Tuesday, October 18, 2011

Update, Reader's Digest, and EB Awareness

A lot has happened since the last time I posted, so I will do my best to catch you guys up.  
Since the night that I posted all of those videos, Tripp has literally had a good day, then a bad day, then a good day... etc.  I'm in the process (along with Dr. D and Trea, our super fabulous pharmacist) of trying to switch some of his medicines.  Within the past week, I've tried some new antihistamines to help with his itching.  O my GOODNESS, the itching has been horrible.  This poor child just never ever gets a break.  So, the antihistamines are brutal.  He was literally gasping for air about 30 minutes after I gave him the new medicine and it lasted almost all night long.  It's like it dried him up completely so that he couldn't breathe.  That was a horrible night.  So I stopped all of the antihistamines altogether.  He's on a yeast medicine and a fungal medicine in addition to trying every topical itch cream that there is.  The itching has just started to be an issue this past month, and from talking to other EB moms or adults with EB... it's something that is ongoing and nothing really helps.  Great. 

So as far as the skin... the wound cultures came back growing (I'll give you one guess)....PSEUDOMONAS.  And guess what?  There are no oral antibiotics left that treat it.  So this was my decision.  I said I would try Rocephin injections (the pseudomonas was sensitive to that) once and see if they could bring his white count down enough to try the G-CSF.  SO- as of this morning, he's gotten 2 injections of Rocephin IM (Intramuscular).  They are only once a day- Thank GOD (because that's horrible enough) and it's for 7 days.  I'm giving the injections myself... something that NO MOTHER should have to do, but I wouldn't want any one but myself doing it.  They are rough- thick and 2 mls of fluid going into rotating thighs each day.  I'm glad we are trying them, but this is not something that I'm going to do again.  SO PLEASE pray that these injections will drop his blood counts so that we can try this G-CSF at least ONCE, so that maybe it will heal something and decrease his constant infections.  That is my goal.  Will will hopefully be re-drawing his blood work on Thursday or Friday to re-check his counts. 
Oh, and I forgot to mention the diarrhea, bellyache, the bruising of the site, and the soreness that come along with these injections.  This child is a saint.  I can't stress that enough.




Ok, so now for the shout out to my super awesome followers.  There is a contest going on for Reader's Digest.  If you win, you get your story published!!  How awesome would that be for EB Awareness?  Right now, our story is in 2nd place- and all of my Facebook friends have been so awesome about spreading the word to vote for us!  Thank you so much to all who have voted.  You can vote EVERY DAY from EVERY electronic device (computer, smartphone, iPad, etc).  So please, if you think about it, take a minute to vote so we can spread the word about EB in Reader's Digest!  It would be a great prize with EB Awareness Week coming up!  
You can click HERE to vote!

Speaking of EB Awareness, I thought of an idea to help spread the word next week.  Since Halloween is coming up and everyone will be Trick-or-Treating, I created a flyer that can be handed out!  You can either hand it to the kids (or maybe parents) of the Trick-or-Treaters that come to your house OR you can take the flyers with you when you go Trick-or-Treating and pass them out to anyone you see!  This way, we can "Trick-or-Treat for Tripp" across the country:)  Here is the flyer if you're interested:


I hope it works to where you can save it and print it out from the blog.  If not, let me know and I'll find a new way to share it:)  
I hope everyone has a great week! 



Love,
Photobucket

28 comments:

  1. Love the flyer idea!!! Going to print it right now! Good luck for our little Tripp~ we all want nothing but the best for this little man!! Hugs for Tripp! <3

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  2. thinking of you and your precious little boy...

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  3. Praying for these counts to come down. What a very special son you have! My heart is just breaking for him.

    Hang in there Courtney, you are an amazing mom.
    <><

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  4. We're all rallying as hard as we can for Tripp to win the Reader's Digest contest! Now he is in the lead and we're doing everything we can to make sure it stays that way! God Bless you and Tripp, praying for you always! xoxo

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  5. I loved the flyer idea too! But, the image seems too small when I save it :( I'll try to print it, but could you attach the file onto the blog so we could download it, maybe? (I hope I am not asking for too much) :( ...

    Also, I am praying these injections will help little Tripp! Taking one day at a time and hoping for a brighter future!!

    Hugs to you two!! :)

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  6. Hi Courtney - praying that the Rocephin works quickly and well. We've had to give a couple of our kiddos that for recurring ear infections and those injections are NOT fun. I can't imagine what it's like for sweet Tripp!

    Voting daily on RD, too! Hopefully we can all get you into 1st place!

    Praying for you and of course for that sweet boy.

    Love from TX,
    Laura

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  7. Hi Courtney,
    My family is praying for him every day.

    You could try changing his diet to combat the yeast and fungus, so that he could stop taking those medications. My husband is trying a similar approach after dealing with a number of health problems, including eczema. He's been getting his information from sites like http://www.thecandidadiet.com/ and http://www.yeastconnection.com. It may be worth a try.

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  8. Praying the count goes down. Keep fighting little Tripp, so many people love you!!
    - praying for Tripp in Vancouver, BC Canada

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  9. Praying for you and your precious lil boy!!!

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  10. :-( I feel for you so much and although I can't relate to Tripps condition I can to many of the things he has to deal with... Keeping your family in our prayers.

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  11. Rocephin IS awful! Morgan had 3-4 rounds of it before she was 3 months old and she was so tiny I thought the needle would go straight through her.
    Props to you for doing it yourself, I'm hoping it works wonders!

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  12. Courtney, I found your blog through a friend of mine. She has been working hard to get votes for you.

    I just want to say that my heart and prayers go out to you and your son. You say over and over again that he is a saint for what he goes through. You are so right. Don't forget, though, that you are too. God obviously knew this when he gave this sweet baby boy to you.

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  13. Sending loads of prayers and votes your way!

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  14. Courtney, I cast my vote and although we don't get many kids in my neighborhood, I would love to hand out your flyers to anyone that does come by on Halloween. The file comes up rather small and the writing is a little hard to read; could you e-mail me something a little larger? My e-mail address is sabrinasteyling[at]yahoo[dot]com.

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  15. Courtney - I was so excited to see a blog update! I've been thinking about and praying for Tripp every day (all day??) :D Also working my Minnesotan bootay off rallying and wrangling votes - what an amazing amount of awareness could be raised, and is currently being raised! Incredible!

    Wishing there was more I could do...(*including* fly down for the events this weekend)! But, in the meantime, I'm sending a little something for Tripp with a new friend, though.
    <3<3<3
    Jen

    (ps - LOVING the picture of Tripp drum drumming away!!) And super cute flyer! <3

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  16. You are a saint and your little boy an angel. The things you deal with are beyond belief. Tripp deserves a miracle and I'll prayer for one everyday until it comes. Bless his little heart for all that he is going thru. He has a special purpose in life, this I know! Your little guy is touching so many people in so many ways. He is the modern day savior in my opinion.

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  17. Totally voting!!!! Im telling everyone i know to vote!!

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  18. Just wanted to let you know that your precious little man is in my prayers.

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  19. I LOVE this little man.....he has won my heart.....and you, my dear girl, are the best mother in the world. God bless you every day....you are in my thoughts and prayers.

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  20. Courtney,
    You are so amazing. Tripp is such a tropper! Love the flyer idea I'm going to print it out and pass them out. You two continue to be in our prayers. God bless

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  21. I changed my profile pic on FB to your flier and posted this on my wall. Lots of love to Tripp and continued prayers for him!

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  22. Oh he is in the ZONE in that last pic! I love it! Rock on, buddy. GREAT IDEA on the flyers, and I will be telling our blog about the reader's digest thing TODAY. Much love, Tim & and Ang

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  23. I admire you Courtney and Tripp is so blessed to have you as a mommy. Lots of love!!

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  24. I voted for you 4 times! Love your blog. Your a strong mother, wife, sister and daughter! I admire your outlook and everyday make me thankful for what I have. Keep it up.. and we will continue to keep you in our prayers. My 1 and 3 year old always pray for baby tripp (even though he is not a baby!! )

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  25. I voted! I hope that you win.

    I am praying for Tripp's good response to the new meds. God bless you all.

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  26. Voted! You are so inspiring! Reblogged your story as well to spread the news!

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  27. Beautiful. That sums everything up for you and Tripp. Just beautiful. Voted!

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