Monday, August 15, 2011

Making progress...

Hello... we are still here!  
I'm not really sure where to begin because it's been so long!  It's been nearly impossible for my mom or me to get too much of one thing done because Tripp is constantly in one of our arms- and usually just switches back and forth between the two of us as he pleases! So I'll start with the progress that he has made since the last blog post.  I think the last time I posted, he was improving after we started the antiviral medication.  Well, things are honestly just about the "same."  His skin still looks great (as in great, I mean his "norm" from before he was so sick), and his mood as been pretty good overall.  He still is not standing up to play.... THOUGH, he did stand up (not by choice) a few times in the past week and actually realized that it wasn't so bad.  It only lasted literally a couple of minutes at a time... but it's definitely progress.  Here is a video from when he did stand up for those few minutes- because OF COURSE, I videoed literally every second of playtime. 

I think someone is going to be a little Tiger Fan:)


But for now, he is spending literally every waking minute in the rocking chair with either my mom or myself rocking him (his MeMe has been out sick for the last two weeks and then out of town this week).  In the past 5-6 weeks, since he got sick, he has gone straight from the bed in the morning- to the rocking chair all day long- and then back to the bed at night.  And just lately (within the past 4-5 days), he has not even wanted to go in his bed.  If it was possible, he would want us to rock him 24/7.  But some point at night, I finally get him to settle for his bed.  

I think his pain is under control for the most part.  I'm coming to the realization that diaper changes and bath time are never going to be pain-free unless we totally knock him out.  And to me, it's just not worth it because he feels so much worse afterwards.  I have not been giving him the extra sedatives anymore for bath time... and he still cries (on and off), but he's MUCH happier and playful afterwards than he was while he was getting all of that medicine.  Once we figured out what was going on with him and the antiviral started helping him, I started to taper down all of his other pain medicines.  And just recently Dr. Defusco decided that she wanted us to try the Methadone again.  This is a different type of pain medicine that works on different pain receptors than the morphine/oxycodone/dilauded.  I don't know much more about it other than it's supposed to be better for him to use "long term."  So we are in the process of trying the Methadone again (at a higher dose than last time) and trying to taper him off of the other pain meds.  Right now, it seems to be helping with the pain, but making him a little more sleepy than I would like.  But we need to give it some time to see if it's going to work for him. 

For the most part, he is back to his rotten, fussy, smiling and hammy little self.  Other than him not getting up to play, he's doing okay.  He's like a king with his 3" memory foam in his pillow and under his butt.  And he knows it, too.  It's hilarious.  He's got us wrapped around every one of his little raw fingers and we are cherishing every minute that we get to spoil the heck out of him.  I wish I could video just how darn cute he is, but he won't let me.  I have to be VERY discreet when I'm taking a picture or a video cause he will fuss and start swinging at us:) 

 Every couple of days, I will notice that he's running a fever (~99-101.7ish).  But for him, finding the source of the fever/infection is close to impossible.  So right now, I think the worst area for him is his mouth.  It seems like it hurts him really bad and has an odor back.  Not to mention the 100 ulcers that you can see when he cries:(  So Dr. D is going to start him back on the Clindamycin because that works the best for his mouth... we think.  

Dr. Defusco is still making house calls- she actually came by yesterday.  We got to visit for a while and talk about all the recent medication changes.  She's wonderful.  I know I've said it a million times... but I could never say it enough.  We are truly blessed to have her.  She's another one of God's small favors:)

So now speaking of wonderful people... I really really don't know where to begin.  I have so many people to thank that have been sending their love and support.  There have been so many people who are just taking it upon themselves to do fundraisers for Tripp.  So many, that I don't even know if I would be able to recognize everyone if I started listing.  There has been so much awareness being spread and so many people are starting to find out about Tripp, EB, and all the other children/adults that are suffering with this disease.  It truly is overwhelming.  I hope everyone knows how incredibly grateful I am.  There are so many people taking time out of their own busy lives to organize fundraisers for Tripp (which no matter the size, are very time-consuming!)  And the cards, e-mails, and gifts that I have received are countless!  I don't possibly know how to thank each one of you (though I am trying... so pretty please be patient with me:)  At the very least, please know how much this all means to me and how much I appreciate all of the love and support that you all have given to my son and myself.  

Please keep the prayers coming.  I know they are working.  
And thank you all again, from the bottom of my heart, for being SO wonderful!





Love,
Photobucket

38 comments:

  1. Loved the video. That is amazing to me he can play those songs on that drum. I cant get over it. Wow. Glad he felt good enough to play a bit.

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  2. What a clever, clever, baby boy Tripp is!! Seriously, Courtney, I love him!! I am so glad you can sneak in some video time because we love to see his cute little face! Prayers and Hugs from this Meme!

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  3. I am so happy to read an update! Tripp is on my mind every day and we are praying for him too.

    Hugs and prayers from our family!

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  4. Yay for improvements... we will never stop praying. Go Tripp, Go!!!

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  5. Love the video!! My daughter who just turned 4 had to watch it again. She said when his bo bos go away she can play with him!! She was so happy!Praying for you and Tripp!!

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  6. So glad Tripp is doing better :)

    Methadone is pretty commonly used for chronic pain, even in kids. What makes it different is that while it does induce tolerance (you need a higher dose the longer you take it) it produces less withdrawal symptoms (if you miss a dose, you are much less likely to become violently ill). It actually has the same mechanism of action as every other opioid (acts on mu opioid receptors) and is 1.5 times as potent as morphine (1 mg methadone should provide as much pain relief as 1.5 mg of morphine).
    Historically it has been used for opioid addiction, because it occupies the same receptor as heroin (or oxycontin, or morphine, etc)...since the site is occupied, the patient cannot get "high" from a drug of abuse. Usually, these patients are dosed such that they have enough methadone to "block" the effect of any drug they want to abuse. But, the dose of methadone is not high enough to produce euphoria.

    Hope that helps! Pain control is so difficult for reasons you have described...too much pain medication, and Tripp is sleepy. Too little, and he's hurting. I'm so glad you have a wonderful health care team and even MORE glad things are looking better for Tripp.

    Lisa (PharmD to be in 2013!)

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  7. Tripp's videos are great, I could watch that sweet boy all day! He is such a gem, precious and rare. I continue to pray for him and you throughout my day. You are so blessed to have fabulous parents and an amazingly generous doctor! Oh Tripp, I pray your new pain regime works well for you.

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  8. I found your blog through FB and I have been praying for you ever since. I pray you can find a way to manage his pain!

    Tripp is an AMAZING drum player! Wow! He has some natural talent! He is so precious and so very lucky to have you as his mommy. You are amazing!

    Much love,
    Blair

    And, of course, GEAUX Tigers!

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  9. oh courtney,
    hang in there my friend. the video is just priceless, so precious.
    what a smart little cookie you have! unbelievable. i enjoyed it so much.
    you and tripp are in my prayers.
    hold on to jesus.

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  10. Great to have an update & yah for all the progress!!! Thinking and praying for Tripp & yourself always. Hope more and more play time comes with each day. Lots of love to you all.

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  11. Tripp has been such an angel to me bringing me back to God. We continue to pray for him everyday, even several times a day. We love you so much baby boy and sweet mommy. Praying for his pain management too. Night, night little man.

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  12. he's such a cute kid!

    http://breatheandhush.blogspot.com/

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  13. He is adorable! Can't believe how good his rhythm is on the drums at just 2 years old!! Especially loved the "Go, LSU!"

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  14. He's so stinkin' cute! I love that he drums in beat to the ABC's! You spoil him all you want :) He is so, so precious!!! xx

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  15. Thank you so much for sharing your little man with us today! I can't wait to show my 3 year old, Grace when she wakes up in the morning. We pray for Tripp every night and have been praying he'd get his drumsticks back into play :) Geaux Tigers & Shoo Fly is our favorite tune to sing. Whenever I hum it during the day, we automatically send up a prayer for Tripp. Stay strong! You and your family are inspirational :)

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  16. The video brought happy tears to my eyes. I couldn't help but clap after his first rendition of Shoo Fly. Thank you for posting it. As always, your son and your family are in our prayers.

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  17. I love the last picture of you and Tripp. You look so happy! :)

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  18. Just in the last few weeks I have been reading your blog. Tripp and your story just touches my heart. I have gotten several blisters on my feet recently and began to think of Tripp. I started crying thinking of the pain he is in. I want your story to reach around the worl and for everyone to know and understand what EB is.
    Your previous post you said you wanted some input on the ideas for EB awareness week. I think you should call the people at The Talk. I am not sure if you have ever seen the show but I think they could bring a much bigger awareness of EB. Holly Robinson Peete is so involved with other mothers whos children have illnesses, as her son is Autistic. I really think if you publicised your story nationally it would open peoples eyes! I am praying for you! Much love, Shannon

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  19. I love watching the videos of Tripp, he so stinkin cute! And what an awesome little drummer. We pray for Tripp everyday and for you and your precious mama. Jesus must be so proud of the wonderful care you are giving to that baby boy!

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  20. Praying for you, glad you found the time to update us, I have been thinking about Tripp and wondering how things were going! He is so smart Love watching him play the drums! What a sweet boy!

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  21. Heavenly Father does hear and answer our prayers, even if it's as small as seeing Tripp play the drums again! It brings joy to my heart to see him smile and play the drums and look like he is enjoying life again. Tripp has amazing musical talent and is one smart boy! You and Tripp are continually in my thoughts and prayers. Keep up the great work Tripp, changing lives one person at a time!

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  22. That video is priceless. I love hearing you sing with him. It amazes me that he can play those songs so well. It is a testament to the power of prayers. I have been and will continue to pray for you every day. I am seriously in LOVE with sweet boy and you. I pray you are keeping your strength and faith. I know you are going through so much and living moment by moment. Hang in there sweet angel.

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  23. Okay, that drumming is AMAZING!! He is so smart!! I have never, ever seen a kid so young do that! Yay Tripp! I had to show Brian the video and his exact words were, "He's a little Justin Bieber!" Too funny!

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  24. I am so glad to see that Tripp is doing a little bit better... and he sure is a talented drummer...

    You, Tripp and your family are constantly on my mind and in my prayers...

    Keep the spirit up... you are not alone...

    All the love from Germany

    Andrea

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  25. Love,love, love the video. What a talented little drummer you have there. I love to see him in action, it always makes me smile.
    Always thinking of you guys and of course praying so hard for your precious son. Please give Tripp a big hug for me. Love you guys. Love and Peace Leah's Nana

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  26. How much cuter can he get!? Oh my!!! I love how he loves music and rhythm. Despite everything, he has music in his heart. Such. beauty. . .

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  27. He is so stinking cute! He amazes me with his drumming abilities. I have never seen a child that age do that! We continue to think about and pray for all of you! My 9 month old loves to watch video's of Tripp so I can't wait to show her. Thank you for updating us

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  28. My goodness. He is so smart. Such a beautiful and funny baby boy. I pray everyday that God will heal him but I'm glad he's doing great for the most part. Keep fighting Tripp you are loved by many many people.

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  29. What a cutie. I am so happy to see him playing even if it is for a short time. He's never far from my mind these days. I will continue to pray for him and for you. God bless you and your family for the strength, faith and patience you have shown the world.

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  30. I absolutely LOVE that video!!!! He is sooo smart, and soooo cute!! He is truly amazing, but you already know that :)

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  31. He is quite possibly one of the smartest two year olds I have ever seen, and trust me I have seen plenty of two year olds I worked at a daycare for 4 years and I have a 16 month old myself. He is such a smart little boy and so musically inclined. So beautiful. Btw he is in my prayers every night along with you, your husband and your entire family. God Bless yall!

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  32. Wow! He is quite the talented little drummer! He keeps great time! Its amazing!

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  33. Love the video! He is SO SMART! :-)

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  34. WOW!! I can't believe he can drum the beats like that just from you asking him too!! That is amazing! He is so precious! We continue to pray for Tripp! Keep going baby boy!!

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  35. Tripp is incredible. Love that video!

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  36. you have an amazing little boy this is my first post but I just started following your blog a month ago. It brings me so much joy to see how he plays the tune to all the songs on his drum. Brings tears to my eyes to see what you and your family has to go through but yall have done an amazing job and have a perfect little boy in my eyes you are an amazing mom and I can see he adores every minute of you.Keep up the good work and God bless Tripp and the family wish there was so much more I could do for him but just know we are all praying for you all everyday in Texas.

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  37. Tripp is just amazing! And so are you. I am forever challenged and inspired by your life. I have been reading about and praying for Tripp and your family for awhile now. Blessings on you today.

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  38. You are amazing......I just came across your blog on accident and decided to read it and I was completely blown away by your story....It takes a very special mother to do what you have done.....I was really blown away by the ignorance of the people that made those comments to you and you are right until they walk in your shoes they have no idea what they would do....You are doing a great job taking care of your son....

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