Friday, April 10, 2009

Day 6: Mine was THIS big!!

We had another yummy breakfast at Olivia's this morning. I am getting used to this great food. Too bad the part about someone cooking for me won't last forever. After breakfast Andy and the kids got ready to head out on their fishing excursion. I sent him armed with the camera while Evan and I hit Downtown Disney for a while. This is what he captured.

Hmmm! I believe Tristan has one of my faces. I wouldn't have touched that fish with a ten foot pole. I believe she is thinking the same thing in this picture.



As you can see, Ty had no problem holding that fish!

Check out the size of this sucker.
Andy says this is the one that Ty caught with a little help from daddy of course. It is as big as Ty. The kids love to fish with their daddy, and I am so thankful that they can spend time with him this way.











There will be more of our interesting afternoon of Day 6 in another post. Let's just say I pulled another brillant "Ginger"
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Day 5: Animal Kingdom

Okay, I am really behind on this trip report. I have been crazy busy, but have decided enough is enough and it is time to go back on vacation. Won't you join me in Animal Kingdom today?
Another bright and early day. Really this is the best way to get all of the big rides accomplished before the crowds swarm in. We really love Animal Kingdom. It is kind of like a zoo, with such cool features. It is so much fun. Once we entered, we went straight back to get Fast Passes for Expedition Everest, the huge roller coaster.
This is it. It really looks like fun, but unfortunately this time around Andy got to ride with Tristan. I promise I am making the ride the next time we visit. Andy said it was great. Tristan loved it as well. She is becoming quite my little coaster junkie. Too bad her mama has to take a little Dramamine before riding them. It stinks getting older. While Andy had gone to get the fast passes the kids and I were waiting for him. It was St. Patrick's Day and we all had on our green. The really funny part of our morning is who we ran into at Animal Kingdom. Ty's pre-k teacher, Mrs. Stephanie. We couldn't believe that we saw each other. Especially considering the amount of people there. We ended up screaming and hugging each other. I am sure people thought that we had lost our ever-loving minds. Ty was being cranky, and he refused to have his picture taken with Mrs. Stephanie. Tristan decided that she would be the stand in.




After saying bye to Mrs. Stephanie, we headed over to the Kilimanjaro Safari ride. We got FP for this too, and decided to walk one of the forest trails while we waited on our time to ride the Safari. We saw quite a few animals on the trail, and then we noticed King Louie and Belew from the Jungle Book.
Evan was too cute with King Louie. He couldn't quite figure him out.









King Louie was pretty funny. I was waiting in line in my signature stance, hands on the hips. He noticed me and pointed to my arm being up, and then he covered his nose and fanned his underarm. He was trying to say that I stunk with my arm up. It was hilarious. I promise I wore my deodorant though. While we were waiting in the line we got a chance to see the "plant lady- Devine" She is really neat. She is covered in vines and walks on stilts. She really looks like she is a tree. We enjoyed watching her.
Next, the kids saw some bongos in "Africa". We stopped to have a little bit of playtime.









After playtime it was time to ride the Safari. Evan got to enjoy this one. We saw tons of animals, and Evan really had fun. I wish I would have taken more pictures of the animals. They were pretty active. I was trying to hold onto Evan, myself, and the camera all at the same time. I finally handed Evan over to Andy, and I snapped this shot.








After our Safari ride we headed over to The Tusker House for a yummy lunch. There were lots of good things to eat on that buffet. Some interesting African food. I enjoyed it. After lunch we decided to head on back for our afternoon nap. We ran into a few "friends" on our way out.
Brer Rabbit, from "Song of the South" , and
Terk, from "The Jungle Book

Meeko, from "Pocahontas"

This was probably one of my most favorite days. I loved looking at all of the animals with my kiddos. That night we decided to turn in early because tomorrow Andy and the kids were going on an early fishing trip.
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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