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!




  1. Awesome post, Courtney. You are so great about educating. Love you! :)

  2. That was great, thank you Courtney!

    Glad little Tripp is doing well. :)

  3. Courtney! You are amazing! All of you are! Its really nice to read that you are so willing to share the "Life of EB" with the rest of us! Education is such a vital part of funding a cure!! Good luck and lots of love to you all!

  4. Courtney, Awesome post. You amaze me in all that you do. You are truly one of a kind. GO GIRL !!! My prayers & love are with each of you.

  5. Thanks so much for sharing your information about EB with us. God bless you, your husband, and your wonderful little man!

  6. Yes thank you so much for sharing! Until about 9mos ago, when I found Jonahs blog I had NO idea that something like this existed. I mean, Ive seen pictures of the "harloquin baby" (Im totally spelling that wrong!) but didnt know that people actually live like this. I have fallen in love with Tripp (and Jonah too!!) and very much look forward to reading more about you and your family and seeing more pics of Tripp. He is too darn cute!! Seriously! :)

  7. Thank you so much for answering those questions that was so informative. I never thought about asking them but found them very educational. I think after reading this most mom's take for granted how easy we have it to change our babies diapers. You really have to take your time to make sure little Tripp doesn't get hurt. I think you as well as other EB moms out there are so wonderful to take such good care of your babies.

  8. Thanks for taking the time in your busy day to answer questions for US! You are too sweet! I learned a lot!

  9. I have a question I just thought about... you said you can't wait to hear him say Mama. So will his trach be removed when he is older and can breath better?

  10. I just want to stay thank you for educating us more on EB. I know it's hard on you and your hubby, but you're the greatest, I have all the respect in the world for you. I pray every nite for you guys, for the little man to be pain-free. I love you guys!

  11. Thanks so much for taking the time to share more about yourself! (((hugs)))!!!

  12. Thank you so much for sharing this story. Reading your latest post caused me to weep and weep. What a strong, spiritual and beautiful mother you are. Your son's presence on this earth is truly a blessing.