Fletcher's Fans

For those of you that don't know Fletcher has a Facebook page called Fletcher's Fans. It has over 7000 fans. I have closed it for now, not deleted, but closed it. I was posting a picture of him and a small update everyday until about a month ago. There are some really sick people in this world and they like to comment on pictures of Fletcher. Not just comment but make threats and say some of the most vile things about my sweet, innocent little boy. They are also taking the pictures of Fletcher off of his page and putting them out there in cyber space and asking people to caption Fletcher's picture.I feel completely violated and will not put myself through this. And yes, I realize there are many people that Fletcher is touching their lives. And they are touching our lives.  I know there are way more good people out there than bad but in this case the few bad apples, which really aren't a few there are hundreds of people hating on my son, and they have spoiled the whole bunch. One girl asked if Fletcher was the devil. One man said he wanted to rape Fletcher. I cringe every time I get a notification that someone has commented on one of Fletcher's pictures. I tried posting a picture of Fletcher just once a week. Those people are still out there and they are still making vile comments about Fletcher. Two nights ago I put a picture of Fletcher on his page and before I closed it that one picture had over 13,000 likes which is highly unusual and very suspicious. People were sharing his picture on their pages calling Fletcher names and asking what 'it' is. So for now the page is closed. I may make a private one but for now I just need peace of mind.

So thankful...

Seven years ago today we admitted Fletcher to The Children's Center (TCC). That day is a blur to me and also a day I'll never forget. We were handing him over to people who knew nothing about him and didn't love him like we did. When I think back on those days, Fletcher was really, really sick. So sick it was scary. It's a true miracle that he is alive and doing so well. I know the Lord was with us in the decision to place Fletcher at TCC. I also know that the Lord has used that place to save his life many times. I also know Fletcher would not be doing as well as he is today if it weren't for TCC. The nurses, RT's and all the therapists have made the difference in his life.

Six or eight months ago we were approached by our nurse practitioner about bringing Fletcher home to live with us for good. So, the process to bring Fletcher was started. We set a date for October 5, 2012. Well as you know that date has passed. Right before we were set to bring Fletcher home, our insurance decided that they would not pay for nursing care in our home for Fletcher. So, we had to file an appeal with the insurance company. Well, we found out today that  the we won the appeal and they will be paying for nursing!!! So, tomorrow we meet with social services to work  out the details of home health and all the equipment we'll need. We are over the top excited and can't wait to bring Fletcher home. We'd appreciate your prayers as we make this huge transition. It's going to be hard but it will be worth it. Please pray for the nurses who will be coming into our home to care for Fletcher that will be competent and will treat him with respect and dignity. I know as soon as we have a good routine going it will get easier. Thank you so much for your love and support!

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                                                                            2012

So, it's been awhile...

Wow! It's been awhile since the last time I posted on this blog! A lot has and is happening.

Kayleigh graduated from Bethany High School in May. She has chosen to wait until January to go to college. She has however, decided to take hold of her life and move into an apartment with her best friend, Emma. I don't think I've ever seen Kayleigh this excited about something in a really long time. She's growing up on us y'all! We're excited for her and confident that she can make this work. The independence will be great for confidence and hopefully help her decide what career path to take that's perfect for her.

Maddie completed 4th grade at Will Rogers Elementary. This year we transferred her to Bethany Elementary, where Fletcher goes to school. She loves her new school, though she is missing her old friends at Will Rogers. We think this is going to be a great change for her. And what a blessing to have both her and Fletcher in the same school! Fifth grade is a busy, busy time! Maddie and I are gearing up for Camp Classen. It's going to be great for the two of us to do this together.

Fletcher is doing amazingly well! He's in 1st grade at Bethany Elementary. Fletcher's still trying to get used to this big change from kindergarten. Kindergarten had a different pace, a lot happened in a short period of time. First grade involves a lot of seat work and reading. The sitting still part is really hard for Fletcher, so he's kind of being naughty in class and having a hard time focusing. But he'll get it figured out and hopefully this will be another great school year for him.

Fletcher's health is pretty good, actually better than it's ever been. In fact so good, that he's being discharged from TCC on October 5, 2012. That's in THREE WEEKS! He's still ventilator dependent and definitely still considered medically fragile. But, the Lord is opening doors and laying out the path for Fletcher's homecoming. We've been busy trying to get things ready around here! Fletcher's physical therapist and her crew have been to our home to measure doors and hallways in order to get Fletcher the right equipment for home. Monday we meet with Preferred Pediatric to discuss our home health plan. Soon we should meet with the home medical equipment company to set that up. So may details to work out. This process is definitely keeping us on our toes.
 
Fletcher will have his own room, for the first time in his life. I am more excited about this than you can imagine. It will be fun to finally get to put a room together that's just for him, filled with things that he loves. Fletcher loves music, and he especially loves guitars. So, it was fairly easy to come up with what I want to do in there. I have to finishing up a few other projects before I can get started on his room. And we need to get Kayleigh settled in her new place since her room will become Fletcher's room.

We're so excited to start this new chapter in our lives. We're excited to have a new normal. We will definitely miss the security we had at TCC, and all the friends we've made. We're so grateful for how well they've taken care of Fletcher and loved him and our whole family. It's hard to believe it's been nearly seven years that we've spent in that building day in and day out. It's going to be a good journey and I think we're ready!

Catching up...

Busy times here at Casa Burns. Last Sunday I took Kayleigh to Bricktown with her cousin, Meggy and our favorite photographer, Sherry Lynch. Sherry took Kayleigh's senior pictures. I can only imagine that she took about 300 or more pictures.  Kayleigh is so photogenic it's going to be hard to choose the ones we want! We'll be able to look at them sometime after Thanksgiving! Next week we're going to order Kayleigh's graduation announcements and her cap and gown! We just signed up Kayleigh to take the ACT again in December, we're trying for the highest scores she can get. This year is going to by so quickly. We're hoping to make it a special one!

                                                     A nice walk on a Sunday afternoon!

Maddie recently had her first orchestra concert and the 4th grade musical was last week. She's excelling at everything she doing! I'm so proud of her. Maddie also has such a kind heart. She's missing being able to see Fletcher whenever she wants. Last week she made him a couple of pictures she wanted me to deliver to him. Fletcher loved getting this art work from his sister! He, in turn made her some art work, which she loved! Their bond is truly special!

                                                     Maddie at her first orchestra concert...

                                               Maddie teaching daddy how to play the viola!

                                                                  Court Jester #6

                                                 Merlin,(Jackson) and Court Jester #6

Last Friday night we checked Fletcher out of TCC and took him and Maddie to the Fall Festival at our church. We had to wake him up to get him ready so he wasn't full of personality until the end of the night, of course! He loved playing ring toss with our friends Heather, Danny and Tommy!
 

Fletcher was Maddie, the flapper's date!

                                                     Heather talked him into the ring toss!

                                                      Ring toss with Tommy and Mr. Danny!

Fletcher has been a busy boy lately! He's been participating in swim therapy every Thursday and he's actually starting to enjoy it! Fletcher's also sprinting each day and some days he's sprinting as long as 12 hours at a time!! But those 12 hour days wear him out. His school situation isn't worked out to my liking but hoping to get it all figured out soon. Fletcher didn't go to kindergarten at all this week. He was on a round of antibiotics that really messed up his little tummy. On November 10th I'm taking Fletcher to have a renal ultrasound. I thought he had a UTI but all the lab work came back normal. But it seems as if he is experiencing some pain when he urinates so we need to find why. Craig and I wonder if since Fletcher is chronologically almost 7 years old but he has the body of a 2 year old, what's happening with his internal organs. Are they growing even though his little body isn't? And what does that mean? Lots of questions and praying for some answers. Other than all that Fletcher is doing great and is happy as can be!

                                                        Swimming with Miss Melanie!

                                                             Sprinting and being silly!

Craig and I are doing well. As the girls are getting older and spending the night with friends and hanging out with friends, we're having some good quality time together on the weekends. We have a new favorite restaurant, Big Truck Tacos, that we've been frequenting on Friday nights. Craig's working hard each day and I'm taking care of the kids and the house. Well that's all for now. Hopefully I'll blog again as the holidays get closer!

My new favorite picture! Craig and the girls before they leave to trick or treat!

Mexico! Mexico! Mexico!

Craig used to be a closet smoker. He only smoked while he was at work or in his car. He never smoked in our home or in front of us. He smoked before we met and quit before we got married. Craig started smoking again after Fletcher was born. It was kind of a release for him or coping mechanism, I guess. I really hated that he smoked and would randomly ask him to quit. I tried not to nag, but it really bothered me that he was smoking. Well, about two and a half years ago he quit! Unbeknownst to me, he was putting the money he spent each week on cigarettes into an envelope. In February, when we celebrated our tenth anniversary, Craig told me about the envelope and that he was saving the money for the two of us to go on a trip! A few weeks later, we went to a travel agent and booked a trip to Playa del Carmen, Mexico! As I write this, that trip has come and gone, but it was AMAZING! And just what Craig and I needed! We stayed at a five star all-inclusive resort called The Royal. It was beautiful! We were greeted by a Romance Concierge, who was able to set up a romantic dinner on the beach and help us with anything we needed. It was fabulous! Before our trip we decided we didn't want to be tourist, we wanted to relax and just be with each other. We then decided we would spend one day on some kind of excursion. We ended up going to Tulum and Xel-Ha, both places Craig went as a boy. So, that was a fun day filled with an adventure to the Mayan ruins in Tulum, then snorkeling and dolphin watching and such at Xel-Ha. It was so fun! We started each morning with a breakfast buffet, then we'd spend the morning either at the pool or on the beach. Then we'd go have some lunch then take a nap or read or just do whatever we wanted! After relaxing each afternoon we would pick one of the nicer restaurants for dinner! We also celebrated Craig's 45th birthday while we were there. How fun is that?? All in all it was a fantastic trip and I'm so grateful to have such a thoughtful, loving husband! I appreciate him more than he'll ever know!

 The view from our balcony...

 In front of the resort...

 Anniversary dinner on the beach...

Yummy anniversary cake...

 Craig at Xel-Ha...

The Mayan ruins in Tulum...

Craig's birthday dinner at a lovely Asian restaurant...

Good Intentions...

I always have good intentions for keeping up this blog, but alas those intentions come and go! So forgive me for my inconsistency.

Since July, I have a senior, a fourth grader and a kindergartener! So let's start with my senior...Craig and I made the decision to transfer Kayleigh from PC North to Bethany High School. These high school years have been very tough on her and Craig and I, for that matter. North has about 1900 students Bethany has 450- 500 students. We're hoping a smaller school with different kids will help motivate Kayleigh, you know peer pressure, but GOOD peer pressure! She seems to be enjoying it and she's making new friends. Kayleigh will take the ACT for the first time this Saturday. She has every opportunity to go to college, if she'll take it seriously. She has a couple of places she wants to go to college but that's all pending on her ACT scores. I took Kayleigh to have her senior picture made for the yearbook last week, but at the end of October we'll go downtown and take her senior pictures with our family photographer, Sherry Lynch! We're very excited about that! She is so photogenic I can only imagine how hard it is going to be to choose the ones we like best! We're also getting ready to order her cap and gown and graduation announcements! WOW! This senior year is going by fast and it's going to be expensive! But she's worth it!

First day of 12th grade...

Maddie is doing really well academically in 4th grade. She's loving her gifted and talented class, she also really likes her homeroom teacher, Mrs. Harris. Since Maddie is in the 4th grade she has the opportunity to be in the orchestra. She is playing the viola and has her first concert tomorrow night. She LOVES it and she seems to be catching on easily. This has also brought out her desire to learn to play the piano so she's teaching herself to play! Also, 4th graders can join the Art Club, it meets once a month and she really likes it. But I have sad news. Maddie decided not to take dance this year. After 5 years she wanted to call it quits. She really wasn't enjoying it and it was a chore making her go every week. I'm sad to say she hasn't missed it one bit! I miss it and I miss having a dancer, but it's not about me and she obviously made the right choice since she hasn't mentioned it one time!

First day of 4th grade...

Fletcher is doing well in kindergarten and we're trying to go 5 days a week. We're going in the afternoons for a couple of hours. It seems we're not accomplishing anything academic, though. They've put Fletcher in an all day Kindergarten class and since we go at the end of the day he's there in time for 1 center, snack time (he doesn't eat by mouth), recess, (seriously?) and specials which include, library, PE (again, seriously?) and music (he LOVES this class). Fletcher has one of the best kindergarten teachers in the building, too bad we don't get to take advantage of her amazing talent. We'll have a meeting with the special education department soon and hopefully we can rectify this situation. Don't get me wrong, I love his school and I love that he gets to be apart of such an amazing school! The social aspect is fantastic and I love all his little friends. I just don't know that we need to go 5 days a week for friend time!

First day of kindergarten...

On a more serious note, on September 20, 2011 my older sister, Sharla passed away. She fought a long battle with drugs and alcohol. It's all very sad and she will be greatly missed. Her two daughters, Samantha and Chevaun took a hot air balloon ride and spread Sharla's ashes. This was one of her final requests. It was very sweet.



Rest in peace, Sharla Ann...

Standstill...

Well, July was busy and I'm looking forward to a little bit of a lull before school starts! Last week Fletcher finished summer school, he was weepy each day and didn't get a whole lot of work done. But eventually we managed to get a little work out of him. I'm so proud of him. Fletcher did an amazing job sorting and putting together his alphabet book!

Tough day at summer school...

Fletcher and Mrs. Darcey during PT...

Fletcher and me on the swing...

Sometimes PT is hard work...

So silly...

Summer school and sidewalk chalk...

The alphabet book!

So a little update on the vent weaning. We're basically at a standstill, Fletcher is still sprinting three hours at a time twice a day. During Fletcher's last surgery they also did a scope of his airway and he has a lot of scar tissue. So, we're waiting for a surgery date where his ENT will resect the scar tissue. Hopefully it will help us move forward in the weaning and also help him be able to make noise. When Fletcher is off the ventilator he literally can not make any noise, which could cause a lot of frustration on his part, not being able to communicate with us and the people who care for him. But, he has figured out that he can kiss and that makes noise and gets your attention if he needs it. He's so stinking smart! :)