Thursday, June 23, 2011

I know I'm a slacker, but don't give up on me.

Life is too short to wake up with regrets.  So love the people who treat you right.  Forget about the ones who don't.  Believe that things happen for a reason.  If you get a second chance, grab it with both hands.  If it changes your life, let it.  Nobody said life would be easy, they just promised it would be worth it.

First, I want to thank all of the wonderful people who have been supporting us, contacting us, praying for us, and loving us.  It is completely humbling.  And for some reason, it seems like I have received more e-mails, facebook messages, and cards in the mail this past week than I ever have... mostly from perfect strangers just letting me know that we are in their prayers!  You guys are just amazing.  I really don't know what to say anymore.  If it weren't for all of you, I don't know how we would keep pushing on each day.  Because like I've always said- I need to keep myself happy and healthy so that I can keep Tripp happy and healthy (well, as healthy as possible!).  We are blessed beyond words to have such an amazing group of supporters- I wish I could do something in return for each and every one of you.  I just wish I had the time to sit down and write each one of you back! 

So I know it's been a while since I've posted, and I'm sorry.  The last time I wrote,  Dr. D was making a house call to come and draw Tripp's blood for labwork.  Well, all went great while she was here- we talked and visited for a while about everything that's been going on with him.  And then we laid him on the table, with my mom holding his feet, me holding his arms and head, Dr. D sticking him, and my brother's girlfriend Ashley helping her put the blood into the different tubes.  Tripp was, of course, ticked off... but did so well (AS ALWAYS)- he's nothing short of a saint.  BUT when Dr. D had got the blood back to the lab, it had clotted and they couldn't read it :(  She was so upset- and I felt so bad because she did such a great job getting it (and not to mention she made a special trip to the house to draw it).  

So that's when she decided that we needed a home health nurse.  And she called to set it up for us last week.  So we now have CareLink Home Health.  Our nurse's name is Kati and I LOVE HER! (she is another reason that I know God is watching out for us).  She's great and I know we will get along just fine!  Right now, Kati just comes once a week to "check in" and see how Tripp is doing and to see it we need anything.  She will be re-drawing all of Tripp's labwork next week.  And the best thing about having a home health nurse now- is that if Tripp ever gets an infection bad enough to where he needs IV antibiotics- she can give them to him AT HOME!  You can't get any better than that.  Especially when I'm terrified of going into the hospital because I have this nauseating feeling that if we go in, we won't come back out.  That was amazing news for me!  So I'm really excited about having Kati now:)  Hopefully Tripp will warm up to her- he just knows her now as the girl that comes in and puts a stethescope on his chest, which he just WILL NOT have.  But I'll save the talk on his little rotten behavior later:)

He's really not been feeling good.  He's about to finish a SECOND round of antibiotics (back to back) that Dr. D started again when she was here (just because he was feeling so yucky and we were out of other options).  And usually the antibiotics make him feel better, but this time they didn't.  He had a span of about 4 days at the end of last week and through the weekend where he was breathing AWFUL again.  One night last week I swear we didn't sleep 10 minutes straight all through the night.  His breathing would sound exactly like a whistle.  And he was back to pulling from his chest and struggling for air.  I immediately went back up on the steroids, started breathing treatments, and gave him oxygen as needed.  It was really bad for about 2 days, and is gradually getting a little bit better.  But he still cannot stand up to play for more than about 5-10 minutes without wheezing and needing his "air."  It's always hard to tell with him if it's his airway swelling up again from some type of blister/irritation or if it's some type of cold/allergy.  Hopefully he can shake this soon and be back to his playful self.  He hasn't played much at ALL in the past 2 weeks:(

His eyes are almost completely shut.  There is a teeny tiny strip left where you can still tell if they're actually opened or not- but it's still covered in skin (you can't see his eyeballs at all).  His mouth is still horrible- sores covering his tongue now too, because all he does is chew on it!  That has to just be the worst pain ever- I can't even imagine.  His arms look good, his torso looks good (about the same as it's been in the past 6-8 months), but his legs and butt look terrible.  I don't know if it's because he's been kicking his legs, or rubbing his legs together or what- but he's got about one strip of "skin" on the top of his shins- but his calves are raw.  His little hands are the worst they've ever been!  He never even had any blisters on his hands (other than his raw nailbeds) until a few months ago.  They just keep popping up like crazy.  We thought it was just the heat, but now that the house has been at 68-69 degrees all day and he's still getting them, I don't think that's the case.  And last, his poor little neck and head are so raw and itchy.  I recently started using a Silveadine cream (with Silver in it:) on his neck to try and keep the psedomonas under control and that seems to be working pretty well.  I also recently switched back to the Baby Ecezma Cream that I was using a while back (not sure why I stopped)- but that seems to be helping a little with the "itching" too.  Oh, and I'm using the Aveeno oatmeal bath packets that my mom picked up from Walgreens in the bath water (along with salt and Baby Ecezma Wash) and that has helped his baths a little (I think)- of couse he is still hysterical, but you can tell that he doesn't shake in pain like before.  Hoping it's not just a fluke and it really feels a tad bit better! 

And now to the personality... O man.  What a little firecracker we are creating over here.  He's hilarious and mean- and we condone it.  It's just to darn cute not to.  And frankly, if something makes him smile- we will do it 457 million times if we have to (I'm pretty sure that's how many times we listened to Elmo's Ducks today, too).  And he started doing this in the past couple of days- If you ask him "Do you like to be nice?"  He shakes his head no.  "Do you like to be sweet?"  He shakes his head no.  "Do you like to be kind??"  Again, shakes no.  Then you ask "Do you like to be MEAN?"  And he gives the biggest grin you've ever seen.  It's too cute!  And he's now replaced "Shoo-Fly" with the LSU song.  He will use anything to make music or noise.  And I am so serious when I say that he can click his tongue or bang his drumstick to the tune of EVERY song on the "Best of Elmo 2" DVD (along with any song he hears just once- no lie).  He definitely became musically gifted the second he started losing his eyesight.  It's incredible and heart-warming to watch.  He makes me so very proud.  

And for those of you who don't think he is an angel yet, get this... every time he does stand up to play, when he's finished and ready to get back in the rocking chair-  he will first pick up his toys that are on his table, one by one, and walk to his toy basket and toss them in.  He picks up his toys:(  Such a sweet sweet boy.  I love him more than life.  He actually made me cry doing this the other day!  (I guess I'm a little emotional lately too:)  And he probably just does it for the simple fact that he's trying to make it a point that he's done playing and wants me to pick him up- but I look at it as he's being a good boy and picking up his toys:)

So, I am trying to focus on all of the positives that we have going on right now- like all the great people in our lives.  It's so incredibly hard, though, to know deep down that each day Tripp is getting worse and worse.  We need awareness and we need a cure.  And that's why we need all of you.  I can't tell you how many times a day I get note or an e-mail from someone else who just "found" Tripp's story.  It's INCREDIBLE.  And I hope it continues until everyone in the world knows about EB and what it does to these poor precious innocent children.  It's ripping out little pieces of my heart day by day to watch what this is doing to my son.  And the hardest part- not letting it show.  I know in my heart that I can't fix it- so I know that being depressed and sad about it every day is not going to do anyone any good- especially Tripp (who deserves the most happiness of anyone I know).  So that's my prayer request (besides prayers for Tripp, of course:) - that I can "keep on keeping on" no matter what obstacles arise, so that I can be the strong one and continue to hold all the pieces of this crazy puzzle together.  
I love you guys.  
Thank you again for loving my little man.  

One of my favorite pictures of all time. 
This was last July... almost a year ago already!



  1. Courtney, I've never commented but I've been reading for quite a while. Please know that the awareness I've gained from reading your story has changed my perspective on life. I've changed the way I look at other people (always trying to remember that everyone has their own struggle & life isn't just about "me") as well as the information you've provided about this horrible disease.

    I hope every day for a cure & please let me know if there is anything I can do for you. Thank you so much for sharing your life with us.

    This is my favorite quote & I hope it helps you (it's how I keep going most days): "Courage does not always roar. Sometimes, it is the small voice at the end of the day saying, "I will try again tomorrow."

    Take care, Dawn

  2. We have been living with EB for fourteen years and I know how very hard it is. It hurts your heart to watch them get worse and for the things we all take for granted to be such a struggle for them. My daughter's hands are totally fused now, and I was looking at some pictures recently from about ten years ago when she still had nice straight fingers and I just lost it, cried like a baby. If you ever make it down to Baton Rouge, we would love to meet you and Tripp.

  3. Thoughts and prayers to you and your family. <3

  4. Thoughts and prayers for you, Tripp, and your family. You are one of the strongest women that I can imagine. I pray for strength to face the small issues I have with the grace that you display.

    In God's Grace.

  5. You are a strong, amazing mother!! You will have the strength to "keep on keeping on" because you love your son and you have family and friends who love you and Tripp very much! I've never commented on any of your posts before, but everyone needs to hear kind words and everyone deserves prayers. I Started following your blog when Sheri C. began posting about EB Awareness.I cannot tell you how strong you truely are! You're right, Tripp deserves everyone around him to be happy.

  6. I think that you are an amazing person. I can't find words to express how much your strength and optimism inspire me!

    And that boy of ours is the most courageous person I can imagine. He gains his strength from you and from God.

    I pray for you and Tripp.

  7. We do love your little man, but don't forget that we love you too. Your courage and strength are an inspiration, and I know that there must be dark times and hard times, and fears and anger and all that, but that's nothing short of normal, and doesn't diminish from the you we've come to know and love. You are in my thoughts and prayers, as is Tripp and all your darling family, and Tripp's devoted doctors and workers. He's is just a miracle. Thank you again and again for sharing Tripp with us. He has changed my life, as have you, and I'm eternally grateful!!!

  8. I am another stranger that came upon your blog through a friend and you leave me speechless. God did pick the best Mommy for Tripp and he definitely picked the best baby for you. Throughout his struggles it absolutely amazes me how happy he is and I believe that has a lot to do with the care and love you give him 24/7. You and Tripp are always in my prayers. What an amazing family you are!

  9. I have never posted before but I have been following Tripp for some time now! You are so incredibly blessed to have Tripp in your life! He is the most amazing little boy, I'm sure if he could talk he would never complain! He has touched so many lives and changed so many people's perspective on life it's great! Thinking and praying about you guys daily! Keep up the great work as an amazing mom...
    Ashley- Lincoln NE

  10. I think you're amazing, Courtney. I think about you and Tripp so very often. Many hugs to you both!

  11. Courtney- you are anything BUT a slacker. I just don't know where you get the strenght some days. Then I look at little Tripp and I know you've got your motivation right in front of you. I think about you all the time when I feel like I've got it rough and I just push ahead knowing there are Moms like you who are making it happen every day. If you can do it, I can do it. I think we all understand you needing a break, we will all be here supporting you in the background even if you aren't posting for us. Tripp is in my thoughts and prayers daily! Of course you are too :)

  12. Dear God,

    Please be with Courtney and Tripp. Help Courtney to feel your comforting presence. Give her the strength she needs to press forward everyday to give Tripp the love and comfort he needs. Thank you for the home nurse for Tripp so that he does not have to go to the hospital. Help Tripp to feel better soon so that he can play and smile for his mommy more. And I pray for a cure so that one day EB will be no more.
    In Jesus Name, Amen

  13. He is definitely a little angel. An amazing little man with such courage and bravery.

  14. Echo what Miss Erin said above about the slackin' bit. Your first priority is to Tripp, and by honoring that, sometimes you don't end up with extra time or energy to post. The Lord, your family, you, and Tripp are the only ones who really know just what it is like walking this journey, so there are no apologies needed, but they are appreciated nonetheless!

    Angelique, Lonni and Jay Mooreland, and I are working our little butts off doing what we can to fastrack a cure for EB through the research at U of M, and I promise with all of my heart that what they are working on now will lead to far more safer and more widely applicable treatments for EB kids in the future. We're staking our daughters' legacies on it, that's how much it means to us. We have been blessed to see our kids return to God EB free, and in turn, all that time spent bandaging and caring is now INVESTED in finding and funding this cure we so desperately need.

    We're in Minnesota at the moment participating in 2 fundraising events up here for CCRF and RMH (Children's Cancer Research Group - our parent organization - and Ronald McDonald House), and tomorrow we meet with CCRF to create PUCK's 3 year vision. You just keep taking the very best care of Tripp AND yourself, and we'll keep working our butts off up here. Together, we do our kids justice, and hopefully do God's will along the way. Bless you, Courtney. You are an inspiration for us all. Much love and respect, Tim and Angelique Ringgold

  15. Love you, girl. You are one amazing lady. And that Tripp is the most amazing kid ever. We continue to pray for you both!

    Love from TX,

  16. You and Tripp are amazing! You are both in my prayers. Like you said, just keep on keeping on. God will carry you when you can't walk.

  17. Oh Courtney: You are an amazing Mommy and no Slacker. I still can't figure out how you can still blog after all you do all day and all the stuff you have been dealing with the past year. You have strength beyond measure, I guess that is where Tripp gets it. Hang in there, you have so many people praying for that precious son of yours. Tripp has touched so many lives.
    Love you guys. Give Tripp a hug for me. Love Leah's Nana

  18. I'm quite sure no one who reads your blog will ever accuse you of being a slacker!
    Although, I think we are all anticipating Tripps next up swing and some more fun videos of his musical talent.

  19. You are amazing! You and Tripp are so lucky to have each other. Hang in there and just keep loving that little guy. Our thoughts are with you.

  20. prayers for both you and Tripp man from sunny Singapore!! He is looking simply ADORABLE in his picture! many virtual ((((HUGS)))) from where we are :)

  21. You don't know me. I just came across your site and it has literally changed my life forever. You and your family will be in our prayers. Tripp is a gorgeous little man!

  22. The beautiful boy "Carson" lead me to research EB about a year ago, that is when I began following Tripp's and Jonah's lives...learning about EB ever since! When my daughter's jr high class was studying skin in depth, I asked the teacher to include EB in the curriculum (and she did!)
    I include Tripp and you in my prayers daily.
    Blessings! Melissa

  23. I am a new reader although I have seen your button around before. All I can say is wow! You are amazing; you and that gorgeous little boy of yours. I hope Tripp has some better days ahead. You will all be in my thoughts and prayers.

  24. Courtney,
    I've said before that you're one of the toughest persons I "know"... You both are in my prayers... and I just wanted to tell you that I totally understand that you don't want to be down, sad and depressed for your good and Tripp's... but it's ok to be it some times... and we are here for when it happens....
    All my love,

  25. God Bless that sweet rotten boy of yours! He is just precious no matter what! I love his mean attitude !
    Would he be able to get a bone marrow transplant in Minnesota, to cure his EB and make his symptoms better?

  26. Your little man is just so amazing! i am so glad that he is feeling better. I hope that one day doctors can find a cure for your man so that he doesn't have to suffer. I dont think I could ever be the mom you are. God chooses people like you to show the world what being a mother means.

  27. I'm not a normal commenter, but I just wanted to let you know that I love you and baby Tripp and am praying for you both! My son is 18 months, and one day after having a "rough" day with him I happened upon your blog and I haven't reading your blog I bawled my eyes out for the petty little things I had been complaining about. Anytime I start to get frustrated with him now, I think of Tripp and how he doesn't have the opportunity to run away from his mommy at Wal-Mart or climb on everything like a little monkey and I am reminded to just be thankful. And to pray for a cure for EB because no baby, especially not sweet baby Tripp, should have to suffer that way. You're in my thoughts and prayers, and thank you for raising awareness for EB. And for being an angel of a mother to appreciate your little rotten boy every day =)

    Heather @

  28. (((HUGS))!!!! to you and Tripp.