Update

Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you:

But rejoice, inasmuch as ye are partakers of Christ's sufferings; that when his glory shall be revealed, ye may be glad also with exceeding joy."

1 Peter 4:12-13

Hi guys.  I know you are all wondering how Tripp is doing after surgery.  Well, he is definitely able to open his eyes more.  It still seems painful, though, as he has an abrasion in the right eye and that granulation tissue rubbing against his contact in the left.  I don't know how he opens them at all... But it sure is nice to be able to see both eyeballs again.  I wish I could say that the eyes were the only problem and that he's better... but that is definitely not the case.  Lately, the Motrin and Tylenol with Codeine isn't even giving him relief.  He has been playing more the past 2 days... like mabe an hour total a day.  But last night's bath was THE WORST to date.  I don't know what was different- but he was in EXCRUITIATING pain.  And completely inconsolable. 

 Something else is going on (and I know you've figured this out) but in EB, it's all about fixing one problem at a time.  I just don't have a clue what's going on.  Mom and I are thinking now that it could be his mouth (an abcessed tooth, cavities, or something else we are missing other than all the big huge sores).  And his poop has been a little sour-smelling lately, so something could be going on GI-wise, too (sorry, I know you really wanted to hear that).  OH- and GET THIS----- last night he was running 100.7!!!  No, it's not a really high temp (or in a normal child, a temp at all) but for him- this is a sign of something going on... he always runs between 97.5-98.5.  BUT- what did I tell you would happen???  The cycle would start again?? Surgery, fever, antibiotics, diarreha, blah blah blah.... Just please say a prayer that this is NOT the case AGAIN! 

Anyway, here is the deal with the dentist.  She called after our visit and told me that she wants a second opinion before we put caps on his teeth.  She said she spoke with another dentist that had to prep an EB child for crowns... and apparently they have to spray a bunch of air and stuff in the mouth- to clean I guess... and she said that the child's skin just started sloughing off.  So, she wants to get a second opinion and see if the caps are going to be the right option.  I guess the other option would be to just put him under clean his teeth and check for any abcesses or anything else that could be bugging him (besides the 4 million sores in there).  So I guess that is what I will be doing on Monday... trying to get in with another dentist soon so that we can figure out what to do with his mouth.  

This poor child still lays with Mom or I in the rocker all day long... stiffening his legs and pulling them up to his chest.  There has just got to be something else going on in there.  He's never acted like this, even with all the sores and pain he's had before he got sick.  I don't know what the answer is.  But all I can ask for is prayers... I'm afraid if I let my pediatrician know how awful he's feeling, we will end up in the hospital.  And that is the very last place we want to be right now.  Please say some extra special prayers that we can find out what is going on and that whatever it is... that Baby T has the strength to fight it off.  Love you guys SO much... and I cannot thank you enough for all of your comments and kind words... I laugh and cry with all the wonderful things you say.  I am blessed to have so many people care for Tripp and I.  Thank you all.  

“If you're not actively involved in getting what you want, you don't really want it.”

-Peter McWilliams

“Guilt is anger directed at ourselves -- at what we did or did not do.  Resentment is anger directed at others -- at what they did or did not do.”

-Peter McWilliams

"Emotional pain is just like physical pain.  When your heart can't take it anymore, you just go numb."

-Anonymous

Love,