Saturday, March 21, 2009

Making Memories at WDW: A trip report Day 1

We're BACK.... from Disney that is. Ahh! one of my favorite vacation destinations this place is, and it is so great to share it with my kiddos. I have been a long time fan of the Disney cartoons. Even when I was in high school I had a collection of movies (still have all the VHS). My first trip was when I was 16 years old. Even though it was in the heat of the summer, I had a BLAST!! I finally talked Andy into going with me about a year after we were married. He reluctantly agreed, and he ended up loving it as much as I do. If you have seen us, you can guess that we are not "beach" people too much. We both love the ocean don't get me wrong, but I am fair and Andy is even fairer, which equals frying on the beach. I do love to relax and read a good book by the ocean, but with little kiddos that is in the past for now. Andy on the other hand could care less, and would rather go, go, go. So Disney is the perfect choice for our vacations. I was so excited because Disney was running a special: buy 4 days and get 3 days room and tickets for free. We saved a ton of money this way, and in January Andy asked me if I might want to go on Spring Break this year. I was reluctant at first b/c I have heard many horror stories of the crowds at Disney during Spring Break. I decided that even with those crowds we could still have a good time, and we booked our trip. Thus our first Spring Break Disney vacation. So as usual me being the "nerd" that I am, I delved into the planning. There is so much to learn about before you go so that you don't end up waiting in line for endless hours or missing things because you had no idea about them. So if you decide to go, I urge you to do your homework. You won't be sorry. I was hopeful that we might miss most of the Spring Break crowds since Easter is in April this year. I was kind of wrong about that one, but we had fun just the same. So without further delay come and join us for our trip down Disney lane!

Day One: In the past we have flown to WDW, but this year we needed so much stuff with Evan. Also plane tickets were very high, and there were no direct flights so we made the decision to road trip it. I packed for three weeks- literally. I had a pile in our bedroom and kept adding to it day by day. I packed myself, Tristan, Tyler, and Evan. Andy had to fend for himself. We decided to pull the kids out of school on Friday 3/13 and head down to Florida early. We left the house around 4:30am. We had to stop at Walgreens before we left Knoxville. Ty ended up getting the flu the Monday before we left. We had a tote bag full of medicines we were taking with us, as well as us all being on Tamiflu. God was gracious and allowed us to enjoy our trip without any illnesses. Praise the Lord for that one. This is what we had to pack into the car
Gramps let us borrow his GMC Denali for the ride down, and amazingly all of this stuff fit. It was pretty packed in there though. That red Vera Bradley bag has our "drug store" in it. I am laughing now at all of the Vera Bradley bags. Looks like I could open up a shop. So as I was saying, we left around 4:30am. I thought the kiddos would fall asleep right away. Yeah right! Tristan, being just like me when I was that age, was so excited she couldn't stand it. She wound up sleeping maybe one hour the whole ride down. Ty and Evan did eventually fall asleep for a little bit. So here we are at the beginning of our journey
Andy loves it when I take pictures- can't you tell?







Finally, Evan and Ty are snoozing. Notice Tristan in the back- WIDE AWAKE!

If you will notice the danger zone in the middle of the car. I am thankful for no sudden stops or we could have all seriously been hurt by flying debris. The trip started well but once again Tristan, being alot like me, got car sick right before we stopped for breakfast. We pulled into Cracker Barrel parking lot and she climbed into my lap in the front seat just sweating away and pale as a ghost. She never did throw up, but boy do I know that feeling. We opened up the Cracker Barrel at 6:00am and had a yummy breakfast. Tristan was feeling much better at this point. So we all made our "pit stops" and it was back in the car. Andy drove past Atlanta, where he tells me the traffic was horrendous. I wouldn't know on this one because I had the head bob/open mouth thing going on. We were all snoozing away. I drove for a little bit from past Atlanta until right about Valdosta, Ga. while Andy caught his snoozes. The kids by this time were into watching their movies. Evan was still doing good too, and was playing with some of his toys. We made pretty decent time to Orlando. We stopped some along the way at rest areas to stretch our legs a bit. I found out the hard way that Evan has a touch of car sickness too. I fed him a bottle while we were driving, and the next thing I knew it came right back up. So now his car seat was soaked with milk and our car kind of stunk. We were about 1 1/2 hours away. We cleaned Evan up and off we went. We made it to Orlando in about 12-13 hours. We checked into our resort- Disney's Old Key West. Then we unloaded the car and unpacked. Once that was finished it was off to explore the area. As we were walking it was kind of breezy that evening. I looked down and saw something hanging out of Evan's mouth. It was a leaf that had blown into his stroller, and he had put it inside of his mouth. Next thing I knew he tried to swallow it and ended up throwing up his peaches from supper all over his stroller. There is not much that child won't put into his mouth. So back to the room we headed for clean up and bed. It had been an eventful day for sure. We headed to bed so that we could get up early and go to the Magic Kingdom for day 2.
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Ty's birthmark

Ty's birthmark
Ty before laser treatments

Tyler's Birthmark

A port wine stain (PWS) is a congenital birthmark that affects approximately 3 out of every 1,000 people. They are most commonly found on the face and neck, but they can be found elsewhere. The underlying dilated blood vessels cause the red/pink color of the PWS. When Ty gets upset or hot the blood flow to his face increases causing the birthmark to appear redder. When Ty is colder and the blood flows away from his face the PWS can appear invisible. If left untreated, the vessels may become enlarged and elevate the skin causing the surface to take on a cobble appearance. Sometimes the PWS can also develop into a deep purple color. Occassionally, the vessels can create overgrowth causing the area where the PWS is to become larger than normal.
PWS are present at birth and usually clearly visible. PWS grow with the person and never regress. The problems of PWS can now be treated by laser.
With different wavelengths a laser beam can be made to react upon materials of only certain colors and densities. The laser is tuned to only affect the darker more dense blood vessels deep in the skin that cause the birthmark, leaving the lighter less dense outer skin with minimal damage.Unfortunately, at this time, most people do not see complete removal of their birthmark by laser treatments. 10%-15% of those treated see 75%-100% fading, 70%-80% see 25%-75% fading, and 10%-15% see 0%-25% fading.
Treatments have a better chance of being effective when a person is still young. The skin is thinner and the mark is smaller. The skin has also not been exposed to the sun as much on a young infant or child. The sun thickens the skin and makes it darker, which in turn keeps the laser from penetrating the skin and hitting the vessels. Ty has had 15 treatments so far, beginning when he was 2 ½ months old. He will be 5 years old in Sept. 2008. He has had 80%-90% lightening in most areas, and almost complete clearing of the pws on his neck. The hardest areas to treat are the mask area around the eyes, and his lip area. Ty’s laser doctor is Dr. Roy Geronemus. He is the director of the Laser and Skin Surgery Center in New York, Ny. Ty goes to New York’s Eye and Ear Infirmiry for his laser treatments and eye surgeries/appointments for treatment under anesthesia. The healing time varies for Ty’s laser treatments. It is usually between 10-15 days, but we may see fading for up to a few months. There's no definitive number of treatments that Ty will need. So far we have always seen some improvement so we continue to get them. He will always need to maintain treatment in order to keep the PWS from getting darker again.
A PWS may also be a marker for associated syndromes such as Sturge Weber. Sturge-Weber Syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye and internal organ irregularities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.
Ty has had three MRIs to check if the vessels were involved in his brain. Brain involvement is one of the symptoms of SWS, and it can cause seizures. All MRIs were clean for vessels in the brain. Ty does have a malformation behind his eye in the area called the chrodial area, which is another marker for SWS. Since his birthmark covers his eyes, the blood vessels are causing the intraocular pressure in his eyes to elevate. Therefore, he has been diagnosed with glaucoma in both eyes. This malformation, along with his glaucoma, attribute to Ty’s diagnosis of SWS. One reason why his eyes stay so squinty and red all of the time is due to his glaucoma. Glaucoma can cause light sensitivity and watering of the eyes. It can also cause loss of vision and enlarged corneas. Ty has had 9 surgeries to control his glaucoma. Unfortunately, it can not be cured only controlled. He takes three different types of drops two times every day. He will most likely have frequent surgeries on his eyes for the rest of his life, or until a cure for glaucoma is found. In May of 2007, Ty developed a severe bacterial infection in his left eye. He was in the hospital for a week getting his eye injected with antibiotics. The result of this infection coupled with his severe glaucoma has left him blind in his left eye. This is also the reason for the droopiness and the physical appearance of his eye. He has since been able to see an ocularist. She formed a new partial prosthetic eye for him. You can not even tell that it isn't real. It is so cool. We are still learning day by day about PWS/SWS/Glaucoma. The hardest part about Ty's condition is not knowing what the future holds for him. We just take it day by day and rely on our faith in the Lord Jesus Christ to help us through.

Thank you for taking the time to learn a little about Ty and his condition. For more information, please visit the sources of the above information at http://www.sturge-weber.com/, http://www.birthmarks.com/, and http://www.laserskinsurgery.com/

What Ty's skin looks like after having a laser treatment

Tyler after 15 laser treatments

Sturge-Weber Syndrome Awareness