Friday, April 30, 2010

Questions page

Hey guys!  Just wanted to let you know that I changed my "Contact Me" page to "Your Questions."  That way I can try to post the answers to your questions one by one as they come to me on that page so I don't have to wait so long to answer them.  So if you ever have a question for me, just shoot me an e-mail and I will try my best to keep up with them.  Thanks again.

OH... and we went to the ZOO today!!!!  Post and pictures to come... going to try and rest with Tripp from the long day :) I will try and post them tonight or tomorrow.  But don't get too excited, it's just the back of his head with some animals in the background. Ha.

Jonah's surgery was a success and he has his brand new feeding tube!  Yay Jonah!! Bring on the calories :) Thanks to everyone for all of the prayers.  Check out Patrice's updates here.

Love,
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Thursday, April 29, 2010

Answering Your Questions.

First of all, I would like to say Thank You to everyone who sent a question.  It really means a lot that you care enough to take the time to "ask" about Tripp and our family.  I didn't mention any of your names because I know some people don't like that.  But thanks so much... and here it goes...

1.  Could you give a brief background on like...where you grew up, how you met your hubby, how long you've been married, etc?


I grew up in the small town of Ponchatoula, LA.  I lived there my whole life until I was married.  I LOVE Ponchatoula and hope to maybe be back there one day.  I was raised Catholic.  I have probably the greatest family ever (well I think so).  We are extremely close- from my immediate family, to 2nd and 3rd cousins.  I love it... I LOVE a big family.  I attended Ponchatoula High school and was a cheerleader for all 4 years.  I miss that so much!  Talk about the best times of your life... if I only would have realized that then:)  I then went to Southeastern LA University.  I started a job at the local Mexican restaurant as a hostess... and that is where I met my hubby.  He and his friends came in one day while I was working and when he left, he gave me a note that he had written on a napkin.  It went something like..."I think you are really beautiful and I am really shy (YEAH RIGHT) and I would love to get to know you... call me (and his number)"  So I called, and we have been together since (with a few break-ups here and there... you know how college goes. Ha).  We dated for about 2+ years and then were engaged for about 8 months before we married.  We married in August of 2008 and I found out I was 8 weeks pregnant in October.  Honeymoon baby?  I think SO!  But I wouldn't trade Tripp for the world.  In August Randy and I will make 2 years... it's been ROUGH and everyday is a new struggle.  But we are making it.  We hope every day is making us stronger.  


2.  My daughter is 1 week older then Tripp, and I know some of her dirty diapers are so bad I have to just take her and hose her off in the tub, how do you clean Tripp when you have dirty "Sticky" diapers without harming his skin?


Ugh, this is a tough one.  There is NO easy way to clean his dirty diapers.  Right now, his little bottom is SO raw.  He's not getting new blisters, but the sores that are already there are deep and raw and don't heal.  He is in so much pain when I clean his bottom. He uses cloth diapers and I load them down with aquaphor and desitin, so I think that helps loosen the poop off of his bottom... but I use very soft 3x3 gauze and squirt some water on them (I can't use wipes because they burn.. alcohol-free or not, they have all that other stuff in them).  I can "wipe" off the first layer of poop, then after that I "dab" and "pat" until it's all off.  Honestly, I just HAVE to wipe some to get it off... there is NO way I could just hose him off without changing all of his dressings.  Right now, we are already having to change some of his leg dressings with every single diaper change because they get urine/stool on them.  SO, I use a lot of water... and it takes a LOT longer to get all of it off.  


3.  I have a question for you. I don't know a lot about EB, but I do know that trauma or pressure to the skin can make it slough off. So, my question is this: how MUCH pressure? If you were to hold his hand (like crossing the street) when he's older would that damage him? If you were to hug him tightly? Catching him at the bottom of the slide? Going down the slide even? How about walking? Would that hurt the bottom of his feet? Or peddles on a bike? 


Before I answer this one, I just want you to know that EVERY single "EB baby" is different.  But I will tell you about TRIPP.  As far as his hands and feet, the only parts that have blisters are his nail beds.  His actual hands and feet are clear.  SO we are hoping that with time, this will still be the case.  Hopefully, walking or holding hands won't bother Tripp... but this isn't the case with all EB kids.  As far as other parts of his skin, yes.  All of those things... hugging too tight, the slide, would hurt his skin.  BUT that is what the wrapping is for.  Don't get me wrong.... sometimes EVEN with all the wrapping, he still gets blisters and I'm sure he always will.  But I wrap every single part of his body from his neck to his ankles.  I use something called Mepilex Transfer (it's a thin, foamy, safe-tac dressing).  I first put a thick layer of Aquaphor, Polysporin, and Baby Ecezma Cream on his skin, then a couple layers of Transfer, then I wrap in in 2 layers of soft roll gauze, and then pull the stockinette over it all.  And so far, this has worked out great for him.  He does not get new blisters very often.  We are holding him like a normal baby (most of the time) and hugging him.  As far as the slide and bike, it will all be a learning experience for us, too. We just take one day at a time and protect his skin as much as we can.  And if he gets new blisters from something that we've tried... we won't do it again.  It stinks, I know.  


4.  I was wondering if you planned to have any other children down the road, and if so, what were the odds of them also having EB? 


I DEFINITELY want more children.  I have always been a baby-loving person and always said that I wanted at least 4 kids- and Randy said the same.  Now, of course maybe that won't happen.  But we definitely want more kids.  Our odds of having another EB child is 25% (1 in 4).  SO, we will NOT be having any other children by just "trying."  When we decide that we want to have other children, our only option will be PGD (Pre-Implantation Genetic Diagnosis) and IVF (In-Vitro Fertilization).  Pretty much meaning that they will test the fertilized eggs for EB before they implant them.  I would NEVER want another child to have to experience this terrible, horrible disease. 


5.  I remember a while back when you guys were thinking of taking out all of his teeth because he was just causing too much damage with them. but in recent pictures he definitely still has all of them. So I was wondering why you decided against it? 


I am SO glad we decided not to take out his teeth... they are so precious and I love seeing them!  I changed my mind about taking them out the day before the surgery was scheduled.  I don't know why, I just had a bad feeling about it.  He had been (and still is) on steroids, so it keeps the swelling down from the sores in his mouth.  His mouth actually looks the best it's ever been.  He has about 18 teeth right now and still cutting the rest of his molars.  They do still make sores, but like I said, the steroids help with the swelling and the Ibuprofen helps with the teething pain (I hope).


6.  Are you and Tripp sleeping any better or is it still pretty interrupted all night long? 


The nights have been MUCH better, Thank GOD.  At one point I was actually getting up every 15 minutes.  Ever since he started having problems with his eyes, I moved his crib right next to my bed and took the side rail off so he is right next to me.  This has helped tremendously since I don't actually have to get up out of bed to suction.  His suctioning has gotten a lot better.  A good night probably consists of suctioning about 4-5 times... a bad night, a little more often.  But overall, he is sleeping very well other than if he is feeling bad (his eyes, or something else).  He doesn't have any type of bedtime, though.  We kind of just go to bed whenever.  I guess that's because I can't work and we don't have to be up at a certain time.  But overall, I feel much more rested.


7.  When Tripp got his trach, you said that one of the worst parts is that you couldn't hear him cry anymore. As much as parents complain about their babies crying, we all know those cries are sweet. So, I'm wondering if you got that little filter (? I don't really know what it's called) thing yet, so that you can hear his sounds??


It's called a Paci-Mur speaking valve.  And I have one, he just isn't able to use it yet.  The valve works by placing it over the trach and it will let him breathe IN but not OUT.  He has to breathe OUT through his mouth.  Either he can't understand the concept yet, or his airway is still too swollen for him to push air through.  When we think it's time and he's old enough, we will get speech therapy in and try to work on it, but right now when I try it, he has a LOT of trouble.  I think that is the worst part about the trach.  Like you said, most parents complain about their baby crying, but I have no idea what Tripp's cry even sounds like (even before the trach, it was very very hoarse) and I can't hear him ramble and laugh and scream.  It's really hard and I try not to think about it, but sometimes it just really gets to me.  I want so bad to hear him laugh and say "Ma Ma" and "Da Da" and I cannot WAIT until the day that he can. 


8.  I'm curious (based on one of the things that my 18 month old loves the most about his day) is Tripp ever able to be nakkey or do you go one dressing to another? My son loves the minutes leading up to a bath and dancing around the bathroom, is this an option for Tripp (not necessarily the dancing part, the nakkey part).


Naked = Trouble.  The only time Tripp is naked is when we take him from the tub and lay him on the table.  We try and let him lay there naked for a few minutes (because he LOVES it) but he is so active that it can cause too much damage to his skin.  And we definitely can NOT pick him up naked.  We scoop him onto the towel after bath with one hand under his head and one under the upper part of his bottom (above the sores).  Other than that, there is NO picking him up naked.... Big Big trouble.  Now, hopefully when he starts walking this can change (as long as his feet don't blister) maybe he will be able to just take a few laps around the house without bumping into anything to "air out."  I hope so!


9. You have mentioned maybe getting tripps teeth pulled out. Why?


As soon as Tripp started getting teeth, they started causing problems.  The teeth rub against his gums, inner lips, and tongue and cause horrible blisters.  Before we started him on steroids, he was in so much pain and the blisters were so big that he looked like he had 4 lips.  The steroids made everything look so much better, so we decided to change our minds.


10. Is the contact a permanent thing? Or are you just waiting on his eyes to heal?


Right now he has a contact in both eyes to heal the abrasions.  The doctors said they plan on changing the contacts out every 2 weeks, but checking first if the eyes are healed.  If they are healed, we will talk about leaving them out.  Personally, after watching the traumatizing way that they have to get them in, I wish there were contacts you could leave in forever and not have to worry about infection.  We go back to the doctor on May 4 to change them out or try to leave them out and see what happens.  Cross your fingers :)


11. I often see pictures of him taking a bath but he still has his bandages on, do they ever come all off??


Before we put him in the tub, we take off just about all of his dressings except his leg ones (this gives me a little more padding to pick him up and put him into the tub).  In the tub, all of the bandages come off.  Sometimes he will have a good bath with no fussing and other times, it is horrible and he is in so much pain. I am not sure why.  I use salt in the water to help with the sting (it makes a "saline" mix like your bodily fluids) and I also add some Baby Ecezma wash, which I find is also soothing.  We take him out of the tub very carefully and he gets to stay naked for just a few minutes before we bandage him back up!


Well, I think that was it.  Please feel free to e-mail me any more questions you have and I try and do a post and answer them when I get enough!  Thanks again for your concern!  The more education and the more awareness spread about EB, the BETTER!

Love, 

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Wednesday, April 28, 2010

Prayers for Jonah

Hey guys... as you know already (if you read Patrice's blog)  Jonah is due to have his feeding tube placed tomorrow.  Please join me in saying LOTS of extra prayers.... for Jonah, Matt and Patrice, the doctors, the nurses, the anesthesiologists, and anyone having to do with the surgery.  I know from lots of experience how hard it is to trust your baby with EB in the hands of anyone else.  It is terrifying.  Please pray that Matt and Patrice have the courage and the strength to get through this and be strong for Jonah.  We already know that Jonah is a tough little cookie and he will pull through anything.  I pray that everything goes EXTRA well and that Jonah and his Mommy and Daddy will get to have TONS of snuggle time instead of struggling to feed him.  I know Tripp's g-tube was a blessing... and I'm hoping that is the same case for Jonah.  WE LOVE YOU BUDDY!!  Be strong, you will be GREAT!
And we love you too, Patrice and Matt!  And will be thinking of you ALL day tomorrow!  Check out Patrice's blog and read the paper she wrote up for the doctors with the help of all the EB Mommies who have been in and out of the Operating Room.  It's awesome... I think EVERY hospital should have this list!!
Love,                   

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Monday, April 26, 2010

New blog, Mall trip, and Pics

So, do you LOVE my new blog?  I DO!  The nicest and most patient lady ever helped make it so cute!! Thank you, Jenifer, from the bottom of my heart.  You are so great and now I have a blog that fits me :)

Yesterday my mom, Tripp and I took a ride to the mall.  This was Tripp's first trip to the mall and he was so so good.  He just LOVED seeing so much going on.  And if we had a dollar for everyone who passed and thought we couldn't hear them anymore when they said, "Oh, did you see that baby??" then we would be filthy rich. Haha.  I don't mind, really... it just makes you think about how when he gets older and everyone is staring and pointing at him.  Right now he has no idea.  But I know I have to take one day at a time.  I hope that he will realize how very special he is instead of thinking "something's wrong with him."  I hope he will know that he is God's special angel on earth.  On the other hand, we met some really great people yesterday.  There was one lady that stopped us in the mall and said, "I know this baby!"  It ended up that she was the sister of someone that we know and she reads the blog.  It was really really nice to meet someone who follows the blog whom I've never met.  She was so very nice and hugged us and told me that she thought I was wonderful.  That's a feeling that I can't explain.  And it definitely made me tear up.  We also met some other women who were so so nice and so interested in "what was wrong."  I handed out his little cards a few times.  Those cards work out so nice.  
I just wish I could hand them to everyone we pass that stares... I don't mind the staring because I understand... but I just want everyone to KNOW what's wrong instead of assuming things.  
On a funnier note... there was one woman who stopped us in a complete panic.  She scared the "you know what" out of me.  

Woman: "Oh my God, did SHE throw up.. Look at HER honey, SHE threw up everywhere." 
I stopped strolling and looked at HIM.
Me: "No, HE'S fine, thanks." 
Woman: "Oh, ok.. it just looked like SHE threw up everywhere.  Poor baby."  

I think she saw his arm bandages and thought it was throw up... but O my Goodness!  Why does everyone think he looks like a girl!  Haha!  I just don't see it!  O well, I guess that means he's just beautiful.  
This is what he looked like yesterday... Check out the "car seat cover" that we used for a stroller cover!  It worked out GREAT.  We always have to cover the stroller in blankets to add padding, but now we can put this cover over it and it adds extra padding and cuteness, too :)  Did you check out Rachel's store where the cover came from yet?  If not, please do!  I had the wrong address in last time.  

.  




Ok, right... the DOG!  haha... there was a man in the mall with his dog in a doggie stroller!!  They were in the shoe store and as soon as we walked in, Tripp was infatuated with the dog.  The guy was so interested in Tripp and was like, "Could you please take a picture with the baby and my dog... He just loves childrens."  I could not stop laughing.  It was hilarious!!



This could be my favorite picture of all time. 



Papa's hat.



Tripp watching the trucks pave our new road!  
This was when his eye was bothering him so we couldn't go outside... He was dying. 






My whole fam was here hanging out outside yesterday... 
and that doesn't happen often.  
So I set the timer and got a pic of all of us
 (except Randy, but he's not big on pictures anyway. ha)











Love, 
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Friday, April 23, 2010

Owen, cart cover, and videos.

Last night we drove to Houma for baby Owen's wake services.  My sister stayed outside with Tripp while my mom and I went in.  This was the first time I had been to a wake for a baby and I was scared at what it would do to me (especially a baby with JEB). But I knew I had to be there for Katie and Allen. And to my surprise, it was okay. Of course it was sad and we cried, but there was also an "at peace" feeling about it.  Katie and Allen amazed me at their strength.   But like they said (and like I know ALL of us EB parents feel) they knew their baby was no longer in pain and that he was in a safe place.   Just like Leah, and all the other EB angels in heaven.   Meg, Leah's Mommy, wrote a beautiful post about this. Read it here.

We were BLESSED to have gotten to meet Owen, Katie and Allen. They are such kind, caring, and wonderful people. God puts certain people into your lives for a reason... and I feel like God did just that with this family... Because just as we had taught them "EB" things and how to bandage, etc, etc... They have shown us how lucky we are to have gotten to spend 11 months and counting with our son. You know, you always try and think of the good.. but it's hard when you have a sick child who is in pain all of the time. But God brought this family to us so that we would be grateful. I hope to God that we will remain in touch with this couple and I pray that with time they can come to peace with the whole situation. I can imagine you ever understand why God takes a child away from you... that has got to be the hardest thing to comprehend. All I can do is pray for them and be a support system for them. I just wish I could do more. Even though you've come to peace with things and you know your baby is pain-free, there still has to be the feeling of unending sadness. My heart breaks for them. I think about them all day long. Join me in praying for this couple and for their families. Thanks :)


Yesterday I received the nicest gift. A very kind lady named Beth sent me the sweetest email about a week ago after reading my blog. She said that she reads my blog and she saw Tripp's picture in the cart at WalMart. She said she was so glad to see Tripp out and about and she wanted to send me a shopping cart cover to make our trips out a little easier and more comfortable for us. I was touched.
Beth ordered the shopping cart cover for Tripp from another very kind lady named Rachel. Rachel has a store online with all kinds of precious items. She said she would be happy to make the cover and she also included extra batting at no additional charge to make it more comfortable for him. The cover is BEAUTIFUL. We didn't go shopping yet, but we did go to Olive Garden last night after the wake and got to use it in the high chair. It worked out great and all the extra padding made it extra comfy for him and even gave him a little play area in front to set his toys. See?


Sorry about the poor quality pic!  It was from my phone and it was dark in the restaurant!  I promise there will be more pics to come when we get out shopping!! 
Please visit Rachel's store and check out her shopping cart covers, along with all of her other baby products.  www.michaelmooodesign.etsy.com  This cover is top notch. It is very thick fabric and excellent quality! I loooove it!! She also included a seat belt so we wouldn't have to use the yucky one on the cart! 
Thank you Beth and Thank you Rachel. A simple gesture goes a very long way!!

Tripp's eye looks a lot better today and he is actually feeling a lot better. Besides him being spoiled rotten he has had a pretty good day. As of now, our next doctor's appointments are May 4. I stacked them all on one day again, which I like! We see the ENT to check his ears/trach, the dietician (finally), and the eye doctor. So please continue to pray that his eye stays well and that we can have some "normal" days again. Whatever that means! ha.
Here are some videos from last week.

video


video


Love,



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Wednesday, April 21, 2010

Baby Owen receives his wings...

I just wanted to let you guys know that baby Owen (read about him here) received his wings a few days ago.  I do not know all the details, but I wanted to ask for special prayers for Owen's Mommy and Daddy as they are going through this unimaginable time.  We got to spend an afternoon with them to help them prepare for what was ahead, however God had other plans for baby Owen.  He and his Mommy and Daddy will forever be in our hearts.  They are truly very special people.  Owen is now pain-free flying around in heaven with his beautiful wings.
 We love you, Owen.

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, 

Monday, April 19, 2010

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, 

Friday, April 16, 2010

"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 :)

Thursday, April 15, 2010

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, 


Wednesday, April 14, 2010

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, 

Monday, April 12, 2010

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,