Tuesday, July 13, 2010

Update and Videos

Good Morning...  I am up at the usual 8:30, while my precious son sleeps on.  Maybe he'll wake up at 9:30, maybe 10:30, or sometimes even 11:00.  Mind you- he doesn't go to sleep until almost midnight and gets "broken" sleep every single night.  So, I'm sure he's just catching up.  But I am so thankful for this "morning time" to myself.... I can drink my coffee, get his medicines and feeding ready, catch up on my "EB baby blog reading," and sometimes (brace yourself) I even get to blog myself!!  (on a good morning).

Tripp has been doing well.  Not awesome... but not bad.  His eye is still very swollen and looks really bad in the mornings.  By evening time, he can open it a little better.  I do think it feels better, though.  He has been SO miserable in the mornings when he gets up.  I don't think it's his eye as much as it is all of his other sores.  It's like he is stiff as a board in the morning- like he is in extreme pain.  Everything just has to hurt, you know?  It takes him pretty much all afternoon to "wake up" and want to play.  Most of the morning just consists of rocking him in the rocking chair and snuggling close- NOT complaining.  

But we have GOT to get this child walking-  his poor butt/legs are so red and raw... and the other day--- O MY WORD.  We were undressing him for bath/dressing change and a piece of gauze was stuck to a sore (well, this happens every now and then, but nothing I can't get off with some aquaphor and a little cry) but THIS was horrific.  This piece of gauze was about a 1/4 inch deep into his wound.  I was sick.  The water didn't get it out, nor the aquaphor, nor the other 100 things we tried.  So I finally had to just load a piece of gauze with a TON of aquaphor and pinch it off.  It was heart wrenching.  I DESPISE when this happens.  But, the little ANGEL he is, was fine after that.  I have brainstormed and brainstormed about how to cover his butt/thighs better, but just can't think of anything better than what I'm doing.  He just gets pee all over his inner-thigh dressings.  I change the mepilex/stockinette each diaper change in that area-  but he's just miserable- it must burn his little sores so bad when he pee-pees.
EB mommies and daddies- any suggestions, I'd appreciate :) Thanks. 

Anyway, no extra special news to report... BUT no really bad news either.  So that is good:) Thanks for the prayers. 
(And yes, I started this blog at 8:30, and finishing now... 12:40.  Tripp requires my full attention!!)

Who's a Rotten Boy??

Dancing to Elmo

"Mom, who do I look at??"

Tripp and Mommy

Muscles on the 4-wheeler.... the cutest. 
His 10 seconds of outside for the week!!



  1. First to comment?!?! YES!!!
    I'll have to brainstorm the pee/dressing issue and see if I can find anything .....
    Love you!!
    P.S. - I'll get Tripps gifts out to him in the next day or so!!

  2. Courtney he is just so adorable and such a sweet baby. Glad to read the surgery went well and he feels a bit better

  3. You are very good mommy and I understand how hard it is for u.My son also has EB so I know how it is.Tripp is so sweet and so brave.Hopefully someday there will be a cure for this terrible disease.

  4. Thank you for sharing those videos.....I LOVE THEM! they just make me want to hold Tripp and give him a big hug and kisses.

  5. he's such handsome, good natured little guy!! thanks for sharing him with the world!

    as for the gauze stuck in the wounds....i have severe eczema, and at times, i wrap my extremities with gauze (not that this compares to EB), but when its really stuck, sometimes i either squirt baby oil onto the gauze to wet it and then wait and hope or just bathe with the gauze stuck on and hope the water lifts if gently. of course, this doesn't always work, and then i just do the "close my eyes and rip it off" routine. i'm not sure this is useful, but that's my only thought.

    thanks for sharing that sweet face with everyone!!

  6. Courtney,

    I can't imagine your pain to watch those sweet cheeks in pain, my son falls and scrapes a knee and I feel awful. Tripp is so lucky to have you!!

    I'm not an EB mommy so I have no idea if this will work but what about girly "that time of the month" pads? I don't know if they are soft enough but was thinking they are made to absorb and you may be able to stick them around the diaper opening? Just an idea, hope it's not too silly.

    I love to read your updates and pray for your family as your strength amazes me.

    Rebecca in So. Cal

  7. I have never commented, but had to say how adorable the videos are, they made me smile. He is one smart cookie! I love when he raises his hand to who is a rotten boy, I need to teach that one to my boy! I only wish I could take away his pain, he is way too cute to have to endure this! Keep strong, you are an awesome mommy!

  8. Oh MAN, is that kid CUTE! The "Who's a rotten boy?" trick with the arm raising had Angelique and me in STITCHES. Thanks for posting that video. We were thinking the baby oil might have merit. Also, if Bella has a dressing in her diaper area, I either use mepilex border lite, or cover whatever dressing I am using with a protective layer of mepitac to shield the wound from pee and poop. This has worked numerous times. I don't know if Tripp's skin can handle either of those products, but if so, they've saved the day many many times. If you need ANY products you can't get through your distributor, either Leslie Rader can ship some to you or I can get them to you (as I get unimaginable amounts of supplies right now being inpatient with a guy who lives to supply me with whatever I need. His name is Jeremy. I love him.). Much love, Tim

  9. Awh, Love the videos, he is such a sweetie pie!!!!

  10. Oh boy, he just keeps getting cuter and cuter, if that is even possible. Love the videos and thanks for the update. So sorry that he is not a morning person, but really, who is???
    Sure hope his eye starts to feel better.
    Lots of prayers are coming your way. You and Tripp are always in our prayers.
    Take care and please give Tripp a big hug and kiss for me. Love you guys. Love Leah's Nana

  11. Hey Courtney,
    Have you tried tubipad (dressing with MEGA padding)to help cushion the back of the thighs and knees? It's working good for Daylon. I have some if you need or would like to try it and I'd be happy to overnight it to you. I'm sure you probably already have something like this but Walmart sells a memory foam pad and egg crate combo (bumpy side down, of course)that we use for floor time. It's only like 15 bucks or so, which I love! As far as the actual diaper area...I feel your pain. Well, more like Daylon feels Tripp"s, but you know what I mean! :)When they stick, they really stick! Mepitel only works half the time under the transfer for us. Gerber makes a triple fold cloth diaper (thicker than normal) that I leave unfolded and then we use a soft disposable diaper over that. I feel stupid telling you this b/c I'm sure you have something great rigged for Tripp. It just helped us to min. Dayon's sores. Oh, one more thing: we saw a big-time EB doc at UCLA one time (Dr. Cotlair EB research board) and he told us to let Daylon sleep at night on disposable chucks (you can get them from a home medical supply store)so his bottom could rest from contact. The bummer is that your up switching out pads when he pees on himself and wakes up, but we're always up with our little guy so it wasn't too big a deal. I imagine things are simliar at your house come 3 am! I'll keep brianstorming! Good luck!

  12. Courtney, when he put his arm up after you asked "whos a rotten boy?" I just about died...omg, you have a little funnyman there..I have been having a rough week..and those videos made it so much better..I've got my own kids here, but Tripp always brings a smile to my face:) Bless you guys and thanks again for the 10000th time for sharing Tripp with the world..

  13. Courtney, he needs a Texas (or ‘condom’) catheter. Unlike other catheters, it doesn't go inside, it is worn over the penis so that when he pees the urine is diverted away from his sore places - typically you'd attach a collection bag to the tube.

    I really think that this may be a proper solution for Tripp - fingers crossed!

  14. HI,

    I just saw this post on my husband's aunts profile (Mrs. Joann) and I came check it out........and by surprise.......I remember your husband from a long time ago. He played ball with my Ex boyfriend and I think maybe my brother. I am so happy I got to see this blog and now I will adding another family to my prayers! Good Luck with your little man and may God Bless!

    Kristin Delaneuville Roccaforte

  15. Hello there,
    My name is Brett and I am Rafi's dad. Patient #8 in minneapolis. We've found that Tubifast works pretty well to keep her bandages dry underneath. It's not a 100% cure all, but most of the time the tubifast, keeps the transfer around her upper thighs dry.

  16. Hi there courtney,
    God drew me to this blog to encourage you. You are doing an amazing job, even if there are days when you don't feel that way.

    Laura (Australia)

  17. Thinking of you! Hope everything is going well this week!



  18. Courtney,
    Don't know if you could use it on Tripp, but maybe when you have a bad dressing change and gauze is stuck to a sore, you could spray Dermaplast (a topical anesthetic in an aerosol can) on the sore first, just so it doesn't hurt him as bad? We use it in labor and delivery for patient to spray on their "whoo ha's" after delivery and I've used it before on the kids for bad diaper rashes....very soothing. Just an idea! Keep up the good work!