Evan loves to sing, and like any proud parent.... I thought I would share his favorites with you. (Don't forget to pause the music on my playlist)
Tuesday, September 21, 2010
Saturday, September 11, 2010
School Already.....
Last but not least is my final update on Ty's eyes. I am so sorry that I have been so bad at blogging and keeping up to date on this. I know that many people check the blog for the purpose of finding out how they can pray for our family. I will try to do better at that.
Long time no talk....
The one stipulation to Ty swimming was that he had to wear goggles. Sounds easy enough, but this began my whole summer of this, "Ty, put your goggles on". I swear it was every 2 seconds. It is more difficult than you might think to make sure a 6 year old is wearing goggles and protective glasses at all times.
Evan's favorite pastime was drinking the pool water. Yes, it is gross I know. Let's just say that he had no problems filling those diapers up for me!!!
We spent the summer going back and forth to Dr. M here in Knoxville, and Dr. R in NYC. Almost every week we were at the doctor somewhere. Andy and Ty made many up and back in a day trips. Ty would rather go with his daddy. Apparently, I am too stressful for him. HA!!!! Never!! I do get stressed out a little. I am very thourough with my question asking. I am sure those docs love to see me coming. We kept receiving great reports and Ty was finally able to stop his liquid medicine that he was taking four times a day. He also was able to stop one of his eye drops. His pressure continued to come down all summer. It is currently at 15!!!
One of our NYC appt. was over my birthday weekend. We decided to take the whole family and drive there. We made a stop in Amish country on the way back. That was really fun. The kids enjoyed it and it really was beautiful!! We could learn alot about simple living from the Amish. We took a horse and buggy ride through the country and it was cool. The kids did well and thought it was great. Here we are waiting for our turn!
Next up was another trip to Destin, Fl with Andy this time. We also invitied my mom and step-dad to come along with us. It was so nice having Andy with me this time. I really missed him on the first trip. I loved spending time on the beach reading with my mom too. It was very restful.
We had lots of Splash Country trips with our friends this summer while little Evan stayed home with the babysitter. He is not quite old enough for me to take to Splash Country all day long with the big kids. All in all it was a great summer. After Ty's surgery Andy and I both had the mindset that we were gonna make this summer as fun and memorable as we could. We have no clue how long his eyes will be stable. I want him to have wonderful memories of his childhood. I praise God that he has blessed our family to be able to do that. We want to thank you all so much for your prayers, thoughts, and just caring about our family. Up next.... school already, Ty's latest appointment, and Ty's 7th birthday!
Ty's birthmark
Tyler's Birthmark
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/