Wednesday, September 29, 2010


I am totally overwhelmed by the people who love my son.  And I am so amazed by the people who take time out of their own day to comment, send e-mails, or send cards.  I really try hard to respond to everyone-  and sometimes it takes me a little while (I usually find a time once a week or so to sit down and write everyone back) so if I haven't sent you a thank-you, please be patient with me, but more importantly- please know that every word and every gift has touched my heart in a way that I could never express to any of you.  And if you've done something like that for us- you know who you are... and I THANK YOU.  Everyone wonders how I can ever be positive and how I can see the good from this horrible situation, well that is exactly why.  I can see the lives that Tripp has touched and I see the GOOD come out of SO many kind, generous people.  What a blessing this blog has been in my life- there are people across the world whom I've never "met" but who LOVE my son.  
"No man hath seen God at any time.  If we love one another, God dwelleth in us, and his love is perfected in us" 
1 John 4:12 

I really wish I could say that Tripp is doing so much better.  But he's just not.  He's definitely been smiling a little more and playing a little more.  But he is still just not the same baby he was 3 weeks ago.  Every now and then he will have a few good moments and I think he might be shaking off whatever this is- and then he's back to throwing himself back and lifting those legs and acting like he's in pain.  I know a lot of it has to do with his eye because it's horrible right now (oh, I cancelled Tuesday's eye appointment because he woke up and it looked a lot better, and I knew it would be a wasted trip because they weren't going to believe me) but I just know something else is going on... I just don't know what.  His appointments are rescheduled for tomorrow because of course, Tuesday evening his eye looked bad again.  So tomorrow he has a dentist appointment at 12, and eye appointment at 3:00, and somewhere in between or before the day is over, we have to squeeze in blood work at the pediatric clinic and then shots at his pediatrician's office.  Phew.  It's going to be a long day... and a tough day for little man.  He has to get his flu shot and then all of his 16 month shots that he's been behind on.  And he still has a bruise the size of a quarter from the Rocephin shot 3 weeks ago.  Oh- and tomorrow is bath day. Grrrrrr... He will be getting his Tylenol with Codeine every 6 hours on the dot tomorrow.  It seems like the only time he's able to function and be happy lately is when he's on the codeine.  And I know that's not good, and it's certainly not what I want- but like Dr. Defusco said, "If it's making him feel that much better, then he's obviously in a lot of pain and he needs it."  I've only been giving it to him once a day... but about 30 minutes after he gets it, he's like a new baby.  That last about an hour, then he's in la-la land.  

So I'm just not sure what's going on with him lately.  And we've done almost all the tests we can- OH yeah- C-Diff was NEGATIVE.  Go figure.  I'm clueless as to what's going on.  And just saying, "Well I hope he gets better soon"- just isn't cutting it anymore.  

I talked to Daylon's mom, Jennifer, about 2 nights ago for about 45 minutes.  Boy, is she a sweetheart... and what amazing parents she and her husband, Brian must be to be going through EB and the transplant  with 4 other children.  She answered a lot of questions and gave me a lot of information about the Bone Marrow Transplant.  It's not something that will be happening tomorrow- don't worry :)  Just something that's been running through my mind lately.  I want to research and be a lot more knowledgeable about it than I am now- just in case it's something we decide to take on.  Honestly, I don't even know if Tripp would be healthy enough to take it on right now.  These little ones have to be pretty strong before the transplant because it takes a really hard hit at them.  But I can't help and think if it would be the right path for us... honestly, it's been consuming my almost every thought.  

Well, the king is asleep so I guess I should be too.  Once again, I thank each and every one of you- my faithful blog readers... you truly, truly are what keeps me "keepin' on."  And I'm forever grateful for that.  

The smile I kept getting while rocking this morning. 
Melts my heart.



  1. I hope sweet Tripp plays just a few minutes longer and feels a better-even just a bitty bit- tomorrow...although I know it's going to be a marathon day. Make sure you are eating and taking care of you too!!

  2. Never commented before but I read your blog every day and have for probably close to a year. Your family is in my thoughts often and I continually think how blessed Tripp is to have such a positive mom taking care of him. I know some days are harder than others....I hope tomorrow goes as well as it possibly can for you guys. God Bless you guys!! ~Melissa in Colorado

  3. We are still praying those big prayers for you guys here in Missouri. Although we have never met, we love you guys and we pray for you everyday. I am glad you were able to talk to Daylon's mom and get some insight on BMT. God will lead you in the right direction Courtney.

  4. He's so precious. I really hope that BMT is something that will be an option for Tripp and make him feel better ! I like his diaper and how he's matching his shirt. What brand is that? Moesha has the same green one I got off ebay and it's Babyland brand. She's exactly 1 month and 4 days younger than your sweetheart !

  5. I am one of those who has simply fallen in love with your little man ! I anxiously await news daily to find out if he is better. I pray for him nightly and just think he is the sweetest little boy I have ever laid eyes on. He is the same age as my daughter(he was actually born on her due date but she came May 1 instead). He is such a blessing. And you are a fabulous mother! I have friends and family praying for him as well because I just can't help but share the adorable photos and videos of him with others so that he can touch their lives like he has mine. Thank you for sharing him with us. He truley is amazing. God bless you.

  6. Praying for your sweet little man! Courtney, I am also praying for you, for wisdom. You have tough decisions day in and day out. I'm praying you can keep up your strength and health as you care for Tripp. He is a darling, my heart breaks for him that he is in such pain.

    Praying in Mi,
    Kim M

  7. Oh that smile is the sweetest thing! Good luck today~ I hope answers come your way! Praying for your little man today, for one swift day thru some pain and home again, home again, where there is nothing but love!

  8. You have an adorable little guy. I have been a lurker on your blog ever since Patrice first mentioned him in hers. I am coming out of lurkerdom to ask if Tripp shows any sign of stomach pain after receiving the codeine? I ask because codeine gives me severe stomach cramps.

  9. Hi Courtney: I am so sorry that Tripp is feeling so bad. Do these EB kids ever catch a break?
    I sure hope today goes well with all you guys have to do. I am exhausted just reading what you have lined up. Praying that maybe you can find the answer to why Tripp is still feeling so bad.
    Love you guys so much. Give Tripp a big hug and kiss for me. Love and Peace. Love Leah's Nana

  10. prayers continue from Alabama for precious Tripp and all of you. I have enjoyed the videos and pictures that show how adorable Tripp is and hope he will be much better soon. You are so sweet to post updates for us , especially with all that you have to do each day. May God give you peace and strength as you care for sweet Tripp.

  11. Courtney,
    In an earlier blog post, you mentioned that you thought Tripp might have a UTI. My EB child is a girl so I can't adequately address this issue, but I have previously heard EB moms discuss times when their sons have webbing or EB-related issues with their boy parts. Could this potentially be the cause of Tripp's pain? I know some EB patients undergo urinary dilitations (like an esophageal dilitation, but in the urethra) to return to normal urine flow. Could be totally off-base, but thought I'd mention since all other causes seem to be getting ruled out. Perhaps one of the EB networking sites has resources to help decipher whether his symptoms match up with that??

    Love to you and your beautiful family,
    Adrienne Provost
    Palatine, IL

  12. I love Tripp a whole lot. I've been viewing your blog daily just to see the latest with Tripp. Keep going strong, Courtney. I was looking through your youtube vids of Tripp. I especially love it when he rolls his eyes and makes the horsie sound by clicking his tongue. I love it when your mom stopped pushing him in car and he paused for a lil while and signed 'more'. God hears ALL our prayers. And God will be good to us. I pray for you and Tripp everyday, even though we do not know each other. But I guess I'm no stranger to you now, since you've seen my name a couple of times. Keep the faith Courtney!! We are all here for you!!

    (This is Joni all the way from Singapore!!)

  13. I have followed your blog from the beginning as I live in SCP. Just know that there are many more people praying and keeping Tripp lifted up than make comments! From Tripp's blog, I learned about Daylon, from there Bella, and Jonah, and angel Leah! My prayers are with all of these sweet babies and their families. Even though, I do not know any of ya'll personally, ya'll are some of the strongest people ever.

  14. I have been following Tripp and your family since last fall - I love you all so much.
    Tripp - you, Bella, Daylon and Elle are the most amazing children I have come across (I am a retired RN and spent time in NICU). You Tripp, especially, have touched me deeply. I pray for you guys constantly and am awed by the world's similar response!
    Mom & Dad - Our first child was born after 13 mo of marriage. He had a horrendous defect and spent time in a very primative NICU in 1974! He survived and thrived, which was a true miracle at that time. I understand the impact on your marriage - we made it through rough times and the rewards of hanging in there have been beyond words. Adversity can build great things! I don't pretend to know the impact on your marriage of a chronic situation such as Tripp's but, goodness can abound.
    I pray for all of you at Mass daily.
    Amarillo. Texas

  15. I found your blog and have been reading old posts to catch up a bit. Tripp is an absolute angel and you are such a wonderful mother (for lack of a better expressive term..wonderful just doesn't cut it). Could Tripp have blisters in his intestines? Maybe he already does and this isn't something new, but I was just throwing that out there as I'm brand new to you guys and definitely brand new to all things EB.
    I'll be saying a prayer for his eye, his pain, his present, his future, for you and your husband, and for the doctors who take care of him!

  16. I don't think I have ever left a comment but I read your blog daily, I might have to stop reading it at work as lately it makes me teary eyed! I keep Tripp and you and your family in my prayers and think about your little guy often. Tripp is so blessed to have such amazing parents. I pray that they find out what is going on with him and what is causing the pain, I wish I could wave a magic wand and make him all better! Just remember we are here for you and your family and are lifting you up in prayer. God won't give more than you can handle..God is good and is watching over you! Keep your head up and don't forget to take care of yourself also!

  17. Wow his smile is amazing. Still praying in Maryland for Tripp. He is such a little fighter and deserves much admiration! He is beautiful and is lucky to have you (and vice versa). Keep up the good work! Stephanie

  18. I've been a lurker of your blog for some time now. I learned about your little boy through Patrice's blog. I just wanted to let you know that I truly admire your strength and positive attitude. Tripp is lucky to have you as his mommy. I hate EB and I wish there was no such thing. I hope and pray that they find a cure and that Tripp can take advantage of that cure. I also hope Tripp starts to feel better soon and that his eye improves soon. He and your family are in my prayers.

  19. Dear Courtney, Randy and Tripp-
    I came across your blog today and can't seem to stop reading your posts. What an amazing family you are. Courtney- you are a perfect example of the word Mother. Tripp is so lucky to have you both as parents. Thank you for sharing your story so others can learn. Sending prayers and positive thoughts your way.
    Trish- San Diego, CA

  20. I have never posted a comment, but have been keeping your sweet boy in my prayers each and every day.

  21. He is such a beautiful little angel baby. I pray that something is figured out soon. God bless.

  22. It's been a bit since I could go online and catch up on anyones blog. Anyway, the pictures of Tripp melt my heart. I see so much of the old Daylon in him. It makes me what to run south and go hug Tripp. Just to catch you up, I'm mailing the medical journal article tomorrow, so hopefully you'll get that this weekend or Monday. Call if you need anything! We're always thinking of you guys! Love, Jennifer

  23. Love you Tripp, and love your awesome mommy too.

  24. I have never commented before, but I always read your blog. I pray every night for your beautiful little boy and all the other children suffering from EB. You are an amazing mother and have an amazingly strong, beautiful little boy. Continued prayers for all of you.

    Mary Ann


    Wondering if you have seen this...