Tuesday, September 23, 2008

Camping again!






We are getting this camping thing done! We just got back from another family weekend. This time we went with the Groom's family to Gatlinburg. It was a blast. The kids had so much fun just spending time together. They haven't been able to do that in a while. Our schedules have changed a lot since the kids have started school. I told Tracy after looking at some of the pictures I took of the kids this weekend that I was kind of sad to see them grow up. This picture in particular made me a little nostalgic. I can certainly remember five little kiddos downstairs on my couch eating popcorn and watching T.V. after swimming in the pool. Little kiddos does not really fit the description now. God has blessed both of our families tremendously. It is amazing to hear some of the things that they are learning. Mason just led a little boy at school to Christ last week- How awesome is that? Tristan talks constantly about her love for Jesus! She has such a compassionate heart that is only from Christ. Her and Carter are getting ready to start our church's "Now that I am a Christian Class" This is the class that saved kiddos take before they are able to be baptized. She couldn't be more thrilled. She is so ready to get baptized. She asks me daily.


Ty is learning lots of things too. He is so sweet. He has not a care in the world. A little stubborn at times though. I have to laugh at him when I ask him what he learned at school for the day it is always, "NOTHIN". Then when he thinks I am not listening I will catch him singing songs, reciting his memory verses, or doing his vowels.


Evan is growing, growing, growing. He is now sitting up for short periods of time unassited. We are still waiting on those teeth to come in.


Well it finally happened! Tristan learned to ride her bike without the training wheels this weekend. She was so excited. Tracy and I both believe that she wasn't about to let Mason and Carter show her up. She really is just one of the boys at times. She loves her Mason, Carter and Trent. Here you can see her pedalling away. As for Ty, he would rather do the Fred Flinstone on his big wheel. He can get around faster that way. He really has no desire to learn to ride his bike even with the training wheels on. Oh well, I guess I will be getting the bike that attaches to mine so that I can haul him around. We have scheduled Ty's 16th laser treatment for the day after Thanksgiving. Andy and Ty will leave on Thanksgiving Day and have the treatment that Friday. It will be crazy busy up in NYC with the holiday. I am praying now for travel mercies. On a positive note though, Ty's face looks amazing. We are praying for a few more treatments until we can claim maintenance. That is about once a year. Here is another picture of Ty this past weekend. Yes, he is nasty. What else should boys look like? That bath water sure was black.
Until next time guys....





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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