Tuesday, December 29, 2009

Jumping in to 2010

Wow! I have really been out of the blogging world for a while. I just sort of lost my mojo so to speak when it came to chronicling life at the Pritchard house. So a brief account of our Christmas is in order. We had a rather strange Christmas this year. Evan and Andy made a trip to the ER on Christmas Eve. Evan spent his Christmas diagnosed with RSV and walking pneumonia. So the usual two places we go on Christmas ended up being 0 places. It was strange to me not seeing any of my extended family. I sometimes gripe about going all over the place, but I didn't see how blessed I really am to have my family to go to until I wasn't able. The Lord knows how to put things in perspective for a person. On a side note though, it was very relaxing staying at home with Andy and the kids. I don't think we made it out of our pjs until late in the afternoon. A lazy day for sure.

Tristan just turned the big "8" yesterday, and I can barely believe how big she is. We watched the Hannah Montana movie tonight, and she actually told me that she thought the character "Travis" was cute. WHAT???? I said, "Well, you are eight years old and don't have time to think about stuff like that" Why does that part have to get here so fast? Here she is in front of our annual birthday tree picture. My cousin gave me this idea, and I love it. We have used it every year. We mark her growth each year with a picture in front of her tree.










We are looking forward to 2010, and the many things that it will bring. Andy and I will be discussing in the near future the plans for Ty's eye surgery. This will be the "cosmetic" one so to speak. He will have his lid lifted so that it doesn't droop anymore. We are not too sure when this will take place, maybe on spring break or in the summer. Ty is adjusting to Kindergarten quite well. He and his teacher are quite the buddies The kids are doing well in school. Evan likes his school too, and is talking more and more each day. I love this job of parenting. It is so hard, but so rewarding. Evan may be the most challenging and fearless child yet. I will leave this post with a little story about what little boys recovering from RSV and walking pneumonia do when they have been stuck in the house for a few days.













Evan: I love my new ball pit from Santa, and my slide from Gramps and Mimi. I wonder where

mom is at?
Me: What is that child into now?
Evan: I think I can go for it. Ready! Set! Jump!!!













Me: EVAN JOSEPH PRITCHARD!!!














Evan: WooHoo!!!!
Me: Oh my child, you just gave me a heart attack!












Evan: I sure looked cute doing it though didn't I?

Ya'll have a Happy New Year!!! Until next time in 2010
Posted by at 1 comment:
Labels: ,
Subscribe to: Posts (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