Saturday, November 29, 2008

Oh so Thankful!



Well my two guys made it back last night about 10:00pm. Ty was wound tighter than a four day clock, as Andy would say. Andy said that Ty "daddyed" him to death on the plane. This is how he gets after anesthesia and when he is tired. He likes to talk 90 miles an hour. He also doesn't like to quit talking. The treatment went well. Dr. G, Ty's laser doctor, confirmed my suspicions that Ty's lips are growing. This can happen with vascular birthmarks. The blood flow to the area can cause tissue overgrowth. Laser treatments are a huge success in preventing this if started early. I can only venture to imagine what Ty's lips would look like had he not been getting laser treatments. Dr. G had told us early on that he thought Ty would most likely need a lip debulking surgery in the future. I have been concerned lately b/c the laser treatments have done so amazingly well on his face that it seems as though I have noticed his lip size more. His PWS is also on his gums, and Ty has lost his two bottom teeth. The top three teeth are not real. It is a partial due to knocking them out when he was three years old- NOT TY, NEVER! The dentist said that about 6 months after he lost his bottom teeth that he would take the partial out. As I was inspecting his mouth, I noticed the PWS on his gums is looking more red. It was just a concern that I had. So I had Andy bring it up to Dr. G. We really do not know what we are facing with his PWS until his permanent teeth come in. It is another unknown in the journey. Dr. G did however, refer us to a plastic surgeon in NYC who is also a dentist. We will soon make a consultation with him. He will be able to tell us more info about when Ty will need lip debulking surgery, what the PWS is doing in his mouth, etc. All and all it was a great trip. Dr. G said that it just makes his job more fulfilling every time he sees Ty because of the amount of clearing that he has had. It is truly amazing, I agree! Andy said Ty just walked into the surgery room, hopped up on the table and said, "Give it to me!" He is unreal. He did get the chocolate scented anesthesia mask this time. He is his mother's child for sure. I am just so thankful for many things as I reflect tonight. For the Lord blessing me with a wonderful husband who would miss Thanksgiving with his family in order to take his child to the doctor in NYC. Also for a wonderful child who does what needs to be done medically and never once complains about it. For the Lord bringing Andy and Ty home safely. For all of my friends and family. It has been a wonderful Thanksgiving.
On a funny note, I can't believe my Andy went to Macy's on Black Friday. I was impressed. Tracy G.- maybe you should take Andy shopping with you instead of me. He is obviously da' man! He tried to act like he walked right in and then right back out and that he didn't enjoy it. I am thinking a little different though. I noticed that he had a new shirt on and so I asked about it. He then said that he did in fact get it at Macy's. Then, hold your breath, he said that he wished he had more time b/c Macy's had Polo for 40% off. I couldn't believe what I was hearing. How impressive Andy! Ty, however, says, "It was packed mom!" I don't even know if I would do Macy's on Black Friday in NYC.
I am posting some pics of Ty after treatment, and of the Kermit the Frog balloon from the parade. Thank you so much for praying for our family and until next time....
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1 comment:

Megan @ Hold it Up to the Light said...

Thanks so much for the update...and Happy Healing TY!!!

November 30, 2008 at 9:59 PM

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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