Saturday, July 24, 2010


Hi guys.  Tripp has been doing great- almost so well that I don't want to post about it and mess anything up!  He has been a TOTAL ham these past few days.  His eye looks awesome and his trach is tolerable.  His poor raw butt- not so much.  (Thanks to everyone who commented with ideas- I've tried them all... but every time he pees, it soaks everything!)

Tripp is just dying to start moving around.  He is a lot more active these days- which of course causes more blisters.  A lot of the time, he only wants to be standing- which consists of someone holding his hands while his cute little legs are just shaking.  Walking is no where in his near future- BUT at least he LIKES to stand.  That's a step in the right direction. 

We took him back to the dermotologist on Tuesday and she said that his bloodwork showed that he does have the enzyme that he needs to be able to start this new drug (Dapsone).  If he didn't have the enzyme, then he would be at risk for anemia.  After he starts this new med, he will have to have bloodtests done every 4 weeks- ugh.  (It is NOT easy to get blood from an EB baby).  This medicine is an anti-inflammatory drug and it's purpose is to one day take the place of the steroid long term, because the steroids can cause so many problems if on them long term.  I have to say, part of my is scared to start something new while he's doing so well (hence why he hasn't started it yet).  But I'm thinking I will start him on Monday.  It's worth a try, I guess. 

I've had a lot on my plate (not Tripp related) lately and haven't really had the energy or the sanity (if that makes sense) to post.  I've just been enjoying my little angel, I guess.  Something that for a while was hard to do becuase he just never felt well enough.  I will try to post some pictures soon- I haven't had my camera, so I've had to take phone pics:)
Thanks again for all the love and support!  And thank you for the prayers for our family. 

Could you please say some extra special prayers for Daylon and Bella.  They are both on dialysis now.  But Daylon and his family need much love and support at this time- he had a seizure last night and was going in for emergency brain surgery through the night.  He had a bleed in his skull (outside of his brain) but the pressure could still cause him to seizure again.  My heart just breaks for these kids and their families. 



  1. Courtney, I'm so glad to hear everything has been going good for Tripp & pray that things continue that way. Thank God for healing his eyes. Tripp is so precious & I continue to pray for him as well as you & the family. I have been praying for Daylon & Bella as well as their families that God heals them & a cure be found for "EB". Love ya'll.

  2. Hi Courtney: Thanks for the update. I was wondering how your little man has been doing. So happy that he has been feeling so much better and that the eye is healing. You are truly blessed to have Tripp in your life. You are doing a fantastic job of being Tripp's Mommy. I know how hard it is, but you do it everyday.
    Already have been praying for Bella and Daylon. I check on these EB sweeties every morning to see how they are doing. Thank God for these pioneer families. Praying that they can kick some EB butt. Take care guys. Love Leah's Nana

  3. Thanks for the shout out for prayers. We are in some dark woods up here in MN. My heart fills with joy to hear that you are enjoying your little man so much right now! We take those windows when we can, right? Sorry to hear the butt is still a problem. It's always something... it just rotates. Glad you are appreciating the good despite the bad. That is the key to the game of life. Don't sweat not posting. You take care of your self! We are all still here with you and for you either way! Much love, the Ringgolds

  4. I recently came across your site a few weeks ago. I have been following ever since and I just have to tell you that I have absolutely fallen in love with your little guy !! He is sooo adorable. The videos of him are the sweetest ever. You seem like an amazing mother and I look forward to reading more about Tripp in the future and will continue to pray for him.

  5. I keep all of you in my prayers daily!

  6. I saw your blog button on Mommy2Four's blog and I just wanted to let you know that I will be praying for Tripp and for you.

    Big Fat Mama

  7. I am Erin's sister-in-law. She was kind enough to share your blog with me a few weeks ago. I can only imagine how tough this journey has been for Tripp, you, and your husband, but I truly admire the way you have all been handling everything. He's such a sweet looking little boy. I love the picture of Tripp on the left. We're praying for him.


  8. Hi Courtney... Just blog jumping and came across yours! Tripp is adoarable and what great videos you have posted of him! What a lovey! I will pray for your little man and you! You are an adorable little Mommy, God has chosen you!! God Bless from Westlake Ohio!