 27 years ago that did help two eb sufferers that you need to see. It never made it to the medical profession, too much red tape, but there are versions of it available. I will try to see if we can load the video to utube and send you a copy. I have to get permission first. In the meantime, Look up p.e.m.f. therapy and electromagnetic therapy. It has no known side effects to my knowledge and is pain-free and for me it works. The machine that was used for the two children on the dvd you won't find yet commercially, but I know the man and can put you in touch with him. We're in Australia, but there are similar machines in America. Look up or They can tell you all you need to know about pemf. You all have my prayers. These little children could have been possibly saved all this suffering if only the research was done. F.D.A. have approved some p.e.m.f. for wound healing, so there is some research that says it does accelerate wound healing. Obviously not so much formal testing yet, because we there are no claims of medical cure. To the medical profession, please do the research. I personally say this therapy is brilliant from the perspective of someone who's life was turned to happy again instead of sheer pain.