Update and Pics.

Hi... So we were supposed to go get Tripp's bloodwork done this week, but the nurse who draws his blood has not been available.  So again, we will postpone for Monday.  He actually has been having some good moments the past few days.  He got in his walker twice and scooted around (something he hasn't done in months).  And he's been standing up on side of the couch more, too.  I think he might be getting a little bit of his strength back.  I'm trying to be careful what I say because I almost ALWAYS jinx myself.  Like the other day, I was going to post his video in his walker... but ended up not having a chance.  And then he had a REALLY crummy day.  So when I say he's had "good moments," I mean exactly that... moments.  He's not really pulling up his legs in pain anymore, but he's still running little low grade fevers.  

And like I told my mom, we are only putting the topical treatment on the spot that we cultured and came back with pseudomonas- but he most probably can have it in other places, too.  So since he's resistant to the Cipro... the topical could be treating that one spot and nothing else.  So I don't know, we will see when we get the bloodwork back.  

And I have GOT to do something about his mouth soon.  Whether it be fighting someone to just put him asleep and just LOOK in his mouth to actually find out what's going on.  No one (whether it's a second, third, or fouth opinion), is going to be able to actually get a good look in his mouth unless he is under anesthesia.  HELLO. 

Every bath day lately, I think my mom, Tripp and I all have anxiety.   Baths have been BRUTAL. So I got in touch with Dr. Defusco and she told me that for bath I could go up on his morphine dose because he's on the lowest dose now.  So I did.  I doubled his dose... and my goodness, it sure helped.  Not the actual water part, of course... I don't know how that can't hurt no matter what- but after we got him out.  He was actually dancing to Elmo while we redressed him.  He wasn't drowsy or anything... he actually "sat up" to let us do his arms, which he hasn't done in about 6 weeks.  But you could tell he was a little bit in la-la land- but in a good way.  He was smiling and dancing... and mom and I even jokingly said "he's probably seeing things."  But I don't care if he was seeing blue elephants... as long as he wasn't hurting.  The past two days, we also started Ativan (anti-anxiety) with the morphine- but I think it's making him MORE anxious and irritable... so I don't think I'll be giving it anymore... at least not with the morphine.  I'm trying to wean the morphine, by giving a little less and a little less often.  But he's still acting like he needs it at times.  Nights have been rough lately.  It's like he doesn't even want to lay in the bed- he'd rather me be rocking him.  So if anyone has one of those old beds that you put a quarter in it and it rocks or vibrates... let me know- I'll pay anything :)

So thank you all so much for your post requests for EB Awareness Week coming up.  They are all great questions and I will try my hardest to answer all of them throughout the week, starting tomorrow!  My "blog friend," Jenifer (who helped me re-do my blog), also helped me create a graphic for my posts for the week, and she also added a grab button to the blog- on the right sidebar, so that when EB Awareness Week starts, if anyone wants to add the button on their blog they can.  Thanks again, Jenifer.  You're the best! 

"Mom, are you sure I should be taking these?"

(these are his probiotics... don't worry.  He likes to shake them to make noise)

"If I could just get this one toy... right... here."

Love,