Wednesday, August 20, 2008

God is Good

Hi all!

As most of you know, Ty is coming up on his 5th birthday on Sept. 4. So with his Sturge-Weber Syndrome, which hopefully most of you have read about on this blog, he has a potential to have seizures. The doctors have researched that the percentage of seizures goes down with each milestone in age that a person with SWS reaches. (1 year, 2 years, and the last one being 5 years). Basically if Ty has not had seizures by the time he is five years old, then the liklihood of him every having seizures is maybe 3%. This is a huge milestone for our family. In short, Ty is a miracle child. Given the extent of his Port Wine Stain, he should fully be experiencing seizures right now, plus maybe even developmental delays. GOD IS SO GOOD!! Everytime I get down about his eyes, all I have to do is be reminded of what could be. I am so anxious to learn what God has in store for our Ty. I do know that Romans 8:28 promises that it will be good whatever it is.
Ty sees a pediatric neurologist here in Knoxville. His name is Chris Miller. He is wonderful in case anyone needs a reference for one. Ty had a check up last week. Dr. Miller says that everything is wonderful, and to look at Ty he couldn't even tell that he had anything wrong with him. I agree whole-heartedly. Ty doesn't need to see him again until he is 8 years old, and that is just so that he can monitor how his learning in school is going. So things look great from the brain end of Sturge-Weber Syndrome. As for the eyes, they are stable for now, and for the PWS it is fading so amazingly.
He just asked me yesterday about his birthmark on his scalp. We chose not to treat it b/c his hair covers it. He had his hair cut pretty short recently, and it is kind of visible through his hair. He just said, "mommy, what is that red stuff". I said that is your birthmark. He was too cute and said, "In my hair!" I had to laugh at him. He is so much like his daddy that it is scary at times. Let's hope that I stand a chance with Evan. I don't think my life can handle three Andys.
Until next time.....
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Wednesday, August 13, 2008

School Has Begun

The first day of school has been here and gone. The kids did great! They both walked into their rooms and found their seats. They let me take my pictures and kissed me goodbye. I have anxiously been looking forward to this day. They were starting to get bored with me and each other. Although I was ready, I found myself missing them during the quiet today. It is so neat to watch them grow up, but sad at the same time. I was looking at last years school pictures and what a difference. They have grown up so much.
Evan enjoyed his day a lot. We went for a walk this morning, and then back home to do things at the house. He napped and played all day without being poked and prodded. He missed his brother and sister alot though. When he got to see them he gave them the biggest smile. Ty had him laughing this afternoon, and it was cracking me up. There is nothing like hearing your kids laugh.
It is hard to believe that another school year has begun, but I love the fall and I am looking forward to all of the activities that happen then. Miss Tristan has slightly fractured her growth plate in her right wrist. She is in a removable wrist brace for a couple of weeks. This is the same wrist she broke two years ago, just on the other side. The doctor wasn't sure when she had broken it. Neither are we to tell the truth. She had been complaining for a day or two so we took her for an x-ray yesterday. All I can say is thank goodness it isn't serious. That girl is so graceful. Gets it from her mother of course.
Our next adventure will be Labor Day weekend. We will go camping as a family for the first time. We are going to Alabama to meet some friends from our birthmarks.com support group. They all have children with birthmarks. There will be three-four families possibly. It will be so good to meet other people going through similar things that we are. So I will keep you posted on how that trip goes. Thank goodness we will stay in a camper. You all know how I HATE bugs!!!
Until next time.....
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Saturday, August 9, 2008

One week since Ty's treatment

It has been a week now since Ty's laser treatment, and as you can see he is healing quite nicely. I have been intriqued by the way Ty is handling some of the questions regarding his birthmark and laser treatment. He has shown me that he is growing up, and "Gasp!," doesn't need his mommy to always answer questions about his face for him. Sometimes it would irritate me when adults would just ask me right in front of him like Ty couldn't hear them, but now I find myself wanting to answer those questions. Like Andy has said, I must let him figure it out on his own. I know this, but the Momma Bear in me wants to take all of his anxiety and hurts away. God continues to teach me daily from Ty's challenges. For instance he had Open House at school yesterday. We went into a new classroom with around 9 new kids that he has never met. He was so great. One little boy innocently touched Ty's face and asked him what was on it. Without missing a beat Ty just told him it was his birthmark and the little boy was fine with it. I long for the simplicity and acceptance of children sometimes. They are so sweet, and just take things for how they are- no questions asked. I think that Ty will have a great year. His teacher, Mrs. Stephanie, is such a loving, kind, and patient person who loves her job. I know she will be great for Ty.
We haven't met Tristan's teacher yet, although I have heard wonderful things about her. We will meet her Tuesday night at Tristan's open house. We are winding down the summer. This Wed. school begins. We are praying for a great year for her as well.
Little Evan is finally big enough to play in his exersaucer. He has liked the new toys and chances to play. I think he is ready for the peace and quiet in the house that school will bring. That will be a new thing for him.
I just wanted to say, Happy Birthday Grammie. We are celebrating later this evening with dinner.
As I am typing this it is so quiet in my house. Andy is working today, Evan is napping, and Tristan and Ty are spending the night with their Kiki and Poppy. I am reminded of the simplicity of life with one child. Oh how easy those days were, even though I remember struggling to get things done. It is amazing how God teaches you to adapt your life to the changes He brings into it. Now I can't imagine life without three kids. It has it's moments, but for the most part is no more difficult than having two children. I get this question alot. I guess people think we are crazy to have more than two children. For Andy and I it is such a wonderful blessing to watch these little people grow. We praise the Lord for all three of them.
I want to ask everyone to pray for all of the children and teachers who will begin school this week. May everyone have a wonderful transition from summer to work/school. Until next time...

G
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Friday, August 1, 2008

Ty's Laser Treatment


We just got back from New York tonight. Whew! what a quick two days. We flew up Thursday, and Ty went to see his glaucoma doctor, Dr. Ritch. Dr. R checked his right eye's pressure, and things are holding steady at a 23. He also took pictures of his optic nerve, and told us that things are looking just fine. What a huge praise here! Ty and Andy then enjoyed a slice of pizza with Dr. R in his office. How cool is that? Dr. R also told Andy that he has no doubt in Ty's lifetime that it will be possible to regenerate Ty's left eye. The optic nerve in the left eye isn't damaged, only his retina. Wouldn't that be amazing? Only time will tell. Dr. R said that he would love to be the one to do it too. He is a great doc. Since all is well Ty is to continue seeing his local glaucoma doctor, Dr. McDaniel, and come back to Dr. R in 1 year.
That evening Andy and I took the kids to watch the Yankees play the Angels. We had a blast. We rode the subway, and it let us out right at the stadium. I found this so easy, and only wish we had the same advantage in Knoxville when U.T. plays. We had awesome seats right behind the Angels dugout. The kids both got game balls from a couple of Angels players. They rolled them right over the dugout to the kids. They were so excited. As you can see in the pictures. Well the Yankees got creamed last night 12-6, but it was a great experience anyway. Yankee Stadium was neat. This is the last year before they move to the new stadium.
This morning was Ty's laser treatment. Dr. Geronemus, Ty's dermatologist, says that he looks great. I agreed with him. He feels like if we could maybe do around 4 treatments every three months this year that we could possibly acheive 100% clearing in some more spots. He pointed out that Ty has already acheived 100% clearing in some spots. This was great news. We will try to go back as much as we can before Ty begins Kindergarten in 2009. Ty did really well, and we hopped on our plane back to K-town at 3:40pm this afternoon. Although it was actually more like 5:00pm when we were able to leave. We made it home okay. Everyone is in bed now, and I am headed that way. Thanks so much for all of the prayers for the trip. Until next time...

Love,
G
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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