Hello Hello...

It is 12:37am and I am just starting to type.  I really should be sleeping but my 5 hour energy drinks tend to kick in around this time.  I may possibly start drinking them around this time, that way I'm energized and ready to go at about noon the next day when I actually need to be:)

I first want to send out a HUGE thank you... 

#1: To Babble.com for hosting the "Mominees who are changing your world" contest this month.

#2: Again, to Melissa Pline, for nominating me for this award. 

and #3: To everyone who took time to vote for me!

I won in the Inspirational category and won $5,000 donated to the charity of my choice! 

I chose DebRA, as I am very grateful for the help they have given us directly after Tripp was born. 

To win this contest and see the people who voted for me and left comments on my nomination was so humbling.  I think this is the biggest honor I've ever received.  

I am truly blessed and I thank you all for making this possible. 

You can view my win HERE.  

Things have been just plain rough around here.  Today made 4 days straight that Tripp hasn't stood up to play.  He just rocks the entire day, occasionally smiling and playing a little in the rocker.  But mostly not even wanting to move much.  He's back to running his low grade fevers and pretty much just feels plain YUCK about 95% of the day.  He is currently on 2 antibiotics: one that I stopped today due to MASSIVE diarrhea, even with probiotics.  

And this is the latest on the G-CSF: The doctor who Dr. D and I are communicating with in Tennessee wanted us to get some baseline labs (blood work) before we could talk about starting this drug.  So we did... and (I think I mentioned this in a previous post) they were a bit out of whack.  His white blood cells were elevated and his platelets were elevated- which for Tripp, is what we are used to.  But, understandably, when a hematologist sees these labs, it's a little bit different.  He said that he couldn't start Tripp on the G-CSF with his blood counts like they were because he would probably have a stroke... (which is actually something that is possible on a daily basis with Tripp, being that his platelets stay so elevated).  But I totally understand his point of view.  So he told us that if we can get rid of the infection Tripp has (hmmm... which one?) that he would start him on the drug.  

Well... 

This now goes back to everything I said I was not going to do.  

The prying and the poking.  

BUT... I also don't think that I will have a clear conscience if I don't try this drug on him at least once, just to see what it does.  If it can give him a little relief anywhere- his mouth, his sores, his breathing... it will be worth it.  

So, right now we started him on 2 oral antibiotics (we are trying these one more time before we decide on any prying and poking).  One that is for his mouth/ears- in case he has an infection brewing there.  And the other one is the only one left that we think still treats the type of pseudomonas that is covering his body.  But the antibiotic for his mouth/ears is giving him diarrhea.  BAD.  So I stopped it today.  Diarrhea + bandages + an "already raw to begin with" butt = a nightmare.  

After we finish this antibiotic, then we will re-draw his blood work and see if his counts dropped then go from there.  Please pray that they drop so we can have the option of trying the G-CSF.  

His breathing has been just a little bit better.  He's been at the highest dose of oral steroids, on new and stronger nebulized steroids, and on continuous oxygen for about 5 days now.  I've had to start sedating him again for his baths because he gets so upset that he can't breathe.  When Dr. Rodriguez came to the house about a week ago, she looked down his trach with her scope and said that his airway was floppy and that every time that he went to breathe "out," his airway was collapsing.  Lovely, right?  So she ordered him a bigger and longer trach, hoping that we can "bypass" the floppy part of the airway.  Well, the trach came in today- I texted her- and she is coming in the morning to help me put it in (she's afraid it may be hard to get it past the "floppy" part) and then scope him again and make sure it's the right length.  Talk about service, right?  I am 110% positive that God hand-picked Tripp's doctors.  They are absolutely amazing and I could never say enough wonderful things about them.  Never once have I had to ask Dr. Rodriguez or Dr. Defusco to come to the house- they offer every time.  They are angels. 

So since Dr. R is coming in the morning, I did something horrible and skipped bath tonight! 

I know... this does NOT happen often, but mom and I decided that he was just feeling horrible, having way too much diarrhea, and if we were doing a trach change in the morning already, then we might as well just wait and do everything in the AM.  But as I'm laying next to my little angel right now, I'm thinking it wasn't the smartest idea because he's itching so bad and so restless in his sleep.  This proves to me that every other day is the only option for baths.  My poor bub:(

Guess what?? 

It's that time again... COLD AND FLU SEASON! 

And I know you all know that kids haven't been allowed in this house in over a year now, but I'm going to ask again that even if you are AROUND a child, adult, animal, or ANYTHING that even looks like it might have a cold or is sick, that you pretty please stay away:)  

I love you... but I love Tripp just a tad bit more. 

And right now, a simple cold could kill him.  Literally. 

And he's #1 priority, of course.  

Why?  

Because "Who's the cutest baby boy in the world??"

TRIPP IS! 

Duh :)

Love,

Dear Bubba

I used to treasure my life,

Long before there was you.

I was selfish and clueless.

And invincible too.

I carried you in my belly,

While I fed my big behind.

With thoughts of an unhealthy baby,

Not once crossing my mind.

I was oblivious to the real world,

But my dreams were coming true. 

I was having a child of my own,

Anticipating days of "me and you."

You might think that the words "EB"

Hit me like a ton a bricks.

But it took Mommy a long time,

To realize this wasn't something I could fix. 

So here I am two years later,

Staring at your beautiful, raw face. 

Praying to God so desperately,

To let me take your place. 

You see, my Dear Bubba... 

I still treasure my life- but at a different length. 

Because now YOU are the center,

My heart, my soul, my strength.

I would go before you. 

I promise you I would. 

I'd give up everything here, 

If it meant that I could. 

I would take all of your pain. 

And put aside my dismay.

I would give up my life in a second, 

If it meant that you could stay. 

Free of sores, bandages and pain,

Just like a healthy boy.

If you could talk, sing, run or jump,

And live a life you could enjoy.

You might think I'm just saying this,

Because that's what a "mommy" would do.

But I mean every single word-

I'd give my life for you. 

"He won't live to be a year."

Those words cut like knives.

But little did they know...

You were put here to touch lives.

Oh, Bubba, it's so unfair. 

And everyone thinks so, too. 

It's a hard thing to comprehend, 

Why all of this suffering was given to you. 

And as the months have passed, 

I realize more and more. 

Why you were given this cross,

And why you're impossible to ignore.

Only you, Bub, could do it.

Your will to fight is like no other.

No one could possibly take your place,

Not even me, your mother. 

So even if I make bargains with God,

And beg and cry and plead.

I know He'll never let us trade. 

For He knew your role, indeed.

There's no doubt that you're a saint. 

Free of sin, innocent, and pure.

And this, Dear Bubba, I promise you...

For EB- we'll find a cure. 

I don't know how long it will take, 

Or if it will be too late. 

I do know one thing, though. 

You don't deserve to wait. 

So here is my prayer, God. 

I know, right? Not again?

"Give him peace here or peace in Heaven, 

My Dear Bubba."   

Amen. 

-Written by Mommy

9/24/11

I'm just a little bit...

FRUSTRATED. 

It feels as if we are at a stand still... and all I want is just a little relief for my baby. 

I'll start by very briefly explaining the new drug I mentioned in my last post.  It's called G-CSF (that's actually the classification).  It is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing a certain therapy that will lower your white blood cell counts.  This medication is used to prevent infection and fevers caused by chemotherapy.  I know of it as being used before the Bone Marrow Transplants in EB kids.  If I understand correctly, it's used about 5 days prior to starting the transplant.  Some EB patients that took this prior to their transplants started feeling better within the next day- their mouth healing, skin clearing up, etc.  But then the transplant began after the 5 days...

Now there is no data on this drug being used just to help stimulate "healing" in the mouth, esophagus, or skin.  It's never been used in this way before.  Now most of you know that some of the children that made it through the transplants are doing okay, but some of them are worse than before the transplants.  Most every one is different.  One of the transplant patients started the G-CSF strictly to "see what it would do," and had some good results within a few days, but then had to stop it due to a secondary infection.  

And if you know me... you know that I want this drug like yesterday.  I mean, what do we have to lose, right?  My baby's time clock is ticking...

So another super EB mommy got me in touch with this doctor and I practically begged him to let us try it on Tripp.  He was so nice.  I felt like he really cared and he was really willing to help us.  The problem is that this is brand new and no one knows short term or long term side effects of using this drug in this way.  AND he doesn't think the drug will do anything as long as Tripp is on steroids (which he's been on for about 2 years now).  And the steroids are difficult to taper off when you've been on them for so long.  But he told us that if I could do a viral swab in his mouth (and make sure the herpes virus wasn't lingering around in there again), try and taper his steroids down to about 2 mls, and draw some baseline labs on him... then we could talk about it.  So between me, Dr. Defusco, and our SUPER great and wonderful home health nurse, Kati Corso- we got the swab done and the labs drawn.  And I had already begun tapering his steroids.  

Viral swabs were negative (I guess that's one good thing), but his breathing starting getting wheezing when I started tapering his steroids, and his blood work was all over the place.  Electrolytes were up and down and crazy numbers... and he was more anemic than any blood work has shown before.  Go figure.  My excitement turned to disappointment really fast.  

Dr. D thinks I may have tapered his steroids too fast.  Which I probably did in the excitement of actually being able to try a drug that could make him feel a little better.  But doing that is bad- and it was a wake up call for both of us when we saw his labs.  I didn't think I tapered too fast.  I went down about a ml a day and then stayed at 3 mls for 2 days and then went to 2 mls.  Which is something that I actually do about once every 2 months (but I usually stay at around 3 mls).  I don't know... we aren't actually sure what made his blood work so out of whack, but we are going to try and draw new labs tomorrow to make sure these were accurate.  Which means more poking on sweet Tripp... ugh. 

SO... this of course means that this drug gets put on hold until we can get him stable enough to be able to try it (I'm assuming).  It's just frustrating.  This drug is no where near a "cure," I'm very aware... but if it can just help even his mouth to feel a little bit better (his mouth is just horrible right now)... I'm going to fight for it.  Like an angry momma tiger.  Grrr...

And what's my next frustration, you might ask? :)

Bath time.

Like I said in my previous post, I've been having to heavily sedate my little bubba at bath time.  I hate this.  The sedative I use drops his blood pressure and he trembles and his little teeth chatter.  And as yucky as I bet it makes him feel, it usually only lasts for about half of the dressing change.  Usually either the first half or the last half... never the whole time.  And then lately, after he's finished he's been wanting to play because I guess he feels better afterwards... but he's to sedated to really even stand up.  And that just makes me feel horrible because usually after bath was his most favorite time to play because he felt so good.

SO.

We tried bath tonight with no sedative.  Just the pain medicine and the anxiety medicine (not for mommy, for Tripp:).  He tried to flip over about 3 times when I first laid him down, but then we were able to talk him out of it and calm him down enough to let us unbandage him.  And bath was actually okay.  It was almost back to how it was before he was really sick.  He still cried, of course, but not to the point where it was unbearable.  

And then, of course, when we finished- he felt horrible and had no interest in playing.  

Really? 

I just don't know what the answer is anymore.  Everything is trial and error, but it's like nothing ever works the same way twice.  His poor little body must be so messed up from so many different medicines.  It's probably just plain confused.  I wish we could do to Tripp what my grandpa used to say about himself... "Why don't y'all just take me off all this medicine and see what happens?

That's not a bad idea, Paw Paw.... I might try it. 

On a brighter note, we did receive Tripp's song and an autographed picture from the one and only Elmo:)

I just made a simple little iMovie with two pictures because that's the only way I knew how to share the audio file that was sent.  

He sent us a whole CD of songs, but this version of "Tripp's world" was the only one I was told I could share! 

And what Elmo says, goes!:)

Tripp loves hearing his name in the song. 

Much love to you, Elmo... much love. 

I'll keep you guys posted on what happens with the G-CSF.  I'm hopeful.  I'm just not getting too excited about it because I know it's only a temporary fix if (any fix at all).  But like I said, if it can give this baby just a little bit of relief, it's worth it.  

I'm so emotionally exhausted seeing him in pain... being the one causing him the pain by doing what I have to do to keep him as clean and healthy as possible.  It's heart wrenching.  It really is. 

But moments like this are what keep me going...

This is occasionally what happens when I say, "Smile for Nanny!"

I love this little ham.

Love,

I'd love to think of a title but it's late and I've got nothing...

I've been trying to type a post for the past few days now and every time I start, I just can't think of what to say.  

It's so easy for us to focus on the bad in the world.  But there are SO many good people in this world.  I am now experiencing this every single day.  There would be no possible way to even begin to thank every one of you who has reached out to us.   

I am in awe at the support that we are getting and at the amount of people who are following our journey.  I just can't get over the fact that my little boy who has never spoken a single word, has reached out and touched so many lives.  I don't think I will ever have the right words to be able to express my appreciation to all of the people who have been there for us- AND who are still here for us, still supporting us, and still sharing our story and helping me to spread awareness about EB every single day.   

So with all of this, the lingering question in my head has been, "What do you want from me, God?"  Because I know this is happening for a reason.  I know we have this tremendous amount of support and love from perfect strangers for a reason.  What's the message?  There are over 1300 followers of this blog.  Tripp and I have maxed out 5,000 friends on Facebook and I still receive friend requests every single day.  The "Prayers for Tripp" Facebook page that a friend created has over 26,000 people that "like" it.  Another amazing mom nominated ME on babble.com for the "Top 100 Moms that are changing the world" contest, and I am currently in first place.  I cannot believe it. 

AND GET THIS... 

ELMO (yes-THE ELMO- from Sesame Street)'s  personal assistant, Kim, emailed me today.  She said that "Elmo," (Kevin Clash) heard that Tripp loves him... and wanted to know Tripp's favorite things because he was going to write him a song.  

ARE YOU SERIOUS?  

Elmo is going to write Tripp his own personal song??

This may not excite some of you, but to me, this is like bigger than Oprah!!  

This is ELMO- THE Elmo. 

That makes me love Elmo more than ever before.  

And it makes listening to him ALL. DAY. LONG. a whole lot better.  

That is just plain awesome and so absolutely THOUGHTFUL!  Wow. 

People continue to AMAZE me.

Elmo, YOU ARE THE MAN.

Never in a million years or in my wildest dreams could I have imagined any of this. 

 It is the most humbling experience that I will ever go through. 

What is God trying to tell me?  What does he want me to share with each and every one of you who are supporting us and loving us?  I know that Tripp has brought us together in prayer.  I know he has taught some people (like me) the meaning of life, love, family, etc.  I know that he has some of you hugging your babies tighter, praying at night, or maybe saying an extra little prayer of gratitude during the day instead of getting frustrated.  But are we be called for something bigger?  What are we here for?  What is our purpose?  

But I don't want any of you to take me the wrong way... like I'm just "walking the walk" and "talking the talk" over here.  I'm writing this mostly for MYSELF.  I know my life needs to change.  I know that even though I DO devote my life to my son everyday, that I do not devote my life to God in the way that I should.  I don't pray as much as I should.  I let irrelevant things get to me in a way that they can ruin my entire day.  I still judge people.  I still hold grudges.  I still get angry...

No one is perfect.  

I so often wonder what will come out of this?  What will come out of all of this support and all of these amazing people coming together in prayer?  What amazes me is that I hear from people of so many different religions, with so many different views and beliefs.  People from different states and sometimes different countries.  Yet, NEVER ONCE (minus one lady about a year ago) have I received a single negative comment from one single person.  That's just amazing to me.  And some of you might be thinking, "Geez, who would leave a nasty comment to someone with a sick baby?"  But this IS a personal blog- so I do write about my own opinions and my own beliefs... so I personally think that it IS amazing that I get nothing but a complete outpouring of POSITIVE support and so much encouragement.  

And to me, that is just touching on so many levels.  

I feel like a lot of you are my family.  Some of your faces I have never even seen, but have seen your name over and over in my blog comments, e-mails, or Facebook messages... that I honestly feel like I know you.  I feel like you're a part of Tripp... and a part of our journey.  And you are.  Where would I be without my support system? (And by support system, I mean all of you AND ESPECIALLY my angel of a mother who never gets enough credit for what she does for Tripp and me).  Grammy= "Mother/Grandmother of the century" in my book!  Without her and all of you, I'd probably be curled up in a corner somewhere feeling sorry for myself saying, "Oh God, why ME?" and "I can't do this another day!"  But it's not like that.  I admit that I feel tired, frustrated, and just plain angry sometimes... but I try my very hardest not to let that show.  I have so much support and so many people encouraging me each day.  I knew Tripp was special from day one.  Just being in his presence gives me a sense of peace that I could never explain.  And that has made all of the difference in the world. 

Tripp is stable.  He's not even close to his "normal" self from before he got sick.  But he is still able to sometimes feel well enough to stand and drum a little.  He's averaging about 1-3 times a day that he will stand up and play.  Each time usually lasting around 5-15 minutes.  His mouth is still horrible.  We did wound cultures last week and I got the results back today and SURPRISE- there's psuedomonas everywhere.  Could've guessed that one.  Sensitive to only one antibiotic... that I don't want to use unless we absolutely HAVE to.  We actually just got off of it about a week and a half ago.  This week we are going to test him again for the "herpes" virus (like a fever blister) and make sure it's not in his mouth.  

A few of you have mentioned in comments about the GCSF that Sam (who was the first child to undergo the BMT in Minnesota) is currently taking.  I have been speaking with Sam's mom, Marybeth, with Sam's doctor in Nashville, and with Dr. Defusco and we are looking into it.  I will let you guys know if we decide on anything further.  I don't want to go into any details yet, but I AM, of course, VERY interested.  And I will definitely keep you all posted.

I'm not sure if this post even made sense.  It seems like a lot of rambling thoughts.  But I'll leave with this... 

"For whoever is ashamed of me and of my words in this adulterous and sinful generation, of him will the Son of Man also be ashamed when he comes in the glory of his Father with the holy angels."

-Mark 8:38

Are we ashamed?  I would love to think that I'm not... but that's really not realistic.

I don't want to be ashamed.

So what do I do about it?

I want to share with you this post from my dear Patrice.  

I think she's having the same thoughts going through her head about what we ALL can do to make a difference.  Because if you REALLY stop and think about it... 

We only have ONE goal in this "temporary" life. 

And that is to get to Heaven.

And I don't know about you, but I really want to get there... 

Because I KNOW that's where my little man will be.

Probably holding Elmo, a duck or a cow in one hand... and holding Jesus' hand with the other. 

Love,

The definition of a HERO.

I have to introduce you to someone. 

But first, I want to start by giving you a brief summary of 

"a day in Tripp's life."  

Tripp doesn't know a day without pain.  He wakes up in pain, he goes to bed in pain.  He starts the day with a painful diaper change, while he cries so hard that he struggles to breathe and has to be suctioned usually more than once during one diaper change.  

He then goes straight into the rocking chair into our arms (with us knowing that we better not even stop to grab something off of the table or we are getting "fussed").  

He rocks the entire day, with maybe a few minutes of playtime here or there a couple of times a day (if we are lucky).  He has lost his eyesight due to blisters that have formed and scarred over his eyeballs. 

 He never gets to do the things that normal children can do because he can't speak, see, walk, or even go outside. 

He has to have a bath and dressing change every other day that causes him extreme pain and anxiety.  He knows this is coming and usually dreads it for half of the day worrying about when we are going to pick him up and undress him.  

If it's humid outside, his trach is usually better, but we do a lot of suctioning.  If its dry out, his trach stays dry and he has trouble breathing even with his humidifier on. 

He eats by me shoving food into his stomach with a tube.  He wants to eat by mouth, and will try occasionally, but usually takes one bite and decides that it hurts so much that he doesn't want another.  

He has over 20 teeth that he's had for over 2 years that have never once been brushed.  

He has sores all over his entire mouth and tongue from his teeth rubbing (just like if his skin is rubbed).  

OH, and his body is covered in raw, deep wounds that never heal and he has to stay wrapped in thick bandages every second of the day, with pounds of Aquaphor underneath those "already suffocating" dressings.  

NOW... 

It's one thing to have this happen to your child without you choosing or knowing it.  

For me, of course, there was no other option than to devote my entire life to my baby- just like most mother's that I know would do.  

BUT... 

What if you knew all of these things that I just mentioned to you, and yet you STILL CHOSE to step up to the plate and devote your life to a child with this disease (who is not even your own flesh and blood)?  Now THAT to me, my friends, would be the definition of a HERO. 

Meet my Hero, Caroline:

Caroline is 20 years old... Yes, only 20 years old...

And she has volunteered with babies and children in Russia, South Africa, Swaziland, Lesotho, Romania, Thailand, and China since 2008.  She spent the last year volunteering in China and Romania, as well as advocating for waiting children in China, and children in need of medical visas around the world.  

Currently, she is fostering a beautiful little boy named Raul, who also has EB.

Meet Raul:

Caroline tells his story on her blog: "Raul was born in Barlad, Romania, on October 19th 2009. He was born with Epidermolysis Bullosa, as was his sister who passed away at one month old.  He lived in the hospital for four months, when he was then trasfered to Tutova Clinic. I met Raul the day he arrived in Tutova, and immediately fell in love. At the time he was in very poor condition, and his condition was not widely known in the area. I was in contact with doctors in the United States during my time in Romania to help find ways to improve his quality of life. Once home I began working on getting Raul a medical visa to come to the U.S. for a short time to receive more expansive testing and wound care. Finally in early August I got the email I was waiting for, and Raul was accepted to Massachusetts General Hospital and Colorado Children's Hospital for free medical care!"

Caroline is taking care of this beautiful little boy mostly by herself and with the help of her courageous and supportive parents.  She is devoting her life to keeping him alive and getting him the best care possible.  She is by his side every minute of the day, never leaving the hospital... not because she HAS to, but because she WANTS to.  Caroline is from Massachusetts, but her and Raul are currently in Denver, Colorado, where Raul is receiving free medical care.  

Last week, he had a feeding tube placed because he was unable to eat without being in pain and without his mouth bleeding.  

He is also receiving IV antibiotics for an infection that was in his bloodstream.  

And just like every other EB child that I "know," he seems like he has the best disposition.  Smiling, playful, and happy.  

How unfair and cruel is this disease?  

Raul's sweet little hand...

I would love to be able to say (before Tripp was born) that I would have fostered and cared for an EB child (or any special needs child) just because it was the "right" thing to do.  But I can honestly say that I think I was way too selfish.  Thank God that there are people in this world who put their own selfish needs and wants aside and CHOOSE to cater to the needs of the less fortunate.

Because it's one thing to devote your life to YOUR child, but it's just downright admirable to devote your life to a child who is not your own.  

So, please, take a minute and hop over to Caroline's blog

  HERE

and show her some support. 

And please keep her and Raul in your prayers.  

She's is giving a VOICE to one more child who isn't able to have a voice of his own. 

Much, much respect and love to you, Caroline. 

Love,