Tripp's eye.

Hey guys.  The past few days have been rough.  Monday morning Tripp woke up with a swollen eye.  I'm thinking he has a corneal abrasion and he rubbed his eye so much in his sleep that he caused a huge blister under his eyelid, too.  So for the past 3 days, he has barely opened his eyes and when he does, you can tell he is in excruciating pain.  Corneal abrasions are common in Junctional EB and we have just been lucky that he hasn't gotten them until now.  It always something... everything was going good and then all of a sudden he wakes up with this.  He has been a totally different baby since Monday.... just plain miserable.  It's so so sad to watch him like this.  I mean, how much more can he take?  EB has to be the most horrible disease in the world.  I have been trying to keep him a little bit sedated with Atarax (like Benadryl) to keep the swelling down and make him a little more comfortable.  His pediatrician, Dr. Defusco, called him in some Tylenol with Codeine last night to help with the pain and try and keep him sedated.  She said the more that he opens his eyes, the more damage he's going to do to the abrasion.  I also asked her about some numbing drops, but she said that they would cause more damage as well, which makes sense because he wouldn't be able to feel it.  So Dr. Defusco is trying to get in touch with the eye doctor for me to see if there is anything else that we can do.  I've been having to keep the lights off and the fans off because it just irritates him more.  Talk about you might as well just put me in a looney bin... I can't get out of the house already... NOW it's a dark house that I'm sitting in.  I emailed Meg (Leah's Mom) Monday when this all started.  Leah would get the corneal abrasions all the time.  And I knew Meg would be more of an expert than anyone.  She's so great.  For info and for support.

This is such a hard thing to have to watch.  I pretty much almost lost it Monday night.  It's like, even with the trach, there is always something you can do.  Well with his eyes, there's just nothing you can do.  Will it heal?  I don't know.  The blister on his other eye still hasn't healed.  So it's just something that we are going to have to deal with.  That's what just stinks.  I just feel like I have been so positive and so thankful and then things just keep on challenging me.  It's so hard to be positive all the time.  But I know I have to be for him.  The worst part is that people just don't understand.   They don't get what really goes on in this house.  I wish someone could live our life just for one day because unless you live it, you just can't even begin to understand what it's like.  No, I don't get to get out of the house for any amount to time.  Randy and I don't get to go out to dinner together, or go anywhere together.  If I need something- ANYTHING, I have to ask my mom, or sister, or someone to go get it for me.  And sometimes, depending on the weather, I can't even take him outside because it's too hot, or too windy.  We don't get to lead any type of normal life whatsoever.  And please don't get me wrong... I live every single day to take care of my baby boy and I wouldn't trade him for anything else in the entire world.  But I'm not saying every day is easy either.  It takes everything in me to get up, put on a happy face, and keep going.  He is what keeps me going.  I know that my purpose in this world is to take care of my baby boy and give him the best life I can possibly give him.  And I fight each day to do that for him.  I want to take it away from him so bad... I want all the sores, all the pain, all the tears, everything.  But I know I couldn't handle it like he does.  I just want to hug him and cry... I could just do that for hours.  The way he's looked at us these past few days is just pitiful.  He's had such a sad look on his face and it makes me so so sad.  Please Please send some prayers our way (I know so many of you already do and I appreciate it SO much.)  Thank you.

Well, tomorrow is Talk Less Thursday, but I took way too many pictures in the last week to post them all tomorrow, so I'll post a few today, too.  These are all before his eye problems started...

Daddy's birthday cake...

Admiring his Daddy... 

Cheese...

Big Boy... all by myself!! 

First time sitting up in the tub!! 

He loved it!

Booty Butt Shot...

More to come tomorrow on "Talk Less Thursday"... 

Love,