Our life lately...

Hi there!  Yes, it's been awhile.  I have been pretty much non-stop around here lately.  The blending food stuff is going great.... very time consuming, but WELL worth it.  I think Tripp has gained close to about a pound since I started.  And overall I think his stomach is feeling a lot better.  

Oh, I got my VITAMIX!!  I called the company and got a letter of medical necessity faxed from Tripp's pediatrician (Thanks, Patrice:) and got a very substantial discount :) Plus free overnight shipping.  And, that company has GREAT customer service, by the way.  And that's something you get very aware of after spending most of your day/life on the phone with doctors offices, insurance companies, supply companies, pharmacies... you get the point.  Anyway, it was refreshing to get some good help.  And I'm loving the Vitamix.  I can just throw in straight avacodos with some olive oil and a little whipping cream, or blend peanut butter with raisins and bananas:)  And then put it in ice trays and defrost what I need when he needs to eat.  For breakfast, though, every morning he gets a scrambled egg, some yobaby yogurt, a little 100% fruit juice/puree, some flax seed oil, and a few other special ingredients.  He is finally getting the calories and the protein he needs (I think:) and I'm feeling really good about it.  NO MORE SUGAR MALT!! ever!!

I also got some Duocal (a water-soluble calorie supplement) and another protein supplement called Pro-Stat 64 (again- Thank you Patrice... she's got one great nutritionist!).  So I'm hoping these supplements can help with some of his wound healing as well... but in EB-- you never know.  Sometimes those sores just won't heal.  Like I said, he still has sores from when he was a few months old that look exactly the same.  

His wound cultures came back with pseudomonas and another "water/soil" bug.  Dr. Defusco said the name, but it was real long.  She didn't act like it was really bad or that she was really surprised, but we both agreed that we should try and get him through at least a round of antibiotics.  The problem in the past has been the diarrhea.  He would start with MASSIVE diarrhea every 5 minutes... like water.  Well this time she started him on Cipro for 10 days.  And I'm not sure if it is the new feedings, or the fact that I bought a really expensive probiotic from the local whole health market... but he's doing great so far.  His stools are still loose (I know you wanted to know that), but no where near what they have been on antibiotics in the past... so hopefully we can get through a whole round of antibiotics this time!!

I say this with as much love as possible, but Tripp is officially a little rotten brat.  Ha.  We have definitely created a monster.  But, you know it's kind of hard to correct your child when 1.) he can't talk to express himself  2.) he has sores all over his body  3.) he's so darn, stinkin' cute.  I've just learned to accept the fact that I am going to have that rotten, bossy, fit-throwing little child that I said I would never have :)

No, really.  It's bad.  He knows exactly what he wants, when he wants it, where he wants it, and who he wants it with.  And he can't talk... but he can tell you exactly what he feels with his hands and his facial expressions.  He's now practically "hitting" you out of the way if you get in his "personal space."  It's secretly so cute, though... and can you blame him??  

But he does have his sweet moments, too... when he's tired:)  And he's finally starting to love his Mommy... which took a while.  He's signing "more" like a crazy man... especially when he wants us to ride him around in his car.  He can ride that car for seriously like hours around the house.  Grammy taught him how to roar like a lion:)  It's cute... If you say, "Don't scare me with that lion!", he opens his mouth and makes a little noise through his trach.  And thinks it's so funny.  He pretty much does something new every day... And lately, we've been resorting to buying him "music cards" because he has almost every toy on the shelf at Target and WalMart (And seriously, he has every single toy at CVS and Walgreens... I go there the most:) But you should see him dance to his music cards... he's hilarious.  He loves any type of music... whether you're singing to him or it's playing on the radio or TV.  

He is such a joy to be around.  And you know... I've spent a lot of time this year (secretly) feeling sorry for myself for not being able to leave the house or go out to dinner, or pretty much do anything but go to Target... but the more I think about it--- What is better than getting to spend all day with the best baby in the world?  Seriously... I was looking at him sleep last night and thinking that there was no place in the entire world that I would have rather been than right there with him.  I'm not the one missing out on things.  I'm the lucky one.  I'm the Mommy to one of God's angels.  What else was I put on this Earth to do?  Nothing.  

I love you guys.  Have a great week :)

He needs Mickey up close and personal.

The cutest butt you'll ever see.

Tripp's cousin Elizabeth.  I know- BE-U-TIFUL!!

I didn't think to get the camera out until he was really tired... so this is what I got!

On his knees!

Helping Mommy make his food... stove is not on, don't worry.

This was one of his best baths... dancing uncontrollably to Elmo.

This is HILARIOUS.  One of my favs.

Love,

Randomness...

It's been a busy week.  Tripp hasn't been the greatest he's ever been- just still junky with a constant runny nose and on and off low-grade temps.  We went to Dr. Defusco (pediatrician) on Wednesday.  He is really due his 15 mo. shots, but instead she did some wound cultures on some of his draining sores and we talked about nutrition- thank God.  So she pretty much said that he is "failure to thrive."  Which means he's not growing like he should be.  Which I knew- but still isn't easy to hear. 

 My frustration is- why hasn't anyone been more concerned about this until now??  It's not really Dr. Defusco's job, you know.  I've been trying to find a decent nutritionist for months now... and no one is interested in taking the time (yes, I admit- it takes A LOT of time).  But that's their job, right?  Well up until now I've been giving him the Pediasure because the dietician SWORE he was getting all the nutrition he needed with it.  Well, yeah sure... a NORMAL child might be getting all the nutrition he needs, but once again- Tripp is NOT NORMAL.  

Why haven't I had the chance to deal with it and do this myself before now??  Well, because I've pretty much been focused on keeping him alive- you know... trach issues, fever, wounds, corneal abrasions, contact changes, eye surgery, preventing infection... stuff like that.  So, sure the easy way was to trust the dietician and shove 5 meals of 120 calorie-vanilla MALT down his feeding tube.  Well, I'm done with that.  I took it upon myself to start blending his food.  Dr. Defusco totally agreed with this.  We sat down and realized that he was only getting about 720 calories a day and not nearly enough protein.  First of all, he uses most of his calories to breathe and TRY to heal... and the little bit of protein he's getting is surely not enough to grow and heal (not saying his sores would even heal with more protein, but at least they would have a chance).  It's going to take me a while to get this together and to be comfortable with it- but what I realized is that I can't hurt him in any way by doing this-  if anything he will be getting more calories than before.  

So I called Patrice, Jonah's mom.  She has been blending Jonah's meals for a while now and has beautifully organized spreadsheets that she sent to me.  I think it's cruel that we can't live closer to each other to be able to help each other out... but thanks again, Patrice. I don't know what I would have done without your organization skills :)  

So far, it's been going okay.  I'm still experimenting and trying different things... but I'll get the hang of it soon.  Right now, I am using a Magic Bullet to blend, but soon plan on purchasing a super duper Vitamix!!  That way I can blend just about anything.  Right now I'm doing a random mix of things like avacado, baby meats, steamed vegetables, yogurts, fruit, protein powder, aloe vera juice, barley green, flaxseed oil... anything nutritious, high-calorie, and high protein.  He doesn't have NEAR the belly-aches he was having before.  Now we will just have to see if he starts gaining a little more weight.  He was right at 20 lbs. on Wednesday and has been about the same weight for a few months.  I'm also able to get more calories in him in a day (still the 5 feedings, though... because he can't tolerate high volumes), so I am able to run just water in his feeding tube at night.  That's another thing... I was shoving so much Pediasure in him, by that the time I was finished feeding him, he was too full to flush with a bunch of water.  But he definitely needs a great amount of water because he's losing so much fluid through his wounds. 

Anyway, so that's where we are on the feeding stand point.  I should be getting the results of his wound cultures in by Monday.  I'm pretty sure there will be something there and that we are going to try and have to get through a whole round of antibiotics.  Especially since he's been running a little fever.  I think we just need to at least try and see if he can get through one round and see if that helps him at all.  If I can keep the probiotics in him... and this new diet, maybe we can fight the diarrhea to a point where it's somewhat tolerable.  

I've been in pretty much a "closet funk" lately, I think.  I just feel like the older he gets, the more he realizes that he's different.  Call me crazy if you want... but I think he knows that he "looks different" and that he can't talk and we can... and that he has to be wrapped up and we aren't.  It's tough.  And it's just getting harder to see other babies and to be around other children.  Not for my selfish reasons, but just because I hate that he has to endure all of this- all the pain, the sitting inside and not being able to enjoy things that normal kids can.  When I rock him... which is A LOT-  I just stare at him, not even being able to imagine how much pain he is really in.  I know he looks like the happiest little baby from his pictures and videos (and don't get me wrong- he's happy most of the time).. but that doesn't mean he's not in constant pain.  When I look at his little finger tips, and his toes... or the sores in his mouth and around his feeding tube (I could go on for days with the spots that hurt him)- it HURTS me so much.  And yes I'm strong, yes I can deal with it, yes I will survive-  but sometimes I really feel like I'm headed to a mental institution.  It weighs on you when you watch your child suffer every single day and you can't do a thing about it.  Yes, I have a lot of patience... but there are times when I literally want to punch my fist into the wall and say a million really bad words.  It's just something you can't even fathom unless you live it every single day.  Okay... I'll shut up.  

On a brighter note, I'm pretty sure my beautiful sister- Tripp's nanny- is coming down for a visit in September (maybe if I write this, she will feel really guilty and HAVE to come).  I am sooooooo excited.  She's only been gone since June, but I feel like it's been 2 years since I've seen her (we have an extremely close family)... She's in Minot, ND.  Yes... that is about 28 hours from here.  Not just a hop, skip, and a jump away.  So please, Nanny, if you're reading this.  Book a ticket, already :) Thanks, Uncle Mike... we miss you too, by the way. 

Oh yeah... and when we went to the pediatrician, she "re-scared" me about all of the things that start going around when the school year starts.  Sooo... if you are sick, if there's a 10% chance you could be sick, or if there's a 10% chance that you've been around someone that could be sick.... we love you, but please... kindly don't come see Tripp.   This is NOT something I like doing... but we need to be very cautious all the time and especially during school time- that he does not catch anything.  From chicken pox to just a cold.  Either could kill him-  yes that's harsh.... and yes it's the truth.  SO if you do come see Tripp- please make sure you're germ-free as can be- and don't forget to wash your hands :)  We are trying to teach him to "sign" this... so I don't have to keep reminding people :)

Well, that's it for now... sorry no pictures.  I'll try and do a "picture" post within the next few days.  

OH, and I got my book Bella's Blessings in today.  I've already read 3 chapters.  DID YOU BUY YOURS YET??  See the below post!!!

Love,

Bella's Blessings

SO... I am VERY excited that I bought this book yesterday.  You remember Bella, right?  The little sweetie who is having the Bone Marrow Transplant in Minnesota.  And you can't forget her hilarious Daddy, Tim, who writes her blog.  Well, he also wrote a book called Bella's Blessings.  It's about their incredible journey with EB so far.  He is an excellent writer (as you can tell by his blog).  And I'm really looking forward to reading about another parent's fight through this same horrible disease.  I will let you know when it comes in and when I read it (that will have to be at night after Tripp is sleeping).  But meanwhile-- PLEASE go order his book yourself- PLEASE!!!  Buy it HERE.  Each month, over 50% of it's proceeds go to a different children's charity.  What can make you feel better about buying a book than that??  But most importantly, please buy a book to support Tim, his wife Angelique, and their daughters Ali and Bella.  I can't wait to read it!  

Love, 

Bring on the Pears with Cinnamon and Oatmeal!!!

Tripp ate his first whole container of baby food tonight!!!! Whoo hoo!! (Well, at LEAST 3/4... but maybe a little more than that).  I am so proud.  He ate it all within about an hour and a half!  That's definitely a first for him!!  He would only really eat pears before... but pears with cinnamon and oatmeal is definitely his new fav! 

SEE??

AND he's very neat about it... hardly no mess at all.  SEE? 

And I swear, he's not hiding it in those cheeks.... he really swallowed it!!! :)

There's all kinds of firsts around here-  He was showing off big time in his car today.

He now can sign: more, mommy, dog (pats chest instead of knee), head (he does hat), and can half-way sign "all gone." He pretty much at least tries whatever we ask him.  I'm pretty sure at this point it's going to be something new every day!  

And the "smile" and "muscles" never get old.

He actually "knows" what more means, though-  tonight, without me saying anything- he reached for my plate of beef stew, then signed "more."  Go, Tripp!!  

But he still never does it as cute when I have the camera out.  He is SUCH a ham.  

After his bath is his best show-off time.  He feels SO much better. 

He is like a totally different child before bath than after!

OH, and this may be random... but have I mentioned lately how much I love Tripp's pediatrician, Dr. Defusco??  She got back from vacation today and just called to see how Tripp was doing.
That's a good doctor, if you ask me.  She cares about Tripp so much and goes out of her way often.
And let me not forget Tripp's ENT, Dr. Rodriguez... who gave me her cell and said call me anytime.
Thank you God, for the best doctors Tripp could ask for.
Goodnight :)

Love,

Tripp's FIRST WORD!!! (in sign language!)

So, we've been working and working and working on the sign language thing.  And I think he's finally getting it.  He's always paid very close attention to everything we do, but lately he's just been a little more interested.

For awhile now, Papa has been pushing him around the house in literally anything he can find on wheels... my grandma's walker, her Hoveround (yes.), and the computer chair... well he LOVES it.  Anything moving- he loves.  Well when you stop pushing him, he kind of just looks up at you and starts shaking his body like, "Um, hello... keep moving!"  So we kept saying, "Do you want 'more'?" and doing the sign.  Well he GOT IT!  And now we've created a monster!! haha.

So Grammy and Papa got him a car.  It's kinda perfect because his feet don't drag and we can push him- and he fits in it perfect.  And when he's in it, if you ask him if he wants to get out... he shakes his head "no."  And then starts his "more" sign.  The way he does it is so cute because he can't do it with his fingertips, of course, because they are raw.  So he does it with one fist and one open hand.  But trust me- he knows exactly what it means!

OH, and he definitely can say "Mommy," too!!  He won't do it often... but if he's in the right mood, you can get him to do it.  Except the "Mommy" sign is pretty darn close to a LOT of other signs... Who thought of these things???  Don't they know Mommy should have it's own- VERY distinct sign??  O well, we are working on all kinds of signs every day now.  And he's taking more and more in.  He's our little miracle baby- I swear.

As far as "how is he doing?"... well there's no other way to put it than- he has good days and he has bad days.  I never know what kind of day it will be.  A new day always brings a new challenge- mentally or physically.  The mornings are still extremely rough for him.  It takes him a few hours to before he can actually sit up and play or sometimes even open his eyes.  He is in a lot of pain in the morning- even with his pain medicine (which is just ibuprofen).  His face is looking a little bit rough these days.  I'm not sure if it's the heat or what.  But he's getting new blisters on his face and head... and the ones already there- I'm starting to think they have no intentions of healing.  But we will see.  He likes to pick at his sores now- which is a nightmare.  But poor baby- they must be so aggravating and so painful to him.

Bath time is still the worst for him.  He DREADS it.  (Me too.)  When you sit him on the table, he immediately knows and doesn't stop crying until you lay him back on the table naked.  He almost gets to the point where he makes himself sick from crying.  It's painful to watch- and the more times you watch... it NEVER gets easier.

So, he still has his ups and downs.  Last week he was running fever and his sores started looking really bad.  So I took it upon myself to stop the new medicine he was on and go back up on the steroids.  I was worried about starting something new when he was doing so well... and once again- I should've followed my "Mommy intuition."  He had some fluid in his ears, so I'm hoping that was what was causing the fever.  That or his teeth.  We didn't do wound cultures, because there was so certain sore that looked infected-  they just all-around looked junky.  So I'm hoping maybe it was just a little viral infection and that now it's passed.

But check this kid out-  he brings so much joy into my life.  What in the world would I do without him??

More...

Muscles with Daddy



3 Little Monkeys.



Relaxin' in my new car.  I've got them right where I want them now.

Cheese!!

Eating his vegetables.

Signing "More"

Tummy time is getting a little more tolerable!

Could you smile like that with all those bo-bos??... I know I couldn't!!

Oh, and don't miss Tripp's tournament post below:) 

Love, 

Tripp's 2nd Annual Softball Tournament

Tripp's tournament was another success.  I want to send out a HUGE thank-you to everyone who helped out, played ball, or just came to show their support.  I want to especially thank EVERYONE who helped out in the concession stands- and I want to especially thank Mrs. Karen and Mr. Ralph Richoux and Mrs. Pam and Mr. Carey (Randy's mom and step-dad) for staying late both nights... and until midnight on Saturday night closing things down.  We TRULY appreciate your help- we couldn't have done it without you!!!!  I want to thank Mr. Randy (Randy's dad) for bringing his pit out and cooking for the tournament.  I want to thank anyone who took time out of their schedules to help our family.  The tournament was thrown together last minute and wasn't advertised too much... but I want to thank Randy for all of his hard work to make the tournament a success.  We both promise to give a better notice next year... hopefully we won't have so much going on.. HA.

Anyway, here are some pictures from the day... it was SOOOO hot.  We brought Tripp straight from the car into the press box that Randy fixed up for him... and it was cool, just not enough for him.  So we drove him to the other concession stand which was MUCH cooler and he hung out in there for a few hours.  He was tired- but an angel.  He loved being able to see different people and different scenery.  I'm so thankful we finally got to make one of his benefits so I could thank everyone in person :)

He was "waving" to the players! 

Tripp and Mommy

Daddy playing 3rd base.

Tripp watching Daddy through the window. 

Mr. Ralph and Mrs. Karen.

This couple has worked their butts off at every tournament we have had so far. 

Not just concessions... but organization and ANYTHING we need. 

THANK YOU.. we are SO grateful!

Kenny, lose the sunglasses... haha. Just playing.  They're cute.

I had a few people contact me about sending donations.  Tripp's fund is set up at First American Bank & Trust in Norco, LA.  The address is: 903 1st Street Norco, LA 70079.  If you are sending a check, please make it payable to the Randal "Tripp" Roth Benefit Fund.  In the Memo line, you can put the Tax ID #: 27-0458627

Thank you again to everyone!!  I will never be able to express my gratitude for what SO many people have done for our son and our family.  We love you dearly.

Love,

What's going on and Tripp's Benefit

Hi friends... This week has been a good week.  I have a whole lot to be thankful for!  Tripp is still doing well- his eye still looks good (not AS great as it looked before- but good) and his trach is doing good.  He just hasn't really been feeling GREAT in just the past few days... a little worse than he's been.  I think it has to do with me going down on the steroid.  Right now,  I'm concerned about his sores- I started that new medicine (Dapsone) along with the steroid.  It's supposed to eventually take the place of the steroid and hopefully have the same effect- well... I don't think that's going to be the case.  With the steroid, I could just go up on the dose and taper back down every other month or so when his sores and his mouth started looking bad.  This would at least give him a break from all the inflammation for a few weeks.  I just don't think this is going to do the trick- but I'm being patient.  His sores are starting to drain a little more than normal, and his mouth looks horrible.  But this little HAM still has it in him to smile.

Yesterday was Randy and I's 2nd anniversary!! Whoo hoo!  We've made it through what was (SO FAR) the toughest year of our lives.  I'm not going to lie- it's been HARD... being newlyweds, finding out you are pregnant right away, then finding out your son is sick and not supposed to live a year- and then LIVING that year with your son, facing one challenge after another. We've had NO time to actually be a "couple" with a normal life- and we may never have a "normal" life.  But really, what is a "normal" life.  You have to make your own normal- and we are trying- and we haven't given up. That's what is important.

We are in the process of selling our house.  That has been another stressor.  But it's what we have to do for our family- and it's the right thing to do for all of us.  We have a wonderful, caring, generous family who is helping us out right now.  God has answered my prayers at this time:)  We are truly blessed to have such wonderful people in our lives.  Thank you thank you thank you!!

Well, I know this is VERY short notice- but it was short notice to me, too!!  Tripp's annual Benefit Softball Tournament is this coming weekend.  It will be Friday and Saturday- August 6th and 7th.  It will be held at the same place- the West Bank bridge park in Luling, LA.  We have teams already- but if you have a team (men or women) and would like to play, please contact Randy @504-496-4793 (yes this is his cell- he gave me permission... ha) And if you don't play softball and just want to help out with concessions or anything else- also contact Randy!!  OR if you just want to come hang out and support Tripp- that will be great too!

Randy is working on getting the press box ready for Tripp so that he can FINALLY make it to one of his tournaments!!  I'm crossing my fingers that nothing happens-  He was in the hospital for both of his benefits last year and then his 1st Birthday- well you know how he felt for that!  It seems like every big event- something happens!  Hopefully this year will be different.  Please say a prayer:)
Thanks again for the continued love and support even though I haven't been a faithful blogger :)  I love you all!

Love,