Sunday, July 31, 2011

My miracle.

I'm somewhat speechless over these past 2 weeks.  Never in my wildest dreams would I have thought that so many people could love my little boy.  The support that we have received has not been limited to family and friends- it's now turned into perfect strangers and people all over the country (and some even outside of the country).  Sometimes it doesn't even seem real.  Watching the video from last Monday night at Tripp's prayer vigil- was completely humbling to see so many people gathered together praying for my son.  It brought tears to my eyes to see pictures of people lighting candles and bowing their heads for my son.  And it gave me chills to see the video of all the amazing things that took place that night- all for my son!
So once again, I say THANK YOU.  
For your prayers, your support, and your encouragement.
Thank you to everyone who have sent cards and are doing (or have done) fundraisers for us!
I am so proud that Tripp's name has raised awareness about EB.  That is SO important to me- a voice for these children living with this disease who either didn't live long enough to have a voice, or whose voice is yet to be heard.  I'm so proud of my little man- fighting hard every day, just to touch one more life. 

Here is the beautiful video of the Monday night prayer vigil that two great photographers, Brenda Sison and Michael Lovett, put together for us. 



My Tripp is the definition of a true fighter.  I am so happy to say that he has started feeling better in the past two days.  Needless to say, the last 2 weeks have been some of the toughest of my life (emotionally).   I have never seen him anywhere close to being that sick.  I thought he had completely given up and was ready to stop the 2 year fight that he's had.  And I couldn't be more proud to say that I don't think that's the case yet.  Between Dr. D, Dr. Benson (our local dermotologist and family friend), Trea and Amber (Tripp's super fabulous pharmacists), and myself- we discovered that this 3 week period of high fevers, extreme pain, and horrible excess of blistering could have been a product of the herpes virus.  We started figuring it out when I got a fever blister about a week ago (and I've never had a fever blister in my life).  The type of herpes virus (which is common in children and obviously adults that get fever blisters) can be almost as painful as shingles.  Which could explain the amount of pain that he was in.  And with the virus, you can also run very high fevers (which would explain his 105.2 fevers).  This type of virus (bare with me, I'm not too familiar with this) can also cause lesions in your mouth/throat.  Which could also explain his pain and why his mouth/lips were so swollen.  Dr. Defusco had mentioned this once before when she noticed little clusters of blisters on the tops of his hands that looked different.  At that time, which was about 2 months ago, we started him on Acyclovir (an antiviral), just to be safe and then never really thought about it again.... until I got my fever blister.  Then she started him back on the Acyclovir (this was last Friday).  And about 3 days ago, the horrible horrible black sores/scabs on his face started to dry up and to heal and gradually, the tremendous amount of pain started to subside.  

This was also around the time of the two prayer rallies...
 Could it be the thousands of people who have united in prayer?  I'm definitely a believer of "prayer in numbers"- as you already know.  And I truly believe in Tripp's miracle of healing.  So just as I believe that this antiviral medicine could be what's causing him to feel better, I just as much believe that it could be from the power of prayer coming from all of you in the past week.  

I hope you all believe it, too.  I hope you see and feel how God is working through all of you.  I have so many people that are concerned about us that I can't even keep up with my messages and e-mails.  It's amazing.  I am completely awestruck.  There are people who write me telling me that reading our story has changed their lives.  Do you know how touching that is?  There aren't any words that I could use to describe what that feels like.  I'm going to be completely honest.  The reason why none of this seems real is because I don't feel like I am doing anything different that everything that I am supposed to be doing as a mother.  I have wanted to be a mom since I was about 12 years old.  I have loved children my entire life and dreamed about having children of my own.  Am I a good mom? Of course... but for me, there was no other option than to step up to the plate and fight with everything in me to give my child everything he needs- healthy, sick, disabled, or whatever comes our way. 
Why?  Check out this video from yesterday... 
There is nothing more rewarding than this smile...


This video was taken yesterday right after Sister Dulce (a healing nun from Baton Rouge) came to our house, blessed him, and said she will take his pain away.  We've seen Sister Dulce before, about a year ago, but since we couldn't make the trip to see her again- she came to us.  I am so grateful because she is a very busy woman.  And a mighty woman of God. 

Even though little man is feeling better, he still hasn't stood up (or even SAT up), but the past 2 days, he's been almost back to his fussy, rotten little self.  Now, I hate to even post this because I always, always jinx myself and right after I say he's feeling better, he spirals back downhill... but I couldn't hold out on my faithful prayer warriors any longer :)
He's still on a tremendous amount of pain medicine- and I'm pretty sure that even before all of this, he needed better pain management.  So I'm thankful that we switched pain medicines.  He's on a really high amount, but I can always tamper down little by little if I need to.

This was his face 2 weeks ago...


And this was his face last night...


Does it have anything to do with the community/world coming together in prayer?
I think so :)
Please keep the prayers coming- I know they are working.  
Not only in Tripp's healing, but in bringing more and more people back to God.
And at this time in the world, there is NOTHING better than that!!
This kid is touching lives and taking names... 
He's my miracle... whether he's around 10 more years or 10 more days.
I love him so much.


WWL Channel 4 and WDSU Channel 6 were both at the prayer vigil on Monday.  
In case you missed it, here are the newscasts...










                                    Love,
Photobucket

70 comments:

  1. So so SO happy to hear little tripp is doing better! That face photo.....there are no words. He is so brave, and so are you!

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  2. Courtney, isn't amazing how many children are praying for Tripp? I love that~ Prayer Warriors are still on a straight and narrow path to having God hear our prayers... Nothing can stop us! Hugs from Meme!

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  3. God bless sweet little Tripp! Y'all are on my mind every single day.

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  4. His face looks soooo much better! I'm glad you and the doctors figured out he had a virus! We have been praying constantly and won't be stopping anyrime soon. You and Tripp are amazing and how Tripp has brought so many people together and brought people back to believing and praying is wonderful. We love you guys and have never met you. We check multiple times a day to see his progress. We're here for you!

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  5. Amazing!! He looks so good. I can't believe how much better his little face is doing. The power of prayer is amazing. I hope that the herpes goes away and that it was truly the cause for his increased distress. He is SUCH a doll baby. Thank you for sharing him with us! :)

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  6. That video cracked me up - what a stinker!! :) Can't get over how much better his face looks already. Sooooo glad for all of you!!

    Looking forward to more video smiles!

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  7. Yes! Tripp, you keep taking those names because the love for you is just gonna keep growing!! Prayers for Tripp, always. You all are a light shining forth to help us all find our way. God is great! <3

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  8. The pictures are amazing. he looks so much better ! Has your dr. thought about giving him breastmilk? Ive just recently heard about another disease where the baby is treated with the donated breast milk otherwise she gets really bad, and even if its a completely different disease (Krabbe), it shows the healing powers of breast milk for sick children. I dont know, just a thought... Sending tons and tons of prayers !
    Molly

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  9. I am grinning from ear to ear! Tripp's skin looks so much better! This is such a huge blessing! Tripp will continue to be in my prayers. I think of him throughout my day, praying for his comfort and healing. He also prompts me to re-evaluate what is important in life. Such a brave little boy! And good job Mama and Grandma!

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  10. Courtney,
    I would like a shirt like everyone was wearing I'm the video. Can you tell me how I could get one?

    Kim

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  11. This is a perfect example of not a choice between God and science, but a convergence of God and science. I am utterly blown away by the two photos, and so relieved that you have not only the army of prayer warriors by your side, but a medical team that will NEVER quit on Tripp, or you. Our little EB babies have definitely made the world a slightly better place to live, for they have brought - as you said - so many back to God and prayer. We are so lucky to be their parents. What a blessing, in deed. Our love is with you ALWAYS. Tim, Ang, Ali, Bella, and Julian.

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  12. I'm so happy he's doing better!! I loved the video. So sweet! Such a wonderful baby and such a wonderful mama! Love you!

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  13. We love you all so very much!!! Thank you for allowing us into your home and your heart. Tripp has completely changed my life and my faith in God. You will never know how truly amazing you two are. I will continue to pray now, later, tomorrow, next week, next month, next year, ALWAYS for your family. We love you Courtney and Tripp

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  14. Oh Tripp, I am so glad you are feeling better. Praying for you, little guy!!!

    http://hushandbreathe.blogspot.com/

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  15. It is so wonderful to see others that have complete trust in God! You are an inspiration to many. Since I read your story, I have wondered if you had Blessed him with Lourdes water? Being Catholic, I imagine you have, but if not I would love to send you mine! Please email me if you would like it sent. You and Tripp will continue to be in my daily prayers.
    GretchenARod@aol.com

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  16. Simply Amazing! God is so very wonderful <3

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  17. I love the video of him shaking his head no and then yes. He is too adorable. He knows he is kidding about not loving da mama. What a kid. How can you not help but just love him to pieces? He is a true hero!! What a wonderful family he is blessed to have.

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  18. I am so glad his face is starting to heal. He is such a wonderful sweet and beautiful little Angel. He amazes me so much. He is in my prayers every night and always will be. Keep fighting Tripp. We are all here for you.

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  19. I've been following your story very closely for several months now. Your overwhelming love for your little guy comes through in every one of your journal entries. He has experienced more pain in his two short years then most people do in a lifetime. I know as a mother you feel is pain many times over. I'm so glad he is feeling a bit better. I hope you have someone caring for you too.

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  20. Ooh Courtney, this post has made my day. He looks so much better. Thank you Lord. We will keep praying.

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  21. Courtney, you truly made my day. I will always keep praying for him and you. I am waiting for the miracle to happy. Tripp is a fighter and so are you. I am so happy that Tripp is feeling a little better. Love you guys

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  22. SWEET ANGEL BABY TRIPP!!!!! Praying for you every day!

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  23. Not a day goes by (especially since I read about your journey) that I don't take time to thank God for all of his blessings. You are an inspiration and the true definition of love. Stay strong and continue to feel the love and prayers we are all sending your way!!

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  24. i'm so happy he's feeling better! EB is horrible. But these kids and families touch so many of us and make us be a better person.

    Love the comment above:
    "You are an inspiration and the true definition of love".

    love from the island of mallorca
    Juana
    Proud member of Debra Spain

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  25. Oh, Courtney. I have fallen head over heels for your small, charming and tough to son. Tripp is sooo amazingly cute in the video when he jokes with you and pretend that he does not love his mother. Wonderful cutest little Tripp.

    I can not express how happy I am that Tripp now feel better again. His sweet little face has improved tremendously. Really nice for him that he can joke and play around a bit and that he does not have severe pain.

    Now over to something else. I know that you have examined the possibilities of BMT. However, I do not know if you know the local injections directly into the wound treatments EB sufferers can get? (Certainly something you already know?!) I read about it the other day, I am so rude that I write it here.. cause.. WHAT IF you were not aware of that possibility?!?!

    Many hugs and love for Tripp, you and your entire family!

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  26. I have been reading for awhile and only commented a few times but I have bene praying for Tripp, you, and your family and I will continue to do so. It is amazing what prayer can do!! So glad he is feeling better and those pictuers you can tell he has gotten better, prayer definitly works!! Stay strong Momma!!

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  27. Awesome!!! I think of Tripp every day and especially when I am losing patience at my little monkey the same age. It immediately changes my attitude. Thank you both for making me a better mother and person. Today I was teaching 10 year olds in Sunday School and we were talking about Christ and the ressurection. We believe that because of Christ we will all have perfect bodies again. I thought of Tripp and was so happy to think that after all his pain and his EB trials in this life, that he will once day have a wonderful, perfect body to run around in.

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  28. Last Night, I prayed and Prayed until I fell asleep for some happy news! :)
    Tripp is an amazing little boy, and through his story I have learned alot, I first found your blog about a year ago, and have been following ever since. I love sweet Tripp. And I'll continue to pray for him and your family.
    Lots of Love, and Prayers to you! :)
    Amanda

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  29. Absolutely! PRAYERS Work. This is what I believe: "The object of prayer is not to change the will of God, but to secure for ourselves and for others blessings that God is already willing to grant, but that are made conditional on our asking for them. Blessings requires some work or effort on our part before we can obtain them. Prayer is a form of work, and is an appointed means for obtaining the highest of all blessings."
    Remember: "Faith without works is dead." Prayer is a form of work.
    Happy to be 'working' for you:)

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  30. Also...there is a reason people are amazed by you. You say you are just doing what a mom should do. Yes. But there are moms who have walked away from their children for much less a reason. Plus, I think you are so patient, positive, full of faith, and loving. I lack a couple of these things and I don't have near the burden. So for myself you are an example of how I need to be with my 2 boys. You also have a gift with writing and expressing to us Tripp's journey. You are so eloquent. And such a great advocate for your son. So yes, you are amazing. I hope during the hard moments you feel all our prayers and are lifted up.

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  31. I can't believe how great he looks!! I hope things keep moving in the right direction.

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  32. This is the best news I've had in a week! I am so elated that Tripp is feeling better and that you have such an amazing team of people around you. People are def praying for Tripp in tremendous numbers...I've passed his name on to every church person I know! Praise God, praise God, praise God!!!!! May God continue to bless your beautiful baby boy. Tripp's smile, personality, and spirit light up the lives of all around him, even us who just know him through your blog. We love you Tripp!

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  33. So happy that Tripp seems to be feeling better and that his doctors figured out what might be wrong. His face looks so much better than it did 2 weeks ago. There is no doubt he is a fighter. That is great that you got to see him smile again. I know that must have been wonderful for you to see. Will continue to pray for him and you.

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  34. So glad to hear the news. It was wonderful to see all the families together in the video. Prayers continuing for you and that smiling boy.

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  35. praying and praying.
    thank you for the update.
    We look forward to each and every one.
    God knows and loves and cares.
    Be blessed Courtney.

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  36. continuing to pray for you and your sweet little boy! so thankful for the update and for his smile :)

    god bless y'all!
    susan,
    w-s, nc

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  37. I am so happy he is improving. I had the virus with the mouth sores a couple of months ago. My mom actually works for a doctor who himself had it and so did his two year old.

    You are always in my prayers (your whole household), and I BELIEVE that prayer is helping Tripp. Though there is likely a medical explanation for what the past two weeks have been, the doctors, needed help to figure it out. Prayer. We prayed and you got a fever blister! God is good!

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  38. Thank you so much for posting this "beauty full" update. Our family will continue to pray for Tripp. He has certainly touched our lives.
    Sending love from Australia

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  39. Thank you for sharing your journey with us. Tripp has certainly been in my prayers and will certainly stay there. Our God can heal him and that's what I've been asking for.

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  40. Hoping this post will "take" this time! So glad that Tripp is doing better. My Jackson (he's 7) will be SO glad to know Tripp is smiling - he asked me a few days ago if Tripp could still smile, and it almost broke my heart to tell him Tripp was just hurting too much.

    We all love you and are still praying for you here in TX!

    Love,
    Laura

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  41. So glad Tripp is doing better!!!!!

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  42. Have been following your story and am so happy to see your baby is doing better. Thanks for updating.

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  43. Such wonderful news! Can't stop thinking about y'all. Was hoping there would be good news here tonight. Continued prayers for your beautiful boy and you.

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  44. I just found your blog a few weeks ago, and have not stopped thinking about little Tripp sense. I have been checking back daily for up dates, so glad to hear he is doing better. The video was amazing, the amount of prayerful support..This is what we all SHOULD do when some one is in need. Gives me faith in humanity. Add me and my family to the list of people sending prayers

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  45. Such great news!! I am so happy that Tripp is feeling a bit better. I have been praying that you could see him smile again and not only did you get to see him smile again, we all did!! Thank you for sharing such wonderful and uplifting news, it made my day! Butterfly kisses for Tripp!

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  46. Thank you Jesus! I am a Tripp Roth blog stalker. I check this site numerous times a day hoping for updates on this precious little fella. Thank you for taking the time out of your emotionally and physically exhausting day to keep us posted, especially with the photos showing how his little skin is getting so much better. I am so thankful that we worship a Real GOD who hears our prayers and holds us in His loving hands. Have been praying for Tripp's pain to be manageable and for you to have strength and energy to keep up your fight for/with him, and for the medical staff that is involved to be granted wisdom from above as to know what to do to help this little angel. Please let us (stranger from Baton Rouge) know very specific prayer requests so that we can all be praying for your specific needs. May God CONTINUE to bless you each and every single minute.
    Kelley (Baton Rouge)

    **Just wanted to mention LYSINE for fever blisters/herpes simplex. Don't know if Tripp can take that. I am sure your medical people have already mentioned that to you but in the event that they haven't I wanted to let you know. Some people swear by it - especially if you saturate body with it when herpes breakout is first coming on.

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  47. What a joy to read tonight that Tripp has improved. His healing is such a miracle. The difference in his face in the two pictures is astonishing! What a great testament to the power of prayer and faith and how God's blessings are wrought.

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  48. God Bless your medical team!! So glad little man Tripp is doing better..still praying for you all, and this post was so heartwarming and uplifting, especially seeing the video of Tripp hamming it up..love you all!

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  49. So happy he is feeling better...hugs to all of you from Nova Scotia, Canada!

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  50. Sent over from a friends blog. So glad I stopped by too. I said a prayer for your baby and family even before really reading your story. This has touched me beyond anything ever in my life. All these people praying, yes, God can hear us :) and know I will continue to lift you all up in prayer! Much love to your family.

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  51. A friend of mine on FB posted a link to your blog and I've been checking for updates. My heart breaks to see what you and your family have had to endure. On the other hand, it is amazing how God has used you and little Tripp to change people's lives. In a world full of so many bad things, so many people turning away from God, it's refreshing to know that we can all stand together PRAYING and praising God for all that he's done. Your story has definitely changed my heart and made me want to become a better person and a better Christian. God bless your and your family and I continue to pray for all of you.

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  52. Is it aweful that I don't want to come to your blog and read it? Because one of the things that makes me question God the very most is suffering children. And yet, this is what my husband and I have been called to do. . . open our home to suffering children, esp those in the foster care system who wouldn't be loved the way Tripp is. And so, I come here, and I read, and I weep and my heart breaks just a little bit more. . . and yet it grows because to read your words of faith strengthens my own, even despite the lack of understanding WHY. I keep praying for you both. For lessened pain for Tripp, for peace for you. And that I can be half the woman you are once our home is ready and our angel children come to us.

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  53. Praise God that Tripp is on the mend. I am so grateful for the update as I have been praying and thinking of you all daily. Tripp is definitely changing lives and you are too. I am in awe of you and your strength. Kiss that precious angel and know that you are loved and prayed for today.

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  54. The "little knight" is wearing shining armor even thought you can't see it.

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  55. Praying for sweet Tripp from Texas.

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  56. Thank you so much for sharing. I, like Brent who commented above, am a Tripp Roth blog stalker. Between your last 2 posts, I must have checked in a half dozen times a day just hoping to hear that your sweet baby boy was starting to feel better, feel more comfortable. May God bless you, and may he continue to give you the strength to care for Tripp the way you do. I am most often left speechless and humbled in awe of the courage and strength you possess to endure the physical and emotional battles you wake up to each day. Your story continues to remind me my struggles are small ones. Continuing to send you and Tripp are constant prayers!
    (Amber, California)

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  57. Wow I truly believe in the power of prayer and those pics of your precious Tripp really shows the miracle of prayer. I am so glad his little face is doing better and he isn't in as much pain. Is EB an auto-immune disease? I have DB which is an auto-immune that attacks, skin muscles joints. I am praying so hard for your sweet family and sweet Tripp. I am blown away at the prayer vigils for him how amazing.

    Summer

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  58. Praise God for your wonderful update...I've been checking daily and hoping for the best. Much love to all of you from Greensboro, NC.
    Lisa

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  59. Power of prayer is amazing!!! Glad he is feeling a little better. Prayers are still going strong for you guys ((HUGS))

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  60. I am here praying for you and for Tripp. I am so sorry your little baby boy has to go through this, and you alongside him. His little sweet open mouth sleep breaks my heart in a million pieces. My youngest is eight months and was hospitalized at a month old for only eight days, and I know I touched on only one millionth of the pain your heart has endured for your little baby. Please know I am praying for you.

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  61. Praying in Birmingham, Alabama for you and your family . One day at a time...

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  62. It is delightful that he is feeling better. I was praying for a miracle too!

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  63. So glad that Tripp is feeling better. Keeping Tripp and your family in my thoughts and prayers. Sherri

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  64. This is amazing. Thank you sweet Jesus, you are definitely still on the throne.

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  65. Just wanted to say, Good morning...and that you guys are still on our minds and in our hearts.

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  66. Prayers for your precious angel baby! The Lord is using Tripp in ways we can't even imagine!! Bless your family.

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  67. Courtney,

    Tripp is truly a MIRACLE and I am amazed by him each time I see his precious face and read your touching posts! My children and I have been praying for Tripp every day. My 3 yr old daughter told me tonight that she wanted to see Baby Tripp's videos again. So, as we were watching them, she told me, "I just love Baby Tripp." And, I told her that I did, too. My 7 yr old son was walking by and he told me, "I just feel so bad for Tripp and if there was anything I could do to make him better, I would". It brought tears to my eyes that Tripp is having such an impact on SO many people- young and old, all over the world. I always read other's posts and wish I could come up with the wonderful things they write. I totally agree with so many. But, even if I can't come up with the right words, I just want you to know that you are such an amazing mom and your sweet son is such an inspiration. You and he and your family continue to be in our prayers.

    Much love from Southern California,

    The Kale Family

    Rick, Alysha, Arianna, Jarod, Gavin, & Alyvia (& our sweet baby girl ~Laiken~ in Heaven)

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  68. Courtney,
    Please check this out..perhaps it might help Tripp heal those bad areas on his buttocks or face. Still praying hard for your little man, Tripp. He is so blessed to have such a wonderful Mommy like you!


    http://www.youtube.com/watch?v=eXO_ApjKPaI

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  69. Courtney,

    You are an incredible example of strength and handling this all with such grace. I have a rare disease myself that only about 500 people in the U.S. have and Tripp inspires me every day to keep fighting and live fully because really...there is nothing else.

    Much love and many blessings.

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  70. Dear Courtney,
    I found your blog randomly one day a few weeks ago, and I have been thinking about you and your little one every day since. Please know that I pray for you and Tripp every night. I am happy to see that he is feeling better, and will continue to keep him in my prayers.

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