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!

Christmas cards...

SO... I had a few great ideas for Christmas cards. You know, dressing my little man up and taking all kinds of cute pictures. Well, I've been trying to take the pictures now for about 3-4 weeks and it has yet to work out. I wanted to take a family picture outside. We even got him a cute little polo and some jeans (which he NEVER usually would wear.) But every time we plan to take pictures, it never works out. Either it's raining, it's Randy's late night and it's already dark, or Tripp just finished his 2 hour bath and dressing change and he is completely pooped out and I would get child services called on me if I tried to put him in long sleeves and jeans. SO, I think I decided that I am just going to do an "online" blog Christmas card, if that's okay with everyone. I'll just put a few pictures that I took of him and maybe if we get a chance to do our "family portrait" I can post that one, too. I just think it's too late for me to try and print a million cards. We have so much family and so many friends that I want to send them to, that I really don't know if I have time to get them out now... and I would be scared I would forget someone and then I would feel horrible. I am really sad about it though because it's Tripp's first Christmas and I really wanted to send out cards... if you know ME, i've wanted a little family and to be able to send out family Christmas cards for about 10 years now!! haha... BUT like everything else, I think it's best I do it this way. That way everyone who reads the blog will get a Christmas card!! I don't even have time to eat lunch during the day, so I doubt I'll get a chance to address all those cards!!

Anyway, Tripp had a REALLY good night last night. I only had to get up 2 times before 5 AM... that is AWESOME. I can totally live with that. After 5, he started with all his "morning yuckiness." But I really feel rested this morning. Hopefully my energy will last through the day and I can get something done today. Maybe I'll even cook dinner, haha. But lately, I've just been feeling so stiff. Everything on my body hurts, from my head to my feet. I just need to start SOME kind of exercise. It's really hard to find the time to do that when there is NO kind of schedule going on in this house!! I told my mom yesterday that I wanted to try and get out of the house and maybe drive to Ponchatoula (my hometown, where my parents live) but then I came to my senses. I really just don't think we're ready. As much as I want to, there is really no safe place for me to pull over if I would have to suction him. It's pretty much all interstate... and it's a BRIDGE interstate, so it's not safe for me to be pulling over and getting out. AND, not to mention the fact that things are kind of starting to get better and I don't THINK he has a cold right now (his nose has been a little more runny, so I hope he's not catching another one) so I don't want to take him out in the cold and around people and risk him getting anything. That would be kind of silly on my part. SO we will just stay home, no biggie. I was thinking last night in the shower... you know, some people don't even have hot water to take a shower. Thank God that I have hot water to be able to enjoy my shower. And thank God we even have a house to have to sit in all day! Not everyone has that you know. I'm just really starting to realize that I have a WHOLE lot to be thankful for. And I know if Tripp could talk he would probably be like, yeah mom, what do I have to be thankful for with all these sores??? But it's true. I'm thankful I HAVE him. Blisters and ALL!! I wouldn't trade him for anything else in the world. I think you guys know that by now!! Ha.

Tripp's dental surgery is still scheduled for December 31st. We will probably be going to see the dentist next week.. and the ENT (gotta fit them all in one day!) So we will find out if everything is still a go, which I'm sure it is because his mouth has only changed for the worse. The only thing that makes me nervous is if the teeth come out and he is still getting sores. But we will just have to see. I know the sores right now are definitely 100% from his teeth. So hopefully it will help something. If not, we will just deal with it like always!!

Nana came over to help on Wednesday. It's always nice to have the extra help and the adult company most of all!! Maybe I should give you a family tree for all of you who don't really know, it may be confusing!! We have a big ole' family!!

Grammy- my mom

Papa- my dad

Nanny- my sister (Tripp's godmother)

Uncle Jason- my brother

MeMe- Randy's mom

Paw Paw Carey- Randy's step-dad

Uncle Ryan- Randy's brother

Paw Paw Moose- Randy's dad

Nana- Randy's step-mom

Aunt Becca- Randy's sister

Aunt Nay Nay- Randy's sister

Okay, so that's just so you can have an idea of who I'm talking about when I use the names Tripp uses!! I know, we've got a LOT of LOVE!! Isn't it great?? And that's just immediate family. You should see the rest!!! We are SOME lucky!! Family and friends... WOW, we are really blessed. There is not a day that goes by that I don't wonder why God sent Tripp to Randy and I. And I always tell myself that it's because we have the physical and moral support that to get through this and to take care of this baby. Thank all of YOU for the moral support!!

Smiles!!!

Sitting up like a big boy!

Okay, don't call child services,... he really did like it, though it may not look like it.

Every child needs to play in a box, don't you think?

This is the box all of his supplies come in.... I get two boxes this size a month!!

My Tiny Elf...

"Living a life of faith means never knowing where you are being led - but it does mean loving and knowing the One who is leading. It is literally a life of FAITH, not of understanding and reason- a life of knowing Him who calls us to go."

-Oswald Chambers