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...