Monday, February 28, 2011

Update and Help for Carson and Anton.

Ok, I know I've been a total slacker, but here's my excuse... I typed a whole blog about 3 days ago, it was long... with an update, pictures, info on other EB kids- and when I went to publish it, the computer said error and it wasn't saved and I lost everything.  It was terrible.  I was ticked.  SO, I will try now to start over...

Tripp was on 2 oral antibiotics for about 14 days earlier in the month... and that was the best 14 days of my life, no question.  He played and played in his little comfort zone.  Just walking side to side like a little crab.  Snapping (putting his two fingers together and clicking with his tongue) and then bossing anyone who's in the room to snap, too.  Shaking his little booty, playing his drum, learning more sign language.  He was also eating more by mouth (pudding, soup, chocolate).  Well, about 3 days after he finished the antibiotics (happens EVERY time)... he started going back downhill.  Not wanting to sit up much, his mouth was hurting, and wanting us out of his face (well except to rock him). 

But when he was feeling good... it was so good.  And such therapy for me.  It seems like when he's feeling good, it makes all the other little things (that I shouldn't even worry about) seem like they don't matter.  Then when he feels bad again, it's like everything is magnified.  But I can't keep him on antibiotics all the time, because then when he really needs them, he will be resistant and they won't work.  But I have to say, even lately when he's been feeling yucky, he still tries to stand up and play like a little trooper.  His eyes are taking a toll on him, I think.  They are looking so much worse as far as the tissue growing over the eyeball.  I'm really not sure how much he can see.  You can definitely tell that each day gets a little worse.  He's reaching for things that aren't there, and bringing things really close to be able to see them.  And his depth-perception is off for sure.  But he sure finds a way to get the toy he wants and know what to do with it. 

This child has like a sixth sense for music and sound.  I guess either because he can't speak and all he can do is listen to us talk and sing and play music... or the fact that I forget that he's almost 2 years old and he's smarter than I think:)  But he can tap, clap, "snap," or bang his drum to any tune.  And it's always right on target.  Even if it's a song that i just started singing, he picks it right up.  And then to watch him how he "bosses" us to snap when any type of music is playing... makes me think maybe I have a little musician or band director on my hands... haha.  No but really, even if there's music playing or not, if he wants to "snap," eveyone in the room has to snap, too.  And he will turn and look at each person, hold his arm out, and "snap" until you start snapping.  And don't think that you can just stop unless he gives you permission!  He's a bossy one.  I don't know where he gets that from:)

So, while he was feeling good, I was a total slacker on pictures and video, too.  But in my defense, I just ENJOYED him.  Every single minute of him- without the camera stuck in his face!  Though I do wish now that I had taken more video in case I ever forget what I little cutie he was in those 2 weeks!  I took a few good pictures of his heart-stealing smile on one of those good days!! :)

He has been playing some... just not as much as he was.  I'm pretty sure he has a little cold.  There's been a lot of suctioning and he's had a runny nose.  So maybe he just has to get past this little cold and then we can go back to playing more:)  Thank you all for the prayers and support for my little man.

So there's something that's been weighing so heavy on my heart lately.  And if I'm going to be honest, I really am not crazy about doing this kind of stuff on my blog... but I feel like it's important to ask you guys for a favor.  Not for me, but for 2 kids who are battling EB alone, without a family.  These two kids, Carson and Anton, have been on my mind a lot lately.  I try and imagine Tripp living this life alone- with no family and no one to give him that close, undivided attention that he gets here from us.  It literally makes me kind of sick to my stomach to think about Carson and Anton (and any other EB babies out there) living this horrible life of EB with no one to call family.  There is a family in CA, the Cannells, who have committed to Carson.  The only thing keeping Carson from being able to come to the states and be with his "new" family who wants to take care of him is "money."  They are about $20,000 short.  I know that seems like a lot, but I know that there are a lot of people who read this blog and who want to do something to help.  Well I'm asking you to help this family bring Carson home.  There are two sites available to donate for Carson.  I will list them below.  And Patrice has created a blogsite for little cutie Anton.  I think there is also a family who is thinking about taking Anton (if you haven't read his story, please visit his site below and do so... it's so heartbreaking).  And I believe the only thing stopping this family is also the financial issues.  So please... even if it's $5.00- help these little boys be united with a loving family who is willing to care for them and give them the love they need to survive this horrible disease.  I know it's hard for anyone who does not have to see this disease and what it does to these children on a daily basis... but for me- it breaks my heart knowing that they are sitting in a hospital bed or an orphanage- only with caretakers who come daily to take care of them, and then leave and go home to their own children and family.  These kids deserve a great home and so much love and I hate that money is the only thing holding them back.  So like I said, I don't like doing this, but if you can, please pitch in and help Carson and Anton.  Aren't they so cute??







  1. Hi Courtney~ Package is in the mail for you and Tripp! I hope he enjoys the fun little songs I sent! Thanks for the links to Carson and Anton~ it is so heartbreaking to think they are alone. I am hosting a baby shower for a friend and will donate money that would have gone to party favors!

    Tripp looks adorable... all smiley! Have a wonderful week!

  2. Hi Courtney: Thanks for the update. I was wondering how that remarkable son of yours has been lately. So glad that he is still playing a little bit.
    Love, love, love the pictures of Tripp. He has the most amazing smile. Love that son of yours. Hang in there guys. He is so lucky to have you guys in his life.
    Just donated to Carson, and gave before to Anton. God Bless these EB babies.
    Love you guys. Love and Peace. Leah's Nana

  3. Thank you so very much Courtney for sharing our story. I have been following you and little Tripp for sometime now. You are an inspiration to me and many others. Carson will get home faster because of you :) We are so grateful!
    Blessing! Karrie Cannell

  4. Oh,thank you so much for the update.And I am so glad you are getting to enjoy Tripp's smile again it is gorgeous. Will continue to pray he fights off this cold and gets to playing again like he has been for you.

  5. Thanks for posting an update on your sweet little man! I will visit the sites that you posted and also pass them along!

  6. Hi Courtney,

    I have been reading your blog for about a year now. I am actually from North Louisiana (I attended ULM), but am now in North Texas getting my master's in music therapy. I was wondering if any music therapists have worked with Tripp. I am not exactly certain of your location, but I know there are some music therapists at the children's hospital in New Orleans. It may provide more enjoyment for him than anything else, but it can also help with pain management. Just thought I would mention- it might be something worth looking into. Please contact me if you have any questions. Praying for you and your precious little boy.

  7. A great report...wonderful pictures. Many prayers being sent for additional miracles for Tripp. Thanks for the info on Carson...just left a donation. Had trouble doing the same for Anton, but will work it out. Thanks again for letting us know. Love to you and Tripp!!!

  8. Precious Tripp - I'm glad he's had some happy days and am praying he'll get over this cold too. We are praying for him daily!

    Praying also for Carson and Anton and am making donations.

    Hope you and Tripp have a good week!
    Love from TX,

  9. I'm SOOOO happy to hear that Tripp has had a good two weeks and got to enjoy himself. I will pray that he will start to feel better again soon and back to his old self. You're such a strength to me! Love you!

  10. I love seeing the smiles of Tripp ... is so good to know that he has played ... is so good to know that he has had good days past.
    I think both you guys during the day, and ask God to give you good days.
    Thanks for the wonderful pictures and news.
    Kisses with love
    Sandra Afonso - Portugal

  11. Hi, i was reading a few blogs and your page came up. I just wanna tell you that you're really strong! And i hope that your child will live a long time! Hugs from Sweden.

    From Natalie (

  12. It's good to read an update on Tripp. I can relate to what you mean about the good days. My daughter doesn't have EB, but she has LGS which is a severe epilepsy syndrome. She has had a horrible time with seizures lately, so when she has a good day with very few seizures, it's such a relief. It just relaxes my soul. :)

  13. It's been a few days so I'm just writing to send you prayers and love. Hope all is well, or at least better. You're in my prayers!!! Jan

  14. Hi! I've been reading your blog for a while, but this is the first time I leave a comment. First I want to tell you that Tripp and you are always in my prayers, he is an amazing little boy and you are an amazing mother.
    I also wanted to tell you that I've just checked Reece's Rainbow and baby Anton has a family committed to him!! Isn't that great?

  15. Just found your blog and I am now a follower, I admire your courage for talking openly about your beautiful son. His smiles are so adorable and I love his chubby little cheeks!