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:
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, Jonah, Leah, Sam, 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!