Tripp's eye and Meg's Online Avon Event

We made a trip back to the doctor yesterday.  He said that the contact looks like it's in place but they couldn't stain the eye to see if there was an abrasion because the contact was already in.  Both of his eyelids are still swollen and red and his eye is constantly watering those big crocodile tears.  I got kind of frustrated with the doctors because they started acting like I just want to take Tripp to the doctor for fun.  They kind of insinuated that "nothing was wrong" there was just a little inflammation.  But they don't have to take him home and watch how miserable he is.  Don't get me wrong, I'm glad they think it's just a little "inflammation" but I know my son inside and out.... I pray they are right and it's not infected.  Because it's sure looking in that direction.

So anyway, his eye is the same.  He now has contacts in both, but his right eyelids are swollen and red.  The doctor wants to change out the contacts every 2 weeks.  Poor Tripp.  UNLESS the eye is healed.  Then we will try him without them.  That would be nice.

I found out this morning that baby angel Leah's Mom, Meg, will be hosting an online event to raise funds for EB through her online Avon store.  She is going to donate all of her earnings for the next month or so in honor of Tripp for his big birthday celebration.  Here's the direct link to her post.  Please check out her website and visit her online store!  The proceeds will be donated to help find a cure for EB!  Thanks, Meg!!  You're the greatest!

Here are a few pics of this past week/weekend and then a few of him this morning with his bo-bo eye, still smiling like a precious angel!!

Pat-a-caking with Daddy

Fell asleep mid-bath. 

Beautiful toes...

Smiling sweet with that poor eye... 

Oh, and I did not forget about your questions... I want to make sure everyone gets a chance to think some up :)

Love, 

Your Questions.

So I've been wanting to do a blog answering any questions that you all may have.  I know there are some people that leave questions for me in the comments, but then I don't have an email or contact info to answer you back.  So... every now and then I will try and do a post to answer any questions you might have for me about Tripp or EB or whatever... as long as they are reasonable questions, of course :)  So anyway, either leave them in the comments or shoot me an e-mail... and if I get enough of them, I will do a post and answer them.  I just don't want anyone to think I'm ignoring their questions or suggestions.  Thanks :

Another Contact...

So, Tripp woke up this morning with a corneal abrasion (so we think) in the eye that does NOT have the contact in.  I called to make an appointment and the doctors weren't in clinic today, but the nurse said she and the resident would attempt to put the contact in.  Ugh.  So my mom, my mother-in-law, and I loaded up the car and took him.  He was so miserable, poor darlin.  He was barely opening that eye and it was almost swollen shut and very red.  There are NO words in the English Dictionary to explain to you guys HOW traumatic that is for everyone... that is why we changed the other contact out while he was under anesthesia.  I wish we would have gone ahead and put a preventative one in the other eye, but you hate to mess with something that's not broken, ya know?

Anyway, so between a speculum, about 3 nurses, a resident, my mom and I holding down Tripp, and my mother-in-law trying to console me so I didn't absolutely LOSE it, and TWO attempts... we finally got the contact in.  It looked a little bit better almost immediately but then later on it started looking bad again.  He is sleeping now after his Tylenol with Codeine and his Atarax (like Benadryl).  So I am anxious to see if it really was an abrasion and if this contact will work as well as the one.  I'll let you know.  And then we went to Wal-Mart and bought him about 4 more toys because we all felt so bad that he had such a crappy day.  He doesn't have EVERY toy in the world yet, but he's getting verrrrry close. Seriously.

I think he got the abrasion being outside yesterday.  That's kind of when I noticed his eye starting to get red and then all of a sudden he wouldn't open it yesterday.  I loaded him up with drops and it looked better.  But then he had a HORRIBLE night and I was praying it wasn't his eye... and sure enough, when he got up this morning, he wouldn't open it.  He just cannot catch a break.  He seriously needs a glass room outside that is air conditioned so that he can be outside and enjoy it.  He LOVES it outside, but I can't really bring him a lot because of the heat and the wind and the pollen and etc etc etc.... it stinks.  I am NOT looking forward to sitting in the house all summer and I'm sure Tripp isn't either.

But, to top of the day, we get home and realize that our air condition unit is frozen up.  We run that sucker ALL day, every day... and we knew the day was coming we we would freeze it up.  But what else can we do?  If it's 65 in the house, Tripp is sweating.  I walk around in my fuzzy robe all day to stay warm.  We are in TROUBLE come summer.  With our house above the ground, the AC unit just can't keep up.  So we are going to let it rest for the rest of the evening and try it back on before we go to bed.  Hopefully it will be okay.

On a brighter note, I have had a very special friend named Jenifer (that I've never met!!) that has been working on re-doing my blog for me.  I am SUPER excited.  I have been wanting to change it up for a while and she offered to help me.  SO sweet, right??  Well, I'm not sure when it will be finished, but I am really looking forward to sharing it with you guys!

So please shoot a few extra prayers Tripp's way (again!)  Like I said, the poor angel can't catch a break.  And it is KILLING me to watch him in pain.  I think that is the hardest part to explain to people that don't get to see the pain that this poor child endures... from a piece of gauze getting stuck on a sore to his whole eye sloughing off... it's really really hard to watch.  But I also witness a MIRACLE every time this child smiles.  I really don't know how he is such a good baby.  And I really can't explain to you HOW good of a baby he really is.  I am SO blessed to have him.  And so so thankful he is mine.

Love, 

"Shoulders"

So I just found our that I was featured in a beautiful blog called "Shoulders."  I had never even heard of it until this morning.  What an awesome person to have come up with such a blog.  I was nominated by Jenifer, a special "friend" that I have yet to meet, but has been such a blessing to me.  Thank you, Jenifer.  Please check out what she wrote here.  And check out the rest of this beautiful blog as well.  I have the blog button on my sidebar. Thanks :)

You're invited...

I do not want to leave ANYONE out for Tripp's birthday party.  Everyone has been so supportive and so absolutely awesome... that I want anyone and everyone who would like to celebrate the biggest event of the year (to us =) ) to be able to come.  SO...

Please, if you WOULD like to join us in celebrating, please RSVP to courtneyhroth@gmail.com by the 1st of May!  I want to make sure everyone gets a hot dog! haha. 

I want to give a HUGE thank you to my Nanny, Linda, for helping me with the invitations by sewing the felt for me =) AND to the entire staff at my Uncle Larry's clinic for helping cut out Mickey ears!  It was such a big help!! 

I found the invitation online, but it was going to cost us a fortune!  So I decided to make them.  Hope you like!  Thank you to everyone for a year of nothing but love, support and a whole bunch of shoulders to lean on!  I wouldn't have made it through this without you!

Love, 

11 months, Surgery, Owen, and Pics

Happy 11 months to my baby boy!!  Only one more month until the BIG day!! Poor man had to have surgery on his birthday!

All went well today.  We left the house at about 6:45 and got to the waiting room around 7:45.  It was me, Randy, my mom and Randy's mom.  Randy and I brought him back to the pre-op area.  He was SO good... I know you aren't surprised, but I was just in "awe." I was proud of myself because the only time I started to cry a little was when I was holding him and the anesthesiologist said,
"Maybe we should give him a little versed because he might have some separation anxiety."
and I said, "Yeah that might be a good idea," and I looked at Tripp and said,
"Yeah, because you're gonna be sad if you have to leave Mommy, huh?" and he immediately started shaking his head yes.
It was SO freaken sweet.  And perfect timing :)
Anyway, so they gave him the versed first and he was HILARIOUS.  You could tell it made him so drowsy, but he was like a crazy man... that medicine wasn't getting him to slow down.  He was smiling, pat-a-caking,  and doing his cute little thing where we say "show us your muscles" and he holds his arms out wide and squeezes his whole body until he starts shaking.  He was absolutely a little precious angel.
The procedure took about 30 minutes (the whole thing) and then we went back to wait for him to wake up.  That's what took about 2 hours because the little stinker didn't want to get up.  They had drugged him pretty good, though.  But he looked GREAT when we saw him.  Very, very comfortable.
While he was under, before they did the tubes, the eye doctor took out his contact and checked his cornea and his eyelid.  He put a new contact back in because he said that the eyelid looked about 95% healed, but it still had a little raw spot on it and he didn't want it to scratch the eyeball again.  So we will check it again in about 3 more weeks.

OK, so now for my RAVE on Ochsner hospital... I cannot say enough about how pleased I am.  The doctors are one of a kind.  Every single doctor Tripp has been to has gone above and beyond to help him.  The anesthesia team has taken EVERY precaution possible to protect his skin.  His skin has looked absolutely beautiful every time he has come out of surgery.  The nursing staff has been so helpful and so understanding of everything.  They take a step back sometimes and let me step in... which I like because I know him the best.  If I was in that position as a nurse, I would do the same.  Just EVERYONE was SO nice today... from the lady at the front desk who checked us in, to every doctor and nurse and anesthesiologist.  It was nice.  It felt good.

So.... GET THIS:  There was another Junctional EB baby born at Ochsner hospital about 5 weeks ago.  I know.... it's still hard to believe.  His name is Owen and he is just plain beautiful.  He and his Mommy and Daddy (Katie and Allen) have been through some really rough times these past weeks.  Owen is still in the NICU at Ochsner right now, but is starting to improve and may be able to go home soon.
What are the odds that there are two Junctional babies in the same state that live about 30 minutes apart?? The geneticist told us Tripp was one in 2 million... so really that would mean there could be about (technically- 2.5) babies in Louisiana with JEB.  I mean, it could happen... well, it DID happen.
I got to meet baby Owen for the first time yesterday.  I hurt for him and his family SO bad because I know exactly, EXACTLY how they feel and what they are going through.  I brought them a bunch of supplies and diapers and other things.  I just want to do more.  They are such a beautiful family.  And I know that Owen is in good hands after meeting his amazing parents.  Please keep Owen and his parents in your prayers through these tough times.  They are coming to our house tomorrow to watch a bath and dressing change before they bring Owen home.  They need your prayers!  Thank you so much!

Here are some pictures from the recovery room and then later on today.... (and some from yesterday's walk to the snoball stand down the road!)

This is the "show us your muscles!" 

Cute, huh??

My first snoball!! 

Can you tell what color?!?

PawPaw Carey got to stroll!

First trip to Wal Mart with Grammy and MeMe (I know, the germiest place in the world!)

And I know I don't have one of those shopping cart covers- we don't get out much, okay :)

I did sanitize the cart though!!

The Fam...

Love, 

Tube Surgery

Hey guys.  We saw the ENT on Friday to check his ears.  Dr. Rodriquez said that there is fluid there.  It's not infected, but it's causing him pain because of the pressure.  She said we could either go ahead and put the tubes in or spend the next few years wondering if we should put them in or not.  So we made the decision and scheduled the tubes for this Wednesday.

Also, she looked down his trach and said that the little sore that he had there before from the longer trach that was in has gotten bigger and that's why we've been having some trouble with the trach.  He's having trouble getting air in because the sore is restricting his airway more.  So she started him back on the higher dose of steroids and tapering them down again.  Hoping that will help shrink down the sore.  I'm also giving him nebulized steroids to see if that will help as well.  We are going to go back tomorrow and let her check the sore again to see if it went down at all before we bring him into surgery.  She said he can't go in to surgery breathing like he was because the anesthesia team would have a heart attack!

But he's such a little trooper.  You would never know by the way he acts that he was struggling to breathe.  He's still all smiles.  But he is pulling at those ears so much that he's tearing up the sides of his face.  Hopefully the tubes will make a world of difference and he won't be pulling at those ears.  The surgery starts at 8.  We have to be at the hospital for 7.  So please say some extra prayers for him on Wednesday morning.  I will try and let you know how everything goes with his trach tomorrow after our doctor's appointment and let you know if the surgery is still going to happen for sure.

Also, he was supposed to have an appointment tomorrow to take his contact out and either leave it out if it's healed or switch it out with a new one.  Well, don't you dare think I'm going to put him through two traumatic events in one week... SO I called the eye doctor and she said that they could change it out (or check and see if it's healed) while he's under anesthesia so that it won't be as traumatic for him.  Killing two birds with one stone... I know, so smart :)

SO, please give offer up some extra prayers for the little man this week :) It's gonna be a rough one.

I'll let you know how things go!! Thanks again for all your love and support!
Here's some pics :)

Pick a toy, any toy...

Bye, Bye!!

Love, 

Past Week...

I know, I know... I am slacking.  Sorry.  We have been very busy and I've had some other things going on that has taken up all my time and energy :) Forgive me.

Tripp is doing well.  He absolutely 100% rotten and we are starting to see that more and more everyday.  BUT that's okay.  He deserves to be rotten.  He has started the "fake" cry (or in his sake, the "fake" noise from his trach).  It is so funny.  He doesn't even really want to sit in his chair anymore.  And if we clap our hands like we are going to pick him up, he immediately stops fussing and starts smiling so hard he shakes.  It's cute... but could possibly get old pretty fast if I have to carry him around all day.  I've been waiting almost 11 months for him to reach up like he wants me to hold him... and now we will see how long it stays cute before I go crazy.  Haha.

We have been trying to get out a little more. We went to LaCarreta with my parents and he was SO good.  He sat in the high chair the entire time and played like a big boy.  Except as soon as we got home, he was so dry in his trach that he was pretty close to turning blue again.  We got home just in time.  I love taking him out places, but he can't tolerate his HME, so he dries up so fast.  And also, the idea of him getting an infection somewhere makes me totally freaked out.  BUT, we also need some normalcy, too.

Tripp has been a little HAM lately.  He's doing so many new things everyday and getting to be so much more fun.  He loves his Jeep walker now and can push backwards in it.  He shakes his head "yes" and "no" and shrugs his shoulders to say "I don't know?"  Well, at least WE say that's what he means :).  He is moving his lips up and down like he wants to talk, but nothing comes out.  He is using his hands SO well and reaching and grabbing for everything in sight... including us.  He LOVES to be outside and has gotten in his swing a few times this past week.  Except we have to worry about the pollen here.  It has been SO bad this year.  I worry about his allergies but also something getting in his eyes and messing things up again.

His eyes have been doing really well.  He still has the contact in and we are planning to take it out next week and either replace it with another one or leave it out if everything is healed.  His ears have really been bothering him, though.  He rubs at them constantly and is beating up his face again... it just started looking better.  We are thinking about going ahead and letting the ENT put tubes in his ears.  He has fluid in his ears and pretty much always has... and he will be prone to getting the fluid until about 4-5 years old she said.  And it's not infected, so the antibiotics won't help.  She said it's probably just causing a lot of pressure, which could be causing the pain.  So I think I am going to see her again on Friday and let her check his ears again... and then we will decide from there.  I DON'T want him to have to get put under anesthesia again... but I also don't want him to be in pain anymore either.  And the good thing is that he won't have to be intubated because he already has the trach and they won't have to start and IV she said.  AND I'm pretty sure it will be an outpatient surgery so he won't have to stay in the hospital unless there are any complications.  So we will see...

Please say some special prayers for Jonah tonight.  He caught a virus and has stopped eating well.  He is losing weight and his blisters are looking worse because he's not taking in the nutrition he needs to grow and heal.  I talked to Patrice today and my heart breaks for her.  It's such a hard decision to have to make (a G-tube or not?).  Please pray that she and her husband Matt will have the strength to deal with whatever comes along... G-tube or not.  No one understands having this burden unless you've been there.  It's such a tough decision to make because you want to do what's best for your baby... but when and how do you know what is really best?  And how long do you wait?  Patrice, I love you girl.  You are such a wonderful Mommy and I know that whatever happens through all of this, you will do what you think is best for Jonah.  I'm here if you need me!

My "family" at North Oaks Rehab hospital (where I used to work) sent me a gorgeous basket filled with all kinds of great things.  And each person left me their own special little note.  It was SO sweet and made me miss all of them so so much.  Thank you, guys!!  You totally made my week!  I would not trade staying home with Tripp for one minute, but I miss all of you so much.  Thank you for thinking of us and for all of your prayers!!  Love you all!!

Here are some pics from the past week!

Love,