Your Questions

Please e-mail any questions you may have about Tripp or his disease to
I will try my very best to answer your questions through this page as best as I can.  
Thanks so much!

Do you se BMT as a future treatment option for Tripp? Why or why not? 
This is a tough one.  But if I'm going to be completely honest, here are my thoughts on that-  I don't think we will be attempting the Bone Marrow Transplant unless:
1.  We are desperate and at the point where it's either know we are going to lose him or try and save his life by putting him through such a horrendous procedure.
2.  We see results and progress in other children who are having the BMT done.
And by #2, I mean that I want to know that we are going to put him through such a rough time knowing that it has changed other lives for the better (if that makes sense.) By all means-  I totally totally admire these families who are going through this to try and save their child's lives and give them the quality of life that they deserve-  but I just can't see myself putting Tripp through that after seeing and reading about what these babies are going through- unless it was our only choice.  Maybe it's for my own selfish reasons of not having to watch my child in any more pain than he already is, I don't know.  But I know it will get worse before it gets better- I'm just scared of the worst if it can be avoided right now.  I hope that makes sense.  But don't get me wrong-  maybe my views will change as he gets a little bit older and can learn to communicate with us and tell us what is wrong.  I pray to God that there are great things that come from these transplants and that the doctors will keep working and researching for a cure for this horrible disease.

Will it ever go away? And are the doctors still telling you it could be terminal? In Tripp's case, not just in general.

There is no cure for EB and it will never just "go away."  Right now, there are cases of other children that are having Bone Marrow Transplants done in hope of a "cure."  But it has yet to be called a "cure."  

The specialist told us when he was 2 months old that he would not live to be a year... and here he is at almost 15 months.  He has an 87% mortality rate within the first years of life.  One of the main causes of death at this point is infection.  We try to be overly-cautious about hand washing and germs... and he can't go out almost at all because of the heat.  But every single baby is different.  There are babies with JEB that have lived days and some that have lived years- we just have to live each day as if there were no tomorrow :).  

You said you can't wait to hear him say Mama.  So will his trach be removed when he is older and can breathe better?
Well, we hope and pray that will be the case, but realistically I just don't know.  That will always be a HUGE decision that will be weighing on us.  If Tripp's airway does heal and the swelling goes down and the doctors think that the trach could come out... how do you even make that decision?  Because from our experience with EB... there is always something coming next.  Even if he show 15 clear bronchoscopes (meaning everything looks good).  We could take it out and then the 16th one could be swollen and horrible again... and then what? There would be major problems trying to get it back in.  So we will take one day at a time, and what will probably happen in the future if his airway does heal and he can use it again, then you can "cap" the trach off and it just stays there "in case."  That would probably be our best option.  But until then, there is a little device that you can put on the end of the trach called a Paci-Mur valve... I talked about it in one of my other questions.  It lets him breathe IN and not OUT, so he would have to push air out through his mouth.  So I am hoping one day he can learn to use that and be able to speak.... or sometimes kids will even learn how to push the air over the trach and speak with it in... we will see.

How did Tripp get his name? 
Tripp's legal name is Randal Michael Roth III.  So since he is the third, we gave him the nickname Tripp.  We did not find out the sex of our baby before-hand (which I highly recommend doing!!) and we could NOT agree on names.  So we decided that I would choose the girl name and he could choose the boy name.  But I liked Tripp, too :)

Did you know before he was born that he was gonna be an EB baby?  
Oh NO. There is no way to test for EB with an amniocentesis unless you know EXACTLY what you are testing for (and who in the world would ever just randomly test for EB?  No one even has a clue what it is)  After we had the genetic testing done on Tripp and found out he had the Junctional type, we knew we had a 1 in 4 chance of having another baby with EB.  And that is NOT a risk you take.  I would never selfishly risk my child's life knowing that it had a 25% chance of also having this disease.  If I had known from the beginning though, it would have only caused so much stress on my pregnancy... looking at pictures and reading all the horrible things.  God knew what he was doing.

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.  

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 (ointment choice of the week:) 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 (well, rocking 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.  

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).

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.

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.  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.  His airway is swollen shut and fused together so he is unable to push air through.  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 I cannot WAIT until the day that he can- whether it's a miracle or I hear "Ma Ma" in heaven:). 

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!

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.

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 and an oatmeal bath, 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!