Showing posts with label reflections. Show all posts
Showing posts with label reflections. Show all posts

Saturday, November 1, 2008

Reflecting

Last night went well. We all slept really good in our own beds. Andy and I had to wake at 4:00am to give Ty his meds. It went over well, and we went right back to sleep. Even little Evan was exhausted. He slept until 8:00am, which is usually unheard of. Most of the time he is bright eyed and bushy tailed at 6:00am. When Ty woke up this morning he was pretty stiff. We helped him out of bed and downstairs to the couch. He then had a bath, and I think that got the ball rolling. After his bath he started walking a bit with his walker. He was able to walk quite a bit today. I pray that he hasn't overdone it though. As far as his spirit goes, we have our Ty Ty back! He is playing, happy, and seemingly back to his old self. The leg is still painful, but we are working on that. Andy and I are giving Ty his antibiotic through his PICC line every 6 hours. There is a special process of cleaning, flushing the line, and administering the meds that we follow. It isn't too bad, and we will be pros before long I am afraid. Ty will need this medicine for two to three weeks. I still haven't told him about being out of school. I will do that tomorrow most likely. It is really so good to be home and reflect on our past week.
It is truly amazing how much our son is loved and prayed for. Not just by us, but by so many other people. We sat in the living room this evening just looking around. It looks like Christmas has arrived. Ty has so many gifts of well wishes. His teacher, Mrs. Stephanie brought over a big basket of toys, gifts, cards, and candy from the kids in his class. To say he was excited was an understatement. The cards, the food, the offers for babysitting. It all means more to us than you can imagine. Most importantly the fact that people have prayed for him diligently touches me so much. I am so humbled and amazed. I praise the Lord that He healed Ty. I know that your prayers obviously worked. I guess we just really want to say thanks for loving our little guy, and to God be the glory for his recovery. Until next time...
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Saturday, August 9, 2008

One week since Ty's treatment

It has been a week now since Ty's laser treatment, and as you can see he is healing quite nicely. I have been intriqued by the way Ty is handling some of the questions regarding his birthmark and laser treatment. He has shown me that he is growing up, and "Gasp!," doesn't need his mommy to always answer questions about his face for him. Sometimes it would irritate me when adults would just ask me right in front of him like Ty couldn't hear them, but now I find myself wanting to answer those questions. Like Andy has said, I must let him figure it out on his own. I know this, but the Momma Bear in me wants to take all of his anxiety and hurts away. God continues to teach me daily from Ty's challenges. For instance he had Open House at school yesterday. We went into a new classroom with around 9 new kids that he has never met. He was so great. One little boy innocently touched Ty's face and asked him what was on it. Without missing a beat Ty just told him it was his birthmark and the little boy was fine with it. I long for the simplicity and acceptance of children sometimes. They are so sweet, and just take things for how they are- no questions asked. I think that Ty will have a great year. His teacher, Mrs. Stephanie, is such a loving, kind, and patient person who loves her job. I know she will be great for Ty.
We haven't met Tristan's teacher yet, although I have heard wonderful things about her. We will meet her Tuesday night at Tristan's open house. We are winding down the summer. This Wed. school begins. We are praying for a great year for her as well.
Little Evan is finally big enough to play in his exersaucer. He has liked the new toys and chances to play. I think he is ready for the peace and quiet in the house that school will bring. That will be a new thing for him.
I just wanted to say, Happy Birthday Grammie. We are celebrating later this evening with dinner.
As I am typing this it is so quiet in my house. Andy is working today, Evan is napping, and Tristan and Ty are spending the night with their Kiki and Poppy. I am reminded of the simplicity of life with one child. Oh how easy those days were, even though I remember struggling to get things done. It is amazing how God teaches you to adapt your life to the changes He brings into it. Now I can't imagine life without three kids. It has it's moments, but for the most part is no more difficult than having two children. I get this question alot. I guess people think we are crazy to have more than two children. For Andy and I it is such a wonderful blessing to watch these little people grow. We praise the Lord for all three of them.
I want to ask everyone to pray for all of the children and teachers who will begin school this week. May everyone have a wonderful transition from summer to work/school. Until next time...

G
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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