Wednesday, November 26, 2008

Fantasy of Trees

We headed out today for our annual visit to the Fantasy of Trees. This is our third year to go, and I just absolutely love it. The kids have a blast, and all of the money spent goes to an awesome cause- East Tennessee Children's Hospital. So if you live in this area and have never been then I must recommend that you check it out. You will not be sorry.

I had a rough morning getting there. When I got downtown to the Convention Center the Holiday Inn Parking garage was full. I have never been when this garage is full, so I just wasn't sure where to park. It has been many years since I have been on campus driving around. (almost 10 to be exact). I was a little nervous, but eventually I found an obscure lot down behind the Foundry. I didn't have to pay, but that kind of made me nervous. I had visions of coming back to a towed car! I guess the catch was you had to walk 14 hundred miles to get to the Fantasy of Trees so who cares if you park there. The kids did great. Even Ty with his healing leg. It is pretty much back to normal now, and he only has an ever so slight limp. We just walked kind of slow for him. We made it finally. Then when we got in the door, I realized that my camera battery was almost dead. All my scrapbooking friend can relate. I thought I would die. I mean we had the matching outfits on. No camera- AHHHH! I did manage to salvage it for a few great pictures though. After these couple of mishaps the day turned out perfect.
This year my niece, Rachael, was singing. So we watched her junior praise team sing a few songs, which were so good, and then headed off to the booths. My sister-in-law, Susan and her mom Betty, along with Rachael walked around with us. My mom and my Gran E also met us there. I was grateful for the extra hands for sure since this was Evan's first year at the Fantasy of Trees. He did great as usual. Man, I had forgotten what it was like to have that darn stroller again. It is good for carrying things though.

So we hit some of our favorite booths. The cookie making booth, the nail painting booth, the mini tree booth, the craft bag booth. We also rode the carousel and the little tea cup things.
I know what you are thinking and yes, Ty does get his nails painted. He loves to do whatever Tristan and Rachael do. I just let him do it. I figure it will only last a while, and the year that he decides he doesn't want to do it anymore I will be sad. That means he will be growing up. So until then I will cherish these memories- Gold fingernails and all!
The carousel was fun this year. Mom rode with me and the kiddos. Evan had his first ride. He enjoyed it for sure. Tristan was so excited to ride on the horse sponsored by Dr. Abby and Dr. Greg. She raced to it and about took everyone out trying to get on "Dr. Abby's horse".
So after a quick look around at the trees, and I do mean quick, we headed home. The trees are beautiful, and I would so love to have an adult day sometime at the Fantasy. It would be great to look at them. With my kiddos it just doesn't happen. I don't really mind though because one day I will be able to look at those trees, and the cookie making, nail painting and tree decorating will be of the past. That will make me sad for sure. They grow so fast. I hope you enjoy our slide show of pictures.

On another note, please pray for Ty and Andy. They will fly out to NYC tomorrow morning at 5:45am for Ty's 16th laser treatment the Friday after Thanksgiving. I am sad as this will be our first year of not being together as a family on Thanksgiving. Andy and I know though that this is one laser treatment closer to maintenance. We are hoping for only two more until we reach maintenance- per Dr. G. I will keep you posted on his progress. Until next time.... Have a wonderful Thanksgiving. God is so good and He bestows many blessings upon us. We have so much to praise Him for.

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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