Sunday, July 31, 2011

Fun for 50 Cents

He spent his Sunday morning completely enthralled in his newest toy...

A set of cheapo Tinker Toys...

Purchased for two quarters...

Whilst yardsaling on Saturday...

He really wanted a deflated UK basketball.  Which I bought (also for 50 cents). 

But, since Mama knows best, and I insisted we buy these too, I would say that it was a win-win for all involved :)

My miracle.

I'm somewhat speechless over these past 2 weeks.  Never in my wildest dreams would I have thought that so many people could love my little boy.  The support that we have received has not been limited to family and friends- it's now turned into perfect strangers and people all over the country (and some even outside of the country).  Sometimes it doesn't even seem real.  Watching the video from last Monday night at Tripp's prayer vigil- was completely humbling to see so many people gathered together praying for my son.  It brought tears to my eyes to see pictures of people lighting candles and bowing their heads for my son.  And it gave me chills to see the video of all the amazing things that took place that night- all for my son!
So once again, I say THANK YOU.  
For your prayers, your support, and your encouragement.
Thank you to everyone who have sent cards and are doing (or have done) fundraisers for us!
I am so proud that Tripp's name has raised awareness about EB.  That is SO important to me- a voice for these children living with this disease who either didn't live long enough to have a voice, or whose voice is yet to be heard.  I'm so proud of my little man- fighting hard every day, just to touch one more life. 

Here is the beautiful video of the Monday night prayer vigil that two great photographers, Brenda Sison and Michael Lovett, put together for us. 

My Tripp is the definition of a true fighter.  I am so happy to say that he has started feeling better in the past two days.  Needless to say, the last 2 weeks have been some of the toughest of my life (emotionally).   I have never seen him anywhere close to being that sick.  I thought he had completely given up and was ready to stop the 2 year fight that he's had.  And I couldn't be more proud to say that I don't think that's the case yet.  Between Dr. D, Dr. Benson (our local dermotologist and family friend), Trea and Amber (Tripp's super fabulous pharmacists), and myself- we discovered that this 3 week period of high fevers, extreme pain, and horrible excess of blistering could have been a product of the herpes virus.  We started figuring it out when I got a fever blister about a week ago (and I've never had a fever blister in my life).  The type of herpes virus (which is common in children and obviously adults that get fever blisters) can be almost as painful as shingles.  Which could explain the amount of pain that he was in.  And with the virus, you can also run very high fevers (which would explain his 105.2 fevers).  This type of virus (bare with me, I'm not too familiar with this) can also cause lesions in your mouth/throat.  Which could also explain his pain and why his mouth/lips were so swollen.  Dr. Defusco had mentioned this once before when she noticed little clusters of blisters on the tops of his hands that looked different.  At that time, which was about 2 months ago, we started him on Acyclovir (an antiviral), just to be safe and then never really thought about it again.... until I got my fever blister.  Then she started him back on the Acyclovir (this was last Friday).  And about 3 days ago, the horrible horrible black sores/scabs on his face started to dry up and to heal and gradually, the tremendous amount of pain started to subside.  

This was also around the time of the two prayer rallies...
 Could it be the thousands of people who have united in prayer?  I'm definitely a believer of "prayer in numbers"- as you already know.  And I truly believe in Tripp's miracle of healing.  So just as I believe that this antiviral medicine could be what's causing him to feel better, I just as much believe that it could be from the power of prayer coming from all of you in the past week.  

I hope you all believe it, too.  I hope you see and feel how God is working through all of you.  I have so many people that are concerned about us that I can't even keep up with my messages and e-mails.  It's amazing.  I am completely awestruck.  There are people who write me telling me that reading our story has changed their lives.  Do you know how touching that is?  There aren't any words that I could use to describe what that feels like.  I'm going to be completely honest.  The reason why none of this seems real is because I don't feel like I am doing anything different that everything that I am supposed to be doing as a mother.  I have wanted to be a mom since I was about 12 years old.  I have loved children my entire life and dreamed about having children of my own.  Am I a good mom? Of course... but for me, there was no other option than to step up to the plate and fight with everything in me to give my child everything he needs- healthy, sick, disabled, or whatever comes our way. 
Why?  Check out this video from yesterday... 
There is nothing more rewarding than this smile...

This video was taken yesterday right after Sister Dulce (a healing nun from Baton Rouge) came to our house, blessed him, and said she will take his pain away.  We've seen Sister Dulce before, about a year ago, but since we couldn't make the trip to see her again- she came to us.  I am so grateful because she is a very busy woman.  And a mighty woman of God. 

Even though little man is feeling better, he still hasn't stood up (or even SAT up), but the past 2 days, he's been almost back to his fussy, rotten little self.  Now, I hate to even post this because I always, always jinx myself and right after I say he's feeling better, he spirals back downhill... but I couldn't hold out on my faithful prayer warriors any longer :)
He's still on a tremendous amount of pain medicine- and I'm pretty sure that even before all of this, he needed better pain management.  So I'm thankful that we switched pain medicines.  He's on a really high amount, but I can always tamper down little by little if I need to.

This was his face 2 weeks ago...

And this was his face last night...

Does it have anything to do with the community/world coming together in prayer?
I think so :)
Please keep the prayers coming- I know they are working.  
Not only in Tripp's healing, but in bringing more and more people back to God.
And at this time in the world, there is NOTHING better than that!!
This kid is touching lives and taking names... 
He's my miracle... whether he's around 10 more years or 10 more days.
I love him so much.

WWL Channel 4 and WDSU Channel 6 were both at the prayer vigil on Monday.  
In case you missed it, here are the newscasts...


Thursday, July 28, 2011

Lil' Butterfly

There are two lasting bequests we can give our children. One is roots. The other is wings. 

~Hodding Carter, Jr.

Wednesday, July 27, 2011

Silly Ol' Bear!

Last night, Piper and I, along with Nana and Boppa (my M&D), went to see the Winnie the Pooh Movie.

Going to the theatre is simply exciting all by itself.

When I told Pipe we were going she was shaking with excitement.

She pretty much acts how I feel inside about these simple pleasures.


I didn't have any huge expectations for this movie but as always, looked forward to doing something special with my biggest little girl!

In the end though, I have to admit that this was one of the best kid's movies I've seen in a long time!

First of all, they used classic animation. Oh, how I've missed it! (I LOATHE 3D!)

Second, there was no catering to the adults with humor only they would get. That was fun and all with Shrek. Then it just got annoying.

Thirdly, regardless of the last point, I still laughed and found it funny. It helped that my daughter was letting loose with a full on belly laugh next to me. But seriously, Pooh thinking that Owl is sneezing because he says 'issue' and Piglet's innocently useless efforts to help his friends escape from a pit they've fallen into is hilarious!

Finally, there was nothing in the movie to make me uncomfortable about having brought my 3 year old to see it. Which is golden and increasingly hard to find.

So, go see this movie with your kids! They'll enjoy it and so will you!

Tuesday, July 26, 2011

Nature Shirts

Today, thanks to my sister-in-law inviting us to join her little gang's craft adventure, we made nature shirts!
And are they ever cool!

Yesterday, we started by going for a walk around the neighborhood collecting nature items. The kids were very excited to find things and add them to their collecting bag!

Then, today, we layed the items out on the shirts....

And sprayed them with fabric paint!
Here are the fantastic results:

Piper's shirt.

Taitum's shirt.

The finished products hung up to dry!
Aren't they great?!
The best silouettes were the flower and fern ones.
They kinda had me wishing I'd done my own shirt!

Best toys for toddlers

Hi! Hi!

Who was I to think that summer was going to be laid back and relaxing?  Pshaw.  Totally anything but. 

{And I'm pretty sure totally anything but is not a sentence, but I am determined not to backspace as it saves me time :) }

School is coming real soon, so I've been blogging a lot over at The Inspired Apple. If you've found this blog recently and are looking for teaching-related posts, I blog exclusively about school there.

In other news, after almost two months of sleeping in our bedroom, Becks is *finally* in his big boy room!  It's not even close to being done, but when you've had to hurdle a pack-n-play to get in bed every night it doesn't matter that the toe strip isn't in place in his new room yet.  He can still totally sleep there. 

I don't know how many of you live in older homes or have lived through renovations, but it's exhausting!  There is always something to do.  And if you've followed me for any length of time, you probably know that we've been renovating nonstop since January of this year.  That's seven straight months of DIYing, dust, displaced furniture, and the occasional disagreement ;)  I'm pretty sure that somehow spells S-T-R-E-S-S or maybe C-R-A-Z-Y.

I have some great thrift finds to share {soon-ish}, so stop in soon :)

Happy Tuesday!

Three-year-olds are a trip! 

Sunday, July 24, 2011

Are Your Feet Kissing??

Piper is at the point of being capable of doing most things on her own. Getting herself ready for the day, getting her own snack, setting her own spot at the table. Not only does it make things easier for me but she is extremely proud of her abilities.

Although she has conquered many different skills over the past year, there are still some that need some work. One such skill being getting her shoes on the right feet! She would get SO frustrated when she'd be all ready to go and I'd have to stop her and get her to switch her shoes.

So we came up with a solution. Most of her shoes now have a smiley face on the inside part of each shoe. She knows that her shoes are on the right feet when they are "kissing"!

The question is no longer, "Are your shoes on the right feet?" but rather "Are your feet kissing?"
Works like a charm!

Wednesday, July 20, 2011

I think he's known it all along...

I know I've been needing to update, but it's just been about finding the time to sit and gather my thoughts... which have been ALL over the place lately.  So where shall I start?  I think my last post (other than the poem) left off saying that little Tripp man was doing okay, and being a little fussy ham.  I know you all know that very gradually over these past 2 years, Tripp has only gotten worse.  And in the past few months, his play-time has gotten to be less and less.  But in the past week, he has pretty much spiraled down-hill and we just can't figure it out.  

At the beginning of last week, he started running fevers.  He always runs fevers, (he's constantly battling some type of infection) but these fevers were between 103.0-105.2, which he has NEVER run.  We (Dr. D and I) juggled around the possibility of the hospital, but had not made a decision yet.  We thought about the home health nurse trying to start the IV antibiotics at home, but then realized that this wouldn't be the best idea- considering that he probably would not leave it in and he would need the antibitotics around the clock.  SO, she waited until Tuesday night when his temperature dropped between 93.0-95.0 (which was really odd, but can be a possible sign of a blood infection) before she decideed to have him admitted.  

Now I will remind you that Tripp has not left this house since October of last year- at all.  That was the last time he had been admitted to the hospital.  He: 
1. Cannot go more than about 5 minutes without his humdified air on (and this machine cannot be plugged into the adapter in my car, it's too big). 
2.  Would never ever let us put him in his carseat for a 45 min drive- no way, no how.... air or no air.

SO- it was either:
1. Call an ambulance (which makes me nervous just typing it), or
2. Borrow a big RV from my dad's work where we could take Tripp's rocking chair with us.

The ride there definitely went better than I would have expected.  Without that rocking chair, though, we would have been up a creek without a paddle:)  The ride was pretty bumpy... and on the way there Tripp was so nervous that he kept switching between my mom and me.  And being that we both get carsick even in the passenger seat of a car, we were both pretty nauseous by the time we got there.  

We went straight in to the ER, no wait... they checked us in and took us straight into a room.  Meanwhile (from the RV to the room- which was just about a total of 5 minutes)- Tripp was FREAKING out.  He was so scared and so confused.  And as soon as we got him into the room, the staff brought in a rocking chair, and he settled down quickly.  

I just cannot say enough about the staff at Ochsner on Jefferson.  Never once have we gone in and had any type of bad experience.  Dr. D always calls ahead and lets the ER doctor know we are coming, so the doctors and nurses are always more than accomodating to us.  They started the IV in his head.  We had to hold his little hands down while he was in the rocking chair and while he cried (but overall he was such an angel).  After we got the IV in and secured (with his special tape), he was SO good.  He would try to feel it and I would say, "That's just some tape, buddy." and he would put his hand down and leave it alone.  

He got his first doses of 2 types of IV antibiotics (and bloodwork drawn) and then they admitted us onto the Pediatric unit (which I can also never say ENOUGH good things about).  They all know us by name and treat us like royalty (really).  And the pediatric doctor on call that night was Dr. Fogarasi- whom we ADORE.  We didn't get in the room until about 3-4 the next morning and then after getting situated, cleaning the room, fixing his bed, cleaning him up, and then showering ourselves- we didn't get in bed until after 5 that morning.  And all of that time, Tripp left his IV in his poor little head.  And then, I'm assuming as soon as we finally fell asleep- he ripped it out.  Because when I woke up at 7 that morning, it was lying right next to his head:)  

So then there were decisions to be made.  Were we going to start a new IV to give him the rest of his antibiotics when he would probably just pull it out again?  Were we going to keep him in the hospital where is SO anxious and out of his comfort zone to treat him for something that would just come right back?  The pediatrician on call decided that she did not want us in the hospital.  She wanted us to be home in our environment, where Tripp would be comfortable.  The plan was to take him home on antibiotic injections (which is pretty much the only option left now that he is resistant to almost every oral antibiotic).

Dr. D decided that she wanted me to talk with the PICU doctor, Dr. Finger, while we were in the hospital.  She wanted him to give his opinon on where we should go from here.  So Dr. Finger came and spoke with my mom, dad, and me.  It was rough, I have to admit.  He (in a nutshell) said that he thinks that we are at the point where we are doing things TO him instead of FOR him.  He said that if we ever admitted Tripp into the PICU and wanted us to stick an IV in his head, or give him an antibiotic shots- that he would not do it.  He said that in his opinion, to inflict pain on him (such as shots and needles) just  trying to rid an infection that is going to come right back- is almost cruel.  He made it a point to ask me if I thought that he was getting worse- and of course I said yes.  Especially his skin.  
He didn't want us to make any decision right then and there, but just to think about what he said.  And honestly, everything he talked about is exactly what I've been feeling over the past few months.  When it's his time (whenever that may be), I've always said that I would keep him at home and keep him comfortable.  And doing anything that causes him MORE pain when we are trying to treat an infection that is going to come right back the second we are finished treating it... is not my idea of comfortable.  

So where are we now?  We are home, of course.  
And we are working on his comfort.  We have done a number of things in the past week.  And by we, I mean Dr. Defusco, Trea Landry (CVS), Don Fellows (Central Drugs), and I.  In the past week, we have  started 2 new pain medications and 2 new anxiety medications.  Baths have been, of course, worse than EVER.  There are absolutely no words to even begin to express bathtime.  I'll just leave it at that.  And now diaper changes are just as bad as bathtime, they just don't last as long.  Tripp has been getting an ungodly amount of pain medicine in the past few days.  And we still have not gotten him to the point where he is comfortable when you move him (or of course bathe him or change him).  Now don't take that the wrong way- for the past week, he has spent every day pretty much knocked out in the rocking chair, not even being able to say "more" or "yes."  But when we go to move him, sit him up, or switch positions- he starts trembling in pain.

Ready for just a little "good" news?  My sister is in town!!  She flew in last Sunday and is staying until next Tuesday.  I am so happy to have her here.  I really needed her.  So did my mom:) 
I'm trying not to even think about her having to fly back to North Dakota... that is not going to be a good day.  

I really do not know what I would do without Tripp's doctor and pharmacists.  Honestly, they are more like friends/family to us.  Even if I tried, I would never be able to thank them enough for what they are doing for Tripp.  They are working together 24/7, racking their brains, helping each other, seeking help from other healthcare professionals, and trying to figure out how to make my little man as comfortable as possible.  Dr. Defusco is coming to the house, calling me every day, and working so hard for Tripp WHILE she is juggling her other patients (it just seems to me like she wouldn't even have time for anyone else with the time she is putting in for Tripp).  I have the utmost respect for her for being the best doctor we could have ever hoped for.  And Trea Landry (Tripp's pharmacist at CVS) has been like family to us.  He and his wonderful wife (who is also a pharmacist) check on Tripp every day.  He drops off prescriptions to our house, and hardly ever comes without bringing us food or asking what else we need.  He has spent the last week also racking his brain trying to figure out how to make Tripp more comfortable.  He and Dr. Defusco both have been by the phone- 24/7 waiting to see if I need anything. 
I love them.  And feel so so blessed to have them in our lives. 

This was his bottom in the hospital a week ago- it is worse now, with more redness and drainage from his wounds.

I realize that this may be hard to look at, but I just want everyone to know that this is not even 1/4 of his pain.  His legs are covered in these same wounds, as well as his neck, face, hands, feet, etc.  The picture that I last posted of his little leg in my earlier post was the "good" side of his leg:(
This little saint is having to endure an unbelivable amount of pain- and since his pain and wounds have only gotten worse and not better in the past days/months/year... I think it is only fair to my little angel to finally do the best we can to make him as comfortable and pain-free as possible.  

Is this an easy decision?
Am I clinging to my faith and trust in God now, more than ever? 

 I have known since Tripp was about 2-3 months old that I should expect to outlive him.  
And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would.  I could not even begin to count or explain the amount of emotions that have gone through my body through these past years... wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn't have to suffer anymore.  
And as many times as these emotions have felt- there is no way I could begin to explain what I am feeling at this point.  

Is this just another hill we have to climb and he's going to shake this and start to fuss us again?  
Or is this starting the events that I have dreaded and cried over for the past 2 years? 
I don't know, you don't know, the doctors don't know... only God knows.  
And I have accepted that with everything left in me.  
I have totally turned it over to Him.  
I realize that I was chosen to be Tripp's mother for his time here on Earth. 
And like both of the priests that I have talked to in the past two days have said- Tripp was chosen to carry this cross.  He is a disciple of Jesus and is truly a saint.  One priest stated that we should be praying TO Tripp instead of FOR him, because he is truly blessed by God and has a special place right next to Him in heaven.  I truly believe this in my heart.  

But of course, nothing in the world can ease the pain of watching your child suffer and knowing that "keeping him comfortable" is the first step in letting him go. 
My prayers now are for God to do His WILL- not MINE.  
My prayers are to the Blessed Mother Mary to give us comfort. 

GOD BLESS each and every one of you who have reached out to our family 
(thoughts, prayers, emails, food, phone calls, ETC). 
I am overwhelmed by the amount of lives that my little man has touched. 
I don't think Tripp is suprised, though... 
I think he's known it all along. 


Tuesday, July 19, 2011

These Are A Few of My Favorite {Preggo} Things!

I find that things that I never think twice about become very precious when I am pregnant!

Like Tums Smoothies.

They are a billion times more bareable than the regular ol' kind and make a world of difference when I consume something that baby simply doesn't like...

Miss Vickie's Salt and Vinegar chips. Ok, so maybe I love these ALL the time but even more so right now when I'm craving lots of salty salt!!

And this summer's super snack... Blue Menu Fruit Juice Freeze Pops. Best. Thing. Ever.

If you're on my Facebook, you've heard my desparate plea for easy chicken recipes exempt of tomatoes or anything nauseating. The result: a new found love for Campbell's cream soups! Easy, yummy meals that don't make me lose it! :)

Like tonight. I made Chicken Pot Pie using cream of chicken soup. It was delish! I even had 2 helpings!!

I also officially love ruching. It makes for very comfortable shirts that satisfactorily cover the emerging baby bump!

Um, and I love elasticized waists, too....

Finally, above all else. I love this guy:

Not that it takes pregnancy for me to realize how wonderful he is. But he's the glue holding us all together right now. Pitching in with whatever needs to be done, doting on me when I feel like crap, holding me when the hormones get the best of me and I turn into a blubbery, emotional mess and being Super Dad Extraoridinare! He has this way of making everything alright!

What about you? What were/are some of your favorite things during pregnancy?

Monday, July 18, 2011

Charleston: The Extended Version

{This is going to be long and picture-laden, but the documentation is more for my benefit!}

We scheduled this trip back in April, excited about taking Becks on a vacation with just us (something we'd never done before) and having the opportunity to take him on a plane (again, something he'd never done).  I'm glad we scheduled and paid for it way in advance because I was totally feeling the pressure of grad school last week combined with the pressing urge to get back to my classroom to prepare for the start of school next month. Admittedly, I was feeling pretty back-out-ish. 
But, last Saturday, we arrived at the airport a good two hours in advance so that we could make sure we got through security and to our gate in plenty of time.   We were totally "that" family - carting a stroller, carseat, and multiple carry-ons around the airport.  Fortunately, Beck was so enchanted with the airport and the bagel stand, we knew it would be an easy wait. 
At least that's what we thought during the first two hours. 
Our flight was delayed and delayed again.  And then it was delayed some more.  We spent FOUR HOURS in the airport awaiting our re-routed flight.  We were also one of the last to board once the plane was there, and while the carseat was a brilliant idea for keeping Becks seated and comfortable during the flights, it was a big ol' pain to carrying through the terminal and hook securely in the plane seats. 
Becks *loved* the plane rides.  He giggled during take off and told us how "fun" the turbulence was.  My biggest concern was making sure he didn't kick the passenger in front of him!
Once we arrived in Charleston - four hours after the time were supposed to initially be there - it was POURING.  Not just a little drizzle, but literally dumping buckets from the sky.
And did I mention our luggage didn't make it?  That was just the cherry on top of our very long day. 
So, there we were in Charleston, four hours late, experiencing a monsoon, drenched, and without a change of clothes.  The positive attitude I usually carry was lost somewhere in Charlotte when we caught our connecting flight.  The only saving grace was the glass of Riesling B found for me at the hotel bar, combined with a delicious (albeit late) dinner from The Kickin' Chicken.  Oh my YUM.  And that was only the start of my spiral into all things southern and delicious.  Because once I started Saturday night, I didn't stop eating until we departed on Wednesday when I had a super delish mini-pizza in the airport. 
It also bears mentioning that our luggage didn't arrive until 3:30pm the Sunday, so we spent one stinky day touring the city in our once-rainy-then-sweaty clothes we wore on the plane.  Because Charleston turned into a sunshiney sauna the whole rest of the trip. 
Lucky for our smelly selves, we happened upon an *amazing* public fountain where Becks spent a good hour or so splashing around.  So much fun. 

We also treated him to gelato for lunch.  Because who doesn't eat sweets for lunch on vacation?
Our hotel - The King Charles Inn on Meeting Street - was all kinds of awesome.  Our accommodations were great and the staff was helpful.  They had a pack-n-play waiting for us when we arrived with brand new sheets and all.  I was so impressed.  They also had cocktail hour every night where you could get complimentary hors d'oeuvres and happy hour priced drinks.  A sweet tea mint julep for this Kentucky girl?  Count me in.  Becks was smitten with the free cheese, crackers, and grapes.  It was like they were catering to his specific three-year-old palette.  We attended every night we were there. 
For dinner that night we ate at Jestine's (meatloaf for me and B, a peanut butter and banana sandwich for Becks), and then toured the fire department across the street.  A successful first day (minus the missing luggage). 

The second day we were there we ate breakfast at Toast, and then decided to rent a car to drive to the beach.  Money well spent.  {I really wish I would have taken a pic of the snazzy little Kia Rio we zoomed around town in.  Not ideal for the ginormous carseat, but great on gas mileage!} 
Breakfast at Toast.
We had no idea where we were going other than across the bridge.  We made it to Sullivan's Island, found a parking spot on a side street that appeared to lead to the beach, and spent the next several hours oceanside.  In short: Becks *LOVED* it.  And, if we ever return to South Carolina, I can promise you we will stay in a beach town close to the ocean.  Live and learn. 

Dinner that night was at Hyman's for seafood and this is where I decided I would subsist on shrimp and grits alone forever and ever amen.  Seriously amazing. 
Before dinner at Hyman's.  B's souvenirs were a Charleston pirate tee and that foam sword. He loved it so much that he fell asleep holding it that night.  See below!

Just throwin' this one in there since we didn't get any other shots together!!!
On day three, we visited the market, ate a whole bunch, and revisited the fountain.

We came home last Wednesday and our flights back were perfect (Becks even slept on the last one!). 

Overall, here's the DL:

beachtowns I'm used to visiting - ignorance on my part, I realize.  I would LOVE to go back with B or another couple - sans kiddos, of course!  Also, if there's a cooler season to visit in, I'd totally go then :)