Drummer Boy

“For whoever wants to save his life will lose it, but whoever loses his life for me will save it. What good is it for a man to gain the whole world, and yet lose or forfeit his very self?” 

-Luke 9:24-25

This Sunday's gospel reading was about "taking up your cross."  And of course, I try to relate every reading and every scripture to Tripp's situation.  But this one was easy.  Tripp is carrying his cross every second of every day.  He is TWO years old and he's been through more pain in his life than most of us combined, yet he carries his cross with such grace and with a smile on his face.  I realize that he gets his strength from God, but some days it's just overwhelming to see.  Ok, so my point?  Isn't innocence just beautiful?  Even in this situation... where Tripp is too small to even know to trust the Lord.  When we all are handed our crosses (and EVERYONE has a cross, no matter how big or how small), don't we all wish we could carry them with the innocence of a child?  Without complaining, without wanting vengence, without humiliation?  Don't we wish that we could just trust in God that He knows what is best.  Instead of praying and trusting, do we throw blame and finger-point?  I know I'm guilty a lot of times.  Because it's hard.  I wish I had the strength and innocence of my little man... trusting, smiling, and fighting through the pain.  Because as we ALL are having to work hard for our seat next to God and work on carrying our crosses like He wants us to, I am certain Tripp's seat already has it's nameplate engraved as "Drummer Boy." 

So it's about time for an update, right? 

Things have been about the same over here lately.  Last week we had a little scare with one of the sores on Tripp's ankle.  It was red and draining and his foot started to swell, but we started him on an antibiotic  (the only one we have left that's sensitive to the pseudomonas that he's covered in) and things are looking a little better.  Still not 100% though.  It's still pretty painful for him.  

Last night was a bath night and I gave him his pain medicine and at about 9pm, I tried laying him down on the table and when I did, he pulled up and turned completely over on his stomach (first time he's done this on the bath table).  WE ARE IN TROUBLE.  So I guess we've been a little spoiled at bath time because he's been so good and so still for us.  But he's obviously had ENOUGH.  If he can help it, no more bath time for him.  SO, since there would be no way that we could "handle" him rolling over like that while he was naked or I would tear his skin... I had to put him back on the rocker, give him a sedative (which I hate), and wait for it to kick in before we started.  So at about 9:30, we tried again and he was knocked out.  He let us undress/unbandage him without crying at all, but then after we got him out of the tub and back on the table, he cried the entire time.  It was terrible.  He cries if he's sedated and he cries if he's not.  But at least being sedated, he can't roll over like he did.  

Playtime has still been about once or twice a day that he will stand.  And the rest of the day is spent rocking with us in the rocker.  Each time he stands is just a few minutes- but you know me... I catch all of those minutes on video:) 

So here they are... my baby's mad drumming skills!

I thought I'd never see my little angel drumming again.  

He's such a little blessing.

And as always, thank you all for the continued outpour of love and support you've given us. 

It carries us through each and every day.

Love,

Do Re Mi, LSU, and Shoo-Fly Concert

Just HAD to share this new video from last night.  

I took the chance of standing him up by the couch just to "see" if he would play for a minute and so glad I did.  

I don't think it's possible to love this little rotten boy any more. 

(Please excuse the awful singing, as always:)

And yes, he is in a pink shirt.  You know it's cute...

Love,

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,

Random thoughts and videos...

This will be a pretty random post, because I have a few things to write about and they are all kind of unrelated.  But I haven't blogged "just because" in a while, so I figured it's overdue.  Even though it is 11:00 at night and it would really behoove me (my nursing instructor will be so proud) to get some sleep- since that hasn't been happening too often.  O well, I figure one day I'll be able to sleep.  It's overrated, anyway. 

So, I know it's still far away, but I've been trying to come up with some ideas of what I can do for EB Awareness Week.  It's not until the end of October (the 25th-31st)- but I want to do something special.  Something that really brings attention to these babies who endure so much pain every minute of their lives.  I was staring at my little man today (like I do most every day) and just thinking about HOW much pain he is really in.  It's unfathomable.  And not just the pain- but that fact that he has lost his eyesight, he can't speak, can't eat, has 20 teeth that he can't brush, etc, etc, etc... I could go on and on.  

I'll say it again- these children deserve a voice.  And just because this disease is SO rare, doesn't mean that it shouldn't be well-known.  I honestly think it's the most cruel disease that I've ever heard of. 

So, as always, I want your input, thoughts, ideas, suggestions on what I should do for this week.  That way I'll have plenty of time to work up a great week of "EB Awareness."  It's going to be all about what YOU guys want to know and learn- so please, if you have any ideas, leave them in a comment or e-mail!

So I want to give credit where credit is due, and I can tell you that my sweet "saint of a Momma" doesn't get enough credit.  She has completely picked up the slack and has been by my side, helping me to raise my son 24/7.  She has never complained once about her life being flipped upside down.  It is very safe to say that neither Tripp nor myself would have survived these past 2 years if it weren't for my mom.  The main words that I hear daily from her mouth are "what can I do to help you?"  And yes, I realize that she would not have it any other way than me to be here where I have the help that I need... but it's still a sacrifice for her.  She's already raised her children- I'm sure she didn't plan on raising mine, too.  And also for my sweet Daddy who never complains when I steal his wife day and night, or when nothing is cooked for dinner, or his clothes didn't make it to the washer because we were washing 100 batches of Tripp's blankets...  I just feel like these sacrifices that my parents have made for Tripp and me might sometimes get overlooked, especially by me.  So I want to acknowledge them.  And I'll probably get a "why in the world did you put that in your blog?" from both of them... but I don't care.  They deserve for everyone to know what they are doing for us.  I hope they both know that I think they are the best parents in the enitre world :)

On to the next... There has been a good number of people asking me if I know about the bone marrow transplants going on in Minnesota.  I definitely do.  I have followed many of the children's stories who have gone through the transplant.  I know this is a difficult thing to understand if you aren't familiar with EB.  Most of the transplants that are being done are on the children with Dystrophic EB.  Tripp has Junctional EB.  The majority of the children that do well with the transplant are usually older children.  The children that I have watched through the transplants were under the age of 2, and the risks far outweigh the outcome. Tripp is not at a point where he would even be healthy enough to go through with the transplant.  It is a very brutal process.  I know that the brilliant and amazing doctors there in Minnesota are working hard to perfect these transplants and to help these kids.  And maybe one day this will be in our future.  But it's not today.  

And last but not least, I was looking through the videos on my phone and found some that I had taken within the past few months, but had never posted.  They are pretty short, but made me smile.  I hope they make you smile, too!  

I never realized how much I loved watching him stand to play until now that he doesn't play anymore :(

Love,