Wednesday, August 12, 2009

What to do with those Old Easter Buckets
















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Saturday, August 1, 2009

Priceless!

We are back from Ty's latest appointment. This time we traveled to Nashville to meet with Ocularist, Sherry Richardson. She makes prosthetic eyes. Ty spent most of the summer without his eye in because the fit was just not that great, and it would cause him some discomfort and gooping of the eye. Ty's last prosthetic eye was in 2007. Needless to say, he has grown quite a bit in the past couple of years, and it was time for a whole new eye. I recorded the process the best I could with my camera. So I thought I would let you see how it works. First off, Sherry is so cool! Not only is she amazing at her job, but she has the patience of Job. Ty spent most of the time sitting on her lap while she formed, molded, and painted his "eye". It was so neat to watch. First off we have the before picture. You can see how the eye is closed completely, and very droopy. Also, Ty tried to show off the inside of his actual eye. This is what the real eye looks like. Notice how small the iris part is? You can hardly see it. It is actually the size of my pinky fingernail.












The next process was for Sherry to make the eye impression for the new prosthetic mold. If you have ever had an impression made in your mouth, it works very similar. She inserted a mold into Ty's eye with a tube on the outside. She then injected the impression liquid into the tube so that it would go into the mold in Ty's eye. This part was hard for him. It burned a bit, and it was cold. So we had some crying going on. I stopped taking pictures then. I just didn't feel right about it. It seemed kind of cold to take pictures of my baby in pain. Here are the ones that I got at the beginning of the process.













Once the impression was made it was time for the mold to be made out of wax. This was too cool. She used this mold to shape and form a custom fit eye for Ty. She used tools and an alcohol burner to smooth the wax so that there were no rough spots that could irritate Ty's real eye. This is her forming the wax with a little help from her assistant.












Ty was impressed that he had a yellow eye. He really wanted to make that his "new eye". The boy cracks me up. He was serious too. I can only imagine how the little wheels in his head were turning. He must have been thinking up some doozies to tell people why he had a yellow eye. He kept asking Sherry, "How come I can't just have that one". Too funny!
After the molding was finished it was time for the baking of the eye. The artificial eye is made from acryllic. Yes, the same stuff that artificial nails are made of. So the acryllic goes in the wax mode and in a couple of hours - TA DA!- a new eye is made. The next step is to paint the eye so that it looks exactly like Ty's other eye. This is cool. Ty sat on Sherry's lap so that she could really get a good look at him, and she painted it to match his other eye.












You can see all of the different colors she has. Ty was really set on having orange in his eye. That is his favorite color- GO VOLS! So she made a special orange dot at the top of the eye so that we would know which way to put the eye in. This satisfied him. The painting of the blood vessels was really neat. She took small red fibers that look like fuzz and distributed them across the eye. Then she smoothed it over with the acryllic. It smelled like a nail salon in there. After the painting was finished it was off to the oven to bake and then to polish the eye at the end. This process took about 1 hour. After that Sherry was able to put Ty's new scleral shell in. This is the finished product. His eye is usually swollen for a day from all of the poking and prodding. This was right after inserting the eye.












This is what he looks like now after wearing the eye for a couple of days.
Pretty impressive if I do say so myself. You wouldn't even know which was the artificial one.


We are so thankful to the Lord for Sherry's talents. She is able to make our sweet little boy have some confidence, and that is priceless. Well I hope you have enjoyed your lesson on scleral shells today. Until next time.....
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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