Tuesday, January 26, 2010

Doctor Visits...

Okay so I know that it's been forever since I've written... I'm sorry.  You know when you just get in one of those funks... well I've been in one of those for a few weeks now.  And every time that I started writing a blog, it always got interrupted by me having to get up and do something.  And Tripp certainly has a "Mommy's about to do something she likes to do" sensor.  When he was born, I kept telling myself that it's only going to get easier because we are going to learn everything that we need to know and do.  But boy was I totally wrong.  There hasn't been a day yet that I've thought, "Wow, things are really getting easier."  I cannot wait for that day.  He is absolutely 24 hours a day.... 7 days a week, non-stop.  And I know what you're thinking,  'Why in the world isn't she getting someone to come in and help her?'  But the fact is:  I am Tripp's Mommy and this is my job.  I don't want someone else in my house doing my job.  AND, it's not that I can't physically do this, it's more difficult emotionally and how is someone coming into my house going to help me stop hurting when I see him in pain and see him struggling to breathe?   I know when I have had enough and I have my family here for me to let me rest when I absolutely can't go anymore.  The bottom line (and I hate to say this) is that I don't know how much time I am going to have with Tripp.  I may have the rest of my life or I could have only today.  But with all that's going on and with the odds against him... I certainly am not taking any chances.  I want to be in front of his face for every smile, every tear, every moment of his life and I will cherish every single second we have together, because I don't want to have any regrets.  No, this is totally not what I wanted, not what I expected, and definitely NOT fair, but it was handed to me... it hasn't been easy and I don't know if it will ever get easier.  But I am so in LOVE with this child that there are no words that can express what I feel when I look at him.  And that's all it takes to keep me going.  The nights haven't been so bad.  I'm getting up to suction a good bit, but then he goes right back to sleep.  He would definitely be sleeping through the night if it weren't for all the secretions.

Anyway, we had 2 doctor appointments today.  First we saw the eye doctor, then the ENT.  The past week I have started noticing that the corner of his right eye was a little swollen.  Then it started having a lot of drainage and now there is a piece of what looks like red beefy skin hanging down in the corner of his eye from his top eyelid.  The doctor said that it could be one of two things:  Symblepharon (which she said is sometimes seen in EB but I've never heard of it, where the tissue from the eyelid can fuse to the eyeball).  She said if that's what it is, then it will eventually need to be snipped (in the Operating Room... ugh.)  OR it could be a dermoid cyst, which won't go away but we can keep the swelling under control with the steroids (surprise, surprise).  So she referred us to a specialist because if he does need surgery eventually, she doesn't do that... the specialist does.  So we will see him next week on the 2nd.  She gave me some antibiotic ointment until then.  WHAT DO I THINK IT IS?  She couldn't really open his eye to see in it because he was so upset, but when he was sleeping and I lifted his eyelid, it sure looked just like a big sore to me.  Probably from rubbing his eye so much.  But who knows what it is?  I'm not the eye doctor.  Only time will tell... we will see if the antibiotic ointment helps I guess.  And if I could pry his hands away from his eye and keep him from rubbing it maybe one day it will have a chance to heal!  So then we saw the ENT.  I went back to her because the custom trach she ordered that I waited 2 months to get in (glad we didn't have an emergency) was the wrong trach.  It was shorter, not longer.  Which wasn't exactly a horrible thing, because it went in on top of the other sores. In fact, maybe it was heaven sent.  But for some reason my suction catheters that I was using (8F) don't fit in this new trach (and it's the same diameter.)  So I am having to use some smaller ones (6F) that we got from the hospital when he first got his trach.  And the smaller ones just don't do the trick when it comes to suctioning our all his secretions.  So we are having issues with that, but we will make it.  Anyway, the ENT said that from what she could see his airway looked pretty good!  So maybe changing out the lengths and the steroids will do him good for a while.  And I'm sure all of your prayers are working!  Thank you all so much and please keep them coming!

Oh and I want to send a HUGE Thank You to Leah's mom, Meg.  She sent us boxes of stuff, bandaging supplies, trach supplies, ointments, you name it.  It was such a huge help, especially since our home care company stopped carrying our duckie collars!!  Thanks, Meg.  I know that wasn't easy for you to pack all of those things up, but it was such a blessing to us.  We love you guys.

Once again, I'm sorry I've been such slacker with my posting... but please don't give up on me!  I guess I shouldn't promise I will post more often because it's just been impossible for me to sit down and have the time to do it.  But thank you so much to everyone who has been emailing me in concern.  I truly appreciate it and it really makes me feel good to know that so many people out there care about us and follow my blog!  All over the country!  There are really some amazing people out there.

Now for the pictures....
This is him right now as I'm typing... HINT: that's why I'm typing...

4 generations.

Tripp with his baseball... Oh so precious.

Falling asleep during bath...

Geaux Saints!

Who Dat, Daddy??

Tuesday, January 19, 2010

Quick update.

Hey guys.  Quick update because we had a really hard and busy day.  Tripp is already sleeping so I need to go to bed.  We went to the ENT today and she looked down his trach and said that the blisters were all around the outside of his trach in his throat.  THAT JUST PLAIN SUCKS.  There's really no other way to put it.  Sooooo, she put the longer trach in and it bypasses the blisters but he is still sucking up the side of his throat when he breathes.  So we will have to wait and see if the longer one makes new blisters and if the old blisters heal by that time....  Don't ask me what we do if they don't heal or get worse because I have NO clue.  He's still on a pretty good dose of steroids everyday and the ENT started him on a high dose of Pulmicort, which I give him with the nebulizer (the breathing treatments).  So we will see if that helps with any swelling he might have.  ?????? Anyway, we came home and I was pretty upset because he wasn't breathing good and he was miserable.... but as the night went on, he started feeling a little better.  So please say some prayers that things stay okay.  It is so hard to describe how it feels to see him struggling to breathe and in so much pain.  We skipped bath today so we didn't get him anymore worked up than he already was!  OK, going to bed.  Will update again as soon as I get a chance.  Thank you so much for all of the support.  It is VERY MUCH needed.

Pics from Sunday's bath:

Saturday, January 16, 2010

She's a Butterfly...

This is dedicated to Little Lady Leah... 
and to her parents, Meg and Jeff.
Spread those wings, sweet butterfly. We love and miss you.
Visit Leah's website.

400 Pictures from the Past Week... haha

This poor child will not have ANY pictures of himself to look at when he gets bigger....

His girlfriend Minnie.

Watching the Big Green Tractor song on Mommy's phone.

He is now starting to play Peek-a-Boo.
Where's Tripp??


I love you!

Watching Mickey Mouse with Daddy.

Fell asleep during bath time.

And poor baby doesn't have ANY toys...

Can you see my teeth??!

His cousin Elizabeth. Isn't she beautiful?? I told him he will have to keep those boys away one day!!
He wasn't too sure about a girl, though. All his friends are boys!!

The NEXT bath.... he fell fast asleep again.
Poor man, it wears him out.

My baby's poor precious fingers.

And his gorgeous eyelashes.

Happy 8 Months Tripp!
Aunt Mary T. made him an ADORABLE cake!!
And it was SOME good!
Thanks Aunt Mary!

Yum, this doesn't taste like carrots.

Geaux Saints Geaux!!

Uh, Mom... I'm TRYING to watch Mickey Mouse.

Eating all by himself. Too Bad he got about one bite in before he choked.

Some videos from the past week...

Watching the Big Green Tractor Song...

Singing Happy Birthday...

Happy Feet to the Hot Dog Dance...

Thursday, January 14, 2010

Happy 8 Months Baby Boy

Today is Tripp's 8 Month Birthday... Can you believe it?? He is growing like a weed... Thank God. He is now sitting up by himself for up to about 15 minutes at a time. He is grabbing at EVERYTHING and putting it straight to his mouth (probably because he is cutting every single tooth he has right now... No, really EVERY one... molars, canines, everything.) When he is happy and excited, he wiggles his butt and kicks his feet and waves his arms. He has the cutest smile I have ever seen. He is grabbing at his feeding tube every time I feed him and even holds the syringe for me! He is now putting a little bit of weight on his legs when you stand him up, which we don't do often because he HATES it. He is transferring objects from one hand to the other. And he is absolutely the BEST baby in the whole world... with the BEST disposition.

We have been doing pretty good, except for the sleeping at night and a few trach problems. Last night was a little better than the rest of the week, he was up about every hour. Which is good lately. It's amazing how much "a little bit better broken sleep" can make you feel. He is still on the steroids and we are going to try and keep him on a low dose for a while until I can figure out what I want to do about hid mouth FULL of teeth. They make his sores look better and I guess make him feel a little better. We have been extremely busy around here, trying to get back in our house. We added on a bathroom and a living room. That way Tripp can have his own bathroom and we can make the other living room his playroom with all of his toys (without all of his dressing supplies!) Our house is reallllllly old, so it was way too small for us. Now we have so much more room. It feels great. Tripp still isn't sure where he is when he's in his new living room, but he will get used to it pretty soon. And he will LOVE his new playroom when it's finished, I know it!!

We will probably be going to see the ENT tomorrow. He has been coughing a whole lot and had some small amounts of bright red blood every now and then coming out of his trach. So I just want to make sure nothing is going on down there.

Sunday, January 3, 2010

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!