Sunday, June 29, 2008

Just for fun...

I love that you all are enjoying the videos! I knew if you saw Fletcher in action it would be a blessing! Fletcher is an amazing little guy and it is totally due to the Lord, make no mistake in thinking Craig and I or TCC are responsible for the miracle of Fletcher's life. Only the Lord could do such a work! And I believe it's because so many of you have prayed for Fletcher. Thank you for loving him and petitioning the Lord on his behalf. I believe the Lord is glorified in Fletcher's life. Do you all realize that just six months ago we were told he wasn't going to make it. We were told to enjoy him, to keep him comfortable. When you see these videos it's more than obvious that he's getting stronger and smarter with each new day. We are so grateful for what we've been given in Fletcher. Though our life isn't ANYTHING like we thought it would be when we decided to have another baby, it is full of love and wonder and amazement and grace. Hopefully the Burns family is a more loving, tolerant, kind and giving family because of our circumstances.

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This video was taken over a year ago. At one point they were letting Fletcher use this chair to explore his environment. He LOVED being mobile and in charge! The in charge part was probably what motivated him most! He used a joy stick to maneuver this chair. It was really amazing how quickly he caught on! Anyway, for reasons I don't quite understand, they quit using this chair. Just look at his face!

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Friday, June 27, 2008

Pictures...

Last Sunday we brought Fletcher home for the afternoon. One of our friends is an incredible photographer and she came to take pictures of us. She did an amazing job of capturing a day at home with Fletcher! If you'd like to see them go to her website and click on clients then click on Fletcher password is Burns. Enjoy!

Thursday, June 26, 2008

Busy week...

Well, things are moving right along over here at Casa Burns! We have spent this week getting my sweet Kayleigh ready for travel! Sunday morning she will leave for Mississippi with her grandparents then on July 3rd she is going to New York City with her friend Marley and her family. How exciting! Since she's flying to NYC we had to get her a photo ID, unfortunately her school ID doesn't have a picture. We had to go to the driver's license testing center and that was quite an adventure. After that we had to go to a tag agency to get the actual ID. Kayleigh has been wanting the underneath part of her hair colored so we did that and she also wanted to get some fingernails. On top of all that Kayleigh was finishing up her softball season! Whew!


High maintenance!



Maddie started piano lessons today. She's been playing around on the piano a lot lately so I thought we'd see if it might be her thing. She's talking about writing songs and having a band with her cousin EmiLee. Maddie has the perfect name for their band, "The Naked Cousins Band" hmmm...my kid is watching too much TV!

Piano girl



Fletcher has had a great week. Just the usual for him school and our walks each day. There is a young man working at TCC for the summer. His name is Seth and he is Fletcher's new favorite teacher! Seth is energetic and fun. He makes a point to come see Fletcher in his unit each day whether he's working with him or not. I think they like each other a lot! Fletcher loves that duck puppet in the picture below. I'm adding a video I took yesterday of them singing a duck song where they use this puppet. Fletcher has started moving his fingers together to make the 'quack, quack' part of a song they sing. If you watch closely toward the end you can see him quack, quack his fingers. It is now my most favorite thing he does!



Fletcher & Mr. Seth

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Friday, June 20, 2008

Bye, bye Hollywood...

When I was pregnant with Fletcher and going through my nesting stage I decided I wanted to remodel the master bathroom. It had green carpet (who puts carpet in a bathroom?) and I wanted tile and a new bath tub, too. And the walls were covered in dark green wallpaper with white flowers. It had to go! I decided I wanted to do Venetian plaster in the bathroom like I had done in my kitchen and paint all the wood work white. Above the mirror were what I call 'Hollywood Lights'. You know the ones that you see in movies and they're around the mirror in the stars dressing room? Anyhoo, I thought that can lights would be perfect. I figured Craig and his dad could put them in some Saturday afternoon. I scraped all the popcorn stuff off of the ceiling. WOW! That was a messy job! And we had a guy come and tile the shower and put in a new tub. It was great. In the meantime I had Fletcher and we all know what went on with him so the bathroom remodel fell way down on the list of things to do. When Fletcher was in the PICU the first time (around May 2005) my sweet SIL had one of her friends tile the bathroom floor. That was fabulous! Since then I have been waiting on Craig to put in the can lights, literally waiting. It didn't make sense to me to texture and all that stuff when it would likely be destroyed in the process of putting up the lights. Flash forward to March 2008. My little brother is a journeyman and when we had everyone over at Easter I drug him back to my bathroom and asked if he'd help me with the lights. He said he'd be happy to and it wouldn't be hard at all. Four years people, four years for a bathroom remodel! And it still ain't finished! Today my little brother, my newest hero, came over, on his day off and put the can lights in and changed all the outlets and switches to white. Aww...progress. Progress had been made. Now I need to texture and paint and have Craig put up new base boards. Oh no, did I say Craig? My sweet procrastinating husband? Here are a few pictures. When I finish my 'little' project I'll post more pictures. But, please don't hold your breath, it could be another four years!

Before...YIKES! (2004)

Today...sweet baby brother, Brett

Kind of after...(2008)

Thursday, June 19, 2008

Cool Surfer Dude...

Our friend from church Zach is eight years old and he often asks me questions about Fletcher. Zach wanted to come see Fletcher last winter. I had to tell him he'd have to wait until spring to visit because of RSV precautions. Well, on Tuesday afternoon Zach and his mom, Monica made a special visit. Unfortunately, Fletcher was a complete toot because we had just gotten back from therapy and he was tired! I so wanted Zach to be able to see Fletcher in his element and maybe play ball with him. Fletcher did finally warm up some but not to his full potential! Zach and his mom brought Fletcher a cool build a bear! It's so cute and cuddly! Thanks, Zach! He asked a few questions. He wanted to know how long Fletcher had been sick and how old he was. Zach's parents have done such a great job in raising a thoughtful boy! I'm so thankful Zach isn't afraid of Fletcher and wanted to know more about him. His mom was very supportive and let him talk for himself. That meant a lot to me. At Christmastime Zach and his family brought Fletcher his first build a bear which was a puppy in a Santa suit! At church I thanked Zach for the bear and he said, "Well, when I heard Fletcher was going to be in a hospital at Christmas I thought he needed some toys." So sweet! Thanks again Zach you're a great kid!



Cool surfer dude

Santa puppy

Monday, June 16, 2008

Happy Father's Day...

Happy Father's Day Craig! Thanks so much for being such a wonderful husband, daddy and friend! You're the B-E-S-T!

Yesterday we brought Fletcher home for the afternoon so we could celebrate Father's Day under one roof! We had a terrific day! Craig's parents and his sister and nieces came over for dinner. Craig's mom, Trudie made a fabulous lasagna and I made a chocolate trifle for dessert! Yum-o! Fletcher was very playful and we all loved playing with him. He loves his ring stacker and he also loves to play ball. His Aunt Kristi made up a new game to play with him. You'll have to watch the video to get the full effect of the game! Too, too funny! We didn't see a whole lot of the girls. Kayleigh and her cousin Devon stayed in her room and chatted. And Maddie and cousin EmiLee stayed in her room and played and played! None of them coming out until it was time to eat!


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Aunt Kristi and Fletcher


Every holiday I try to get a picture of all of the kids together or all five of us together. Well, for Father's Day and I wanted a picture of Craig with all three of the kids. Rarely do we get one with Fletcher being nice and yesterday was no exception! If you look at my Mother's Day picture same thing, Fletcher not being nice! :) He's such a toot sometimes! I guess I take way too many pictures in his opinion because every time I get my camera out he just starts shaking his head 'no'!

Father's Day 2008

The girls ended up spending the night with their cousins and Craig and I enjoyed some alone time together. It was nice to be home with my sweet husband. We rented the movie August Rush. What an awesome movie! If you haven't seen it I highly recommend it!

Thursday, June 12, 2008

Our new friend...

This afternoon Maddie and I took dinner to our dear friends the Russell's. They have a new baby girl, Blake. It was not the first time we've seen Blake just the first time we've seen her and I had a camera with me! Blake is two weeks old and absolutely precious! Maddie is turning out to be quite the baby hog! She loves babies and Blake was no exception! So we say welcome sweet new friend!

Maddie & baby Blake

Sweet, sweet girl!

Wednesday, June 11, 2008

Cool new toy...

Get a load of this cool new switch activated toy Fletcher got to use in class today. I love watching his face as he figures out that he's the one whose making it move.

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Recently Craig and I had a meeting with the pediatrican at TCC. Fletcher has lost 36% of his bone mass since he's been at TCC and 27% of that since last October! Dr. Brannon wants to try an infusion therapy with a drug called Pamidronate. They would do the infusion over a three day period barring that Fletcher handled it well. Pamidronate is basically Phosomax. I'm sure you've seen the commercials they use it for women with osteoporosis. They are likening Fletcher's bones to that of a 95 year old woman. The Pamidronate would promote bone strength. They'll monitor him very closely because there is a chance that it could mess up his electrolytes. We definitely don't won't his electrolytes out of whack again! Fletcher had an appointment with his endocrinologist yesterday, Dr. Domek thinks we should go for it. Basically he asked what we had to lose? Craig and I haven't made a final decision just yet. We need to pray about it and would appreciate your prayers also. Well, it's late and I need to go for now. More later...

Tuesday, June 10, 2008

She's back...

Well, Kayleigh's home from camp! She had a great time, met lots of new kids and saw some kids she goes to school with. Once Kayleigh got in the car the camp stories just rolled out of her mouth! She was very tired and very hungry! I guess camp food wasn't to appetizing for my picky eater! I was glad that I had planned her favorite meal for dinner. My Kayleigh loves herself some twice baked potatoes! She's still tired today and she has a softball game tonight! Hopefully she'll be able to sleep in tomorrow!

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Thursday, June 5, 2008

Camp and Summer Fun Day...

This morning Kayleigh left for camp. I just got the call that they arrived safely. Thank you Lord! She was a little anxious because she wasn't going to know anyone in her cabin. She text me on her way to camp and it turns out that she will be with one of her friends! I could tell she was excited about it! I wasn't worried about it because last year somehow she ended up making friends with EVERYONE!


Kayleigh & Christian headed to camp!

Today was Summer Fun Day at TCC. They set up baby swimming pools, sprinklers, misters and had some water guns to add to the fun. Maddie and Fletcher 'swam' together for the very first time! Maddie loved it, Fletcher not a fan of the swimming pool. I think mostly because he love, love, loves to take walks and we had to take him out of his wheelchair to put him in the pool with one of his teachers, Miss Jennifer. After Fletcher got out of the pool I took him back to his unit to change his clothes. Miss Jennifer and Miss Kelly played with Maddie while I was gone with Fletcher. I'm so grateful for the wonderful staff at TCC. They so didn't have to play with Maddie but they did and she had a blast! Thank you girls for loving my children the way you do!

Fletcher & Maddie

Fletcher, Miss Jennifer & Maddie


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Wednesday, June 4, 2008

Brotherly and sisterly love...

Okay, so I hope you all not too tired of video because believe me, I've got plenty! Here is a video I found of Maddie and Fletcher. One of Maddie's favorite things to do when she's visiting Fletcher is to get in his bed and play with him. She also loves to read and sing to him. Well, Fletcher has learned to head butt and he's totally spurred on by laughter. For some reason there's no sound, but there really isn't any need for it! I love how they interact with one another, true brother and sister! This video also shows you just how ornery he is!

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I also want to thank you for all the comments! I think I might be addicted to reading your comments. I get so excited when I get an email notifying me that someone has left a comment. I know I'm a dork. But I'm an appreciative dork!

Monday, June 2, 2008

Ball game...

Saturday morning Maddie and I went TCC to see Fletcher. We decided to take him for a walk. As we roamed the halls we ran into Mark Harmon and several of the 'celebrity' ball players. I will tell you I was very impressed with the way each and every one of those men smiled and greeted my Fletcher when they were introduced to him! As you all know, we have issues when we go out in public with Fletcher. People gawk and ask questions and these men were unfazed by Fletcher's appearance. That did my heart good and made me realize that these guys have a passion for TCC and the children who live there. Mark Harmon smiled at Fletcher and shook his little hand. It was sweet. Later that afternoon we went to the Mark Harmon ball game. They raised over $300,000! Thank you to everyone who came out and supported the TCC kids! Kayleigh and her friend Paige walked around the stadium and we didn't see them until it was time to leave! Maddie and I waited in line (man it was hot) so she could get Mark Harmon to sign the back of her shirt. He signed it last year and she wasn't leaving until he signed it this year. As we waited in the hot sun, I was wishing I had asked him to sign it on one of the occasions we ran into him that morning! Anyhoo, when he saw Maddie he said, 'Did you finish walking around the building?' I also had him sign a little baseball of Fletcher's. He was very gracious. I have to tell you a Maddie funny. As we were getting ready that morning she came into my bathroom and said she needed to floss her teeth. Well, let's be honest, she's not a big flosser if you know what I mean. So I said, 'Floss your teeth? Since when do you floss your teeth?' She said, 'Mommy, I want my teeth to look pretty for Mark Harmon!' She doesn't really get who he is. Until recently she's called him Mark Carmen! That girl is a hoot!


Mark Harmon and Maddie
Paige and Kayleigh

Me, Kayleigh, Maddie & Craig


I found another video I want you all to see. Fletcher is starting to use his feet to get things. For instance he has this Thomas the Train pillow one of my friends made him. If he feels it at the end of his feet he can manage to get it to his tummy! He loves to play with the fringe on the edge of the pillow. Watch his face and see how proud he is of himself...


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