Update

Hi guys.  Tripp has been doing great- almost so well that I don't want to post about it and mess anything up!  He has been a TOTAL ham these past few days.  His eye looks awesome and his trach is tolerable.  His poor raw butt- not so much.  (Thanks to everyone who commented with ideas- I've tried them all... but every time he pees, it soaks everything!)

Tripp is just dying to start moving around.  He is a lot more active these days- which of course causes more blisters.  A lot of the time, he only wants to be standing- which consists of someone holding his hands while his cute little legs are just shaking.  Walking is no where in his near future- BUT at least he LIKES to stand.  That's a step in the right direction. 

We took him back to the dermotologist on Tuesday and she said that his bloodwork showed that he does have the enzyme that he needs to be able to start this new drug (Dapsone).  If he didn't have the enzyme, then he would be at risk for anemia.  After he starts this new med, he will have to have bloodtests done every 4 weeks- ugh.  (It is NOT easy to get blood from an EB baby).  This medicine is an anti-inflammatory drug and it's purpose is to one day take the place of the steroid long term, because the steroids can cause so many problems if on them long term.  I have to say, part of my is scared to start something new while he's doing so well (hence why he hasn't started it yet).  But I'm thinking I will start him on Monday.  It's worth a try, I guess. 

I've had a lot on my plate (not Tripp related) lately and haven't really had the energy or the sanity (if that makes sense) to post.  I've just been enjoying my little angel, I guess.  Something that for a while was hard to do becuase he just never felt well enough.  I will try to post some pictures soon- I haven't had my camera, so I've had to take phone pics:)
Thanks again for all the love and support!  And thank you for the prayers for our family. 

Could you please say some extra special prayers for Daylon and Bella.  They are both on dialysis now.  But Daylon and his family need much love and support at this time- he had a seizure last night and was going in for emergency brain surgery through the night.  He had a bleed in his skull (outside of his brain) but the pressure could still cause him to seizure again.  My heart just breaks for these kids and their families. 

Love,