Wednesday, October 20, 2010

Update and EB Awareness Week.

Good Morning.  So we never went to the doctor on Monday because Dr. Defusco couldn't get in touch with the nurse that draws Tripp's blood (we are kind of partial to one nurse, because he has to have it drawn in his head) and I didn't want to make a trip there just for the pediatric surgeon and then have to go BACK for the bloodwork. You follow? :) 

So as of now, Tripp has taken Cipro too many times and it's now resistant to his pseudomonas.  Great.  So the other options are daily antibiotic injections (torture), IV antibiotics (consists of being admitted), or some form of topical (we voted this one).  So Dr. Defusco is supposed to be calling in a prescription for some type of topical antibiotic opthalmic ointment that supposedly is going to treat his pseudomonas (in his scrotum area).  So we will try that today and then go for blood work either tomorrow or Friday (I hope).  

Tripp's days have been pretty rough.  Lately, he's been playing a little bit more... especially if it's right after bath and he feels better.  But lately his baths have been HORRIBLE.  Not only does he KNOW when it's coming and has anxiety- but you can tell it just plain HURTS.  He's in SO much pain for his baths.  I've used saline baths, epsom salt baths, and now having to add a capful of bleach to his baths to kill all the bacteria he's getting in his open wounds.  Pseudomonas is a bacteria that's common in water, soil, and skin... but it usually doesn't affect us healthy ones... it affects people with a low immune system and open sores.  It's dangerous because it can get into your blood stream and you can become septic.  We've been good about cleaning everything with those really potent hospital wipes that supposedly kill all those bugs.  But it's almost impossible to be 100% sterile.  Anyway, I'm tired of my baby feeling bad... I want to PLAY and be back to "our normal."  

I received the coolest shirt in the mail...  On October 30, there will be an EB race in Ashville, NC @ 9am.  It's called Heather Keyes Rodgers EB Fun Run.  It will bring EB awareness and the proceeds will benefit DebRA.  These 3 nice ladies (Melanie, Kendra, and Lacey) made shirts for the race, and were kind enough to send me one.  See? 

Look at those kiddos? Cute huh? All four of our children were born within a few months of each other.  I thought that was really sweet.  And nothing makes me happier than spreading EB awareness.  

Speaking of EB awareness, National EB Awareness Week is next week- October 25th-31st.  SO, I want to TRY and do a post every day.  But only if I get your help.  I need a topic that you want to learn more about- either about Tripp, or EB in general.  And I will try my best to discuss a topic a day with you, to try and raise as much awareness about this horrible disease as possible.  SO, what do you want to know more about?  Give me some ideas and I'll try my hardest.  No promises, though... you know how my days can change quick:)  Hope you all have a great day!  
"So then, do not worry about tomorrow, for tomorrow will worry about itself.  Today has enough trouble of it's own." -Matthew 6:34  

My little HOT mess.  



  1. Courtney,
    Thanks for the post. It's so good to see Tripp's eyes open!! Praying for him to feel better soon.

  2. Bleach won't kill pseudomonas...only vinegar will. I know of another little one with JEB who became resist to all antibiotics that treat pseudomonas and only vinegar baths helped:(

    the formula for a vinegar bath is:
    1oz of vinegar per 19 oz of water.

    don't ever mix vinegar and bleach together but you can soak him in the vinegar bath and then drain and rinse the tub (and him) and then soak him in a bleach bath the same day if you want.

  3. I just have to say that Tripp is just so adorable and precious!! He is such a little fighter and such an inspiration for so many people as are you and your family!! I prayer everyday for Tripp and hope he gets better soon!!!


  4. For your EB awareness week, I would like to know if they know what causes EB, since I know nothing about it. Thanks Courtney for keeping everyone updated and we continue to pray for Tripp and all of you!

  5. Hey Courtney! Tripp's got one of the cutest smiles I've ever seen snd can't wait until he's showing off for us...and by "us" I mean you and the camcorder! :) Daylon has pseudomonas all the time too! The only areas he has open still are his feet and guess what? Pseudomonas! What is it with that infection? It does like to die, that's for one thing! Dr. McGarthy (the EB doctor from London) told me to pour vinegar on the sore from a water bottle and let it soak. It helps, but like I said, it's still there. You could try that I guess. As far as a topic...that's a toughie. Something we would love to see changed, is people making less offensive comments "Think before you Speak" tyoe of deal. You could do one on the difficulty of finding products for EB kids (ie: clothes, shoes) and or about how they can't do normal baby things like exersaucers and carseats without adjustments. Maybe you could even list a few manufactuers who help EB families with discounts or good, soft products. I have a few places if you need help with a list. Just some ideas. Not sure what you're looking for exactly...hope it helped! Thanks for your email by the way! It made my day! Love ya! Jenn

  6. Hi Courtney, Thanks for the update! I am praying hard for little Tripp!

    I think that to raise awareness for EB you should post a detailed step by step bath/dressing change with photos post! I know that would be soooo hard and time consuming for you but I think it would really get people to get out their checkbooks! :)

    When I first heard about EB it was from reading a photo essay of a Day in the Life of an EB patient. It really pulled at my heartstrings to see what they go through and I donated that day!

    Just my suggestion. I hope everything goes well so that you have time and I am PRAYING hard for a cure! What a terrible horrible disease :(

  7. Dear Courtney, for the EB week posts I would like to know more about BMT, how it works and what it's supposed to do and if I can get tested somewhere to see if I am a suitable donor. I would also like to know, if you know that, if they are looking into the cord blood treatments

  8. Hi Courtney! I rarely comment, but found you WAY long ago through Jonah's website. Pray for Tripp (and his mom and dad!) daily!

    I love your thoughts of posting an EB related post each day for the week! I would love to know more about the different types of EB and how they affect the person differently. I hear (see? read? haha) the terms JEB and RDEB alot and have tried to research it some just to know, but I get lost in the medical terminology. SO - I thought you might be able to put into *plain english* for us!

    Also, another idea for you (that would be WAY easy for you!) is to do a post similar to what Bella's Dad did a few weeks back asking all the readers to come out of the woodwork and please leave a comment about how you found Bella's site, where you were from, etc. I rarely comment on blogs, but when the writer flat out says, PLEASE TALK TO ME...well, it was kinda hard to turn him down!

    Ok -- well, there's two ideas for you!!

    ~Dana in Mississippi

  9. Hi Courtney,

    I don't read many blogs but found Patrice's blog through FB and a friend and now read her's, your's and Daylon's. I had never heard of EB before the blogs and am so grateful to you young mothers for educating us and sharing your courageous of you guys! You must be pooped from the care these cuties require and yet you find the time to share and inform. Since next week in EB awareness week, I want to donate money to a charity that will help find a cure for EB. Any suggestions as to where I should mail a check....DeBra, PUCK? Thanks again for opening up your life to us. Love to you and Tripp and family.

  10. Just a suggestion for a post for your EB week...Could you please post what your daily life or week is like (as far as dressing changes, trying to find clothes for children with EB, etc.?) I think it would really make others open their eyes! Thank you!

  11. Courtney, as we southern women know, it is "tacky" to talk about money (hahah), but I'm wondering how much Tripp's bandages, creams, etc., and just the things you use daily for maintenance cost you out of pocket.

  12. Hi! i love following your blog, what a wonderful family you have!
    For your EB awareness week i would love to read a detailed outline of your day, what exactly is evolved in normal day to day care of a child with EB.

  13. hi!! I was wondering how much help you have to have for dressing change and how EB has affected your family(from your hubby to friends)? i hope this cream will help....

  14. I've always wondered if you will ever or have ever considered BMT. I am sure it has always been in the back of your mind but wondering if you have a specific "condition" if you will on what would make you decide that "now" is the time (i.e. # of hospital visits, # of infections, etc). Also, has your insurance company been beneficial to you or is it a constant nightmare trying to get things covered? I cannot even imagine the monthly costs you have for bandages, ointments, etc.

  15. Hi Courtney: I found your blog through Bella's blog. I am a friend of Angelique's (and live across the street from her Mom) I have become aware of EB since Bella's birth. It is such a dreadful disease and it is unbearable seeing these beautiful babies suffering.

    I am so sorry Tripp is suffering so...It is good to see his eye a little better. I just want you to know I pray for you, Randy and Tripp daily. As Tim said last week in his blog...when you are blindsided by something in life..he goes with the 3 "F"'s..Family, Friends and Faith. Faith will carry you through the darkest times.
    With Love
    Huntington Beach, CA

  16. My daughter has RDEB and is extremely sensitive to pseudomonas. I felt like she had it all the time for the first couple years of her life. Something that has really helped is pool salt. We use 2 cups in her bath water. It helps the water not sting as much, and for some reason it seems to have cut down on the pseudomonas. Email me if you have any questions katiegalex[at]yahoo[dot]com.


  17. Is Tripp starting to grow a little bit of hair? How cute. Maybe one topic for next week would be a recap of Tripp's life. Your pregnancy, Tripp's birth, finding out that he had EB, and all the milestones and major treatments up until now.
    I am sorry he is feeling lousy right now. I hope and pray things get better soon.
    Brenda in Seattle

  18. Tripp is one of the most beautiful babies around. I follow the EB blogs of all the kids on the shirt. I cant even remember how i heard of Jonah (he was my first EB baby blog) I pray for all of you and admire your fortitude. You are all wonderful Parents. and is it OK if I love Tripp from afar? (promise I am not some wild stalker or anything-- just a empty nester that loves your little baby). One thing I would like to know more about is the genetics of EB. I am a nurse so all this stuff is of interest to me
    brenda in TN

  19. Dear Courtney,
    I hope the ointment will help the "little knight." I loved seeing his big brown eyes again. What an amazing little boy inspite of everything he has to face on a daily basis! Most of the questions have already been addressed. I would have asked if you have to deal with stress from the insurance co. about Tripp's care or do they cover most of his expenses?
    Thanks for blogging on a more regular basis lately. You, Randy and Tripp are loved and admired by so many people.
    Take care-

  20. Always praying for you and your little man. Before I had kids, I was a research scientist that helped grow skin for burn patients, yet I had never heard of EB.

    As far as a topic to blog about, 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?

    When I read about Tripp's pain, all I can think of is how when my boys were in wet cloth diapers, they often had diaper rashes and sometimes sores. What helped them heal better than any creams was just airing out for as long as I could manage. Would that help Tripp? Would it cause his skin more damage to be uncovered for a period of time? I'm sure it's much more complicated than I can imagine.

    I hope you are able to blog about some of our questions to help educate us all.

    I wish I could somehow carry a piece of Tripp's pain for him.


  21. Hi Courtney,

    You don’t have to get into specifics, but could you do a post on how having a child with a chronic illness affects your marriage and home life, and how you cope, so to speak? I can only imagine the incredible stress and strain it would cause, especially if one parent is the primary caretaker. So many couples find themselves in similar situations, maybe not from EB, but from cancers, severe developmental delays, autism...anything that requires more of you mentally, emotionally, financially, and physically than most of us parents have to deal with.


  22. Hi! I was wondering what would happen if you don't bandage tripp. And 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? Thank you for educating us all about eb.
    Praying for you over here in Germany.

  23. Courtney, I think you have already given so much information about EB! You do a wonderful job, and I don't know how you find the time, sharing with us! I wonder if Randy would post some thoughts on being the Daddy of this precious baby boy of yours. And... I would love to hear from Meme, your mom, too! Love to your little HOT mess~ I love him!

  24. Hi Courtney!

    i have been thinking about this recently and I would love you to explain why various "common" treatments won't work. I have been thinking of the wounds around Tripp's privates and why they won't heal. Why is something like a skin graft or something like that not possible for the areas that refuse to heal.

    Thanks and I am thinking of you guys as always!

  25. I hope this new medication starts making your little man feel better! I'm so sorry he's been so sick, even for him. He's adorable when he's showing off his muscles and laughing =). I'd like to learn more about the complication of EB aside from the skin. Raffi's father has mentioned some things in his blog about her feet turning in ward, I think? If you don't know since she isn't your child, I totally understand, but I also 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 or ?? Thanks for sharing with us and I hope that precious little man feels better soon!

  26. Courtney,
    I want you to know that I pray for Tripp, I'm not good about commenting but follow your blog to know how to pray specifically for him.

    I am amazed you can even find the time or energy to blog but am so glad you do.

    Loving your family and praying for you and your little man here in Waterford, MI

  27. Courtney-
    You are such an amazing woman and Mother to allow the rest of the world to view your life. Thank you for teaching us all about EB. As an RN I had never even heard of this horrible disease until I stumbled upon your site. Reading your posts is always educational and tearful. I pray for a recovery be found soon. Tripp is beautiful and so lucky to have you for a Mother.
    Stay strong!
    Trish- CA

  28. Hi my name is Leslie and I want to say how cute ur baby is I live in Morgan city lousiana and my baby girl who is 6 months now and my son who just passed away has eb and so do I and my twin sister and my dad and I read ur story and it touched my heart if u wanna talk find me on face book look up lesliebabe10 it would be really nice to hear from u And I wanna let u know that u are a strong women

  29. How's Tripp? I check your blog every day for an update. I think he's a doll! Love the videos you posted of him...that personality really comes through. :)