Monday, May 30, 2011

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 
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!!


Thursday, May 26, 2011

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:

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.


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.

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 
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
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... 


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. 


Sunday, May 22, 2011

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.


Monday, May 16, 2011

Birthday pictures and a video.

When we celebrated Tripp's birthday last Tuesday when my sister was here, we also had a photographer/friend (Summer Boyd from Summer Boyd Photography) come to the house to take some pictures.  Since my sister was in town and my brother was coming in from Baton Rouge, we thought it would be nice to get some family pictures done... since we've never had any!  But while Summer was here, she also took some snapshots of Tripp with his cake.  Thank you Summer!!  My aunt Mary made his cake again this year.  Wasn't it cute??

Saying "thank you" for his cake:) Sweet boy!

So excited about his bell from Nanny:)

"Yay, Tripp!"

Saturday, (his actual birthday) I decorated with balloons and streamers and we celebrated with Randy, MeMe and PawPaw Carey, Randy's brother Ryan, and Maw and Paw Robicheaux.  MeMe brought another cake and we just played with Tripp and opened presents.   He was in a good mood for most of the day and played his little heart out with all of his new music toys. 

Sleeping angel on the morning of his birthday:)

Huge thanks to Ponchatoula Bakery for donating this beautiful and HUGE cake for Tripp's birthday. 
 It was delicious! 

He wasn't thrilled about trying to blow out his candles:)


And here is a video from when my sister was here.  Please excuse our singing... it's almost unbearable.  Try and concentrate on the skills of my little drummer boy, even though my video somehow cut out before he played Happy Birthday:(  
But how cute is he with his little drumset?? 


Saturday, May 14, 2011

My Baby is TWO.

Dearest Tripp, 

Happy, Happy 2nd Birthday my sweet boy.  Where in the world shall I begin?  Let me start off my telling you just how exctied I was about you when you were in my belly.  You were already the best little boy (though Mommy didn't know you were a boy then).  You never once made Mommy feel sick, and you didn't even move around much while you were in my tummy.  But you did make me eat a whole whole lot.  While you were in there, I used to think about all the fun stuff we were going to do together... like going to the park, taking walks, going shopping... stuff like that.  I couldn't wait to show you off to the world.  

When the time came for you to come out and meet everyone, you took a little longer than expected (Mommy thinks it's because of your big head), but whatever the reason, you finally arrived on this day- May 14, 2009.  You were absolutely perfect.  No kidding- as beautiful as they come.  But very slowly we realized that the road ahead of you wouldn't be so perfect.  In these past 2 years, you have had to face obstacles and challenges that no human being should ever have to face in a lifetime.  Since the first day of your life, you have had to deal with pain.  And within the first few months, you starting struggling for each breath you would take.  Before you were 6 months old, you had a feeding tube, a tracheostomy, were covered in bandaging to protect your skin from blisters from the neck down, and had been in and out of the hospital so often that all the doctors and nurses knew your name.  

Each month, week, day... always brought on something new.  Either a new blister, a new infection, another corneal abrasion, a plug in your trach... I could go on and on.  But you, little man, took every new issue like a complete champ.  A lot of times you would have to put Mommy back in her place.  I would be so sad and down about something that you were going through, but you would always show me that things were going to be okay by either showing off a new trick you learned or just flashing that "melt my heart" smile of yours.  

You got your trach put in before you could even speak your first word.  I dream about the day that I get to hear you speak for the first time... whether it is when we are in Heaven together or whether it's here.  I wish you knew how many lives you have touched just by being you.  You have already spoken to so many people and taught them so much about life- without even saying a word.  

This year's birthday is definitely another milestone.  As will every other birthday from here on out, since the doctors said you wouldn't live past your first birthday.  But as your Mommy, I must say that times like these are bittersweet for me.  Of couse I am overjoyed that you have turned 2 years old... but I'm also the one who has watched you turn blue and lose conciousness struggling to breathe.  I'm the one who pops each blister as they form and grow, the one who places you in the bathtub and cleans your sores while you scream, the one who has to put pressure on a raw finger or toe to stop it from bleeding, or the one who lifts your head off the pillow in the morning when it was stuck and starts bleeding.  I'm the one who sees every ounce of pain and witnesses every minute of suffering on a daily basis.  So while it's easy for me to say that this is a great and happy day for me- it's also a very sad day.  I wish so desperately that you could have a normal little boy life.  I wish you had your eyesight.  I wish you could speak.  I wish you could wear normal clothes without bandages.  I wish you would lay next to me and cuddle without me worrying about giving you a blister.  I wish you could wear shoes.  I wish you could go outside, ride your bike, go to the park and slide down the slide.  I wish I could throw you in the car and go get a snowball together.  I know all of these things don't matter to you, because you don't know any better... but I can't help think about these things every day when I look at you.  

You know what gets me through?  You.  
You are my HERO.  
You cry when I pop a blister, and then in the next second... without missing a beat, you are smiling and "clicking your tongue" to the music.  You are more than satisfied in your own little world.  You take what you've been given- and you deal with it.  And some people may say, "Well, he's only two... he doesn't have a choice."  But I don't believe that for one second.  I do believe that you have a choice to fight or give up.  And I know that you are a fighter.  That's the reason that you turned two years old today.  You make me want to be a better person.  You make me a stronger person.  You make me a kinder person, a more thoughtful and selfless person.  The way I live my life changed when you came into this world two years ago today.  I owe my life to you.  And without a thought, I would give my life to take all of your pain away.  

I want to tell you some of the things that you are doing right now.  You are nothing short of musical genius (I'm a little partial... but I think so:).  You LOVE music or anything that sings or makes noise.  You have every drum and musical instrument ever made and you can listen to a song once- and beat to the tune of it perfectly on your drum.  Though plenty of times, you get aggravated with us and you "fuss" us when we try and get you to show off.  If it's not YOUR idea, you don't want to do it.  You can't stand the word "love."  You don't "love" your Mommy, Grammy, MeMe, your shaker, your drum, or ANYthing.  You shake your head "no" the second you hear the word.  But you will say that you "like" your Mommy or your toys, etc.  Just don't mention "love." You have three rectangular storage ottomans that are shaped in an "L" that you walk back and forth on.  There are two baskets full of toys at each end.  You're a pro at finding what you want in those baskets, even without being able to see.  You know exactly what each toy is the second you touch it.  And if you find something you don't want, you just throw it.  Some of your favorite songs right now are: Elmo's ducks (and you make the sign for "duck" each time the ducks quack... it's the cutest thing ever), Rubber Ducky, Shoo-Fly, Don't Bother Me, She'll be Coming 'Round the Mountain, Rise and Shine... and plenty more.  You either want us to be singing to you or your cd's on singing almost all the time.  Right now when you are rocking or laying in your bed, you either want to hold your duckie or a "shaker."  And when you're really tired, you usually drop one toy and hold your blankie.  

There is absolutely NO diciplinary action whatsoever in this house.  You do whatever you want, whenever you want, however you want and with whoever you want.  And that is the God-honest truth.  I love every minute of it.  And you deserve every minute of being as spoiled rotten as you are.  
There are big big plans in store for you, my boy.  And each day that you are here, I believe in my heart that you touch another life.  You have so many people across the world who are praying for you- people who have never even met you but write me and tell me that you inspire them.  You wear some big shoes, buddy... shoes that many of us could never dream of walking in.  And you sure wear them well.  

You are what I live for.  What I started living for 2 years and 9 months ago... and what I will live for the rest of my life.  What in the world was my life like without you in it?  I'm so blessed because when I think my day was rough or that I have it bad... I have you right in front of me every day to remind me that I need to count my blessings and that I need to step up my game.  

I love you more today than I did yesterday- 
and I will love you more tomorrow than I do today.  

Happy Birthday my little miracle. 
Love, Mommy 


Friday, May 13, 2011

Mother's Day weekend & Nanny time.

First of all, I want to start by saying that I think a lot of people take Mother's Day for granted.  It's kind of just "assumed" when you're growing up that you will be able to have kids and be a Mom one day (if that is in your plans).  So as hurt as I am that my child is not healthy, I feel really blessed and grateful to be a Mom and to have Tripp with me everyday of my life.  And at the same time I'm feeling very sad for the Mommies who have lost children or who can't have children of their own at all.  I just think it's important that we all stop our busy lives sometimes and think about what others might be going through on a day like Mother's Day.  A day that we just mark on our calenders and plan parties for without missing a beat.  So to all of you Mommies who have lost a child- or children- or who have never had the experience of having a child on your own or of your own- Please know you are thought about.  Because you should not be forgotten on this day.  

I want to thank my amazing Mother.  You have been my ROCK my whole life, but especially in these past 2 years.  You have so selflessly put your life aside to take us in under your roof and devote yourself 24/7 to helping me and helping Tripp.  Your life has changed just as much as mine has- from not leaving the house to not being able to even go to the bathroom without someone needing you.  I love you, Mom.  And there are no words that I could type down here that would ever come close to telling you how much you mean to me and how very grateful I am to have you as my Mom.  You are an angel. 
Mrs. Pam, you spend countless hours in that rocking chair so that I can have time to get things done for Tripp or even just have a little time for myself.  You have been by our side from the minute Tripp was born, helping with whatever it was that made our lives a little easier.  And with everything we've been through, you have never once lost focus on who and what is important- and that is Tripp.  Thank you for loving me and loving my little man more than I could have ever imagined.  I love and appreciate you more than you know.  

Tripp's Nanny (my big sister) was in town this week!  She came in on Saturday (from North Dakota) and left this morning.  Why is it that it takes so long for her visit to get here and then it goes by SO very fast.  We have had such a great time visiting and Tripp was SO happy to see his Nanny.  He was grinning ear to ear and wiggling those little toes like crazy when he heard her voice.  Thank God for skype so that he knows his Nanny and her voice.  You could definitely tell he did.   Britt and I got to go grab lunch together and get pedicures while she was here.  I absolutely adore my sister and I'm already counting down the days until she gets to come back.  We have so much fun together- even if it's just doing nothing.  We've always been so close and it's always a really sad goodbye.  
Britt's husband, Mike couldn't make it this time because of work (he's in the Air Force) but he sent Tripp a birthday card signed by his squadron and a patch- so he is now officially a part of the 54th Helicopter Squadron:) Thank you all!

I had the best Mother's Day that I could ever ask for.  My family is the best.  And I got to spend the whole day with the people I love and most importantly, my little man.  Tripp was in the best mood.  He played his drums almost all day and actually went outside to see some of the family.  My dad's side of the family came on Sunday.  All of my beautiful little cousins were here that I haven't got to see in a while.  None of the kids were allowed inside, so they looked at Tripp through the window.  It was so sweet because we cracked the window a little and Tripp could hear them singing to him.  He would play his drums to the tune of their song- and they were loving being able to see him play.   


Tripp has been loving him some "Maw Maw" lately.  My grandma lives in a smaller house that was added on to my parents, so every now and then Tripp will want to walk over and sit on her lap.  He loves for her to sing to him with her French accent.  And she is just eating him up and loving every minute.

The school bus OUTSIDE? :)
He's such a little trooper. 

Papa, Grammy, Brittany (Nanny), Me, the unhappy Trippster, Ashley (my brother's girlfriend), and my little brother Jason.

Tripp and MeMe.  How cute are those smiles??

I know a lot of you have been e-mailing me for our address.  I FINALLY opened a P.O. Box. 
Courtney and Tripp Roth
P.O. Box 216
Ponchatoula, LA  70454

We celebrated Tripp's birthday with my sister on Tuesday night, because she wasn't going to be able to stay until his actual birthday on Saturday.  We just had some cake, let him open his presents from his Nanny, and took some pictures.  I will wait to post the pictures for his "birthday post" since we will be celebrating again on his actual birthday with Randy and his family.  
I went with the "duck" theme since that seems to be Tripp's "toy of choice" for these past few weeks.  So my aunt made to cutest duckie cake and I bought lots of ducks and balloons that I will decorate his little "area" with.  
I cannot believe my little man is turning TWO.   How blessed am I that I got to spend two whole years with one of God's miracles.  And you can say what you want, but I know that it's a miracle that my baby is alive- I've seen every day, all the days of his life... and I know what he's been through.  This child is alive for a reason.  He's touching lives and changing lives.  And even if it was only MY life that he's changed, I know that because of one life (HIS life) that I will never be the same for as long as I live.  With my next child... whenever that may be... I will never take one cry, one laugh, one step, one smile, or ONE thing at all for granted.  Tripp is my world.  I can't remember what my life was without him in it. And I never want to have to remember.