Just call me Ms. Bookworm.

Tripp man is still the Diflucan for yeast, and also now on Clindamycin for his mouth.  Though I just think his mouth is beyond help because it doesn't seem to be working.  Within the past few days, he's had some trouble with his trach.  Not yet sure if it's a sore underneath the trach and a swollen airway again, or if it's just a cold or resp. infection with thick secretions.  But we are back on breathing treatments and back on the high dose of steriods.  He's just a TROOPER.  Plain and simple.  I don't know how else to put it.  It is beyond my understanding how this little boy can endure all that he does.  He's nothing short of a little saint.

So my super fabulous sister bought and mailed me a Kindle (just becuase) this week.  I thought that was pretty darn sweet of her.  Now, if you know me... you know that I have read approximately TWO books in my entire life.  One that I read last week- "Heaven is For Real" and probably another one I've read during high school that I had to read.  That's about it.  I have always hated to read.  But now, You can practically call Ms. Bookworm.  I joked with my mom today about not hearing something she said because I must have been "caught up in my book."  The joke in the house is always that I'm the "less intelligent" of the kids... just because I was always MUCH more interested in my "social life" than school or any type of learning.  So for me to even want to read a book is a big deal... haha.  But I LOVE my new Kindle.  THANKS SIS.  You're the best!  And after reading the book "Heaven is For Real" and the one I'm currently reading "The Boy that went to Heaven," I have A LOT to say.  So watch out faithful blog readers... I am FULL of things to blog about now.  

So first of all, if you haven't read the book "Heaven is For Real," get up, get dressed, go get it at the bookstore or buy it on your Kindle (iBooks, Nook, whatever) and READ IT!!  Oh my goodness, it is amazing... and I can't stop thinking about it.  I don't only love it because I have a special boy who could possibly beat me in seeing Jesus, but because it gave me a whole new perspective of what lies ahead for all of us.  Of course I believed in heaven before... and of course I've "learned in school" and read in the Bible about what heaven might be like.  But to hear what Jesus is like and what heaven is like coming from the mouth of a five year old- puts a whole new perspective on things for me. 

 God knows exactly what our lives are going to entail before we are even born.  I truly believe that.  God knew that we were going to have Tripp and that he was going to have EB.  He also knew that Tripp would touch countless lives of total strangers.  He also knew that we would have the greatest support system that there is.  He knew that placing Tripp into my hands was the right choice, not only because I would devot my life to him, but also that we have parents and family that would devot their lives to him. And not stopping there- we have a whole community who has stepped up and who is showing us nothing but support and love and the true meaning of "doing for others."  God knew ALL of this.  That is exactly what I was missing in my life before Tripp was born- FAITH and TRUST in God.  Yes, I would pray... but I was praying for things beyond my control and praying the totally wrong way.    

Every page in these two books screams at me: "Tripp was chosen." "You were chosen." "Have faith that God knows exactly what he's doing." "And TRUST that miracles DO HAPPEN." And even more now, I know that whatever happens was already in God's Will for us and for Tripp.  He already knows what's  going to happen.  These two books stress the power of support from the community- I think that's another reason I can relate so well.  They talk about the power of prayer and the importance of "prayer in numbers."  I know that Tripp has touched lives across the world and I know that he has people all over the world who are praying for him and following our story.  So we can't give up now.  

As each day in Tripp's life gets a little worse and he wakes up with new sores and new issues... I know that I need to focus on the positive of this whole situation.  But as a mother, that is getting harder and harder as I watch my son slipping further away.  There is no words to explain the feeling of gradually (but quickly) watching your son go blind right before your eyes- and there is nothing you can do about it.  Or witnessing the PAIN he is in when he wakes up in the morning or during a bath.  But I try to keep focus- and what helps me the most is knowing that not only does God know what He's doing with our lives, but He also sent HIS only son to Earth, to be tortured in the worst way possible- crucified on a cross- and to die for OUR sins. And Jesus' Mother watched as her only son suffered tremendously, was ridiculed, and was hung on the cross.  She knew that He would die and I'm almost certain that no matter waht, that wasn't easy for her- but she also knew that He would rise again on the 3rd day and bring salvation to the entire world.  Is that what got her through it?  It was our fault (through Adam and Eve) that the world was condemed.  And God gave us a second chance when he brought his son back to Earth.  When Jesus was hanging on the cross, took his last sip of wine to close the last Passover, and died- and when He did, He reopened the doors of Heaven for us.  And now it's our choice once AGAIN to follow the right path to get there.  And God knows in this world now, it's NOT easy.

I'm certainly not a Holy Roller, but I'm trying to get there.  That's a name that I wouldn't mind having... I just need a little help.  And say what you will... but when you're put in a situation like mine- you have to choose one of two paths: Following and trusting God or turning against Him in anger.  And in my mind, the first choice is the only way to get through in our situation.  All I know is that having Tripp, and him having EB, has totally and completely changed my life (of course).  But in a way that I just can't explain.  I am STARVING to know God and to learn everything that I have been missing in my Catholic faith.  And I am trying to find ways to let go of my anger and resentment toward other issues, but it seems like those issues just keep getting bigger and bigger. It's not an easy road... and it's not easy to find the time to devot myself to something other than Tripp. 

Now don't get me wrong- I have other stressors in my life even besides Tripp that sometimes cause me to fall WAY off the deep end.  And I'm slowly trying to work those things out to where they do not consume me entirely to the point where I lose focus in caring for Tripp.  But my gosh, these issues seem to be getting bigger and bigger by the minute and testing me in every way possible.  ** And just a little side-note to anyone who thinks that they might know ANYTHING about my other situation... I can assure you that you know NOTHING- no matter what anyone is telling you**  I will be more than happy to share the truth with anyone who would like to hear it. I desperately need to hold on to my sanity by doing what's best for Tripp and I.  Something that I should have been doing for a long time. I've been SO selfless in caring for Tripp, that I've forgotten about taking care of myself, too.  And there's a difference in caring for yourself and being "selfish."  Because God knows that being selfish doesn't get us very far in life.

 I'm thankful to have a very successful business man in the community and probably one of the most devout Catholics I know, Mr. Mike Fulmer, helping me better understand my Catholic faith.  He's turned it into something that has meaning... instead of something that was just a "routine" in my life.  He told me something the other day that I really loved.  He said that "as the father of his family, (he) accepts the role of teaching the faith the the people that (he) loves.  The most important thing that (he) will do in his life is to provide them with the information they need to get to heaven." I think this is so important and I think that anyone who is a father, mother, or role model to someone should feel the same in passing on what your loved ones need to find their way to heaven.  Mr. Mike has a teaching online called "The Fouth Cup." I've heard it a couple of times in person (along with many other Bible teachings) and it is just amazing.  It is the explaination of the Eucharist and the Last Supper/Passover.  This teaching has brought many non-Catholics and non-practicing Catholics back into the Catholic church.  If you haven't heard of it or have never seen it, please take a look.  I promise it will change your life (or at least make you think:) You can watch the whole presentation at:

  http://www.the4thcup.com/

And now I shall end with some more very deceiving pictures of my child, who will smile and play for me to snap pictures just so I can have some good ones to post here on the blog,  and then go back to his rocking chair:)

This was a HUGE deal last night when he not only wanted to sit on Papa's lap,

 but he was in the OTHER room!  Go Tripp:)

OH, and Happy Belated Easter to ALL... The Easter Bunny was pretty good to Tripp, though he was no more interested in anything in these baskets as he is the man in the moon.

Love,

Hi :)

We are still here! Tripp is fighting some type of SOMETHING.  I have no clue what.  We tried Augmentin and that tore up his stomach and wasn't helping.  Now we have been on Avelox (same family as Cipro) for about 6-7 days and he's still running a low-grade temp.  So now I'm thinking it's probably his poor mouth.  But I think he also has a yeast infection going on, so Dr. Defusco is going to start him on some Diflucan tomorrow.  And if that doesn't work, back on Clindamycin for his mouth.  And if that doesn't work... I'm out of ideas!  I don't think the fever is respiratory related or GI related because those areas seem to be okay right now.  So I guess we will just try one thing at a time and try to narrow the issues down.  He hasn't been horrible... just not his normal self.  Well, honestly, I don't think I know what his "norm" is anyway.  But I know he's not feeling good.  He's not wanting to play, he's stiff like you can tell he's got "body aches," and his sores look bad.  

I can just tell when something's up. 

 I know my little man:)

I wanted to let everyone in on the decision for Tripp's 2nd birthday, also.  I initially wanted to do something big (and of course it would have been here at my parents... Tripp hasn't left this house in MONTHS) and let the adults peek in at Tripp, and the kids stay outside and play.  But I talked myself out of it.  Reasons being: 

1.  We've tried WAY too hard to keep germs away from Tripp, especially in this past year, so I just can't see how having a big huge birthday party with lots of people would be a good idea.

2.  I have WAY too much going on right now than to stress about planning a big birthday party (especially since I'm a little anal when it comes to that and everything would have to be perfect). 

3.  If I'm going to be honest, I don't think I'm in the "state of mind" to watch a ton of healthy kids running around in the yard when Tripp probably won't even get off of the rocking chair.  No offense, but the older Tripp gets, the harder it gets to see other kids:(

SO, I think we are just going to have something low-key with immediate family only and give Tripp A LOT of lovin' and kisses and presents:) That's what he would want anyway (minus the lovin' and kisses:)  I think he will be happy with that.  And I think it will be the best thing for him and for everyone.  

I can't believe my little man is going to be TWO.  

What a blessing.  

The toughest, but most rewarding and most special two years of my life.  

Look at those cheeks!  I see a little steroid moon-pie face coming on:)

To me, nothing could be cuter!

My little musician fell asleep with his shaker:)

My wonderful aunt Sharon who lives in Pensacola came to visit this past weekend.  And she brought me the most amazing surprise.  Without me knowing, she had contacted one of my awesome blog readers, Holly Stokes.  Holly is from Queensland, Australia and she is obviously SUPER talented.  My aunt went to her blog (please visit it HERE) and asked her if she would mind drawing a sketch of Tripp for me.  So she drew THREE- free of charge- shipped them all to my aunt herself- and even framed one for me.  Then my aunt framed the other 2 for me, and brought them all here:)

I am IN LOVE with them.  

Holly- these are pictures that I will treasure for the rest of my life.  They are absolutely beautiful.  You are so talented and truly appreciate you taking YOUR time to do this for me. They are all three hanging over my bed where Tripp and I sleep:)  Thank you, Thank you!!

Thank you aunt Sharon for this gift I will have forever:) 

You know how much I love you!

And here they are....

(they are pictures of a copy of the originals... so sorry about the poor quality.  But they are GORGEOUS)

Love,

Update.

Tripp's good days have lessened just a little in the past week.  We started him on an antibiotics again- I could tell his mouth was swollen and bothering him really bad.  And also his little sores around his neck start to drain a lot where you can tell they're infected.  I started Augmentin on Friday, and usually within the first few days, he starts to feel great... but they aren't working like they usually do.  He is still managing to play and show off a bit, but I can tell that he's still hurting a lot more than normal.  He's also got belly problems from them this go round, even on his super duper probiotics.  So when you have to change him so much more often... he's NOT a happy camper. 

But now are you ready for the best news EVER??  I finally got him a prescription for Versed for bath time!!  Versed is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event.  Don't ask me why we haven't been giving it up until now, because once I asked his terrific doctors for it, I had the prescription the next day. I guess the only time I ever asked for it was in the hospital and the doctors there couldn't send it home with me.  Versed is what they give Tripp before all of his surgeries that makes him loopy and HILARIOUS.  And O MY GOODNESS... when I gave it to him Saturday for bath, he actually let me put him on the table without crying, sat up and let us unwrap his bandages, and then (prepare yourself) he was SHAKING HIS SHAKER in the bathtub.  I'm not kidding.  That has NEVER happened in the past two years.  Now, I may be a little ahead of myself with bragging about this, because today is bath day again, but hopefully this medicine will do the trick for each bath from now on.  I mean, don't get me wrong, he still cried... and you could tell the water still hurt him.  But he was so loopy that he would cry for a few seconds, then it was like he would forget and start playing again.  It did make him a little irritable when it was wearing off after bath, though.  But we have to pick our battles, I guess.  I will give him whatever it takes to make the bath time pain and anxiety go away.  

Thank you to Tripp's one of a kind doctors- Dr. Rodriguez and Dr. Defusco.

And through everything, he STILL manages to do this-

Here he figured out that he could pop open this toy on his head.  

Could it have made a blister... yes.  Can you tell him no... no.

He was CRACKING up... so were we :)

This laugh is what I LIVE for.

He recently discovered that he can make a new sound with his trach:)

That's why he's my HERO.

Also, I got the best surprise last week.  The girls from Dr. Agena's office (My OB who delivered Tripp) stopped by the house and brought me a huge basket filled with some pretty awesome and very generous surprises and goodies.  They also brought Tripp a basket and got to meet him as well.  He had just woke up so he wasn't interested at first, but right before they were leaving, he popped up and showed off for them.  So I want to give a big THANK YOU to Lyndsi, Tamie, Courtney, PJ and all the staff members at the North Oaks Ob/Gyn Clinic.  I was in awe at how thoughtful your gifts were.  I am so very grateful to you all.  

I think Tripp liked his basket, too:)

That's a smile, in case you were wondering. 

Love,

Tangi Lifestyles Article.

Our story was featured in a local magazine called Tangi Lifestyles.  It is a color publication featuring local businesses, people and lifestyles in our area.  It is directly mailed to 25,000 households in Tangipahoa and eastern Livingston Parishes every other month.  I feel so honored to have been chosen for a 3 page spread in their Mother's Day issue this year.  So many people are helping to spread the word about EB... little by little.  It feels so good. 
You can view the article HERE.

I am SO pleased with how it came out.  Thank you Tangi Lifestyles... the article is beautiful and the pictures that were taken by Summer Boyd Photography are some that I will treasure for the rest of my life.  Thank you so much, Summer.  It was so much fun having you here and getting to capture such special moments with my little man.  You are so awesome... and so are your pictures:)

And once again, I want to thank my dear friend (drumroll please...) you guessed it- Dianne Cothern, for helping us spread the word about Tripp and EB.  She's been our #1 EB Advocate.  Love you, Dianne. 

Love,

A miracle himself.

This weekend was kind of sad for me.  I have "those days" every now and then when reality sets in and I actually have time to stop and think.  Either about what the future holds or the fact that Tripp's current life is so incredibly different than a normal (or should I say "healthy") 2 year old's is.  It makes me so sad that I can't take him places or do things with him that healthy kids can do.  I mean, I can't even pick him up and hold him without him getting anxiety because he thinks he's getting a bath.  Then when I go somewhere... like church yesterday and see all of the kids- it makes me sad.  I'm normally okay about it and can deal with it, but sometimes it just hits me like a ton of bricks.  Especially when I see kids who were born the same time as Tripp, whose Mommies were pregnant at the same time I was.  That's a hard thing to see. 

I realize that people who have healthy kids don't really have a chance or a reason to stop and think about how much of a blessing it is for them to be healthy.  But being on the other end, I swear I think about it every single day.  Somedays I can face reality and other times it slaps me in the face.  I would give anything in this world for Tripp to be a normal, healthy boy and be able to run around outside, go get a snowball, ride his bike, eat cheerios, brush his teeth, or sleep cuddled up next to me without machines on or worrying about getting a blister.  Sometimes I just look at him, and I try to picture what he would look like if he didn't have this horrible disease... no sores, his eyes perfect, fingernails, toenails, little chunky thighs... and then I have to take myself back to the reasoning that God has a plan for him.  And it's not right for me to picture what he would be like "EB free," because he was never meant to be "EB free." He wasn't meant to have fingernails and toenails.  He wasn't meant to be able to speak like other kids.  He was put here to touch and change lives... even if it's one person at a time.  And I see what he's done just in our community.  I see the people that have come together to help us, the people who have come into our lives that we otherwise would have never met, and the sacrifices people are making to help make our lives just a little bit easier.  

It's so horrible when you actually take the time to stop and think about what's going on and how much Tripp is suffering each day (and thinking about how much he's suffering and actually SEEING him suffer is totally different)- but I just don't have any other option than to focus on the good that is coming out of this.  I mean, what does focusing on the bad do?  It leaves me sad and depressed and unable to be happy for Tripp.  And that's not an option (But like I said, I'm certainly allowed my one meltdown a month or so, I think).  So once again, I want to SINCERELY THANK everyone who has been so supportive- your kind words, emails, letters, etc.  You may not think that it's doing anything.  But each word gives me just another push forward... literally.  I'm so blessed to have the support that I do.  And I know I always say that... but it's SO SO true.  I can't imagine going through this without so many people, who have played so many different roles in my life. 

I AM SO GRATEFUL.  Seriously, I am. 

On another note, Tripp's beautiful, wonderful ENT Dr. Rodriguez made a house call on Thursday.  She said she had been thinking about us and had an idea that might help Tripp's breathing.  So she brought over a bigger sized trach (which is still not the size that a normal 2 year old would wear), but it at least gives him a larger hole to breathe out of.  It's a 3.5 in diameter instead of a 3.0.  And it does seem like he is breathing much better.  So far none of the noisy, wheezing breathing.  The only thing is that my suction catheters are just a tad too small and don't really "do the job" like they did with the smaller trach.  But he is getting to the point where he can cough pretty good on his own, so he helps out a little.  Except when he's sleeping and laying down.  

Anyway, I have a few more videos that I took after I posted all the others.  He's always been a dancer and a booty-shaker, but in the past couple of days, he's been REALLY getting down.  Like throwing his arms around to the tune of the music.  I swear there is nothing in the world that can melt your heart more than seeing this kid SO happy and playful with all he goes through.  

I keep saying that I'm waiting for a miracle... 

but he's already a little miracle himself.

 Check this one out.. it's my favorite to date. Listen close to his movements and the words in the song. Also, he's "clicking" with his tongue as he's dancing ever so cute:)

This is his little "play area."  (I want to get rid of the big green and red tub, but he loves it cause it makes sounds when he bangs) But anyway, he walks all the way down to "spin" the ABC wheel, then walks all the way back to his drum and beats to the tune of it.

Dancing to 1, 2, 3, 4 on Elmo.  I can't catch him all of the good times that he dances and shakes to the exact tune, but I think I caught a little of it.  I think in this one if you listen close, he's "clicking" the tune with his tongue, too.  

Grammy "fake chewing" bubble gum, blowing the bubble, and popping it.  

Look at him "chewing" with her:)

This is a short clip, but he will laugh at this for hours!
And it sometimes helps him not to cry for diaper changes:)

He especially loves when MeMe really chews gum and pops it. 

Love,