Monday, December 6, 2010

One Lucky Girl.

Gosh, I didn't realize that it was already December 6 and I hadn't blogged since the 1st.  I guess time flies when you're having fun too busy to know what day it is :)

There hasn't really been much new going on.  Tripp is about the same- good days and bad days.  All we can do is embrace the good ones.  Honestlly, right now, if it wasn't for his poor eyes and mouth, I think we could be okay.  Both the eyes and the mouth are the saddest things.  And for both, there is pretty much nothing we can do.  Dr. Defusco is working on getting someone to help with his mouth- and that's a pretty hard task to take on.  She's been our #1 advocate from day one.  Love her!  But the eyes- I think we are done.  Other than steroid shots every few months, there's nothing left to do.  And if you could see his eyes right now (like up close and personal)- they are bad.  And it's really really sad.  

But when I talked to Dr. Defusco last night, we discussed maybe TRYING to get him on some type of schedule.  He's killing me with his "sleep all day, up all night" routine.  She said that if I could get him up a little earlier in the morning (this would probably involve a lot of kicking and "would be" screaming) and then try my hardest to keep him up during the day (haha) that I could give him a small dose of melatonin to help him sleep at night.  Now, I know all of you have heard me talk about my son and how what he says, goes.  Well, I don't think that will ever change.  But I'm willing to at least try for him and for me- so I'm not getting sick soon from sleep deprivation.  

Also, we talked about getting him on a long-acting pain medicine instead of the morphine.  That way I could give it to him once and it could work all through the day.  Instead of giving the morphine, letting it wear off, then giving it again and trying to control his pain every 4 hours- which isn't working.  This might help him (hopefully) to be able to function better throughout the day, instead of coming up and down off of his " drug highs."  I just can't explain to you the amount of open wounds he has all over his body.  And changing his diaper, changing his trach dressings, or doing a bath is DEVASTATING.  And I will do anything, and give him whatever pain medicine he needs to make him as comfortable as possible.   

On a brighter note, from what I hear... we are supposed to have a pretty good turnout for the "Trot for Tripp."  I'm so excited that people are willing to participate and also that they are becoming aware of this disease.  Since Tripp was born, I always said that it would be great if all of the EB families could all live close and in one state.  But if that was the case, then I guess we couldn't spread the word across the counrty like we are doing now.  As far as I know, Tripp is the only Junctional EB child in Louisiana (other than sweet little baby Owen, who passed away in the NICU months ago).  And it makes sense because he is said to be 1 in 2 million.  And it just makes me smile to know that so many people in this area, this state, and even in the country are starting to learn about EB.  And it's taking one person at a time.  Through blogs, by word of mouth, through fundraisers, email, facebook... it's amazing.  And I'm so grateful for all of you who have been so supportive through all of this.  

Oh, and I just found out that my awesome friend, Dianne (the one who is doing the fundraiser for Tripp) will be on the radio again tomorrow morning, so please tune in to listen to her!  She will be on Kajun 107.1 at 8:15 am and Tangi 96.5 at 8:30.  Thank you again, Dianne- for making all of this possible!!

I want to send out some thank-yous.  And I know already that I am leaving many people out, and I'm sorry.  I truly appreciate every little thing that is done for Tripp and I. 

I want to thank all my great friends for another beautiful flower arrangement that you sent.  It came just in time to be a beautiful centerpiece for Thanksgiving dinner.  

Thanks Mrs. Lori Hess, Mrs. Brittany Navarre and to Maurepas 7th and 8th graders for the cards, stuffed animals, books, and the gift card (that the kids raised the money for themselves) that they sent to Tripp.  He loves his rudolph and I very much enjoyed reading your cards and words of encougament.  I cried a little, I'll have to admit :)  You kids are amazing and so thoughtful to have done such a wonderful thing for us.  I will keep your cards forever, so that one day Tripp can read your sweet words :)

Thanks to Theta Phi Alpha sorority at SLU in Hammond for the cards, book, and precious "Penguin pillow pet" that they sent for Tripp.  These girls have been spreading the word about Tripp since they found out about him.  They had a fudraiser to raise money for DebRA outside of the student union during EB awareness week.  And they always do kind things for us, even if it's just to send me a nice email.  Thanks again, girls.  

And to all my lovely blog readers who have asked for our address and send special things for Tripp- books, puppets, music cards, etc.  I am touched by each and every one of you and appreciate every gift, thought, prayer, or kind word.  I am one lucky girl with a beautiful baby boy and a whole lot of great people who love him.  Thank you all again.  



  1. We are lucky to have you and Tripp in our lives!! You both are AMAZING! Love you more than you will ever know, sis :)

  2. LOVE that this little man is getting so spoiled by you and ALLLLLLLLL the people he has touched around the world! I wish to anything I lived closer so I could help. I am praying and hoping and thinking of him a LOT, but wish I could be there to do something MORE. Help clean or cook or do something goofy like dance around in an Elmo suit during bath time. Thanks for the update, I check your Blog every day for word on him and you!

  3. Thanks Courtney for the update on Tripp.I keep you and your family in my thoughts and prayers.Tripp is so precious and you are a wonderful mother. I think you may be correct when you say that God chose you to be Tripp's Mom. I so admire your deep faith and trust in God. I will continue to keep all of you in my thoughts and prayers.

  4. Since you are trying to keep him up in the day... Can u take him out in the morning for walks since the weather is not so hot anymore and get him a pair a sun glasses to help him a little with the bright light? I do not know just maybe different views and fresh air will help with everything a little I was always told a walk a day in fresh air does the body and mind good. Well I hope it works you are doing a great job. He is so cute

  5. Courtney... I may have missed your email with your address! Can you resend it to ? You are a lucky girl~ just having a boy like Tripp to snuggle! Hugs~ Diana

  6. Thoughts and prayers are with you all. Hope you and Tripp have a wonderful Christmas.

    Ms. Sabrina

  7. Just sending your hugs and prayers!

    Tina in NJ (a friend of Bella's)

  8. praying for you!!! i do not blog, but i follow your blog daily. thought you might be interested to know that there is an article on aol health about eb....

  9. I don't know you, but, I feel like I do because of your open-ness and pride of being Tripp's mommy. Sounds like you BOTH are blessed....

    Wanted to pass on that I have committed to donating 10% of sales from my etsy shop to P.U.C.K. I am just starting out, so I am hoping to help figure out the mystery that is EB.

    Thanks for sharing your lives with us.
    Sara Cooper
    (friend of the Ringgolds!)

  10. Thought you might like to see that you and the others in the EB family are making a difference in the SMA family, too.

    One day both of these genetic nightmares will be history :)


  11. Courtney we are the "LUCKY" ones.... I just want to personally thank you for your blogs. I try to read them everyday, if not I go back and read whenever I can. You have been a blessing in my life. I know you will never know how many lives you have touch. Mine being one. I pray for Tripp everyday and he is so BLESSED to have you as his Mommy. You have made me aware and I have been sharing your blogs with my friends here in Mobile, Alabama. Keep the faith.


  12. Wondeful website. I can see that your son lives life to the fullest despite his challenges. I can tell from the videos that Tripp is smart for his age as far as understanding things. I love it when he shows a bit of attitude. I notice you have an iphone. There is a program called prologue2go that is a downloadable app for iphone and ipad that allows for complex communication boards to be made. I'm wondering if something like that would allow Tripp to use his words more. Signing may be difficult with the blisters on his hands.

  13. Thank you for being so open and honest, and for loving your son so dearly. You are amazing parents, and have a beautiful, beautiful son! We are sending you a lot of support and love from Lithuania, Europe. You and your son are spreading such a good energy, positive attitude and enourmous amount of courage to live and do the impossibles.

  14. Hi Courtney- I'm your newest follower! Your story is so inspirational. You are a true woman of Christ. Your faith in the Lord and willingness to share your story is truly incredible. You have the ability to touch so many lives that most people cannot. So happy to have found your blog and I promise to pray for sweet baby Tripp every night before bed! xo Michaela