Hear ye, Hear ye.....

Tyler's wish has been granted!  On Saturday, we leave to head down to Florida.  We plan on stopping on the way down to see my grandparents and spend the night with cousins.  We are scheduled to check in Monday at a wonderful resort called Give Kids the World.  If you want to know more about this magical place, click here.  We will spend 7 days there!  Tyler's make a wish trip includes 3 days at Disney, 2 days at universal, and a day at Seaworld.  There are also other tickets we can get, such as Legoland.  Make a Wish Georgia also arranged for Tyler to attend Mickey's Christmas party!  We can't wait!

So many people have worked to make this wish come together for Ty!  Aaron and I are both blessed to work for employers who are allowing us to do this, even after having to take a month off for Tyler's medical needs earlier this year.  The kids schools are working with our children missing a week of school.  Make a Wish Georgia planned everything-even wheelchair rental! The Amazing Miller's are watching our house and the Fabulous Donna is taking care of our dogs.  Thanks everyone!

We may post some pics on Facebook, but mostly we will be enjoying time as a family.  We will be celebrating Tyler and his superman-style awesomeness!  We will watch Joey and Logan be kids without the added stress placed upon them this year.  As for Aaron and I, it will be good to get away from everything for a few moments.

Tyler update, make a wish, and more!

"Tyler is doing well today!"

That has become my standard answer when I am asked how he is doing.  He is.  He is sleeping better and the seizures seem to be under control.  He started high school and seems to enjoy it.  He has enjoyed his summer.  He is back to tormenting his little bothers- oops, I mean brothers.

Tyler has come out of his surgery, which seems to be successful, with flying colors.  If it wasn't for a follow-up visit, we would be carefree and worry free.

It has taken me a while to write this post because I am doing well at suppressing things I don't want to deal with.  At a follow up x-ray, the doctor saw an abnormality in Tyler's abdomen.  We were sent to a specialist and here are the results.

*  Tyler's abdominal organs are rising into his chest and adhering to his heart and lungs.

*  They have done this before and the surgery to correct it almost killed him.

* The specialist recommends we not put him through the surgery again as his chance of surviving the surgery is slim.

What does this mean for our family?

Basically, we are grateful and cherish the time we have with Tyler.  The doctors say it is hard to estimate future life expectancy.  He could go into a crisis tomorrow or he could live this way for 20 years.

I could climb back into the blanket fort I spent the first few months of the year in or I can choose to live.  The bottom line is no one is guaranteed tomorrow.  There were times I didn't think Tyler would live to see the age of 5.  Next month, he turns 16.  Tyler is the kiddo that made me a mom.  He is amazing.  Autism and Down Syndrome are just one part of him.   It doesn't define who he is.  Tyler is a fighter.  Chances are he will outlive me.  So, we choose to celebrate.  We celebrate who he is and his place in our family.  (Honestly, I try not to dwell on the future too much.  I could break down completely but I choose to suppress.)

We were referred to make a wish.  Tyler has been granted a wish and we are currently waiting to hear about details.

SOOOO... That is our reality.  We try to update people but we missed a few this go round.  Sorry!  :)  Consider this our update.

On another note,  Tyler is participating in FOCUS Climb for kids.  If you would like to make a donation in his honor and help him reach his goal, visit his page here....

http://www.focusclimbsforkids.myevent.com/participant/215002

A Study of the Effects of Prolonged Hospitalization of Offspring on the Mental Health of Parents.

Days 1-5

• Everyone is so nice and helpful.
• Netflix is a delightful boredom buster.
• All of the elevators have cute names, such as Flower or Butterfly Elevators.
• Tyler enjoys TeenNick.  How delightfully age appropriate of him!
• They have a delightful food service system allowing you to personalize your child's menu and order it when your child is ready to eat.
•  The hospital library stocks a variety of movie to check out.
• My crossword puzzle book proves I am still smart.
• My husband was really smart to bring some extra charger cords for our devices.
• These rooms are painted such a calming color.

Days 5-10

• This hospital must have great benefits and pay their employees well, because everyone is so nice and helpful.
• Wow!  I have time to watch some of the original Netflix shows I’ve heard about.  I really enjoyed the comedy series I just finished.  Everyone is talking about Orange is the New Black.  Perhaps I should give that a try.
• I just have to remember to take the flower elevators down one floor and walk two halls to take the parking elevators to the Mint P2 deck to find the car.  Shouldn’t be a problem.
•  Teen Nick again?  Okay………
•  It is getting close to lunch so I better decide what Tyler will eat and call the Food service number to get his food before it is too late.  Then, I should call the nurse for pain meds so they will work so he can eat with his mouth all sutured.
• We are checking out the Spongebob movie again?  Don’t you want to try something else? No? 
•  I thought I’d be finished with more of the crossword book by now.  Three is still smart, right?
• It sure was lucky Aaron brought the extra phone charger since mine broke!  I wonder what this other cord goes to?
•  I wonder why the clock doesn’t match the colors of the room.  It also might be slightly tilted.  Hmmm….

Days 10-15

•  Everyone is so nice and helpful it makes it even more noticeable when I snap at them.  For the tenth time in the last 15 minutes, “No! I do not need anything right now!”
• Thanks to Netflix’s original programming I know how to make a shiv.  Also- I have begun to ask what she expects me to trade it for when she brings my son his drugs. 
•  If Butterflies like flowers, why is this elevator system so difficult?  Mint is green.  Just say green.
• Do any of these kids on Teen Nick have actual parents?
• It is 3 pm and I have forgotten to order him lunch. Just bring him anything on a tray.  Anything!  Why am I planning his meals?  Were there budget cuts?
• Die Spongebob.
• Oh my goodness, a crossword book!  I wonder who left this here!
• Are these cords breeding?  Why are they everywhere?
•  “Nurse, Something happened to your clock.  I think it fell.”

The Blankets at this Fort are Heated!

This just in from Tyler Watch 2015:   

Tyler is doing fine.  He came through the surgery with flying colors.  They have been keeping him in a induced coma since Monday.  We had a slight scare on Monday night because his blood pressure dropped.  I mean dropped to 47/11.  We could not get it to raise up for a few hours.  They were going to try to take him off the vent on Friday, but on Thursday night we again had some BP and oxygen problems.  This weekend, we have been chilling!  The plan is to try to take him off the ventilator tomorrow so fingers crossed!

EVERYONE here at Scottish Rite has been wonderful.  Our nurses rock here in the PICU!

The Blanket Fort has Collapsed... Good bye Blanket Fort......

Good Grief!  Today, I got pulled over by the cops.  I was trying to avoid the parking lot on 285 on my commute to work and ran a stop sign.  A couple of policemen on motorcycles pulled me over.  I was sure I was getting a ticket, a huge fine, and attitude.  I say that because when the police officer came up to the van, he seemed rude and cut off every sentence I tried to say. He mentioned my cell  phone was on so I was obviously surfing on my phone as I was driving.  He took my lisence and spent around 15 minutes running the tag.  During that 15 minutes, I was pissed. A ticket? Really? After everything else put on us this month, now I was going to have to pay a fine?  What else?!!  I was just trying to get to work so I could make sure everything was as done as possible for when I take an indefinant leave of absence. A fine?  More money out of our pockets?  Really?  Wasn't it enough we were going to be financing basically 2 households during the coming months since our family would be split into two parts?  I think I was more angry I had no time to explain I didn't know this area or see the sign.  (Not an excuse, but still!)  He wouldn't let me explain my cell phone was only on because I was using google maps to get to work.  I had the voice command going into the speakers on my van so I wasn't even looking at me cell.  Really?!!!!!

Surprisingly, I received a warning.  Later, when I was complaining to my Aaron that I couldn't seem to catch a break, he stared at me and informed me a warning was a break.  God bless my infuriatingly rational husband.

Sigh.

Ty's surgery has been scheduled for Monday morning at 9:45 am at Scottish Rite. Last time, we created a medical page through the hospital to give updates to family and friends.  We aren't doing that this time.  I will be updating our family blog.  There is a way for family and friends to sign up to get updates on this site.  That said, I will be taking a break from Facebook.

Frankly, I am bitchy.  I'm sorry.  That is the word that best describes me at the moment.  (Ask Aaron.  He better not agree.)    My emotions are all over the place right now.  I go from laughing to crying to being angry within a matter of moments.  Tonight, we ate tacos and I thought, "What if this is the last time Tyler eats tacos?!!" I am taking these feelings out on Aaron.  He is being so strong, but why should he have to deal with everything PLUS a crazy wife? :)

I feel isolated.  I read facebook and feel even more isolated.  When I see friends post about how they ran out of ketchup, I think, "Really?  It must be so hard to be out of KETCHUP right now!!" So I am out, people!  I love you and I promise to be a much better friend after this ordeal is over.  I am raw and I am broken.

Right now is rough.  I am so thankful for family and friends.  While I have felt isolated, angry, and lost lately, I have also felt love.  So many of you have sent us good wishes and encouraging messages.  I have received support and offers of help.  I love you all.

Deeper into the Fort.......an additional update on Ty

I just wanted to give you an update regarding Tyler's doctor's appointment today,  We have no good news.  Tyler's oxygen level is dropping.  More than we thought.  At night, it is so bad the doctor said,"If he were a full grown man in the hospital, they would be beginning CPR at that point."  It has already begun to cause him to have seizures.  So here are our choices.

#1 - Surgery.  Major surgery.  They will expand his nasal passages, expand his jaw, and reduce and reshape his tongue.  Afterward, he will be in a medically induced coma on a ventilator for 7- 10 days. Tyler has had issues with sedation and things in the past.  We have been told he could have a trache when he is released.

#2- We don't have the surgery.  He will slowly suffocate.  His heart will be suffer severe damage.  His organs will shut down.  He probably won't reach adulthood.


Going in to the doctor's, I was against having the surgery.  Aaron and I left the office speaking in half sentences.  How do you deny your child the chance to live?  It is going to be tough- emotionally, financially and, for Tyler, physically.  We have decided to have the surgery.

The scheduling process is underway.  We should have a date soon.  For now, my husband is married to a crazy woman.  I am emotional, scared, and angry.  I am angry my baby will once again have to fight.  I am angry we are being forced AGAIN to make decisions no parent should have to.  I am tired of getting a glimpse of calmness only to have it squashed.  Yep, tonight I am angry.  No child should have to deal with this and no parent should have to watch.

So now...I am taking a break from facebook.  I am probably putting my phone on silent.  I am going to hide in my blanket fort, drink wine, and eat chocolate.  I am going to go to church on Sunday and try to find grace because right now I am having trouble understanding God's plan.  

A List and a Blanket Fort (An Update on Tyler)

About a month ago, I spoke to Tyler’s pediatrician about issues Tyler was having sleeping.  He sleeps very little, never soundly, and snores whenever he is asleep.  Honestly, I thought we were probably going to have to have his tonsils out.  We had been told when he was younger he may have to have this done.  So, I wasn’t surprised when we were referred to CHOA’s (Children’s Healthcare of Atlanta) Sleep Center to have a sleep study done.  We scheduled the appointment without much concern.  I made a list of things we needed to do in preparation. 

Then, I noticed something.  One night at dinner, Tyler did something.  It was just a facial expression.  Looking at him, I thought of a friend I have grown up with.  She has epilepsy and has Petit Mal seizures.  Something in the way his eyes and face looked reminded me of her.  The only difference was his body stiffened up at the same time.  Another trip to the pediatrician and we had a brand new referral- this time to a Neurologist.  More items were added to my to do list.

Our sleep study was scheduled before the Neurologist.  Tyler and I spent a Monday night at Scottish Rite’s Sleep Lab.  He tried to sleep and I tried to keep him from pulling off the cords that were measuring all the things the Doctors needed to look at.  The next morning, our nurse came to disconnect him and casually asked me who his neurologist was.  Apparently, she was seeing some seizure activity on his scans.  Of course, when I asked and she realized we did not have an actual diagnosis, she refused to give me much more information.  All she would say was our doctor should get his report in about 7 days. 

The next day, we got a call from Tyler’s doctor.  It is never good when you get results back quickly. His oxygen is dropping at night.  Oxygen was delivered to our home that night.  Of course, my very strong 15 year old does not want to wear it.  It doesn’t stay on long enough to do him any good.  After discussing this with his doctor, we quickly made his ENT appointment.  There, we planned to discuss having the tonsils and adenoids out to eliminate his sleep apnea. 

Our Neurologist visit was scheduled before the ENT visit.  That visit gave Tyler a new diagnosis.  Tyler is indeed having seizures, probably triggered by the drop in Oxygen and lack of sleep at night.  My brain was on overload by this point.  Even more things were added to my growing list.  However, despite random crying spells and dealing with mom guilt where you blame yourself for not discovering this sooner, I was dealing with everything.  I had a list, I had a plan, I had carefully laid out steps to potentially correct all of these issues.

Because we knew we were probably going to discuss surgery for the enlarged tonsils, Aaron took off work and came with us to the ENT appointment.  Thank God!  I was completely floored when the ENT doctor told us his tonsils look great!  There is no need to have them out.  The problem is his tongue. Basically, it is too large for his mouth and is obstructing his airway.  There is a surgery to correct this.  However, it is a more involved process where they reduce and reshape the tongue.  It carries more risk, more hospital time, and a longer recovery.  Well, that was not in my plan, I don’t know which steps are coming next, and I have no idea what to even put on my list.  So I went home.  I crawled in bed. I pulled the covers up over my head and informed Aaron, after he found me, I lived there now. 

Apparently, the ENT Doctor’s visit was the point when Aaron and I stopped communicating to other people.  Not just friends, but parents, sisters, ect.  We have been fussed at by several people this past weekend alone for not telling them what we are now facing.  Honestly, we did not knowingly do this.  After we realized Tyler’s own grandparents were unaware of this unexpected turn of events, we have tried to go through our list and give everyone updates. 

We meet with the head of the cranial facial department on Friday.  I have intentionally refrained from doing any research on what we are facing. Today, after talking to someone who’s child had to have the same surgery, I broke down and did an internet search on it.  I stopped reading after the words medically induced coma and trache.  I may move back into my blanket fort after the appointment.  I put clean sheets and extra pillows on the bed, just in case.  Hopefully, we can get some answers and a better understanding of what our options are………so I can make a list. :)

The perfect family vacation (AKA The vacation from Hell.)

Have you ever noticed how some people put a spin on their lives when posting on facebook?  For example, their spouse could make them a bowl of Ramen noodles and they will post, "My true love made me a candlelight dinner."  Well, I decided to follow their example with our recent vacation.

After months of planning, our family left on a camping wilderness retreat into the mountains of Tennessee.  Aaron planned and packed what we needed and we spent the night before loading it into our van.  On Friday, we loaded the boys into the van and hit the road!  We stopped a few exits down from our house for breakfast and a fuel stop during which we decided we missed home already and turned around to drive by our house one last time.  Luckily, Joey had forgotten his blanket!  Once we made it back to the house, we decided it would make our family vacation even more fun if we took multiple cars and created a caravan to get to Tennessee.  After all, two cars mean we get to spend some individualized time with our boys- double the fun and double the gas!   Thank goodness our van's engine started to smoke as we pulled into the driveway.  Otherwise, our friends and family would have thought we were being too extravegant by taking two cars on vacation!

Can you imagine how excited we were to pull up to our campsite in the rain?  Aaron and I were so blessed to be able to show the boys the important life skill of setting up a camp in the rain.  Of course, we set up the awning first so they could have a dry, front row seat to watch their parents ' demonstration.  The campground preferred that it's campers cook on brand new grills and facilitated this by not having any dirty, ugly, germ infested grills placed in the campground.  This encouraged us to run to Walmart to buy a portable grill to cook on.  What a great addition to our camping gear selection!  When we returned to the campground, Aaron discovered the rain guard was actually acting as a funnel to create a beautiful water feature INSIDE our tent.  How blessed were we?!!!  Of course, the RV campers immediately became jealous.  I felt staying in such a beautiful tent set up would give the children a "entitled" attitude and we were feeling guilty not adding to the city's economic well being  so we instead challenged ourselves to beat the world record in tearing down a campsite.  That completed we set off to find a hotel for the night.  How fortunate that we picked the weekend of a huge baseball tournament to come to town?  The hotel we found a room in was amazing!  It was apparent customer safety was a priority to the management, because they had installed a security fence-complete with barbwire- to give the customer a warm fuzzy feeling as they entered the building.  Did we mention the clearly marked prices gave our boys a chance to improve their math skills? (# of customers x price of the room x # of hours + tax= ?) Aaron and I chose the hotel to complete the boy's survival training.  We congratulated the boys with pizza at a wonderful pizza joint and showers and sleep completed our magical first day!

We decided to start day 2 with a hearty breakfast at a cracker barrel where our waitress was running hard.  She didn't even have time to bring me coffee until the end of the meal.  I was glad the boys got to see such top notch service.  Afterward, we went to Ruby Falls. I am a bit claustrophobic, but the pink eye I woke up with really helped confuse my depth perception and the burning distracted me from my fear of being buried alive.  Our head full of life lessons and beautiful memories, we came home a day early.  We plan on spending the rest of the weekend recovering-I mean, relaxing as we relive the wonderful family togetherness in our minds.   

Meet Luke Skywalker!

This is Luke Skywalker.

Luke is the newest member of the growing zoo at our house.  

(To date, we have 2 dogs and 2 turtles.)  

The story of Luke Skywalker and how he came to reside with us is one of desperation.  The story began months ago.  Joey has been struggling with reading.  One day, we were in Petsmart getting turtle food.  Our trip to Petsmart is never complete without a look at the birds.  Tyler loves them.  Standing in front of the cage, Joey began his plea to have one.  In an act of temporary insanity mixed with an overwhelming desire to encourage his reading skills, I heard myself promise him one IF he started reading better.  The promise was quickly forgotten...

until yesterday.  

Joey strategically reminded me of this promise.  The kid is sly.  After reading a story to me, he smiled up at me and said,

"We need to get me my bird now."

I tried in vain to list the reasons we should hold off on the bird.  He countered all of my excuses with some kind of Jedi mind trick.  Before I knew it, we were standing in front of the bird display with a cart full of bird supplies.  My only victory to this bird buying excursion was refusing to buy him the $400 Conure.  He happily settled on the $20 parakeet (blue, not green) and after the sales lady explained these birds must be read to for an hour everyday (it is amazing what sales people on commission will do to make a sale), we loaded up in the van to bring Luke Skywalker to his new home. 

This afternoon, Logan and Joey wanted to get their new bird out of the cage.  I could hear them upstairs playing with it.  After a little while, I hear the following:

Logan: Wait, Joey!  He just flew under your bed. 

Joey: Do you see him?

Logan:  Yeah, He is way in the back I can't reach him.  I don't know how we get him out.  

Joey: Call mom.

Logan: No. Mom said she was absolutely not chasing this bird down to put him back in this cage.  Remember?

Joey: Oh, yeah.  What are we going to do?

(silence)

Joey:  Wait! I know!

I hear Joey tearing down the stairs and he starts running from room to room.  Finally, he comes to stand in front of the chair I am sitting in and sweetly ask,

"Mom, Where's the vacuum?"

 Yep, Luke Skywalker is a lucky, lucky bird.

(No birds were harmed in the Campagnone Petting Zoo today.  The Keeper of the Zoo retrained the animal trainers on bird retrieval)

Happy New Year! What are you going to do?

It’s that time of year again!  The TV is overloaded with commercials with diet products, dating sites, and ads for organizational products.   People are starting to realize bathing suit season is right around the corner and maybe eating the entire container of peppermint bark given to them by their sister (Thanks Tina!) might have been a bad life choice.  That’s right!  Resolution time is here!  I’ve long given up on the idea of serious resolutions.  I think being healthy and happy beats being a size 4.  My husband would probably be opposed to my dating.  Instead, I have come up with five New Year’s Resolutions I might be able to stick with.  Some are serious and some not so much:

1.       I will spend more time listening to my boys giggle.

2.       I will use the phrase, “AWESOME SAUCE!” more often.

3.       I will be a better friend.  Yes, I am busy with my husband and 3 kiddos, but I need to set aside time to call    friends more!

4.       Once a month, I will take a night for ME.  I will leave Aaron with the Kids despite the tears (from Aaron,       not the kids) and go shopping, see a movie, or eat out with friends.

5.       I will go on more dates with my husband!  He might be okay with me dating him!

What are yours?

Disney Surprise- Part 2

Animal Kingdom was the first stop on our Disney adventure.  Since it closes around 6 pm on Sundays, we decided to do it first.  We figured it would give us time to come back and unpack at the resort, go to the pool, and do some exploring!  If you've never been to the Animal Kingdom, think of it as zoo meets Disney. We took the safari rides, looked at the animals, visited the dinosaur land, and ate stir fry in the Asia section of the park.  We even went into the Finding Nemo show.  The boys hated it!  I thought it was okay.  It had music, dance, and puppets.  Apparently, everyone else felt it was twenty minutes of their life wasted! Honestly, they have no appreciation for the arts!

Around 4, we headed to the resort to unpack the car and get settled in.  We stayed at Port Orleans- Riverside.  The rooms were roomy and well laid out.  My favorite part was the curtain separating the sink area from the rest of the room.  As the only girl in a family of boys, this came in handy getting ready in the mornings!  The boys insisted on going to the pool when we were unpacked.  We did need a few things from the store for Tyler, so he and Aaron took off to go find the nearest Publix.  I took the others to the giant pool with a water slide.

We had Magic Kingdom on the agenda for Sunday.  There are very few moments I feel bittersweet about not having a girl.  Visiting the magic Kingdom is one of those times.  No matter how many times you beg, Little boys do not want to see the princess shows or visit the Bippity Boppity Boutique.  Oh well!  We did not get to about half the attractions because we had plans to meet our niece and her boyfriend for dinner.  We drove to Smokey Bones where our neighbor's son works and had a great time visiting with everyone!  No matter where we go, we can't get away from those Miller's!  Our plan was to go back to the Park for the fireworks.  However, we were all pretty tired after dinner so we decided to call it a day.  

Do you remember the Campagnone's plan their vacations around food?  Yep,  Our Monday at Epcot was planned entirely around dinner.  Aaron found this German Buffet inside Epcot when he was planning our trip.  He talked almost nonstop about it in the weeks leading up to it, made reservations way in advance, and planned our Monday around it.  So while Epcot is easily one of our most favorite parks, the decision to do Epcot on Monday was based ENTIRELY on Dinner!  

We entered the park and headed straight to our favorite attraction.  We love Souring!  It is a great ride that makes you feel like you are hang gliding.  I think it is easily Tyler's favorite ride out of all the parks!  Joey's favorite ride at Epcot was Mission Space.  He has talked about it at least once a day since we got back!  Logan loved the Phinneas and Ferb Secret Agent mission.  You pick up Cell phones as you enter the World Section of the park.  Then as you walk around the different countries, you get calls that lead you on a secret mission.  It is a big scavenger hunt and Logan had so much fun.  He even let Joey help!  All in all, it was a great day at Epcot.  And dinner?  It was pretty tasty.

On Tuesday, we went to Hollywood Studios.  We usually do not do this park because it doesn't have a lot for small children.  However, as I am CONSTANTLY reminded, my children are not so small anymore.  There are no more toddlers in our house and we entered the strange world of teenagers this past year.  Additionally, Hollywood Studios boast one other key attraction- Star Wars!  Our boys, especially Joey, are totally in for all things Star wars right now.  They thought the Star Wars ride was amazing.  Afterward, Logan and Joey built their own custom light sabers in the star wars shop.  Tyler chose not buy one of those.  Later, he did find an R2D2 that lights up and makes ALOT of noise he had to have!  Even I have to admit, getting a custom built light saber is pretty cool.  They also register them so if a part breaks, you can call up Disney and they will look it up and send you a replacement.  Yeah, like that will ever happen at our house.  :)

Since there are four parks and we had passes for five days, we decided to let the boys decide on the park for the fifth day.  Surprisingly, everyone wanted to go back to the kingdom.

All in all, it was a great trip.  We LOVE Disney. (Yep, we drank the kool-aid!)   The employees honestly try to make the experience as wonderful as possible.  No matter how many times you visit, there is always new secrets to discover.  They also give us a handicap pass for Tyler so we skip the lines!  It wasn't super hot when we went which was a bonus and the crowds weren't too bad.  Is it too early to start planning the next trip?  

Disney Surprise- Part one.

It has been a hard secret to keep.  I slipped up a few times.  Aaron and I took the boys on a surprise trip to Disney World over spring break.  We have been to Disney a few times.  It is really a magical place, especially if you have small children.  It is work to get there and it takes some planning, but it is totally worth it.  This trip was different because of the amount of time we had to plan.  We decided to do this last month so four weeks is all I had to get things in order.  I know there are families who can pick up and go on vacation on a moments notice.  Having a special needs child and a planner mom prohibits us from this. We booked online, but called to make sure we had a ground floor room and a fridge for medications.  Then, the frenzy began.  There are several things I do before we go to Disney to save on money.  Buying Disney items in the park always cost  more.  The first thing I did was make the boys autograph books.  The run you about $20 each in the park.  $60 was more than I was willing to spend on that item.  A trip to the dollar store for notepads and pens and a little hot glue was all I needed to make some pretty cute books!  I even attached the pens to them by a ribbon so we didn't have to dig around to find one!              

I also stock up on glow sticks.  The kids always beg for these when we are at the park at night.  Another Dollar Tree run provided them with plenty of glowy fun!  We bought the boys pressed penny books a few years ago.  Genius!  It provides the kids a keepsake everywhere we go.  The love to hunt for the machines and collect pressed pennies.  Aaron made a trip to the bank for a few rolls of quarters and pennies.  We put them in an candy tin where we could easily reach them whenever they were in demand.

 Last time we vacationed at the magic kingdom,  Logan asked about the trading pins.  These are pins usually worn on a lanyard around your neck.  You can collect them and trade them with others in the park.  The pins cost anywhere from $10- $200 a piece.  That is more than I wanted to spend last time in order to let Logan "try out" this little hobby.  Especially since I knew they would end tossed around and lost the week we got back. A couple weeks before, I looked on Ebay, bid, and won a lot of 30 Disney trading pins for $9.  BAM!!  I took my trusty mom van to Walmart, bought some Disney ribbons, and made the boy's each a lanyard.  Then, I divided the pins and packed them away.  I am so glad I did.  Logan and Joey had a great time running to the Disney cast member to trade pins.  (It is the week after Disney and I have no idea where they are right now. The pins, not the boys.)

I know some of you are thinking, "Gosh! She sure is thrifty!"  Don't worry!  We still spent the fun money!  The boys got a few big treats at the park.  I just tend to get the smaller things that can eat up what we budget for spending money.  Speaking of budgets, I could go on and on about the little system my incredible husband uses when budgeting our money for vacation.  Yes, it keeps us on budget.  Yes, we always have the money we need when we need it.  Yes, we usually have money left over because of this nifty little system.    What is it?  All I am going to say is it involves ALOT of little envelopes and a very complicated organization method.  I hate those envelopes.  I know it works, but it makes me CRAZY!  (Apparently, Aaron shares this enchanting method of budgeting with his sister- must be genetic.)

I chose to pack everything in 2 huge storage bins, instead of carting 5 suitcases.  It saved so much space!  I did pack an overnight bag with a change of clothes for everyone so we didn't need to unload the van for the first night since we would be stopping to get a hotel room on the drive down.  I also brought along our handy dandy backpack to carry when we went into the parks.

After days of anticipation, the time had arrived.  The van was packed. The boys thought we were just going to drive to the beach for a few days.  They have lived with us their whole lives so they thought nothing of their dad packing up a billion envelopes (GRRR!) or their mom checking things off of her huge checklist.  I had packed the glow sticks, trading pins, and autograph books in a gift bag without them knowing and it was hidden away in the back.  Movies for the trip and a cooler full of drinks were in the front and we hit the road!  I love traveling with Aaron.  Driving allows us a moment to talk bout things going on in our lives, to discuss current challenges we are facing, and to dream about the future with minimum distractions.  I think I may look forward to that aspect of the trip more than the actual destination.

Traffic wasn't too bad and we made it to a little town about 20 minutes away from Disney Friday night.  We stayed at a hotel that I am pretty sure we had to cross a time vortex into the 80's to get to.  It screamed 80's decor down to the wood panel Lounge where we ate breakfast the next morning.  However, it was clean and convenient.

Saturday morning, we got back into the van and headed on our way.  We had informed the kids we would be traveling through Orlando on our way to the beach. Tyler figured it out first, I think!  As soon as he saw signs pointing the way to Disney, he started bouncing up and down in his seat with a huge grin on his face.  Turning back to him, Logan sarcastically commented, "Sure, Tyler, sure.  Mom and Dad are taking us to Disney."  Turning to Joey, I said, "Did you hear what Logan said?"  Logan's head jumped up in amazement and he screamed, "Really?!! We are going to Disney?!!"  I certainly love surprising my babies!  Even better, we got the whole thing on video!  Aaron ran in to check us in and I gave the boy's their gift bag while we were waiting for him to come back;

(To be Continued.........)

About Court....

The following was written by my husband:


The following is very long, and boring, and sad. I wrote this the afternoon after we got the verdict, while I sat in the bedroom and tried to process everything. It jumps around a good bit, and it leaves out lots of stuff that may make it hard to follow. Sue me….haha! As I have just found out, the odds are you will lose!
As many of you may know, my family and I have spent the last week and a half in court. After 5 long years, we finally had our chance to present our case in my mother’s wrongful death lawsuit.
We are NOT the type of people who would sue without good cause, and this was never about the money for us! I say that not to sound superior or to justify, but because it’s the truth, and those that know me and the family know we struggled for months before we made the decision to go forward 5 years ago. We were very lucky to find Brandon Taylor. From day one, when we contacted Brandon he was up front with us that this was a long, uphill battle. Through the last 4 ½ years of depositions, meetings, and finally court, I can say that I have not found one single point where I have disagreed or thought Brandon had done the wrong thing.
When mom passed away suddenly in April of 2008, we felt very strongly that she did not receive the correct care in the hospital. If you come into the ER for very bad flu, and they find a VERY low blood pressure and decide you need to be admitted to MONITOR that pressure, you would assume that part of that care would be the monitoring part! This lack of care led us to research (and eventually contact) Brandon. Over that first year, we had a number of meetings and conversations with Brandon and learned a lot about what actually went on over the 36 hours mom was in the hospital. As more and more details were revealed to us through the medical records and then depositions, it became clear to me that we had made the correct choice in pursuing this.
As I discovered as this process wore on and on, the legal system moves very, very slowly. It took over a year to get all the medical records, and it was into the second year before the first depositions were taken. We then had about a year where nothing really seemed to be taking place. In reality, Brandon was researching, finding expert witnesses, taking depositions on them, and doing even more research. It was not until March of last year when it seemed that real progress was being made. In March, everything was completed and the initial motions, and filings were brought to a judge. At that point, we were directed to take part in a court ordered mediation. We had the mediation in May of 2012. We all thought that that would be the end. Again, we were not looking for millions of dollars, we were looking for admission that there was something done wrong. To us the evidence was clear, and we thought they would offer a number, we would argue, and eventually settle. Unfortunately, the defense had no intention of settling. They did not TELL anyone this, and allowed our lawyer to hire a very well respected mediator, and have Tina come up from Florida for the mediation, only to sit in a room for about an hour while the mediator discovered they were only there because the judge said they had to be!
With mediation behind us we had the court date set in late summer. Feb 11th 2013. We thought that was it, sit back and wait for Feb. Well, as with everything else, we were wrong. There was a sudden phone call from one of the attorneys wanting to see if we were open to a settlement, but that never actually went anywhere….though it got our hopes up!! Then 2 weeks before trial, the hospital lawyer called and decided they DID want to settle, and we ultimately took the offer. The offer was not very much but in our minds it was an admission of guilt. The settlement removed the hospital and two nurses from the lawsuit but still left the two doctors to be resolved. This brings us up to the actual trial.
This last week and a half has been one of the most horrible periods in my entire life. Having to sit in that court room and relive that 36 hours in exacting detail all over again was very hard. Tina summed it up well with her comment that it was like ripping off a band-aid that had just started to heal. Over the last 7 days of actual court proceedings (we took off a day due to schedule issues) I had to listen to “experts” say that mom was ELDERLY (come on, no one who knew her would use that to describe her!!). I also heard how she was basically dead the second she came into the hospital, that the “die was cast” as one witness put it. I listened to the defense lawyer blame everyone NOT in the case….the nurses (who the jury did not know settled) the ER doctor, the grand kids. Yes, that is right, Tyler, Logan and Joey were the cause of moms death. You see she ultimately died of a viral infection of the heart muscle. It has a name, and I can pronounce the name, but damned if I can spell it….myocarditis is phonetic at least. In any case, the lawyer kindly pointed out in mom’s medical chart under her patient history that there were no other sick people in the house, but that her grandkids had been sick with a viral infection the previous week, and that may be where she got her flu. So, what really happened is she went to the ER because she thought she had a really bad case of the flu. When asked if there was anyone else in the house who was sick, she said, no, but my grandkids had the flu last week, and maybe I got it from them. If that one was not hard enough to sit through, there was more to come. I got to hear testimony from the doctor who was on duty overnight say that “no, he did not recall Gloria Campagnone, she was not remarkable.” He didn’t say this once, but multiple times, over and over when asked questions. Of course he did not see her once in his entire 12 hour shift, but what can you expect…she was after all “not remarkable” I managed to sit through all of that, and not once did I utter a single sound. I am very proud of the fact that at no time did the judge have to caution me or anyone else in the family to not disrupt court. I wanted to….I wanted to stand up and yell, and scream and punch the wall, but I did not. As the witnesses finished up, and we were left with closing arguments, I thought that we were done. There would not be any more lurid details of moms last moments, (She was conscious that morning and responding to verbal demands as they intubated and put in a central line) there would not be any more doctors blaming everyone else they possibly could. I was wrong. As the defense made its closing, and the lawyer walked through the record one last time, he brought up a point that he wanted to highlight. I am going to quote it as best I can, the words may not be 100% correct but the intent is there, and if Tina, or Alan read this, correct me if I miss speak.
“No one could have known on April 5 or April 6 how ill Mrs Campagnone was. After all, we heard from Mr Campagnone (Dad) that they were still planning on leaving town the day following her release. We heard from Aaron Campagnone, when he visited her in the ER, and brought lunch that she looked tired, but he felt OK to leave. In fact, he called and spoke with Mr Campagnone that evening and did not feel it necessary to return to visit her that night”
Up until that point, I was impressed that while the defense lawyers were obviously the “enemy” both of them had been professional and did their best to limit themselves to making the case, and not saying anything negative about us. I do not recall ever being angrier with a person and not being able to confront or deal with that person…ever! Fortunately for that lawyer, and for me ultimately we had a good 2 hours between that comment and a break in the proceedings. By that point I had myself under control and was able to walk out of the courtroom without assaulting him or making any comment to him. (again, those that know me well are probably VERY surprised that I was not in fact in jail for disrupting court!)
After 4 hours of deliberation Tue until 10pm and then returning Wed and deliberating another 3 hours, the jury did finally come back and found for the Defense. This was not overall a surprise to us. We knew it would be difficult to win in court, in this county. We didn’t go into this with blinders on, and Brandon was very up front with us that this was a long shot if it went to trial. As we left the courthouse, I was in disbelief over the outcome. I could not see how we did not prove the case, and just didn’t understand the verdict. Brandon stayed in the courthouse and cornered a couple of jury members that were still there to get their opinions and a better understanding of what happened. As we waited outside for Brandon to emerge, we were approached by the judge. He said he is not allowed to comment on any ongoing case, but now that it was over, he could offer his condolences etc. I will leave the rest of his comments out of this, but what he did say did help and bring me some closure. Brandon finally emerged with 3 of the jury, and the other lawyer from the defense. (not the one I wanted to physically assault) As Brandon stood with the 3 jury members, the defense lawyer slowly made his way across the parking lot to where Tina, Alan, dad and I stood. I have no doubt that that was one of the longest 20-30 yards that gentleman had ever walked, and I will give him full credit for making that walk!! It took huge balls. I can’t honestly say I could have done the same in his place. All through the trial, this particular lawyer was tasked with questioning the medical experts. His style tended to be long winded and he liked to go over the records and medical charts line by line by line. To say I did not really like the guy is an understatement, but again, he gained my respect and then some by making that walk. He extended his condolences and wanted to apologize if he said or did anything in the trial that we thought was inappropriate or disrespected moms memory. He truly did not, and I appreciated that he came over. Tina asked him a question, and again, I am not sure of the wording, but here is the essence of what she asked. The main doctor in our case had stated in his testimony that since mom, he had spent extra time trying to look for that mistake he made, trying to prevent another mom from happening. So much so that others noticed he was spending an unordinary amount of time with patients and on rounds. Tina asked the lawyer flat out if that was true, if in fact this doctor really had made that effort, and if he had changed. The lawyer said without hesitation that yes, his testimony was truthful and sincere.
This more than anything else since the verdict has helped me make peace with what has happened. Funny that the guy I had more respect for over the course of 6 days blew it on the 7th, and the guy I genuinely disliked for 6 days provided answer to what I needed to hear the most. We didn’t win, but we got what we wanted, a change to the mistakes made that day with mom. No, there was not some huge payout, which is what the insurance companies understand, but I think that maybe, just maybe there might be others out there who are still alive because of the lessons learned by this doctor because of his lack of care for mom.
Ultimately after talking with Brandon, it looks like the jury did think there was a lack of care, but that it was not to the level of it being negligent in a legal sense. We will have to agree to disagree on that one.

Blog Therapy

Next week is a week we have waited for and dreaded for a long time.  I am excited to see my sister-in-law.  I am dreading the reason for her visit.  Next week, we go to court.  Those who know my family know we are currently involved in a wrongful death lawsuit.  Let me start by emphatically stating we are not a family excited about suing, we are not out to “get paid”, we are not looking for revenge.  The decision to sue is one we struggled with. In the end, we decided this decision may help others in our community not have to endure the hell our family has had to go through. The lawsuit involves the untimely death of Aaron’s mom.  I won’t go into the details right now.  Mistakes were made.  Truth was covered up.  There was lack of care.  

It has been five years.  Our family has been on a roller coaster.  Hopefully, next week will bring us some closure.  I am dreading court.  I have tried not to remember the day Mom C died for a long time.  The events of that horrible day are too painful.  Can you see why I dread going to court?  I do not want to relive those memories.  I don’t want to hear excuses.  I don’t want to listen as our lawyer tries to put into words what was taken from us.  How can you explain the horror of listening to your five year old beg God to let his grandma live as you race frantically toward the hospital or the heartbreak of sitting on the kitchen floor trying to calm down your special needs nine year old because he just found out his grandma is gone forever?  How can you accurately describe what my baby missed out on because he will never know his grandmother who loved him so much the first few months of his life or of watching your strong husband completely fall apart?  How can you express what was so carelessly taken from us- a wife, mother, grandmother, and friend?  Each member of our family has their own story of that day, of when they heard the news.  The most horrible part about it is it did not need to happen. We shouldn’t have these stories, these memories.  

Pray for the Campagnone’s and the Arceneaux’s as we face the heartbreak next week.   

I Have a Dream!

For Stephanie-

Usually, Steph, I do not record my dreams.  However, the one I had last night was so strange!  Get ready….Here goes!   

You, me, and Matt were at your house in Belmont Farms.  We decided to go to the store.  It was a very pretty day, very sunny and warm.  We decided to ride our bikes to the store, instead of driving.  The only problem is there were only 2 bikes and three of us.  No prob! Matt found a small scooter (kick powered, the ones smaller kids ride) and decided to ride that.  So, there we are, riding our bikes down the street- Matt beside us looking utterly ridiculous kicking off on the little scooter.  We ride for hours.  Finally, we arrive at a small gas station and stop to ask for directions and buy water.  

Let me stop here and ask the obvious questions.  Why were we riding for hours to get to a store if our ride originated at Belmont Farms?  Why couldn’t we just get what we needed at the gas station?

Anyway, the clerk tells us the nearest town is twenty miles away.  Twenty?! !  We eventually complete our journey.  The next thing I know is we are sitting in a courtroom because YOU have decided to sue Mother Nature.  Your argument?  1-She conned us into attempting a bike ride by creating such a beautiful warm, sunny day.  2- She made natural landmarks causing developers to build the store too far away from your house.  In my dream, I am standing up with you in the courtroom even though I am obviously embarrassed by your ditziness.  (We have known each other since Junior high, I can call you ditzy! We all have our moments!)   Matt is sitting on the first row with his head in his lap trying to not be noticed by the news media which have gathered to report on this landmark case. 

The poor bewildered judge looks at you and asks how you expect Mother Nature to pay if you win this case.  You calmly reply, “Your honor, which is why I am also suing the Department of Forestry, Department of Agriculture, and the Department of Parks and Recreation!”

 Did I say ditzy?  I meant GENIUS! Oh, and my lawyers will be calling you.  I am suing the company who makes Nyquil because I took a dose last night.  I am absolutely sure it caused me to have such a disturbing dream!  Love ya, girl!