Thursday, March 31, 2011

Our life in motion.

So I know that you guys have been wanting to see some videos.  Here they are.  But don't get too excited- this little monkey usually shuts down when he sees me pull out the camera.  He definitely knows when I'm filming and doesn't want to perform.  But these are just a few short little clips of what our daily life consists of (well, when he's standing up, at least:) 

This is something he actually just did today.  He was making a "pig" noise with his trach and "wrinkling" his nose with his finger :)


This is hilarious.  It's the sign language he knows that we put together in a sentence.  
"I'm gonna read a book about poo-pooing in the potty.  And I need help"
haha... don't judge- it's cute and you know it.


Finally caught a VERY short clip of him "holding his breath" :) He's so funny.


My Uncle Ray makes this child laugh and smile like no other.  
As soon as he hears his voice at the door, he pops up and wants to play.  



Also, Tripp got the pleasure of meeing Meghan Linsey from the hottest new duo Steel Magnolia (who are nominated for two ACM (Academy of Country Music) awards this Sunday:)  Meghan is from Ponchatoula also.  We went to high school together and then she moved to Nashville right after high school to pursue her music career.  And boy did she succeed!  She and her boyfriend, Josh won on the CMT show "Can you Duet?"  Well, anyway, I'm sure you all know the rest... since then they've had quite a few hit singles :) They are awesome.  I didn't get to meet Josh... but I was so touched that Meghan took time out of her crazy schedule to stop by and visit.  Especially since we haven't seen or spoken to each other since high school.  She came with my awesome friend Brittany and her adorable little man Carter- check out those beautiful eyes.  This picture does them no justice!!
 But Tripp wasn't having it!! :)


Wednesday, March 23, 2011

Here it is... an update:)

I know, I know, I know!!  I'm a total slacker!! But really... sometimes even blogging once a week I feel like a broken record because it's always the same things (though I'm not complaining, because things could get worse).  I just don't want to bore you guys:)  My sweet angel is still fighting hard each day.  And as much as I can say that he's playing and being a little ham- he's also suffering, in pain, and struggling to breathe.  He really is the true definition of a fighter.  His breathing has been all over the place lately.  One day he is really junky and the next he's as dry as can be and struggling just to get air in.  He's still getting oxygen at night and I think that is helping him sleep a little better.  But during the day, he will stand up and play for a few minutes and then know when it's time to lay back in the rocker and get his "air."  Yesterday he hit his finger on a toy and I didn't even know until I saw a huge blood puddle on his table.  It looked like a murder scene.  And he didn't cry or even miss a beat.  That's how amazing he is. 

Starting the bath process is almost like a "walk down the plank."  He can see everything set up and he just "senses" when we are about to pick him up and put him on the table.  I think he feeds off of my anxiety too because it's so indescribable to watch.  Once he's out of the tub, he is okay.  Unless of course if he is tired and frustrated.  But most of the time, he is a little angel in the rocker to put his bandages back on.  Putting the bandages back on is actually one of the funnest times that we have with him.  Because he's so relieved to be out of the water, clean, and not wrapped up.  He does some of the cutest things at that time. 

His little bottom is so raw again.  It looked better for a while, and now it's back to being two big raw cheeks.  Every one of his sores at some point starts to look better and then takes a turn for the worse.  The sore around his feeding tube is the only one that is consistantly looking better with each dressing change.  But he is still starting to get more and more new blisters from the pressure of us lifting him and also from the weather getting hotter and hotter.  The sores around his neck are at their worst right now.  They are big, draining and get stuck to all of his bandages.  I've tried so many different ways to keep it from sticking, but he either pulls stuff out or the dressings move around.  The words and pictures on this blog say absolutely nothing about what goes on in this house and what my little boy goes through on a daily basis.  There is no way that words could express what I'm watching him go through each day.  Yes, he plays.  But he also copes with no eyesight and with extreme pain.  I just think about every time we pick him up and put pressure all over his sores.  Or hold him on our hip putting pressure on his bottom.  That has to hurt SO bad.  But he's used to it.  It's so sad that he's USED to being in that much pain. 

But when he stands up to play lately, breathing trouble or not, he's like THE master clown. It's hilarious and fills my heart with SO MUCH JOY to see him play. The way that he is coping with losing his vision is just incredible. His other senses are just taking control and he's functioning so well with his toys. However, he doesn't want to leave his little "comfort" zone because I think it makes him nervous that he isn't aware of his surroundings. He won't ride his car anymore or doesn't want to get in his walker. Probably for that reason. When he's in his little spot... he knows where he can walk, where his toys are, where we are, etc. So he's "comfortable." And that's all that matters. He doesn't really know what he's missing out on... only we do. He's happy with where he is and what he has now. He can say tons of words in sign language and we try to teach him new words all the time. But his head is harder than a brick floor, so it's only on his time. He plays us like a book and has us wrapped around his tiny raw fingers. It's hilarious actually sit with him and watch how he KNOWS how to play us... by being a little drama king and throwing a fit, we give in, then he immediately smiles the cutest smile in the world.

OH- I forgot to tell you the cutest thing he does... Grammy taught him how to "hold his breath"- don't get nervous... he's very smart. So when you say, "Don't you hold your breath!" (because everything has to be said that way for him to do anything cute- don't judge, I am very aware that I am creating a monster and I don't care), he takes his cute little pointer finger, and blindly tries to find the opening to his trach, then stops it up with his finger for probably less than a second (long enough to know he's doing something different) and then cracks up laughing at himself. It's so darn precious. And lately, he's not just smiling at us when he's happy... he's been giving real belly laughs, where you can hear noise from his trach.

 I'm open to your questions again...  or somethings in particular you would like me to blog about.  And thank you to everyone who send e-mails and messages checking in on us.  Sorry it took me so long.  
Hope everyone has a great week :)
And I hope this little cutie below makes you smile!


Friday, March 11, 2011

Tripp the Trooper.

Hi there.  My little man has been doing okay.  It seems like this is what's going to be his "norm."  Not feeling super great, but being able to stand up and play when he is feeling okay, after his morphine.  Of course he is still dealing with the same mouth and eye issues, and also with a few more blisters on his torso area (I'm dreading the hot summer because they'll be popping up like crazy, inside or not).  But mom and I are actually getting the hang of things... We're kind of exhausted, but finally getting into somewhat of a "routine" since the transition.  Thank the good Lord for my mother... I honestly don't know what I would do without her.  She has been by my side every single day since Tripp has been born.  And now, living here... she's doing just as much as I'm doing.  I can't imagine what my stress level would be doing this 24-7 by myself.  I take that back- it would be humanly impossible to do this by myself.  Especially since we have to trade off to go to the bathroom!  And some people might say, "Well she's your mom, she has to do it"... but she doesn't HAVE to do it... especially with the patience and unconditional love that she does it with.  So THANKS mom.  I don't tell you that enough.   

So Tripp's "Angel Baby" broadcast was sent to Louisiana Public Broadcasting by WWL Ch 4.  And they loved it, so they want to air it themselves.  It will run TONIGHT statewide on WYES and WLAE.  I THINK it will run around 7 pm.  But you can check their website to find out what time it will run on which channel.  It will be broadcasted on the segmemt called- Louisiana: The State We're In. 
So just in case you missed it, or want to watch it again.  I was just letting you know (a little late:). 

I also want to send out a BIG HUGE thank you for the enormous response that we received from the broadcast.  WWL was more than pleased with the 2000 hits they got to their website from this blog.  It's so heart warming to know that there are so many people who care so much about our little man.  Thank you for the donations, the kind words of support, and most of all the prayers that you all have been sending for Tripp and I.  I think it is very true that prayers work in numbers, so it is so touching to know that there are so many prayers going up for Tripp across the country (and even outside the country). 

I want to apologize to anyone who has sent me a message or an email that I haven't responded to.  I was always SO good about writing you write back, and then I got so backed up that I'm overwhelmed.  But please know that I get every email and every message, and it means the world to me to have the support system that I do.  All of your kind words literally carry me through each day and each week.  The positive words that you all send is like my therapy :)

My phone has been acting crazy lately and everytime I try to catch something that Tripp does on video, it either erases it, or cuts it off half way through. So I've been trying to get some video but it's not working great.  But here are some more snapshots of my little hot mess. 
There is no possible way that I could love anyone or anything as much as I love this kid.

Playing OUTSIDE of his "comfort zone!"  Lasted about 5 minutes, but we will take it!

Skyping with my Nanny!! Thank you technology. 

He has "soup" mouth in this one, but I wanted to put a close up of my poor baby's eyes.  So you can have an idea of what they look like.  This was last week I think.  They get a little worse each day :(