Monday, July 28, 2008

Summer is fading fast

Just like I said, summer is fading fast. Andy and I took the kids to Dollywood yesterday along with Aunt Susan, Uncle Jimmy, and cousin Rachael. Yes, it was a unbelievably hot day, as well as humid. We had a great time though. Evan did really well. He was stripped of his clothing, and just rode around all day in his diaper. We found out that he loves ice water too. Who would've known!
I could tell that I am getting older when I had to take my Dramamine in order to ride the roller coasters with Rachael. So Aunt Ginger wouldn't get motion sickness. Wow! never thought I would have to do that.
Summer is almost over, and it will be back to schedules and homework. I will have a 1st grader and a Pre-K 4 kid. I dread the summer ending, but oh how I love the scheduling of school. It makes me feel like I am accomplishing lots more. Summer is for playing. At least while the kids are little because as we all know it won't be forever. Childhood too is just a season.
I am sure Evan is counting down the days so that he can take a quiet nap in the house without running and yelling. As for "Milk Mouth" a.k.a. Evan, he has now started solids. Graduating from rice cereal, to sweet potatoes, to carrots, to oatmeal. He loves them all and doesn't waste any time getting it down. He rolled over for the 1st time yesterday from back to front. He gets stuck in this position though. He is growing so fast. Andy and I have decided that we now remember what we missed about the baby stage- THEY DON'T TALK! Ah ha, ha. Just kidding. All of my kids are true blessings, and I am so thankful for each of them.
Pray for our travel mercies as NYC is coming up. Until then...

Love,
G
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Tuesday, July 22, 2008

Welcome to Days Go By

Hey everyone,

I hope you are all having a wonderful summer. We are, but it sure is flying by. I can't believe the kids will start school on August 13. Only three weeks away. Little Evan is growing by leaps and bounds. He is 4 1/2 months old and just starting to eat cereal. He loves it. He is definitely his mother's child.
After looking at blogs that others have created, I was inspired to do the same for our family. Mostly though so that everyone could view Ty's progress with his laser treatments and his glaucoma treatments. I will have some family stuff along the way though. I am a newbie at all of this blogging stuff. It is amazing what you can do. I am still learning so if any of you are experts at it, and have some advice, feel free to send it my way.
Our latest update on Ty is he will have his 15th laser treatment in New York City on Friday, August 1. This trip will be fun because my mom is keeping Evan, and Andy and I will be taking Tristan with us. We are going to take the kids to see a Yankees game. This is the last season in Yankee Stadium so it should be a lot of fun. I can't wait! It will be a whirlwind trip though so pray for travel mercies. We arrive in NYC on Thursday at 8:00am, and then Ty will see his NYC glaucoma doctor at 12:00pm for a checkup. The game is later that evening at 7:30pm. We have to be at the hospital at 6:30am the next morning, and then we fly back home at 3:40pm. WHEW! I pray that things work out okay. I will post pictures and information on the trip as soon as we get back. Until then... Stay cool inside or in the water.

Love,
G
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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