Monday, July 6, 2009

Not me! Monday

I have not participated in this little bloggy fun in a long while now. It was all started by Mckmama at http://www.mycharmingkids.net/ Not Me! Monday is a great way to get it off of your chest! Check out the other Not me! Monday blogs and come on join in the fun.

Just a few things that myself or my family have NOT done over the past few weeks.

While we were camping Ty met a couple of boys his age to play with. He most certainly did NOT tell these boys when they asked what happened to his eye that a sting ray had poked him in the eye and pulled it right out. We had been to the aquarium that day and watched/touched the sting rays. Andy and I did NOT think this was rather funny and creative. Then we had a little talking to our funny and creative boy.

I do NOT let my boy's fingernails get longer than mine. It had NOT been quite some time since I last trimmed their nails.

I most certainly did NOT on a whim decide to buy school supplies early. For crying out loud it is July and we still have a bit to go. I am NOT ashamed to say that buying school supplies is NOT one of my most favorite things to do.

Andy will NOT be out of town all week long. He is NOT gonna be out of town for my birthday on Thursday. I am NOT sad about that at all!
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Thursday, July 2, 2009

A New Birthmark Buddy

Last week we had the privilege of meeting a new family here in our local area who we now consider a "birthmark buddy. That name actually started at www.birthmarks.com. It is an endearing term used to describe those with Port Wine Stains. Many times our little newsgroup uses it in signing off our emails. For example, ybb (your birthmark buddy), mobb (mother of birthmark buddy). It is really great. I am always excited when I see other children with Port Wine Stains, or especially when I get to talk to the parents of these children. There is something to be said about that common bond of knowing exactly how they are feeling about something so personal. It is hard to explain sometimes. I can only imagine how Ty must feel when he sees a child that has a birthmark like his. He was so precious with little Zoe. He mentioned that he loved how her birthmark came across her lips. It was just like the shape of her pacifier. Then he stroked her hair. Evan, on the other hand, didn't like it so much that his mama was holding a 2 month old baby. No sirree bob! Get that baby away from my mama! Hmmm! I may need to work on that mama's boy thing.
So our new friends have started a blog http://twozeesinapod.blogspot.com/ I ask that you check it out, and add little Zoe to your prayer list. She actually has a hemangioma. It is a little different than a Port Wine Stain, but in the same family. Her hemangioma is growing around her trachea as well as what you see on the outside. So needless to say, they are seeking medical treatment in Arkansas. This is one of the leading hospitals out there in the treatment of hemangiomas. They live less than 10 minutes away from us and I hope that we are able to get to know one another a little better.
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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