Saturday, September 11, 2010

School Already.....

I can say that I am so totally thankful and blessed to be able to stay home and raise my kids. It is an experience that I wouldn't trade for anything. That being said, although the title states differently, I was ready for school. I knew I would miss them, but there is something to be said about a routine. Especially when you are as Type A as I am. So here we go with the First Day of School!! Tristan would be starting 3rd grade and Ty 1st grade. Dum Da Dum Dum Dum.....
My immediate thought on this was, "Ahh! I have the odd grades together this year". As some of you have been told, the odd grades seem to be more challenging. I swear half the time I help them with their schoolwork, and I feel like I am back in school. It is time consuming for sure. Both of the kids got great teachers, and we are looking forward to an amazing year. Although I may be pulling my hair out with all of the work and learning this year.









Evan also started Parent's Day Out this year at Grace. He went to PDO last year at our church, First Baptist Powell. They have an amazing program, but I knew I wanted to have all three kids at one place. So I made the switch. Evan has a great teacher, and has had so much fun so far. He has made two little friends already, Mason and "Booger". Yep, you read that right! He kept telling me that he played with Mason and "Booger" everyday. I would say, "You played with Parker". Evan would keep telling me, "NO, Booger!" Finally I decided to ask Mrs. Diane, his teacher, who this Booger kid was. She died laughing. Turns out the little boy's name is Booker! Whew, I was nervous that Evan was picking his nose, and he and his new friend Mason were proceeding to play with it. Thankfully, that is not the case. Here is Ev on his first day. Notice the backpack is bigger than he is.
Mrs. Diane sends home a newsletter each Thursday.(Evan's PDO is on Tuesdays and Thursdays) This past one says that one of the goals for the end of the year for her class is for all of the kids in there to be potty trained. I had to horse laugh on that one. Evan is more than ready, and actually has peed and pooped on the potty for me some, on his terms of course! He would much rather come to me and say, "Mommy, I poo in my diater.. please change me!" He is killing me. So I plan to keep tabs on the whole potty training thing. In fact, Ty was 3 1/2 years old. It was the longest time in my life I swear!! I hope E doesn't follow the same path. Training boys in my experience is no piece of cake. Maybe Mrs. Diane will have better luck.
I will say though that boys are so easy to please when it comes to planning things for their birthdays. Ty turned 7 years old on Sept. 4. Instead of a big friend party, we opted to take him to his first UT football game and then have family over on Sunday. He was so fine with this. I loved not having to plan a big party either. Here is a look back on our baby boy after his first laser treatment at 2 1/2 months old, and then at the UT game this past Saturday.




My how we have come a long way, by God's grace only, in such a short time. He has been through so much in his life, but God has given him amazing character. It makes me cry every time I think about how God has equipped my Ty to handle what he was born with. Our God is an amazing God who promises not to give us anymore than we can handle when we put our ultimate trust in HIM.!!! Is it hard to do? Yes, sometimes it is, but I can't imagine tackling these trials in our own strength, and I am so thankful that Jesus is there to catch me when I fall!!!
Here is a picture of Ty showing off his dance moves and his personality. It is never a dull moment with him for sure.












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.
So can I get a drum roll please................................... As of Ty's last doc visit this past Thursday, Sept. 9, his pressure is at 16, and his vision is 20/30. He is only on two drops. One he takes three times a day and the other one he takes at night. He will see Dr. M here on Oct. 22, and then he will go back to NYC on December 16 to see Dr. R. He will have another visual field test and optic nerve pictures to determine if any changes have happened. Oh yes, and he will have another laser treatment with Dr. G. The laser treatments have kind of fallen to the back burner, but I want to make sure we at least maintain the progress that he has made. So I have to fit in at least one per year. It makes it hard now with school. It will be an appointment close to Christmas time, and NYC is so neat at that time of year!! I promise to keep you all updated from now on. Ha!!! So until next time...........
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1 comment:

AmyA1001 said...

It's great to hear the progress of your family. Ty has come a long way, and he is blessed to be part of your loving family! I love you all. Amy

September 12, 2010 at 11:33 AM

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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