Monday, May 30, 2011

This kid is the BEST.

No hospital for us- we are still home!  I really have no words to describe how tough my little man is.  He possibly could be superhuman.  I do not know where he finds the strength to even smile, much less stand up and play.  His vision is gone... I don't think he can see anything anymore.  And his mouth is beyond horrible.  He lives with infection after infection, covered in raw open sores.  And he can still smile, laugh, play his drum, and cop an attitude with the best of them.  I'm so thankful that he's feeling well enough to play.  And as long as he's feeling well enough to play- we aren't going NEAR the hospital.
Here's a small look at where we've been and where we are now... :(

One month...

One year...


Yesterday... (check out that poor baby's eyes)


See what this horrible disease has done to my man??
I don't know how he still smiles that amazing smile!!!



He's such a miracle.  And to me, just as handsome as ever!

I am guessing the antibiotics helped him because the fevers have stopped and he's feeling well enough to play some during the day.  He finishes up the antibiotics tomorrow.  He's just been sleeping a whole lot lately.  And of course, has no type of schedule whatsoever.  Sometimes he will wake up at 2:00 in the afternoon, sometimes at 8:00 in the morning.  Sometimes he'll go to sleep at 2:00 in the morning, and other times he will get in his bed around 8-9 at night.  It all depends on how he's feeling, how well he sleeps without waking up through the night, and if he takes a nap or not during the day.  

Baths have been tolerable (of course I am not talking about the "water" part- that will NEVER be tolerable for Tripp, my mom, or me).  But the process of putting all the dressings back on has been pretty good the past few baths.  He's been quite the little clown- snapping, clicking his tongue, shaking his little booty... all the little cute things he does while listening to his music.  He instantly feels better after his baths.  He will play and play for sometimes hours after a bath.  His little personality is getting cuter and cuter every day.  Yes, he can be a tad bit mean sometimes... but put a hundred sores on you and take away your eyesight and see how nice you want to be:)  So what do we do when he's mean??  We laugh and encourage it:).... judge if you would like.  We may be creating a monster, but he's the cutest little monster I know. 

My mom is my hero.  Have I mentioned that?  I think a lot of times I take her for granted.  I know not everyone is fortunate enough to have a mom like I do- a mom that is supportive of you no matter what.   She would literally do anything for me.  And she HAS done everything for me these past 2 years.  Starting by driving to Norco (an hour there and an hour home) at least 6 days a week since Tripp was born to help me.  And then last July, welcoming Tripp and I into her home with open arms- no matter what kind of drama and obstacles came with us, while dropping everything to help me with Tripp 24/7 (which would be impossible on my own).  I just assume sometimes that every mom would do these things for their child, when that's not the case.  Thanks Mom- I know these past 10 months have been rough.  Thank you for listening, putting up with my mood swings, and most of all for trusting me enough to step back and let me learn from my own mistakes.  I know I tell you this every day, but it's the truth- I would be in a crazy house if it wasn't for you.  And I appreciate all the sacrifices you make for us. 

And here's some awesome news- between the two posts from Patrice on her blog last week, my last post, and all the people that have shared the Cannell Family's story on Facebook... they have raised approximately $8,000 in close to 10 days.  Their total amount of funds raised is over $16,000!  That is AMAZING.  But we cannot drop the ball yet- they still need around $20,000 more before they can take these boys home!!  SO Please if you haven't donated to this family yet, click 
and join all of us in bringing Carson and John home!!
Even if it's $5.00- every little bit helps!!
Thank you from the bottom of my heart to all of you who have donated. 
It will be because of you that these boys will have a new and better life. 
I can't wait to see and share pictures of them with their new family!!

Love,
Photobucket

19 comments:

  1. Courtney, you are such an amazing mom and Tripp is an unbelievably strong little boy. Thanks for sharing the ups and downs of his little life. I know it must be so hard sometimes. Praying for you and your precious son! I hate EB :-(

    ReplyDelete
  2. We will bring those darling boys home, and Tripp is as handsome as any little boy could be, and yeah for his attitude and yeah for you cheering his mean moments! Yeah for your mom and always for you darling mommy!!!

    ReplyDelete
  3. Love this sweet boy more and more!!! praying for my Little Hero and his family... and waiting for a miracle! i wish it soooooooooo much!!!!!!
    Kisses from Italy,
    Marina Sh.

    ReplyDelete
  4. He is just so sweet. I've been following along, and I don't know why but each time you post about his eye sight being gone, it just breaks my heart. He certainly is amazing. And you too!

    ReplyDelete
  5. I donated to the Cannells on behalf of Tripp. He is an amazing boy, and you are an incredible mom.
    Keep spoiling him rotten-- I would do the same.

    ReplyDelete
  6. It's that smile that keeps me coming back to your blog!! Such a happy soul in that boy!!

    ReplyDelete
  7. I've said it before, but Tripp is amazing. That smile just melts my heart! I'm SO sorry about his sweet eyes. Hope he is able to stay out of the hospital - praying for him and for you!

    Love from TX,
    Laura

    ReplyDelete
  8. Hi Courtney: I just love the smiley picture. How Tripp can smile like that, being in so much pain, is a miracle to me.
    Love that son of yours. Praying every single day for your whole family. Keep the Faith and keep up the great job of being the best Mommy in the world. Give Tripp a big hug for me. Love you guys. Love and Peace Leah's Nana

    ReplyDelete
  9. Wow, EB is such a terrible disease. Such a cute face masked by horrible scars. Is there anything you can do to help his face? He's a trooper. Your selflessness is truly what has brought him through this far. You are a wonderful mom! Will pray for perseverance for you and Tripp!

    ReplyDelete
  10. Sweet Tripp. You don't know me, but I've been around this blog from time to time. I know that God is using this boy (and his mother) to do big things. It's so hard to watch our children suffer - I am so sorry. But his smiles sure are amazing!

    Thank you for advocating for the Cannells.

    God bless.

    ReplyDelete
  11. We never met But I can tell you YOU are amazing!!! Trip has a truley wonderful mom!!! You are inspriring to so many with your positive and loving ways. Love following your blog. I will continue to Pray for your family and celebrate with you! Blessings Deb

    ReplyDelete
  12. I have read through your story the last few days and my heart aches for you and your adorable little boy who has got to have the cutest little personality ever. Thank you for your stedfast example of true love and faithfulness through the hardest of times. You will be in my prayers often.

    ReplyDelete
  13. My heart hurts for Tripp. I cannot imagine going through what he goes through and still he has a smile on his face. You are an amazing mother, staying strong and cherishing every minute that you have with your amazing little man. You are a very admirable woman with a very courageous son. I pray that Tripp may be comforted through this.

    ReplyDelete
  14. I just found your blog through the WWL link that was put on Facebook. You are an amazing mom with an amazing baby. I laughed and cried for 2 hours reading your blog. I love his drum routines. You have quite the talented young man. I have never heard of EB before now. Thank you for educating me about it by telling your story. You and your family are in my thoughts.

    ReplyDelete
  15. I just watched some video's of Tripp. I LOVE the one of him laying in your mom's arms dancing and clicking his tongue in perfect sync to "I'm Your's". One moment I am crying, seeing all the sores on him and the next I'm smiling and laughing because it doesn't seem to phase him. I am in awe of him. He is so inspiring and has touched my life. To be honest, I'm fearful of checking your blog, afraid of what I might see. But seeing him smile and laugh, that makes my heart so happy.

    ReplyDelete
  16. Courtney, Just came across your story and Tripp has completely stolen my heart. Your family and sweet Tripp will be in my prayers daily. Happy Birthday to Tripp! I will look forward to see more of his concerts and dance moves- so awesome. (Maybe a Mozart on the horizon?) I can tell you that you are an inspiration and your little man is touching lives around the globe. I don't have any understanding or insight to help with understanding our Heavenly Father's plan, but am truly moved by your faith and trust. You are speaking volumes to so many who need to hear your story and what it looks like to 'walk the walk'. Thank you.

    Just donated to Carson and John's fund. Praise God for families like the Cannell's!
    God bless you Courtney & Sweet baby boy Tripp.... Keep moving to the beat!

    Wend Bergerson
    Native New Orleanian in TX

    ReplyDelete
  17. I was truly touched by your story...
    Tripp is so amazing.

    God Bless!

    ReplyDelete