Ode to Jesus- Evan style

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)

School Already.....

I can say that I am so totally thankful and blessed to be able to stay home and raise my kids. It is an experience that I wouldn't trade for anything. That being said, although the title states differently, I was ready for school. I knew I would miss them, but there is something to be said about a routine. Especially when you are as Type A as I am. So here we go with the First Day of School!! Tristan would be starting 3rd grade and Ty 1st grade. Dum Da Dum Dum Dum.....

My immediate thought on this was, "Ahh! I have the odd grades together this year". As some of you have been told, the odd grades seem to be more challenging. I swear half the time I help them with their schoolwork, and I feel like I am back in school. It is time consuming for sure. Both of the kids got great teachers, and we are looking forward to an amazing year. Although I may be pulling my hair out with all of the work and learning this year.

Evan also started Parent's Day Out this year at Grace. He went to PDO last year at our church, First Baptist Powell. They have an amazing program, but I knew I wanted to have all three kids at one place. So I made the switch. Evan has a great teacher, and has had so much fun so far. He has made two little friends already, Mason and "Booger". Yep, you read that right! He kept telling me that he played with Mason and "Booger" everyday. I would say, "You played with Parker". Evan would keep telling me, "NO, Booger!" Finally I decided to ask Mrs. Diane, his teacher, who this Booger kid was. She died laughing. Turns out the little boy's name is Booker! Whew, I was nervous that Evan was picking his nose, and he and his new friend Mason were proceeding to play with it. Thankfully, that is not the case. Here is Ev on his first day. Notice the backpack is bigger than he is.

Mrs. Diane sends home a newsletter each Thursday.(Evan's PDO is on Tuesdays and Thursdays) This past one says that one of the goals for the end of the year for her class is for all of the kids in there to be potty trained. I had to horse laugh on that one. Evan is more than ready, and actually has peed and pooped on the potty for me some, on his terms of course! He would much rather come to me and say, "Mommy, I poo in my diater.. please change me!" He is killing me. So I plan to keep tabs on the whole potty training thing. In fact, Ty was 3 1/2 years old. It was the longest time in my life I swear!! I hope E doesn't follow the same path. Training boys in my experience is no piece of cake. Maybe Mrs. Diane will have better luck.

I will say though that boys are so easy to please when it comes to planning things for their birthdays. Ty turned 7 years old on Sept. 4. Instead of a big friend party, we opted to take him to his first UT football game and then have family over on Sunday. He was so fine with this. I loved not having to plan a big party either. Here is a look back on our baby boy after his first laser treatment at 2 1/2 months old, and then at the UT game this past Saturday.

My how we have come a long way, by God's grace only, in such a short time. He has been through so much in his life, but God has given him amazing character. It makes me cry every time I think about how God has equipped my Ty to handle what he was born with. Our God is an amazing God who promises not to give us anymore than we can handle when we put our ultimate trust in HIM.!!! Is it hard to do? Yes, sometimes it is, but I can't imagine tackling these trials in our own strength, and I am so thankful that Jesus is there to catch me when I fall!!!

Here is a picture of Ty showing off his dance moves and his personality. It is never a dull moment with him for sure.

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.

So can I get a drum roll please................................... As of Ty's last doc visit this past Thursday, Sept. 9, his pressure is at 16, and his vision is 20/30. He is only on two drops. One he takes three times a day and the other one he takes at night. He will see Dr. M here on Oct. 22, and then he will go back to NYC on December 16 to see Dr. R. He will have another visual field test and optic nerve pictures to determine if any changes have happened. Oh yes, and he will have another laser treatment with Dr. G. The laser treatments have kind of fallen to the back burner, but I want to make sure we at least maintain the progress that he has made. So I have to fit in at least one per year. It makes it hard now with school. It will be an appointment close to Christmas time, and NYC is so neat at that time of year!! I promise to keep you all updated from now on. Ha!!! So until next time...........

Long time no talk....

Wow! I am sure behind on my posting. I think somehow life has been getting in the way. Do you ever have so much to say, but when you think about journaling it out, or typing it out in this case, you just feel overwhelmed? Well that is my excuse!

So much has happened since my last post. First of all, we had an awesome summer. When I left off the last post Ty had been cleared by his doctor to be able to swim. He was so excited, and frankly so were we. Imagine telling a 6 year old he can't get in the water. Not my idea of fun for sure! So at the last minute we decided to go on our annual trip to Destin, Fl with my BIL, SIL, and niece. We have gone for the past two years all as a family and have had a blast. Andy unfortunately had to stay home this time to help his mom out. He insisted that we go on and we did. I made the drive to Destin by myself. I thought I did pretty good though. That was my longest trip driving by myself. Tristan went on down with Jimmy, Susan, and Rachael so it was just me and the boys. All I can say is that Honeynut Cheerios in a ziploc baggy, milk in a sippy cup and thermos and plenty of DVDs helped out a ton. We had a great time as you can see below.

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!

The Light

Hey all! I know it has been a while since my last post. I am so sorry, but I have been working like crazy going to doctor's appointments, winding things down at school for the summer, etc. So I will start from my last post. The trip to NYC on 4/22 with just me and Ty went really well. We left Knoxville at 6:30am and arrived in NYC at 8:30am. We went to the doctor at 10:00am, and then afterward had our lunch at a pizza place. We hurried to ToysRUs in Time's Square, one of Ty's favorite places, and then it was back to the airport to catch our departing flight at 2:00pm. We were home by 7:00pm. Dr. Ritch was pleased with what he saw. Ty's pressure was at a 16, which was great news and by all accounts they think the surgery is doing it's job. He even gave us a week off from NYC which was great. When we got home we were both exhausted. Those up and back in a day trips are hard. I think what made it even harder was that while I was gone Andy decided that he would be helpful and take Tristan and Evan to get their hair cut. Now Tristan's hair is not a big deal to cut. Just trim a few inches off and it is good to go. Evan, on the other hand, is my curly-headed boy. Yes, I know it was l-o-n-g, but still I was terrified to have it cut and lose his curls. I look back now and laugh at myself. It is just hair after all. I know it sounds silly, but it was like my one thing to control. I had been through so much stress with the surgery, trying to keep Ty still and calm (ha!), and things in general that I couldn't control. It just felt good to know that I could control the length of Evan's hair. Ha! It sounds crazy now. I mean when I think about it I should have gotten a clue when people continued to say, "Oh, she is so cute" I would just smile and say, "thank you". All the while I am thinking, "Seriously! he has cars on his shirt and is wearing blue! He is obviously a BOY!!" I don't think I wanted to see how long it was. For example: Evan in exhibit A could probably produce a couple of pigtails very nicely.

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.....

Whispers, A Funny, and a Little Bit of Normal.

Hey everyone! Boy have we ever been blessed with some BEAUTIFUL weather here in East Tenn. now if we could get rid of the pollen that would be excellent. I wanted to share a couple of our "surgery trip" stories with you, and then give you another update on Ty in this post.
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.....

Now....We Wait!

We arrived back home last night around 11:30pm to the beckoning of our beds. Whew! how I missed my Select Comfort mattress! As with all of our NYC trips we have some interesting stories to tell. Many of them in the form of "God's little whispers". You know the moments when you just need Him and think you can't do it another minute, but then He lifts you up to new heights? We got a few of those blessings to encourage us. Oh yes, and thank goodness for Blackberry technology and Facebook, which allowed me to keep informing our many prayer warriors. Your prayers were certainly felt. So this will be long, but I want to start from the beginning. Pull up your chair and get your popcorn- Ha!

As I stated before we had decided to stay in Edgewater, NJ this time to help cut some of the costs of staying in Manhattan. The room was really nice and we could ride the ferry boat over to the island. The morning of surgery we did just that. We had some glorious weather for NYC. In fact, it was a record high of 92 on surgery day. The ferry ride over was so neat. The Manhattan skyline was neat to see from the river, and Ty thouroughly enjoyed himself. The whole ride on the ferry was around 10 minutes, but from the hotel to the hospital in took an hour to get there. Much longer of a commute than our usual Manhattan 7 minutes. Once we arrived at the hospital it was business as usual. We checked in, and prepared for our wait. It was 9:00am and surgery didn't start until 11:00am. Oh, and mother of the year here forgot Ty's Nintendo DS at the hotel. Luckily, I had some Bakugans in my purse and all was saved. We tossed the Bakugans back and forth for HOURS!!! Oh what kids never get tired of doing!!!!

Dr. Ritch was running a little behind so finally at 11:45am Ty went down for surgery. It is really neat in NYC because the parents are allowed to "suit up" and go into the O.R. with their child until they go under general anesthesia (GA). As we go to the room the nurses all were so excited to see Ty. The last time they saw him he was 3 1/2 years old. They couldn't believe he was so big. Neither can I really. Time sure does go fast. So the nurse anethesist put chocolate flavoring on Ty's GA mask and showed it to him. He was so funny. He was like, "Yummy! my favorite" and he pretended to lick the mask. It did smell good. I am sure he was hungry too because he had not had anything to eat or drink since around 8:00pm Tuesday night. He fell right asleep, and I was escorted out to wait. The surgery took around 2 hours to perform.

Dr. Ritch called me when it was all over and told me that things went "technically really well" and that he was on his way to recovery. Oh yes, and that he had videotaped the surgery and we would get a copy. Now I realize that sounds probably disgusting to some of you, but I think it is too cool. I love to watch stuff like that.

They had given Ty morphine so he was out of it for a while. In the recovery room we learned that Ty was going to stay all night at the hospital. Remember we were staying an hour away in NJ. With all of Ty's surgeries we have never had to stay overnight. This was a first for us.

They moved us upstairs to a semi-private room to let Ty recover. Things went well until they moved another family in who spoke Indian. Let's just say they didn't speak quietly, and I am not really sure they knew much English. Welcome to NYC, a diverse melting pot!

Ty woke up to a foreign language and no vision. To say he was frightened was an understatement. He cried out to me and reached for me! Oh my, it was so hard to watch. He started to cry and tell me he was scared. We prayed together which helped him calm down, and thank goodness I brought his I-pod. I plugged his earphones in and turned it to Chris Tomlin. He finally fell asleep. Later the Indian family left, and no one else was placed in our room. Thank goodness.

He slept in and out for a few hours while Andy had left to go get me some clothes and other things for our overnight stay. At this point we both were really wishing we had stayed in Manhattan. Ty woke up again and this time he really felt bad. He threw up twice. It turns out he was having a reaction to the anesthesia. This was another first for him. He has been under GA so many times that I have lost count. He has never thrown up before. He was ordered some meds and was able to sleep through a LONG night. I had the chair beside him. The next morning he threw up two more times. So we had to stay at the hospital all day long to make sure he stopped vomiting and also to monitor his glaucoma pressure (IOP). All day long the docs were giving him IOP checks.

Now I want to give you a little background on his surgeries. He actually had two things done. The first one is the shunt tube, which some of you remember that he had in his left eye. The shunt is our backup method. The other procedure is called a deep sclerotomy, or "window" as I call it for short. They basically make a window in the eye to make a drainage port for the extra fluid, which is causing Ty's increased IOP. They are hopeful that this will work. The waiting game is on now because in order for us to know if it works will not be evident for 1 to 2 weeks. After the "window" surgery the IOP tends to go high. This is normal the docs have said. They were impressed by the fact that Ty's IOP never climbed above 29, which is what it was running before surgery. So they put him back on all of his meds in order to bring the IOP down again. Also he has major swelling in his eye, which is contributing to the high IOP. They have told us as his swelling decreases then the IOP should decrease too. If it works, then they will slowly wean Ty off of his meds. The docs goal is to have his IOP at 15 and to not be on meds. This would be awesome!!!!

As far as his vision is concerned it is very blurry. He was able to open his eye Wed. night briefly and see me and Andy. This was a huge praise. The eye is extremely sore and feels as if he has sandpaper in it. This is from the stitches and the swelling. He kept it closed most of Thursday and Friday, but this morning has opened it a little bit. He has to wear a clear plastic shield over it. This is what it looks like. His lips were also extremely swollen from the GA.

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...

He makes all things new

Well we made it! After 12 hours in the car and getting lost in New Jersey, we arrived at the hotel tonight around 8:40. Our plan is to ride the ferry boat into Manhattan tomorrow morning, and then catch a cab to the hospital. We need to be there at 9:00am and Ty's surgery is scheduled for 11am. We had a good drive up today. It really wasn't that bad. I always find it amazing how God works. I was rather dreading the long trip up, but I had an unexpected moment during my turn to drive. First of all, there is not much to do when you are driving and everyone else is sleeping. So I figured that this would be a perfect time to pray! I had been having just a bit of anxiety about Ty's surgery today, but God is so sweet that in this quiet, driving time while Ty and Andy slept he showed me a couple of things that I would like to share with you all. First he brought to my attention this verse from Philippians 4:8 "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things" So in that moment when I heard these words I chose not to be afraid! To trust on His truths. Will this trial be the outcome that my heart desires? I am not sure. Will this trial be the outcome that God desires? Absolutely!!! He also showed me along my drive the promise that He makes all things new, which is evident in His creation. It sounds so simple that I had a profound moment while driving, but I literally drove along looking at the red bud trees blooming, the forsythia ( those yellow bushes), and the blue, cloudless sky. I just had to praise the Lord that He is in control of making all things new. The flowers, the grass, the trees, etc., which are all evident as we are beginning our springtime. Most importantly, He is perfectly capable of making Tyler's eye new if He so chooses to do this. It was a wonderful worship moment for me in the midst of a time of unknowns. I may not know what lies ahead for Tyler, but I do know God's Word. That my friends, is a refreshing feeling.

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.....

Whirlwind!

Hey all! I feel like I have been through a whirlwind this past week. I want to thank all of you for your support, kind words, and strong prayers. What we found out from Ty's doctor was less than wonderful news. News that in my heart I knew was coming, but news I really didn't want to be prepared for. After we arrived at the doctor at 9:00am Ty had multiple tests. His pressure was still at 29. He had a visual field test that determined he has lost some peripheral vision due to his glaucoma. The last optic nerve pictures that NYC has are in July 2008. They took some more optic nerve pictures and found slight changes that would be consistent with this vision loss. This is what glaucoma does to the vision. It takes the peripheral vision first and then slowly starts tunnelling away until the vision is no more. This is of course if the pressure remains uncontrolled, and the optic nerve is damaged. Once the nerve is damaged, it can't be reversed. On a positive note his full on frontal vision is 20/25. That was great!



Basically, Ty's Sturge Weber Syndrome( http://sturge-weber.org/index.php?option=com_content&view=article&id=15:glaucoma&catid=3:conditions&Itemid=8) has caused his glaucoma to be out of control. All of the methods of controlling his pressure have failed. He is already on the maximum amount of medication that he can be on so the next step is surgery. His doctor's will perform a deep sclerotomy and place a Baerveldt shunt implant into his right eye. He will have this done on Wed. April 7. These procedures will work to drain the excess fluid in his eye and hopefully regulate his pressure back to normal ranges. I will post more about these procedures and their risk of complications as I learn more.

As you can imagine I have many questions for his doctor. So I have emailed him to find out all of these answers. I know for now that Ty will have blurred vision for approximately two months after the surgery. This is a serious issue for him due to the fact that his right eye is the only eye he has that functions. I am not yet sure what this will mean about finishing his Kindergarten year. Praise God he is doing super in school, and he is where he needs to be in his reading and math. He only has 7 weeks of school left. I do not know if he will be able to go these last 7 weeks or not. This will most likely be a wait and see thing regarding the outcome of his surgery.

Needless to say, Andy and I are scared. We know what the worst case scenario is, and we don't like it! The worst case is that he will be blind! The best case is that this surgery will stabilize his eye. It is so hard to trust in the unknown. I am so grateful for God's sustaining grace. I am so positive that I could not function without it. I know that ultimately Tyler belongs to God. I am just the "honored Earthly guardian". I also know that whatever God decides to do that He has a complete purpose for it. Andy and I will never quit praising God's name even if He allows Tyler to go blind. For you see if you will study Sturge-Weber Syndrome you will know how much worse it could be. Tyler is a miracle already compared to some. However, this doesn't mean that we will not be pleading with God to save and protect his eye. We ask for you all as our prayer warriors to do the same. I plan to update this blog with every detail that I get. For now we ask that you pray for Tyler and for us. Pray for the surgery to work without complications and the pressure to stabilize. Until next time....

Prayers for Ty

Ty had his check up today with Dr. McDaniel, his Tennessee glaucoma doctor. Things are not looking too great for Ty regarding his eye pressures. He has consistently had high pressures for the past 4-5 months. The readings have been around 28-29, which is definitely too high. Anyway, Dr. M. believes that it is no longer possible to put off the inevitable. It looks like surgery is most likely in Ty's near future. A trip to NYC has been scheduled for next week to see Ty's NYC doctor, Dr. Ritch. We will leave on Wed. 3/24 to make it to the appointment on Thursday 3/25 at 9am. This will be an assessment regarding which route we will need to take for Ty. Dr. M here in Knoxville did not want to make the call, and wanted Dr. R in NYC to make this call. Will it be surgery? Will it be more drug therapy? I know for certain we can't add a drop. He is already on the highest amount of drop medication allowed. We just don't know until Dr. R checks him out. We are praying for a miracle as we have prayed for before. I know it can happen because I have seen it first hand with my precious buddy. Obviously, surgery is the less than desired outcome. I also am realistic. Ty's last surgery for glaucoma in his right eye was in 2005. He was not even two yet and now he is 6 1/2. The right eye has always been the better eye. It never has needed too much attention after that first surgery. I knew it wouldn't last forever though. You know how you can just get in a comfortable rut though? I was so comfortable in having that part of Ty's life on hold for a while. It has been nice not having to fly to NYC every few months. I guess I am scared. I will not lie. This is a very stressful time for us as a family. On one hand, I know the Lord will guide us through- His Word promises this! On the other hand, those little moments of fear creep in. This is the only eye that has vision! What if... What if... What if...????? I ask that you would please add us to your prayer lists once again. For many specific things: 1. That I would let this fear completely go and trust God Almighty specifically leaning on Jer. 29:11. Such a hard thing to do even when I know it is the right thing. 2. For my emotional strength- Ty is old enough now to really grasp what is going on. He can see me break down when I start to. I pray to hold it together in front of him. 3. For Ty's strength. God has blessed us with a child that can make it through many tough things. I pray for his resilience once again. 4. For the possibility of controlling the glaucoma with more drugs instead of surgery. 5. For Tristan and Evan who will be staying home this time.
We know we have unbelievable support with our many prayer partners, family and friends. It means so much to us. I will be posting the outcome on the blog. Thank you so much and God Bless!

Ginger

Thoughts

Folks, there is definitely a problem when your two year old comes to get you and he is holding a refreshing cup of TOILET WATER!! Yes guys! Evan drank out of the toilet using a bathroom dixie cup. Oh my! at least Ty remembered to flush it for once. I so wish I would have caught this evidence on camera for future use during the teenage years.

Until next time....

Lessons in Life

Whew! what a jump start on 2010. We have been spreading the wealth of sickness here at the Pritchard house. Even my computer seemed to feel the need to catch a virus or two. Now I am back online. It is funny how you feel so out of touch with everything when you don't have your computer. Although God showed me in my week without it that I could function. Sometimes it is a little too convenient to play on Facebook or Blogger when I need to be doing other things that are required of me. I just love those lessons. I don't love them when I learn them, but when I ponder and reflect on it I am so grateful.
I am getting ready to head out to my annual Camp Crop-a-lot weekend at Carson Springs. Not all of my besties could come this year. Ya know who you are, I will miss our sweet fellowship. I do have two of my girls going though, and we are really looking forward to it. I LOVE Carson Springs. It is one of the only places that I can actually cover up using the sheet, blanket and "gasp" the bedspread. I have a thing about covering up with hotel bedspreads. It grosses me out!! Don't ever watch those true shows on Dateline. They will change your life. Anyway, Carson Springs is so clean and quiet and nestled in the mountains that it just makes me relax. What better way to spend a relaxing weekend than scrapbooking, lounging, eating, sleeping, and getting hardly any cell phone coverage. It is so great. I am so thankful that God has blessed me with a loving hubby who loves spending time with his kids. Who also loves me enough to know that I need this time each year. He is probably the most selfless man I know by always putting me first.
On another note, we have a semi-update regarding Ty's ptosis of the left eye surgery. It is scheduled for July 28. Dr. Palu will perform the surgery that Wed. then Ty will see him the next day and then again one week after surgery. I am so excited for Ty. I just want him to be able to have a normal looking eye. We talked about it the other day, and he wants the same. He told me he really doesn't like it when people ask him what is wrong with it. It makes him uncomfortable. I can relate in a way, but only a motherly way. It doesn't make me uncomfortable, but it irritates me at times. Example of last week: Andy took him to Wal-mart. (yes, I know consider the source) The cashier went on and on b/c some people don't know when the right time to shut it is. He just blurted out with, "What's wrong with him?" Ooooh, that is my all time worst comment. The fleshly part of me wants to say, "Nothing, what is wrong with your face?" Alas, I know that this is not being the light to the world so we just ignore it. However, I can only imagine what Ty feels like. I am praying for a complete cure one day, but until then we will just have to make due with the advances in technology. So come August I pray for my precious angel to have a newly lifted left eye to match his right one. We will for sure keep everyone posted. Until next time......

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

Time Marches On!

Once again, I am behind on my blogging efforts. School is officially in full swing, but somehow I am not. My heart longs for those lazy days of summer, but fall is quickly approaching. Time marches on whether I want it to or not.

So the new school year has begun. Tristan started 2nd grade with Mrs. Condry, and Ty started Kindergarten with Mrs. Sluss. The greatest thing for the kids this year is that even though 2nd grade is supposed to be upstairs and K-1st downstairs, Tristan's class didn't have enough classrooms to be upstairs. So her classroom is directly across the hallway from Ty's classroom. They love being able to see each other throughout the day. Ty's first day of Kindergarten was a rough day. He cried when we left him. It was so hard to do. Andy says it was because I was the only mom with a camera, and I embarrassed him. I told him, "Are you kidding me? What mother doesn't take pictures of their kids first day of Kindergarten?" He was fine after we left, and wound up loving it. He loves his teacher, and has been making friends fast. He has already had a timeout for talking. He must get that from Andy;)

Tristan did well as I expected her to. As for Evan, he once again thinks he is an only child! Here they are on their first day

Not only did school start, but on August 27-28 Andy, Ty, and I headed to New York for another laser treatment. This trip also had a few extras. Ty's laser doctor suggested we meet up with a plastic surgeon/dentist for advice on Ty's increasing lip size and his teeth. The information we received was great. It was kind of overwhelming, but most information regarding Ty's condition is. So I will try to break it down for you the best I can. Ty's Sturge-Weber Syndrome and his facial port wine stain have caused excess bone and tissue growth in his cheek and jaw. His jaw is growing longer vertically on the right side, and thus it is pushing his teeth out. His lip is also growing because of the excess tissue and blood flow from the birthmark. The suggestion from the doctor on how to treat this. We wait! Surprise! we haven't heard that one before. No, really he wants to wait a few years for Ty's permanent teeth to totally develop, and then we go from there. In the meantime, sometime in the future Ty will see a world renown orthodontist in NYC in order to possibly fit his jaw with a plate to restrict the overgrowth. Then we will talk about tackling the overgrowth of his lip by doing a lip reduction surgery. This is all in the future, but for sure what will happen at some point in time. It was good information to learn.

The most exciting information was that the dentist/plastic surgeon was very concerned with the droopiness of Ty's left eye. He wanted to know why we had not had it lifted. I just flat out told him that I had never really thought of it. I have been so concerned with the functional part of the eyes and getting the prosthesis to fit right that I never gave one thought to the look of the overall eye. So right then he gets on the phone and sets us up with a pediatric ophthalmic plastic surgeon. We met with him and immediately loved him. He is a big Yankees fan, and showed Ty all of his Yankee memorabilia. He told us that he could basically do an eyelid tuck and make Ty's eye look normal like the other one. He proceeded to tell us about how he would do the surgery. Then he told us that he wanted to make sure the muscle was working correctly. He said that he could put a dilating drop in Ty's artificial eye, and if the muscle was in working order then the drop would cause it to contract. This would in turn cause the eye lid to raise as if the surgery had already been performed. So it basically would give us a little "sneak peak" as to what Ty would look like after surgery. WOW! it worked. The doctor was excited that the muscle is still good. He really wants to do the surgery for Ty. We are on board too, and hopefully will schedule it for this summer. It is day surgery, but then he would have to see him the next day, and then a week later. So summer is essential for him to have it done. To have two eyes that look normal and open is something that Andy and I really want for him. Well that is a quick little update on our little buddy. I will post more in a couple of weeks as Ty heads back to the glaucoma doctor to have the pressure checked in his right eye. We are praying for a good outcome for that. Until next time.....

What to do with those Old Easter Buckets

Priceless!

We are back from Ty's latest appointment. This time we traveled to Nashville to meet with Ocularist, Sherry Richardson. She makes prosthetic eyes. Ty spent most of the summer without his eye in because the fit was just not that great, and it would cause him some discomfort and gooping of the eye. Ty's last prosthetic eye was in 2007. Needless to say, he has grown quite a bit in the past couple of years, and it was time for a whole new eye. I recorded the process the best I could with my camera. So I thought I would let you see how it works. First off, Sherry is so cool! Not only is she amazing at her job, but she has the patience of Job. Ty spent most of the time sitting on her lap while she formed, molded, and painted his "eye". It was so neat to watch. First off we have the before picture. You can see how the eye is closed completely, and very droopy. Also, Ty tried to show off the inside of his actual eye. This is what the real eye looks like. Notice how small the iris part is? You can hardly see it. It is actually the size of my pinky fingernail.

The next process was for Sherry to make the eye impression for the new prosthetic mold. If you have ever had an impression made in your mouth, it works very similar. She inserted a mold into Ty's eye with a tube on the outside. She then injected the impression liquid into the tube so that it would go into the mold in Ty's eye. This part was hard for him. It burned a bit, and it was cold. So we had some crying going on. I stopped taking pictures then. I just didn't feel right about it. It seemed kind of cold to take pictures of my baby in pain. Here are the ones that I got at the beginning of the process.

Once the impression was made it was time for the mold to be made out of wax. This was too cool. She used this mold to shape and form a custom fit eye for Ty. She used tools and an alcohol burner to smooth the wax so that there were no rough spots that could irritate Ty's real eye. This is her forming the wax with a little help from her assistant.

Ty was impressed that he had a yellow eye. He really wanted to make that his "new eye". The boy cracks me up. He was serious too. I can only imagine how the little wheels in his head were turning. He must have been thinking up some doozies to tell people why he had a yellow eye. He kept asking Sherry, "How come I can't just have that one". Too funny!

After the molding was finished it was time for the baking of the eye. The artificial eye is made from acryllic. Yes, the same stuff that artificial nails are made of. So the acryllic goes in the wax mode and in a couple of hours - TA DA!- a new eye is made. The next step is to paint the eye so that it looks exactly like Ty's other eye. This is cool. Ty sat on Sherry's lap so that she could really get a good look at him, and she painted it to match his other eye.

You can see all of the different colors she has. Ty was really set on having orange in his eye. That is his favorite color- GO VOLS! So she made a special orange dot at the top of the eye so that we would know which way to put the eye in. This satisfied him. The painting of the blood vessels was really neat. She took small red fibers that look like fuzz and distributed them across the eye. Then she smoothed it over with the acryllic. It smelled like a nail salon in there. After the painting was finished it was off to the oven to bake and then to polish the eye at the end. This process took about 1 hour. After that Sherry was able to put Ty's new scleral shell in. This is the finished product. His eye is usually swollen for a day from all of the poking and prodding. This was right after inserting the eye.

This is what he looks like now after wearing the eye for a couple of days.

Pretty impressive if I do say so myself. You wouldn't even know which was the artificial one.

We are so thankful to the Lord for Sherry's talents. She is able to make our sweet little boy have some confidence, and that is priceless. Well I hope you have enjoyed your lesson on scleral shells today. Until next time.....

Not me! Monday

I have not participated in this little bloggy fun in a long while now. It was all started by Mckmama at http://www.mycharmingkids.net/ Not Me! Monday is a great way to get it off of your chest! Check out the other Not me! Monday blogs and come on join in the fun.

Just a few things that myself or my family have NOT done over the past few weeks.

While we were camping Ty met a couple of boys his age to play with. He most certainly did NOT tell these boys when they asked what happened to his eye that a sting ray had poked him in the eye and pulled it right out. We had been to the aquarium that day and watched/touched the sting rays. Andy and I did NOT think this was rather funny and creative. Then we had a little talking to our funny and creative boy.

I do NOT let my boy's fingernails get longer than mine. It had NOT been quite some time since I last trimmed their nails.

I most certainly did NOT on a whim decide to buy school supplies early. For crying out loud it is July and we still have a bit to go. I am NOT ashamed to say that buying school supplies is NOT one of my most favorite things to do.

Andy will NOT be out of town all week long. He is NOT gonna be out of town for my birthday on Thursday. I am NOT sad about that at all!

A New Birthmark Buddy

Last week we had the privilege of meeting a new family here in our local area who we now consider a "birthmark buddy. That name actually started at www.birthmarks.com. It is an endearing term used to describe those with Port Wine Stains. Many times our little newsgroup uses it in signing off our emails. For example, ybb (your birthmark buddy), mobb (mother of birthmark buddy). It is really great. I am always excited when I see other children with Port Wine Stains, or especially when I get to talk to the parents of these children. There is something to be said about that common bond of knowing exactly how they are feeling about something so personal. It is hard to explain sometimes. I can only imagine how Ty must feel when he sees a child that has a birthmark like his. He was so precious with little Zoe. He mentioned that he loved how her birthmark came across her lips. It was just like the shape of her pacifier. Then he stroked her hair. Evan, on the other hand, didn't like it so much that his mama was holding a 2 month old baby. No sirree bob! Get that baby away from my mama! Hmmm! I may need to work on that mama's boy thing.
So our new friends have started a blog http://twozeesinapod.blogspot.com/ I ask that you check it out, and add little Zoe to your prayer list. She actually has a hemangioma. It is a little different than a Port Wine Stain, but in the same family. Her hemangioma is growing around her trachea as well as what you see on the outside. So needless to say, they are seeking medical treatment in Arkansas. This is one of the leading hospitals out there in the treatment of hemangiomas. They live less than 10 minutes away from us and I hope that we are able to get to know one another a little better.

A Strong God!

Well it is raining once again. What to do??? I am going to be thankful though because last summer it was so dry and burnt up that we were begging for rain. I will say though that the past couple of weeks I have kind of felt like I live in Florida with all of the mid-afternoon thunder storms. They certainly have not made for dull moments around here. Especially when I have two kids that really dislike the thunder and lightening. Ty said the cutest thing the other day during one of the many storms we have had. It was thundering and lightening a lot! All of the sudden a HUGE boom of thunder sounded. Ty and I both jumped, and he said, "Whew! Mommy, That sure was a strong God wasn't it?" I just smiled and said, "He sure is buddy!" That simple statement had me thinking about so many "things" that we deal with in this world that make us seem weak. I think Ty's statement sums it up in a nutshell- He is a strong God, so let's just let Him handle our "things". If we bring it to Him first, then we need not fear or worry! Just a little food for thought for the day. Until next time.....

Summer Storms

Storms in the Summer,

Oh! what a Bummer.

Wait, maybe not.

I was able to get this great shot.

We're kind of scared they said,

Can we snuggle up in your bed?

We aren't tired and don't need to take a nap.

We'll just lay here until the thunder doesn't clap.

Storms in the Summer

Really not such a bummer!

I get to enjoy these sweet, special times.

While praising God that these two are mine!

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.....