Thursday, September 11, 2008

All Tuckered Out!



All tuckered out! This is the theme for our week. I can't believe I haven't posted in three weeks. Where does the time go? We have had much happen in the Pritchard family in the past three weeks.
Labor Day weekend was our first family camping trip to Point Mallard Park in Decatur, Alabama. We had a great time, and we got to meet some wonderful birthmark buddies and their families. Check out the slideshow for the pictures. We are hoping to do it again really soon. The kids had a blast. Evan did great too. It was super hot, so praise God for air conditioning. Tristan and Ty met a little girl- Laney, who was camping two campsites down from us, and they played with her quite a bit. There were not many boys around so as usual Ty filed right in with the girls. He plays well with them. He is used to it with Tristan.
So the kids were making us laugh. They along with three other girls they met there set up a display show on one of the picnic tables. They had found things around the campsite and had them displayed for people to see. They even made out invitations and gave them out to people. To see these "treasures" through the eyes of a child was so cool. Some of the prize objects: a real live crawfish. That sucker was big too. He reminded me of those crabs in "Finding Nemo" that say, "Hay, Hay Hay" when Nemo swims by. He was snapping his claws like that. He was in a bucket of course. There were Chuck E. Cheese coins, leaves, sticks, marbles, bottle tops, and even an old bar of soap. That one kind of grossed me out. I had to not show my face when the kids were like, "Smell this mommy, it is great". All I was thinking about was whose body it had washed- GAG!! Well after I viewed the treasures, a few minutes later I had the kids come up to me wanting a quarter for viewing their treasures. So I obliged. I think they got a few quarters a piece for all 6 of the kids that were playing together. Not too bad for a days work. We had so much fun as a family that we are going again next weekend with the Groom's family. We will be watching the Florida game in style thanks to Mr. Neil Grooms! I can't wait for the kids to spend some time with their buddies. It has been a while since we have played with the Groom's boys. Watch for pictures and posts from this trip as well.
Ty's 5th b-day was last Thursday. He wanted to celebrate at his favorite place- Litton's. What can I say, the boy has taste. So we went with Kiki and Poppy and had our usual fare. The burgers were great.
Ty has been a little stinker this week at school. He has gotten into trouble a few times. His allergies are bothering him, and he is just getting so tired that he has been taking two hour naps when he comes home from school. As you can see in the title picture. He even fell asleep sitting up on Tuesday. That is no excuse though. He has to learn how to listen. Luckily, Mrs. Stephanie knows how to handle him. Tristan is doing awesome in her reading. She is really catching on. Her math is kind of troubling, but I know she will get it with time. Little Evan has decided to grow past the legal limit on his baby carrier. He went to the doctor last Wed. for a six month well check-up and he is 19lb. 7.7oz and 27 inches long. He may have been the smallest at birth, but by golly he is making up for it now. I think he will soon be buckling his momma into the car instead of vice versa. He is now rolling over both ways. So he is going to town when he is on the floor. He is also sitting up for a short period of time with a little help from me or Andy. He is trying to push through his bottom right tooth. It is really swollen so it won't be long.

My newest endeavor is trying to make streamer ribbon ponytail holders. I have made a few and am going to try my hand at some more. Here is a picture of one of them.
I got my idea from a website that sells bows. Tristan's school was selling them, and I bought one. After looking at it, I thought that I could do it and for cheaper. I did it! I am learning. I never thought I would want to be crafty, but I guess that is my momma coming out in me. It has been fun making them, and I am going to try to maybe sell some myself. I have much learning to do though. Well, I am getting ready to hit the hay. I am all tuckered out too! Until next time....
Posted by at
Labels: , ,

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

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