Wednesday, January 21, 2009

Eventful!

This one word pretty much sums up my "snow day" yesterday. We had some excitement yesterday morning if only for a short while. My friend Tracy called to see if we wanted to meet up with her and our friend Amy at the Bounce House. Of course I said yes. A couple of days stuck in the house= pent up energy among children. I was more than ready to let them loose for a while.
Evan had started out our morning by having a nice little blowout, but he was seemingly fine so off we went. Things went lovely. The kids played, played, and played some more. Tracy, Amy, and I got some much needed adult conversation. Evan just hung out in the stroller being oh so good. I should have gotten the red flag there. He is normally pretty laid back, but he was extra laid back yesterday. I had just finished feeding Evan his lunch when I heard it- another blowout. So off to the restroom we went. This is where it got interesting. As I was changing Evan he proceeded to shoot out poop halfway across the bathroom stall. Seriously, I didn't know it could go that far. Poor baby! As I was cleaning him up, Tracy came in to let me know that Ty had been accidentally kicked in the eye. Praise the Lord it was his left eye and not the right one. So as she was cleaning the blood off of one kid, I was cleaning the poop off of another.
When I went to examine Ty he had a cut right at the corner of his eye, which was bleeding pretty bad. You never know with him what will happen so Tracy called the pediatrician for me to let them know that we would be coming in (it was lunch time). I kind of got tickled at Dr. Greg b/c as soon as Trace told him she was calling for me he said, "What's wrong with Ty?" Ya think Ty goes to the doctor much? Seriously though, I couldn't ask for two more caring doctors in the state of Tenn. They have seen us through some rough times, and been so concerned just like Ty was one of their own. I digress though. After Andy had been called to come help me round up the troops, and take Ty to the doctor we were off. Evan had once again pooped. More changing going on...
Andy took Ty to see Dr. Abby while I took Evan and Tris home. At this point I was completely out of baby wipes and Evan needed a new outfit. Praise God that everything was fine with Ty. Abby said it was just a cut and would probably be swollen and bruised. That it is! I think it really looked worse than it was. Ty's PWS causes so much blood flow when he is cut. We really couldn't stop it from bleeding. I am so thankful that he wasn't hit in his right eye. I try not to think about the fact that he only has one working eye. I can not and refuse to not let him live in a "bubble" for fear of him damaging the only good eye he has. That is not to say that the fear sometimes doesn't consume me. What if?? How will it change our lives?? Ty's life?? The thoughts start running through my head. I then trust in the only thing that I know is true My God is Sovereign!!! It will be just fine.

Evan proceeded to poop and throw up most of the day yesterday, as well as run a fever. He is still running a low grade fever today. Hopefully most of the pooping and throwing up has ended. He is resting pretty well right now. So eventful summed up the day. Never a dull moment when you have children. Please pray for Evan to get over this nasty bug and for Ty's eye to heal quickly.
On another note, I wanted to request prayer for my friend Tracy along with many of my church family. They leave this week on a mission trip to SE Asia. Pray for travel mercies, families left behind at home, luggage/supplies to arrive fully and on time, and missions to be accomplished. We are praying for you all and love you guys!!!
Until the next eventful time....
Posted by at
Labels: , ,

1 comment:

Amy said...

Oh how eventful our day was! I just sat and laughed when you were describing Evan's poop episode. Good thing we can find humor when we look back on those events! I will be praying for Ty and Evan.
We love all of you!

January 21, 2009 at 11:04 AM

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