Evan loves to sing, and like any proud parent.... I thought I would share his favorites with you. (Don't forget to pause the music on my playlist)
Tuesday, September 21, 2010
Saturday, September 11, 2010
School Already.....
Last but not least is my final update on Ty's eyes. I am so sorry that I have been so bad at blogging and keeping up to date on this. I know that many people check the blog for the purpose of finding out how they can pray for our family. I will try to do better at that.
Long time no talk....
The one stipulation to Ty swimming was that he had to wear goggles. Sounds easy enough, but this began my whole summer of this, "Ty, put your goggles on". I swear it was every 2 seconds. It is more difficult than you might think to make sure a 6 year old is wearing goggles and protective glasses at all times.
Evan's favorite pastime was drinking the pool water. Yes, it is gross I know. Let's just say that he had no problems filling those diapers up for me!!!
We spent the summer going back and forth to Dr. M here in Knoxville, and Dr. R in NYC. Almost every week we were at the doctor somewhere. Andy and Ty made many up and back in a day trips. Ty would rather go with his daddy. Apparently, I am too stressful for him. HA!!!! Never!! I do get stressed out a little. I am very thourough with my question asking. I am sure those docs love to see me coming. We kept receiving great reports and Ty was finally able to stop his liquid medicine that he was taking four times a day. He also was able to stop one of his eye drops. His pressure continued to come down all summer. It is currently at 15!!!
One of our NYC appt. was over my birthday weekend. We decided to take the whole family and drive there. We made a stop in Amish country on the way back. That was really fun. The kids enjoyed it and it really was beautiful!! We could learn alot about simple living from the Amish. We took a horse and buggy ride through the country and it was cool. The kids did well and thought it was great. Here we are waiting for our turn!
Next up was another trip to Destin, Fl with Andy this time. We also invitied my mom and step-dad to come along with us. It was so nice having Andy with me this time. I really missed him on the first trip. I loved spending time on the beach reading with my mom too. It was very restful.
We had lots of Splash Country trips with our friends this summer while little Evan stayed home with the babysitter. He is not quite old enough for me to take to Splash Country all day long with the big kids. All in all it was a great summer. After Ty's surgery Andy and I both had the mindset that we were gonna make this summer as fun and memorable as we could. We have no clue how long his eyes will be stable. I want him to have wonderful memories of his childhood. I praise God that he has blessed our family to be able to do that. We want to thank you all so much for your prayers, thoughts, and just caring about our family. Up next.... school already, Ty's latest appointment, and Ty's 7th birthday!
Sunday, May 9, 2010
The Light
So when we walked through the door that evening the first thing that I saw was Evan's haircut. Andy had given him a bath and let it dry straight down the front of his head. The curls were all combed out and it looked awful. Plus I was a little emotional. Poor Andy wasn't sure who had just come through the door; his wife or a two-headed dragon. I did apologize afterward, and when I did fix Evan's hair myself it was fine. It looked so much better. It just goes to show you men, 1. Don't mess with our baby's hair 2. Hormones are ugly!
That next week, April 26-30, Ty was able to begin half days at school. He did very well, and really missed his friends. He finished the week by going the full day on Friday. I had asked for lots of prayers for Ty at school. The whole, "keep him calm" thing was really freaking me out. I was living on the edge of a possible accident at all times. Finally, after what I am sure was tons of prayers from friends and family I just had a peace about the whole situation. God showed me that this was one more thing that I can't control. I can make sure he is out of harms way as much as possible, but I can't control anything that will happen to him. I just have to trust God. That is what I have been doing about this situation, and although I have my days some times it has been so much more freeing to rest on HIM.
Thursday, 4/29 rolls around and it is Ty's appointment with Dr. M here in Knoxville. Great news there! Ty's pressure is now at a 14/15. Everything is looking great, and we are to go back to NYC next week on 5/6 for another checkup and possible medication changes.
Once again Ty and I went to NYC ourselves this past Thursday 5/6. Ty's pressure was at 15 again. His vision is now at 20/30, which is what it was before surgery, and we are on track to removing another one of his glaucoma medicines. We see the Knoxville doctor again on Friday, 5/14, and if the pressure is still at 15 they will attempt to remove a medicine. This is huge! We will then go back to NYC on Thursday 5/27. He has been cleared to swim in chlorinated pools which is wonderful. First off because we have a pool, and secondly because he is a six year old about to begin his summer vacation. How do you tell him that he can't swim? I was dreading that one. Now, I am on a mission to find some super cool goggles that stay put while swimming, and that won't cut his face into. He has a very large head, so I will probably need to buy adult size. I am taking any recommendations for goggles for sure. Send them my way! We are definitely seeing the light at the end of this tunnel. Obviously, this won't be our last tunnel, but we are winding down in this one. God has been so faithful to heal our Ty. I have heard many comments about how Andy and I are such great parents. I am thankful for these comments and humbly accept them. What I want to say in return is, "We have an awesome Father who teaches us, and if we are good parents it is only from Him". I will certainly try to do better in my postings. As always thank you for praying for us. We are on the countdown to summer vacation now. Only two more weeks. Ty actually has Kindergarten graduation on 5/18. I will definitely be posting on that. So until next time.....
Friday, April 16, 2010
Whispers, A Funny, and a Little Bit of Normal.
Remember how I was talking about when you really feel like you can't make it another moment, God knows this and He will either flat out drop something in front of your face or He will whisper something to let you know that He is there? Well we had four little whispers while on this trip. One happened to me, and the rest of them happened to Andy, but since I consider us a team they trickled over to us both. I already said how we stayed in NJ this past time, and how we had to spend the night in the hospital after Ty's surgery. Well of course I had nothing with me because I never intended to stay there. So off my sweet hubby goes back to NJ to grab me a toothbrush, clothes, things for Ty, and my all important phone charger. My battery was just about dead. So I knew it would take him a couple of hours to get back, and I had told him I was gonna turn my phone off to save power. So in walks Ty's nurse. I love to educate the nurses about Port Wine Stains, Sturge-Weber Syndrome, and glaucoma. Most of them have NO clue. Neither did I though. Even being in this NYC hospital where there are quite a few cases of it, most of the nurses during Ty's hospital stay didn't know what was going on with him. We started talking about it and just general conversation led to the fact that she was from the exact same area that we were staying in NJ. She gave us very helpful information for future use about the buses. NYC transportation info to a southerner is like gold. Cabs can be expensive. So having info about bus routes, subway routes, etc. is great.
My whisper came in the form of Ty's nurse. I was kind of stressed about my phone dying and me not being able to contact Andy. Yet, I didn't like having it turned off to save the power either. My nurse happened to look down and see my phone. She said, "I just got that type of phone and I love it dont' you?" I said, "Yes, I do, but I forgot my charger and I have it turned off right now b/c the battery is dying" She then says, "I have mine with me and I am here until 11:30pm, I"ll let you use it to charge your phone". Wow! I was so excited. God provided something so small as a phone charger to let me know He was meeting our needs.
Andy's whispers happened while Andy was on his way back to NJ. He hopped in a cab, and it turns out that the cabbie had on Praise and worship music. NYC is very diverse and the chances of him catching a cab with a Christian driver are almost impossible. Nothing is impossible with God though because not only did Andy catch one cab with a Christian driver, he caught two cabs with Christian drivers. God whispered to Andy twice. Both cab trips brought forth talk about our trials with Ty and about God and trusting Him. It was a wonderful refresher for Andy and also a wonderful moment for God to show us that He will never leave us nor forsake us even in a NYC cab. The last whisper for Andy was when he drove down to catch the ferry. You have to pay to park your car and then you can catch the ferry. The attendent struck up a conversation with Andy, and when she found out what was going on she didn't charge him to park. I know these things sound little, but they certainly were our Whispers from God. Our encouragement during our trials. He amazes me! Did He have to do it? No, he didn't. Did He want to do it? Yes, because He loves us! Just remember those truths when you are facing trials of your own.
Now on to my funny! It is actually on Andy. I am sure he could find plenty on me, but since he doesn't write this blog- AH HA HA! I get to tell the funnies. Andy is the king of tickets in NYC when we drive there. You put a country boy in the big city, and I guess it just comes out. Most of ya'll that know Andy will agree with me when I say that he is always on the phone. Well guess what folks? Ya can't talk on the phone in NYC or NJ while driving. It is against the law! So Andy had a traffic cop pull him over. The cop asked Andy, " How do you all do it in Tn. with the cell phones when you drive" So Andy says, "Well, in Tn. we are coordinated and can talk and drive at the same time" The cop just laughs and says, "Well since you are in NJ now and it is against the law to talk and drive what are you gonna do" Andy says, "I am gonna hang up my phone and put on my seat belt and drive away" The cop says, "Then go on and get outta here". Whew! Andy was saved from another traffic ticket. We found out later that cell phone tickets are a pretty pricey ticket. We were so blessed that Andy had a cop with a sense of humor. Not everyone can appreciate Andy's humor at times! Another cool thing that happened. The lead singer of the group U2, Bono, was in the office at the same time Ty was. Dr. R was going to introduce us, but I told him Ty had no clue who he was. I am not a big U2 fan. I don't dislike them, but I just wouldn't run out and buy a CD. They did however say that Bono was extremely nice. So to all of you U2 fans out there, I thought that was kind of cool.
Ty is doing really well after his surgery. We had a post-op visit with his Knoxville doctor this past Monday, April 12. The pressure was at 28 that day, but Dr. M wasn't too concerned. He felt that it would come down. On Tuesday, I took Ty to school so that he could eat lunch with his buddies. He did just that, and then we went out to swing on the playground with his friends and then to library. He had so much fun, but he was exhausted afterwards. He has been sleeping around 2 hours each afternoon. His body needs the rest, and honestly it makes me feel less anxious when he and Evan are sleeping at the same time. Trying to keep those two from wrestling and playing is making me a nervous wreck. His little buddies at school were so excited to see him, and he was just as excited. He misses school. Hopefully by the last week of April he can go back for a bit each day. Andy and Ty made the trip up to NYC this time without me. I stayed home with Tristan and Evan. They left on Wed. and Ty's appt. was Thursday morning 4/15. We got awesome news! Each day Ty's sight has been improving. By Wed. he could slightly see the t.v. and by Thursday morning at the doctor his vision was 20/50. He can now watch t.v, play his nintendo, and see large numbers and letters. It should improve more and more as his swelling goes down and the healing continues. The best part of the news was that his pressure was down to 18!! The doctor would like it to come down to 15. We are getting closer. His doc also discontinued one of his glaucoma drops and the antibiotic drop that we were giving him. So now he is on 1 drop three times per day, 1 drop every three hours, 1 drop at bedtime, and liquid medicine 1 tsp 4 times a day. The hope is that we can discontinue all of these medications and still have low pressure. Dr. R wants to see Ty back up this coming Thursday on 4/22. This time I will go with Ty while Andy stays home to work. This will be my first solo trip to NYC. I am confident that it will be fine though. We are continuing to have good news and see Ty come back to being that mischeivious, rowdy little boy. God is so good! Thank you so much for all of your support and prayers. We could not go through this without the awesome support we have received. I will continue to keep everyone posted. Until next time.....
Saturday, April 10, 2010
Now....We Wait!
He will continue to regain his vision as he heals. It sure is hard to keep an active 6 year old boy still! That is another of my prayer requests. Also for WWF between Ty and Evan to be on hold for a bit, or in other words no wrestling matches. Ty will see his Knoxville doctor on Monday, and then he and Andy will head back to NYC on Thursday for a recheck. We pray that we continue to see healing and also decrease IOP. I am gonna wrap this post up b/c it is soooo long that ya'll are probably tired of reading it. First though, I want to thank all of our prayer warriors. I especially want to thank the staff and students at Grace Christian Academy and Grace Preschool for praying so hard and for loving our boy!! There are many more too that I have on my heart to thank. In the next few posts, I would like to share some of our "whispers from God" and also a good funny that Andy did. Before I go I would just like to encourage you to really get to know GOD!! All things are possible with HIM. We could never go through this without HIM. Also search out the different names of GOD. If you didn't know He has different names, well you do now. Although they are all specific to us the one that stands out the most is The Lord Who Heals, or Jehovah-rapha!! I encourage you to get to know all of His names. A great book for this is Kay Arthur's, "Lord, I Want to Know You"
Until next time...
Tuesday, April 6, 2010
He makes all things new
I hope to update everyone as soon as I can. Surgery will last around 2 hours. Please pray for a miracle for surgery and for Ty's vision. We certainly serve an awesome God! Thank you more than words can say. We love you all!
Until next time.....
Ty's birthmark
Tyler's Birthmark
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/