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!


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