Korissa's ~MAGICAL-AMAZING~ 10 day MAW/GKTW Adventure!! Discovery Cove day started
My name is Kris and I have 5 kiddos. I have been married for 21 years to a wonderful guy named Scott. Kids are...Kerri-19, Korissa-17, Kyra 15, Steven-11, and Kylee-7 1/2. Kylee and Korissa both have a disease called Mitochondrial Disease. Since we have the maternally inherited form all the kids and myself have it, but it's Korissa and Kylee that have it the worse and unfortunately..Kylee got the worse out of all of us.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infections
As of right now..theirs is no cure...
Korissa was born on Oct.27, 1993. She was born at 39weeks, but was really small. She weighed 6lbs 1 oz. She was always a sleepy baby and had a weak suck. Ped couldn't find anything wrong with her. At her 6 month checkup I brought her in because she had an upper respiratory infection and an ear infection. This is the time the Ped found a heart murmur. We were referred to a Cardiologist. This is were we found out she had an Atrial Septial defeat. He told us with this type of defeat..Korissa wouldn't see any side effect. This wasn't true. She was always had blue tinge lips and slept a lot. She would wake up at 8am...take a 4 hour nap, and then be ready for bed at 7pm. She was hospitalized many time due too upper respiratory infection/pneumonias. She also has had many medical procedures and surgeries through her years. Her biggest surgery was when she was 2. She finally had her open heart surgery to close her hole in her heart. The Cardio thought the hole was a size of a dime, but it turned out to be a size of a Quarter. Korissa had some complication and had to go back to the OR and redo the patch...which met going back on the heart lung bypass. She spent 2 weeks in the hospital. From age 2 too now she has had a lot of issues she has been dealing with GERD,Ptosis, developmental delays, Fatigue issues, heat/cold intolerance and is sick at least once a month with high fevers and colds. Next post will tell how we found out about Mito...
Here's a family picture..
Kerri was unable to go with us(collage), so Korissa and Kyra's friend Ashlee came along.
How we came to Mito.
Kylee was born 6-18-03. From the moment she was born we knew she had problems. They had to take her straight to the nursery due to junky lungs. They tested her blood sugars and found it to be 21. They immediately gave her a bottle of formula to bring it up. Four hours later I finally got to see her. I tried breast feed her, but she was still throwing up formula she had 4 hours prior. The nurses took her back to the nursery to keep an eye out on her. They gave her some soy formula but she threw that up too. I had my tubes tied the next day and while I was in surgery Scott noticed that she would do these little jerky movements, but he just thought she was cold. We were discharged 48 hours after delivery. She developed jaundice and so she was under photo therapy for 5 days. We kept seeing these jerky movements, but thought they were just baby movements. When she was 3 weeks old she had this long movement and I really couldn't wake her. I called the Ped who immediately admitted her. They ran a lot of test(mostly for her reflux). it was confirmed she had severe reflux. The next day we were released from hospital so we can go see a Neuro(we don't have a Ped Neuro in town. They did an EEG and it was confirmed she was having seizures. She was put on Phenobarbital(sp). After about 20 seizures..she had stopped having them at 2 months.
Also at birth I noticed she had a droopy eyelid. For her first 23 months was nothing but hospitals and medical procedures. She wasn't gaining weight, still had her reflux, and many more issues going on. At age 23 months she had a G- tube put in and a Toupet FUNDO done. In total she has had 12 surgeries and countless medical procedures. Her last surgery was last April and she had a Roux-En-y. This is a separate J tube.
No one could figure out what was wrong with her. She was seeing Neuro,GI, ENT, eye specialist, urology, Ped. It came to my attention to look into Mitochondrial Disease. I asked her GI about this and she was on the same page. First we did a MtDNA and that came back normal. The next step was to do a muscle biopsy. This is were we were told she had defects in complexes III and IV. She was 5 years old. It took 8 long months but we finally were able to see a Geneticist(Mito specialist). It was here we discovered that she has a maternally inherent form of Mito. I have had issues all my life. I was always fatigued and sickly. I also had developmental delays. In Jan.09 I started having heart issues and in July 09 I had a pacemaker put in. Than this year I'm starting to have lung issues and is on 02 at night. Here's a run down on all of us...
Heart issues-Atrial Septial defeat-Brady
Can't tolerate the heat
chronic high fevers and
restless leg syndrome
Surgeries... 3 ear tubes, ASD repair,and 4 Endoscopies
Kylee... Severe motility issues
FTT (she weighs 37 lbs now)
Severe constipation issues
Fatigue issues..muscle weakness
Can't tolerate heat/cold-she has to wear a cooling vest at anything above 80 degrees
Ptosis (surgery to fix in 07, but still droops when fatigue)
Neurological issues...abnormal EEG and MRI
main nutrition is through her J tube(Roux-en_Y)
Surgeries... Toupet FUNDO, G Tube placement, 2 Ear tubes, Ptosis (eye) surgery, Pylorplasty, Muscle Biopsy, 5 Endoscopies, and Roux En Y (separate J tube)..and countless other medical procedures.
Kerri- Thankfully only a couple minor things
Kyra- again...thankfully minor
Steven..... ADD or ADHD
very tight knee and ankle hamstrings
Me.... Chronic fatigue
Tachy- Brady syndrome (pacemaker- meds for tachy)
02 drops to 85, so on 02 at night
Can't tolerate cold
Severe restless leg syndrome
low blood pressure's(70s over 40s) on meds for that
I guess that's our crazy story......
Table of content
Sunday..March 13, 2011
Day 1...Getting to Florida!!!
Day 1 continued..Meeting our GKTW Greeter and heading to GKTW!!
Monday...March 14, 2011
Did we make our Orientation???..Heading to DHS
Day 2 continued..
Day 2 continued..
Jedi Steven!!..The end of our day
Disney Hollywood Studios photo passport pictures.
Tuesday...March 15, 2011
Disney World Day..Will we have a disaster????
Will Kylee be a Princess...Why yes of Course.
Enjoying the rest of the day at Disney World..
Continuing our day
Our last part of the day:(
Photo Passport pictures
Wednesday...March 16th, 2011
Epcot day!! Feeling like VIPs..
Yep...we were VIPs:)
Getting to meet 2 very special people.
Meeting the Fairies..off to the World Showcase
Pick A Pearl...The rest of our day
Thursday...March 17, 2011
Sea World Day!!!
Shamu's ~Believe~ Show
The rest of our stay at Sea World
Christmas at GKTW
The Star is shining bright
Professional pictures taken while feeding the Dolphins at Sea World
March 18th, 2011
Busch Garden day!!!!
Tiger and Giraffes..oh my
Elephants and more rides..oh my
Our last part of our day at Busch Gardens:(
March 19th, 2011
Our last breakfast at GKTW and pictures inside of our Villa
Korissa's star and saying our goodbyes to GKTW :(
Arriving at Island of Adventure
The Wizarding World of Harry Potter
The rest of our day at IOA
Our new home for our rest of our trip in Florida
March 20th, 2011
Fun in the sun
More...Fun in the Sun
March 21st, 2011
Universal Studios Day!!
The rest of the day at US!!
March 22nd, 2011
Discovery Cove Day!!!
Having fun swimming
Sting Rays and Fish oh my:eek:
Wishes does come true...thanks to our ANGEL
Doing tricks with the Dolphins is fun
Discovery Cove professional pictures
Family pictures with the Dolphin
Last part of our wonderful day
March 23rd, 2011
The Orange Juice that could be an explosive and the end of our 10 day MAW adventure.
Non trip pictures..
Mitochondrial Disease Video made by Kyra and Kerri
The wonderful special gift from Lynn
Day 1..Getting to Florida!!
Our day started out early. We had to get up at 5:00am. It wasn't hard to get the kids up though. I had kept a secret for 5 months that a Limo was picking us up..or I had thought I did. I guess I left a text message open and Korissa saw it. She didn't see it until the last week, but we kept talking about a Shuttle, so she wasn't a 100% sure. The limo was suppose to be at the house at 6:30am, but we got a call at 6:10am that he was here. We weren't quit ready yet so he just waited outside. Steven looked outside and saw the limo. Can I say we had some very excited kids. They were all hoping we would get one.
Picture of family by the limo...MAW shirt were made by Chiara(disname..cegero)
Kids with John..our limo driver.
We left the house at 6:40am headed to LAX. Our flight took off at 10:30am for a long 4 1/2 hour flight.
Kids in the limo...
The kids set in for a 1 1/2 hour drive to LAX
We actually got to LAX in record time. I guess most people are asleep at 7-8am on a Sunday morning. We got to the airport at 8:25am and we unloaded all of our luggage(9 carry-ons..1 check in, and a big stroller) and headed to security. This was my biggest concern. We had 2 suitcases full of medical supplies...Kylee wearing her feeding backpack, and my pacemaker. Thankfully everything went pretty smoothly. I went through the body scanner and Kylee got a complete pat down. She took it in stride. They had to swab down her feeding backpack and then she was cleared. What was a pain in the butt was they took out every formula boxes(Neocate Splash), Pedialyte, and Prune juice out and swabbed everyone. I had 45 formula boxes, 12 Pedialye juice boxes, and 12 Prune juice bottle(the little Gerber ones). Thankfully they did it quickly, but than we were left to put everything back in suitcase. We finally got to our terminal at 9:15...just in time to grab some Mc Ds breakfast.
Waiting at our terminal eating a lite breakfast
Kylee had an OJ for breakfast. This OJ will come back to story at the end..
Steven waiting for the plane to arrive..
Finally at 10:00am the plane shows up..
We all boarded the plane at 10:20.
Scott and Steven sat together
Kyra and Ashlee sat together...Korissa wanted to sit with me..
Kylee and Korissa with me..
At 10:35am we finally started backing up..
Kylee making sure she knows what to do in an emergency
Kyra's reaction on take off..
Views on take off..
The Long Beach Ports. You can see the Queen Mary. I had no clue I even took this.
Next post..we meet our GKTW Greeter..
Day one continued.. Meeting our GKTW Greeter
So last post we had just landed in Florida. We landed at 6:15pm. Not too far off our suppose to be 6:06pm landing. Oh...I forgot to mention that they checked in all our carry on luggage for free(first pixie dust). I guess they saw how many we had at LAX and they asked if we wanted to just check them in. We said yes so we didn't have to fit them all on the overhead on the plane. That was a huge relief for us. I also forgot to say we got our second pixie dust on the plane just before we landed. The Flight attendant saw we were on a MAW trip and asked if we wanted some snacks for our days at the parks. I said sure and thank you. She comes back with 2 huge bags full of Peanuts, cookies, candies, and pretzels. She than asked if we like wine. I said sometimes. She went back and got Scott and I a bottle of white wine. Unfortunately..we didn't have time to drink it, so we left it at our second place we stayed at. We just couldn't fit it in our luggage. The snack came in handy for all the parks.
Back to the story.. We get off the plane and head to the restroom. After that we make our way to the Monorail to get us to our GKTW Greeter and luggage. We get out of the Monorail walk a little bit and there he was..our GKTW Greeter. This is were I'm bad. I didn't write down his name...ugh.
Our wonderful Greeter.
He took us to get all our luggage and then took us to our rental Company..Third pixie dust...MAW paid for our extra days of our rental.
While I was waiting for Scott to do the rental agreement this Squirrel came right up to me. I though it was going to jump on me.
Kids waiting to get the van..
Finally..we were on our way to GKTW. Now.. they give you direction to the village, but Scott brought the GPS with us and had already put in the address. What he did forgot was to change the no toll road settings. It actually took us a shorter route and we didn't have to pay a cent. We got to GKTW 7 min. before we were suppose too.
This is what we saw.. Sorry a little blurry
We are here!!!! Eight months in the making
We parked and went in the House of Hearts. They were all ready for us. They handed Korissa a Mickey Mouse and the other kids got a Shamu.
Kylee had me take a picture of her on the rocking horse. She remembered this from her MAW trip and just loved riding this.
It was time to go see our Villa. Steven, Kylee, and Korissa went with the volunteer(again...didn't write down her name) in the golf cart as the rest of us follow in the van.
The family in front of our Villa. We were in the new part. We saw them building these during Kylee's Wish Trip.
We go in and saw this..
We unloaded our stuff and head to Katie's kitchen. By this time it was 9:00pm and we were all starving. We were standing by Katie's kitchen and saw this...so sad
It was a little chilly out so we went in the ice cream place and ate dinner.
After dinner we of course had to have some ice cream
We finished up dinner and our dessert and headed back to our villa. We get everyone situated and showers a going. After my shower..I started my nightly ironing for our clothes for the next day. We all get to bed at 12am.
Next post... alarm clock didn't go off...Did we make it to Orientation???
Oh my gosh, I LOVE all of the pictures!!! You have been a busy lady and everyone looks SO happy!!!! I can't believe I am the first one to sign...that NEVER happens!!!!
Wonderful pics so excited :yay::yay::yay: you started your TR.
Yeah Kris! I found your trip report! Great start and all the pixie dust you got even before getting to GKTW! Love all the pictures and details.
Oh no! Such a late night before bed and time change too! Hope you wake up in time for the orientation!
Great start. What fab pixie dust on the plane that was so nice of the flight attendant to give loads of snacks :)
Wonderful pictures & it sounds like a great start for the trip. Can't wait to read the rest.
:yay:You started :yay:
I can't believe how long it took you to get there :eek: That was a long day. Love the pictures :cloud9:
Your kids have melted my heart. I am so glad yall got 2 MAW trips. I have a friend whose son has this diagnosis also and I told her to check into contacting their social worker to get a MAW trip. I hope she will do it.
:cool1: Yeah you started. Great pics.:goodvibes
Woohoo for the TR!!
What a great start to your TR, can't wait to read more!!!!
Can't wait to read more..:banana:
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