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.