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

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