Sunday, May 9, 2010

The Light

Hey all! I know it has been a while since my last post. I am so sorry, but I have been working like crazy going to doctor's appointments, winding things down at school for the summer, etc. So I will start from my last post. The trip to NYC on 4/22 with just me and Ty went really well. We left Knoxville at 6:30am and arrived in NYC at 8:30am. We went to the doctor at 10:00am, and then afterward had our lunch at a pizza place. We hurried to ToysRUs in Time's Square, one of Ty's favorite places, and then it was back to the airport to catch our departing flight at 2:00pm. We were home by 7:00pm. Dr. Ritch was pleased with what he saw. Ty's pressure was at a 16, which was great news and by all accounts they think the surgery is doing it's job. He even gave us a week off from NYC which was great. When we got home we were both exhausted. Those up and back in a day trips are hard. I think what made it even harder was that while I was gone Andy decided that he would be helpful and take Tristan and Evan to get their hair cut. Now Tristan's hair is not a big deal to cut. Just trim a few inches off and it is good to go. Evan, on the other hand, is my curly-headed boy. Yes, I know it was l-o-n-g, but still I was terrified to have it cut and lose his curls. I look back now and laugh at myself. It is just hair after all. I know it sounds silly, but it was like my one thing to control. I had been through so much stress with the surgery, trying to keep Ty still and calm (ha!), and things in general that I couldn't control. It just felt good to know that I could control the length of Evan's hair. Ha! It sounds crazy now. I mean when I think about it I should have gotten a clue when people continued to say, "Oh, she is so cute" I would just smile and say, "thank you". All the while I am thinking, "Seriously! he has cars on his shirt and is wearing blue! He is obviously a BOY!!" I don't think I wanted to see how long it was. For example: Evan in exhibit A could probably produce a couple of pigtails very nicely.

So when we walked through the door that evening the first thing that I saw was Evan's haircut. Andy had given him a bath and let it dry straight down the front of his head. The curls were all combed out and it looked awful. Plus I was a little emotional. Poor Andy wasn't sure who had just come through the door; his wife or a two-headed dragon. I did apologize afterward, and when I did fix Evan's hair myself it was fine. It looked so much better. It just goes to show you men, 1. Don't mess with our baby's hair 2. Hormones are ugly!


That next week, April 26-30, Ty was able to begin half days at school. He did very well, and really missed his friends. He finished the week by going the full day on Friday. I had asked for lots of prayers for Ty at school. The whole, "keep him calm" thing was really freaking me out. I was living on the edge of a possible accident at all times. Finally, after what I am sure was tons of prayers from friends and family I just had a peace about the whole situation. God showed me that this was one more thing that I can't control. I can make sure he is out of harms way as much as possible, but I can't control anything that will happen to him. I just have to trust God. That is what I have been doing about this situation, and although I have my days some times it has been so much more freeing to rest on HIM.


Thursday, 4/29 rolls around and it is Ty's appointment with Dr. M here in Knoxville. Great news there! Ty's pressure is now at a 14/15. Everything is looking great, and we are to go back to NYC next week on 5/6 for another checkup and possible medication changes.


Once again Ty and I went to NYC ourselves this past Thursday 5/6. Ty's pressure was at 15 again. His vision is now at 20/30, which is what it was before surgery, and we are on track to removing another one of his glaucoma medicines. We see the Knoxville doctor again on Friday, 5/14, and if the pressure is still at 15 they will attempt to remove a medicine. This is huge! We will then go back to NYC on Thursday 5/27. He has been cleared to swim in chlorinated pools which is wonderful. First off because we have a pool, and secondly because he is a six year old about to begin his summer vacation. How do you tell him that he can't swim? I was dreading that one. Now, I am on a mission to find some super cool goggles that stay put while swimming, and that won't cut his face into. He has a very large head, so I will probably need to buy adult size. I am taking any recommendations for goggles for sure. Send them my way! We are definitely seeing the light at the end of this tunnel. Obviously, this won't be our last tunnel, but we are winding down in this one. God has been so faithful to heal our Ty. I have heard many comments about how Andy and I are such great parents. I am thankful for these comments and humbly accept them. What I want to say in return is, "We have an awesome Father who teaches us, and if we are good parents it is only from Him". I will certainly try to do better in my postings. As always thank you for praying for us. We are on the countdown to summer vacation now. Only two more weeks. Ty actually has Kindergarten graduation on 5/18. I will definitely be posting on that. So 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