Friday, January 22, 2010

Lessons in Life

Whew! what a jump start on 2010. We have been spreading the wealth of sickness here at the Pritchard house. Even my computer seemed to feel the need to catch a virus or two. Now I am back online. It is funny how you feel so out of touch with everything when you don't have your computer. Although God showed me in my week without it that I could function. Sometimes it is a little too convenient to play on Facebook or Blogger when I need to be doing other things that are required of me. I just love those lessons. I don't love them when I learn them, but when I ponder and reflect on it I am so grateful.
I am getting ready to head out to my annual Camp Crop-a-lot weekend at Carson Springs. Not all of my besties could come this year. Ya know who you are, I will miss our sweet fellowship. I do have two of my girls going though, and we are really looking forward to it. I LOVE Carson Springs. It is one of the only places that I can actually cover up using the sheet, blanket and "gasp" the bedspread. I have a thing about covering up with hotel bedspreads. It grosses me out!! Don't ever watch those true shows on Dateline. They will change your life. Anyway, Carson Springs is so clean and quiet and nestled in the mountains that it just makes me relax. What better way to spend a relaxing weekend than scrapbooking, lounging, eating, sleeping, and getting hardly any cell phone coverage. It is so great. I am so thankful that God has blessed me with a loving hubby who loves spending time with his kids. Who also loves me enough to know that I need this time each year. He is probably the most selfless man I know by always putting me first.
On another note, we have a semi-update regarding Ty's ptosis of the left eye surgery. It is scheduled for July 28. Dr. Palu will perform the surgery that Wed. then Ty will see him the next day and then again one week after surgery. I am so excited for Ty. I just want him to be able to have a normal looking eye. We talked about it the other day, and he wants the same. He told me he really doesn't like it when people ask him what is wrong with it. It makes him uncomfortable. I can relate in a way, but only a motherly way. It doesn't make me uncomfortable, but it irritates me at times. Example of last week: Andy took him to Wal-mart. (yes, I know consider the source) The cashier went on and on b/c some people don't know when the right time to shut it is. He just blurted out with, "What's wrong with him?" Ooooh, that is my all time worst comment. The fleshly part of me wants to say, "Nothing, what is wrong with your face?" Alas, I know that this is not being the light to the world so we just ignore it. However, I can only imagine what Ty feels like. I am praying for a complete cure one day, but until then we will just have to make due with the advances in technology. So come August I pray for my precious angel to have a newly lifted left eye to match his right one. We will for sure keep everyone posted. 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