Thursday, March 18, 2010

Talk More Thursday... Sorry.

SO... we went to another eye doctor (we've seen him before, but it's the the one we went to last time.)  This is the same doctor that was recommended our first visit.  Anyway, THIS TIME they put some stain is his eyes and they could see that the top layer of his eyeball is almost completely sloughed off.  Yes, I know.  Crazy.  So it wasn't just an abrasion, he probably had an actual blister on his eyeball.  The doctor didn't really know much about EB, but he talked to a corneal specialist and he said that if he has rubbed a blister on his eyeLID too, that the eyelid could be what is rubbing on the eyeBALL and causing the trauma.  So he said option 1 was to just keep the ointment in at all times and provide a barrier.  Option 2 was putting a contact lens in to protect the eyeball from the eyelid or from anything else.  And Option 3  was surgery.  Surgery will consist of smoothing out of the eyelid and then applying a layer of amniotic tissue over the eyeball to protect it and try and heal the eyeball.  I've pretty much already been doing option 1, so I chose option 2.  I was actually the one who recommended the contact lens idea BEAUSE of another AMAZING EB mom, who e-mailed me.  Her son Ryan also has JEB and was having the same problems.  She said the contacts have worked for him.  Thank you so much, Denise... I am forever grateful.. even if it works for a day!  So first they tried putting the contact in with us just trying to open his eyes with our hands.  That DID NOT work.  He can close his eyes SOOO tight.  It's impossible to get anything in there.  So next was the speculum.  I was totally ANTI-speculum because Ryan's mom told me to avoid it if at all possible.  But it was the only way.  And so far I haven't noticed any trauma from the speculum.  We just had to hold his head REALLY still.  He was so hysterical.  I was completely nauseous and almost had a nervous breakdown.  I will definitely need a sedative next time.  Tripp and I both.  But we finally got it in his eye and he was like a totally different baby immediately.  So we will see if the contact will help his eye heal.  We go back in one week to check it all out... unless it comes out before then.  We ABSOLUTELY have to keep his hands away from his eyes.  So I'm looking into putting something under his elbows, over his bandages and wrapped to his arms so that he can't bend them to rub his eye.  I may only use it at night... or if he doesn't completely freak out, I can try it during the day, too.  So we have to keep our eye on him every single second to make sure he doesn't rub (we do that anyway... I know.)  He had a very traumatic day!  And can you imagine the pain that he's been in with an eyeball that's been SLOUGHING off??  God Bless him... I am SO glad they finally found out what was really going on.  I knew that I have been seeing a film over his eyeball, but I thought it was just a film from the blister on the top lid.   Never did I think it was the actual top layer of his eyeball.  Wow.  Anyway... THANK YOU, THANK YOU, THANK YOU for all of your prayers.  I am SO grateful!

Ok, so I don't even have the words to express how totally awesome my blog readers are. I promise you that I would absolutely NOT be able to make it through these tough times without the kind words and support from all of you. I literally bawl when I read the comments that left after I pour my heart out in a post. There are people from across the country who have no clue who we even are, that pray for our family every night. OUR family gets included in daily prayer from so many kind-hearted people. It is truly touching and almost sureal. My strength I know was given to me by God. But the day to day, minute to minute struggles that I face are made easier by the kindness and support from all of you wonderful people who read this blog, follow the story of Tripp's life, and who support me whether I am happy and thankful or down in the dumps and ticked off! That means more to me than you all will never know. How lucky I am to have so many people who care. Thank you.

Now for all you absolutely amazing, fabulous EB moms who read my blog and email me with suggestions, opinions, support, a shoulder to cry on, ETC... I love you all. God obviously chooses us because we can handle it, but my God... I don't even feel like I fit into a category with all of you wonderful people. EB moms must be the strongest, most caring, most patient, and selfless people I know. Thank you all for you support in these rough times. When I feel like I've hit rock bottom, you all are there like an army to pick me right back up. God Bless all of you. I wish I could find each one of you and give you a big fat bear hug, because I KNOW you know exactly how I'm feeling right now.

I will let you know how Tripp's eye is doing either this evening or tomorrow.  I am hoping and praying that the contact lens will be able to stay in and help with the healing and the pain.  Thank you all for your support.  And please continue to pray for our little man.  He is such an angel.

Here's some pictures from today.  He was SUCH a good boy and AMAZING as always!  His eye is still green from the stain.  I don't know how long it will stay green, because I will probably need to flush it with saline to get the green out, but I can't with the contact lens.  As long as it feels better, I don't care what color it is!!

And here are some pictures from the past week, since it IS supposed to be "Talk LESS Thursday"!

Daddy, MeMe, and Tripp

Paw Paw Carey and Tripp

Daddy, Paw Paw Randy, and Tripp

Great Maw Maw Betty and Tripp...

God Bless, 


  1. a contact lens...BRILLIANT! I never would have thought of that. About the elbow thing...would a piece of soft foam (like the packing foam you can get) secured over his bandages work? That might be stiff enough so that he can't bend his elbows a lot and get his hands up to his face, yet soft enough that he wouldn't hurt himself. I think it would hold in place too, since it's kinda stiff. You could cut it to fit his body even.

  2. I'm glad you were able to find out what's going on with his little eyeball. I love the way you post eyeBALL and eyeLID.. You are so thoughtful, it shows in all the little details. You are so right God picked YOU for a reason. I could never do your job. You make me a better mom. God bless you and prayers are going up, up, up... :)

  3. Tripp loved my baseball cap... I'll bring him my hardhat.. it has protective goggles


  4. So glad you've (hopefully)found the trick to sweet Tripp's healing! I enjoy your blog and love pictures of your cute little man! Praying for you ALL!!! :o)

  5. I just want you to know that you and Tripp are so loved by me and the girls at my office. We love looking at pictures and reading your updates, and are inspired by you and your husband's strength.

    We are all praying that his eye is better soon and that the contact works!

    Sending lots of love your way :)

  6. Poor little guy with all of his eye troubles. I sure home the simple and easy contact solution works well. The idea of foam to stiffen his arm to keep him from bending it and scratching his eye is a good one. All I could think of was the lampshades that dogs wear! Praying for quick healing for Tripp's eye.

  7. Courtney, I am sooo happy they've found out what is going on and he's finally gotten relief. Still praying my heart out for you guys and wishing I could be there to hug you.

    On a completely different note, OMG, where did he get that polk a dot Fuzzibunz? Cutest Ever.

  8. I'm so glad that there was something that helped. I hope his eye heals quickly, I'll continue to pray for you. At least green is the color of the month of March. :)

  9. YEAH, Praise God! I'm so excited for y'all that something is working. And now we pray for complete healing -- for a cure for EB for ALL sufferers.

    This really made my day. :) YAY TRIPP!!!


  10. Wonderful that the lens worked!! I will try it on Elly if the eyeproblems returns. Keep up the fight, you are a suuuupermum!!!!!!

  11. There are soft braces that some kids wear on their arms to prevent them from touching their face/eyes. They are called "no-no's."

    Here is a link to one company:
    Snuggle Wraps.

    - Sarah

  12. Just wanted to link you to a couple solutions ....
    We use these for my son to help reduce contractures...Very useful and adorable to boot...

    These would probably work as well

    Either way both could go on the outside over his bandages...

    Hope this helps


  13. I have never prayed so hard for someone I didn't know in real life... but he's just so cute :) Please know that Tripp is always in our prayers and I'm so glad to hear that you find something that might be able to help!

  14. Dear "Little Knight",
    I am sooo dumb when it comes to computers. I finally figured out how to respond to your Mom's blog. I send comments to Caringbridge but your Mom updates her blog a whole lot more and sends all of your adorable pictures.
    I'm so sorry about your eye problems. My sister stuck a mascara brush in her eye and they put a contact in it to help heal her wound and it worked!
    Courtney you're amazing. It must have been awful being in the room during that procedure but you ALWAYS find the strength to be right there for Tripp. I know you're voice brings him comfort. I still pray each night for the three of you just like I have done since my husband came home and told me about Tripp.
    Take care-

  15. Oh what an ordeal. My heart was racing just reading how hysterical Tripp was. I simply can't imagine his pain and your pain as his mom. Thank goodness for the contact. Praying hard as always for your sweet amazing Tripp!!!

  16. You inspire me. Your motherhood is nothing short of stunning.

  17. I have never commented but I have been praying for Tripp for a long while now. It's time I delurk! :-) I do have a suggestion. I KNOW this sounds awful, but they do make arm extenders that keep a baby's arm completely straight so they can't touch their face. If you can't get any true medical ones then take heavy cardboard and put it behind the elbow and tape it to his bandage/clothing. He can't get to his face then because the elbows are completely straight. He won't like it but it will help him stay away from those beautiful eyes.

  18. Tripp, you are such a strong little boy! I am so honored to "know" you! I pray for you and your mommy, daddy, and all your EB friends every night! I will pray extra hard tonight that your new contact does the trick! I have contacts too...try not to rub your eyes! I have trouble remembering that, too, but with practice you will get use to it! Sending you lots and lots of love!
    Tracie (from Ga)

  19. Phew! Now that's some good news! Who would have thought...poor guy! Praying the contact lens frees him of some pain and gets that eyeball healin'!!
    EB moms ARE amazing, don't even count yourself out!
    Have a great weekend, Courtney!

  20. Oh my!!! Bless his sweet little heart. Man oh man. I dont know what to say. I am so sorry you have to watch your baby go through this. Life!?!?!?!? I will pray and pray for a speedy painless recovery. You are as good as they get my dear. Bless you all.

  21. Again, what an amazing mama. I really don't know exactly what it feels like to go through what you are going through. When my kids or grandkids have ONE booboo, it is bad enough! Your love shines through it all and Tripp knows that too or he wouldn't be able to get through all of this pain either! I will keep up the prayers to our Heavenly Father...He hears...He knows....He is walking beside you every step of the way. Love.....

  22. Praise God! I've been praying for Tripp (and you) like crazy these past few days. I'm so glad to hear that you had such a brilliant solution with the contact lens! I'll be praying that it does the trick for him. I can't even imagine the pain he was in. Poor little guy.

  23. Poor momma... I know it is so hard to watch your children cry like that. I am so glad that you have a network of moms that are able to give you good advice on how to handle EB situations. I know for myself, having raised children without a network, and then with one, makes a WORLD of difference. I don't know how I made it without my mommy friends (my online community).

    He is a beautiful boy, Courtney. I hope he feels better soon.