"EB"ing a Mommy

2 months feels like 2 years...

2012-03-14T19:18:00.000-05:00

Missing my baby boy with my whole heart, especially on this day that makes 2 months since he left my arms.

Memories like these I will cherish for the rest of my life.

So thankful for my faith, that is carrying me through each day.

Reassuring me that my sweet boy is safe, healthy and happy in the arms of Jesus.

Because if he can't be here in my arms, there's no where else I'd rather him be...

Love,

A very humbling couple of weeks.

2012-03-05T17:36:00.001-06:00

To say I long to hold my baby boy in my arms again would be a drastic understatement.

I apologize for not writing lately. I really do plan on keeping up this blog... I guess I just needed a little break to gather my thoughts. Though I'm not sure my thoughts are gathered quite yet, but I'm going to try.

There has been A LOT going on, so this may end up being a rather long post. I guess I'll start with how I am doing... except for the fact that I really have no idea how I am doing. I know I'm keeping really busy. Going to the gym (sometimes even two-a-days), spending time with my family and with Stephen and his family. Those are the things that make me happy right now. I've come to realize that no matter what I say or how I say it, I could NEVER explain to you guys what I'm feeling. And I know most of you understand that.

Two years and almost 10 months ago, I gave birth to my first baby- and from that SECOND on, for 2 years and exactly 8 months, I devoted every waking (and sometimes even non-waking) hour to taking care of him, loving him, and keeping him alive. And now for almost 2 months, my arms have been empty. It's the worst feeling that I will ever have- I'm positive of that. I hate saying that "I miss him," because that just doesn't seem to do it justice. There are no words that could ever express how much I miss him and how much I want him back in my arms. As tired and exhausted as I was, I would trade this life that I have now for my life back with him in a heartbeat. HE was my life. And I'm having to learn how to live my life without him now- not by choice, but because I know that God's plan is much bigger than the plan that I had.

And God's plan is still happening... through Tripp and through some pretty incredible, generous and caring people. First of all, I want to say that I DO receive all of your letters and e-mails. PLEASE forgive me if I haven't thanked you personally, but it's been pretty impossible for me to keep up. I'm trying to send out thank you cards, but I'm a little behind and a tad bit overwhelmed. But I want you all to know how VERY much it means to me when I receive a sweet card in the mail, or when I read your kind words through an e-mail. I promise that I receive and READ each and EVERY one. They honestly keep me going. So thank you all- from the bottom of my heart.

Two weekends ago, there was a Softball tournament that was put together here in my hometown in honor of Tripp. It started with an extremely kind family- David and Jessica Thompson- and David's softball team, who wanted to dedicate their entire "season" to Tripp. They named their team "Tripp's Troops." They had jerseys made and then began to rally teams to put together a tournament. Well, it turned out that it was much bigger than they expected. There ended up being 56 softball teams (Men's teams and co-ed teams) from across the state. The whole town participated- our local Recreation park and director, Mr. Bill Wheat, donated the park and also worked hard to gather some incredible local bands and activities for the kids. Tripp's Troops also put together a silent auction where people from the town donated things and services to be bid on. And they also had a huge amount of men and women who volunteered their time to cook, clean, set-up and work this big event! The turnout was amazing. It was incredible to see so many people out there in support of Tripp and our families. I am so humbled that a family that we didn't even know would go out of their way to do such an incredible thing for Tripp, our family, and for EB.

I am so grateful for the support.

Thank you SO much to everyone who was involved.

AND then, this past weekend, we had another amazing event happen.

Our local news anchor, and now friend:), Scott Walker, from WDSU Channel 6, decided about 2 months that he was going to not only run the Rock-N-Roll Half Marathon on March 4, but he was going to dedicate it to Tripp. He decided that while he was training for the half-marathon, he was also going to raise money for DebRa.org in Tripp's honor. He then created a website- www.runningfortripp.com where he has been tracking the progress and keeping people updated.

Then, people from the community wanted to get on board as well. So, local friends decided that they, too, wanted to run for Tripp and also help Scott raise money. They created t-shirts with "Team Tripp" on them and spread the word through Facebook. It was so emotional for me to see so many people wearing red and honoring my sweet boy in such an amazing way.

There was also someone really special who wanted to get in on the action- my Daddy, Tripp's Papa:) My dad has been running here and there- he runs 5Ks pretty often and for the past 3 years, he has run the Crescent City Classic, which is a 10K. That's the furthest he had ran- before he decided to also run the half-marathon for Tripp. He said he would just be happy if he crossed the finish line, but he sure surprised us. My dad ran the whole 13.1 miles, without stopping. I was completely choked up when I watched him run through the finish line, smiling and pointing to his "Team Tripp" shirt. I was so incredibly proud of him. So was my mom, as tears ran down her face. And I think even Stephen got choked up a little:) It was a pretty great experience.

Scott writes about this weekend and his feelings about it HERE, on his blog. It made me cry this morning.

I am so proud of him- for taking this on, and for totally ROCKING it.

I got to meet Scott's amazing wife, Jennifer, and the rest of his family this weekend, as well. They are such wonderful people.

I will never forget yesterday and the support we received as long as I live.

Scott first set his goal at $5,000, then $10,000, then 20, then 30... There was over 500 donations online plus the donations given by mail, phone and in person.

As of today, he has raised a whopping $42,481 for DebRa.

That is HUGE. This whole event was HUGE.

If you missed out on getting to donate to DebRA in this way and towards this event, Scott still has his website up and running for a few more weeks! Let's help him get to $50,000 before he closes out his site for this year! Visit www.runningfortripp.com for details on how to donate!

To watch Scott Walker's live interview after the race, click HERE.

I got a little emotional after the race- seeing everyone gathered together with their "Team Tripp" shirts on and meeting people who have followed my blog and who's lives have been touched my my precious little man.

I want to thank everyone who was involved in this weekend.

I want to thank Scott Walker for taking this idea and running with it- for helping me to spread awareness about EB in Tripp's honor. I want to thank Dianne Cothern and everyone who signed up to be a part of "Team Tripp." I know God was smiling down on all of you yesterday- continuing what Tripp started. Spreading the love, spreading awareness, and doing something for us that was so much bigger than I can explain. I know how much it means to me and to all the adults and children who are affected by this horrible disease.

I am completely humbled by the generosity and big hearts of so many.

I hope all of you will continue to fight EB with me. Because Lord knows it's about time that these children and adults receive the long overdue and much needed attention and awareness that they deserve.

Scott Walker at the finish line (with the beanie:)

My Daddy at the finish line!

My dear friend Amy (from WDSU) interviewing my Dad after the race.

The only thing getting me through the days is knowing (well, believing) that my little boy's soul is in Heaven and he is playing, laughing, and running around- having the time of his life. Probably using a little stick to "bang" on anything and everything he can to play music. Maybe humming "Elmo's world" or "Shoo Fly"- and maybe even thinking of me... But most importantly, I believe that his time in Heaven is a blink of an eye compared to the time I have left here on Earth. So I pray and hope that while he's running around and playing, it will seem like only minutes to him. And I hope he's having so much fun that when he finally remembers to turn around and look for his Mommy, I'll be right there.

I kind of think of it like this video below. This shows his little personality PERFECTLY- always ignoring his Mommy. I like to think he's up in Heaven ignoring me until I make it there to squeeze him and kiss him like never before.

The cutest booty shaker EVER.

Love,

Love.

2012-02-14T00:00:00.000-06:00

Happy St. Valentines Day to all of you.

For me, today is extremely bittersweet. Today makes exactly ONE month that I've been without my baby boy. The thought of that physically feels like someone is ripping my heart out of my chest. Knowing that I haven't done a bath, a dressing change, said night-night prayers, or kissed those sweet lips in ONE whole month seems so unreal to me right now.

A true nightmare.

But I'll tell you why today also makes me smile- because today is about LOVE.

Right?

And I know all about love. Tripp taught me love. He taught me love like I've never known it before. What I've learned MOST from him is unconditional love.

A love so strong that nothing can break it... not even death. A love that shines through pain, anger, and exhaustion, but also through times of complete joy and trust. Tripp taught me that every day counts- and that every minute matters. He loved me with his whole tired little heart every minute he was alive. Never once while he was alive did I think that my job as a mom was hard. I was doing what I was supposed to be doing- all I knew how to do, and all I wanted to do. He lead me through every day and every hour by showering me with love like I've never known before. He was wise and holy beyond his years. I believe that with all my heart. I believe that he knew exactly what would happen in his time here on Earth- down to the very last minute. I believe he carried out God's plan for him.

God's plan to show true LOVE.

All of us have said "I love you" to someone at least once in our lives, I would assume, right?

Well think about what that means. What IS the definition of love? The best definition I can think of would be the one we have heard over and over. It's the letter that St. Paul wrote to the Corinthians (possibly around 30 years after the time of Jesus) in efforts to teach us how to live our lives as God had instructed us.

"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres."

-1 Corinthians 13:4-7

Now... do we really love each other? Have we broken these verses apart and thought about what God is really telling us to do and how to live?

Are we really patient with each other, with our kids, with the person in front of us in line, or the person who cut us off in traffic?

Are we kind? Do we go out of our way to do nice things for one another? Do we visit our loved ones who are sick or homebound? Do we say nice things to each other or is all that comes out of our mouths ugliness and gossip?

Are we JEALOUS? Do we spend every waking hour wishing we looked like someone else or are we so proud that we think are better than someone else?

Are we so selfish that we forget about the feelings of others? Do we forget that we are here to get to heaven... not here to see how much money we can obtain in this lifetime, or how many friends we can acquire on Facebook?

Do we forgive (the hardest, most dreaded task we are ordered to do)? Do we skip family functions because we are still angry at Aunt Sally because of something that happened 10 years ago? Do we avoid a friend in the grocery store because of something that happened that has absolutely no meaning to us anymore? Life is SHORT, people... and life here on this Earth has one purpose and one purpose ONLY-

TO GET US TO HEAVEN.

Do we just have to love God and our spouse, children, and family?

Or are we instructed to love EVERYONE?

"The most important commandment is this: 'Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.' The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these."

-Mark 12:29-31

Are our neighbors just the people who live next door? Our neighbors are anyone and everyone around us. They are the person in front of you in line, they are the person that cuts you off in traffic, they are even the orphans in far off countries.

Why are we wasting so much of our energy on things that just don't matter?

Why are we storing up all of the LOVE we have to offer? What are we waiting for?

Today- for me and for Tripp- do something SO special for someone that it makes God smile.

It doesn't even matter if that person appreciates it or not- just do it. Step out of your comfort zone! Pick up the tab/bill of a stranger, help someone carry their groceries, visit a family member that you haven't seen in years, or just simply hold the door open for someone.

What happened to the world when people did nice things for one another without needing anything in return? Pay it forward. Every action and every small deed counts. You never know when you are making a difference in someone's life.

And I promise you... that you will feel so good about yourself that you might even want to do something nice for someone EVERY DAY (gasp)!

And the next time you tell someone you LOVE them, think about what it means to LOVE them. Do you say it out of habit or because it's what you think you're supposed to say? And better yet, try just SHOWING someone you love them without even saying it.

Because, we've all heard it before... but it's so true:

Actions speak louder than words.

So make your time here on Earth worth something, because you never know when your time will be up!!

"And he said: 'I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven'."

-Matthew 8:3

LOVE,

A little piece of my heart.

2012-02-05T23:30:00.000-06:00

I'm struggling with finding the right place to be.

I think I've come to the conclusion that I've been too strong for too long. That's the only thing that makes sense to me right now. For exactly 2 years and 8 months I had to put on my happy face, I had to "suck it up," and I had to pretend like I was okay (and with Tripp here, that was so easy to do)... but now, I feel like that's the only thing I know how to do. I am still trying to put on my happy face (mainly because I hate to think that people feel sorry for me) and trying to pretend like I'm okay.

I think I'm still in "you have to be tough" mode.

Except I don't WANT to be tough. I want to cry, I want to grieve. My body just won't let me do that right now and I'm not sure why. I think I'm trying too hard to keep busy and do things because I'm scared of finding a new "normal." I don't want a new normal. I know the grieving will come, I'm just wondering how long it will take for reality to set in. I don't want this life of being able to do whatever I want. I don't want the life of not having my baby to take care of. I don't want this feeling of guilt every time I smile or laugh without my baby. I want to be smiling and laughing FOR him. I want to be able to talk in my "Tripp voice" again and make him chuckle. I would literally give anything in this world to have my life back... my life with him- minus his pain.

I've been thinking a lot about my faith and the fact that I have so much trust in the promise that Tripp is with God and in a better place. I'm just so thankful for that. I just can't imagine going through losing a child and wondering where he or she is and if they are okay. I also think that has a lot to doing with how I am "grieving." Not that it takes away the pain of not having your child in your arms, but it helps tremendously with any concerns that I would have about whether or not Tripp is okay.

The homily and readings in mass today were about suffering and why Jesus would allow bad things to happen to good people. And the bottom line is... that we don't KNOW why God allows these things to happen. We can speculate, but we don't know. We won't know until we are able to ask Him ourselves. But what I do know is that God never left my side. In the dark times, and in the happiest times...He was there through my family, friends, and the relationships I made, He was there through all of you guys, who have been and still are the best support system I could have had. And He was there through my little angel- who's smile gave me more peace and happiness than I could have ever asked for.

Do I think that Tripp was part of God's plan for bringing people closer to Him?

I absolutely do.

And as tough as it is, I'm still trusting in His plan and praying that He will lead me where I need to go and lead me down the right path in these upcoming months and years.

I know that I will write a book... I know that I will continue to blog... and I know that I will fight for EB for the rest of my life... I'm just not sure yet how I'm going to these things when a little piece of my heart is missing.

Love,

The sweetest kisses you'll ever see.

2012-02-01T21:29:00.001-06:00

I've been meaning to post this video.

It was the very last video that I took of my sweet man.

It was taken maybe 3 or 4 days before he left my arms...

It was the first time in weeks that he did anything like this.

Warning: if you have a heart, it will surely melt.

I love you baby... I miss you every single day.

Love,

A note from Grammy

2012-01-28T22:28:00.000-06:00

No one really teaches us how to become parents.

We learn from our parents and grandparents.

We read books, we google and we pray that we do the right

things to make us qualify as good parents.

Courtney, when you were very young,

you loved taking care of your dolls.

As you grew older,

you loved taking care of other people's children.

They were always attracted to you and your smile!

After you became a nurse,

you loved taking care of your "little old people".

You REALLY loved it!!

When little man was born,

you were sure to love taking care of him.

I knew you would be an incredible Mom!

I just didn't know HOW incredible!!

You stepped into the unknown world of EB

and gave your ENTIRE self....

EVERY DAY and EVERY NIGHT!

For two years and eight months you gave!!

The minute Tripp was born, you showed him nothing but

love, patience, joy, happiness and

PEACE.

I know you prayed for peace for him,

but you gave him peace just by your presence.

From the first breath he took until his last breath in your arms,

you surrounded him with an amazing peace.

He loved your voice and how you smelled.

He loved for you to sing to him and "rock rock" him

and whisper "I love You" in his ear.

You and he had a perfect love.

I watched you bring him peace every day!!

He was happy because all he ever knew was happiness from YOU!

He smiled because of you!

He chuckled because of you!

He danced and shook his booty because of you!

He played his drums in perfect rythm because of you!

He loved Elmo because of you!

He even fussed us because of you!

He lived for two years and eight months

because of you!

You are an AMAZING mom groomed and handpicked by God

to nurture one of his angels.

You did the most incredible job TAKING CARE OF Tripp.

God Himself prepared you well!!

It was such an honor to help you care for him.

Thank you for trusting me with your Angel!

I wouldn't trade a single second of the time I spent with him!

I too wish I could do it 100 more years, minus the pain.

What a brave little soul he is.

He captured hearts all over the world.

He was, is and always will be my HEART!

Grammy's Angel!

I love you and I am so very proud of you Courtney!

I love you Bubba.

You are the strongest little man I will ever know.

You gave each of us a new lesson about

love, patience, kindness, selflessness and generosity

without speaking a word!

WHO DOES THAT?

You and your mom are heroes to me and many others.

I will miss you every single minute of every single day.

Take good care of your Mom now!

Thank You...
First to God for trusting me to help care for His Angel.
What an amazing gift he was.

Then to everyone who had a part in helping Tripp

with his mission on this earth.

His mission isn't over yet,

as he is still bringing people closer to God!!

He has made me and anyone who "knew" him

a much better person.

One last thing...

Courtney assures her Dad and me that she will

be taking care of us in our old age.

I feel extremely comforted by this.

All my love to each of you reading this.

Your love and prayers helped

Courtney through many dark days.

Please continue to pray for her peace.

Love,

Anita

Courtney's Mom

Tripp's Grammy

Missing my baby...

2012-01-22T21:09:00.004-06:00

Yesterday made one week since my little man went to heaven. And yesterday was the hardest day so far. A whole week? What have I been doing for a whole week? How in the world have I made it a whole week without kissing those sweet lips or holding those sweet fingers? I miss him more than I know how to say. I miss his face, I miss his smell, I miss everything about him and our life together. I've been trying to do normal things... I've gone to Target, I've gone to get ice cream, and I've gone to dinner with my family for my grandma's birthday. But it's hard to just "go on" and try to be normal. I feel guilty for everything I do. Nothing feels real or right. I would literally give anything in the world to have my baby back... I don't want a "normal" life. I want my life with Tripp back. I would take care of him every day, all day, for 100 years if could. My body is numb... my emotions are numb... and each day has been like a blur. And now that I don't have him here, I realize HOW MUCH my life actually revolved around him. I know that I didn't take a single minute for granted... but what I wouldn't give to have just one more day with my baby. There's just something about knowing that you can't have something, that makes you physically yearn for it.
I miss him so much.
I could have NEVER prepared for this... no matter how long I was given.

Nothing of Tripp's has been moved yet... not even an inch. His toys are the same, his bed is the same, the rocking chair is the same and his medicines are in the same spot. Nothing has been touched. I don't know how long it will take me... and maybe that is why I haven't been able to grieve properly (not that there is a "right" way to grieve), but maybe it's why I feel like it hasn't hit me yet... like it's not real. Like this is some kind of terrible nightmare.
All I can think about and see in my head is his precious, beautiful face the last time he was in my arms.

Tripp's service was beautiful. There was an outpouring of love and support from SO many people. Most of the people that I hugged began their conversation with "You don't know me, but..." That is a true testament of the lives that Tripp has touched. For so many people that we don't even know... people who have never even met Tripp, to come out and show their support is so incredible. Thank you to those who were able to come out and support us, and thank you also to those who could not make it and showed your support from home by your prayers, lighting candles, and offering moments of silence. I could truly feel the love on Wednesday. There were people who stood on the side of the road, holding signs with words of love and support for us to see on the way to the cemetery. And businesses all over town hung red balloons in honor of Tripp. It was truly amazing to see.

I have gotten some requests from people to post my speech from the service, so here it is...

I would honestly like to tell you all that I’ve never had to think about what I was going to say at my son’s funeral, but the TRUTH is that this exact moment has played over and over in my head for the past few months. What a nightmare... having to say goodbye to your only son. I don’t know which is worse- losing a child unexpectedly, or having years to plan your goodbye, knowing that it is coming whether you are ready or not. I’ve pictured this very moment in my head... me standing here, and all of you guys gathered here for my son. But even though I’ve pictured it again and again, deep down I had hoped with my whole heart that it would never really happen. But here I am.
You might think that I feel just a little bit of relief, after watching my baby suffer- day in and day out- but I don’t. I’m not relieved at all. I want him in my arms. I want to hold his sweet little fingers. I want to sing to him. I want him to smile that amazing, “melt your heart” smile. I want to spend every minute of my day taking care of him- because that’s all I know. I don’t know how to do anything else. I don’t want to do anything else.
I know I will heal with time, though this hole in my heart will never, ever be filled. Every single moment for the rest of my life, will be bittersweet, because I won’t have my baby to share it with. It still doesn’t seem real. I have spent the past 2 years and 8 months living like a Tiger mom, never letting the doctors or nurses really even touch Tripp, and making all the decisions myself. And this Saturday, for the first time, I had to hand over my baby, knowing that I would never see his little face again. Having to TRUST that someone else was going to take care of him the way that I have taken care of him. But I suppose if you have to entrust your child’s life to someone else, who better than God himself, right?
Over the past few weeks, we have all prayed for peace. I have prayed that God’s will be done, whatever it may be. And I can tell you that our prayers were answered. Tripp’s passing couldn’t have been more peaceful. He was in his favorite spot, in the rocking chair, in my arms, with my mother at his head. God took care of him. And he took care of us. And as far as God’s will, I think we can all look around and see what that was. Tripp has brought all of these people together in one spot, in prayer. No matter what faith you are, and no matter what you believe... right now we are gathered as a family, as Tripp’s family, and as God’s family. And we are putting aside our differences, trusting and believing that Tripp is sitting on Jesus‘ lap at this very moment, happy and healthy, looking Jesus in the face, and saying, “Look, Jesus, at what I’ve done? Aren’t you so proud of me?” I bet Jesus is proud. I know that as Tripp’s Mommy, I could never, ever feel more proud.
I know that my life will never be the same because of Tripp. He is the most precious gift I’ve ever received. I hope that he will continue to change the lives of so many people even though he is now in a far better place. I hope now he will be watching over and taking care of me, because I now need all of the comfort and care I get.
Thank you all for coming today. And thank you for the support that you have shown Tripp, myself, and our family. I know Tripp is smiling down on everyone here today, knowing his job here on Earth was done. And done well.
May God bless you all.
Thank you.

It would be impossible for me to personally thank everyone who was a part of the services on Wednesday, so I want to extend a very special THANK YOU to everyone who pitched in to help us. Everyone who brought food (which was wonderful), the beautiful flowers everyone sent, the people who volunteered their time to set-up or help clean up, and everyone else who did ANYTHING to make Wednesday (and this whole week) just a little bit easier for our family. Once again, I have THE MOST AMAZING support system, ever.

A huge thank you to all of the people who came from out of town, especially Patrice (Jonah's mom), Tim (Bella's dad), Sam, Chloe, and Marybeth Sheridan (Sam was one of the first of the EB kids to go through the Bone Marrow transplant), and also I got to meet the amazing family who are adopting Anton. I was so surprised and happy to see them there. It was SO awesome to get to finally meet so many people who you feel are already like family. I've talked to Patrice so much over the phone and through text that when I finally met her, I really felt like I knew her my entire life. She is everything I expected her to be and more. An amazing and inspiring woman. I was so glad she got to come to the house afterwards and spend some time with us. I can't wait to spend some time with her under different circumstances... not such sad ones.

Meeting Sam Sheridan was an experience that I will never forget. I wanted her to know HOW MUCH her being there meant to me. Sam is 16 years old and has Dystrophic EB. She is so beautiful. And she is so brave. Sam, her mom Marybeth, and her sister Chloe drove down from Tennessee to come to Tripp's service. I know it must have been hard on Sam. What an AMAZING young woman she is. Thank you, Sam, for letting me hug you... and thank you for being so brave. I promise you that I will fight for you, for Tripp, and for every other person with EB for the rest of my life. None of your suffering or Tripp's suffering will be in vain.

When the day of the service was over, and everyone had left our house... our family was gathered around the table, just talking about the day when my sister found this video on her Facebook page. Now, I don't know if you guys know how many times I have searched "Elmo songs" on YouTube, but I can assure you it was hundreds of times- and I had never before found this one. It's called "Little Butterfly Friend." Think it sounds perfect for Tripp? Just watch it... it's the sweetest, most perfect song ever... 1. because Elmo sings it.. and 2. because it's about one little butterfly who Elmo calls his "friend" and holds in his hand. Think this song came at the right time? The day of his funeral... Think it was my sign that I had never heard it until THAT very day? I'll take it. It's given me comfort through this past week.
Thank you, Elmo.
I know it wasn't written for Tripp, but it couldn't be more perfect.

I miss you my little man... so much that it hurts.

I'd give anything to have one more day with you.

Just to kiss your sweet face and tell you I love you.

Mommy is so proud of you.

Your wings must be SO big....

Love,

Tripp's services

2012-01-17T09:58:00.001-06:00

Tripp's services will be held at St. Joseph's Catholic Church in Ponchatoula on Wednesday, January 18th.

Visitation will be from 10am - 1pm, with a mass of Christian Burial starting at 1pm.

Interment follow in the Ponchatoula Cemetery.

His services are open to all who loved Tripp and want to join us in prayer.

Love,

Heaven's little drummer boy.

2012-01-14T22:55:00.005-06:00

My precious angel received his wings today.

I have had many nightmares about having to write this post.

He was exactly 2 years and 8 months old.

It happened within minutes of me picking him up out of bed and rocking him.

He took his last peaceful breaths in my arms, in his most favorite spot.

My heart literally hurts more than I ever thought was possible.

I'm completely lost without him and don't know where to go or what to do when my feet hit the floor.

I miss him so much it physically hurts.

Please don't forget to thank God for the PEACE we prayed to him for.

And please bear with me as I try to pull myself together.

I will let everyone know as soon as I decide on the details of his services.

Thank you all from the bottom of my heart for the support through this unbearable time.

I know he's flying high, pain free, and talking Jesus' ear off...

But that doesn't take away this selfish feeling of wanting him back in my arms.

I love you, Bubby.

Mommy misses you more than I promised I would...

I hope Jesus loves your drumming as much as we all did.

Love,

The strongest boy I'll ever know.

2012-01-12T13:57:00.002-06:00

Things are not going well.

Actually, things are getting bad pretty fast.

I've known for about a month now that this time wasn't one of the times that my little man was just going to "bounce back." He's too sick... sicker than he's ever been. For about 2 months now, he has been laying in the same position, and not doing much of anything. He has had major anxiety issues (which I think we FINALLY have under control, thank you God). And in the past 3 days, he has spiraled downhill even more so.

He has started to swell... (hands, feet, head, scrotum, lips, eyes... you name it). He has WELL over 4+ pitting edema in his hands, feet and head. His poor little swollen hand can't even hold his Elmo anymore (I'd rather you cut off my legs than my baby not be able to hold his best friend, Elmo). The swelling is not a good sign. It's called "third spacing." This means that water is leaking from his blood vessels and collecting in the tissue areas between his cells. This is usually caused by an electrolyte imbalance or the inability of the organs to function properly (which we think he could have both, or it could be from something else, we have no idea). Dr. Defusco came to the house yesterday. She spent about 6 hours with us. She was there through his entire bath and then stayed after to discuss things and just talk. She's so amazing- I can't say enough great things about her. Seriously, I wish every doctor cared about their patients like she does Tripp. It's very admirable.

Dr. D doesn't think Tripp has much longer to be with us. And seeing after seeing what he looked like yesterday and today, I have to agree with her. His poor, sweet body is so tired. The swelling is new- he's never been swollen like this before, ever. He can barely even muster a smile to tell us "yes" or "no." It's so sad. I'm so sad. I knew keeping him at home would be hard, and it is. But I also know that it's a decision that I will never regret.

He's throwing up with anything I put in his stomach- so she also wants me to slow down on his feeds. She thinks that at this point his little body doesn't even feel hungry. But as a Mommy, I can't make myself just stop feeding him... unless I'm doing more harm than good (which it's coming down to now). That will be a decision that I will take literally minute by minute. We ask him if he's hungry or thirsty very often... and he is still somewhat able to tell us yes or no with a little smile or a head shake.

He is SUCH a fighter... sometimes I wish he didn't think he had to fight so hard.

He's so incredibly strong.

He is also having trouble regulating his body temperature (which is a sign of the electrolyte imbalance, perhaps an overwhelming infection, and/or his immune system just shutting down). His little extremities are so cold. And his temperature has gotten as low as 93.7 degrees. That's a huge and fast change from the fevers he has been running in the past few months.

Within the past three days, I think we have finally found a pain/anxiety medicine regimen that is working for him. I can finally say that I think he is as "comfortable" as he's going to get. He is sedated enough not to constantly cry due to anxiety but is still able to hear us and know what is going on. Yesterday after his bath was the most comfortable he's looked in months. Even during bath was better considering how bad he looks and is feeling. I'm so grateful. He's been sleeping well at night and I'm not having to suction him as much because his breathing is shallow, but very easy and comfortable right now. That is specifically what I've been praying to God for every night- peace in whatever form He can give it. Now I'm not saying that it won't get worse, because I'm almost positive that it will. I don't know how long he can hold on like this. I just pray that we can keep him this comfortable until it is time for him to go to Heaven- whether that be days or weeks. And I pray for him to be able to pass as peacefully as possible- at home- in his comfort zone- with the people who love him- where he belongs.

Thank you all so much for your continued support and prayers. Please keep the prayers coming, as we need them now more than ever. If you like to pray for something specific, please pray for PEACE... for Tripp to have peace from everything causing him discomfort.

I am so thankful for my faith at this time.

I often think about moms who have lost children (or anyone who has lost anyone for that matter) who don't believe in God or in Heaven. Do they wonder where their children are? That must be the worst, most awful feeling. I'm so grateful that I am certain Tripp's soul will be in Heaven and that one day I will see him again.

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away.”

-Revelation 21:4

What a promise, right? No pain, no mourning... just me and my baby boy- EB free. I can't wait until that day. I have been reassuring him that it's okay for him to go home to Heaven.

I tell him that Mommy loves him so much and that I am so, SO proud of him.

I tell him that in Heaven, he will never hurt again and he will be able to run, talk, and play like a normal little boy.

I tell him that there will never be a day that goes by that I won't miss him with every fiber of my being.

I tell him how many people (like you guys) love him and that he has done such great things just by being alive.

I tell him that I promise him that I will be the very best person I can be so that I can meet him in Heaven when it is time and give him the biggest, tightest hug he has ever had.

I tell him that he has made me a better person for the rest of my life.

I tell him that he is the strongest boy I'll ever know.

Love,

Catching up...

2012-01-05T13:50:00.000-06:00

Hi there.

I want to first thank everyone for the encouraging comments and also all of the holiday wishes!

And also a huge thank you to everyone who sent gifts to us! You guys are amazing.

I hope every one had a great Christmas.

This Christmas was a hard one for us- as I knew it would be. When I think of what Tripp "should be" doing at 2 1/2 years old, it makes me really sad to think about all that he is missing out on. Santa Claus, opening presents, baking cookies, etc... We've never even come close to that. BUT, he is surely surrounded by LOVE, and I think that is what's most important.

This Christmas was pretty low-key for us. On Saturday (Christmas Eve), my parents went to my family's house in Lutcher, and Stephen spent the day here with Tripp and me. Then that night, my mom kept Tripp so we could visit with some of my family here. Then, me, Stephen, my brother and his girlfriend Ashley all went to midnight mass. On Sunday, Tripp's MeMe and PawPaw Carey came to visit and exchange gifts for a couple hours. And then finally, Christmas night was when Tripp was alert enough for me to open his presents for him (it was bath day, so he had sedatives in him). I could have just wrapped about 10 empty boxes, because the only part he liked was the noise when I tore open the paper. He wasn't interested in any toys I bought (which I expected... he hasn't been in to ANYthing lately). He did however, play for a few minutes with one new little music maker.

And when I say "a few minutes," that's even pushing it. Playtime has pretty much been non-existent (even on the rocker) and he hasn't stood up in about 3 months.

Bubba's days have been about the same, give or take some really bad ones. His bottom is really raw right now, so even diaper changes are dreaded and he needs extra pain and anxiety medicine for each change. And it takes him a while to settle down after they are finished.

Though he is struggling with pain and I'm trying to find the right pain regimen (which is nearly impossible when he can't speak or communicate about how the meds work or make him feel and also the fact that we have no idea how his body is metabolizing it), he is also struggling with anxiety. I think he's always "on the edge" and sort of always "expecting" that we are going to do something to him. He anticipates diaper changes and trach changes at night, so he cries and switches between me and my mom in the rocker almost every 2 minutes at night. We talk to him constantly, explaining when it's "time" and "not time" for diaper change. But I think the trust factor is gone and he doesn't trust that we mean what we say. It's horrible and sad, but I have to change him... I'm not sure how to go about fixing this anxiety issue when changing him has to be done.

I've been doing his baths earlier in the day. I try to have everything set up before he wakes up in the morning, that way I can give him his sedatives while he's still asleep and he doesn't have to wake up and be anxious all day. We just get it over with. I was waiting until late in the evenings before because I had to give him the sedatives, and I didn't want him to sleep all day after bath. But at this point, when he's just miserable all day anyway, I figured the sooner the better where he could relax for the rest of the day knowing it was over (until night time of course, when he gets anxious again). The sedatives don't even really put him out anymore anyway, they just work as an anti-anxiety for him- even at high doses. Sometimes I think my baby is super-human;)

So still, our days consist of being in the rocking chair and rocking all. day. long. Thank God I don't get "rocker-sick," because I get car sick, plane sick, boat sick, etc. ;)

What gets me through each and every day is that one line from the poem "The Brave Little Soul" that I posted previously: "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength." I have to trust that God is with him and that He is helping him bear this tremendous amount of pain, because I don't know how any child could possibly be this strong all alone. I talk with him every night... about God, about heaven, and about how Mommy will be okay (one day) if he is too tired and ready to go home to heaven.

But this kid is a fighter. Sometimes I just wish he wasn't so strong. My heart is aching for him to have some peace, however that my be.

I'm so grateful for all of the people in my life. This past year has been life-changing for me in MANY ways. I have made some A-mazing friends- friends that will last a lifetime. Friends that have been there for me through every hardship- even from a distance. These people have gotten me through the hardest time of my life. And for them, I am forever grateful.

I am also blessed to have an amazing guy in my life. I thank God every night for sending me someone who loves me and loves my son enough to face our situation head on. I am grateful that Tripp finally has a man-figure as an active part in his life (other than his Papa and PawPaw Carey). It was a scary feeling going through a bad divorce and wondering who in the world would ever want to take on a woman (a stressed out woman, might I add) who never leaves the house... but also her sick child who requires her attention 24/7? I've known Stephen since kindergarden- we went to school together until high school. But there's something about being a little older and a little wiser... it isn't until then that you know exactly what you want (especially the second time around). He came into our lives and has been exactly what I have needed. I could not have made it through this past year without him. I couldn't ask for anything more. He is wonderful, his family is wonderful, and I finally know what being happy feels like.

And guess who is in town this week...??

My sister and her husband!

We didn't get to see them for Christmas, so we are so excited to get to spend the week with them. We will do our family Christmas tonight, opening presents together and I'm sure eating a whole lot:)

They don't leave until Tuesday morning... and I'm never successful in getting them to stay longer, so I guess I'll just enjoy the days that we have!

I hope you all have a great weekend!

Thank you, as always, for the continued prayers for peace... in any form.

Love,

Merry CHRISTmas...

2011-12-22T11:25:00.000-06:00

...from our family to yours!

"Shall we indeed accept good from God and not accept adversity?"

- Job 2:10

Love,

Matthew 12:36-37

2011-12-19T11:28:00.006-06:00

They had a beautiful article on ABCnews.com this morning and I want to thank everyone who has left positive comments and words of encouragement to us. It is TRULY appreciated. And I know those of you who have followed our story and know what's REALLY going on, already KNOW how much I appreciate it. You guys are what keep me going on a daily basis.

But I guess trying to spread awareness about your son's extremely rare condition nationally has it's downfalls, too. You get people with all types of opinions, and that's okay. But there will not be people leaving comments on our story like that without getting MY opinion back.

So for those of you who are not educated on our situation, let me begin...

Tripp's life has not always been like it is today. Please, I encourage you to actually read this blog- look at the pictures on the top link, look at his videos. He has not been confined to the rocking chair, blind and in pain for 2 1/2 years. He has been given the best life possible in his situation. And I can say that because I have put my heart and soul into making sure he has. He is the best kid I know- he has the most radiant personality I've ever seen. Before he was confined to the rocker, he would play every day, he could drum to the tune of a song like NO OTHER. He would smile, laugh, and melt your heart. He has changed my life forever and the lives of the people who love him forever- just by being in this world for 2 years.

And the people who made comments about me doing this for publicity? Think about what you are saying... You are saying that I would rather see my child (MY CHILD- that I dreamed about, that I LOVE and gave birth to) in pain every day by CHOICE? Because I want to be in the public? Really? I'm so sorry that you actually think a human being would do that.

And as far as "putting him out of his misery"... ALL I'm asking is that you actually read and educate yourself on a situation before you cast judgement.

This has been an extremely gradual process. Only within the past few months, has Tripp gotten to the point where he doesn't feel well enough to play. And only NOW, for the first time in 2 1/2 years am I having to question his quality of life. And I am doing everything in my power to make him comfortable for the rest of his time here.

So please, please.... know what you're talking about before you make a comment about someone's child and someone's family who has gone through more in 2 years than you could imagine.

I'm trying to understand your comments, I really am.

But I'm just not sure what people think I am supposed to do? He is BREATHING on his OWN. He does not have a tube that he is breathing from that I can just pull the plug on.

Yes, I admit, if he was breathing by means of a ventilator and was suffering this way, then of course, it would be about me making a decision to "let him go." But this is NOT THE CASE.

I cannot starve my child- who in their right mind could do that?

I don't CHOOSE to torture him through baths every other day- I HAVE TO CLEAN MY CHILD. It's not a choice. What I CHOOSE to do, is sedate him so that baths are easier on him. That is my only option.

Sometimes I wonder if people really even believe what they write? Like they think I would choose this life over my son's health. Like they think I enjoy giving up every second of my life to have to fight for my child's life. Who would choose this life? Certainly not Tripp, not me, or any of us- knowing what it would entail. But we have stepped up and done what needed to be done to give my son the BEST care possible.

And I'm sorry for those of you that can't understand that.

And I am SO THANKFUL for the people who DO understand that.

And as far as the comments about having more children or for me to "stop breeding," I don't know where these things are coming from, but let me educate you AGAIN-

Yes, this was a genetic disorder. No, my ex-husband and I did not know that we had a 1 in 4 chance of having a baby with EB- there is no test for it before the baby is born.

But if or when I do remarry, my future husband will be tested to be certain that he does not carry this same mutation (that is 1 in 2 million) so that we can be sure that this doesn't happen again. So as far as being irresponsible in ever wanting to have more kids in the future... AGAIN, please educate yourselves and do not make things up because you want to believe them. There is no way that I would selfishly subject another child knowingly to this disease. Come on people... It's ridiculous that I have to clear those types of things up.

I did not contact ABC to get this article published. They contacted me. And I appreciate it so much. I, along with many others, thought it would be a great way to spread awareness about these precious kids and adults who suffer from a disease that is so rare that no one knows about.

It is hard and hurtful to be faulted and judged for wanting to do everything you are capable of to end a disease so that NO ONE ever has to go through this.

So I hope that even through the nasty comments, that this will bring MUCH needed awareness about EB and eventually lead to a cure one day SOON. And I hope that the people who chose to comment before reading our story will take the time to read and learn and educate themselves...

But most importantly, I hope they will get to know my little man's personality through pictures, video and my words- and know that he is nothing but a normal, innocent child who was given an unimaginable cross to bear, so that other's lives (like mine) would be changed forever.

"I tell you, on the day of judgment people will give account for every careless word they speak, for by your words you will be justified, and by your words you will be condemned.”

—Matthew 12: 36-37

Again, thank you with all my heart to those of you who support us, support my decisions, and love my son.

Thank you for understanding and learning and educating yourself about EB.

And THANK YOU, ABC News for featuring our story and helping us to spread the word!

I love you, my sweet little man... and no one knows your heart like Mommy. And NO ONE knows when you are ready to leave this Earth, except God. Thank you for blessing my life beyond words.

I will be right by your side, doing whatever I have to do to make you comfortable for as long as it takes. You are my WORLD.

Love,

The Brave Little Soul...

2011-12-11T00:22:00.000-06:00

Hey guys! Sorry it's been awhile, but it's hard for my to post when I'm in a "funk," which I have pretty much been staying in lately. And also, the fact that not much has changed, or gotten better, for that matter. Things are rough, I'm not going to sugar coat it. And as rough as I think things are right now, I know in the back of my mind that this is just the beginning of the "hard times." My little fighter isn't ready to give up. His strength is a lot of times incomprehensible. I just don't get it. I don't get how he keeps going.

This past week, I had 3 ulcers in my mouth... and the pain it caused me to eat or brush my teeth was so bad that it brought tears to my eyes almost every day to think about how much pain Tripp is in- and that's only his mouth. His mouth is terrible- sores everywhere, gums swollen and look completely raw, his teeth shifting because of tissue from other parts of his mouth/gums fusing in between his teeth. Not even mentioning the fact that he can't brush them or clean his mouth other than swabbing it with some disgusting antibiotic/steroid numbing mouthwash (which works for not even 5 minutes).

His days consist of going from the bed, to the rocking chair, then back to bed. No standing up to play. We are lucky and happy to get him to smile or even want his music on in the rocker now. He's miserable. I have to pick him up out of the bed in the morning unwillingly because he knows that when he gets up, he has to get his diaper changed. Then at night when it's time for bed, he doesn't want to go back in bed because he knows he has to be changed again. And bath days, oh man, me, Grammy and Tripp ALL have anxiety. I think now he spends EVERY day just "wondering" if it's bath day and having anxiety regardless thinking that we are going to bathe him. Sometimes we forget that he's 2 1/2 years old and that his brain is in tact 110%. He knows when we are "whispering" about it, or trying to spell the word "bath." We even renamed it, but he figured that out, too. He's just too smart. He can sense my anxiety, too, I think. I DREAD bath time for him. Sometimes I pray that he doesn't live to have to be put through another bath. There is no way to explain the feeling of wishing God would take your child home rather than him suffer the way he is on Earth. It's a terrible, guilty feeling. I go through so many emotions a day that it's not even funny.

His little bottom and his legs just look bad. They are draining and itching. I'm sure he's covered in pseudomonas and yeast, just as he's always been. I tried a new bandage called Hydrofera Blue recently (courtesy of Ms. Leslie Radar, of course:) and his sores started looking A LOT better. I used it for about 3 baths in a row, and then once his sores started looking better and not having a lot of drainage, I couldn't keep the bandages moist enough and they stuck to his sores, ripping open A LOT of new skin. You EB moms out there know this feeling- there's NOTHING worse than trying something new and causing more harm than good. So needless to say, I haven't used this bandage since then, even though I think it did some good, it did more harm that one time than good.

This morning when I got him up to change him, the tip of his little penis had a big blister on it :(

This instantly made me sick to my stomach. This area was the ONLY area that we have never had problems with. Tripp wasn't circumcised at birth (thank GOD), so that has helped him in not having issues with that area. That has been just a small blessing, I guess. But today when I saw that, I just wanted to cry. I don't know how much more he can take. Seriously, I don't know how he has the strength to wake up in the morning. But I'm sure thankful and so blessed each day that he does.

He is my HERO.

I want to share this poem that my sweet friend, Christie, shared with me.

Thank you, John Alessi, for restoring my faith when I feel like I'm literally hanging on by a thread.

This is absolutely beautiful.

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.

People gave from their hearts.

Those that were always too busy found time.

Many began new spiritual journeys, some regained lost faith - many came back to God.

Parents hugged their children tighter.

Friends and family grew closer.

Old friends got together and new friendships were made.

Distant family reunited, and every family spent more time together.

Everyone prayed.

Peace and love reigned.

Lives changed forever.

It was good.

The world was a better place.

The miracle had happened.

God was pleased.

To me, there is NOTHING that describes Tripp's journey better than this poem.

It has helped me tremendously this past week in trying to understand why this is happening.

And trying to comprehend the pain that my baby is in.

I'm trusting that Tripp and God have this "deal" and that Tripp will let God know when he's had enough and when he's finished his time here.

What a brave, brave little soul.

My brave little soul.

I'm so sad, so proud, so angry, so confused, and yet so blessed.

I know it's just going to take time and only the time will tell.

Time flies when you're having fun, but it doesn't fly when your precious child is suffering.

I just want him comfortable. I'm trying to hard on my own to make him that way, but I know that he will never be truly comfortable until he is sitting on the lap of Jesus.

*photo by Christie Zink of Elan Images Photography

**P.S. Please don't forget to check out Tripp's Trees in the post below!

Love,

Trimming Tripp's Tree(s)

2011-12-11T00:19:00.000-06:00

Well, everyone was right. We needed another tree. And then another tree. And now the third one is full, so stay tuned... My mom was didn't even get her "big" tree down this year. But the year isn't over yet:)

Thank you SO much to all of you who sent ornaments. It is truly amazing to see them coming in from all over the world! I never thought we would get such a large response! I will treasure each and every one of these forever.

This is going to be a REALLY hard Christmas, to say the least.

And you guys are making it just a little bit easier, by being so incredibly thoughtful:)

We are literally surrounded by all of your love every day now!

Tree #1

Tree #2

Tree #3

Love,

Happy Thanksgiving

2011-11-24T12:52:00.001-06:00

"Give thanks in all circumstances, for this is God's will for you in Christ Jesus."

-1 Thessalonians 5:18

I am thankful that I am the Mommy of this angel on Earth.

I am thankful that God trusted me to care for Tripp the way he deserves to be cared for.

I am thankful that Tripp loves me back just as much as I love him.

I am thankful for everything he has taught me in his 2 1/2 years, that I otherwise would have never learned.

I am thankful for every. single. second. that I have had with him and WILL have with him.

I am thankful for my family- the best family a girl could ask for. Period.

I am thankful for my mother at my side 24/7, loving and helping me unconditionally.

I am thankful for the special people that God sent to me in the past year- the people who have made my life 100% better just by being in it.

I am thankful for my friends- new and old- who have been there for me no matter what.

I am thankful for all of our supporters- near and far- who lift us up and keep us "keeping on."

I am thankful that God sent his son to die on a cross- to save us from our sins, so that we can have eternal life with Him, making me CERTAIN of where Tripp is going when he leaves my arms. There is nothing more comforting.

I am thankful for the faith that I was raised in, for it helps me to better cope in my situation.

I am thankful for a roof over my head, food to eat, clothes to wear, and all of the frivolous things that I don't need, but have been blessed with anyway.

I have never felt more blessed.

Thank you, God.

Love,

A LOT of catching up to do...

2011-11-21T15:17:00.001-06:00

SO...

I really don't even know where to begin or where I really "left off." But I'll start off by being honest and saying that I've been a little secretive lately- but it's for good reasons. Trust me.

Let me start with the GCSF. I think I left you all a few posts back (I think in October) where I was giving him the Rocephin injections to try and get rid of his current infection so we could get his white blood cell count in a semi-normal range so that he could try the GCSF. I had told Dr. D that the only way I was going to try these injections was if everything was lined up with the GCSF so that if the blood work was good, that there would be absolutely no "window" of time for his count to go back up before we got to start this new drug. Well, about 4-5 Rocephin shots in (just FYI, those shots were horrible- something I will never do again), we drew his blood and his white count was in normal range (high-normal, but normal).

So, with the help of Tripp's amazingly wonderful pediatrician and our amazingly wonderful pharmacist, "Uncle Trea," I had the GCSF in my refrigerator that same day.

So I started the GCSF (Granulocyte - Colony Stimulating Factor), giving it subcutaneously (under the skin, into the "fat"). This drug is used mostly in chemotherapy patients to help stimulate the production of certain white blood cells. I won't go into detail about what this drug is doing for EB. Because honestly, I don't know enough about it- it didn't work in Tripp. But that doesn't mean it hasn't had good results in other kids or adults with EB. But Tripp has a lot going on... he's on constant steroids that we can't get him off of (we tried and were unsuccessful) and even though his counts were normal at that time, doesn't mean his infection was completely gone. And those were the two things that we were told could affect the results of this drug... but I had to try it anyway, to at least say that I tried.

So GCSF is a no for Tripp.

The next secret is kind of a big one. But in my defense, I didn't want to get anybody's hope's up.

After realizing that we had exhausted pretty much every option of making Tripp comfortable, I revisited the idea of the Bone Marrow Transplant. There has been a lot of people emailing me and posting asking me if I knew about the BMT. I've known about the transplants since they first started them about 2 years ago. I have followed many of the kid's journeys through these transplants. And when they first started, this just was not an option for Tripp- he was not yet sick enough and they were extremely dangerous and brutal in children under a year old. If you aren't familiar with the Bone Marrow transplants that they are doing in EB kids, I'll try and tell you briefly what they are about. The transplant is NOT a cure (at least not yet)... It is a chance for a better quality of life. It is brutal... the side effects of the chemotherapy are just horrendous. Reading about what those children went through (some of these precious kids not making it through the transplant) was heart breaking. I felt that bringing Tripp in for the transplant at that point was giving up and taking his life.

Well, at the point that we are at now, I felt like NOT trying the transplant would be like "giving up" and just watching him die in my arms in the rocking chair. And talking to the Ringgold's (who's daughter Bella went through the BMT last year and lost her precious life), I found out that the chemotherapy regimen was less "toxic" in the current BMTs that are going on. So, I called Dr. Tolar, one of the transplant doctors in Minneapolis, MN who is currently responsible for about 18 Bone Marrow transplants in EB kids up to date. We spoke briefly about what I needed to do to get an appointment with him ASAP. The appointment would just be us deciding if he would even be a candidate for the transplant. Dr. Tolar was absolutely amazing. Usually, Tripp would have to travel to the "initial" appointment, but being as sick as he is, there was no way I could have brought him to Minnesota twice. So he said that it was fine if I came without him.

Like leave him?

(GASP)

So, I worked HARD contacting all of Tripp's doctors and getting all of his charts faxed to Minnesota. I had to write a one page summary of Tripp's life (haha)... that turned into four pages. I had gather pictures of his wounds from birth until now and we had to draw blood for his HLA testing (marrow donor). All of that was sent to Dr. Tolar in Minnesota. Now we had to see when the earliest time was that I could get an appointment, being as he is out of town a lot. He fit us in within the week. November 18th at 11:30am.

another (GASP)

So I booked the tickets right away. My boyfriend, Stephen, took the trip with me. I know, I know... now the secrets are really flowing, right? :) He has been by my and Tripp's side every day for quite some time now. Heaven-sent?? I think so. So, he and I left Thursday evening after bath and got back late on Friday night. My sister flew in town again to help my mom. Mrs. Pam (MeMe) was out of town for the week or she would have been here like she normally is every week.

The only tickets I could find with a week's notice worked out pretty well. There was no way we could pull it off in one day because our meeting with Dr. Tolar was planned on being about 4 hours. So we had to stay one night. We left on bath day, so me and mom got my little man bathed early. My sister flew in right before we took off so it worked out well. And mom and Britt didn't even have to change his neck/trach bandages because I was back the next night to do it (that is done every day). I still can't believe I left my bubba overnight. But he was in the best hands possible- no doubt about that!! Mom and Britt didn't sleep much- they just rotated and took turns watching him sleep because they were scared they wouldn't hear him and wake up to suction him when he woke. It was a blessing the way things happened, though, because he was sort of "knocked out" after bath and for the rest of the evening I was gone, so he didn't really reach for me much (he's been a Mommy's boy lately, and I'm NOT complaining... I'm loving it). So to leave for an entire night was really hard. But I knew I had no choice.

ANYWAY... on to the news...

Not necessarily good news, but it depends how you look at it.

We met Dr. Tolar on Friday. He was incredible. He made me feel so comfortable. He shares my passion for EB, for a cure, for these poor children. He is a good man. And I'm so glad I took this trip to meet him in person. It helps you to trust someone by actually looking in their eyes.

He walked in and I could immediately tell that this was not going to go as I had planned.

But that was okay, too.

The first thing Dr. Tolar said was along the lines of, "I looked through all of Tripp's pictures and charts and he's a very sweet and very brave little boy, BUT he is very very sick."

I knew right then and there that my idea of what I thought was going to happen was not reality.

I was let down and relieved at the same time. I knew this was a "last resort" on saving Tripp's life. But I also was absolutely sick to my stomach about putting him through such an awful procedure when he's already been through SO much.

Now don't get me wrong, Dr. Tolar and I talked a long time about everything. He made it very clear that if I wanted to bring Tripp to MN, that he would make it happen and that we could try to get him to a point where the transplant might be "semi-safe." But he also said that he is 100% sure that Tripp would have every single complication from the transplant. And he looked me in the eyes and said that he thought that Tripp was too sick to survive it. He was not trying to "sell me" the BMT, he wasn't telling me that for my benefit, he was sincerely concerned about my son. I felt that for sure. And I respect him for that.

I think the biggest thing that stood out in our conversation with Dr. Tolar was when he told me that he "sat in" on an EB support group. It was a group of older children who had Dystrophic EB. He said that when the kids were asked if they would rather have never been born than have to live with EB, EVERY. SINGLE. ONE. of them said that they would rather die than live with EB.

That is incredibly heart-breaking.

He said that I am "Tripp's voice." Tripp can't tell me what he wants, so it's my decision to do what I think he would want and what I think is best for him.

He told me that even though Tripp's biopsies were inconclusive to Herlitz or non-Herlitz (the two subtypes of Junctional EB), that he was 110% certain that Tripp was Herlitz- no doubt. And it was then that he looked at me so sincerely and said that it was absolutely unbelievable that Tripp was still alive. He complemented me for my care and devotion to my son. It wasn't until then that I started to cry. I know part of the reason Tripp is still alive is his care, but to hear it from Dr. Tolar... was pretty humbling.

He said it was admirable that I would make the decision to keep him at home for the "end of his life" instead of opting to take him to the hospital.

Admirable = the hardest thing I will EVER go through.

So now... what's next?

Your guess is better than mine. Dr. Tolar said that he would help me with whatever I needed and would support me in whatever decisions I made. He also said he respects my decision not to go forward with the transplant. He, along with our amazing team here, is going to help me with pain control and trying to keep Tripp as comfortable as possible.

Back to square one.

When we came back from Minnesota on Friday, Tripp was feeling horrible. The next day, he was running 102.6 fever, shaking in pain, and just crying. He hasn't wanted to get out of his bed, because he knows he has to get his diaper changed. Then he doesn't want to go BACK in bed from the rocker because he knows he's got to be changed again. I switched him back to the Dilauded for pain (along with the Methadone) and it seems to be helping a little, at least sedating him a little more than normal.

Not something I want, but again... it's not about me. It's about his comfort.

He hasn't stood up in well over a month. He lays on one side of his body, in the bed and in the rocking chair... hardly wanting to move at all. But of course every now and then, fighting hard and dishing out smiles. God, I love this child.

How does a mom opt to keep her son at home and watch him die? I'm so sad.

I don't know. I have NO clue how hard it will be. I have no clue what it will entail. But all I know is that my little boy deserves nothing more than to be COMFORTABLE. And if the transplant is not an option for him, then taking him to the local hospital and sticking him with needles and IVs is definitely not an option either. He will see Jesus when it is time and when he is tired of fighting.

I don't know when that will be. And I'm trying to become okay with that.

I'd be flat-out lying if I said that I'm not angry. Of course I'm angry that my baby is suffering so much.

But I'm praying A LOT. More than I've ever prayed in my entire life. I'm trying to understand. I'm praying and pleading and begging to understand. But I know and trust that I WILL understand with time.

I think I'm struggling the most with "keeping him comfortable." If I have to keep him home and watch him die, then why can't God at least help to make him comfortable?

ONE DAY... I will understand.

And like I told Dr. Tolar, I will fight to my death to cure this disease so that no other child has to just "wait to die." And so that no other parent will ever have to knowingly watch their child's life fade away.

A sweet lady wrote this on the "Prayers for Tripp" Facebook page.

It made my heart smile.

While I prayed for this child this morning, I asked God, "How can this be? Why? This poor child is innocent and hurting! Why does this child endure this? What could possibly come from this?" He answered me, "Child, this child is made PERFECT! He is my vessel! He is the exact tool being used everyday to draw others into my kingdom! Although through your natural eye you see pain, sores, disease, hopelessness, and weakness... I see comfort, beauty, health, joy, strength and compassion! This child has brought many to me! He has brought the hard hearted to be compassionate! He has brought the depressed to have joy! He has brought many that were weak and caused them to be strong! This child has brought LOVE to so many and THIS CHILD is MY CHILD! Perfectly made indeed!"

Thank you perfect wonderful sweet strangers... for loving my child.

When I feel like every day is groundhog day and I feel like I can't possibly get out out bed just to "watch my child suffer" knowing I can't help him... you all give me the strength to do so one more day.

Now, I've held off on writing this paragraph for a while now, but I have to get this off my chest. It's time for me to educate the (very few) people who have been leaving ignorant and ugly comments on my blog. Such as this little "preview":

"A real mother would let their child go if they were suffering so much. I would rather my child pass peacefully from this world in my arms instead of endure a lifetime of blisters, wounds and blindness just so I could selfishly keep him in this world for my benefit."

Newsflash, lady.... I cannot just take my child's life. What would you suggest I do? Suffocate him? Overdose him? Euthanize him like a dying cat??

I'm trying to write this without being ugly, because I know that what was said was out of ignorance and people that write or think these types of things do not fully understand our situation.

The main point is that people that write these ugly things do not have sick children. So they don't have a clue what they would do in my situation. The last thing I am doing is using Tripp's sickness for my "benefit"- I wish I didn't have this blog about my sick child. I wish I didn't have to fight everyday for his life. I wish it wasn't my life-goal to educate the world about this life-threating and cruel disease. I wish I didn't have to be "mom-inated" in contests because my child is dying. I wish he was healthy. I wish he could run and play like your kids do. But he can't.

So before you go casting stones and thinking that I'm "selfishly keeping my son alive."

Get your facts straight.

If I could take my son's place, I would.

If I could take his pain away in any way I knew how, I would.

But he's not an animal. I cannot euthanize my sick child.

So you (very few) people out there who call me selfish for "letting my child suffer"...

It's not my decision when he leaves this Earth... it is God's. But it IS my job to make him as comfortable as possible until that time comes. And I am trying my absolute hardest to do that.

I pray that God never gives you a sick child that you YEARN with every inch of your being to save.

And P.S. I forgive you for saying the ugliest things I've ever read in my life.

And I will pray for you.

But on a much brighter note, we are receiving so many ornaments that we had to get another tree!! They are flooding in. You guys are unbelievable. I just can't thank you enough.

I hope everyone has a great Thanksgiving week.

I know, along with all of you, I have MUCH to be thankful for.

Make sure you thank God for your many blessings...

I know I will.

Love,

Update

2011-11-15T18:48:00.001-06:00

We are still here (I think)!

Sorry I've been MIA, but finding the time or energy to blog lately is nearly impossible. I just wanted to give you guys a brief update- Tripp is doing about the same. He goes straight from the bed to the rocking chair and back to his bed- and that is what his days consist of. Some days will be better than others, but even on a "good" day, he stays in the rocker and will give us some smiles. He is currently on the last oral antibiotic option (the strongest oral antibiotic we could get) and its still not helping with his pseudomonas. He is literally covered in infection and yeast, which means he's constantly itching. I've started the Tagament which has helped a little, but he is still so uncomfortable. Baths are still unbearable. He is constantly running fevers and recently having more and more new blisters popping up. The area around his feeding tube is so raw and his feeding tube is leaking (going up in size won't help because it will only make the hole bigger). So there's nothing we can do- and feeding him or giving him his meds burns that area do bad that he cries and holds his belly each time. So it's been hard just getting enough nutrition in him to keep him gaining weight. But he's a fighter, I'll tell you. He's not ready to give up... He's such a ham when he's feeling okay.

On a brighter note, you guys are doing an amazing job "Trimming Tripp's Tree!" Thank you all so so much- you are SO kind! And most of you were right when you said we would need a bigger tree! I never thought we would get the response we did. You all are amazing and these ornaments are something I will treasure for the rest of my life. It is so touching to see the people across the world who love and are praying for my little man.

Please continue to keep us in your prayers. Like I said, I'm in the middle of some big decisions and I am trusting in God that He will guide me in the right direction to make the right choices. I will be giving a more "lengthy" update on what has been going on with us next week! Just please bear with me and pray really hard:)

And as always, THANK YOU all for your support. We are blessed beyond words.

P.S. If you would like to see pictures of Tripp's ornaments, I've been trying to keep up with posting them all on my Facebook page. You can see them HERE.

Love,

Because of you, EB.

2011-11-03T00:34:00.001-05:00

~~Dear~~ EB,

Because of you, my child does not know a life without pain.

A simple touch causes him pain.

Because of you, my baby does not live the life that a child should live.

Because of you, he can't even be around other kids.

We've never been on a play-date.

He has never played in the dirt.

Because of you, my TWO year old does not know what the park looks like.

Or what a bike looks like.

Or what a dog looks like.

Hell, I don't even know if he remembers what his MOMMY looks like.

Because of you, my son has never spoken a word.

He cannot say "Mommy."

Because of you, he lives with a tube in his throat... and still has trouble breathing.

When something is wrong or something hurts, he just cries big tears and can't even tell us what is wrong.

Because of you, he cries to get out of bed in the morning because he knows he has to have his diaper changed before he can rock-rock.

Because of you, ALL HE WANTS TO DO is rock-rock.

(I mean LITERALLY- that is ALL HE WANTS TO DO).

Because of you, when I say the word "bath" my child does not get excited and ask me if he can add bubbles to the water or bring toys along... instead he cries and gets extreme anxiety thinking about how painful it is.

And I am the one inflicting the pain.

Because of you, he has no idea what it is like to actually sleep through the night.

He doesn't get to "snuggle" with his Mommy before bedtime.

Or any time.

Because every touch is painful to him.

Because of you, I have a mini Pharmacy in my house.

And I could possibly build a small house out of the bandages and ointments he uses in one month.

Because of you, my son has not be outside in literally over a year.

Because of you, I cannot go swimming with my son.

I cannot take him to the zoo.

Or the movies.

Or to a friend or family member's house.

Or take him ANYWHERE for that matter.

Because of you, my child is so confused as to what "hungry" means or what "full" means. He gets fed by a tube 3 times a day on my time, not his... because he can't tell me when he's hungry.

And if he does feel hungry enough to put something in his mouth, it hurts too bad to keep eating.

Because of you, my baby has infection eating away at his raw sores.

Because of you, he never stops itching... not even after his bath.

Because of you, my child could not dress up for Halloween this year... and he has never been Trick-or-Treating.

Because of you, he spent last Halloween in the hospital, and this Halloween in the rocking chair, crying while holding his stomach in pain.

Because of you, last Christmas my son was too sick to enjoy a single toy from Santa... and this year, he will not be able to see his Christmas tree, his ornaments, or any of his presents.

That hardly makes it easy to get in the "Christmas Spirit."

But then again, you make NOTHING easy.

He won't get to help me "bake cookies" for Santa, or he won't be shaking me at 5 AM on Christmas morning to wake up so he can open his presents.

Because of you, I have a feeling of absolute helplessness and disgust in my stomach every single day- whether I am smiling or not. It never goes away.

Because of you, I secretly laugh inside when someone complains about something.

I can't help it. I try not to laugh out loud. But it's humorous the things people complain about.

Because to me, my son is the only one who needs to be complaining... but he doesn't.

He smiles.

You know why?

Because of me.

Because I am the BOMB at pretending like I don't hate you for what you have done to my baby.

My heart constantly feels like someone is giving it an "Indian burn"... twisting it in knots.

Because of you, I feel as cold as ice... just plain emotionless and heartless sometimes.

Almost like I can't understand why everyone's life can just go on while my baby is suffering.

Shouldn't the world just stop... Because of you?

Because of you, my only child's life is slowly deteriorating before my very eyes.

And because of you, there is nothing I can do about it.

But I will beat you.

My son may or may not have the chance to beat you,

but I will.

You might think that you can win, but you can't.

I will not stop until the mention of your name is known across the world.

Until the doctors hear of you and say: "Psssh, EB?"

"That's nothing, we can fix that!"

Because of you, it is my goal that no child should suffer like mine does.

Because NO child deserves this pain.

Because NO parent should have to be making the decisions that I am making.

And NO life should be taken,

BECAUSE OF YOU, EB.

~~Love~~, Good Riddance,

Behind the scenes of EB.

2011-10-31T12:58:00.000-05:00

I can't believe EB Awareness Week is over already. I sure dropped the ball this week, but NOT YOU GUYS! You have all been so amazing in helping us spread the word about EB. I hope that it doesn't end here and that you will all still continue to be advocates for Tripp and for all the people living with EB.

I haven't blogged about what's been going on with Tripp because it's been kind of rough around here, but I promise I will soon. He had a really tough week in the beginning, but the past 2 days have been a little better. But in honor of EB Awareness Week, I want to this post to focus on people who have helped us and other families through this difficult journey.

I want to take the time to recognize these people/foundations that sometimes go "unnoticed" in the EB world. These are 3 women who are very dear to my heart- and I've only had the honor of meeting one of them, but one day I will meet the other two... I am positive. These women may often get caught behind the scene, but without them... many EB families would not receive the support and care that they need and deserve. These are people that deserve recognition for their hard work and dedication to the EB community.

Mrs. Laurie Sterner and

The Butterfly Fund:

http://www.thebutterflyfund.org

Laurie Sterner~Founder, Executive Director

Allie Sterner~President

Michael Sterner~Vice President, Secretary

Board Members~ Steve Thrasher, Jim Fewell, Liana Fewell, Jannette Braa, Karen Battaglia, Claire Murray

The Butterfly Fund is dedicated to helping EB families and now also families who have a child diagnosed with any serious life altering disease.

100% of the proceeds of their events & donations go directly to family assistance in the form of financial aid, food, housing, clothing & care.

Absolutely NO salaries are paid.

They are not federally funded or grant funded, so the amount of funds relies solely on donations from kind businesses and individuals.

The Butterfly Fund does not discriminate. Anyone and everyone who has a child with a serious illness may inquire with them.

100% of the money they raise at their Annual event- The Butterfly Ball, gets allocated to as many families as there is money.

They give every bit of the profit away.

This fund has reached out to us and is still reaching out to us on MANY occasions.

Here are some examples of the services they have done:

-They provide Kicky Pants clothing for many families with EB (they've given Tripp MANY of his shirts- which are VERY expensive and SUPER awesome!)

-For 4 years, they have been paying a large share of the rent & living expenses for a local young man who has EB and they hold a special annual event just for him…sometimes more than once.

-They have bought much needed baby items for a family who's baby was born with MS

-Have given gift cards to a family whose baby was born with CP

-Sponsored a companion dog for a young girl with EB

-They bought a car and other items for a young single Mother whose son has EB

-Have given funds to approximately 15 families, with an array of catastrophic illnesses.

-They sponsored Aubrey’s 5K and Tim Ringgold’s various events and fundraisers

-They sponsored a young boy in Sonoma who was in a serious car accident/volunteered at his event

-Helped purchase bandages for Raul, who has EB and was living in an orphanage

-They sponsored a young man who is paralyzed and has brain damage

-They've helped a family financially who had a young boy with a brain infection

-They've donated Art supplies to Camp Wonder

-They honor 2 families every year at their annual Butterfly Ball – tell their story and if need be, help them financially. These are families who have or had a child with a catastrophic illness or event.

*1st Annual Butterfly Ball*

Cody Cordellos- a young man who has no family support live a better life.

The Shiery Family- 5 year old daughter, Rachel died from Brain Cancer

*2nd Annual Butterfly Ball*

The Spaulding Family: honored Garrett who has EB

Anim Vinson Family- Honored Her son William who has EB

*And this years honorees*

The Pop Family who lost their daughter Elle last year to EB

And The Kragler Family whose newborn daughter's delivery at birth caused lack of oxygen and she now has CP. She is 3 years old and cannot walk or talk.

-They attend other fundraisers for children and support them financially

-They have helped the Cannell Family in the adoption of their 2 boys by raising awareness and funds.

-They raise awareness for EB any chance they get, including having a booth at very well attended Art shows and events.

-Mrs. Laurie's daughter, Allie owns a retail children’s store and she is constantly having items for sale that raise awareness for The Butterfly Fund and EB at the same time.

-They buy Christmas presents for families who have children with catastrophic illnesses that otherwise could not afford them!

Please visit their website and see how this family of angels work so hard to help other families who are in need. They don't get enough recognition for what they do.

Thank you Mrs. Laurie, Allie, Mr. Michael, and all who work hard to make this fund possible.

Mrs. Leslie Radar

I will never in my lifetime forget Leslie Radar.

She was the first mom (and really the first "EB experienced" person) that I spoke with after Tripp was born. Her daughter, Lauren lost her battle with Junctional EB at just 7 months. She was my support when I received the news that Tripp was diagnosed with "Junctional" EB.

She was so helpful, so brave, so understanding, and such a great listener.

She helped me to get started and get on my feet with everything that I needed to properly care for Tripp.

She is another amazing person that I have yet to meet face to face.

After her sweet daughter Lauren received her angel wings, Leslie started the New Family Advocate Program with DebRA. She joined the DebRA Board of Directors and she organized the Wound Care Clearing House in her own home (but it is now being run through DebRA office). Then, she joined Hollister Wound Care as the Coordinator of EB affairs. Hollister is very compassionate and supporting of the EB community. They are always striving to make wound care products that improve quality of life by having comfortable dressing that are virtually pain free to remove. Leslie makes personal visits to the homes of families with new EB babies. She continues to help EB families with all wound care product questions, insurance issues, and tips and suggestions on how to use products. She informs families of EB friendly shoes and clothing, and assists new families to network with other EB families and social media sites.

Leslie likes to be "behind the scenes." But I think she deserves a tremendous amount of recognition. There is NO better support than a mom who has been through the exact situation that you are in. Leslie has dedicated her life to helping other EB families. Thank God for people like her who use their experiences to help and educate others.

Thank you, Leslie. You're my hero.

Ms. Geri Kelly-Mancuso

Geri is the EB Nurse Educator for DebRA of America.

Ms. Geri will forever hold a very special place in my heart. She was there from day one (she talked to my dad a lot in the beginning when I was in "shock,") but then she and I communicated on a regular basis. She sent us out care-packages right away when Tripp was born. She was always available when we needed her and she actually came to our house for the new patient visit when Tripp was about a month old (Mrs. Leslie Radar wasn't able to at the time) and spent the day with us, talking and sharing information that we needed to know. Geri is essential in the EB community. She is very knowledgable about EB and will work hard in every way possible to help in whatever way she can. Whether it be communicating with doctors/patients across the world or just lending an ear when you've had one of "those" days. She is amazing and will be a friend of mine for the rest of my life.

Thank you to EVERYONE who works "behind the scene" or not for our family and all the EB families. I know I speak for all of us when I say that we truly appreciate what you guys do.

We are blessed to have you ALL in our lives.

Love,

A surprise from our favorite furry friend, ELMO!

2011-10-25T20:35:00.003-05:00

Elmo wrote Tripp another song... HIS VERY OWN personalized SONG.

I'm such a proud Momma,

and just when I think that I couldn't love Elmo (Kevin Clash:) any more- I receive THIS CD in the mail today--

And here is the song-

I added the pictures because I didn't know how else to share it from a CD other than creating a movie/slideshow.

Tell me that is not the sweetest thing you've ever heard?

He is playing the drums with my little man- and then pausing so Tripp can drum to the beat!

Amazing. Tripp loves it- but it's going to take him a few days to be able to play along, I think:)

He's good, but not that good! So be patient and hopefully I can catch him on video drumming along with ELMO to his VERY OWN song!

We love you, Elmo. You are the BEST.

I want to send a very very special thank you as well to Elmo's assistant, Kimi for keeping contact with us and always trying to make our days special and also JP, Katherine, Ralph, and Louis for putting the cd together for us- the graphics, lyrics, etc! You guys on Sesame Street are the BEST:)

I wish Tripp could meet you all and drum for you!

Oh and don't miss my new post below this one!!

Two posts in one day?! Record.

Love,

Trimming Tripp's Tree and Personalizedfree.com

2011-10-25T12:01:00.002-05:00

I received an email the other day from the Public Relations Consultant from the website

www.personalizedfree.com

and she made us a very thoughtful offer. She said that their company would be willing to donate 10% of their proceeds from now until CHRISTMAS to DebRA when you place your order using the promo code: TRIPP.

Their website is FULL of thousands of personalized Christmas ornaments and pictures. Practically any theme you can imagine: Family, 1st Christmas, Occupations, Pets, Hobbies, Sports, etc. They are reasonably priced and ship worldwide!!

They also recognized Tripp and me on their blog for the website, helping us bring awareness to EB! I am going to post their link on my sidebar, so that you can easily access their website if you choose to help!

Or you can visit their site HERE and the blog they posted about us HERE.

I am so grateful to them and I wanted to work hard to be able to give this company business, also raise money for DebRA... BUT ALSO... I'm going to be a little bit selfish, too (GASP). I can't help it. Here is a proposal:

My mom, Christie Zink (our superwoman advocate and supporter from Minnesota) and I, came up with what I think is a FABULOUS idea. I hope you guys will agree.

This year for Christmas, we want YOU to

"Trim Tripp's Tree."

We are going to put a Christmas Tree behind Tripp's rocking chair in the corner of our living room this year. I want to decorate it with ornaments from everyone (no matter where you are) that follows our story and prays for my little Drummer Boy. These ornaments will be something that I will TREASURE every single year, no matter what happens in the future. Something that will have SO much meaning and will be so very special to me. So I can always remember all of the support that we've had through everything.

You all know that it's hard for me to ask for something for myself- but I figured that this would be the perfect opportunity to raise money for DebRA, give business to a company that wants to help us, and also make Tripp's Christmas tree this year the most special Christmas tree in the world.

You can put your name, your state, city, or a special message to Tripp if you'd like:)

Now, you DO NOT have to buy an ornament from personalizedfree.com if you do not want to. You can order from anywhere you want OR you can just make a homemade ornament!! No matter where it comes from, it will be SO special to us!

I can't wait to share pictures of our tree with you all this year!!

If you want to join in the ornament fun, you can mail them to us at:

18669 Sisters Road

Ponchatoula, LA 70454

Ok, so I hope no one thinks I'm being pushy for asking this- I mean, you guys have already gone above and beyond for us in SO many ways. I just wanted to throw this idea out there, in case anyone wanted to participate- and Christie has also created a Facebook page event called "Trimming Tripp's Tree."

You can visit the page HERE.

We love you all!

Thank you again for being the best support team and prayer warriors we could EVER ask for:)

Love,

Welcome EB Awareness Week!!

2011-10-24T11:24:00.002-05:00

So I'm a day early, but I'm way too excited to wait.

So are you ready to Be Part of the Cure??

This week is not just about Tripp. It's about everyone who is living a life with EB and their loved ones.
All of you know how sad I feel for Tripp and how much I wish I could take this from him, but what about the others? The children, teens, and adults living with EB who ARE actually able to "go out into the world" and have to function in an every day life with EB. Maybe the ones who get stared at, ridiculed, and get treated differently because of the way they look. Those who want to stop the person who stares at them and try to explain their world of pain- but never have the chance to because no one cares enough to take the time to listen.

I want that to change. And in all honesty- not only for EB- but for every disease and disorder out there. Who are we to judge? Who are we to stare? Just because we are healthy, does that mean we are perfect? Does that give us the right to think that we are better than anyone else?

I'll be honest, I often times think that we have the worst of the "EB" world... Because of the fact that Tripp has suffered through every possible affect of this disease- the trach, the feeding tube, the corneal abrasions and eventually losing his vision, the mouth sores, constant infections, etc etc. But when I really stop and think about other kids and adults living with EB, I know that every one of them is carrying a horrifying cross, each in a different way. I often wonder if we are blessed that Tripp doesn't have to worry about what others think about him- because he doesn't know better yet (not saying that will never happen, but at this moment). I think about the school-aged kids who live with this disease every day and have to worry about what people think every time they walk out of the house. Or the adults who have to function in the "work" world and in the "real" cruel and judgmental world. Do those people have a community of support and people rallying for them as well? If not, can you imagine their pain?

This is the worst disease in the world- and no person, child or adult, should have to suffer like this- physically, mentally, or emotionally.

I want every person in the world to know what "EB" is. I want them to see someone with EB and say, "God bless you," or "Can I help you?" instead of sitting back and staring. We all need to be educated.

Just like every disease, these children and adults did not choose this- they were chosen... whether they wanted it or not. And it's something that currently has no cure and is not going away. What are we going to do about that?

So please don't sit back (like I did before Tripp) and think that you are exempt from having a baby with a disease, a defect, or a disorder. No one is exempt. And if it didn't happen to you- congratulations. But what if it was to happen to your child's child? Or a best friend's child, or just someone you know? It would be devastating, right?

Our family has been abundantly blessed with support, kind thoughts, prayers, and fundraising. We are forever grateful for this- more than I will ever be able to explain. So since we have been blessed beyond words, it's my job to bless others- my job to help others. Those who don't have a voice. Those who are living with EB who don't have the support that we have. Those who want people to know WHY they have sores and bandages all over their body.

I won't stop- not this week, this month, this year, or in my lifetime- spreading the word about this horrible disease and doing what I can to make the lives of these children and adults a little easier. I'll do it for Tripp, for those who have lost their precious lives too soon, for every single person currently living with EB, and for every child that will be born with EB in the future.

Whether they are fighting to survive just one more day physically, or fighting to survive one more day mentally. Every one of these children and adults deserve to be heard and deserve their voice to be heard. So please... Find someone who will listen- tell them about EB- and tell them to tell someone else about EB.

And no matter what happens, I will keep fighting. And I will encourage you to fight with me. I encourage you to be a part of something bigger, something worth bragging about. Something that makes you feel good. Help us... help all of those with EB. Be a voice for someone who doesn't have one, for someone who never had the chance to have one, or for someone who is aching for the world to recognize them for who they are and not "what's all over their skin."

How can you help?
"EB" a part of the Cure by joining the Facebook page HERE.
Create your own awareness page.
Post about EB on your Facebook page or blog.

Share the awareness video at the end of this post.
Educate yourself about EB (Debra.org is a great way).
Simply tell another person about EB.
Educate your children about EB so that they will be able to recognize it.

And like I said, we have been blessed beyond comprehension- and Tripp has obviously helped spread the word about EB in his two and a half years. So let's continue... Let's fight for those with EB... Whether they are close in your hometown, across the world, simplex, Junctional, dystrophic, newborns, children, or adults... They ALL deserve this. Please help me give those living with EB a voice and a chance for a cure.

I have never once asked any of you for money, but this was too brilliant to pass up- and there is no better time than now.

I know a lot of you know about the Bone Marrow Transplants that are going on in Minnesota, and how dangerous they were for babies under 1-2 years old. These transplants took the life of some of these children, whose parents were hoping for the best. Sweet Bella was one of those children. Her parents, Tim and Angelique, are working hard with the team of doctors in Minnesota, trying to raise much needed funds through PUCK (Pioneering Unique Cures for Kids).
The doctors in Minnesota have changed the transplant regimen in the past year. They have made it safer for these children and for these parents who want a better quality of life for their children. There is still no cure. But they are working. They are trying. These doctors are fighting for our kids. You can visit this website to find out more about this research:

www.puckfund.org
And here is what Tim proposed to me for this year's EB Awareness Week:

A Text for Tripp

I thought this was awesome. I mean, how many of us text like crazy people? I know I do!! It's SO easy- all you do is text TRIPP to 50555 and a donation of $10 will be added to your wireless bill going straight toward EB Research through the Minnesota Medical Foundation at the University of Minnesota. Cool, right? $10 a person can go a long way!! And you don't even have to take the time to pull out a credit card- it just charges straight to your wireless bill and does the work for you!! Brilliant, right? Let's do this!!

Text Tripp to 50555 and help us END EB NOW!

And then SHARE this video as much as you can to help us spread awareness about these beautiful children!

Love,

Dragon Mom

2011-10-20T10:59:00.000-05:00

I've been getting several messages about an article in The New York Times titled "Notes from a Dragon Mom," so I had to share. I could not have said it better myself. Our situations are different but oh, so similar. I wish I could hug this Dragon mom and thank her for giving us moms a voice.

Please read her story HERE.

Update, Reader's Digest, and EB Awareness

2011-10-18T12:55:00.000-05:00

A lot has happened since the last time I posted, so I will do my best to catch you guys up.

Since the night that I posted all of those videos, Tripp has literally had a good day, then a bad day, then a good day... etc. I'm in the process (along with Dr. D and Trea, our super fabulous pharmacist) of trying to switch some of his medicines. Within the past week, I've tried some new antihistamines to help with his itching. O my GOODNESS, the itching has been horrible. This poor child just never ever gets a break. So, the antihistamines are brutal. He was literally gasping for air about 30 minutes after I gave him the new medicine and it lasted almost all night long. It's like it dried him up completely so that he couldn't breathe. That was a horrible night. So I stopped all of the antihistamines altogether. He's on a yeast medicine and a fungal medicine in addition to trying every topical itch cream that there is. The itching has just started to be an issue this past month, and from talking to other EB moms or adults with EB... it's something that is ongoing and nothing really helps. Great.

So as far as the skin... the wound cultures came back growing (I'll give you one guess)....PSEUDOMONAS. And guess what? There are no oral antibiotics left that treat it. So this was my decision. I said I would try Rocephin injections (the pseudomonas was sensitive to that) once and see if they could bring his white count down enough to try the G-CSF. SO- as of this morning, he's gotten 2 injections of Rocephin IM (Intramuscular). They are only once a day- Thank GOD (because that's horrible enough) and it's for 7 days. I'm giving the injections myself... something that NO MOTHER should have to do, but I wouldn't want any one but myself doing it. They are rough- thick and 2 mls of fluid going into rotating thighs each day. I'm glad we are trying them, but this is not something that I'm going to do again. SO PLEASE pray that these injections will drop his blood counts so that we can try this G-CSF at least ONCE, so that maybe it will heal something and decrease his constant infections. That is my goal. Will will hopefully be re-drawing his blood work on Thursday or Friday to re-check his counts.

Oh, and I forgot to mention the diarrhea, bellyache, the bruising of the site, and the soreness that come along with these injections. This child is a saint. I can't stress that enough.

Ok, so now for the shout out to my super awesome followers. There is a contest going on for Reader's Digest. If you win, you get your story published!! How awesome would that be for EB Awareness? Right now, our story is in 2nd place- and all of my Facebook friends have been so awesome about spreading the word to vote for us! Thank you so much to all who have voted. You can vote EVERY DAY from EVERY electronic device (computer, smartphone, iPad, etc). So please, if you think about it, take a minute to vote so we can spread the word about EB in Reader's Digest! It would be a great prize with EB Awareness Week coming up!

You can click HERE to vote!

Speaking of EB Awareness, I thought of an idea to help spread the word next week. Since Halloween is coming up and everyone will be Trick-or-Treating, I created a flyer that can be handed out! You can either hand it to the kids (or maybe parents) of the Trick-or-Treaters that come to your house OR you can take the flyers with you when you go Trick-or-Treating and pass them out to anyone you see! This way, we can "Trick-or-Treat for Tripp" across the country:) Here is the flyer if you're interested:

I hope it works to where you can save it and print it out from the blog. If not, let me know and I'll find a new way to share it:)

I hope everyone has a great week!

Love,

My Birthday Poem.

2011-10-14T10:02:00.001-05:00

This is a poem that one of my Kindergarden teachers, Mrs. Elaine Landry, wrote for me on my birthday.

Thank you so much, Mrs. Landry. I will treasure it forever.

My Dear Mommy,

On May 14, 2009, you gave birth to a baby boy

You named me Tripp, your little bundle of joy.

I thank God for choosing, "you" to be my mother

I would not have wanted, not any one other.

When you brought me home, that long awaited day

We had no idea, what was headed our way.

You took me to doctors, both far and near

They said I had EB, and would not live a year.

You proved them wrong, with your faith from above

I am still here, because of your "love."

You are doing all you can, and so much more

To take care of me, and all my body sores.

You stay awake both day and night

Just to make sure, your "Bubba" is alright.

What other kid, has a McDonald's playground at home

Or a New Orleans Saints football, from the Superdome?

I want to tell, all my family and friends everywhere

I love them so much, and thanks for their prayers.

Thanks to my doctors, nurses and all who help you and I

I wish I could see each one in person, just to say hi.

If in your sweet dreams, you hear music or drums

Then surly you know, who it's coming from.

It may be an Elmo tune, or the LSU fight song

You know how I love, when you sing along.

I love you Mommy, with my arms spread apart

If only I could show you, the love inside my heart.

You know how kids, always wish for a toy

My wish is to have longer, just to be your Angel boy.

You are right to say, that this was God's plan

So please keep rocking me, as long as you can.

Thank my sweet Grammy, for always being there

Her devotion is like yours, is so very rare.

Happy Birthday Mommy, you are so dear to me

I am lucky to have, the greatest Mommy, you see.

You want to know, if God is speaking to me

In your faith filled heart, you know He has to be.

So Mommy be happy today, and say your favorite prayer

For God said to tell you, you will get your "Pinky Swear."

Love, Your Bubba

-Thessalonians 5:18

2011-10-11T11:30:00.002-05:00

"In all circumstances give thanks, for this is the will of God for you in Christ Jesus."

Thank you, God, for the best couple of hours in a very long time.

If it happens again tomorrow, I will give thanks.

If it doesn't... I will STILL give thanks.

This child is truly amazing.

He is my HERO.

Riding Papa's Horsey

Tripp's song

Yawns :)

Love,

Picture Post.

2011-10-10T23:04:00.002-05:00

SURPRISE!

My wonderful friend Mandy surprised me with an early birthday present- MY SISTER!

She must have known I've been missing her bad:) So she flew her in for a short weekend!

North Dakota is just WAY too far! I was so surprised that I'm pretty sure I screamed a little and then cried when I saw her.

I got to spend the whole weekend with my family, friends, and the people I love the most.

Thanks again Mandy and Britt for pulling that off- I know flying standby really stinks!:)

It was a super great birthday surprise!

So, my sister just recently bought a new camera and has been taking some photography classes just as a hobby. She was so excited to finally be able to take some pictures of Tripp. And boy, did Tripp give Nanny a treat for the weekend... he really had a pretty good weekend, overall. He stood up for her about 3-4 times, which lately is a whole lot!

I think they came out great... Pictures I will treasure forever!

Update on little man's transfusion:

We are waiting for approval from the hospital to be able to do the transfusion at home.

Please say some extra prayers that we can make this happen.

Also, I think we are battling an infection that can no longer be treated with oral antibiotics.

I think some tough decisions are coming my way soon.

Please pray that I make the right ones.

Thank you all for your KIND words and so much encouragement!

Love,

Update, Babble Award, and some SUPER CUTE pictures I can only chalk up to the power of PRAYER!

2011-10-06T00:21:00.001-05:00

So where shall I begin?

I think I left off in the post before last about his previous lab work being too high to be able to start the G-CSF, and that we needed to find the source of Tripp's infection and treat it (HAHA) before we could get his white blood cell count down to be able to start this drug.

SO... I mentioned last week that we started him on the one oral antibiotic that was left that we THOUGHT could still treat one type of his pseudomonas. Well, about 3-4 days ago (after he had been on this antibiotic for about 3 days already)... his fever was only getting higher and he was really lethargic and not moving around much at all. He looked awful.

So Dr. Defusco decided that we needed to redraw his blood work- CBC, CMP, and blood cultures.

Dr. D texted our home health nurse, Kati Corso, and she was here the next day to draw his blood.

Let me tell you a little bit about Tripp's nurse, Kati, because I truly believe that God sends the right people into our lives at the right time. Kati works in home health (we are currently the only family she has on the Northshore- she lives in Destrehan) and she also works nights in the PICU at Children's hospital. She is so thoughtful, so selfless, and a DARN good nurse. Since the very first day she came, we fell in love with her, and I think she fell in love with Tripp, too:) Kati has been a true blessing to us by being able to come whenever we need her (I know she would never tell me if she was just plain exhausted from working the night before)... Dr. D or I can text her, and she always makes plans to come out as quick as she can. We are so lucky to have an AWESOME nurse, who also cares!!

I want to tell you, too, that in her spare time (ha), Kati is organizing the "Skip for Tripp" 5K Run/Walk in Destrehan next Saturday, October 15th. You can visit the event page on Facebook HERE. I know she's worked really hard doing this, and I truly appreciate her putting this together for us. We love you, Kati:)

So, his blood work... Kati came out to draw it on Monday. Tripp was SO GOOD for this. It made my heart melt. He barely even cried and just laid on the table so still. Such an angel. And then on Tuesday morning, the one and only Dr. Defusco came to the house again to discuss where we would go from here. We got the blood work results that morning before she got here, so we had a chance to go over them. His white blood cells were through the roof- way higher than last time. This means no G-CSF (at least not any time soon- because G-CSF stimulates white blood cell production- and with such a high amount already, he could have a stroke) and it also means he is obviously fighting an infection. His RED blood cells were VERY low. Which isn't good either- this means he's very anemic. It's no wonder he doesn't want to get up and play or move around- he's as weak as a cat (yes, Grammy, I stole your line:)

Here's what our brains came up with- a blood transfusion. Yay.

I've thought about these before- obviously. But it just didn't seem like a great idea to put him in the hospital and have to find an IV site, while of course risking him catching 45 other things while in the hospital. So it kind of got put on the back-burner. And to be honest, his red blood cells were always "lower" than normal- but never really low enough to need a transfusion... until now.

The only way I would do this, though, is if we could do it here at the house. And the only way we can do it here at the house is if we have a super awesome doctor and a super awesome nurse who would be willing to stay for 4 hours to let the transfusion run. We are pretty lucky that we have both of those, RIGHT? Thank you, Jesus.

So, Dr. D is in the process of checking to make sure we already have a type and match on him so we can get this ball rolling. I, of course, will probably have to sedate him to be able to do this... but if it can give him just a little "boost," then it will be worth it.

The Babble Award.

AKA, The most special honor I've ever received in my whole life.

Our story made the front page of Babble.com:

I was interviewed for this story by one of Babble's writers, Christina Couch. She was so kind. I actually cried on the phone with her. I felt so bad. I had to answer a lot of questions and talk about things that I haven't talked about in a very long time, and she was so sweet and understanding. I am truly honored to have our story posted on the front web page! This is so great for EB Awareness. Thank you again to everyone at Babble.com for making this possible and for all of your kind words in your e-mails to me this week! And of course, to everyone who voted for me:)

Please check out the story HERE.

Speaking of EB Awareness... I was in tears last night when I received an e-mail from another EB mom. She went on to say about how "down" she had been about her son having EB (the feelings of guilt, hopelessness, etc). But that she had "happened" upon my blog and it had helped her to get through some of her tougher times. She then told me that the other day a stranger came up to HER in public- and mentioned the word "EB"- to HER- before SHE DID! She said the woman smiled at her little boy, she didn't look at him "funny" or it wasn't "awkward." She then said the lady told her that she had read my blog and was aware of EB and what is was.

Tell me this is not...

A. M. A. Z. I. N. G.

This is what I mean about spreading awareness. Things like this are happening because all of YOU are helping us to spread awareness to this horrible disease. If ONE less child gets ridiculed or "stared" at because we can educate people about EB, then it is worth it!

That right there, my friends, puts the biggest smile on my face.

And now to the "super cute pictures that I can only chalk up to the power of PRAYER."

In the past 2 days, Tripp seems to have felt a little bit better. After Dr. D left yesterday, I went back up on his Acyclovir (the anti-viral drug)- so maybe he had that going on again and needed a higher dose? Though I did write a post insinuating that we could use some prayers, too:)... so I definitely think that all of the prayers give us a little bit better days (drugs or no drugs). He's still not getting up to play and is VERY weak, pale, and running fevers. But he has been in a better mood and giving some super cute smiles in the rocking chair! He will probably have the worst day EVER tomorrow because I'm bragging on him, but o well... I couldn't pass up sharing a few pictures!

These are all "smiles" by the way:) Mommy's angel.

And introducing... Our new rocking chair!!!

Our old one had WAY too many miles on it, no butt cushion left, and WD-40 didn't even help the "squeaks." So it was time to upgrade. I LOVE IT. It swivels, glides, and reclines! It's so comfy and has a lot more room for my growing boy:) Well, he's at least growing in length!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you. "

-Matthew 17:20

PLEASE continue to pray and have faith in Tripp's miracle.

We have to TRULY BELIEVE that it's possible.

I know it is.

Love,

Letters from... Me.

2011-10-03T01:03:00.002-05:00

Dear Tripp,

I'm sorry these past few days have been so rough, bub. It's not fair that you have to hurt. It's not fair that you can't do the things that normal kids get to do, or that you have to take a bath in tremendous amounts of pain with raw, open sores all over your body. It's not fair that every single breath you breathe is like work and a struggle to stay alive. It's not fair that as you lay next to me right now, you're on so much medicine but yet you are itching all over and completely miserable trying to sleep. You never catch a break. A good day for you would be someone's worst nightmare. I'm praying hard, buddy, that I make the right decisions coming up soon. I pray that we can find out what's going on with you (this time) and that it's something that we can fix (temporarily). But if I'm going to be honest with you... I'm praying for a miracle. Because we are getting to the point where your sores and infections are taking over and there's not many options left to treat them without sticking you and putting you in the hospital. I said I wasn't going to do that to you. But that will be the hardest decision of my life. I hope you'll help me through it. You're so brave, bub.

I love you.

Dear Mom,

Oh Momma. I'm so selfish sometimes. Like tonight when bath was going so horrible and I "shut down." I got quiet, I got short, and I got moody. But you, angel mother... you take it all in stride. You're sitting there, watching your daughter in pain AND your only grandson in pain. Probably watching every word you want to say because my bratty self might jump down your throat (even though I learn that from you:) And I never ask if you're okay. I'm sorry. I know I get my strength from you, you superwoman... but you don't have to always be strong for us, you know? I'm the luckiest girl in the world to have you. You're my strength when I have none left, you're my brain when mine is just plain "broken," and you give me hope when I'm ready to give in and give up. I am who I am today because of you- because of what you've instilled in me and because of the example you have shown me. I am so proud to call you my mom, but also proud to call you my very best friend.

Dear Dr. Defusco,

I know that when we had to choose a pediatrician on the south shore, that God led me right into your office. You know why? Because we weren't even supposed to see you that very first day. I had called to make the appointment with another doctor, but she wasn't in that day, so they gave us your appointment. And after I met you, I knew that you were ours and that we would never switch pediatricians again. I could tell the very first day that you love your patients and that your heart is in your work (and I truly mean that). I could never do what I am doing without you. You put your whole heart and soul into helping Tripp from day one, and from the bottom of my heart I thank you. I appreciate you. And I hope every doctor in the world can learn from your devotion. You never get frustrated with my constant calls or texts (at least you don't show it to me:). I know you feel helpless just like I do... and I know that this disease is not what you are used to dealing with, because you are a pediatrician- not a hospice doctor, not a pain management doctor, not a hematologist. But do you play all of these roles and more for Tripp? Yes... and you play them well. It has been such a blessing to me not to have to deal with a million different doctors- because YOU take care of what needs to be taken care of (with the exception of our fabulous ENT, Dr. Rodriguez). You communicate with the other doctors so I don't have to. I just want you to know that you are more than a doctor to us... you are a friend. And pretty much an angel.

No matter what happens in the future, you are a HUGE part of the reason I got to see my son turn 2 years old this year. Thank you for believing. Thank you for your persistence. Thank you for encouraging me. And thank you for never giving up on my son.

Dear all of you precious souls who support us,

You know who you are. And I'll be honest... do I get time to respond back to every message or e-mail? No. But do I read every single message and e-mail I receive?... YES. They bring me hope and encouragement when I'm having a rough time. They make me feel like I'm not in this alone. The amount of support we have received is indescribable. I am not sure why we were so fortunate and blessed with all of this, but I know that I thank God every day for the people He has brought into our lives. Thank you all for standing by me through the ups and the downs. Whether Tripp is thriving and standing up to play, or whether he is sick and totally immobile, we always have people who are supporting us, praying, and believing in a miracle. Please know how much that means to me. It's hard to thank you each individually... so thank YOU reading this... for reaching out to us, following our story, and praying for my little Bubba.

Dear God,

I hope you didn't think I was going to give you a break tonight, did you? I need you tonight more than ever. I know that you know pain, God. You sent yourself in the form of man to Earth to be crucified- the worst possible form of death (other than EB... just kidding...kind of). You know Tripp is suffering- just like you suffered. Sometimes he reminds me of you, God... when he cries and coughs really hard and all of his little scabs start to bleed and there are lines of blood just running down his face. I think of you and the crown of thorns stuck into your head. And how many times you were beaten and tortured. I'm trying, God. I'm trying so hard to understand what Tripp's purpose is. Or more than that, HOW LONG his purpose is. I know he's brought people back to prayer, back to church, helped us to love our children more, and appreciate little things that we never appreciated before... but he's miserable, God. My sweet boy is tired. And I know that I'm not telling you anything that you don't know... Heck, maybe you and Tripp communicate on a daily basis and Tripp knows exactly how long you expect him here on Earth. That's really cute how you guys are keeping me out of the loop, though... Probably joking together and saying, "how many times do you think she's going to ask for her miracle today?" No, but really... I trust you, God, I really do. And I truly believe that you know what you are doing, so...

"When I am afraid, I will trust in You."

-Psalm 56:3

I'm afraid. I'm sad. I'm anxious.

But I'm trusting.

Sweet Jesus, what I wouldn't give to go back to this day and be able to look him in those beautiful brown eyes again...

Love,

Hello Hello...

2011-09-30T01:33:00.003-05:00

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

2011-09-24T14:16:00.001-05:00

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...

2011-09-22T01:07:00.002-05:00

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...

2011-09-13T00:20:00.000-05:00

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.

2011-09-07T13:33:00.001-05:00

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,

Drummer Boy

2011-08-29T13:43:00.000-05:00

“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

2011-08-16T01:20:00.000-05:00

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...

2011-08-15T18:24:00.001-05:00

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...

2011-08-04T00:58:00.000-05:00

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,

My miracle.

2011-07-31T11:50:00.001-05:00

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...

Love,