Monday, September 14, 2009

Time Marches On!

Once again, I am behind on my blogging efforts. School is officially in full swing, but somehow I am not. My heart longs for those lazy days of summer, but fall is quickly approaching. Time marches on whether I want it to or not.
So the new school year has begun. Tristan started 2nd grade with Mrs. Condry, and Ty started Kindergarten with Mrs. Sluss. The greatest thing for the kids this year is that even though 2nd grade is supposed to be upstairs and K-1st downstairs, Tristan's class didn't have enough classrooms to be upstairs. So her classroom is directly across the hallway from Ty's classroom. They love being able to see each other throughout the day. Ty's first day of Kindergarten was a rough day. He cried when we left him. It was so hard to do. Andy says it was because I was the only mom with a camera, and I embarrassed him. I told him, "Are you kidding me? What mother doesn't take pictures of their kids first day of Kindergarten?" He was fine after we left, and wound up loving it. He loves his teacher, and has been making friends fast. He has already had a timeout for talking. He must get that from Andy;)
Tristan did well as I expected her to. As for Evan, he once again thinks he is an only child! Here they are on their first day

Not only did school start, but on August 27-28 Andy, Ty, and I headed to New York for another laser treatment. This trip also had a few extras. Ty's laser doctor suggested we meet up with a plastic surgeon/dentist for advice on Ty's increasing lip size and his teeth. The information we received was great. It was kind of overwhelming, but most information regarding Ty's condition is. So I will try to break it down for you the best I can. Ty's Sturge-Weber Syndrome and his facial port wine stain have caused excess bone and tissue growth in his cheek and jaw. His jaw is growing longer vertically on the right side, and thus it is pushing his teeth out. His lip is also growing because of the excess tissue and blood flow from the birthmark. The suggestion from the doctor on how to treat this. We wait! Surprise! we haven't heard that one before. No, really he wants to wait a few years for Ty's permanent teeth to totally develop, and then we go from there. In the meantime, sometime in the future Ty will see a world renown orthodontist in NYC in order to possibly fit his jaw with a plate to restrict the overgrowth. Then we will talk about tackling the overgrowth of his lip by doing a lip reduction surgery. This is all in the future, but for sure what will happen at some point in time. It was good information to learn.

The most exciting information was that the dentist/plastic surgeon was very concerned with the droopiness of Ty's left eye. He wanted to know why we had not had it lifted. I just flat out told him that I had never really thought of it. I have been so concerned with the functional part of the eyes and getting the prosthesis to fit right that I never gave one thought to the look of the overall eye. So right then he gets on the phone and sets us up with a pediatric ophthalmic plastic surgeon. We met with him and immediately loved him. He is a big Yankees fan, and showed Ty all of his Yankee memorabilia. He told us that he could basically do an eyelid tuck and make Ty's eye look normal like the other one. He proceeded to tell us about how he would do the surgery. Then he told us that he wanted to make sure the muscle was working correctly. He said that he could put a dilating drop in Ty's artificial eye, and if the muscle was in working order then the drop would cause it to contract. This would in turn cause the eye lid to raise as if the surgery had already been performed. So it basically would give us a little "sneak peak" as to what Ty would look like after surgery. WOW! it worked. The doctor was excited that the muscle is still good. He really wants to do the surgery for Ty. We are on board too, and hopefully will schedule it for this summer. It is day surgery, but then he would have to see him the next day, and then a week later. So summer is essential for him to have it done. To have two eyes that look normal and open is something that Andy and I really want for him. Well that is a quick little update on our little buddy. I will post more in a couple of weeks as Ty heads back to the glaucoma doctor to have the pressure checked in his right eye. We are praying for a good outcome for that. 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