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

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.....

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.

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.....

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....

Totally Toothless

I took Ty to the dentist a couple of weeks ago to lose his three front teeth! A little background info for everyone who is confused at this point. When Ty was just a little over three years old he fell on the tile in our kitchen- teeth first. OUCH! He knocked his two front teeth way loose. They were in fact just dangling. So off to the ER we went. They then referred us to Dr. Mike Mysinger, Ty's pediatric dentist. He proceeded to pull his two front teeth. The front side tooth was a little loose, but he said it should be okay. So we went on our merry way. Then the next weekend at church, Ty fell off of his chair and landed no other than front side tooth first onto the chair. So the side front tooth proceeded to dangle. Back to Dr. Mysinger we went. Okay at this point I am sure DHS is going to come, but luckily we made it without questioning;)


Dr. Mysinger then told us that since he was so young we had an option of getting a false bridge for Ty. I figured since his permanent teeth wouldn't come in for a few more years at least we should do it. So my three year old was fitted with three front false teeth. They looked beautiful I might add.

Now back to the original story. Of course since Ty doesn't do anything normal and by the book, he lost his bottom front teeth early. The bottom front teeth came in really fast and early. Apparently, it takes around a year for the bottom front teeth to come in after you lose the baby ones. The dentists have never met Ty though. So Dr. Mike said that once he lost his bottom two teeth, in 6 months we would take the bridge out. Well what do I notice, but Ty's top permanent teeth starting to come in with the bridge still in. 6 months was not going to happen. So I made the call and off we went for the removal of the bridge. He cracked me up just laying there. Dr. Mike popped it out and drilled off some of the cement, and then it was off to the treasure box. He made it look so easy. Although I told the dental assistant that she just had no idea what he has been through in his short 5 years. A little scraping of tooth cement is nothing. So all of that LONG story to present to you...........

TOTALLY TOOTHLESS TYLER

Ith'nt he stho sthweet! We sthure sthink stho!!

New York Trip

Okay I am kind of sad. My baby and my hubby had to eat their Thanksgiving meal at Planet Hollywood. That makes me sad. Andy and Ty were able to check out part of the Macy's Day Parade though. They had walked around four blocks to get there and it was barricaded. So Andy asked Ty if he just wanted to go back to the room. Evidently a police officer was listening to the conversation and he told Andy that they could come on through. How awesome is that? They said it was really neat. Ty got to see the Buzz Lightyear balloon. I was hoping that he would. Buzz is one of his favorites. They have to be at the hospital bright and early in the morning at 6:00am. Ty is the first surgery at 7:00am. Pray for everything to go well. I miss my boys!!
Until next time...

Fantasy of Trees

We headed out today for our annual visit to the Fantasy of Trees. This is our third year to go, and I just absolutely love it. The kids have a blast, and all of the money spent goes to an awesome cause- East Tennessee Children's Hospital. So if you live in this area and have never been then I must recommend that you check it out. You will not be sorry.

I had a rough morning getting there. When I got downtown to the Convention Center the Holiday Inn Parking garage was full. I have never been when this garage is full, so I just wasn't sure where to park. It has been many years since I have been on campus driving around. (almost 10 to be exact). I was a little nervous, but eventually I found an obscure lot down behind the Foundry. I didn't have to pay, but that kind of made me nervous. I had visions of coming back to a towed car! I guess the catch was you had to walk 14 hundred miles to get to the Fantasy of Trees so who cares if you park there. The kids did great. Even Ty with his healing leg. It is pretty much back to normal now, and he only has an ever so slight limp. We just walked kind of slow for him. We made it finally. Then when we got in the door, I realized that my camera battery was almost dead. All my scrapbooking friend can relate. I thought I would die. I mean we had the matching outfits on. No camera- AHHHH! I did manage to salvage it for a few great pictures though. After these couple of mishaps the day turned out perfect.

This year my niece, Rachael, was singing. So we watched her junior praise team sing a few songs, which were so good, and then headed off to the booths. My sister-in-law, Susan and her mom Betty, along with Rachael walked around with us. My mom and my Gran E also met us there. I was grateful for the extra hands for sure since this was Evan's first year at the Fantasy of Trees. He did great as usual. Man, I had forgotten what it was like to have that darn stroller again. It is good for carrying things though.

So we hit some of our favorite booths. The cookie making booth, the nail painting booth, the mini tree booth, the craft bag booth. We also rode the carousel and the little tea cup things.

I know what you are thinking and yes, Ty does get his nails painted. He loves to do whatever Tristan and Rachael do. I just let him do it. I figure it will only last a while, and the year that he decides he doesn't want to do it anymore I will be sad. That means he will be growing up. So until then I will cherish these memories- Gold fingernails and all!
The carousel was fun this year. Mom rode with me and the kiddos. Evan had his first ride. He enjoyed it for sure. Tristan was so excited to ride on the horse sponsored by Dr. Abby and Dr. Greg. She raced to it and about took everyone out trying to get on "Dr. Abby's horse".

So after a quick look around at the trees, and I do mean quick, we headed home. The trees are beautiful, and I would so love to have an adult day sometime at the Fantasy. It would be great to look at them. With my kiddos it just doesn't happen. I don't really mind though because one day I will be able to look at those trees, and the cookie making, nail painting and tree decorating will be of the past. That will make me sad for sure. They grow so fast. I hope you enjoy our slide show of pictures.

On another note, please pray for Ty and Andy. They will fly out to NYC tomorrow morning at 5:45am for Ty's 16th laser treatment the Friday after Thanksgiving. I am sad as this will be our first year of not being together as a family on Thanksgiving. Andy and I know though that this is one laser treatment closer to maintenance. We are hoping for only two more until we reach maintenance- per Dr. G. I will keep you posted on his progress. Until next time.... Have a wonderful Thanksgiving. God is so good and He bestows many blessings upon us. We have so much to praise Him for.

Clean Slate

Ty went to the ortho doc this morning, but not before we had breakfast at Cracker Barrell where he polished off cheese eggs, sausage, biscuits and gravy, and apples. Yep, his appetite is coming back. So the doc declared a pretty clean slate for Ty. He is not restricted to any activities, but we are not to push him too hard. He says he feel that he will continue to have his limp for around two months. Each day should get better as his leg becomes stronger. He will need to come back on Dec. 11 and have an x-ray to make sure there is no bone damage. He doesn't feel that Ty has any though. He is cleared to go back to school on Monday- YAY!(for him and me) Home health will come tomorrow and pull the PICC line out. I think Andy and I may be more excited about the PICC coming out. That means we can sleep a full night. W e have had to do Ty's medicine every six hours, and then it takes one hour to go into the PICC. We have to remove it after this hour. We have been running on around 5 hours sleep a night. For me that is not much. If there is one thing I crave, it is sleep. I need at least 8 hours or I am not a pleasant person. I think Ty will just be glad to have a nice hot fun-filled bath. He has only been able to stand up in the bath while we sponge bathe him. It is cold, and I am sure not too fun. I am so glad that Ty is feeling better, and pretty much back to normal. Thanks to everyone for your prayers, thoughts, gifts, cards, etc. We love you all. Until next time....

A Friend Loves at All Times.....

"A friend loves at all times, and a brother is born for adversity" Proverbs 17:17

This verse sums up the day. I took Ty to have lunch with his friends at school yesterday. As you can see, they are missing him pretty bad. The feeling is definitely mutual. I am moved beyond belief at how concerned they are about him. They hugged, patted, and loved on him when we walked in and when we left. I only regret to say that I probably caused Mrs. Stephanie's Friday afternoon to be quite a long one. We had them pretty stirred up when we left. To see the smile on Ty's face was just priceless. He loves his buddies. When I see this picture I think about the prayers that I prayed before our decision to start Ty at Grace's Pre-K program. One of my concerns was would the kids accept him? I know it sounds a little vain, but never the less, I had it. You see he had been in Parent's Day Out at our church since he was 15 months old. This was his church, his sunday school friends, his territory. At our church he feels safe. Everyone knows he has a special birthmark and eye. Here he is just Ty. Would it be the same if we moved? What would the kids say about his eye, his birthmark? Oh no, here I have to explain it all over again. Then I realized that I can't control these things no more than I can control how tall Ty will be. I had to let go and let GOD! So with faith and trust, I did just that. I have continued to be blessed by the kids loving Ty. It is refreshing to see how little children just willingly except. No questions asked. I won't lie, I still wish I didn't have to witness him being made fun of, or stared at in his future encounters. It is hard, but I know that God will be there for him. He will never leave or forsake him. That is a comforting promise that I can release Ty into! Until next time....

Tagged

So my blogging friend Jenny tagged me for a little fun. I am to do these requests

1. Pick the 4th picture folder on my computer

2. Pick the 4th picture inside the folder

3. Explain the picture

4. Tag 4 other friends.

Here is my sweet Ty-Ty trying on his new "vampire teeth". We had a blast trying them on. Even mommy joined in on the fun. He continues to improve each day. He has lost about 5 pounds so I am just trying to get him to eat, eat, eat. He didn't have 5lbs to lose. He is still using the walker, but he has been crawling up the stairs, and sliding back down on his bottom. Each day that leg gets a little stronger. Apparently, I am not the best homeschooler. As he was doing his work yesterday, he told me he really, really couldn't wait to go back to school and see Mrs. Stephanie and the friends. (that is what they call each other in class- "the friends") He is bored here with mommy and Evan. So today we went to visit the kids. They all were so sweet and concerned about him. They truly miss him. We are going tomorrow to eat lunch with his friends. I will take my camera for some photo ops.

I had fun with this tagging game, and now I choose to tag my only two blogging friends left since Jenny is out. I choose Amy C. and Megan. I have to recruit more bloggers. It is so much fun. It is just like journaling and scrapbooking on the computer. Until next time...