Monday, August 2, 2010

What's going on and Tripp's Benefit

Hi friends... This week has been a good week.  I have a whole lot to be thankful for!  Tripp is still doing well- his eye still looks good (not AS great as it looked before- but good) and his trach is doing good.  He just hasn't really been feeling GREAT in just the past few days... a little worse than he's been.  I think it has to do with me going down on the steroid.  Right now,  I'm concerned about his sores- I started that new medicine (Dapsone) along with the steroid.  It's supposed to eventually take the place of the steroid and hopefully have the same effect- well... I don't think that's going to be the case.  With the steroid, I could just go up on the dose and taper back down every other month or so when his sores and his mouth started looking bad.  This would at least give him a break from all the inflammation for a few weeks.  I just don't think this is going to do the trick- but I'm being patient.  His sores are starting to drain a little more than normal, and his mouth looks horrible.  But this little HAM still has it in him to smile.

Yesterday was Randy and I's 2nd anniversary!! Whoo hoo!  We've made it through what was (SO FAR) the toughest year of our lives.  I'm not going to lie- it's been HARD... being newlyweds, finding out you are pregnant right away, then finding out your son is sick and not supposed to live a year- and then LIVING that year with your son, facing one challenge after another. We've had NO time to actually be a "couple" with a normal life- and we may never have a "normal" life.  But really, what is a "normal" life.  You have to make your own normal- and we are trying- and we haven't given up. That's what is important.

We are in the process of selling our house.  That has been another stressor.  But it's what we have to do for our family- and it's the right thing to do for all of us.  We have a wonderful, caring, generous family who is helping us out right now.  God has answered my prayers at this time:)  We are truly blessed to have such wonderful people in our lives.  Thank you thank you thank you!!

Well, I know this is VERY short notice- but it was short notice to me, too!!  Tripp's annual Benefit Softball Tournament is this coming weekend.  It will be Friday and Saturday- August 6th and 7th.  It will be held at the same place- the West Bank bridge park in Luling, LA.  We have teams already- but if you have a team (men or women) and would like to play, please contact Randy @504-496-4793 (yes this is his cell- he gave me permission... ha) And if you don't play softball and just want to help out with concessions or anything else- also contact Randy!!  OR if you just want to come hang out and support Tripp- that will be great too!

Randy is working on getting the press box ready for Tripp so that he can FINALLY make it to one of his tournaments!!  I'm crossing my fingers that nothing happens-  He was in the hospital for both of his benefits last year and then his 1st Birthday- well you know how he felt for that!  It seems like every big event- something happens!  Hopefully this year will be different.  Please say a prayer:)
Thanks again for the continued love and support even though I haven't been a faithful blogger :)  I love you all!



  1. Courtney, I would love to contribute to the benefit. Please email me at to let me know how I can do that!! I am not into paypal... but would love to send a check! God Bless and good luck with the benefit!

  2. I wish I could play, we don't live close enough to eachother but it sounds like a blast!
    Congrats on your anniversary!!

  3. Wish I could be there..I would love to contribute somehow..I do have a paypal account and would love to send a donation..

  4. Courtney,
    Thanks for the update. Maybe Tripp's new medicine will just take awhile to really start helping him. At least I'll pray for that! Glad he's still giving you smiles!!!!!!!!!!!!!!!!!
    If ya'll sell your house will you, Randy, and Tripp move to Ponchatoula so you can be closer to your family? I know at one time you said your dream would be to move back there.
    Take care-

  5. Hi Courtney: Thanks for the update on precious Tripp. Sure hope he can adjust to the new medicine and start feeling better.
    Congrats on your anniversary! I bet it has been a tough year for you guys, but look at you two, you made it.
    I will be keeping my fingers and toes crossed that Tripp can make it to his benefit and show off that great smile and show everyone his muscles. Love you guys. Take care!! Love Leah's Nana

  6. What is normal, INDEED! This is the NEW normal, like you said, LIVING with what life gives you and finding the blessings inside, no matter how much digging you have to do! Cheers to you and Randy for doing such an AMAZING job handling everything thrown your way with grace and a bit of humor. Proud to be in your lives.

  7. Praying for sweet Tripp - his little face just makes me happy every time I see it! Happy anniversary to you and Randy, too!! You're both amazing parents - may God continue to give you wisdom, strength and encouragement in the days ahead.

    Love from TX!

  8. Courtney,

    Although I can not attend from St. Louis, I would like to contribute to the benefit for that adorable Tripp. Do you have pay-pal set up? Or I will send it to the same address as I sent Tripp's Shopping Cart Cover (I will need to look up that address).

    Please know that if you EVER have an auction planned in the future, I will also donate a shopping cart cover to that as well, all you have to do is ask.

    Congrats to you and Randy on 2 years!!!


  9. Hello, I am an aunt to a 3 year old boy with RDEB (we're in Cincinnati). Would love to contribute to your benefit. If possible, email some info to me at Thanks! jamie

  10. Hi Tripps story has really touched me i dont know how i came across your blog but its truly touched me and made me realize how precious life is. I watched his videos and Tripp is in my prayers he seems so full of life and happy. Mom you are doing a great job!