Sunday, March 28, 2010

Whirlwind!

Hey all! I feel like I have been through a whirlwind this past week. I want to thank all of you for your support, kind words, and strong prayers. What we found out from Ty's doctor was less than wonderful news. News that in my heart I knew was coming, but news I really didn't want to be prepared for. After we arrived at the doctor at 9:00am Ty had multiple tests. His pressure was still at 29. He had a visual field test that determined he has lost some peripheral vision due to his glaucoma. The last optic nerve pictures that NYC has are in July 2008. They took some more optic nerve pictures and found slight changes that would be consistent with this vision loss. This is what glaucoma does to the vision. It takes the peripheral vision first and then slowly starts tunnelling away until the vision is no more. This is of course if the pressure remains uncontrolled, and the optic nerve is damaged. Once the nerve is damaged, it can't be reversed. On a positive note his full on frontal vision is 20/25. That was great!



Basically, Ty's Sturge Weber Syndrome( http://sturge-weber.org/index.php?option=com_content&view=article&id=15:glaucoma&catid=3:conditions&Itemid=8) has caused his glaucoma to be out of control. All of the methods of controlling his pressure have failed. He is already on the maximum amount of medication that he can be on so the next step is surgery. His doctor's will perform a deep sclerotomy and place a Baerveldt shunt implant into his right eye. He will have this done on Wed. April 7. These procedures will work to drain the excess fluid in his eye and hopefully regulate his pressure back to normal ranges. I will post more about these procedures and their risk of complications as I learn more.

As you can imagine I have many questions for his doctor. So I have emailed him to find out all of these answers. I know for now that Ty will have blurred vision for approximately two months after the surgery. This is a serious issue for him due to the fact that his right eye is the only eye he has that functions. I am not yet sure what this will mean about finishing his Kindergarten year. Praise God he is doing super in school, and he is where he needs to be in his reading and math. He only has 7 weeks of school left. I do not know if he will be able to go these last 7 weeks or not. This will most likely be a wait and see thing regarding the outcome of his surgery.

Needless to say, Andy and I are scared. We know what the worst case scenario is, and we don't like it! The worst case is that he will be blind! The best case is that this surgery will stabilize his eye. It is so hard to trust in the unknown. I am so grateful for God's sustaining grace. I am so positive that I could not function without it. I know that ultimately Tyler belongs to God. I am just the "honored Earthly guardian". I also know that whatever God decides to do that He has a complete purpose for it. Andy and I will never quit praising God's name even if He allows Tyler to go blind. For you see if you will study Sturge-Weber Syndrome you will know how much worse it could be. Tyler is a miracle already compared to some. However, this doesn't mean that we will not be pleading with God to save and protect his eye. We ask for you all as our prayer warriors to do the same. I plan to update this blog with every detail that I get. For now we ask that you pray for Tyler and for us. Pray for the surgery to work without complications and the pressure to stabilize. Until next time....
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Friday, March 19, 2010

Prayers for Ty

Ty had his check up today with Dr. McDaniel, his Tennessee glaucoma doctor. Things are not looking too great for Ty regarding his eye pressures. He has consistently had high pressures for the past 4-5 months. The readings have been around 28-29, which is definitely too high. Anyway, Dr. M. believes that it is no longer possible to put off the inevitable. It looks like surgery is most likely in Ty's near future. A trip to NYC has been scheduled for next week to see Ty's NYC doctor, Dr. Ritch. We will leave on Wed. 3/24 to make it to the appointment on Thursday 3/25 at 9am. This will be an assessment regarding which route we will need to take for Ty. Dr. M here in Knoxville did not want to make the call, and wanted Dr. R in NYC to make this call. Will it be surgery? Will it be more drug therapy? I know for certain we can't add a drop. He is already on the highest amount of drop medication allowed. We just don't know until Dr. R checks him out. We are praying for a miracle as we have prayed for before. I know it can happen because I have seen it first hand with my precious buddy. Obviously, surgery is the less than desired outcome. I also am realistic. Ty's last surgery for glaucoma in his right eye was in 2005. He was not even two yet and now he is 6 1/2. The right eye has always been the better eye. It never has needed too much attention after that first surgery. I knew it wouldn't last forever though. You know how you can just get in a comfortable rut though? I was so comfortable in having that part of Ty's life on hold for a while. It has been nice not having to fly to NYC every few months. I guess I am scared. I will not lie. This is a very stressful time for us as a family. On one hand, I know the Lord will guide us through- His Word promises this! On the other hand, those little moments of fear creep in. This is the only eye that has vision! What if... What if... What if...????? I ask that you would please add us to your prayer lists once again. For many specific things: 1. That I would let this fear completely go and trust God Almighty specifically leaning on Jer. 29:11. Such a hard thing to do even when I know it is the right thing. 2. For my emotional strength- Ty is old enough now to really grasp what is going on. He can see me break down when I start to. I pray to hold it together in front of him. 3. For Ty's strength. God has blessed us with a child that can make it through many tough things. I pray for his resilience once again. 4. For the possibility of controlling the glaucoma with more drugs instead of surgery. 5. For Tristan and Evan who will be staying home this time.
We know we have unbelievable support with our many prayer partners, family and friends. It means so much to us. I will be posting the outcome on the blog. Thank you so much and God Bless!

Ginger
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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