Sunday, November 28, 2010

Angel giving tree.

So I found out that The Salvation Army pairs up with JCPenney's to offer online Angel adoptions for Christmas called the Angel Giving Tree.  You can adopt children or senior citizens who are in need.  It doesn't cost to adopt but you get a list of the child's needs and wants.  You can adopt someone in your area, or someone across the country.  It doesn't say names... just age and location.  

I adopted my angel yesterday.  I'm not saying that I have everything I need.  But I feel SO very blessed and fortunate to have so many people who want to help our family.  And all our family needs this Christmas is a miracle of healing for Tripp, so all I can ask for is prayers.  But if I could have ONE Christmas wish it would be for everyone I know to adopt someone in need this year.  Either here at the Angel Giving Tree, or by going to your local church and asking for a family to adopt, or however you can help make Christmas a little more special for someone in need.  It breaks my heart to think that there are children who don't get anything at all for Christmas, when Tripp has 457 toys just lying around.  You don't have to get anything big... just maybe a doll, or some toy trucks.  Or even a t-shirt or a pair of shoes.  I know it will make you feel good this Christmas.  It made me feel good:)

But on a "Tripp" note, I'm starting to think he is nocturnal.  He likes to sleep all day so he can stay up all night.  And in the mornings when I "think" he's about to get up... I'll ask him, "Do you want to get up?" or "Do you want to rock-rock with Mommy?"  And he will most of the time get mad and turn to the other side, usually trying to slap me out of his face.  Poor man knows how bad it hurts to get up and start moving around so most of the time I have to drag him out of bed before it's nighttime again!  Then most days it will take him awhile after getting out of bed to actually want to try to sit up and play.  His eyes are hurting him so bad... he's still been pretty much hit or miss these days.  Sometimes you can tell he can't do a thing because his eyes bother him, and other times (especially after bath) he can play, dance, or throw a fit with the best of them.  

Gosh, I love him.  Some days (mostly morning or night when I'm laying next to him) I'll watch him with his poor squinchy eyebrows and his knees pulled up to his chest in pain.  Or worse, when he flops around like a fish because you can tell he's itching somewhere and can't scratch.  And don't even get me started on bath time.  That is just awful and we all (Tripp, mom and I) have to mentally prepare ourselves for it.  

Most of the time it really gets to me that I can actually be strong enough to watch my baby in so much pain.  I know that I have to be and that I don't have any other choice, but sometimes I just feel "cold."  This whole disease plays games with your emotions, you guys have probably figured that out by now.  But it's just weird to me that I can actually do all the things that I have to do to Tripp, and cause him SO much pain.  I WANT to break down and cry, don't get me wrong.  But it's like I'm just numb- going through the motions.  I don't know, it's hard to explain.  But I do know that I would literally give my life for him to never hurt again.  

But on a brighter note, I get to spend all day with...

 "Dr. Tripp."  

These pictures are WITH numbing drops in his eyes 
(shhh... don't tell his eye doctor)- "quality of life" is my motto:)

OH, and I almost forgot!!  Tripp learned how to say "book" today.  And it's just about the cutest thing I've ever seen.  I will try to get it on video soon.  It makes us so proud when he learns a new sign.  It's so cute to see him watching us so closely and then trying to mimic us.  
I don't know how you can love one kid SO much. 


Thursday, November 25, 2010

Happy Thanksgiving!

Turkey Day one year ago!

Turkey Day today!  

I have so much to be thankful for.  
I am so thankful for my little angel and the months that I've gotten to spend with him.  
I hope I have many, many more to come.  

I am thankful for my amazing mother... nothing I could ever do would repay her for what she's done for Tripp and I.  Her life has been put on hold for us.
I have such a great family and such great friends.  
I love you all so much.  
Thank you for loving my son like you do.  

God Bless,

Tuesday, November 23, 2010

EB Blog Award

I'm so happy to say that my blog has been chosen for an award for being a resource to nurses at  This is awesome news to me, as spreading awareness is so important to me.  Now people across the country who are nurses, or seeking a nursing career- can read about EB, be aware, be prepared, and pass this information on to other nurses as well.  I think it is so important (no matter how rare EB is) for healthcare professionals to know what goes on in the lives of these children and their families.  I'm honored to have been chosen.  I received the following e-mail:

Dear Courtney,

Congratulations! Sarah here, and your blog, "EB"ing a Mommy, is an essential part of our resources!

As a website dedicated to help those consider a career as a registered nurse, we only provide the best information available.  Whether it's a resource that helps you understand a particular disease, or how to best interact with an Angelman's Syndrome patient, we provide them for those seeking to obtain this information.  This is why we've featured your blog, as it is one of the best to teach our readers.

You can see your blog and others at: 

Please check it out if you have a chance.  There are also a number of other blogs featured to educate future/current nurses about EB.  Thanks and have a great week!


Monday, November 22, 2010

TinyPrints cards for EB Research

Hey guys... If you're looking for a Christmas card this year, check out these cards.  Courteney Cox, along with several other celebrities, have created these cards and they benefit the Epidermolysis Bullosa Medical Research Foundation.  What a great way to do donate to EB Research and also get some cute, fun Christmas cards made!!  


"Pray without ceasing" -1 Thess 5:17

Hey guys.  Tripp actually had an okay day yesterday and and a pretty decent day today.  Today he actually sat on the floor for awhile and let us play with him, without fussing for us to pick him up.  That's a pretty big deal for him becuase he hasn't been doing that at all.  He still had his moments where he would feel bad and just want to rock... but you can at least tell that he WANTS to play, but just sometimes can't because his eyes hurt him too bad.  

Tripp is SO much fun when he actually "feels" like playing.  He has the best personality ever.  He's so funny and definitely keeps us on our toes.  He's to the point where he can tell us "no" and really know what it means.  And I have to say it's pretty darn cute when he's so rotten.  Like if he has your phone and you want it back- he says "no," or if he takes my mom's glasses and she needs them back- he says "no," And my favorite, when you ask him for a kiss- he says "no." 
Look how rotten...

I love this walker because it's older (we got it from a family member) and it's got 6 wheels instead of 4, so it helps him to turn easier without dragging his feet.  Some of you had asked questions about the walkers/bouncers awhile back... wondering how we used them without getting blisters.  I usually just leave a blanket in it so the blanket keeps the edges of the seat from touching him... and usually as long as he's bandaged up and no skin sneaks out, he's okay.  But that could change soon with all of this bouncing around he's doing now- like in this next video.  

He learned a new sign yesterday- Quiet or Shhhh.  It's so cute. We taught it to him after we realized that he gets a little attitude when we ask him to sign something and he doesn't want to.  So we taught him how to tell us "shhh.. or quiet"  Yes, I know... we're creating a monster.  He doesn't really know how to use it, though.  But he DOES know how to "slow" dance and "fast" dance (and the little fuss he gives the first time I ask him to do it, is what we get A LOT :) See?

This child LOVES music.  My favorite is when he's rocking in the rocking chair with his eyes closed, you start singing to him... and you can feel his back start to "bounce" to the rhythm that you're singing.  He's got the cutest little dance that he does to ANY music with that quick, jerking, head-nod.  It's just plain adorable.  Right now he loves The Itsy Bitsy Spider and I love when he does the "sun" part:)

And he also "wanted" to get in his swing yesterday... it probably messed up his eyes more, but hey- he gets what he wants.  Even if it's Grammy's glasses.  Watch how happy he gets when he knows he got what he wanted:)

Yes, today was the last day of his 10-day antibiotic cycle.  Could it be possible that they did their job and that his eyes are just bothering him now- yes.  Is it possible that in 1-2 or 3 days he will start feeling terrible again- yes.  But all I can do is be thankful for the good days that he does have and make sure I witness every second of his happiness and every second of his misery.  Because in all reality- I don't want to miss out on ANY SECOND of his life, no matter what. 

I'm on cloud nine when he's feeling just a little bit better- enough to actually make me believe that he has SOME quality of life.  Though when we bathed him yesterday... it was SO bad that I told my mom that my heart just sinks to my feet and I honestly would rather ANY alternative than for him to be in the pain that he's in (and the itching that he has).  But then about 30 minutes to an hour later- half way through bath- he's like a new boy.  It's like he feels 110% better.  And it's two totally different types of emotion for me.  Talk about an emotional roller coaster...  The good times are good and the bad times are BAD.  

But I'm learning.  I am learning SO much.  From Tripp...from others....and from God.  I'm realizing more and more each day why God chose me for this journey.  I was starving for Faith and missing SO much in my life.  For those of you who don't know by now... I am Catholic.  And up until last week, I was the Catholic who went to church every Sunday, and instead of flipping through the scriptures to see what mass was going to be about... I would flip through them to see how long they were going to be.  Or instead of giving my undivided attention during the Liturgy of the Eucharist... I would be looking around to see who all made it to church that day.  But for the past 2 weeks, a very close family friend, who is an amazing man of faith and who knows the Catholic religion inside and out, has been coming to study the Bible with me... and teaching me.  And I am BLOWN away.  I don't know if it's because us as Catholics receive the Holy Spirit in Confirmation too early, or if it's just that we aren't taught IN DEPTH about our religion and faith at an early age.  But let me tell you... I am learning things that I never knew, getting questions answered that I've had for years, and growing in my faith each new day.  And I'm loving every minute.  

I know maybe that it's sad that it took something horrible like my son having EB for me to actually be READY to learn (because you have to be ready)... but maybe this is all part of the big plan.  Maybe He has big plans for me.  I already know that He has big plans for Tripp.  

We rejoice in the hope of God's glory.  Not only this, but we also rejoice in sufferings, knowing that suffering produces endurance, and endurance, character, and character, hope.  -Romans 5:2-4


Thursday, November 18, 2010

Groundhog Day

So I haven't actually updated on Tripp in a while, I know.  It's just felt a little like Groundhog Day around here.  Same routine day in and day out.  God Bless my Mother the saint for all the help she is giving me.  I know she's exhausted, too.  And Mrs. Pam who comes almost every morning to help.  I'm blessed to have the help that I have.  It's not so much physical exhaustion- it's complete mental and emotional exhaustion from watching your child in constant pain.  I wake up, fix his breakfast, give his meds, wash blankets and diapers, get him up, change him, rock him while he closes his eyes in pain and scrunches his eyebrows, feed him again, give meds again, wash more blankets and diapers, maybe play a little while if he's up to it, walk outside for about 3 minutes until he wants to come back in because it bothers his eyes, rock some more, feed him again, (throw a 2-3 hour bath session in every other day), give night meds, get ready for bed, get up all through the night to suction and change diapers, then wake up again.  You get the point, right?  Groundhog Day?

Sometimes I feel like he has NO quality of life... and then other times he'll prove me wrong by showing off after bath or something.  It just stinks so bad... I SO wish that he felt a little bit better so that we could take him somewhere (anywhere)- even outside for a while.  It's just completely terrible and heartwrenching to watch- I'll be honest.  His eyes are bad, his mouth his bad... he wants to be held or rocked- that's about it.  So there's just not much to update.

It just seems so unreal to me that EVERY part of the body that could be affected by this disease is affected in my son.  Skin, airway, feeding, mouth, eyes... you name it... he's got it.  Like I keep saying, when does he get to catch a break... just a little one?  Please, God?  please... please :)  OK, so that's not how my daily prayers go... but it can't hurt to beg every now and then.  This morning when I woke up and stared at him asleep for a while like I usually do... he looked SO perfect and SO peaceful.  My morning prayer was this, "Thank you God.  Thank you for this gift.  This little boy has COMPLETELY changed my life.  I trust you.  I trust that you know exactly what you are doing and that you will give me the strength that I need and the patience that I need to be the best Mommy I can be.  Amen."  

I don't want to pretend that I never get ticked off or I never lose my patience... but for some reason, I have this really calming, comforting feeling that God is charge and that all of this is totally out of my hands.  I guess when you find out that "there's nothing else you can do" so many times... you learn to let God take over.  I guess I have the ability to focus more on how great Tripp's reward in heaven will be. But I've got to tell you... I have never loved anyTHING or anyONE in my lifetime as much as I love this little boy.  It just hurts to THINK about how much I love him.  It seems like even if Tripp is feeling bad himself... if he can sense that I'm sad or having a bad day- he will always do something to make me smile.  That's what I love most about him.  He's the coolest, strongest, most handsome little dude I know.   And he's MINE... how cool is that?  Goodnight!


Wednesday, November 17, 2010

Help Anton find a home.

I am in tears.  There was a nice blog reader who sent me the link to this website.  It is about a beautiful little boy in an orphange in Russia.  He is a twin.  He was born with EB, but his twin was not.  The parents took only the child without EB home- and left sweet baby Anton in the hospital alone.  I literally had tears running down my face watching his video.  He reminds me so much of Tripp- his BIG brown eyes and his AWESOME little smiling personality.  This is what is said about Anton:

Anton is a very smart, calm and an incredibly patient boy. He watches adults come into the room and greets them with a smile despite the fact that they often cause him devastating pain changing his bandages. No matter how well nurses care for Anton, it will always be just their job, and at the end of the day, Anton will always be alone in his crib. Just look at him, look into his eyes! He doesn't belong to this place, he needs and deserves a loving family.

I swear that all the EB babies in this world just have the greatest little personalities.  I want Anton- I'm not gonna lie.  If my parents wouldn't put me a a "crazy-house,"  I would adopt him tomorrow.  It literally breaks my heart to think that there are children that have to go to sleep at night and wake up in the morning with no parents to love them or kiss them goodnight... or wake them up with a "good morning to you" song.  Especially a child with a disease like EB.  These children need such special care and so much extra special love- OH I can't even THINK about it.  So please- I'm not telling you to adopt Anton, but either donate to his adoption fund to make it easier for someone to adopt him- or help spread the word for him.  He, like every homeless child out there, deserves a family and someone to love him and take care of him.  

Visit his website or watch his video below.  He stays in his crib all day long- arms swaddled so that he doesn't cause more damage to his skin- with no Mommy, no Daddy, no Grandma or Grandpa.  And no one to squeeze him and kiss him.  OH how I wish I was a billionaire and could open up my own orphange and be a Mommy to these poor babies.  GOD BLESS all of you Mommies out there who foster and adopt.  Maybe one day for me:) Just not today...


Sunday, November 14, 2010

18 months and counting...

My little prince makes 18 months today!!  Half way to 2 years- whoo hoo!!  I can't believe it- it doesn't seem like it's been a day over 5 years!!  Ha... No really, I could say that it's flown by- but I would be LYING.  But it doesn't mean that I haven't made the best of and cherished every single moment for the last 18 months.  It's been completely devastating watching my only son suffer the way he does every day... but there has also been so much good that's come out of this.  And I know that if Tripp could understand how many lives he's touched in the short 18 months that he's been here- he would be so proud.  Because I know how proud I am.  

Dear Tripp, 
You are the joy of my life.  You are the reason I wake up each morning.  And each night, when you go to sleep- you lay your head right next to mine.  Right now times are tough for you.  You haven't been feeling well at all.  Your eyes and your mouth are hurting you really bad.  Each morning when you wake up, Mommy changes your cute little booty and cleans you all up and then we rock-rock until your medicine kicks in.  Then most of the time, with your medicine, you will stand up and play with your toys.  Right now, when you're standing up... we put all of your toys in front of you, and you like to throw each one off onto the floor, one at a time.  It's so cute because you do it with such an attitude and you love making us pick them up so you can throw them again. 
 You are also learning sign language (slowly- but that's Mommy's fault not yours).  You can say more, ball, mommy, baby, please, thank-you, excuse me, hat, shirt, and shoes.  You say yes and no by shaking your head.  And when you say "no," you mean "NO."  And you're especially rotten because you only like to do these things when Mommy says, "Don't you do that:)"  But that's Mommy's problem- she's created a monster (but a really cute monster).  You haven't spoken a word yet, but we know exactly what you are saying.  And when someone speaks to you, you understand exactly what they are saying.  You are so smart and Mommy is SO proud.  
Now that it's cooler, you enjoy going outside.  Though you can't stay out long because it hurts your eyes... you like to ride your car or your wagon.  And you also like to watch the cars go by on the road.  You LOVE music.  And you especially like when we sing to you.  Right now, when we sing the "ABCs," you pat your chest to the rhythm and pause when we pause.  It's so cute.  You also love books.  Though, you are kind of like your Mommy, because you only like to look at pictures and turn the pages really fast.  You are the cutest dancer in the whole entire world.  You either become really stiff and nod your head, or you shake that little booty so fast.  And your little feet are ALWAYS wiggling.   

Remember how Mommy told you that God has really big plans for you.  Well we still don't know what they are, but we know that you are one REALLY special little boy.  I'm not sure what Mommy did to deserve you, but every night I thank God that He sent you to me.  I can't imagine my life without you.  And I surely don't remember what my life was like before you were in it.   But I want you to know that one day you will get to live with Jesus in heaven.  It could be tomorrow, it could be in 5 years, or it could be in 20 years... we don't know.  But I don't want you to be scared- because Mommy will be with you every single day for the rest of your life. 
 You have already had to go through some things that most people will never have to go through in their whole lifetime.  This is why you are so special.  And like I said, I don't know WHY you have to go through these things- and trust me- I KNOW that it's not fair.  But please believe Mommy when she tells you that ONE DAY- we will all know why you had to have EB.  And we will all know why you had to suffer every day of your life.  And every single person who meets you, or follows your story, will be a better person because of YOU.  That's some big shoes you're having to wear, my son... but I don't know anyone else in this world who is stronger than you.  When I look at you or hold you- you literally make my heart melt.  I wouldn't trade you for any other healthy kid in the whole wide world.  I wish I could tell or show you how much I REALLY love you... but it's SO much that you will never ever know that.  And if I could take every single sore from you, or take all of your pain so that you never had to hurt again- I would in a heartbeat.  I wish it was Mommy instead of you. 

Happy 18 months, you little monkey.
You're still proving those doctors wrong.  
Let's keep proving:) 


Thank you all for sharing these precious 18 months with us.  Tripp has made it this far because you all give me the love and support that I need to do the things that I have to do for him each day.  I hope you will continue to follow Tripp for many years to come and I hope we can all witness a true miracle for him together.  

I hope that if Tripp has taught us just one thing-  it's to never take a single day or a single thing for granted:  health, happiness, or life.  And please know that I truely believe that God has given Tripp to me to show me the REAL meaning of life- loving one another.  Really, take a step back and look at your life- what's REALLY important??  Is it yourself?  Money?  Material things?  Do you get angry over all the small things?  Do you push all the important things in life aside for the things that won't really matter in the end?   Think about it.  We were all put on this Earth for one thing- to get to heaven.  This is just a short journey to your eternal life ahead.  This is not our home.  So make sure you start thinking about those important things.  We have everything we could ask for and everything we need.  Do something nice for someone today- even if it's something little.  Someone who doesn't have everything they need.  A family that is struggling through the holidays, or someone who doesn't even have a family. Go out of your way:)  Have a great day!  Love you all! 

Oh, and I added a new "Videos" page at the top of the site per some requests:)
So if you missed any videos in the past few months... check them out:) 
The eye rolling video is my all time FAV.


Friday, November 12, 2010

Update and Thanks.

As of yesterday morning, we were planning on taking Tripp in for his eye surgery and then admitting him into the hospital.  This was a decision that Dr. Defusco and I made based on the way Tripp has been feeling and acting.  We felt like since he was resistant to the antibiotic that treats pseudomonas and we were only using a topical to treat it in certain areas- that he may have it in other places that aren't getting treated.  SO we thought that the only other option was to give him IV antibiotics.  

But here's the catch-  We wanted to wait and get his blood work results back to see if his WBC was still elevated (indicates infection) before we started him on the IV antibiotics, BUT for him to give him the IV antibiotics, he would need a central line (a catheter that is passed through a vein in the chest to end up in the right atrium of the heart).  Which means- more risk for infection and more trauma to his skin.  So we were minutes away from going into surgery to do this and the doctor from the Pediatric floor, Dr. Starr, came in to talk to us.  We weighed out the pros and cons of doing the central line and IV antibiotics- and there were WAY more cons.  Dr. Starr also brought in the infectious disease doctor to take a look at Tripp and his wounds.  And we came to the conclusion that if his sores are just draining and not getting red and spreading around the site- then it wasn't time for IV antibiotics.  We need to save the IV meds for when we have absolutely NO more options.  Plus, if his central line was to get infected- that would go straight into the bloodstream (not good).  And also, even if his WBC was high- it could be from an infection in his mouth- which is a WHOLE different story for another day.  I think I cried one whole day over his mouth.  It's impossible.  

But anyway- SO... we literally waited in the pre-op room from 12:30-4:00 trying to decide what to do.  And we finally decided- no central line, no IV antibiotics- and if his WBC was high, the infectious disease doctor had another option for oral antibiotics that we could try.  So, we were just planning on putting new contacts in and letting Dr. Shah trim some of the tissue that is fusing onto his eyeball.  Now, on with the Versed to prepare to take him in.  He is hilarious on Versed... bless his heart. 

Then we gave him to a "new" anesthesiologist (talk about nerve-racking)... and waited.  Well- about 30 minutes later, Dr. Shah calls us to come into the Conference Room (HOLY $#*%... are you kidding me??)  He might as well have stabbed my chest, pulled my heart out, and brought IT into the Conference room.  Then he told us something that I've been expecting for months... "There's nothing left for me to do."  And I totally respect him for this decision.  He said that when he started to look into his eyes- he saw that all the areas that they've messed with before (trimmed, cut, sewn membranes) all made granulation tissue and those spots fused to his eyeball.  He said that even the contacts aren't an option anymore because they just won't fit because of all the tissue that is fusing onto his eyeballs.  He also said that his vision in his left eye is half of the vision in his right.  :(  He also said that the top layer of his eyeball (membrane) was just loose and completely not connected to his eyeball.  But hopefully, by making the decision to just "leave things alone"- the fusing won't get worse, it will stay the same (with intermittent steriod injections).  But he will still be dealing with the corneal abrasions.  For a corneal specialist to step back- bow out gracefully- and not do anything... is a big deal.  And I respect him for that.  

I don't regret trying everything that we have already tried- because we didn't know that it would cause more damage at the time.  But it's definitley time for us to step back and give his eyes a break.  It just stinks that even the contacts (which were our saving grace) aren't an option anymore.  So he will just have to live with the abrasions now and hope that they have a chance to heal.  Which probably means that he will be on morphine for a while longer, if not forever :(  I've said it before, and I will say it again- WE ARE SO BLESSED to have such a wonderful team of doctors for Tripp.  I could go on and on about Dr. Defusco and how much she does for us.  I feel like she really cares for us and has nothing but Tripps's best interest at heart. 

So he left his eyes alone- and we went into the recovery room to see him.  And man O man, his eyes looked bad.  I think just from the doctor looking around in there, things got swollen and fired up.   

Dr. Starr came in and discussed the blood work results with us.  His WBC had gone down from 30 to 20 and now to 16.  Which is good...  but there were two other indicators of inflammation that had gone up.  So they don't know what could be causing that.  Is it a bacterial infection?  his mouth? what?  Could me a number of things.  So he gave us two more oral antibiotics that will cover most of the things that could be wrong.  We will try these and hope for good results.  

On a brighter note, I received a beautiful gift today :)  A nice blog reader, Vicki, decided she wanted to do something nice for me.  So she and a local friend, Diane Rabalais (who helped delivered Tripp) along with the help of lots of other friends sent me a beautiful bouquet of flowers.  See?  

A big, huge THANK YOU to Vicki Beever, Diane Rabalais, Aly Ragan, Bonnie Anderson, Sarah Hyde, Ashley Richardson, Lisa Watts, Rachel Arteaga, Linda Weisberg, Amber Ragan, Linda Ainsworth, Grady and Arlene Chatellier, Sheri Chatellier, Christine and Mark Tomres, Jason and Sharee Wells, Jessica Jaubert, Jeffery Ehressing, and John Harris.  

This beautiful bouquet of flowers definitely made my day:)  I feel so blessed to have such wonderful, kind people in my life.  Thank you all so much for taking the time out of your hectic lives to do something special for me.  I truly appreciate it.  

I also want to thank my aunt Mary Threeton who always makes me "random comfort cakes."  I may not thank you in a year when I've gained 30 pounds- but right now... I'm LOVING my comfort cake:)  
And this one is a beautiful butterfly... See? 

Thank you all again for all the love and support you have given us.  We are blessed beyond words.  I am so amazed at the response that we are getting from for Tripp's fundraiser, and from all the wonderful people who are contacting me and asking what they can do.  Honestly, all I can ask for is prayers.  Right now, a miracle is the only thing that is going to take Tripp's pain away.  Thank you again.  


Monday, November 8, 2010

Christmas Trot for Tripp

I am SO excited about this fundraiser for Tripp.  A good friend, Dianne Cothern, has been planning this for a while now and I just found out about it last week.  
It's called the Christmas Trot for Tripp.  It will be held on Saturday, December 11th from 8:30am-12:00pm.  It is a 5K/1mile Fun Run that will start and end at Cate Square Park in Hammond, LA.  There will also be activites set up in the park for the kids such as inflatables and face painting.  There will be food, drinks, and entertainment as well.  

As most of you know, Tripp was born while we were living in St. Charles Parish.  There were many fundraisers and events set up for him in the past year over there and I am SOO grateful, but not very many people around this area (Ponchatoula, where I am from) knew about Tripp or EB.  So I have to say that I am forever grateful to Dianne and every one who is helping to make this fundraiser happen so that we can spread awareness.  

Dianne has set up an event page on Facebook that will give you all the information you need.  If you click here it will bring you to that page.  To become a sponsor for the run, it is $100, which includes your name of logo on the back of the shirts and acknowledgement the day of the fundraiser.  There is a $20 entry fee which includes a t-shirt (child sizes available as well:).  Or I believe you can pay $10 for just a t-shirt.  Registration forms can be picked up at Rossie Furniture in Hammond, or you can contact Dianne and she can mail you a form or tell you where else you can pick them up:)  All proceeds will go directly to an account that is set up for Tripp's expenses (hospital, doctors appointments, medications, OTC supplies, etc.) 

Please contact Dianne for any other information.  
Her e-mail address is: 
Or you can contact her by phone at: (985) 966-5433.
Also you can mail checks or registration forms to her at: 
1505 West Thomas Street  Hammond, LA 70401. 

AND Dianne was on 2 local radio stations Monday morning (Tangi 96.5 and Kajun 107.1) promoting the fundraiser!  She did such a great job!  I truly feel blessed to have her as a friend:)  Thank you again, Dianne- I can't imagine how much stress this has been for you- but I want you to know how much we appreciate you doing this for Tripp and our family.  We are forever grateful:)

I've been trying for two days to upload the audio of Dianne on the radio and I guess it's too long.  I will keep trying:)  But here is the flyer that was made.  AND I'm trying to make the registration form into a link so that you can click on a button on my sidebar and print it out yourself..... BUT having no success with that either.  I'll keep working on it! 

P.S.  Tripp's eye surgery is scheduled for tomorrow.  He will get some new contacts and some of the tissue hopefully trimmed off of his eye.  I don't know what time yet, but probably around lunch time.  And I talked to Dr. Defusco today and we are thinking that we will probably admit him- for at least 24 hours and wait for his blood work, in case he needs IV antibiotics.  I've been working on getting someone to look in his mouth since Monday, with no luck yet.  So frustrating.  I will try and keep you guys posted via Facebook tomorrow.  Please continue to pray for my little man.  He's really not been feeling well at all.  Thank you all so much. 


Baby Elle receives her wings.

This post is a little late, but I had trouble getting to my computer this weekend with a little monkey attatched to my neck.  Last Thursday, after a long battle with EB, Baby Elle finally received her angel wings and is flying high with all of the other EB sweeties in heaven.  Elle was in Minnesota taking part in the Bone Marrow Transplants for EB (same place as Bella).  She was 43 days post transplant and was unable to fight the battle of EB any longer (she was 11 months).  Please visit her site and give her family (the Pops) your love and support as I cannot imagine what they are going through.  We love you Pops.   

Elle is now free of pain, bandages, and blisters.... flying with her friends and family in heaven. 
You will always be remembered, Baby Elle. 


Wednesday, November 3, 2010

My little Monkey.

Hi guys... I wanted to give an update since I've been busy doing EB Awareness posts:)  Tripp has been hit or miss- good days/hours and bad days/hours.  Honestly, each minute can mean something different for him lately.  He is still on the morphine (around the clock again within the past few days because of his corneal abrasions).  His eyes are just POURING tears and constantly draining.  But thank God he is still opening them (there goes my jinx, I'm sure).  Anyway... I am patiently waiting to hear from the eye doctor about when we can get another OR room to put his contact back in and trim some of this tissue that's pretty much trying to cover half of his eye.  SO- whenever they call with a room- we go.  Until then, I give morphine and motrin and eye ointment.  Last time we did bloodwork, his WBC (indicates infection) was still very elevated.  So I want to contribute him STILL feeling yucky to an infection somewhere that we didn't treat.  He still runs some low grade temps at times when I catch him in between motrin doses.  I personally think that he probably needs IV antibiotics... but that thought makes me nauseous.  So we will probably be doing some more bloodwork soon, I would think.  I haven't talked to Dr. Defusco lately... but I'm sure I will soon. 

OH- I almost forgot-- When I weighed him today, he was 20 lbs, 8 oz.  Yay!  This is good (for him-remember, that is what he weighs with at least 2 pounds of bandaging on). But, it means he's putting some of the weight back on that he lost all of those weeks he was SO sick.  Please pray that this continues- he has A LOT of catching up to do... skinny little thang. 

But anyway, these are some videos that I've taken within the past 1-2 weeks when I can catch him in a good mood:)  Hope you enjoy... and ignore my irritating voice (if I could mute them, I would. ugh).  

This is what poor Mommy gets when she asks him for a kiss:( 
Rotten little boy.

Signing "hat"... but only when you tell him not to.
Again, rotten little boy.




Monday, November 1, 2010

Halloween with the Ringgolds!

It's a bird... It's a plane.... IT'S 
S  U  P  E  R  M  A  N  !!

Well, we finally got to meet Ringgolds!!  I'm sure most of you know who I am talking about, but if you don't- they are Bella's mommy, daddy, and big sister.  They are making quite a road trip after leaving Minneapolis.  I didn't blog about them coming, because I didn't want them to feel obligated if they didn't have time- but I am SO glad they made time to see us!  They traveled through Kentucky, North Carolina (and got to meet Jonah, Patrice and Matt:), Atlanta, New Orleans (and Ponchatoula to meet us:), and now they are off to Texas and then back home to California.  They got here at about 8 pm, spent the night with us, and left at about 10 am this morning.  My mom made them chicken and andouille gumbo last night, and my dad made them beingnets for breakfast!  A little taste of Louisiana :)  It was SO SO nice to get to meet them and spend some time with them.  And honestly, it felt like we've known each other for years.  They are such an amazing family.  

Before the Ringgolds came to Ponchatoula, they went to the French Quarter for Halloween and got to get "that" experience! Haha.  They dressed up as superheroes- Superman, Wonder Woman, and Wonder Girl.  And they were SO darn cute!!  They said Ali stole the show in New Orleans- everyone wanted to take their picture.  When they got to Ponchatoula, it was already too late for Trick or Treating in the subdivisions, so my dad took them around to all our family's houses to get some candy, while we bathed Tripp-man.  

Tripp LOVED Ali.  He was in total awe of her.  And Ali was AMAZING with Tripp (she was so gentle and so sweet).  And she told my dad, "I have experience being gentle with EB babies."  Talk about MELT your heart, right?  Ali is beautiful- blond ringlets and reminds me of Goldilocks :)  She is wise beyond her years and surely kept us laughing!  She brought some beads back for Tripp and he just loved them.  

And Tripp loved Tim's singing... it was a nice change for him to have a man singing to him- and he just gave him the "stare."  

Well, I want to send out a HUGE thank you to everyone who participated in EB Awareness Week.  Whether you sent me questions, posted something about EB on your facebook or made Tripp your profile picture, or whether you just told anyone about EB or about Tripp.  I TRULY appreciate your help in spreading awareness about this horrible disease!  I love you all and I am so blessed to have so much support from so many people.   Hope you have a great week!!