Monday, February 28, 2011

Update and Help for Carson and Anton.

Ok, I know I've been a total slacker, but here's my excuse... I typed a whole blog about 3 days ago, it was long... with an update, pictures, info on other EB kids- and when I went to publish it, the computer said error and it wasn't saved and I lost everything.  It was terrible.  I was ticked.  SO, I will try now to start over...

Tripp was on 2 oral antibiotics for about 14 days earlier in the month... and that was the best 14 days of my life, no question.  He played and played in his little comfort zone.  Just walking side to side like a little crab.  Snapping (putting his two fingers together and clicking with his tongue) and then bossing anyone who's in the room to snap, too.  Shaking his little booty, playing his drum, learning more sign language.  He was also eating more by mouth (pudding, soup, chocolate).  Well, about 3 days after he finished the antibiotics (happens EVERY time)... he started going back downhill.  Not wanting to sit up much, his mouth was hurting, and wanting us out of his face (well except to rock him). 

But when he was feeling good... it was so good.  And such therapy for me.  It seems like when he's feeling good, it makes all the other little things (that I shouldn't even worry about) seem like they don't matter.  Then when he feels bad again, it's like everything is magnified.  But I can't keep him on antibiotics all the time, because then when he really needs them, he will be resistant and they won't work.  But I have to say, even lately when he's been feeling yucky, he still tries to stand up and play like a little trooper.  His eyes are taking a toll on him, I think.  They are looking so much worse as far as the tissue growing over the eyeball.  I'm really not sure how much he can see.  You can definitely tell that each day gets a little worse.  He's reaching for things that aren't there, and bringing things really close to be able to see them.  And his depth-perception is off for sure.  But he sure finds a way to get the toy he wants and know what to do with it. 

This child has like a sixth sense for music and sound.  I guess either because he can't speak and all he can do is listen to us talk and sing and play music... or the fact that I forget that he's almost 2 years old and he's smarter than I think:)  But he can tap, clap, "snap," or bang his drum to any tune.  And it's always right on target.  Even if it's a song that i just started singing, he picks it right up.  And then to watch him how he "bosses" us to snap when any type of music is playing... makes me think maybe I have a little musician or band director on my hands... haha.  No but really, even if there's music playing or not, if he wants to "snap," eveyone in the room has to snap, too.  And he will turn and look at each person, hold his arm out, and "snap" until you start snapping.  And don't think that you can just stop unless he gives you permission!  He's a bossy one.  I don't know where he gets that from:)

So, while he was feeling good, I was a total slacker on pictures and video, too.  But in my defense, I just ENJOYED him.  Every single minute of him- without the camera stuck in his face!  Though I do wish now that I had taken more video in case I ever forget what I little cutie he was in those 2 weeks!  I took a few good pictures of his heart-stealing smile on one of those good days!! :)

He has been playing some... just not as much as he was.  I'm pretty sure he has a little cold.  There's been a lot of suctioning and he's had a runny nose.  So maybe he just has to get past this little cold and then we can go back to playing more:)  Thank you all for the prayers and support for my little man.

So there's something that's been weighing so heavy on my heart lately.  And if I'm going to be honest, I really am not crazy about doing this kind of stuff on my blog... but I feel like it's important to ask you guys for a favor.  Not for me, but for 2 kids who are battling EB alone, without a family.  These two kids, Carson and Anton, have been on my mind a lot lately.  I try and imagine Tripp living this life alone- with no family and no one to give him that close, undivided attention that he gets here from us.  It literally makes me kind of sick to my stomach to think about Carson and Anton (and any other EB babies out there) living this horrible life of EB with no one to call family.  There is a family in CA, the Cannells, who have committed to Carson.  The only thing keeping Carson from being able to come to the states and be with his "new" family who wants to take care of him is "money."  They are about $20,000 short.  I know that seems like a lot, but I know that there are a lot of people who read this blog and who want to do something to help.  Well I'm asking you to help this family bring Carson home.  There are two sites available to donate for Carson.  I will list them below.  And Patrice has created a blogsite for little cutie Anton.  I think there is also a family who is thinking about taking Anton (if you haven't read his story, please visit his site below and do so... it's so heartbreaking).  And I believe the only thing stopping this family is also the financial issues.  So please... even if it's $5.00- help these little boys be united with a loving family who is willing to care for them and give them the love they need to survive this horrible disease.  I know it's hard for anyone who does not have to see this disease and what it does to these children on a daily basis... but for me- it breaks my heart knowing that they are sitting in a hospital bed or an orphanage- only with caretakers who come daily to take care of them, and then leave and go home to their own children and family.  These kids deserve a great home and so much love and I hate that money is the only thing holding them back.  So like I said, I don't like doing this, but if you can, please pitch in and help Carson and Anton.  Aren't they so cute??






Wednesday, February 16, 2011

Video and Link to WWLTV newscast.

  Hey guys!
First of all I want to say THANK YOU (which seems kind of lame, considering) to everyone who helped spread the word about Tripp's news story. There was such a huge response and we are so incredibly blessed that it's almost hard to believe. I was very pleased with it (except for my singing, of course:) and I'm so thankful for the people who took it upon themselves to make this possible (Dianne and Abby:). 
Tripp is one lucky little boy to have so many people who love and care about him. 
And I know that he understands me when I tell him how many people out there are praying for him.
Thank you ALL so much for the prayers, the kind words, the encouragement, and the awareness that is being spread.
And as time goes on, I know that we will only need more prayers and more support.
That's why I am so grateful to have such an amazing support system- that only gets stronger by the day.

SO, if you are not local, or you missed the newscast... you can watch the story HERE at ... or in the video I posted below.  They are both the same, so which ever one works best. 
 There is also the article below the video on the website link above.  


A special thanks to Mr. Bill Capo and Mr. Brian (the photographer/videographer) from WWL Channel 4. You both made this experience unforgettable for me.  Thank you for treating us so nice.
This is something that I will treasure forever.

My little "Angel Baby" had a pretty rough day today.  I guess the "good days" are starting to wear off.  But this is what always happens- a few good days here and there, then a few bad months.  His eyes are giving him a lot of trouble- more with each day.  And each day he is closer and closer to losing his vision.  So if you are someone who likes to pray specifically... his eyes need your prayers the most!  I know it's unrealistic of me to think that he can have "good days" all the time, but I've sure enjoyed these past few days that he has been playing. I wish they could last forever! 
What a special little boy Tripp is...  I am blessed. 


Friday, February 11, 2011

WWL Channel 4 story

Great news.  The local news station here- WWL Channel 4, will be airing a story on Tripp.  It will be appropriately titled "Angel Baby."  It will not be a documentary type story on EB (that's not what this station does), it will simply be a story on the joys and sorrows of Tripp's life and what he endures each day.  Tripp's wonderful pediatrician made it to the house that day to do an interview as well.  Randy was working, and Randy's mom was out of town.  So it was my mom, Dr. Defusco, and I. 

The story will air on Tuesday, February 15th at 10pm.  There will also be advertisements throughout the weekend- and they are even working on getting an advertisement during the Grammy Awards... which I thought was pretty cool:)  So keep your eye out for my cute little man.  And a fair warning: During my interview, I thought I was going to be answering questions about Tripp's disease, however I was caught off guard when Mr. Bill started asking me things like, "What do you pray for at night?" and "How strong is your little boy?"  So... there may or may not be some tears flowing.  I just couldn't help it. 
Also, for those of you who are not in this area... the story will also be on their website:
I'm not sure when or how long it will be there though, so when I know more I will let you know.

Since I have started Tripp on 2 oral antibiotics, nebulized breathing treatments, and oxygen... he's been feeling A LOT better.  Though like I always say- blogging about it could change things... But he's been having some pretty good days.  Playing and being the little ham that he is.  He had an awesome day yesterday visiting with his Daddy, and then had a really good bath.  He even got in his walker yesterday after bath for about 30 minutes... which hasn't happened in about 3 months.  I was in heaven.  I am stealing an awesome quote from a good friend-
 "Imagine waking up tomorrow with only the things you have thanked God for today." (thanks Aly:) 
I love this.  And I often get so caught up in the moment when Tripp has a good day, that I forget to thank God for it.  This definitely makes me realize that I too often pray to God for good days, and then put Him on the back burner when things turn "good" for us.  Something I need to work on. 

  But I will end with these precious pictures from the past 3 days.  His eyes can be a little deceiving... they are open wide, but overgrown with tissue:(  Though he still finds a way to play and get exactly what he wants!

SMILE for bath! Look close- because it might not ever happen again:)

"Snapping with Maw Maw Pat"


Friday, February 4, 2011

Love, Mommy

Dearest Tripp, 
How can I possibly find the words to tell you how much I love you?  You are now 20 months old.  I often look at your pictures and it literally takes my breath away how beautiful you are.  And looking back through your pictures, I remember thinking how sad I was for you and how bad I thought you had it then.  But comparing your struggles then to your struggles now, I know that this is a battle that will only get harder for us.  Harder for you, because this awful disease is taking over your body… keeping you from being a normal little boy, causing you so much pain, and holding you back from a life that you deserve.  And harder for me, because this awful disease is consuming my precious little boy.  Each day when I look into your eyes, I feel so guilty.  Not because I think that it’s my fault that you are suffering, but I feel guilty because I am healthy.  I have perfect eyesight, I have healthy skin, I have my fingernails and toenails, and I can breathe easily without having to struggle for every breath I take.  These are so many things that so many of us take for granted every single day.
I look at you all the time.  You don’t see me staring because you are usually sleeping, or have your eyes closed. But when I look at you, it’s such a crazy, overwhelming feeling.  I want so bad to be able to throw you up in the air, or take you out and show you off to the world, and mostly to be able to see you running around destroying the house like a little tornado.  But instead, I see the little boy that I brought into this world… laying with his eyes closed and suffering with each bath, diaper change, and suction.  Why should a baby have to suffer the way that you do?  But you know what else I see when I look at you?  I see a hero.  My hero.  A little boy who gets up each morning in excruciating pain, who is frustrated and irritable- but never gives up.  He fights with each bandage change, each suction, and each breath.  And when you feel good and finally get the chance to smile and show your personality, you light up my life beyond belief.  Even at your very young age, you are setting a true example of what life is really about.  I know that you have already touched so many lives and I can only hope that you will continue to touch lives for a very long time. 

There are very few people who actually see the struggles that you face day to day.  Some can pretend to understand, but even as your Mommy... I know that even I cannot fully understand the pain and suffering that you have to endure.  No one ever will.  All we can do is learn from you... and be better people because of you.  Because there are not many living beings who could be in your position and still fighting for their life.  Your little body is so frail.  You are supposed to be running and jumping around, but instead your naked little body looks like you're still about 8 months old.  But you are so innocent.  You have no idea that you are the most special child I know.  Your little smile... it radiates the room and everyone in it.  

I am SO proud to call myself your Mommy.  I am forever a better person because of you. The struggles that we face together each day are so bittersweet.  But I wouldn’t trade a single second of all the joys and the sorrows that we have shared- because we've shared them side by side.
I love you baby boy. 
 Just thought you should know that. 



Thursday, February 3, 2011

Hanging in there...

Maybe by a thread... but still hanging.  My little trooper is still fighting so hard.  He's been having good days and bad days, very inconsistently.  And a good day is defined by standing up in his little 5x5 area and playing with his toys for about 15 minutes at a time. The biggest issues right now would have to be his eyes, his mouth, and his trach/breathing.  And bath... I won't even go there. Terrible.

His eyes are just beyond horrible... there are no words.  And they are only getting worse by the day... literally.  He's becoming a little more frustrated as it gets harder for him to see each day.  You can tell by the way he reaches for things, and brings his toys all the way to the corner of his left eye to be able to see it.  Like I said before, the eye doctor said that his right eye already has half the vision of his left... and both eyes (the left one worse) have granulation tissue growing over his eyeball.  The right eye is more than half-way covered.  I've put a call in the the eye doctor... not really even knowing what I'm going to ask, but just making sure with him one more time that we have no other options.  For this poor child to lose his vision along with everything else going on, is just borderline cruel.  

His mouth just kills me.  He's had teeth since he was about 3 months old.  Imgaine how it would feel if you had never brushed your teeth for almost 2 years.  I really just can't imagine how his poor mouth feels.  Then on top of just "feeling yucky," he's got sores covering his lips and tongue.  Not to mention, that he must have cavities and rotting teeth in there that I'm sure is painful.  I fully understand the dentisit's concerns about putting him out and trying to do something with his mouth.  It's somewhat the same deal as the eyes... if you irritate any of the mucous membrane tissue, it becomes raw and can fuse to any other surface.  There have been cases in other EB babies, where after dental work, their mouth has been fused together completely, with tissue sloughed off in places.  I'm not thinking I want to go there.  I just wish there was something we could do.  I've been using Biotene spray- but you can imagine how he loves that.

And his breathing- where do I begin?  With this weather the way it's been... he has been SO dry.  He can hardly stand up to play for 5 minutes without having to lay back down with his humidifier on.  And no- he will not wear it standing up.  Nothing can be "in his way" when he's standing and trying to play, including us people who are always in his face.  So I've been doing breathing treatments, high steroids, changing his trach when need be, and keeping him on his humidifier most of the day... and he's still having the most trouble he's had in a while.  I'm almost positive that it's the sore acting up below the trach.  And I don't like that at all.  But I'm doing everything I am supposed to be doing.

He hasn't left his little "comfort zone" in months.  When he stands up, we ask him if he wants to go outside, ride his car, anything... and the answer is always "no."  For a child who cannot speak, he SURE can get his point across.  But there are also times when I tear up because he will stand up signing "more" and we try everything to figure out what he wants and we can't.  He gets so frustrated and gives that pouty lip and wants to get back on the rocker.  It's so sad.  But MOST of the time, he can communicate with us very well and let us know exactly what he wants without a word.  He can say "NO" very well (just like any other 20 month old can), and now his "yes" is tilting his head all the way back with a big huge smile.  It instantly melts your heart.   

On another note, I'm sure all of you are very aware that a child with special needs puts a strain on a marriage.  Well, in our situation... that has surely been the case.  Randy and I have been seperated since July and Tripp and I have been living with my parents (who have been A-M-A-Z-I-N-G).  I have tried to be very respectful in keeping our personal issues off the blog, but I also know that it will be coming out sooner or later.  I don't want to go into detail and I hope everyone will respect that.  Both Randy and I love our son.  And everything being done is in Tripp's best interest.  I do, however, want to say thank you to Tripp's MeMe, who comes to help me at least 4 times a week- rain or shine, regardless of my good mood or my bad mood (which is hit or miss these days).
 And thank all of you for your support- this has been a difficult time for everyone involved. 

And with that... I will leave you with my precious angel...
whose smile gets me through the toughest of days.