Tuesday, February 23, 2010

Fundraiser, New toy, Jonah's Auction, Britt's wedding and BED...

Hola!  How is everyone??  Sorry I must be watching too many Spanish cartoons lately...  We are still doing  well here.  I've gotten a humidifier for just about every room in the house and try to keep them running all day (but that's pretty pricey using distilled water!!).  But is seems that it might be helping a little.  His secretions are just SO thick and I am still having trouble with the size of the suction catheters.  The 6F is too small and doesn't really cut it and the 8F is too big.  Why there is not a 7F I will never know.. ha
Tonight was Tripp's fundraiser put on by the PhiMu sorority of Nicholls State University.   Anyone who went to eat at the Chili's in Houma, Laplace or Thibodaux and presented Tripp's flyer donated 10% of their total bill to his fund.  Isn't that just amazing?  I think there was a pretty good turn-out.  Thank you so much to everyone who went to eat for Tripp tonight.  You're meal will help pay for his doctor visits and supplies.  Thank you to everyone who was associated with putting together this fundraiser and to everyone who helped spread the word.  There were people that I do not even know who were e-mailing me for flyers and posting the event on facebook and even people sending checks for the fund!  Your support is very MUCH appreciated.  I just hope one day Tripp can see how many people love him and are praying for him!  It's so touching.

So today we woke up and were going on with our regular routine and the UPS man knocks on the door. Well, it wouldn't be a normal day over here if the UPS man didn't stop at our house (I think he gets aggravated at all the boxes that come here and may or may not have hinted that before).  We are always getting him some type of supplies for him... wound care supplies, suction catheters, g-tube feeding bags, etc... So I was totally expecting suction catheters because it was about that time... well I opened the box and it was a really cool TOY!!  YAY!  It's not everyday that a toy comes in the mail!  And what's better than expecting suction catheters and getting a toy instead.  It was from Diane Rabalais ( the nurse from North Oaks who helped deliver Tripp).  She had a really nice card that said she read the blog and heard us singing "Head, shoulders, knees and toes" and her daughter had a really neat toy that sang it.  SO she bought it for Tripp.  Once again, people just amaze me.  Tripp LOVES it.  It's the perfect height for him to sit on the ground and just bang the heck out of it.  He sat on the floor with that toy today longer than he's EVER sat.  BLESS YOU DIANE!  He was actually preoccupied for a few minutes!!  I had to lysol the toy after he finished because it had blood all over it from his little fingers from banging on it so hard! haha.  Here he is with it... Thanks Diane :)

Tripp's skin is looking about the same...  his face is looking better.  Thank God.  He is still rubbing his eyes a whole lot and still has blisters and some raw skin hanging from the corner of both eyes.  And he has those scabs on his face that just don't want to heal.  I don't know if it's the depth of the wound that makes some heal so fast and some NEVER heal.  I have no clue.  Or maybe it's just that some will never heal.  The ones on his legs have looked exactly the same for months.  They're pretty deep though... and he kicks his little legs like there's no tomorrow.  But I pad his legs with about 4-5 layers of stuff to keep new ones from popping up.  And it works, there hasn't been a lot of new ones... one here and there.  But ugh... his fingers.  I'm just at a loss.  I am absolutely NOT wrapping each individual finger... not because it's hard on me, but because he LIVES to hold and play and use his fingers... that's pretty much all he can do.  And I've wrapped the little sore that's been on his foot for months and it just won't heal either, so I'm thinking the fingers will maybe just come with time... A LOT of time.

Jonah's Auction is up and running!!  All the proceeds from the auction are being donated directly to Debra to help find a cure for EB!  Please, please go check it out.  They have some really great stuff and it's for a great cause!! And it's to celebrate Baby Big Boy Jonah's 1ST BIRTHDAY!!  HOW.  Freaking.  EXCITING?  Really, go check it out... and BID!! It will tell you how to bid on the website!

OH I so totally forgot to tell you that my sister (Tripp's Nanny) is getting MARRIED!! IN MAY!!
Very soon, I know... but her fiance' lives in Minot, North Dakota, so a long engagement isn't really fun.  Anyway, she will be 28 hours away :( I know.  I will try not to focus on her leaving yet and only one the exciting wedding day (May 22!)  I really don't think it's hit me, well I KNOW it hasn't hit me yet that she will be leaving and be so far away.  Ok, so I'm really NOT going to think about it.  Anyway, I have 3 months to shed some pounds... and tone up a bit.  So I need a little motivation.  Just not sure where I will get it.  I've been eating better this past week mainly because there are no groceries in our house because we haven't been grocery shopping in ages except for things we need here and there.  My mom ordered us an elliptical so we are going to start working out as soon as it's in.  I mainly need to work out to get a little energy back and so my body won't feel so stiff all the time.  Ok I'm starting to bore myself.. sorry.

It's WAY past my bedtime and Tripp finally just fell asleep watching Mickey Mouse.  He LOVES his bed.  Thank God.  What 9 month old wouldn't love their bed when they're propped up on a boppy and several pillows with soft blankets surrounding him, watching Mickey Mouse on his portable DVD player and chewing on his favorite toy (a burp rag).  Judge me if you want.  But the child deserves to be rotten.  And trust me, the DVD player only occupies him for a short time...

One more thing... I want to share some scriptures with you that Jen Burns shared with me that I thought are SO fitting.  And there is nothing I love more than reading scriptures that suite our situation (It just makes it a little easier, ya know?) Thanks, Jen.  You may have saw them on caringbridge, but I wanted to post them here, too.

Revelation 2:12
He who has an ear, let him hear what the Spirit says to the churches. 
He who overcomes will not be hurt at all by the second death.

Psalm 37:18
The days of the 
blameless are known to the Lord, and their inheritance will endure forever.

2 Timothy 2:12
If we endure hardship, we will also 
reign with Him.  (how cool is that!)

This is him waking up this morning... a hot mess as always!!
But he's always smiling!!


  1. Hi I've always wanted to comment on your blog before but never have, I know you do not know me but I feel like I know your family, baby Tripp is such an inspiration to me and he is the cutest thing I've ever seen! I have went through some struggles with my son being born at 24wks and being in the hospital for 4 months and having 3 surgeries, but I think you are such a strong amazing mother, and I had a random question, how long do the doctors think Tripp will need his trach for? I'm glad I can always be learning and help spread awareness for EB. Thank you

    Andrea McCollum www.aamccollum.com

  2. He is such a cutie!! You are such a wonderful, strong mama!!

  3. It is an honor to pray for you! Truly, an honor. I didn't know I was a nurse! :) lol Hope your day is blessed!

  4. Good Morning Courtney!

    I've been following your blog for quite some time and I must say that I have become very attached to your story and more than anything to you precious little boy Tripp. First thing I do is check your blog EVERY morning and I just love seeing pictures of him, that lets me know that he's doing good, I know....in a lot of pain sometimes, but he's a fighter, he's a strong little boy and I just love him. If I wanted to send you a gift to help with your supplies and things you need on a daily basis, where should I send? I would love to help you. Let me know how I can help. Love you guys!
    Hugs and kisses to cute little Tripp!

  5. Awww, bless him, he wakes up smiling...can you tell me where you purchaesd your walker? I am in Canada and they are illegal here, but I am heading to the US next months and hoping to pick one up at a Walmart or Target...Keep Smiling Tripp...your little grins make my day!

  6. Courtney, I'm so sorry I haven't made a comment in a while but I haven't forgotten about you ,Tripp or Randy. I still pray for ya'll each day. Tripp is getting so very big as well as more handsome each day if thats possible. KEEP UP THE GREAT JOB YOUR DOING & please give Tripp a hug & kiss from me. I love ya'll. Take care & God Bless. I like your new toy you got in the mail Tripp.

  7. What's so amazing about you is that you recognized how short his precious life was, so you let him enjoy his days as much as possible. He deserved to be rotten and have fun and savor every second of every day. You did a wonderful job, mama.