Tuesday, February 9, 2010

Please help spread the word...

Jonah's EB Auction
Hey guys... Please help spread the word about Jonah's EB Auction.  It is an online auction to help raise money for Debra.org to help find a cure for EB!!!  The link to his EB auction is:
And there is also a button on my sidebar that you can click and it will bring you straight to the site.
There are going to be a ton of items to bid on and all of the proceeds will go to Debra.
The auction will run for 5 days before Jonah's first birthday (February 27th).
Please, Please spread the word to help raise money to find a cure for EB... Do it for all our EB children: Tripp, JonahLeahSam, Casey, Evey, Elly  and all other EB kids.
Thank you so much!!


Tripp is doing well.... considering everything he has going on.  He is such a wonderful, wonderful child.  I know I say that all the time... but my goodness, I don't know HOW he smiles so much.  Don't get me wrong, he sure has his moments of pure pain and misery.... but in general, he's an angel.
I called a home health company today... PSA Healthcare.  A nurse that fell in love with Tripp while he was in the hospital, Kristi O'Brian, wants to start working for this company so that on her days off, she can come help me with Tripp.  Even if it's to let me nap, or come to the doctor with us, or help me set up bath.... anything will help me.  Plus, she's become more of a friend so I would trust her completely.  That's the most important thing.  So I'll let you know how that goes... it might take a little while to get put in place.
Nights have still been pretty rough.  And it's just impossible for me to nap these days.  MeMe and PawPaw Carey are in town and my mom comes during the day... so I could sleep, but I've just been visiting and cleaning up instead.  We have an appointment with the GI doctor on the 11th.  Hopefully she will be able to give us some good nutrition tips.  I'm just not sure if I need to be giving him a higher calorie formula since he's not eating solids.  He's not losing weight, but I wonder if he would heal better with a higher calorie formula.  We will see...
Bath time has been okay... not great but tolerable.  I guess if you would ask him it'd be different.  He of course still hates the water on his legs, even the salt water (saline mix, supposed to take the sting out).  He's been getting "extra wrapped" lately just to try and add a little more padding because we are having to handle him and he's moving so much more.  He has a TON of teeth that are making new sores everyday. But overall, things are going well.  He is just SO SO SO much fun and learning new things each day.  He is ROTTEN to the core, but it is WELL deserved.  He loves when you sing to him and will stop in his tracks when you start singing.  When you say, "Shake it, Shake it" he starts shaking his arms and wiggling his feet.  It sure is adorable.  We are trying to bring in a little bit of sign language so he can start to learn how to communicate with us, because I don't know when he will be getting his trach out... but I don't think it will be any time soon.

Anyway, here are some more recent pics...

We got Jonah's 1st Birthday party invitation in the mail!! 
He loved it... it was like he knew "That's my buddy."

Love you, Dad.

Happy Birthday, Papa!  The big 49!
Now cut that cake!


  1. He is so adorable in these pictures! I hope it all works for you to get some extra help in that you can trust. Praying... :)

  2. Hello..I am so glad to hear you will get some help..I see me in you. like I said when casey was born, I said..I will do it all myself..it's my job...But it's just not a job I can do myself and still function..I still do not have the ability and he is almost three, to allow someone else to wrap him completely or bathe him..that's my part..they set up baths, set up supplies, distract him while I wrap, refill prescriptions, accompany me to the doctor..carrying all the supplies..they do wash and diapers and order supplies (according to the list I make)..at night they suctioned him while he slept, turned off pulse ox's that beeped when he bent his arm, and feeding pumps that finished..when he cried from pain or something else..I took care of him...I am just a control freak with him..like you...:) and they know it. ..I am able to run an errand, sit outside with a cup of coffee or do an activity with my other children. I started the same way..with a nurse that took care of him in the hospital who loved him and came to work for us..I have had my four nurses since he was one..and they love him like their own ..and I love them..they are friends to me and to him..he adores them..and little by little as time passes and you develop a trust ..you will begin to let go enough to keep yourself healthy...and my mom and sister helped hours a day but with a nurse sometimes, they get to be "aunt" and "grandma" for a change..IT is no refection of your ability to parent...You are amazingly inspiring to me..everyone who has ever met or spoken to you knows it and you need to be confident in that yourself...It takes a "village" to raise a child..esp. one with special needs..dont feel like a failure asking for help..I went through those emotions myself..Your son will gain very special friends in the girls that come to care for him..
    Your son is going to surprise you every day of his life..you guys are always in my thoughts...Hugs to little Tripp from his friend casey...

  3. I use to use baking soda in my baths as a child. It didn't hurt as much when I used it vs plain water. I never measured it, just dumped some in and mixed it up!

  4. JUST PRECIOUS! Hey I wanted to mention to you about the sign. (my Noah is deaf from the meds he was on the first 11 months in the NICU) There are very entertaining videos that you cen order, Signingtime.com ALL three of my children know sign language and these videos are wonderful! Alex, Leah and Rachel make it fun to watch. They have Baby Signs as well. Tell Uncle Carey to call me or mother and I can get some videos out to you guys!

  5. So good to hear that you may have someone who has a history with Tripp to help you out! What a blessing!!! I LOVE to see pictures of your little man, those eyes!!

    Praying for peace and comfort is a few moments for you....

  6. Love the picture of Tripp looking at Jonah's card. So sweet :). Always praying for Tripp.

  7. Courtney, I'm so glad to hear you may be getting some help with Tripp that knows him as well as someone you can trust. If anyone deserves it you do. I really like the new pictures of Tripp . The one of him holding & looking at his invitation of his friend Jonah is precious. He's one precious little man with the most beautiful eyes and smile. Take care & God Bless. I love ya'll & will continue to keep ya'll in my prayer's. Please give Tripp a kiss & tell him I love him with all my heart & soul.