I think he's known it all along...

I know I've been needing to update, but it's just been about finding the time to sit and gather my thoughts... which have been ALL over the place lately.  So where shall I start?  I think my last post (other than the poem) left off saying that little Tripp man was doing okay, and being a little fussy ham.  I know you all know that very gradually over these past 2 years, Tripp has only gotten worse.  And in the past few months, his play-time has gotten to be less and less.  But in the past week, he has pretty much spiraled down-hill and we just can't figure it out.  

At the beginning of last week, he started running fevers.  He always runs fevers, (he's constantly battling some type of infection) but these fevers were between 103.0-105.2, which he has NEVER run.  We (Dr. D and I) juggled around the possibility of the hospital, but had not made a decision yet.  We thought about the home health nurse trying to start the IV antibiotics at home, but then realized that this wouldn't be the best idea- considering that he probably would not leave it in and he would need the antibitotics around the clock.  SO, she waited until Tuesday night when his temperature dropped between 93.0-95.0 (which was really odd, but can be a possible sign of a blood infection) before she decideed to have him admitted.  

Now I will remind you that Tripp has not left this house since October of last year- at all.  That was the last time he had been admitted to the hospital.  He: 

1. Cannot go more than about 5 minutes without his humdified air on (and this machine cannot be plugged into the adapter in my car, it's too big). 

2.  Would never ever let us put him in his carseat for a 45 min drive- no way, no how.... air or no air.

SO- it was either:

1. Call an ambulance (which makes me nervous just typing it), or

2. Borrow a big RV from my dad's work where we could take Tripp's rocking chair with us.

AND #2 IT IS.

The ride there definitely went better than I would have expected.  Without that rocking chair, though, we would have been up a creek without a paddle:)  The ride was pretty bumpy... and on the way there Tripp was so nervous that he kept switching between my mom and me.  And being that we both get carsick even in the passenger seat of a car, we were both pretty nauseous by the time we got there.  

We went straight in to the ER, no wait... they checked us in and took us straight into a room.  Meanwhile (from the RV to the room- which was just about a total of 5 minutes)- Tripp was FREAKING out.  He was so scared and so confused.  And as soon as we got him into the room, the staff brought in a rocking chair, and he settled down quickly.  

I just cannot say enough about the staff at Ochsner on Jefferson.  Never once have we gone in and had any type of bad experience.  Dr. D always calls ahead and lets the ER doctor know we are coming, so the doctors and nurses are always more than accomodating to us.  They started the IV in his head.  We had to hold his little hands down while he was in the rocking chair and while he cried (but overall he was such an angel).  After we got the IV in and secured (with his special tape), he was SO good.  He would try to feel it and I would say, "That's just some tape, buddy." and he would put his hand down and leave it alone.  

He got his first doses of 2 types of IV antibiotics (and bloodwork drawn) and then they admitted us onto the Pediatric unit (which I can also never say ENOUGH good things about).  They all know us by name and treat us like royalty (really).  And the pediatric doctor on call that night was Dr. Fogarasi- whom we ADORE.  We didn't get in the room until about 3-4 the next morning and then after getting situated, cleaning the room, fixing his bed, cleaning him up, and then showering ourselves- we didn't get in bed until after 5 that morning.  And all of that time, Tripp left his IV in his poor little head.  And then, I'm assuming as soon as we finally fell asleep- he ripped it out.  Because when I woke up at 7 that morning, it was lying right next to his head:)  

So then there were decisions to be made.  Were we going to start a new IV to give him the rest of his antibiotics when he would probably just pull it out again?  Were we going to keep him in the hospital where is SO anxious and out of his comfort zone to treat him for something that would just come right back?  The pediatrician on call decided that she did not want us in the hospital.  She wanted us to be home in our environment, where Tripp would be comfortable.  The plan was to take him home on antibiotic injections (which is pretty much the only option left now that he is resistant to almost every oral antibiotic).

Dr. D decided that she wanted me to talk with the PICU doctor, Dr. Finger, while we were in the hospital.  She wanted him to give his opinon on where we should go from here.  So Dr. Finger came and spoke with my mom, dad, and me.  It was rough, I have to admit.  He (in a nutshell) said that he thinks that we are at the point where we are doing things TO him instead of FOR him.  He said that if we ever admitted Tripp into the PICU and wanted us to stick an IV in his head, or give him an antibiotic shots- that he would not do it.  He said that in his opinion, to inflict pain on him (such as shots and needles) just  trying to rid an infection that is going to come right back- is almost cruel.  He made it a point to ask me if I thought that he was getting worse- and of course I said yes.  Especially his skin.  

He didn't want us to make any decision right then and there, but just to think about what he said.  And honestly, everything he talked about is exactly what I've been feeling over the past few months.  When it's his time (whenever that may be), I've always said that I would keep him at home and keep him comfortable.  And doing anything that causes him MORE pain when we are trying to treat an infection that is going to come right back the second we are finished treating it... is not my idea of comfortable.  

So where are we now?  We are home, of course.  

And we are working on his comfort.  We have done a number of things in the past week.  And by we, I mean Dr. Defusco, Trea Landry (CVS), Don Fellows (Central Drugs), and I.  In the past week, we have  started 2 new pain medications and 2 new anxiety medications.  Baths have been, of course, worse than EVER.  There are absolutely no words to even begin to express bathtime.  I'll just leave it at that.  And now diaper changes are just as bad as bathtime, they just don't last as long.  Tripp has been getting an ungodly amount of pain medicine in the past few days.  And we still have not gotten him to the point where he is comfortable when you move him (or of course bathe him or change him).  Now don't take that the wrong way- for the past week, he has spent every day pretty much knocked out in the rocking chair, not even being able to say "more" or "yes."  But when we go to move him, sit him up, or switch positions- he starts trembling in pain.

Ready for just a little "good" news?  My sister is in town!!  She flew in last Sunday and is staying until next Tuesday.  I am so happy to have her here.  I really needed her.  So did my mom:) 

I'm trying not to even think about her having to fly back to North Dakota... that is not going to be a good day.  

I really do not know what I would do without Tripp's doctor and pharmacists.  Honestly, they are more like friends/family to us.  Even if I tried, I would never be able to thank them enough for what they are doing for Tripp.  They are working together 24/7, racking their brains, helping each other, seeking help from other healthcare professionals, and trying to figure out how to make my little man as comfortable as possible.  Dr. Defusco is coming to the house, calling me every day, and working so hard for Tripp WHILE she is juggling her other patients (it just seems to me like she wouldn't even have time for anyone else with the time she is putting in for Tripp).  I have the utmost respect for her for being the best doctor we could have ever hoped for.  And Trea Landry (Tripp's pharmacist at CVS) has been like family to us.  He and his wonderful wife (who is also a pharmacist) check on Tripp every day.  He drops off prescriptions to our house, and hardly ever comes without bringing us food or asking what else we need.  He has spent the last week also racking his brain trying to figure out how to make Tripp more comfortable.  He and Dr. Defusco both have been by the phone- 24/7 waiting to see if I need anything. 

I love them.  And feel so so blessed to have them in our lives. 

This was his bottom in the hospital a week ago- it is worse now, with more redness and drainage from his wounds.

I realize that this may be hard to look at, but I just want everyone to know that this is not even 1/4 of his pain.  His legs are covered in these same wounds, as well as his neck, face, hands, feet, etc.  The picture that I last posted of his little leg in my earlier post was the "good" side of his leg:(

This little saint is having to endure an unbelivable amount of pain- and since his pain and wounds have only gotten worse and not better in the past days/months/year... I think it is only fair to my little angel to finally do the best we can to make him as comfortable and pain-free as possible.  

Is this an easy decision?

NO WHERE CLOSE.  

Am I clinging to my faith and trust in God now, more than ever? 

YOU BET I AM.   

 I have known since Tripp was about 2-3 months old that I should expect to outlive him.  

And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would.  I could not even begin to count or explain the amount of emotions that have gone through my body through these past years... wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn't have to suffer anymore.  

And as many times as these emotions have felt- there is no way I could begin to explain what I am feeling at this point.  

Is this just another hill we have to climb and he's going to shake this and start to fuss us again?  

Or is this starting the events that I have dreaded and cried over for the past 2 years? 

I don't know, you don't know, the doctors don't know... only God knows.  

And I have accepted that with everything left in me.  

I have totally turned it over to Him.  

I realize that I was chosen to be Tripp's mother for his time here on Earth. 

And like both of the priests that I have talked to in the past two days have said- Tripp was chosen to carry this cross.  He is a disciple of Jesus and is truly a saint.  One priest stated that we should be praying TO Tripp instead of FOR him, because he is truly blessed by God and has a special place right next to Him in heaven.  I truly believe this in my heart.  

But of course, nothing in the world can ease the pain of watching your child suffer and knowing that "keeping him comfortable" is the first step in letting him go. 

My prayers now are for God to do His WILL- not MINE.  

My prayers are to the Blessed Mother Mary to give us comfort. 

GOD BLESS each and every one of you who have reached out to our family 

(thoughts, prayers, emails, food, phone calls, ETC). 

I am overwhelmed by the amount of lives that my little man has touched. 

I don't think Tripp is suprised, though... 

I think he's known it all along. 

Love,

I'll need a Pinky-swear

As he lies in my lap

And together we sway

I rock him to sleep 

And meanwhile I pray:

"Dear God, I know you can see us

And you're watching from above

Filled with sadness for him, as we are,

And equally in love.

I've never once asked You "why?"

Nor questioned if You were near. 

But I do have one request tonight, 

I pray that you will hear. 

When it's time for You to call him home, 

And my hope turns into despair,

I will need more than a promise from You,

I'll need a pinky-swear...

That you will hold him close to Your chest,

And say "I love you" all day long.

That you will rock him 'til your knees get sore,

And sing his favorite songs.

Tell me that You'll keep him safe,

So I will not be distressed.

Tell me that he'll will get his wings

And tell me he'll be blessed.

Let me know he made it safely,

Without a single blister or bleed,

Let me know that you will do MY job,

To fulfill his every need.

I have to know that you will love him,

Just as much, or more, than I do.

And when he finally speaks a word,

That You'll record it so I can hear, too.

My buddy is going to need Your help,

With so much yet to learn.

Like using a spoon, writing his name,

And having to wait his turn. 

God, please be patient when he tries,

For he's such a sweet and loving boy.

Please give him every thing he wants,

But make sure he shares his toys.

These are things I'll miss out on,

Like no Mommy should have to do. 

So don't let one milestone go unnoticed,

Please, I'm begging You.

He likes Elmo's ducks, The Three little Pigs,

Shoo Fly and Counting to Four.

Big Green Tractor, Rise and Shine. 

And when they stop, he'll tell you "more."

He holds certain toys in certain hands, 

And says yes with a big smile.

Please spend some extra special time,

And talk with him awhile.  

It breaks my heart to have to think

That he won't graduate from school. 

Or go to prom, or have kids of his own,

Or even break a single rule.

Tell him for me- please don't forget,

That I wanted him to stay. 

That I tried and tried to ease his pain,

But it was only YOU who knew the way.

I know you have a choir of angels,

Who play music while they fly.

And if they need a drummer boy-

Well, my Tripp, he's their guy!

You've probably seen it for yourself,

That he's one brave kid, indeed.

But he'll be scared if You have to leave,

So stay with him, I plead. 

If he has to go to Heaven first,

I'll make one promise back to You- 

I'll miss him every second he's gone, 

And spend the rest of my life trying to get there, too.

I hope that's not too much to ask,

And I trust You'll do your best. 

To fill my spot, just temporary, 

And answer my requests.

Thank in advance, Dear God.

Because I know You're a busy man. 

I trust in You and in Your Will

And know You have a plan."

Words just simply can't express

To my only son who just turned two-

How very much my heart will ache

If that rocking chair is without you.

So dear sweet angel baby of mine, 

If we ever have to say goodbye...

I'll rock you in my heart forever, 

Until we meet again in the sky. 

Written by Mommy

7/14/11

Elmo had four ducks... quack, quack, quack, quack!

This song has played in Tripp's DVD player so many times in the past week that it's the only possible thing that I can think of for a title.  It's all I hear ringing in my brain all day long.  I even dream about Elmo's darn ducks... 

Little man has been SO high maintenance lately, bless his little angel heart (and to some of you up North, I know "Bless your heart" means something ugly... but to me it literally means "Bless his heart"- I'm not cursing my child :) haha.  He knows exactly what song/CD he wants to listen to- it's just the "us figuring out which one he wants" part that is tricky.  About 95% of the time, it's Elmo's Ducks... but every now and then he likes to switch it up and we have to guess which one he wants until he finally smiles (which means "yes").  And he may only want to listen to one song on that CD once or maybe 25 times in a row, then on to the next.  

And then the next game is figuring out what he wants in his hands to hold (while he's rocking).  He only hold certain toys together at the same time, and only hold certain ones in each hand.  For example, when he holds Big Bird and Elmo together, Big Bird has to be in the right and and Elmo in the left.  

  And usually we can guess easier by what he's holding in his hands.  If he has a duck- it's "Elmo's ducks", Big Bird- it's "Big Bird's song," Ernie and Elmo- it's "One Fine Face" (a song that Elmo and Ernie sing together.  Get my drift?  Ok, now I know that you guys officially think I'm losing it.  Don't worry... I think I am, too.  Actually, I'm positive that I am, little by little. 

Oh my little sweet man is breaking my heart these days.  The days are passing by so fast... and not only is his disease progressing and his sores and things getting worse, but I'm having a lot of guilt for not have taken the proper steps "education-wise."  I feel like I should have been having speech therapy, physical therapy, and occupational therapy in here over a year ago.  We had OT while we were living in Norco, but after the move, I never contacted anyone to get them here.  And yes, I know I've had A LOT going on and on my plate, but that's no excuse.  Little man's needs should have come first.  I'm in the process of getting them in now.  Better late than never, I guess.  

Hopefully they will be able to help us a lot with the "communication" part.  It's so frustrating for Tripp and sad for us when he's trying to tell us something that he wants and we can't understand.  He's older now and VERY opinionated (I know, surprise surprise), so we need to have a better means of communication going on other than just "guessing" what he wants.  I'm hoping we can try some type of comunication board.  

Medically, I would say right now (today) he is stable.  Our sweet,  super awesome home health nurse, Kati came last week to draw Tripp's blood again.  Everything went really well- I was VERY impressed at how good she was (but wasn't really nervous at all because she works in the PICU at Children's hospital).  Anyway... we got the results back :

BUN- 33    Normal 6-22

Albumin- 5.1     Normal- 6.3-8.2

WBC- 22.7    Normal- 6-17

HGB- 10.9    Normal- 11.3-14.1

And a few other labs were just a little off- but overall I was VERY impressed considering everything he has going on how well his labs actually were.  

E X C E P T:

His Platelet Count was 1.322 million.

The normal range is 140-400 thousand. 

The last time we drew his labs in October, his platelets were at 900 thousand and Dr. Defusco was very concerned- so I'm not quite sure what she's going to say or what we are going to do about it.  I haven't heard from her since we've gotten the results back because she's on a VERY deserving vacation! :)

Your platelets are what help your blood to clot when you cut yourself or damage a blood vessel in any way. 

 I am no doctor, nor am I a platelet count expert- but I am a nurse, so I do know that a very high platelet count means thicker blood, which means less circulation, which means a high risk for a thrombosis (a blood clot), which could cause a stroke or heart attack.  In Tripp's case, I think it could have a lot to do with why he has so much trouble breathing and why he is so short-winded when he stands up to play.  A higher number of platelets are common in EB and other things such as anemia (which he has as well), leukemia, cancers.  I guess it's the body's way of adjusting.  And in EB, it's almost a good thing, because when Tripp has a bleed, it almost stops immediately.  Otherwise, he would be losing a lot more blood than he is now.  BUT, being THAT high is not good- and I'm thinking could get borderline pretty serious.  But I'll have to wait and talk to Dr. D and let you guys know what she says.  

Baths have been bad again.  Not so much the "in-between" part, but the beginning and the end now (for some reason) are just horrible.  Lately when we sit him up to do his arms, he just cries and cries and makes himself so upset.  I encourage anyone who wants to know the true meaning of pain and suffering to come join us for Tripp's bath.  I would rather someone cut of my right arm every other day than have to put him through that.  I'm serious.  Mom and I have to psyche ourselves up mentally before we do it.  And I know it's the scariest, most awful thing for Tripp.  I hate that for him.  I get a sick feeling in my stomach on every bath day.  And I know he can sense when it's bath time, too. 

But things are just okay around here as far as Tripp is concerned.  The days just consist of making him as confortable as possible and doing anything we can to make him smile.  

Thank you all again for the continued love, prayers and support.     

Just one side of my poor baby's leg.  

See why he gets whatever he wants?? :(

Love,

I know I'm a slacker, but don't give up on me.

Life is too short to wake up with regrets.  So love the people who treat you right.  Forget about the ones who don't.  Believe that things happen for a reason.  If you get a second chance, grab it with both hands.  If it changes your life, let it.  Nobody said life would be easy, they just promised it would be worth it.

-Unknown

First, I want to thank all of the wonderful people who have been supporting us, contacting us, praying for us, and loving us.  It is completely humbling.  And for some reason, it seems like I have received more e-mails, facebook messages, and cards in the mail this past week than I ever have... mostly from perfect strangers just letting me know that we are in their prayers!  You guys are just amazing.  I really don't know what to say anymore.  If it weren't for all of you, I don't know how we would keep pushing on each day.  Because like I've always said- I need to keep myself happy and healthy so that I can keep Tripp happy and healthy (well, as healthy as possible!).  We are blessed beyond words to have such an amazing group of supporters- I wish I could do something in return for each and every one of you.  I just wish I had the time to sit down and write each one of you back! 

So I know it's been a while since I've posted, and I'm sorry.  The last time I wrote,  Dr. D was making a house call to come and draw Tripp's blood for labwork.  Well, all went great while she was here- we talked and visited for a while about everything that's been going on with him.  And then we laid him on the table, with my mom holding his feet, me holding his arms and head, Dr. D sticking him, and my brother's girlfriend Ashley helping her put the blood into the different tubes.  Tripp was, of course, ticked off... but did so well (AS ALWAYS)- he's nothing short of a saint.  BUT when Dr. D had got the blood back to the lab, it had clotted and they couldn't read it :(  She was so upset- and I felt so bad because she did such a great job getting it (and not to mention she made a special trip to the house to draw it).  

So that's when she decided that we needed a home health nurse.  And she called to set it up for us last week.  So we now have CareLink Home Health.  Our nurse's name is Kati and I LOVE HER! (she is another reason that I know God is watching out for us).  She's great and I know we will get along just fine!  Right now, Kati just comes once a week to "check in" and see how Tripp is doing and to see it we need anything.  She will be re-drawing all of Tripp's labwork next week.  And the best thing about having a home health nurse now- is that if Tripp ever gets an infection bad enough to where he needs IV antibiotics- she can give them to him AT HOME!  You can't get any better than that.  Especially when I'm terrified of going into the hospital because I have this nauseating feeling that if we go in, we won't come back out.  That was amazing news for me!  So I'm really excited about having Kati now:)  Hopefully Tripp will warm up to her- he just knows her now as the girl that comes in and puts a stethescope on his chest, which he just WILL NOT have.  But I'll save the talk on his little rotten behavior later:)

He's really not been feeling good.  He's about to finish a SECOND round of antibiotics (back to back) that Dr. D started again when she was here (just because he was feeling so yucky and we were out of other options).  And usually the antibiotics make him feel better, but this time they didn't.  He had a span of about 4 days at the end of last week and through the weekend where he was breathing AWFUL again.  One night last week I swear we didn't sleep 10 minutes straight all through the night.  His breathing would sound exactly like a whistle.  And he was back to pulling from his chest and struggling for air.  I immediately went back up on the steroids, started breathing treatments, and gave him oxygen as needed.  It was really bad for about 2 days, and is gradually getting a little bit better.  But he still cannot stand up to play for more than about 5-10 minutes without wheezing and needing his "air."  It's always hard to tell with him if it's his airway swelling up again from some type of blister/irritation or if it's some type of cold/allergy.  Hopefully he can shake this soon and be back to his playful self.  He hasn't played much at ALL in the past 2 weeks:(

His eyes are almost completely shut.  There is a teeny tiny strip left where you can still tell if they're actually opened or not- but it's still covered in skin (you can't see his eyeballs at all).  His mouth is still horrible- sores covering his tongue now too, because all he does is chew on it!  That has to just be the worst pain ever- I can't even imagine.  His arms look good, his torso looks good (about the same as it's been in the past 6-8 months), but his legs and butt look terrible.  I don't know if it's because he's been kicking his legs, or rubbing his legs together or what- but he's got about one strip of "skin" on the top of his shins- but his calves are raw.  His little hands are the worst they've ever been!  He never even had any blisters on his hands (other than his raw nailbeds) until a few months ago.  They just keep popping up like crazy.  We thought it was just the heat, but now that the house has been at 68-69 degrees all day and he's still getting them, I don't think that's the case.  And last, his poor little neck and head are so raw and itchy.  I recently started using a Silveadine cream (with Silver in it:) on his neck to try and keep the psedomonas under control and that seems to be working pretty well.  I also recently switched back to the Baby Ecezma Cream that I was using a while back (not sure why I stopped)- but that seems to be helping a little with the "itching" too.  Oh, and I'm using the Aveeno oatmeal bath packets that my mom picked up from Walgreens in the bath water (along with salt and Baby Ecezma Wash) and that has helped his baths a little (I think)- of couse he is still hysterical, but you can tell that he doesn't shake in pain like before.  Hoping it's not just a fluke and it really feels a tad bit better! 

And now to the personality... O man.  What a little firecracker we are creating over here.  He's hilarious and mean- and we condone it.  It's just to darn cute not to.  And frankly, if something makes him smile- we will do it 457 million times if we have to (I'm pretty sure that's how many times we listened to Elmo's Ducks today, too).  And he started doing this in the past couple of days- If you ask him "Do you like to be nice?"  He shakes his head no.  "Do you like to be sweet?"  He shakes his head no.  "Do you like to be kind??"  Again, shakes no.  Then you ask "Do you like to be MEAN?"  And he gives the biggest grin you've ever seen.  It's too cute!  And he's now replaced "Shoo-Fly" with the LSU song.  He will use anything to make music or noise.  And I am so serious when I say that he can click his tongue or bang his drumstick to the tune of EVERY song on the "Best of Elmo 2" DVD (along with any song he hears just once- no lie).  He definitely became musically gifted the second he started losing his eyesight.  It's incredible and heart-warming to watch.  He makes me so very proud.  

And for those of you who don't think he is an angel yet, get this... every time he does stand up to play, when he's finished and ready to get back in the rocking chair-  he will first pick up his toys that are on his table, one by one, and walk to his toy basket and toss them in.  He picks up his toys:(  Such a sweet sweet boy.  I love him more than life.  He actually made me cry doing this the other day!  (I guess I'm a little emotional lately too:)  And he probably just does it for the simple fact that he's trying to make it a point that he's done playing and wants me to pick him up- but I look at it as he's being a good boy and picking up his toys:)

So, I am trying to focus on all of the positives that we have going on right now- like all the great people in our lives.  It's so incredibly hard, though, to know deep down that each day Tripp is getting worse and worse.  We need awareness and we need a cure.  And that's why we need all of you.  I can't tell you how many times a day I get note or an e-mail from someone else who just "found" Tripp's story.  It's INCREDIBLE.  And I hope it continues until everyone in the world knows about EB and what it does to these poor precious innocent children.  It's ripping out little pieces of my heart day by day to watch what this is doing to my son.  And the hardest part- not letting it show.  I know in my heart that I can't fix it- so I know that being depressed and sad about it every day is not going to do anyone any good- especially Tripp (who deserves the most happiness of anyone I know).  So that's my prayer request (besides prayers for Tripp, of course:) - that I can "keep on keeping on" no matter what obstacles arise, so that I can be the strong one and continue to hold all the pieces of this crazy puzzle together.  

I love you guys.  

Thank you again for loving my little man.  

One of my favorite pictures of all time. 

This was last July... almost a year ago already!

Love,

Choose your own title :)

Man, oh, man.  Where to begin? 

Let's start negative, so we can end positive... shall we?

Tripp is back to his- sleeping all day, not wanting to play, infection bearing- self.  As I predicted, about 2-3 days after he got off of the antibiotics, he started slowly going downhill again.  And he didn't start feeling really bad until a few days ago.  Probably in the past 3 days, he's stood up to play about a total of 30-45 min.  He will try, and will play for a little bit, then just want to be back in the rocker. 

He's been sleeping late... like 2-3:00 in the afternoon late.  He always does that when he's sick and got something going on.  And with whatever he has going on... he has turned into a FUSSING MACHINE.  The child even fusses himself- I'm not kidding.  I guess fussing (the "hissing" noise he makes with his trach as he slaps at you) is his only way of defending himself and communicating with us.  And now that his eyesight is gone, he is sure getting good at "defending himself."  

His SAINT of a pediatrician, Dr. Defusco, offered (without me asking) to make another house call today... on a SUNDAY.  She's bringing all the stuff we need to draw blood and finally get some bloodwork done.  I think it's been since October (the last time we were in the hospital) since he's had bloodwork done.  So I'm anxious/nervous to see where he stands as far as being anemic, platelets (clotting), and infection is concerned.  And this is all IF we can get it drawn and IF he cooperates.  Dr. Defusco also called yesterday and started him on the same antibiotic that he was on a couple weeks ago.  She said that she feels in her gut, that if he's feeling so much better when he's on antibiotics, that we should keep giving them.  The only problem with that is the more he takes them, the better chance of the bug getting smart and being resistant to the antibiotic- which would mean the only other option to treat his infections would be IV antibiotics in the hospital.  But Dr. Defusco and I have always been on the same page from day one- Tripp's "quality of life" is more important than ANYTHING.  I will not magnify his pain or misery, just to prolong his life.  I want him to be happy and comfortable and as pain-free as possible.  And we will deal with running out of options when we get to that point (as I've known from the beginning that we will one day have to do).  

  

So I haven't used this blog as a means to vent on my personal issues, and I don't intend to start yet.  However, there have been so many questions about what's going on in my personal life that I feel obliged to let you in on the big details only (TRUST ME- You do not want to know the other details). Randy and I have been living apart and separated since last July and our divorce will be final this coming July (next month).  And ALL I will say is that things are NOT going well and have been difficult for everyone involved.  I would appreciate your prayers for understanding and forgiveness.  I will need them to get through this with just a little bit of sanity left so that I can continue to move forward.

I know that the statistics were in our favor with a special needs child, but I want to clarify that this was not something that was just given up on.  There were/are other obstacles than Tripp that were/are still involved.  Thank you for your prayers for us all.

On a different note, we had something interesting happen over here this week.  My grandma (my dad's mom) has an apartment that was added on to my parents house a few years ago so she could be close.  Well, during the "storm" we had this week, she was talking on her phone (her CORDED phone) when lightining struck through her roof, into her attic, and hit her phone line.  We didn't SEE it happen (obviously) but she said it jerked her arm and made the phone fly out of her hand.  She's okay- she just can't really move her arm.  My dad took her to the hospital and they ran every test imaginable for 2 days, while my mom and dad worked hard over here to get the hole in her roof fixed, along with her A/C, electricity, cable, etc... back up and running. 

Our luck, I know... Enter this house at your own risk!

So for a positive note....

Hmm...........

Well, we got a whole new air condition unit put in at my mom's, I guess that's one positive thing.  Her old unit just wasn't keeping up (like a lot of units here in Louisiana do in the summer), but with Tripp here- that wasn't cutting it.  If we were comfortable, we knew he was sweating and miserable.  So now it is borderline FREEZING in here- and little man is finally comfortable and getting less new blisters a day.  We just bundle up in long-sleeves and robes. 

There's not too much more positive going on around here... except for all the wonderful people that I have in my life that are getting me through all of these hard times.  I need happiness and sanity to make Tripp happy and comfortable.  And I am so lucky to have those people in my life who make me happy and who would do anything for Tripp and I :)

I will let you guys know what the doctor says and what the bloodwork results are.  

Thank you for your thoughts, prayers, letters, emails, and kind words! 

Once again, we are so blesssed.

Love,

Tripp's Follow-up story on WWL Ch.4

I didn't get much notice that this was coming on... (like I found out TODAY), so in case you missed it- 

here is Tripp's "follow-up" story that WWL Channel 4 News asked to do about Tripp reaching the milestone of 2 years old! 

I was SO excited that they showed Tripp's beautiful face in this one! 

Please visit the WWL website HERE to read the story in text or to watch.

Once again, my dear friend Bill Capo- you did an amazing job of sharing the story of my little man. 

I'm forever grateful to you for wanting to help us spread the word about Tripp and EB. 

Thank you again for being so sincere and so wonderful to us.

Love,

This kid is the BEST.

No hospital for us- we are still home!  I really have no words to describe how tough my little man is.  He possibly could be superhuman.  I do not know where he finds the strength to even smile, much less stand up and play.  His vision is gone... I don't think he can see anything anymore.  And his mouth is beyond horrible.  He lives with infection after infection, covered in raw open sores.  And he can still smile, laugh, play his drum, and cop an attitude with the best of them.  I'm so thankful that he's feeling well enough to play.  And as long as he's feeling well enough to play- we aren't going NEAR the hospital.
Here's a small look at where we've been and where we are now... :(

One month...

One year...

Yesterday... (check out that poor baby's eyes)

See what this horrible disease has done to my man??

I don't know how he still smiles that amazing smile!!!

He's such a miracle.  And to me, just as handsome as ever!

I am guessing the antibiotics helped him because the fevers have stopped and he's feeling well enough to play some during the day.  He finishes up the antibiotics tomorrow.  He's just been sleeping a whole lot lately.  And of course, has no type of schedule whatsoever.  Sometimes he will wake up at 2:00 in the afternoon, sometimes at 8:00 in the morning.  Sometimes he'll go to sleep at 2:00 in the morning, and other times he will get in his bed around 8-9 at night.  It all depends on how he's feeling, how well he sleeps without waking up through the night, and if he takes a nap or not during the day.  

Baths have been tolerable (of course I am not talking about the "water" part- that will NEVER be tolerable for Tripp, my mom, or me).  But the process of putting all the dressings back on has been pretty good the past few baths.  He's been quite the little clown- snapping, clicking his tongue, shaking his little booty... all the little cute things he does while listening to his music.  He instantly feels better after his baths.  He will play and play for sometimes hours after a bath.  His little personality is getting cuter and cuter every day.  Yes, he can be a tad bit mean sometimes... but put a hundred sores on you and take away your eyesight and see how nice you want to be:)  So what do we do when he's mean??  We laugh and encourage it:).... judge if you would like.  We may be creating a monster, but he's the cutest little monster I know. 

My mom is my hero.  Have I mentioned that?  I think a lot of times I take her for granted.  I know not everyone is fortunate enough to have a mom like I do- a mom that is supportive of you no matter what.   She would literally do anything for me.  And she HAS done everything for me these past 2 years.  Starting by driving to Norco (an hour there and an hour home) at least 6 days a week since Tripp was born to help me.  And then last July, welcoming Tripp and I into her home with open arms- no matter what kind of drama and obstacles came with us, while dropping everything to help me with Tripp 24/7 (which would be impossible on my own).  I just assume sometimes that every mom would do these things for their child, when that's not the case.  Thanks Mom- I know these past 10 months have been rough.  Thank you for listening, putting up with my mood swings, and most of all for trusting me enough to step back and let me learn from my own mistakes.  I know I tell you this every day, but it's the truth- I would be in a crazy house if it wasn't for you.  And I appreciate all the sacrifices you make for us. 

And here's some awesome news- between the two posts from Patrice on her blog last week, my last post, and all the people that have shared the Cannell Family's story on Facebook... they have raised approximately $8,000 in close to 10 days.  Their total amount of funds raised is over $16,000!  That is AMAZING.  But we cannot drop the ball yet- they still need around $20,000 more before they can take these boys home!!  SO Please if you haven't donated to this family yet, click 

HERE

and join all of us in bringing Carson and John home!!

Even if it's $5.00- every little bit helps!!

Thank you from the bottom of my heart to all of you who have donated. 

It will be because of you that these boys will have a new and better life. 

I can't wait to see and share pictures of them with their new family!!

Love,

Ok, so I resort to begging...

Please meet

The CANNELL Family

Donnie and Karrie Cannell are from Lodi, CA.

They are a "his/hers/ours" family of TEN.  They have eight children between the two of them.  

Their oldest daughter, Jamie, was born with EB (Dominant Dystrophic) so they have experience in the physical and emotional part of caring for someone with this disease. 

They first found out about Carson through an EB help site called "EBfriends."

This is Carson.  He has EB.

He is in an orphanage in Eastern Europe.

The minute Donnie and Karrie saw him, they knew they wanted to adopt him. 

And through the (long) process of adopting Carson, they recently learned that Carson has an older brother!

His brother's name is John.  He also has EB.

Carson and John were seperated from each other about 2 years ago when John was sent to an institution  because he was too old for the orphanage.  

Donnie and Karrie will be adopting both Carson AND John. 

They are trying to bring these boys back together and home to the states to be a part of their family.

Here they are before they were seperated.

These boys HAVE EB. 

They are living without parents and without each other in an orphanage and an institution. 

SO... you might ask, "What's the problem?" 

The Cannell Family have already raised 

$11,360 towards adopting these boys.

They need about $35,000 more. 

They are working SO hard with tons of small fundraisers here and there. 

It's just not enough and not fast enough.  

Here's why:

THEIR PAPERWORK HAS OFFICIALLY BEEN SUBMITTED!!

The next step for them is their travel date!

This is HUGE. 

They could be traveling to their boys in a week to 4 weeks.

BUT...

They cannot bring these boys home without these funds. 

That is the only thing in the way of Carson and John coming home to the states to be with their new family.

So instead of all these small fundraisers that this family has been doing in the past 6 months (auctions, garage sales, scentsy parties, pancake breakfasts... etc), let's ALL come together to help them.

AND FAST!!

So here's the deal. 

And I'm just as guilty as anyone. 

(And I FEEL guilty for even asking this after everyone has been so generous to me)

But think about your most recent trip to the mall, or Target, or Wal Mart, where ever...

Think about that one thing that you bought after you said, "Do I really need this?" 

But you bought it anyway, right?  Of course.  We all do.  

Well I'm asking you... Ok, I'm BEGGING you- 

Take that $5, that $10, that $20- whatever you can- 

and click 

HERE

Then click the link on this family's page and donate that amount to them. 

They are trying to save these little boy's lives.  

They are trying to bring them home to a real family and show them what it feels like to be LOVED.

If you can help this family family save these boys by just going without that "one little thing" that you can't decide if you want to buy or not- PLEASE do.  PLEASE. 

This family has asked for my help in doing this-

so I'm asking for yours.  

I want so bad to get the email from Donnie and Karrie that they are holding their two boys in their arms.

And that their kids are playing and enjoying their new brothers.  

When I share that e-mail here on this blog again, 

I hope you can say that you helped bring those boys home.

Please help these boys become Carson and John Cannell.

I have 610 followers on this blog. 

If you each gave them $5- that would be $3,050.

$10- $6,100

$20- $12,200

GET MY DRIFT?? 

That would be huge to them!!

ANY amount would be huge to this amazing family!!

Please go to their page, and click on the link to donate. 

GO, GO, GO... 

PLEASE

and 

THANK YOU:) 

And if you don't want to donate through the link on their page, 

you can e-mail me and I can give you their address to mail a check directly to their home. 

Love,

Dr. D's house call and updates.

Little monster man is my hero!  I could tell last week that he was catching something.  Sleeping more, throwing up a little here and there, thick trach secretions... but he continues to amaze me at how he doesn't let anything keep him down.  He's still been up playing his drums, shaking his little booty, and letting Papa ride him on his horsey in the evenings (now that's cute).  All the while, his little bo-bos are draining more and he's been running fevers.  

So once again, on Tuesday of last week, Tripp's amazing, wonderful, awesome pediatrician Dr. Defusco made a house call.  This time bringing all the necessary things for us to cultures his wounds, etc... and also brought him some cool birthday presents.  Yes, you can be jealous- she is the best:)  I planned bath around her visit, because she's never seen an entire bath from start to finish.  I wanted her to be able to see all of his wounds, our bath process and how everything works.  I feel so honored that she would take so much time out of her very busy schedule to drive an hour both ways to spend the afternoon with Tripp.  Tripp was super nervous and suspicious of her voice at first... and then when she was still here after he got out of the tub and singing songs with him... he warmed up to her pretty fast.  He even made her snap an click her tongue to the songs:)  THAT is the definition of a great doctor- no matter how long he/she has been practicing, or how much they know without having to research the books- it's all about going out of your way and caring for your patients.  And she's got that mastered.  

While she was here, we took about 5 cultures (neck, trach secretions, buttocks, leg wound, ear) and  a stool sample.  And I knew something was wrong when he slept until 6:30 PM on Friday- YES, in the bed- from the night- not even hardly moving!!  Then yesterday morning he was running 101.2 temperature.  So I was happy when the results came back yesterday so we could find out what was going on... but of course he's got pseudomonas everywhere.  And it's the hardest bug to prevent and treat (in my opinion).  In some areas that we cultured, an oral antibiotic will treat the pseudomonas- so he's started an oral antibiotic yesterday.  But in his ear, there is only one type of drop that the pseudomonas is sensitive to (which means it will treat) but if that drop doesn't work and his fevers continue, we will have to admit him into the hospital for bloodwork and IV antibiotics (to make sure the bug doesn't get into his bloodstream).  So I'm hoping we will know by early this coming week if it's helping.

  No matter how careful and clean we are, it seems he's always going to have something going on, especially since he's getting more and more open sores daily.  But that's not going to stop us from being hand-washing Nazi's.  I made all new signs- for the back door, over the sink, in the bathroom.  I'm even going to start asking people to take off their shoes when they come in.  I mean, think about it... your shoes are the dirtiest, most disgusting things.  No telling where you've stepped or what you've stepped in.  I should've done that a long time ago, I know.  But it just seems like some people still don't get it.  I know that I wouldn't want the bug I pass on to Tripp's open sore to get into his bloodstream and cause him to be in the hospital.  You know?? ... But I guess not everyone thinks like that.  So I'm here to remind them:)  And it doesn't matter if you just left home and took a shower or if you washed your hands before you left the house... did you touch the door handle? or your steering wheel? or the buttons on your car radio???  All of those places have germs.  And when you come out of the bathroom... I mean REALLY- does that even have to be explained??  So before you touch my little pumpkin's toys... SCRUB HARD. 

So last week... before Tripp's birthday, Mr. Bill Capo (from WWL Ch 4) came back to the house.  He had been asking for a while if they could do a follow-up story on the response we got from the "Angel Baby" broadcast and I just hadn't been up for it... too much going on.  But when he called this past time, he convinced me to let them come.  They wanted to do a story on Tripp turning 2 as well.  So they came and did an interview with me and they were going to try and get Tripp up and playing- but he was not having it.  He was so suspicious of the two strange voices in here and the big lights.  And he knew we were trying to intice him with the drums for a reason.  He stayed in that rocking chair and wanted nothing to do with them:(  I don't know when the follow-up story will air yet- he hasn't told me.  But with all the flooding going on, it will have to wait!  I'll let you guys know:)

We are also in search of some cool toys for visually impaired kids, so if anyone has anymore ideas, please either e-mail me or leave it in the comments!  We would appreciate the suggestions!  Tripp's eyesight is pretty much gone.  I think he can still see shadows and bright lights, but I can tell it gets worse and worse each day.  But he has adapted SO well.  He knows where everything is in his one little area.  He knows exactly what something is the second you place it in his hand and he knows exactly where to find any button on any toy.  His sense of hearing has really stepped up it's game, too.  We just have to pray his little ear canal stays open enough for him to at least be able to hear- his right ear canal is so tiny and trying to close up (I think because he always lays on that side- and there's no turning him, he turns right back).  

I want to thank everyone again for the amazing amount of support.  I wish I could list every single person who has helped me either emotionally, financially or physically.  It's over-whelming and I am so SO grateful to each and every one of you.  I won't go into detail on the blog about this... but I want everyone to know how much their kindness and generosity has helped me through these very difficult circumstances that I am under.  I don't know what I would do without the support from such thoughful, selfless people.  I know I say this all the time, but all the good things that have come from Tripp's disease (the amazing people we have met, the lives he has touched and changed) helps me understand just a little why he's having to suffer so much. 

I hope everyone has a great week! 

(This is what happens when you say "Smile for the camera!") 

Little HAM.

Love,