Tuesday, June 9, 2009

Seriously Behind...

Yep, that is what I am. I took a little hiatus from blogging. So much going on that I just enjoyed reading some of my favorite blogs from my friends for a while. Now, I'm BAAACK!! Look out!
No seriously, much has gone on since my last post. I will start with a wonderful praise.
We took Ty to see his local glaucoma doctor for a checkup at the end of April. He checked the pressure in his right (good) eye and it was an astonishing 19. This is astonishing in a good way. You see normal is 21 or below, and anything above this starts to cause damage to the optic nerve. Damage to this nerve in turn causes vision loss. So the last time it was checked in December it was at 27. Needless to say we were kind of concerned about that. We did our fair share of praying about that pressure number. I am just not ready to tackle the "what ifs" regarding high pressure. I keep thinking to myself, "We just got one good eye here that we are dealing with". For now, God does not think I am ready either. So we all press on! Ty is amazing!
Praise God that everything turned out okay, and we don't have to see his glaucoma doctor in New York. We are due back for a check up here in June. Things are stable for the most part, and I am going to call soon to set up his next laser treatment. Hopefully, I can get it sometime in July or early August before my baby starts Kindergarten. His last treatment was over Thanksgiving, and he is due another one.
Kindergarten- I can't believe it! I will have a second grader and a Kindergartner. Wow! the time just continues to fly on by. The kids are so much fun, and I thank God everyday for giving me a hard working husband so that I am able to stay at home and raise them. It is such a rewarding 24 hour a day job that I wouldn't change for the world.
Summer though is kind of my little mini vacation from the hard 24 hour job. We have nothing but FUN! FUN! FUN! Swimming in the pool, going to Dollywood and Splash Country, camping, hanging with friends, going to the lake, barbeque's, staying up late, and sleeping in. I really just love no schedules. It is great. So to start off our summer fun we went to Destin with my sister-in-law, brother-in-law, and niece.










This is our second annual trip over Memorial Day. It was so much fun. Evan was the funniest. Since he was only three months old last year, he really didn't even care he was in Destin. Not so much this year. He loved it! His favorite part was climbing in his beach chair and watching all of the "babes". He was too cute, and he would just sit there for at least an hour or two. I loved it too because I didn't have to chase him everywhere. I just got him a pail full of ocean water, a shovel, and his beach chair. He was happy as a clam (no pun intended). That and his snack of sand. He didn't seem to mind though. The next morning's diaper was pretty interesting. I think he managed to get sand in every orifice imaginable. We had a blast though just relaxing, playing, and catching up with our family. My mom also got to come down for a couple of days to join us. That was really great. The kids had fun playing with their Kiki on the beach.

I am so thankful for my amazing family. What a joy that God has given to us exceedingly and abundantly more than we could ever need in each other. Thank you Lord for the gift of family! Until next time, and I promise it won't be two months later.....
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4 comments:

Mercer Family said...

That is great news about Ty! Praise the Lord! I can't wait to see more blog updates on your fun and relaxing summer!

June 10, 2009 at 10:18 AM
Amy said...

What a great family picture of you all at the beach! I am so happy to hear Ty's news! The Campbells LOVE that kid!

June 10, 2009 at 2:39 PM
Jenny said...

That is wonderful news about Ty! He is such a cutie! And I love your family picture. You have a beautiful, sweet family! Love you all!

June 11, 2009 at 6:33 AM
Tracy Grooms said...

You guys are such great friends! We love you all and can't wait to spend some time together this summer! Love you!

June 11, 2009 at 3:59 PM

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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