I Hate EB.

Did I ever mention that?  It just plain sucks... there is no other word for it.  Yes, I know that there are so many cruel diseases and disorders out there... and none of them seem fair.  But EB has to be one of the most horrible.  I hate it with every ounce in me.  I hate that my son and other babies have to suffer every day from something that has no cure.  I hate that we have to live everyday knowing that this will be our life and his life and it will never go away.  I hate that this disease takes the lives of beautiful and innocent babies.  I hate that it consumes families and does not allow them to have a normal life.  I hate that people out there don't realize the actual severity of the disease.  I hate it's 87% mortality rate in the first year of life... it makes me cringe.  I hate that my son will never have fingernails or toenails.  I hate that he will spend his life wrapped up in gauze and we will never get to see his skin.  I hate that he can't put food in his mouth because it hurts so bad.  I hate that he is miserable unless he is on steroids or pain medicine.  I hate that we can't go anywhere (out to eat, shopping, where ever..) because we have to suction him so much.  I hate that we have to be so careful of people touching him or holding him because he might get normal baby stuff like a cold and it could be life threatening.  I hate when he falls asleep on his side, that when he wakes up his ear gets stuck to the blanket and bleeds.  I hate that every day I am peeling skin off of another part of his body.  I hate that I have to feed my baby through a tube.  I hate when he looks into my eyes and I know he is hurting and I can't do anything about it.  I hate EB.  I hate it.  There.... I got that out.

We have been at my Mom and Dad's house all week.  We are in the process of adding on another bathroom and living room to our little house.  There was too much dust, so we had to get out.  It took us 2 carloads FULL to get everything here.  It's been a nice little get-away, and I've felt better because my mom and sister aren't traveling back and forth to Norco for this week!  Tripp has been pretty miserable... on and off, but I'm pretty sure it's because he got off the steroids.  I called the doctor mid-week and started him back on a low dose, but it's not working as well as starting him high and tapering him.  So she is going to check back with us tomorrow and see how it's going.  Hopefully we can start him at a higher dose and taper him again.  Last night he finally slept a little better, but the 2 nights before were a nightmare.  I was just plain worn-out.  But then I kept thinking about if I didn't have him here and I didn't have to get up at night... I would be lost!  That made it a lot easier, knowing that I live every second of my life for him... and what I do for him makes his life a tad bit easier.  I just wish he could have a little pain relief sometimes.  It's emotionally exhausting watching him hurt all the time.  But on the other end, when he is on pain medicine and steroids, it's like the happiest moment of my life when he's happy and smiling.  I'm just ready for him to be able to TELL me what's wrong.  And maybe I can help better.  It's hard knowing what's hurting when anything or everything could be hurting him.  It just really stinks.  But on the bright side, he could not be ANY cuter and ANY sweeter.  And I just LOVE him with everything inside of me.

I'm sorry I've been slacking on the posting lately.  I've been a little down in the dumps for several reasons.  It's just really hard being so positive all the time when you just feel like you want to SCREAM! And I know I'm speaking for all the EB mom's out there.  You try to be positive and thank God for all your blessings but sometimes you just want to say, "How in the world are WE lucky??" And it's so easy to think like that and to get down and out.  But when I really stop and think.  I really am blessed and I really do have a LOT to be thankful for.  I could be doing this without my AWESOME family.  And I could be doing this without all of the benefits that have been put on for Tripp.  That has helped us TREMENDOUSLY.  I don't think we could make it without having the money in his fund. Thank GOD for the people who have donated their money to help our son.  THOSE are the things that make me say I am blessed. And even though everything about this disease is just horrible, at least we have people who LOVE us and care enough about us to actually know what we are having to go through.  God bless the people who try and make our lives as stress-free as possible and God help those who try and add more stress to our lives.  Because God knows we don't need that!
Thank you so much for all your continued love and support.  It means the WORLD and it gets me through the day.

Tripp and Daddy

Tripp and Papa

Tripp and Aunt Lydia

Tripp and Grammy

Tripp and Nanny outside!

Love for our little man.

First of all, I should probably apologize because I've really been slacking on my posting lately.  It's just hard to find things to write about when you do the SAME thing over and over every day.  And things have been a little nuts around here lately.  Tripp has been getting mucus plugs again.  Yesterday and the day before he woke up in the morning with a plug.  Started crying through his mouth, turning blueish-grey. The first time I got it out with saline and the ambu bag.  The second time, I had to change out the whole trach.  I couldn't figure it out.  Because he stays on the trach collar humidifier at night.  Finally, I realized it was the heater.  The vent is right over his crib in my room.  Now remember, our heater does not go over 68 degrees... I'm not trying to give my little "wrapped up mummy" a heat stroke.  But I guess it was enough to dry him out.  And Randy and my sister both tried to close the vent off, but it's stuck.  So last night the heater just stayed off all together and we put a little floor heater in the room by our bed.  And guess what?  NO mucus plug this morning.  Not yet, at least.  Tripp is still sleeping and yes, I know I should be sleeping too, but this is the only time I have to do anything.  It seems like every time I would sit down and try to blog lately, I would have to get up and do something.  And I ALMOST have all my Christmas shopping done.  I am buying every single Christmas present online.  I know, UPS is gonna HATE our house.  But it's the only possible way for me to do it.  We haven't been out of the house in, well.... a very long time.  And that's okay.  I want to feel comfortable taking him out, and I'm not comfortable doing that yet.  He's doing much better with the secretions.  I'm still suctioning a good bit, but not nearly as much as I used to.  Yesterday was bath day.  My mom and dad came over, and Randy and my dad BBQed outside while my mom and I did bath inside.  I was completely dreading bath time yesterday, because he has been getting more blisters than usual lately and some spots are completely RAW.  But you know... it wasn't as bad as I thought it was going to be.  He continues to amaze me every day.

Last night after my parents left, I got everything set up for bedtime, I straightened up the house, I took my shower... and we were all in bed for around 9:30!! WOW, that never happens.  But, of course, Tripp was sleeping and I wasn't tired.  Imagine that.  Last night was the first time in a long time that I cried.  I think it was because I wasn't running around trying to get things done, he was sleeping so I wasn't standing over him waiting for him to fall asleep... I actually had time to THINK about what is going on.  I hardly EVER have time to stop and think about everything that goes on in this house.  I was sad.  Really sad.  It's just really hard to have to watch your baby live like ours does.  The sores, his poor mouth, the coughing and choking, not being able to breathe.  It really messes with your head.  You feel completely helpless all the time.  But I never even get a chance to feel sad, or be depressed, because every time I even start to feel that way.... I think of all he is going through.  He knows when I'm sad, and you may think I'm crazy for thinking that.  But he absolutely does.  If at anytime I start to cry... he just stares at me... not moving, not being fussy, nothing.  Just stares... like he's thinking, "Mom, are you okay?"  So I really try not to cry in front of him, even though I am sad all the time.  Except of course, when he is happy.  Nothing in the world could make me happier than when he smiles.  It's truly like a miracle.

I don't know if you read Jen Burns message on Tripp's caringbridge site on December 4th, but it really made me think.  Of course as Tripp's mom (and all the other EB moms), I am going to pray for a cure for my sick baby who is suffering.  But what if that is not God's plan or God's will.  Like she said, HOW GREAT will Tripp's reward be when he gets to heaven.  What if God is using OUR SON for something bigger than we could ever imagine.  He's already changed MY life and MY husband's life.  Maybe he has to suffer so that other's can realize how precious their life is, how lucky they are, and how blessed they must be.  I know I've sure realized that.  Tripp has opened my eyes to more beautiful things than I could have ever imagined.  He's made me realize what TRUE love is, he's shown me the TRUE meaning of FAMILY, and has proved to me that God picked Randy and I to raise a child who is suffering so that he could know what real love is.  I just keep thinking, what if Tripp had parents who didn't care or didn't love him, or hold him and squeeze him constantly.  What if he never got told "I love you."  Would he be in more pain?  Do we lessen his pain by loving him and holding him and being there 100% of the time when he is hurting or crying? If we didn't act like silly, crazy people in front of him every day so he will smile, would he ever smile??  Do we make him a happier baby by kissing him a million times a day?  I think so.  And like Jen said, God told us..."Blessed are those who weep, for GREAT is their reward in HEAVEN."  Thanks Jen.

"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do."

-Ephesians 2:10