Update

Hi guys.  Tripp has been doing great- almost so well that I don't want to post about it and mess anything up!  He has been a TOTAL ham these past few days.  His eye looks awesome and his trach is tolerable.  His poor raw butt- not so much.  (Thanks to everyone who commented with ideas- I've tried them all... but every time he pees, it soaks everything!)

Tripp is just dying to start moving around.  He is a lot more active these days- which of course causes more blisters.  A lot of the time, he only wants to be standing- which consists of someone holding his hands while his cute little legs are just shaking.  Walking is no where in his near future- BUT at least he LIKES to stand.  That's a step in the right direction. 

We took him back to the dermotologist on Tuesday and she said that his bloodwork showed that he does have the enzyme that he needs to be able to start this new drug (Dapsone).  If he didn't have the enzyme, then he would be at risk for anemia.  After he starts this new med, he will have to have bloodtests done every 4 weeks- ugh.  (It is NOT easy to get blood from an EB baby).  This medicine is an anti-inflammatory drug and it's purpose is to one day take the place of the steroid long term, because the steroids can cause so many problems if on them long term.  I have to say, part of my is scared to start something new while he's doing so well (hence why he hasn't started it yet).  But I'm thinking I will start him on Monday.  It's worth a try, I guess. 

I've had a lot on my plate (not Tripp related) lately and haven't really had the energy or the sanity (if that makes sense) to post.  I've just been enjoying my little angel, I guess.  Something that for a while was hard to do becuase he just never felt well enough.  I will try to post some pictures soon- I haven't had my camera, so I've had to take phone pics:)
Thanks again for all the love and support!  And thank you for the prayers for our family. 

Could you please say some extra special prayers for Daylon and Bella.  They are both on dialysis now.  But Daylon and his family need much love and support at this time- he had a seizure last night and was going in for emergency brain surgery through the night.  He had a bleed in his skull (outside of his brain) but the pressure could still cause him to seizure again.  My heart just breaks for these kids and their families. 

Love,

Update and Videos

Good Morning...  I am up at the usual 8:30, while my precious son sleeps on.  Maybe he'll wake up at 9:30, maybe 10:30, or sometimes even 11:00.  Mind you- he doesn't go to sleep until almost midnight and gets "broken" sleep every single night.  So, I'm sure he's just catching up.  But I am so thankful for this "morning time" to myself.... I can drink my coffee, get his medicines and feeding ready, catch up on my "EB baby blog reading," and sometimes (brace yourself) I even get to blog myself!!  (on a good morning).

Tripp has been doing well.  Not awesome... but not bad.  His eye is still very swollen and looks really bad in the mornings.  By evening time, he can open it a little better.  I do think it feels better, though.  He has been SO miserable in the mornings when he gets up.  I don't think it's his eye as much as it is all of his other sores.  It's like he is stiff as a board in the morning- like he is in extreme pain.  Everything just has to hurt, you know?  It takes him pretty much all afternoon to "wake up" and want to play.  Most of the morning just consists of rocking him in the rocking chair and snuggling close- NOT complaining.  

But we have GOT to get this child walking-  his poor butt/legs are so red and raw... and the other day--- O MY WORD.  We were undressing him for bath/dressing change and a piece of gauze was stuck to a sore (well, this happens every now and then, but nothing I can't get off with some aquaphor and a little cry) but THIS was horrific.  This piece of gauze was about a 1/4 inch deep into his wound.  I was sick.  The water didn't get it out, nor the aquaphor, nor the other 100 things we tried.  So I finally had to just load a piece of gauze with a TON of aquaphor and pinch it off.  It was heart wrenching.  I DESPISE when this happens.  But, the little ANGEL he is, was fine after that.  I have brainstormed and brainstormed about how to cover his butt/thighs better, but just can't think of anything better than what I'm doing.  He just gets pee all over his inner-thigh dressings.  I change the mepilex/stockinette each diaper change in that area-  but he's just miserable- it must burn his little sores so bad when he pee-pees.

EB mommies and daddies- any suggestions, I'd appreciate :) Thanks. 

Anyway, no extra special news to report... BUT no really bad news either.  So that is good:) Thanks for the prayers. 

(And yes, I started this blog at 8:30, and finishing now... 12:40.  Tripp requires my full attention!!)

Who's a Rotten Boy??

     

Dancing to Elmo

   

"Mom, who do I look at??"

Tripp and Mommy

Muscles on the 4-wheeler.... the cutest. 

His 10 seconds of outside for the week!!

Love,

Happy FIRST Birthday, Daylon!!

Today is Daylon's FIRST Birthday.  He, like Tripp, has Junctional EB... and was also told he was not supposed to see his first birthday.  Daylon is currently in Minnesota.  He is the FIRST Junctional EB patient that is going through the BMT (Bone Marrow Transplant).  He is in the PICU right now on a ventilator due to the harsh effects of the chemotherapy.  I was literally in TEARS reading Daylon's blog this morning, because:
1.) Everything his Mommy said explains exactly how I feel about Tripp.  It just made me realize how much you just can't understand what an EB parent goes through unless you're living it.
2.) I remember being SO upset at Tripp's first birthday because he couldn't open his eyes- and here is Daylon, in PICU, fighting for his life and celebrating his first birthday on a ventilator.  Yet, his parents and his family are thankful, optimistic and full of faith.  What a blessing these children are.
3.) Daylon's story holds such a special place in my heart and hits so close to home.  He's going through this horrific fight, not only for himself but for Tripp and the other Junctional babies out there.

PLEASE read about Daylon here.  And please send his parents and his beautiful family (he has FOUR brothers and sisters) your thoughts and prayers!  WE LOVE YOU DAYLON!

Dear Daylon, 

Hey buddy.  I know you are going through a rough time right now, but I just wanted to wish you A VERY HAPPY BIRTHDAY!  You made it, man.  My mommy always tells me that I am tough, but you are sure showing me up :)  You are one strong boy.  Mommy says to tell you THANK YOU... she says you don't know it yet, but you are doing such a brave thing for all of us other EB babies out here.  You are my HERO.  Mommy says that one day when we both start feeling better, that we are going to meet.  I can't wait to meet you and give you a big hug for all of this hard work you are doing.  She did say, though, that I have to share my toys- I'm not too good at that... but that's something Mommy and I will work on :).  You keep being strong, buddy... and I'm going to keep saying extra prayers for you to feel better soon.  I just know you're going to be alright-- us EB kids are the toughest around.  Please know that you have SO many people who love you and who are dancing for joy that you have reached this VERY special milestone. 

Lots of Love... Your friend, 

Tripp

I also want to let you guys know about Beautiful Bella... She is also in Minnesota going through the BMT.  She has Recessive Dystrophic EB and is also in PICU on a ventilator.  She and Daylon are just a few doors down from each other.  Bella also has such a beautiful family.  Bella's dad writes on their blog... please read their journey here.  He has such a great sense of humor and brings out the positives in every situation.  Bella and Daylon are the most recent transplant babies.  Their stories help to keep me grounded.  Both of their bone marrow came from sibling donors- Ali and Caleb.  I love these kids and their families... and I've never met them.  I know you'll fall in love, too.  

Also, I wanted to give everyone a list of the other EB children that are going through this extremely difficult time (the Bone Marrow Transplants).   

Hannah

McKenzie

Keric

Rafi

Sam

Please keep these children in your prayers... as they are fighting for the cure. 

Tripp had a really good day yesterday.  His eye is still very swollen... and I can't really see in it, but I thought that piece of skin was still there in the corner.  I don't know.  But anyway, he was smiling and playing yesterday with practically one eye.  Yes, he is an angel baby.  I talked with Zainab's daddy (the other Junctional child in Canada who had the AMT) and he said that it took the swelling a few days to go down and then her eye was as good as new!  If we can only be that lucky!  Trach-wise, he has been doing pretty well... I've gotta give it to ya, God... yes, Tripp has issues with EVERY SINGLE part of his body, but at least You are giving us one issue at a time.  Thank you ;)  If Tripp heard me say that, though, he'd probably say... "MOM, are you NUTS?"  But it's true... I guess I'm trying to say that it could always be worse.  I am thankful that he's able to give me those beautiful smiles everyday.  Man, I love this kid. 

Love,

Update and Thanks.

Hey guys... First I want to say thank you SO MUCH for all of the prayers, love, and support today.  Seriously, we are BLESSED to have so many people in our lives that care about our son and our family.

We sat in Pre-op for literally about 3 hours.  Tripp had some versed and it made him HILARIOUS.  O my goodness.  It took about 5 minutes to kick in and then he started looking at us with those "glassy" eyes and smiling so big.  He could not stop dancing and shaking his body around.  He was showing his "muscles," which is so hilarious.  He pretty much showed off all his tricks to the docs and nurses.  I need some of that happy drug to give him in the morning when he's so grumpy:)  It started wearing off a little by the time they took him, but he was so ready to get out of that little room, that he would have gone with anyone.  So the anesthesiologist, Dr. Corsino (CANNOT say enough wonderful wonderful things about him) took him back with him into the OR.

So I only had to take 2 nerve pills today (only supposed to take one, but I'm still alive, so that's good).  I think they really helped, though, because I pretty much maintained my sanity the whole day.  Go, me!

So the actual surgery took about an hour and then it took him about an hour and a half to wake up (move around) in the recovery room.  He looked better than I thought he would.  His eye was really swollen, but that was expected.  Dr. Eustis said that it was a little more challenging than he thought... he said Tripp had a really big symblepharon on the corner of the eye (where the lid was fusing to the eyeball).  He said that he didn't expect that at all and it threw him for a loop ----um---- with all do respect------- I literally told him about 4 times in the doctor's office that I thought he had a symblepharon- and I even used that word because I had done my research.  BUT ANYWAY-- I kinda tried to tell him that... I'm just saying.
Anyway, the important part is that he said he was able to clip that part off so that his lid and eye weren't fused and he was able to smooth down the granules on his lid and sew the amniotic membrane to his lid. (OH, and they just did the one eye, his right one.) He said that this tissue coming down (the symblepharon) in his right eye was causing the contact to be misplaced, which was causing more pain, also.  So after he clipped it off, he took the contact out of that eye, cleaned it, and put it back in.  He said the left eye looked good, that he just had a little symblepharon under the eyeball, which I showed to him in the Pre-op room because I discovered it when Tripp started rolling his eyes.   But he didn't do anything to the left eye.  I guess that's okay, though the contact has been in that eye for about 2 months now.  Hope it doesn't get infected.  But I'd rather we see what happens with this eye before we go messing with the other one already.

OH, so I had to restrain my poor little man's arms tonight.  It's really breaking my heart.  Like he doesn't have enough issues- we have to restrain his arms (which he loves to hold above his head when he sleeps-and slip in sneakily a quick eye rub:)  I took a strip of his stockinette (Tubifast) and put it under his back and then cut a slit on each side and tied his arms loosely to each end.  So he can still move them, he just can't reach his eyes.  It's for his own good, I know... but it's still cruel.  Anyway, our friend, Bonnie, gave us a good idea-  put a bigger size shirt on him and just don't pull his arms through.  So I may try that tomorrow night.  We will see how tonight goes and what tomorrow will bring.

I will try to update tomorrow and let you know how the little man is doing.  Hopefully, this will be the temporary fix we've been praying for and eventually give him some relief.  I know what he's thinking though... "What the heck did you guys do to me now??"  Sorry little buddy... Mommy is just trying to help, I promise.

Before I say goodnight, I want to say that if it weren't for the amazing doctors and staff at Ochsner... Tripp would not be where he is today.  Each and every doc has gone above and beyond my expectations.... Dr. Eustis (eyes) has been more than patient with me and so kind to want to attempt this surgery that he has never done to help our son.  Dr. Defusco (Tripp's pediatrician) has been my guardian angel the past few months- she has made so many phone calls to so many people trying to get the best care possible for Tripp. And not to mention- worries about MY sanity, too.  Dr. Serrano (Tripp's GI doc) called today and said she called the doctors in Cincinnati to get their opinions on what to be doing about all the "feeding" and "bowel" issues we've been having.  And Mama Kimsey (Dr. Rodriguez- his ENT) - don't even get me started on her- A-MAZE-ING!  She has far exceeded any expectations I've had.  She even popped in to see him before his surgery today.  It's just such a wonderful team here.  I love love love Tripp's doctors- all of them.  Thank You GOD... for blessing us with caring, intelligent doctors to love and treat my son.  We have so much to be thankful for.

Ok, this was supposed to be short, because I am T-i-r-e-d.... and Tripp is sleeping so I need to get my rest before he turns on "beast mode."  Love you guys... Thanks again and goodnight.

Love,

Prayers for Surgery

Tripp's surgery is going to be tomorrow.  Our arrival time is 12 noon, so I'm guessing they will be squeezing him in at about 1:00ish.  OK... so here's the deal:
1.) I found out today by talking to the EB nurse in Cincinnati, Geri Kelly, WHOM I ADORE (she's maintained my sanity for a year- thank you, Geri:) that the only little girl that she knows of who's had this eye surgery done is from Canada.  Comforting, yes I know... BUT this little girl (Zainab) had this AMT (Amniotic Membrane Transplant) done around March and is doing well from what I hear.  SO that is great news to me.  I plan to email her father shortly and find out anything else that I need to know :)
2.) Dr. Eustis, Tripp's opthalmologist, has never done this surgery before, nor has the corneal specialist at Ochsner, Dr. Shaw, NOR has the doctor that he called in Cincinnati.  But they've all HEARD that it is supposed to do great things :)  Don't get me wrong- he's an EYE doctor, so he's done similar things- just not this exact procedure.  I have complete trust in Dr Eustis (after just talking to him on the phone for about 20 minutes).  What else can I do but place my trust in him and in God that everything will be okay?  So that is what I am doing.  So maybe none of these doctors have done this- but how great will it be if it helps Tripp, and then in return can help any other EB child out there.

Ok so today I was having a nervous breakdown because Dr. Eustis and I hadn't really talked THOROUGHLY about exactly what is going to happen tomorrow.  We had talked about this amniotic membrane each time I had brought Tripp to the doctor, but this last visit we had just decided that it's the last option and it needs to be done.  So we scheduled it without really going into A LOT of detail what it was going to entail.  That is why I called Geri, the EB nurse, today to see if she could tell me a little more about it.  Well Geri had heard of it and that it's done great things, but the only case she was familiar with was the little girl in Canada.  Anyway- so me, Nervous Nelly, put in 2 calls into Dr. Eustis, making SURE he would call back because I did not want the first time that we talked about this surgery thoroughly to be in the Pre-op room.  He called back and explained things to me... I'll try to explain it to you the best I can:

He will be first exfoliating the tissue (blister) underneath is eyelid to the point that's it's bleeding.  He will then take the amniotic membrane and stitch it in 4 different spots to secure it to the inner lid.  The stitches will be dissolvable and he says they will not cause friction on his eyeball.  This amniotic membrane should dissolve itself in about 4-5 days, hopefully causing Tripp's eye to regenerate it's own smooth surface again.  He will also trim/snip (I hate that word) off that extra piece of skin that is fusing down is the corner of Tripp's right eye.  So that will hopefully be gone.  From what Dr. Eustis says, this amniotic membrane stuff is used for a TON of things and usually has very good results.  I also explained to him how nervous I am about the actual "manipulation" of his eye/eyelid.  He reassured me that he will take every precaution possible and will do the least bit of manipulation possible to his lid.  He even said if he had to "lift" the lid and work underneath it, instead of "flipping" it and inverting it that he would do that.

Our favorite anesthesiologist will be working his case tomorrow.  That makes me feel a whole lot better.  His name is Dr. Corsino, and
1.) he has kids (you can tell)
2.) he has been with Tripp through 3 surgeries already
3.) he knows EXACTLY what he can and can't do when it comes to tape, touching, etc.
I wish some of these doctors could babysit :)  Anyway, they will be doing both eyes and also drawing blood work for a new drug that they want to start in place of the steroid.  I was going to ask if I could go back into the OR with him, but honestly I just don't think it's a good idea.  I think it will cause more stress on me and more stress on the doctors.  I feel that I have made myself clear (and will have the chance to make myself even more clear in pre-op) and I really feel VERY comfortable with Tripp in the hands of these doctors.  I feel like they really do care about him.  How fortunate are we that we have doctors here in New Orleans that are WILLING to do a procedure that they've never done before?  That means that we don't have to travel across the country to get something like this done.  Trust me, I am VERY grateful, and I place complete trust in these excellent doctors.

So, please, keep my little trooper in your prayers tomorrow.  And also, say an extra prayer for the doctors, that they will know exactly the right things to do.  As of now, we are planning to do both eyes.  That could change depending on if Dr. Eustis looks at the other lid and thinks that it looks smooth enough to leave alone.  He said we will talk about that tomorrow.  So we will play it by ear.  I will try to update you guys either by Facebook or Twitter tomorrow while in the waiting room.  Thank you from the bottom of my heart for the love and support all of you have shown us.  It's gotten us through "yesterday" and it will be what gets us through tomorrow.  Love all of you :)

Love,

Surgery Date.

Just wanted to let you guys know that Tripp's surgery (that I told you about in the previous post) is scheduled for this Wednesday, July 7th!  Thank you for your prayers that they could get squeeze him in on that date, they worked!!  I am SO glad because the last couple of days, he has really been struggling with his eyes.  They are so red and watery... he barley wants to open them.  Poor little man.

Once again, I have tried to catch him doing ANY of his tricks on video, but he immediately shuts it off when I pull out the phone to video him.  I'll have to catch him secretly (which is hard when he wants you right there in his face).  I'll keep trying.

So aside from all of his issues and the fact that he is always in pain and has every right to be grumpy whenever he wants-- I have decided that he is NOT a morning person.  It takes him until about 7-8:00 at night to really "wake up" and want to play.  He is SUCH a night owl- and I'm SO not.  Ugh.  O well, i enjoy when he's happy and playful, no matter what time it is!

So please keep Tripp in your prayers on Wednesday.  I don't know yet what time it will be- they said probably late morning or early afternoon.  I will let you know when I do.  The surgery will be outpatient at Ochsner Hospital in Metairie.  As soon as I know anymore details, I will post them!  Thank you so much for all of your love and support.... I couldn't do it without you guys! :)

Love,

Update

First of all, I want to send out a big "thank you" to everyone who has contacted me in some way or another to see if we are alright! :) It's been awhile, yes... once again.  Honestly, here's my excuse: I've not only been in a general "funk" but I'm kind of in an "EB" funk right now.  I'm just so frustrated with this horrible, stupid, unfair disease and frankly... I am trying everything I can to keep my mind off of it (which is impossible, by the way).  But I know you guys are worried about Tripp, so I wanted to let you know what's been going on.

Last you heard, he had gone to the eye doctor and had one of his contacts changed out.  Well, since then that same eye has been red, swollen, and watering constantly.  So Tuesday of this week, we took him back to the eye doctor- this time KNOWING that no one was touching him unless he was under anesthesia.  I made that very clear.  So the doctor and I decided that the best option for him right now is to try the amniotic membrane.  Ok, I will try to explain what's happening and how this will work.

Tripp's eyes are just like his skin.  When his eyes itch and he rubs them, he causes a blister on his inner eyelid.  The blister becomes a rough surface and takes a very long time to heal (if it even heals at all) just like the rest of his skin.  So the blister then rubs on the eyeball every time he blinks or rubs his eyes.  Well the contacts cover the iris (the brown part of his eye) but it doesn't cover the white part (sclera).  So the contacts help him to be able to see and to actually be able to OPEN his eyes, but when the blister rubs on the white part of his eyeball, it is still painful and it can still cause a corneal abrasion.  Which can also lead to eye infections and other things.

So the next step (and probably the ONLY other solution)... which is also temporary, is sewing an amniotic membrane to the inside of his eyelid so that it smoothes it out and it won't cause an abrasion on the cornea.  They get this "amniotic membrane" from random moms who donate their amniotic sacs (PLEASE donate :) ... I didn't, but sure will with my next one).  They freeze the membranes and use them for all sorts of things (I'm finding out).  Supposedly it has done well in other EB children, though they don't know how long it will last- weeks, months...??  So it may be something that we have to do often, but if it helps even for a week... it will be worth it.  And honestly, it may seem kind of weird, but I don't care WHO this "membrane" comes from--- if it gives Tripp ANY little bit of relief, it could come from Bill Clinton's dog's amniotic sac, I don't care!!

The surgery is scheduled for Wednesday, July 28th right now.  But I kinda begged for it to "somehow" get pushed up.  We went into the surgery Coordinator's office to schedule the surgery and I think the longer we stayed in there and she got to see Tripp, the more she tried to squeeze us in earlier!  She said that he is already "over"booked, but she was going to do her best to see if she could get him two surgery rooms so that she could squeeze us in on July 7th.  That would be awesome!!  He's had so much trouble with his eyes lately, that I am so excited to give this a try.  I'm praying that it will be (if anything) just a temporary fix.  At least we will know that we have an option when his eyes get really bad like right now.  I was only going to get them to do one eye, but yesterday he woke up with his GOOD eye swollen shut and didn't open it until 6pm last night.  He must have rubbed the blister through the night.  So while he's under anesthesia (which I'm not very excited about), I'm definitely going to get them to do both eyes.  Poor man cannot even get two good days in a row.  It's always something!!

Ok, so now for his skin... it has pretty much stayed the same all over his body.  Not healing, but really not looking any worse.  The heat is being really hard on him though.  He is getting a few new ones here and there, more than in the winter.  And he gets little "heat rashes," too that seem to itch him a lot.  His worst areas right now are the backs of his thighs, his butt, and the sides of his little scrotum.  Not only is his poor little bottom just HOT all the time, but all he wants is for us to hold him.  And he's not walking or crawling (and honestly has no interest in learning) so that means he's constantly getting weight/pressure on those areas.  Not to mention the pee/poop that's always there!!  It's so sad because no matter how much I lube him down with aquaphor/desitin/whatever sometimes things get moved and get stuck.  It's the saddest and most painful thing when I have to get a sore "unstuck" from his bandages.  This child must have to highest pain tolerance in the world.  I swear he can't be human- I know he's an angel on Earth.

He is SO good- and never ever ever ceases to AMAZE me.  What a strong boy he is.  God, if you are reading this... I'm not sure what I did to deserve one of your angels, but THANK YOU.  He has changed my life.  I am so grateful.

There is probably so much I'm forgetting to tell you, but it's been so long that I'm just trying to touch on the big-stuff :)  Tripp pretty much can "mimic" anything we do:

He waves "bye-bye", he rolls his eyes, shakes his head yes and no, he "swims" (which is TOO precious, by the way... he moves his arms back and forth like he's swimming), he does the horsey sound (clicking his tongue), he claps his hands, nods his head and stomps his feet to the "If your happy and you know it" song.  Anytime you say, "dance", he immediately starts shaking his head along with the rest of his body.  He also knows the meaning to "clap your feet", "shake your butt", "wiggle your toes." If you say, "Who's a rotten boy?" He lifts one of his arms up as if he's saying "ME, ME."  Really, I'm not kidding, he pretty much can perform anything we tell him to if you show him how to do it once.  He's hilarious. It's amazing, actually.  I can't believe how smart he is.  Maybe because we are in his face all day!!  He LOVES books and wants to turn the pages BY HIMSELF... and instead of using HIS finger to point to the pictures, he will grab OUR hand and use it to point to the pictures!  Talk about ROTTEN!  And STILL with his balls and his eggs, he ONLY wants the red and green, or the pink and green.  And if you try to give him another color, he shakes his head "No, No."  I am on a mission to get this all on video, but it's like he KNOWS I want him to perform.

Please keep little man in your prayers and I will let you know the "set" date of his surgery.

My little brainiac's first trip to Books-a-Million.

My little sleeping monkey.

Love,