NeeNee's Blog

Catching up...

2011-11-06T00:09:00.000-05:00

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!

2011-10-19T23:26:00.001-05:00

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...

2011-10-17T21:23:00.004-05:00

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...

2011-07-26T23:53:00.011-05:00

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! :)

Baby steps...

2011-07-09T22:47:00.003-05:00

Fletcher has been tolerating being off the ventilator for 3 hours at a time, twice a day. About a week and a half ago we tried being off for 4 hours but he kind of hit a wall and we had to back him down to 3 hours. They usually sprint him first thing in the morning and then around 7 in the evenings. Fletcher and I have been enjoying morning walks without the ventilator and using his new manual wheelchair. He's not really a fan of the manual wheelchair but I love that thing because it's so cute and little, just like him!

Fletcher's really proud that he's been sprinting. How do I know? Well, when we take our walks everytime we see someone, anyone in the hallway he touches his vent tubing and points at the person we're talking to. He wants me to tell the person that he's sprinting these days. We tell EVERYONE, sometimes we tell the same person several times on one walk! He should be proud of himself, breathing is hard work and something most of us take for granted.

Well, it's a short update, but I'm doing better, right? :)

Summer school and stuff...

2011-07-07T17:17:00.022-05:00

Well, we just finished our first week of summer school. When I say we, I mean Fletcher is a student at summer school and Maddie is volunteering with the 1st and 2nd graders. And I have managed to get myself on the payroll at Bethany Elementary, as a teacher's assistant! It's only for four weeks so I think I can handle it. The teacher Maddie is helping absolutely loves her and thinks Maddie is the best helper! Maddie thinks she's 'teaching' the 1st and 2nd graders! She's very excited to go each day. That's such a blessing.

First day of summer school...

We went outside to write on the sidewalk with chalk...

Maddie and Fletcher on the shuttle headed back to TCC...

Maddie has surprised me quite a lot this summer with her independence. She has always been a mama's girl, so I've been blown away by the fact that she has walked into two different elementary schools, not knowing a soul in either school, once for Summer Spectacular and now summer school. Last weekend we went to my sister's lake house and Maddie rode on the back of a jet ski AND she went tubing on the back of a boat for the first time. I was a nervous wreck the whole time, her not so much! I'm so thankful for this new independence and sad all at the same time. She' growing up on me, y'all!

My independent girl...

Like I said earlier we went to my sister's lake house at Texhoma last Sunday and had a wonderful time. We just went for the day, but there we lots of Milgrims camping out at her house and we had so much fun! We spent the day at a little beach and the grown ups pulled the kiddos on the tube and gave them rides on the jet ski!

Cousins swimming at the beach...

Getting ready to go tubing...

There they go!

We brought Fletcher home for the 4th of July and had a great day with family and friends. The 4th is one of my favorite times not only because we are celebrating the birth of our great nation but also because it's the only holiday Fletcher has been home for every year. I love that we can come together and enjoy each other. Our friends the Jarvis' and the Drechsler family came over throughout the day. The kids played Just Dance and we had sword fights and lots of food! We ended the day at TCC, where we were able to take Fletcher out in the parking lot to watch fireworks. It was a fantastic day!

Our 'famous' Old Navy t-shirt picture...

again...

Fletcher and Aunt Kristi...

Me and my sweet friend, Emmy...

Megan and Kayleigh playing Just Dance...

Getting ready...

2011-06-29T23:54:00.007-05:00

Today I took Kayleigh to OSUOKC, it's a small community college here in Oklahoma City and I have a dear friend who is the Director of Student Services. Kayleigh will be a high school senior this fall, but I felt like we needed to get some advice so we'd know what to be working toward. My girl is growing up. Today was bitter sweet. My friend talked mostly to Kayleigh and I tried not to interrupt and give my thoughts and opinions. It's part of the very hard process of letting her go and giving her control of her future. SCARY! Part of me wishes I could just make all her decisions and set up her life and just place her gently on the path to adulthood. The other part of me knows that's completely unrealistic and I'm going to have to let Kayleigh choose these things for herself, even if they don't look like what I think they should look like. I'm believing Jeremiah 29:11 for her...For the Lord knows the plans he has for her...

Slow and steady...

2011-06-25T21:43:00.011-05:00

Well, I think Fletcher's going to do just fine in his new unit. He's probably not getting much rest during the day watching all the big boys but he'll sleep better at night, right? Yesterday they upped Fletcher's time off the ventilator to three hours at a time twice a day. He did great and tolerated it really well. Normally when they wean the ventilator they start slow and when they hit two hours they start doubling the time, meaning they go two hours and if they tolerate it the next wean is four hours, then eight hours, then twelve then twenty four hours! I'm so grateful for the slow wean and that they're really thinking about Fletcher and what he can handle.

Craig downloaded 1500+ pictures and videos off my iPhone onto my laptop, which will make it so much easier for me to blog! A TCC staff photographer gave me a thumb drive with pictures of Fletcher from the past two years, as well. So, I'll start sharing some of them here on my blog.

Here's a picture of me and the kiddos from last July...

This is Fletcher's sprinting shirt...

Philippians 4:13

"I can do ALL (breathing on his own) things through Christ who gives me STRENGTH"

Hanging with the big boys...

2011-06-22T14:49:00.005-05:00

Today Fletcher moved into a new unit. There are five teenage boys in there! This is going to be interesting. The unit he just left had children his SIZE not his AGE, so he was the big boy in that unit. It's going to interesting to see how Fletcher responds to these big kids. Several of the boys use power chairs and roll around the place independently, I'm hoping it make Fletcher interested in his new manual wheel chair. Peer pressure can be a good thing sometimes. Fletcher has progressed a lot since he started kindergarten and I'm sure it's because of the kids and their 'typical' behavior. One thing I think most people aren't aware of is that Fletcher is only delayed because of his circumstances not because there's 'something' wrong with him. He's a pretty smart kid and he knows how to get what he wants. For someone with a limited vocal vocabulary he's an extremely good communicator.

Okay so I just blogged two days in a row. I'll try to keep it up and keep you posted on what's going on around here. :)

I know his face is dirty, but this is quickly becoming my new favorite picture!

The Long Journey Home...

2011-06-21T15:37:00.005-05:00

I can hardly believe I haven't blogged since Thanksgiving! Boy, do I have a lot of ground to cover to catch you all up!

I really don't even know where to start! Well, we've been really busy. Kayleigh is officially a SENIOR!!! Next week she and I will make a trip to OSU OKC to get an idea of what we need to be doing to get her ready for college. Kayleigh's still not sure what she wants to do career wise so it's time for us to get busy! Kayleigh is also looking forward to spending a few weeks in Mississippi with her maternal grandparents. Maddie finished up third grade and had a great year academically. She is enjoying summer! This year Maddie is attending a little day camp called Summer Spectacular. It is three weeks long and each week she took a different class of her choice. The first week was Math Mania, which she loved! The second week she chose a reading class and thoroughly enjoyed it. This is the last week and she's taking a French class and I'm pretty sure it's her favorite of all three classes! Next month she is going to summer school with Fletcher to volunteer with the special needs kids. Then hopefully a break before school starts!

Fletcher turned six last December and right after his birthday they started slowly weaning his ventilator settings. By the end of February, Fletcher was on CPAP settings, meaning he was initiating all the breaths by himself! On May 24th I got a phone call from his nurse practitioner, Julie telling me they had just 'sprinted' Fletcher off the ventilator for 15 minutes! He was completely OFF the ventilator, breathing on his own for 15 minutes!!! So the process has begun to get him off the ventilator completely! Each week since, Julie has added 30 minutes at a time of him being off the ventilator. He's off the ventilator twice a day, once in the morning and once in the evening. Tonight he will go for 2 hours!!! He's tolerating it well. He's still a bit anxious about the whole thing but there is always someone near when he's off so they can help him if he gets in any trouble. If Fletcher can come off that ventilator completely he can come home and live with us! I don't know how long it will take but, there is an exit plan in place, kind of! We, of course, have always said we would bring him home when he got off the ventilator but I'm not sure 'other people' really thought he'd ever leave The Children's Center. It's very exciting and scary all at the same time. Exciting, because we'll all finally be under one roof. Scary, because he's still a kid with some pretty intense special needs and we'll be taking care of him by ourselves. Financially, it will probably be a stretch for us and I can't in my feeble brain see how the Lord will work that all out, but I'll let the Lord think on that one and work it out for us! I'm standing on Philippians 1:6 "For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus." The Lord is faithful and finishes what He starts. Our children belong to Him and He will take care of them. A good friend, reminded me that the Lord is not only preparing Fletcher, He's preparing ME for this new adventure of having Fletcher at home full time. I'd appreciate your continued prayers as we travel this Long Journey Home!

Such a happy boy...

Doing one of his favorite things...

At the OKC Zoo...

Happy Thanksgiving...

2010-11-25T01:19:00.004-06:00

Happy Thanksgiving, friends! We will bring Fletcher home today to spend the day with us! Also Craig's mom and his sister and her family will joy us! And I'm hoping to have a few extra friends drop by. Kayleigh's grandparents and her aunt should be here Friday. Busy, busy time for all of us.

Sorry I've been so bad at blogging lately, but like I always say Facebook is so much easier and I get instant gratification with comments! Selfish I know, but these days I'm going for easy!

Things are going pretty well around here. Kayleigh is busy with school, work and babysitting. And her social life! She's a busy bee and we really don't see her a lot. I'm guessing this is the Lord's way of easing us into her going off to college. Kayleigh's really a great kid and I'm so grateful for her!

Maddie's doing really well. She's gearing up for the church Christmas play, where she has the lead role and gets to sing a solo. Albeit it's a small Christmas pageant but she is taking her role very seriously! She is one of the older kids in Grace Kids so she thinks she's hot stuff! School is going very well for Maddie as well. She's a natural when it comes to learning and she loves it.

Fletcher is doing extremely well these days! I am so thankful for all he's doing and how 'healthy' he's been. Kindergarten is going particularly well and he has lots of sweet, new friends. Fletcher has been invited to the birthday party of one his friends at school! So he's going to his first friend party! We also have begun the potty training phase in his life! What an interesting process!

Craig and I are doing well. He's working and providing for our family and I'm just busy with the kids and life. I'm ready to start Christmas shopping and getting the holidays started! Well, that's it for now!

Just for fun...

2010-10-17T20:31:00.002-05:00

I just realized I haven't posted any videos in quite awhile so here's a little 'it's not the end of the month time for me to blog' treat!

September...

2010-10-02T23:12:00.009-05:00

We brought Fletcher home for Labor day. We invited several friends and family over to eat and just hang out. What a great day we had. My sister Kim brought her little long haired chichuahua, Jonas over to hang out with us. My girls fell in love and now ask everyday if they can have a puppy. UGH! Thanks Kim! Fletcher wasn't really thrilled upon meeting Jonas even though Aunt Kimmie tried her hardest!

Aunt Kimmie and Jonas...

at first Fletcher was alright with Jonas...

at this point Fletcher just kept signing ' no'...

Football season is upon us and Craig is raising his son right! Fletcher can say O and U. The picture below is of Fletcher's O. How cute is that?

O U!!!!

The Children's Center had their first annual Circus! How fun is that? Fletcher and I had a great time. They gave him some tickets...still don't know what we were supposed to do with them, but Fletcher enjoyed holding on to them!

happy to be learning about the circus...

the coolest kid ever!

me and my muscle man...

Kayleigh is in the Women's Advanced Choir had the first of their two Dessert Revues. It was so faun! It was called 'The Awesome Eighties'! You know Craig and I loved that! The 80's were totally our generation and we LOVED our music!! Kayleigh did great and learned just how important the 80's were to the music world! :)

Kayleigh and Kelsey...

We brought Fletcher home to help celebrate Craig's 44th birthday! We invited Craig's mom, Trudie and his sister, Kristi and her family over for dinner. Trudie made her amazing lasagna at Craig's request. We enjoyed a great day with our sweet family all under one roof! Craig had a terrific day. He got an iPhone 4 and a movie and PS3 game that he really wanted. What a treat to be a blessing to such a wonderful man!

Fletcher, Maddie and the birthday boy, Craig...

Another great thing that happens in September is the Buddy Walk! The Buddy Walk is an annual fundraiser and they are walks held all across the nation in the months of September and October. The Buddy Walk was established in 1995 by the National Down Syndrome Society to promote acceptance and inclusion of people with Down syndrome. as many of you know I have niece, Kylie and she had Down Syndrome. Kylie is 17 and the she is so much fun! We love just being with her. She loves music, all shows on Disney and her family! My sister Kim is very involved in the Down Syndrome Association of Oklahoma. She volunteers her time every year and helps anyway she can at the Buddy Walk. Kim is an amazing mom and I'm so proud of her!

The cousins at the Buddy Walk...

Kaleb, Fletcher, Kylie and Kim...

the whole gang...

Hope TV...

2010-09-29T16:08:00.003-05:00

The Children's Center recently put together a video to show to Fletcher's classmates before he started kindergarten, it was a BIG hit and so well done. They decided they wanted to share Fletcher's story on their website section, Hope TV. They interviewed me and squished me into the middle of the video in order to give the viewers a little bit more information about our boy. If you'd like to click on the link to see the interview...

http://www.youtube.com/watch?v=aUcNA0L30dw

Bittersweet...

2010-09-11T19:42:00.008-05:00

August was truly a hard month for us, filled with sadness and joy and new adventures. The second week of August Craig's dad, David was in the hospital. I received a phone call from my niece, Devon asking me if it was possible to bring Fletcher to the hospital to see Papaw. 'Of course' was my answer. So Craig and I checked Fletcher out of TCC and took him to see his Papaw. David had no idea Fletcher was coming so it was a very nice surprise for him to see his only grandson. Six days later David passed away, Craig and I were so happy that we made that visit happen. It's comforting for us to know that they got to see each other one last time.

David and Fletcher...

Our sweet little church has been through a lot in the last nine months. So it was quite refreshing to have VBS for our kids. There were more volunteers than there were kids! It was great and the kids and adults had a lot of fun. Our VBS curriculum had a rain forest theme and one night we had a company bring out extreme animals for the kids to see and touch!

Maddie and a baby alligator...

Maddie holding a baby kangaroo...

The girls started school on August 19th. We started our day with a good breakfast I took Maddie to school and for the first time in ten years I didn't take Kayleigh to her first day of school! She drove herself, of course! WOW! The milestones that are happening around here are a bit overwhelming, they're good and I'm grateful for them, but they just make me shake my head in disbelief! Where has the time gone? How did it go by so quickly? It's so hard to believe I have a Kindergartner, a third grader and a JUNIOR!! They've been in school now for three full weeks and things are going well for both my girls. Kayleigh's had block scheduling since she started high school and really liked it. Well, this year they changed it to seven periods, she's not a big fan of the shorter class periods, but she's getting used to it. Maddie has really enjoyed third grade and her teacher, Ms. Tate. Also, Maddie was tested last year and has been accepted into the gifted program at her school. It's called PEAK and on Mondays she spends the entire day with her PEAK teacher, Mrs. James and the other PEAK kids learning cool stuff. Maddie now wishes everyday was Monday. It's such a blessing seeing her excited to learn!

Maddie's first day of third grade...

Kayleigh first day of her Junior year...

Maddie and Kayleigh...

Maddie out in front of her school...

Maddie and Ms. Tate...

On August 30th Fletcher started Kindergarten at Bethany Elementary! He goes to school on Mondays, Wednesdays and Fridays for two and a half hours. Fletcher is in a 'regular' class with 'regular' kids and so far it's been a great experience. His teacher, Miss Metcalf is young, cute and fun. Fletcher has an aide, Mrs. Karlene and I'm in the classroom as well, just incase an emergency should arise. The kids in his class have been delightful and are treating Fletcher with lots of love and respect. I'll be honest, I was very hesitant about putting Fletcher in public school. I was worried about the kids being mean and about the parents being upset that there was a kid with extreme special needs in their kids class. Craig has been my rock. He's pointed only to the positive and the future for Fletcher. I never in a million years thought this could be a reality. We're doing something quasi normal...kindergarten!

waiting his turn to get on the bus to go to school...

Fletcher and Miss Metcalf...

a picture one of Fletcher's new friend, Reid drew for him...

David Lee Burns...

2010-09-01T17:15:00.006-05:00

On August 15, 2010 my father-in-law David, went to be with Jesus after a 7 week battle with lung cancer. David was a wonderful husband, a great dad, an even better papaw and a loving father-in-law. David lived out his faith and he was very involved in the Kairos prison ministry, Good Shepherd hospice, church and VERY involved with his family. He will be greatly missed by all of us.

July - it's been hot and it's been busy...

2010-07-30T16:55:00.011-05:00

We brought Fletcher home for the 4th. It dawned on me that the 4th of July is the only holiday that he's been home every time. It's a tradition I'll do anything to keep going. Craig's dad, David was in the hospital so we decided that since we had Fletcher out that we would swing by the hospital and surprise him and hopefully brighten his day. The look on his face when we wheeled Fletcher into his hospital room was precious. He loved getting to see Fletcher! Later in the afternoon Craig cooked hamburgers and hot dogs and we enjoyed having his family here as well of some dear friends who have made being at our house on the 4th their tradition! I love being apart of someone else's traditions. We ended the evening by going downtown to watch fireworks. It did make for a long day but it was a blessing to be together.

our traditional picture in our old navy flag shirts...

sweet friends...

the Hess family...

the Jarvis family...

getting ready to watch fireworks...

The Children's Center had their annual Olympics and Fletcher participating in them like usual. He was kind of cranky that day and really only wanted to be in constant motion, meaning he wanted me to keep that wheelchair moving. We had fun anyway. The girls and I would walk him around between each event that he participated in. I loved being with all three of my kids at the same time.

Fletcher didn't want these medals around his neck so Mommy 'got' to wear them...

Marathon event...

killing time and comparing shoe size...

Pipe Wars event...

Demolition event...

Another wonderful thing that happened in July was a visit from one of my oldest and dearest friends, Christian. We went to elementary school, Jr High and High School together. But it was in high school that we became best friends. We walked together at our graduation. He's always been a great friend to me and I treasure our relationship. Christian now lives in New York City so when he comes to town he let's me know and we always try to get together. This particular visit he wanted to meet Fletcher so it was my pleasure to introduce them!

Christian, Fletcher and me...

We had Fletcher's Patient Care Conference (PCC) in July. We meet every 90 days and Fletcher's doctor, nurse practitioner, teachers and therapists get together for a round table discussion where everyone reports on Fletcher's progress over the past 90 days. What an amazing meeting we had! Fletcher has gained two years in his comprehension and is almost age appropriate. They consider him to be around 4 1/2 years of age cognatively! He's doing so well in school and in all his therapies. We're so excited for him. By the end of the meeting Fletcher's nurse practitioner asked what the possiblities were for Fletcher to attend public school. It seems that the possiblities were endless! They believe Fletcher will thrive educationally being mainstreamed into a regular Pre-K class. So, this fall Fletcher will be enrolled in Pre-K at Bethany Public Schools. He's going to attend class three days a week. At this point the plan is for me to go to school with him since I'm medically trained to take care of him. But TCC is looking at every option such as a nurse or RT to go with him. So we'll see how it all works out. I'll be honest with you...this scares me to death! But I know it will be so good for Fletcher and the kids at Bethany. I think everyone there will fall in love with him just like they have at TCC. It's scary to me because he's safe at TCC from kids being mean to him and teasing him. We went to the Bethany Library one day last week for a toddler time sing a long and the kids turned around and just stared at him. Fletcher didn't even notice, but I did and it was hard for me. But I know once they get to know him it will be okay. One of my friends said she would pray that I would have peace in the release...I need to let him go so he can reach his potiental and with as great as TCC and his teachers are he doesn't really have peers at TCC. He's very smart and social and he needs that interaction with 'regular' kids. So pray for us as we step into this next phase. It's going to be great, but at the same time it's going be hard on this mommy.

Hello? Is this thing on...

2010-07-25T15:57:00.002-05:00

okay so no one is commenting on my blog...is anyone reading this thing?

So this is June...

2010-07-01T20:28:00.009-05:00

June was a busy month. Fletcher got his summer haircut so he's good to go! TCC had a land run/western days event which was a lot of fun. We spent a Saturday on Route 66 and went to Pop's and the Round Barn that was a nice day trip that same evening we went to a drive in movie! Maddie's recital was in June as well. This year she was in two classes therefore she had two routines and two costumes. She did very well and we were very proud of her. Fletcher's teacher came up with a great idea of inviting some of his peers outside of the TCC to come and go to school with him so we invited some kids from church. I'll be honest and say the experience was a new one for our church kids and Fletcher. But it was a great way to expose them to each other and see Fletcher in his element. It was a great success! Maddie has wanted to cut her hair and donate it to Locks of Love. So we waited until after her recital and off we went to Magnolia Salon and our sweet friend Jill cut off about 14 inches! She looks precious and she loves it! We brought Fletcher home for Father's Day. It was a very low key day and we enjoyed it immensely! So low key I only took one picture! Not happy about that but it is what it is. Craig's best friend, John's daughter Jordan got married and we had a great time at the wedding! Lots of dancing and lots of laughing! Great night! Craig had knee surgery and is healing up quite nicely. TCC had a their annual Treble Makers concert with a patriotic theme. Fletcher's little group did 'You're a Grand Old Flag' where they used their 'voices' on the word 'flag' too cute! Maddie did a dance with the little girls from church who came to school with Fletcher. That was awesome! Last weekend my nephew Kyle got married at The Dominion House in Guthrie. It was a beautiful ceremony with an absolutely fun reception. Something about being with my sisters dancing and laughing our heads off that was truly good for my heart! Well there you have that was our June! Hope you enjoyed it!

Fletcher's summer cut...

Western Days store where Maddie took over the cash register and was really good at it!

the land run where Maddie & Fletcher were 'sooners' they copped a nice spot with a shade tree and handicapped parking!

The Round Barn...

Maddie's recital...

we went to see the boy after the recital...

our friends come to school...

before...

after!

Father's Day...

Maddie, Jordan & Kayleigh...

chocolate fountain at the wedding...

me and Craig at the wedding...

best friends...

Burns granddaughters...

my patient...

Treble Makers concert...

sweet friends...

Kylie & Kaleb at Kyle's wedding...

my sister Kim & me...

me & Craig...

my niece Amber and me...

Okay so this is May...

2010-06-17T09:08:00.010-05:00

So it's June 17th and I'm posting for May. We'll start with Mother's Day. The Saturday before Mother's Day my sweet sister ,Dawn had a luncheon in her home to honor our mom. It was very nice and we had a lot of fun being together. My niece Amber was there as well. So much fun! On Mother's Day one thing that I wanted was to take Fletcher to church with us and then home to spend the day. It was fabulous as always to have my little family under one roof.

Kim, me, Mom, Paula and Dawn

Kayleigh, me, Fletcher and Maddie

Just my kiddos

On May 16th we had a huge hail storm here in Oklahoma City. We had minimal damage to our home, but Craig's car was totalled in the storm. We decided to keep his car and fix the damage done to it and have another car paid in full. Wahoo! We also got a new roof at no cost to us. Another wahoo! And added about $10,ooo value to Casa Burns!

Casa Burns after the storm

Another event that happened in May was my 45th birthday. WOW! It's really hard to believe I'm approaching the big 5-0, but I am. It was a great day filled with love, flowers, sweet phone calls and dinner at one of my favorite places, Outback.

one of my favorite birthday gifts...

One of the BIGGEST events in May was my Maddie turned 8! She had her first slumber party which went pretty well. Who knew 8 year olds would have drama! We endured some crying and pouting and the occasional 'I'm bored' but all in all it was a great party. Another thing Maddie really wanted for her birthday, since it was on a Sunday was for Fletcher to go to church and come home. We totally accommodated her in that wish! We invited our families over as well and enjoyed ice cream and cake and lots of presents!

Maddie age 8

the slumber party girls

Lastly, we celebrated another fabulous milestone in the Burns family. Kayleigh now has her very own car! We went to a few car lots and looked at some cars for our sweet Kayleigh. She is now the proud owner of a 1998 Pontiac Grand Prix! I think this is super neat seeing how my first car was a 1976 Pontiac Grand Prix! She loves it and is having lots of fun in her car owning, driving around independence!

signing the paper work

Kayleigh and her first car

I'll leave you with a few videos of the boy! Enjoy! He's 'talking' so much these days and really doing so well in physical therapy!

whew...

2010-04-30T17:01:00.009-05:00

I've decided that maybe I'm capable of blogging once a month...and I've barely made it for April! So here's our month in pictures!

"How To Train Your Dragon"
(highly recommend this movie! We loved it!)

coloring Easter eggs

(our eggs were kinda boring this year the coloring set I bought only had THREE tablets in it!)

family picture on Easter
(tradition for our family)

'some' of the Milgrim grandchildren
(another family tradition but my little grey house isn't big enough to hold 'all' the Milgrim grandkids!)

2nd grade field trip to the Cowboy Hall of Fame
(such a beautiful museum)

EEG for Fletcher

(all is well, they thought he had a few seizures so they wanted to be safe and check things out)

vocal music program

(isn't she gorgeous?)

Kylie's 17th birthday party

(lot's of fun!)

the units open at TCC

(Maddie can visit her bubba in his unit)

sweet visit from some of our Tulsa friends

(me, Garrett, Christine, Janet & Fletcher)

Oh yeah, I don't have a picture but we have a legal driver in our family!! Kayleigh took and passed her driver's test on Wednesday! Whew!!

Woooooo...

2010-03-26T07:54:00.006-05:00

So I didn’t blog in February and I’m barely making it for March!!! Things are going well around Casa Burns just busy! Seems as if every aspect of our lives are busy kids, school, church, dance, Girl Scouts, TCC etc.

Kayleigh’s finishing up her sophomore year and it’s been a good year for her. She’ll also take her driver’s test at the end of April and will be driving!!! Kayleigh tried out for Choral in January and made it! She’ll have about 4 performances in the next two months. We’re looking forward to watching her perform. Kayleigh spent spring break in Mississippi with her grandparents and came home to SNOW! Yes, it snowed the first day of spring in Oklahoma City. We have had some crazy weather this winter.

Madeline is keeping me busy as well. She’s finishing up 2nd grade and will be 8 in May! This is has been a great year for her, too. At her last conference her teacher said she’s ready for 3rd grade! ‘We’ sold 474 boxes of Girl Scout cookies in January until the middle of March. And by ‘we’ I mean me! Our main cookie buyers were at TCC and our church! Maddie is getting ready for her dance recital. This year she’s in ballet and jazz so she’ll have two numbers to perform and two costumes! She’s very excited about both costumes!

Fletcher is one busy boy, too! He’s excelling in all his therapies especially physical therapy! Here are a few things his working on, sit to stand, gait training (basically a fancy walker) standing in a stander, power mobility and scooting in a sitting position. He’s truly getting some independence! In February Fletcher had a dysphagiagram and was cleared to start taking food by mouth! So in speech therapy he’s making tiny attempts at eating things like apple sauce, peaches and suckers to name a few. Fletcher’s not really a fan of the whole eating thing so that’s been a little tough. We’re praying that he’ll learn to love food like the rest of the Burns family! Fletcher’s also very vocal these days! He’s really using his voice! He says blue, purple, ma ma, bye, hi and now Fletcher Burns! What a blessing this boy is to me!! The next best thing that’s happening is Fletcher is on room air everyday during the day! Meaning, he’s not requiring any oxygen other than his own! The VERY best thing is he’s grown another ¾ of an inch in the past three months! I need to do some research but I believe that makes 3 inches in a year!!! You might remember that for 3 years Fletcher did not grow at all, not even a tiny bit. The Padmidronate infusions are working!!! Thank you Jesus!

The pointer finger it's a wonderful thing...

2010-01-30T21:34:00.002-06:00

I've really taken a lot of things for granted in my life...like how I am able to use my fingers without any thought whatsoever...Fletcher's teachers and therapist have been teaching him to use his pointer finger...he's been using a communication device in class each day that requires him to push little buttons. It's only been a few weeks and I think he's mastered it...

just a little funny....

2010-01-11T07:42:00.003-06:00

Thought this might bring a smile to your face today. Fletcher got a doctor kit for Christmas from his teachers so I thought it'd be funny to show him one of the many uses of a bed pan...

Kayleigh turns 16...

2010-01-08T22:44:00.003-06:00

Wednesday, January 6th Kayleigh turned 16 years old! Craig and I are so proud of the young lady she is turning in to. What a gift Kayleigh is to us. Exciting things are happening with her she has her permit and is driving but won't get her licence until April. On Wednesday night we took Kayleigh to Outback Steakhouse for her birthday dinner and tomorrow afternoon she'll have her party at Laser Quest where we'll play laser tag. I'm making a big pot of tortilla soup and having everyone over after the party. It should be lots of fun!

Fletcher turns five...

2010-01-08T18:55:00.008-06:00

On Decemeber 30th Fletcher turned five years old! It's hard to believe my baby boy could possibly be five! For his birthday party this year I decided again to do a 'favorite things' theme. Fletcher loves his stackers, duplos and books. So I went to a bakery and asked if they could duplicate the stackers and duplos in fondant and then draw one of his favorite books on the cake. I got exactly what I asked for and was extremely pleased. We had about 40 people come to celebrate with us. Our family and friends always make us feel so loved! One of my girlfriends came and took pictures and did an amazing job. Thanks again, Janet! And thanks to everyone who came and blessed our family that day!

wearing mommy's glasses...

the cake...

Fletcher greeted everyone who walked in the door...

me and my mom...

me and my friend Janet...

Kaleb and Fletcher...

my sister Dawn and one of her grandbabies, Katie...

a few of our guest, Ryan, Isaiah, Conner, Elli and Maddie...

Trudie, Evan and Megan...

Baby Evan and Fletcher...

Ryan, Ellie Kate and Fletcher...

Fletcher not real sure about those fondant stackers...

me and my boy...

Craig and Fletcher...

Kayleigh and Fletcher....

Christmas and the New Year...

2010-01-08T17:19:00.011-06:00

Well, I guess I'll start with Christmas. We had a blizzard here in Oklahoma City on Christmas eve which ruined our plans to bring Fletcher home to spend the night like we normally do. Which made for a very sad mommy. Craig was sad as well and wanted to at least try to go to TCC and see how bad it was out there. Well, it was bad! We had to be realistic. It was entirely too risky to put our ventilator dependant child and all his medical equipment in our minivan. What if we got stranded? What if we got stuck? What if...so we drove several miles up the road and decided to turn around to come home without Fletcher. We had to also think of the girls if we were to get stranded and how it would ruin their Christmas. So home we went. We carried on with our family traditions of the kids opening one present (which is always an ornament), Craig read the Christmas story to us and we sang Happy Birthday to Jesus and ate a piece of the cake the girls and I made earlier that day. Santa came and went and we woke up to the beautiful 3 to 4 feet of snow outside. Then my very sweet husband shoveled the driveway and sidewalk for over an hour so we could go and get our boy! We took our time getting to TCC and back home with our precious cargo. All was right in our universe...all five of us together for Christmas day. Craig's parents and his sister and her family came over and ate dinner with us. The roads were still quite treacherous so they were only here for a short while but it was great to be with family.

Craig, the girls and I celebrated New Years Eve here at home. We ate some tortilla soup, watched Aliens in the Attic and played Guitar Hero World Tour. It was a nice way to bring in the new year. We are blessed and looking forward to 2010 and all that it has in store for our family.

Birthday time...

2009-12-28T10:22:00.003-06:00

It's so hard to believe that my little Fletcher will be 5 years old in just two days! We're planning on bringing him home for a birthday celebration on January 2nd...please join us if you'd like...

Welcome to Holland...

2009-12-20T15:01:00.002-06:00

My friend Ryan sent this to me this week. She and I have the bond of having beautiful children with multiple disabilities. This spoke volumes to me and I couldn't quit thinking about it, so I just had to share it with all of you...this pretty much sums it up...in case you ever wondered...

Welcome to Holland
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you are going to have a baby, it’s like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans, the Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland???” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there has been a change in the flight plan. They have landed in Holland and there you must stay.

The importance of this is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go and buy new guide books. You must learn a whole new language. You will meet a whole new group of people you would have never met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you have been there for awhile and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips…Holland has Rembrandts.

But…everyone you know is busy coming and going from Italy. They are all bragging about what a wonderful time they had there…and for the rest of your life, you will say, “Yes, that is where I was supposed to go. That is what I had planned.”

And the pain of that dream will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Hope you have sound because this is hilarious...

2009-12-18T00:25:00.002-06:00

In many ways Fletcher is like a typical little boy...he absolutely loves when you tell him 'that's gross!' or say 'you're so stinky'. Today Fletcher sent his teacher running in the opposite direction because of all the snot he was producing. It was truly grossing her out...well he thought it was hilarious. I don't know that I've EVER seen him laugh out loud like this. He usually laughs but without noise so this is my most favorite video of all time! Hope you enjoy it as much as I do!

2009-11-28T23:28:00.005-06:00

Well we had a wonderful Thanksgiving spent with wonderful people! We had a house full and loved every minute of it. Craig and I picked up Fletcher at TCC and quickly brought him home. Boy was it great having him with us. We just feel complete when all of our children are together in our home. Craig's Aunt Susie came in from Houston for the holiday as well as her son, Stephen and his sweet family were here from Corpus Cristi. So great to see such lovely people. My sister Dawn and her husband Mike joined us for a quick visit too. Craig's parents Trudie and David along with Craig's sister, Kristi and her family were here too. Fletcher was in rare form that day and we were so thankful for that.

Man of the hour...
Amanda, Stephen
Amelia and Max

All the Burns grandchildren

Rodney, Fletcher and Kristi

Fletcher and Aunt Susie

Three generations of Burns'

Me, Fletcher and Craig

The loves of my life...

Kayleigh, Fletcher and Maddie

Today we decorated our Christmas tree which is always fun! We've hung our stockings and tomorrow Craig and Kayleigh will put up the outside lights. I'm hoping to start my shopping next week. I just need to get a list made so I can start checking it twice! A lot to do around here!

Happy Thanksgivng...

2009-11-26T08:22:00.003-06:00

Hoping today is truly a day of thanksgiving for you and yours! It is for us. Today we will bring Fletcher home for the day. It's been a battle the last few weeks with TCC. Some things are changing up there and we're not very happy with the changes. TCC has decided that they don't want any of their equipment to leave the building for home visits. So now the equipment, ie ventilators, concentrators, O2, suction, feeding pumps, etc have to be rented by a medical supply company. Not very family friendly if you ask us. Not really understanding the reasons they're giving us either. Our hands are tied in this situation and we don't like it at all. So we've basically been battling with these people and it's made for a stressful time at our house. I will say the Lord is in control and He gave us favor in one area in particular when it came to Fletcher's ventilator. They were trying to send him home on an older model ventilator! Okay an older model feeding pump, sure. An older model suction machine, no problem. But the very source of his life support? No way!! But like I said, the Lord let TCC find favor with us and we are at least bringing Fletcher home on his vent. Thank you Jesus! I could go on and on with some of the things happening up there but I will not.

Instead I'll focus on what I'm thankful for...I'm so thankful for my relationship with Jesus and that He loves me just the way I am otherwise I'd be in poor shape! I'm thankful for Craig and the way he loves and cares for me and our children. I'm thankful for my Kayleigh, my Maddie and my Fletcher what a source of joy they are to me. I'm privileged to be their mother and Craig's wife. I'm thankful for my mom and the way she taught through example of how to make a home and care for children. I'm thankful for my siblings...how fun it was to grow up with all of you. How fun it is be grown up with you and laugh and cry together and always know we have each other no matter what. I'm thankful for my in-laws and Kayleigh's grandparents. I really don't know what we'd do without their help and their wisdom and their guidance as we navigate parenting. I'm thankful Craig's sister and her family they're truly a blessing to us as well and lots of fun to be with! I'm thankful for my friends. I wish I could list you one by one but I am blessed with too many to for that. Just know you all are loved and appreciated! I'm thankful for my little grey house and the love and laughter that fill it's walls. I'm thankful for our cars. We just paid one of them off! I'm thankful for TCC even though it's not perfect it is serving it's purpose. There are truly so many things I'm thankful for these are just a few. I pray your Thanksgiving is filled with love, laughter and lots of good food and conversations today!

Look what the Lord can do...

2009-11-09T17:54:00.003-06:00

Today Fletcher started the journey of using a gait trainer! He wasn't real jazzed about it at first I think just because after class he and I usually go on a walk around the building. Instead today after class we did gait training. Fletcher had a whole load of women that were behind me cheering him on! It was a great morning and I'm so looking forward to what the Lord has in store for this little guy!

Surgery update...

2009-11-05T16:55:00.006-06:00

Fletcher's surgery went very well this morning. We left TCC at 5:45 and returned around 11:00 this morning. It was a very simple procedure since they just took out the port and didn't replace it. Fletcher bounced back quite well. He took a nice nap this afternoon while I was taking Maddie to see an endocrinologist and then to the dentist where we found that she has 4 cavaties. It's been a very busy day and we're all tired. Thanks for your prayers!

waiting to go to the OR...

Surgery for Fletcher...

2009-11-03T16:10:00.002-06:00

Fletcher is still having problems with his port. The skin has not gown back over it and they have to keep a special dressing on it. And the dressing really bothers him and he just scratches at it anytime he can get his grubby little hands on it. We have come to the decision to remove Fletcher's port and NOT replace it. He's been doing so well lately and the last time he had Pamidronate they used a peripheral line and he did great. So there is really no need to have immediate access to a line. And it will give his little chest more time to recover from all the lines he's had over the last four years. The port that he has now is in his leg and it's been a pain in the behind since the day he got it. So, Thursday morning we'll go to Children's Hospital and Dr. Tuggle will remove that nasty ol' port. It's kind of a relief to think about one less thing to worry about with our boy. We'd appreciate your prayers. I'll keep you posted. Thanks!

Fletcher does the classics...

2009-10-28T16:27:00.003-05:00

Fletcher's been in rare form lately...

Will you look at that...

2009-10-23T18:25:00.002-05:00

Since my last post on October 12 you'll remember I posted a video of Fletcher 'standing'. It took TWO people to help him stand. In 11 days Fletcher is only needing the assistance of ONE person to help him!! Watch him push down with his feet like he's supposed to! Proud doesn't describe how I'm feeling!

Look who's standing...

2009-10-12T16:14:00.003-05:00

Today I had a meeting at TCC so I left my camera in Fletcher's bed just in case he had PT this morning. He did have PT and a nurse videoed it for me. This video took my breath away...

They recently measured Fletcher's legs and one of them is 3/4 of an inch shorter than the other. They are having a special lift made for his shoe so that he'll be able to balance better. Once the lift is done Fletcher will get to start using a gait trainer, which is basically a walker. Exciting things are happening with our boy!

Here's what Fletcher's been up to lately...

2009-10-10T22:06:00.003-05:00

Like I said in my last post we brought Fletcher home for Craig's birthday and we went to the Buddy Walk to support my niece Kylie, who has Down Syndrome. Fletcher did great, probably one of our best trips home! Fletcher is doing so well these days! He's started standing in the stander twice a week and is doing great! We had his Patient Care Conference and he grew another inch! Two inches in six months! That's a miracle folks! We saw a plastic surgeon this week about removing the nevus from Fletcher's neck, forehead and right temple. He'll be having surgery in about a month or so. We'd truly covet your prayers as we make decisions concerning the surgery...I'll keep you posted. But for now here's some fun videos of our silly boy!

Good times...

2009-09-18T17:28:00.012-05:00

In late 2007 when we found out about Fletcher's rickets we had to alter his physical therapy...a lot. They eliminated a few things, adjusted a few things but one thing that was very important and very valuable was standing in the stander. His PT eliminated standing because it was just too dangerous with Fletcher's fragile bones. Well, for the last two Thursdays Fletcher has tolerated standing in the stander because this boy is growing, he's stronger and it's just time for him to start working on bearing weight! I can't begin to tell you how exciting this is for me. Fletcher looked so BIG and TALL in that stander yesterday and I was so proud of the forty minutes of his hard work! We did have to work overtime trying to keep him busy and distracted. Fletcher is also rolling over now and bearing weight on his arms which is an amazing accomplishment for our little guy! I can't say it enough...the Lord is working a miracle in Fletcher! It's such a privilege watching the Lord at work in Fletcher's body. Almost two years ago we were working a plan of letting him go, managing his pain, preparing ourselves for the worst. This boy was 'wasting away' his bones were, for lack of a better word empty! They told us he had the bones of a 95 year old woman. Look at him now! Nothing is going to stop him. I believe one day Fletcher Samuel Burns is going to walk! I'm so grateful to feel hopeful!

He did it!! And with a smile on his face!

Fletcher and a very proud Mommy

Fletcher's last Pamidronate infusion went well. We did have one problem. Fletcher had to have a peripheral line since we were having problems with the port. Well, on the second day of the treatment they found that his IV was in an artery instead of a vein! Not good! But it all turned out fine they changed it out and put it in his other foot and finished the treatment. Through the process we found that the port is clean. No MRSA and it's usable. Praise the Lord. They are keeping it covered and using a special bandage that should help the skin grow back over the port. So, we'll see what happens and I'll keep you posted.

We are bringing Fletcher home today! We have a few things planned. We're going to the Buddy Walk at the Bricktown Ball Park then home for football and a yummy birthday dinner for Craig! I'll post pictures soon. Have a great weekend!

Today...

2009-09-10T17:35:00.006-05:00

Today Fletcher started day one of a three day infusion therapy of Pamidronate. They had to start a peripheral line on him this time because his port is a mess right now! The skin around his port is colonized with MRSA so it's not safe to use the port because we don't want the port infected with the MRSA. The port had been oozing pus so they've been culturing it every week to see if it is growing anything so far so good, but the skin that covers the port is non existent and the actual port is visible! It is quite a sight to see. They are keeping it covered and working on different options to make sure we can keep it.

Today Fletcher's dermatologist, Dr. Adelson came to check on him. Fletcher has several warty moles on his head and Dr. Adelson is trying to find the best and safest way to remove them. So that's been tabled for a bit. He also suggested that we start a relationship with a pediatric plastic surgeon. Fletcher is doing so well that we think it's a great idea as well. So I'll keep you posted on all that.

Labor Day...

2009-09-08T07:59:00.005-05:00

We brought Fletcher home for Labor Day and enjoyed a wonderful time with our families and great food! Fletcher did extremely well we could tell he really enjoyed being at home. He didn't nap all day! Fletcher entertained all of us and we all entertained him! It was a great time at home for our family one of our best trips home so far. Fletcher is all personality these days! What a fun little kid he really is! We plan to bring Fletcher home on the 10th for Craig's birthday. We're also going to take Fletcher to the Buddy Walk in Bricktown. It'll be a first for him. We're a little nervous but I think he'll be fine. I'll keep you posted! Well, that's all I've got for now!

Fletcher is 'bumping fist' now....

Fletcher and Daddy

Kylie, Kim, Fletcher and Kaleb

Megan, Kayleigh, Fletcher and Devon

Fletcher and mommy!

This kid cracks me up!!

Here's some videos....

2009-08-21T21:52:00.006-05:00

I know, I know...

2009-08-20T16:07:00.017-05:00

where have you been? Guys, I'm on Facebook and it's so much easier to update and I get instant gratification and feedback...though I know blogging is important too so here goes...

The girls went back to school today. It's official we have a sophomore and a second grader! Today has been an emotional day for me. This morning I realized that if Fletcher lived at home he would've started Pre-K at Will Rogers with Maddie. Please know I'm so grateful for everything Fletcher is doing and I'm loving all the milestones he's reaching, it was just sad not to drop off another Burns kid at WRE today. How neat it would be for Maddie and Fletcher to go to school together, see each other in the halls, her to be protective of him...blah blah blah cry cry cry! It's been a hard day but I am happy for my girls and I know it's going to
be a great school year for them.

Our sweet sophomore!

Our sweet second grader!

Mrs. Pingleton, Maddie's 2nd grade teacher

In other news, Fletcher is doing fabulous! We had a Patient Care Conference (PCC) in July with all of his caregivers, it went extremely well. The best news of that PCC was Fletcher Burns has grown ONE FULL INCH since the his last PCC. Who cares, right? Listen to this...Fletcher literally has not grown since he's been at TCC. He's been 27 and 1/4 inches the entire time we've been there! The Lord is up to something with that boy! Fletcher's also starting to scoot around. His PT, Darcey is working with him to perfect his scoot so, he can use it to get around. It's really pretty hilarious and he has lots of fun scooting around on the mat in the gym. He's also sitting up unassisted for about 30 minutes at a time! Fletcher is getting stronger with each passing day. I feel like I'm witnessing a miracle and I feel hopeful for his future. Maybe he will come home and live with us one day? Maybe he will walk? Maybe he will talk? Maybe he will get off that darn ventilator? Only the Lord knows for sure, but it feels good to have hope for my boy!

My boys! Oh how I love them!

Sitting up all by himself and quite proud!!

Playing on the mat with mommy!

Legos!!

Maddie is doing well, too. She's probably going to have the toughest time out of all of us, with getting into the whole school routine. That girl really enjoyed sleeping in everyday! Maddie started dance last Monday. She's taking ballet and jazz. Two separate classes taught by two separate teachers this is a first for her. She's very excited about changing classes. Her ballet teacher is the daughter of the owner of the studio. Her name is Savannah and she's probably 18 years old, well Maddie thinks it's so cool to have a teenage teacher. I think Maddie will really enjoy jazz. It's so up her alley!

Kayleigh has had a very active summer. We drove her to Mississippi to visit her maternal grandparents and she stayed for four weeks! Craig, Maddie and I only stayed for a few days. We had a great time seeing family and friends. Her grandparents also took Kayleigh and one of her friends Marley to Gulf Shores and they had a blast! Laying on the beach and shopping what more could two teenage girls want? Kayleigh is now 15 and 1/2 years old so you know what that means? We're about to have a driver on our hands! UGH! How can it be that she's old enough to drive? It seems like yesterday that I was taking her to her first day of school and snapping pictures with teachers and new backpacks and lunch boxes! She's really a delightful young lady and we're so proud of her! We're praying that this year is great and that she enjoys learning!

Maddie and Kayleigh one last hug!

Craig and I are doing great! He's just working away and I'm so grateful to have a husband who goes to work each day without complaining to provide for his family!! God is good to the Burns family! Craig was invited to his college football 20 year reunion in Mississippi. We had a great time meeting all these football players we have heard about for years!

Craig and his linemen buddies! Go Choctaws!

On our quick trip to Mississippi

Just for fun...

2009-07-23T16:20:00.010-05:00

Fletcher loves brushing his teeth theses days....

Lovin' on each other...

Going through Mommy's purse...

Fletcher's Story Part 4

2009-07-17T21:48:00.005-05:00

I began writing Fletcher's story and got side tracked awhile ago. Well, Maddie is sick and we've been home all day. So, I decided today would be a good day to 'finish' the story. This is the fourth installment if you'd like to read the first three they're on this blog as well. Click on 'Fletcher's Story' on the side bar.

Here goes...Fletcher was hospitalized 4 more times that year. Each time we went straight to the PICU and he would be intubated each time. In August 2005 after 16 days at home Fletcher had to be hospitalized again. We were in the PICU for 41 days. After having an Echocardiogram we found out that Fletcher had a heart condition called IHSS. (Idiopathic Hypertrophic Subaortic Stenosis) Meaning Fletcher's heart was working and pumping so hard the muscle had grown bigger creating a stenosis and it was not allowing the blood in his heart to flow properly therefore he was retaining fluid in his lungs. Treatment options were up in the air because they weren’t sure what his underlying problem was. They’d been treating his lungs so aggressively they didn’t know if his lungs were causing his heart problems or if his heart was causing his lung problems. They began treating Fletcher with beta-blockers and calcium channel blockers, which are blood pressure medications. We went home on October 9, 2005 on the blood pressure meds. On October 27, 2005 I took Fletcher to what I thought was going to be a routine cardiology appointment. Instead that day will forever be remembered as the last day Fletcher lived in our home. Our cardiologist, Dr. Razook did an echo and EEG that day and decided the medication wasn’t working. Fletcher’s numbers were off the charts and he needed to be hospitalized, but first Dr. Razook wanted a second opinion from our pediatrician, Dr. Albiek. So, we left one doctor’s office to go to another and left Dr. Albiek’s office on a stretcher to go straight to Children’s Hospital via an ambulance. Now we’d been to Children’s Hospital for a heart cath but never been hospitalized there. Dr. Albiek pulled some strings so we were admitted directly to the PICU. Well, that little move resulted in us being treated like lepers, because according to one nurse, ‘we didn’t go through the proper channels to get there’. What she meant was we didn’t sit in the ER with 5000 other people with our VERY sick baby. Needless to say, Children’s Hospital was not my favorite place. No one knew Fletcher there and none of the nurses or doctors loved and treated him the way we had become accustomed to at Baptist Hospital. But we had to be there because that’s where the heart docs were. Anyway, within the first few days of being hospitalized we found out that Fletcher had para-influenza and he was getting sicker each day. It also turned out that they wanted him to have open-heart surgery to repair the stenosis on his heart. He was so sick and one of the intensivist told me they had done all they could do for Fletcher and left me standing at his bedside feeling like I had been run over by a mack truck. Since he was sick they didn’t want to operate on him, but if they didn’t he was going to die. On November 10, 2005 Fletcher had open-heart surgery. It was a great success. The doctors were very pleased with how well the surgery and recovery process went. The week before he had surgery they put Fletcher on an INO ventilator, so he was on two vents at one time. Well, two days after surgery they weaned him completely off of the INO vent, he had one of two chest tubes removed, he also had a temporary pacemaker and he no longer needed it so it was removed. Three days after coming off the INO vent they tried to wean him off the regular vent. Well, that lasted about 6 hours and they intubated him again. They tried again to extubated five days later with no success. For two days his heart rate was a little high, but the doctors weren't concerned since the stenosis was gone. The plan was to try and get him off the vent, have some recovery time then take our boy home! This would mean that his heart problem had caused his lung problems and since his heart was fixed and we could go home and live our lives. They could not get Fletcher off of the vent so after 25 days at Children’s Hospital the heart surgeon, Dr. Pastuszko asked us if we’d like to go back to Baptist Hospital to see if they could get him off of the vent. We said YES!! We were out of there within a few hours. So, on November 21, 2005 we went back to what had become our home away from home, Baptist Hospital. We got all settled and the next day would be a day of meeting with doctors and trying to come up with a plan to wean Fletcher off of the vent. They tried several times to extubated Fletcher with no success. They told us it was time to look into long term care for Fletcher. Craig and I had to make some tough decisions. We prayed and we were prayed for and we found peace with our decision. Fletcher was unable, at that point to come off of the ventilator, he couldn’t even tolerate the weaning process. Which told us his lungs had been causing his heart problems. His heart was fixed but his lungs were not. Craig and I, along with the PICU doctors and our pediatrician agreed that Fletcher would need a tracheostomy and ventilator support. The way that our insurance worked we couldn’t afford to have a ventilator in our home, so after the surgery and some recovery time at Baptist, Fletcher went to The Children's Center in Bethany. Craig and I toured the facility and found it to be a beautiful place where he would receive excellent care. Fletcher would have 24 hour medical care and be able to have physical, speech and occupational therapy several times a week, which was so important since he had been in and out of hospitals for nearly 9 months. His little body was weak and he’d get what he needed at The Children's Center. Our prayer was that his time there would rehabilitate him so he could get off the ventilator and come home for good. We talked at length with the girls and felt like they had a good understanding of what was going on with their sweet baby brother.

At that point, Fletcher’s heart was working properly. Of course, his lungs were still very sick and they were trying some new medication to help his lungs. He was starting to have really good days and smiling a lot. That smile of his made everything alright!:) He had 6 teeth, 4 on top and 2 on bottom! He weighed about 171/2 pounds! He was growing up on us! We knew Fletcher would spend his first Christmas and his first birthday in a facility of some kind and we asked if it was possible for him to stay at Baptist. We loved the nurses and doctors there and were honored for him to spend a few more 'first' with them! He turned 4, 7, 8, 9, & 11 months in that hospital, one of the respiratory therapist found his first tooth and he spent this first Thanksgiving in the PICU.

On December 16, 2005 Fletcher had surgery for a tracheostomy so he could handle being on a vent long term. We celebrated Christmas and his first birthday in the hospital. On January 9, 2006 Fletcher became a patient at TCC. He’s been hospitalized three times since and had numerous surgeries since that day. Days after his third birthday (2007) Fletcher was hospitalized, he was very sick. Everything that was going on with him was so complex and hard to understand and to explain. In November 2007 we found out that Fletcher had Hypophosphatemia Rickets, basically he had the bones of a 95 year old woman. He was very fragile and in critical condition. Fletcher was experiencing bone pain and very easily agitated. At that time we are trying to manage his pain and keep him comfortable without completely sedating him. He was having moments of smiling and giving us kisses. But his times of pain and agitation outweighed those good moments. They took x-rays of Fletcher's extremities. They showed us the films and what we saw was unbelievable. His little bones were bent and bowed and barely had calcium in them. His right arm had several old fractures, meaning his little arm had been broken several times and we didn't even know it! There were no new fractures on his arms and legs. They believed he had some compression fractures on his spine. They told us the problems with his electrolytes (calcium, phosphorus, sodium, potassium, etc.) were not fixable. We were told he was going to die. We had to make some decisions, we had to tell his sisters and grandparents that it was over and we started preparing ourselves for the very worst thing that could happen to any family. After 18 days in the PICU at Baptist Hospital they sent Fletcher back to TCC to die. We knew that only God knew the number of Fletcher's days and nothing that we could do would change His sovereignty. As soon as we got back to TCC things started to turn around. Fletcher was getting stronger with each day, he was happy and didn’t seem to have a care in the world. I believe we were watching a miracle in progress!

Can't believe it's been a month since my last post...

2009-07-09T18:33:00.007-05:00

So let's see we've had Father's Day, Summer Fun Day at TCC, Fourth of July and we've given Kayleigh's room a little make over. There's so much more that I can't even remember so pictures are going to have to do this time! The pictures are out of order because of blogger. I do not know why it won't let me move the pictures around, oh well. Please know we are all doing very well. Just enjoying summer and all that goes with it. We will leave in the morning to take Kayleigh to her grandparents in Mississippi for her annual summer time trip. Craig, Maddie and myself will return on Monday but Kayleigh will stay for three or four weeks.

Kayleigh's new room

Kayleigh and me painting

July 4th ~ Craig and Fletcher

July 4th ~ our annual Old Navy flag shirts picture at home

July 4th ~ Maddie and Fletcher at home

July 4th ~ Kayleigh and Fletcher (he's really into licking right now)

Fletcher and me that's a power chair he's using!

Kayleigh and Craig ~ going away party for some of our dear friends the Breedlove's

Father's Day ~ Megan, Rodney, (Craig's brother in law) Devon and EmiLee

Father's Day ~ Kristi, (Craig's sister) David (Craig's dad) and Craig

Father's Day ~ Kayleigh and Fletcher at TCC in his bed

Father's Day ~ Kayleigh, Maddie and Fletcher at TCC in his bed

Father's Day ~ Fletcher and me, like I said he's really into licking these days

Father's Day ~ Craig, David and Fletcher three generations

Father's Day ~ Maddie, Craig, Kayleigh and Fletcher

Maddie summer fun day at TCC

Fletcher and Dawn (my sister) and a group of her co-workers volunteering at TCC

Fletcher on our way to meet his new cardiologist

Dreamnight at the Zoo...

2009-06-07T22:24:00.007-05:00

Friday, Fletcher went to the zoo for the first time ever! The best part was that Craig, Kayleigh, Maddie and I went with him! Our whole family was at the zoo together. I never thought that would happen. The Oklahoma City Zoo held a private event called 'Dreamnight at the Zoo'. It was a complimentary evening for families with children with disabilities. Chickfila fed everyone, the zoo gave each child a stuffed monkey, there was an opportunity to have a free family photo made (the line was really long so we didn't participate in that), the rides were free as well. Fletcher LOVED walking around the zoo and he HATED stopping to look at the animals! :) He's such a toot sometimes. The fresh air did us all good. Being together doing something 'normal' was a blessing for us as a family. Thank you OKC Zoo for the gift you gave our family!We also saw a few unexpected people as well. The first person we saw was Fletcher's home health nurse Kristi. She was such a blessing to our family when we cared for Fletcher in our home that first year of his life. Then we saw one of our buddies that used to be at TCC Carson and his family. How fun was that? Lots!! Then there were at least three people that stopped us and said, 'is that Fletcher from TCC?' Ha! My Fletcher...such a popular little guy! Kind of hard to forget, right?! :)

Fletcher loves to ride in the car...
He's unhappy because his wheelchair is NOT moving...

Looking for the red panda...

Fletcher and his big sis Kayleigh...

Me, Fletcher and Maddie. He just pinched her so she's whining about it...

a little video...

So fun and so smart...

2009-06-03T21:07:00.005-05:00

This kid of mine is such a blessing to me. Fletcher is really making some nice progress in a lot of areas. Today his speech therapist, Heather told me that Fletcher's going to be wearing his speaking valve every time he's up in his wheelchair. He's using his voice so much now. Heather is working with Fletcher on saying 'hi' but it's coming out more like 'hi hi' and I love it!! Fletcher loves people and anytime someone walks into his unit he waves and blows kisses like crazy. How fun would it be if he was able to say 'hi' to everyone who walks in? Absolutely fabulous!! Maddie and I went to class with Fletcher today which was good and bad. Bad only because when he's with me while in his wheelchair he EXPECTS me to take him for a walk. So Maddie and I took him to class and he was really upset with me for not taking him for a walk. Maddie and I had to sit where he couldn't see us so he would cooperate with his teacher. The main reason we wanted to go with Fletcher to class today was because he was going to be writing a letter on the computer. I just had to see it with my own eyes. Well, it was so exciting. Technology today is really making it possible for people of all kinds to communicate. The computer was set up with two switches that would activate choices. One would give him choices and when he selected what he wanted he would push the other switch to make the choice. Fletcher choose to write a letter to his Aunt Dawny today. It's hard to explain so hopefully I caught enough of it on tape that you can see him in action. But, like I mentioned earlier he wasn't really happy with me to begin with.

Fun with sister...

2009-06-02T18:06:00.008-05:00

Since school is out Maddie has made a few trips to TCC with me. Fletcher has really enjoyed playing with his sissy! It does my heart good to see them love on each other!! Enjoy!

Wrapping things up...

2009-05-20T17:48:00.007-05:00

Okay so it's been awhile since I last updated! So this will be a post through pictures or it's just not going to get done otherwise. So, since Mother's Day Maddie has had an awards assembly where she received two awards one for telling time and another for knowing 200 sight words. Next on the picture agenda Maddie's ballet recital. It was really a precious recital and Maddie received an award for passing her Opal test meaning she will move up to the next level which is Sapphire. Maddie's dance studio is owned by a Christian family so each level is named after a precious gem stone. One of the main reasons we attend this studio is basically because of the atmosphere, it's positive, uplifting and centered around Jesus. Every costume the girls wear is very modest which is hard to find in the dance world. I refuse to have my daughter dressed inappropriately or suggestively, for pete sake! Moving along my Uncle Randy, Aunt Sandy and my cousin, Eric came to Oklahoma City to visit family. They always make a stop at TCC to see Fletcher and me. It's always such a joy to get to visit with them. Fletcher loves them and loves to play with them. They cater to his every whim just wanting to make him smile. What a blessing they are to me! Next stop the last day of school. Kayleigh was exempt from all of her finals so she went to school with Maddie and me! It was Super Kids Day and we also had a pizza party at lunch. Maddie loved having Kayleigh at school with her! So did I she was a huge help to me during the pizza party. During the Super Kids Day activities we came across a pitiful little girl who didn't have a partner so Kayleigh asked me if she could be this little girls partner. Kayleigh also made that girls day as well! I was really proud of Kayleigh for stepping up to the plate, seeing a need and meeting it! We've also been able to spend some time at the ballpark watching Craig and my nephew Kaleb play softball. That's always fun!! Next came my birthday. It's hard to believe I'm 44 years old! My family treated me like a queen like always! It was also my best friend Laura's birthday and Craig and I joined Laura and her family for a delicious dinner prepared by her daughters! How sweet is that? Now it's time to hear about Maddie's 7th birthday. She wanted a surprise party and I was able to pull it off. She was completely surprised as her friends jumped out from behind furniture and yelled, "SURPRISE!" Kayleigh was a tremendous help to me as well as her cousin Megan. We did an old school type of party. Meaning it was in our home and we played games outside like red light, green light, hot potato, egg races and a sack race. It was lots of fun. But the best part to the kids was singing along on the wii to Disney songs like Hannah Montana and AJ and Ali. Those kids were jamming! The day after Maddie's party we brought Fletcher home to help us celebrate May birthdays. My side of the family came over in the afternoon and Craig's side of the family hung out with us in the evening for pizza and birthday cake. We celebrated Memorial Day at Craig's parents along with their family friends the Eischens. They played basketball and we ate some really good food and talked and laughed til we cried! Last night I went to the wedding of a young lady who I taught when she was a child. WOW! That really makes me feel old! It's really neat to see those kids that I was privileged to teach and love on be the wonderful grown ups I knew and prayed they would be. Well, that's all I've got for now friends. I'll try to be better!

Maddie receiving her award from the principal, Ms. Miller

200 sight words award

Picture before she goes on stage

Maddie and mommy

Cousin Eric, Uncle Randy and Aunt Sandy with Fletcher

Super Kids day Maddie and Emma

Maddie and her wonderful teacher Mrs. Johnson on the last day of school

Kinnady, Kayleigh and Maddie

Kylie, Kaleb and Maddie at the ballpark

Me and my bff Laura celebrating our birthdays

Hannah and the rest of the girls lined up and ready for their turn at wii Sing it Disney

Getting ready to blow out the candles

Kayleigh and Megan, the best birthday party helpers, EVER!!

Fletcher!

The pinata!

Family birthday party part 1

May birthday girls me, Maddie and Aunt Kristi

Kayleigh doing what she does best

Laura, me, Amy, baby Maddox and Ashley at Christen's wedding

Mother's Day...

2009-05-11T20:37:00.006-05:00

In the wee hours of the morning Saturday, Fletcher started running a fever. His lungs were getting a little junkie so they did some lab work on him. His white blood count was fifteen and a about a week before that it was seven. So, needless to say he had an infection brewing. We were unable to bring him home for Mother's Day. They started an IV of Vancomycin and normal saline to assure the port would work. They were pretty sure Fletcher's port was infected, which of course would be a big problem. It would mean it would have to be removed...surgically. They kept Fletcher on the Vanco until they had all of his lab work back. It came back late this afternoon, all of the labs were negative. Praise the Lord! They stopped the Vanco this evening and will watch him closely for any fever.

Yesterday was a hard day not having Fletcher home with us. Though, I am grateful that I was able to see him and be at home with Craig and the girls. They treated me like a queen and gave me two of my favorite gifts...a Target gift card, a gift certificate for a mani/pedi and a dozen long stem red roses! Does my family know me or what?! Craig's parents and his sister's family came and had dinner with us. That always makes for a fun time. Craig made the BEST steaks for dinner. We ended our meal with my friend, Steph's banana pudding! YUM-O! All in all it was a great day with the exception of my Fletcher not being at home. I hope all you moms had a wonderful Mother's Day as well!

Always something new...

2009-05-08T21:05:00.004-05:00

Tonight TCC had a Parents Night, which was basically a nice dinner and a time of getting to know other parents who share the same struggle of having a child who is ill and can't live at home. It's nice to get to know people who are kind of in the same place as you. I was able to sit with my good friend Catherine, who like me, has two daughters and a son, Andrew, who is a patient at TCC. Catherine is a wonderful mom and friend. She's one of the few people I know that really is able to understand what life is like to not have your child at home. She gets me and I'm grateful for her friendship. And she'll be so embarrassed when she reads this! Sorry Catherine! :)

I was able to be with Fletcher a lot today and boy did he have a busy day! We started our day with a trip to the dentist, it took four grown ups to hold Fletcher down so they could clean his teeth! It was worth the struggle because his little chompers look great! His teeth had gotten really yucky and were a yellow orange color. I'm guessing that's from all the medication he takes. also this morning, some of our friends from church, Kayla and her cute daughter Emily came to visit Fletcher. Emily is two and a half and has a bit of a crush on Fletcher. Emily loves to watch Fletcher videos and talks about him a lot. It's pretty cute. Today Emily was playing hard to get and a little bit shy around Fletcher. We'll try again next week, hopefully she's feel more comfortable and we can get some pictures of the two of them. While Kayla and Emily were visiting Fletcher, he was working on power mobility in the gym. In other words, he was DRIVING a power chair! He still has quite a lot of work to do to be able to drive it but we're working on it. After that two of my friends from high school, Jean and Michelle came to meet Fletcher. He had a blast having two new people to do whatever his little heart desired! He played and laughed and flirted with these girls. I think everyone fell in love today! It means the world to me when people take the time to come to TCC and meet Fletcher and to see for themselves what a treasure he is.

These videos are from today, Fletcher learned how to blow his nose today!!! The second video is short but it's a tiny bit of Fletcher driving...

Yesterday when I blogged I didn't mention Kayleigh! I was so frustrated with posting pictures and video that when I finally got them on here I was done! Kayleigh Burns is doing well! She's getting ready to take her EOI (end of instruction) tests. They have to pass these test in order to get a drivers license and to graduate. So, if you think about it be praying for Kayleigh on Monday and Tuesday. She's had a tough time in Algebra and she's nervous about that test. Speaking of driver's license we've started the discussion of Kayleigh taking driving lessons this summer! Oh no! How can it be that she's about ready to drive?!!! Kayleigh's growing up on us! She's definitely a sweet, lovely young lady and we're very proud of her! Kayleigh can not wait for school to be over so she can sleep in, lay out and text her brains out! :) She is also looking forward to visiting her grandparents in Mississippi this summer as well.

We will be bringing Fletcher home for Mother's Day on Sunday so you're probably not going to be hearing from me again til next week. For all of you that are mothers have a blessed weekend!

Spring dancing....

2009-05-07T17:35:00.008-05:00

This morning TCC had a spring dance for all the little ones. Fletcher had fun dancing to the Hokey Pokey, Wheels on the Bus, Row, Row, Row Your Boat and Itsy Bitsy Spider! He takes his dancing pretty seriously as you'll see in the videos. It was quite a production that the staff put on for the kids. This afternoon they had a prom for the older kids along with a prom king and queen! I bet it was a lot of fun!

My cute date to the dance

We had to stop for the paparazzi...

The weather has been crazy around here. Like someone traded May for October it's been chilly and rainy! The other day the sun made a brief appearance so Fletcher and I went for a nice long walk. Now as soon as I walk into his unit he holds his hand out to his wheelchair and he wants to go for a walk post haste! He's such a demanding little toot! But he usually gets what he wants that way!

Just a walking...

In other news Maddie is working pretty hard on her spring recital. The recital is next Saturday night. She's really excited and is doing very well. Maddie recently passed the Opal test at her dance studio which means she'll move up to the next level! Tonight she finished up Girl Scouts until September. In October Maddie will bridge over into Brownies. She's got most of the badges she needs to move on. We hold our meeting at church and tonight we had a little garden party and the girls cleaned out a huge flower bed and planted flowers for the congregation.

Blogger is doing something weird and not letting me move pictures around so here's a couple of videos from Fletcher's dance.

If you listen very closely...

2009-04-27T12:55:00.003-05:00

...Fletcher has something very important to say! Today for the first time ever Fletcher Burns verbalized on command while working with his speech therapist!!! I was able to get it on video you do have to listen very closely but you'll hear him say 'uh huh'. What strides this boy is making!! He's sitting up, rolling over and now using his voice! The Lord is so good to us and I'm so amazed at His goodness to our family, especially Fletcher! Hope you enjoy the videos, in case you're wondering what he's playing with it's his speaking valve.

Three days...

2009-04-21T08:50:00.004-05:00

This morning Fletcher started the first of three days of Pamidronate. I called to check on him at about 8:00 and he was kind of having a tough time. Not bad, but tough. The nurse gave him some motrin and he was on his way to sleepy town, so hopefully he'll rest this morning and feel much better. Would you all be praying for him for the next several days? They say that the Pamidronate is painful but nothing a little tylenol and motrin can't help. But still we don't want our boy to suffer, right?! :) I'd appreciate any and all prayers! You all are the best! What would I do without my prayer warriors? Leaving you with a video from last week. Man, I love this kid! :)

Roll over, roll over...

2009-04-19T19:29:00.004-05:00

Today Fletcher Burns rolled from his tummy to his back!!! Watch this...

Surgery update and Easter...

2009-04-13T17:28:00.009-05:00

Late Thursday afternoon I received a phone call from TCC that Fletcher was scheduled for surgery the next morning to remove and replace the port. So, Friday morning as we were loading up Fletcher, much to our surprise, we found out the surgery would be at Baptist Hospital! As you well know that's our hospital of choice and there wouldn't be any residents poking on our boy. We were elated! As far as we can tell the surgery was successful. They put another port in him which was exactly what the Nurse Practitioner DIDN'T want. Tomorrow will be the true test. Fletcher has blood work on Tuesdays so they will use the port to get the blood needed instead of sticking him. If it draws blood then were good. If not, I don't know what we'll do. Anyway, Fletcher was quite a trooper as always! He loved riding in the van and before surgery some of our sweet friends from the PICU came to visit him. He really showed off for those girls. That's one thing about Fletcher, he LOVES pretty girls! He was quite cranky after we got back to TCC but who can blame him? Not me!

On our way to the hospital

Amy and Kristin our friends from upstairs

Tired and cranky

We started our Easter activities on Saturday afternoon by coloring a couple a dozen eggs. The Easter Bunny came and hid the eggs while we slept and Maddie woke up early to find them. We went to church where we had yet another egg hunt. The youth hid the eggs in the sanctuary because it rained all day on Sunday. After church we headed up to TCC to get our boy! He was super excited to see his sisters. It was so cute watching him wave and blow them kisses! Craig and I loaded him up in the van and we went home to get ready for all of our company! Craig's family came over to help us celebrate Easter. I also invited my family and quite a few of them came. We were happy to see my niece Samantha and her son Story and my brother Brett, they came in from Houston. My sister Kim and her kids Kaleb and Kylie. My mom, another niece Chevaun and her four kiddos and husband came too. A lot more people were invited but couldn't make it. Which was bittersweet, since it rained all day Sunday we were stuck inside and my little grey house will only hold so many people. We weren't able to have an egg hunt either. And I missed my other sisters and their families! There's always next year, right?

Craig and the girls coloring eggs

Maddie finding the eggs EB hid while she slept ;)

Here we are at church minus Fletcher

Silly Maddie waiting for the church egg hunt to begin

All three of our children in their Easter duds

One of the many attempts at all five of us

Maddie and her cousin Story they hit it off well

a few of the Milgrim grandkids

Postponed...

2009-04-08T15:09:00.002-05:00

Fletcher's surgery scheduled for tomorrow has been postponed. We don't have a new date as of yet. The Nurse Practitioner spoke with the surgeon about the placement of the new line and he has decided that a Radiology Interventionist (RI) needs to be involved and there isn't one available tomorrow. One of the first Hickman Broviacs Fletcher had was done by an RI and it lasted for at least a year and a half. I've mentioned using an RI many times but have been told they don't do surgery. Hmmmm....sometimes mommies know stuff, just saying. So, I'll let you know when I know. Thanks!

To port or not to port...

2009-04-07T22:10:00.002-05:00

...that is the question. Today we had our quarterly Patient Care Conference (PCC) for Fletcher. He's doing so well in so many areas of his therapies and education. He's gaining strength and wisdom! What a strong and smart boy we have. At the end of our conference this afternoon I asked if we should try to access the port and it was their professional opinion to leave it alone. This is his second unsuccessful port so they're going to ask the surgeon to put in a Hickman Broviac, which is what Fletcher has had the most success with. Where they'll place it? I do not know! We asked them to communicate with the surgeons BEFORE we get there. So, we'll see. Thursday morning we'll leave TCC at 5:30 am. I'm guessing surgery will be around 7:45 am. Please be praying for Fletcher's safety, the success of the surgery. This will be the fourth surgery he's had since late December. Thanks so much and I'll keep you posted.

UGH!

2009-04-02T21:45:00.003-05:00

Today was the first day to access Fletcher's port. And guess what? It doesn't work!!!!!! He is scheduled to have yet another surgery next Thursday. Seriously? I can't believe we can't get this thing together!!!!! However, one of my dear friends told me today that she's praying that this port will work and that it won't have to be replaced. So, tonight our little family decided to make that our prayer as well. I'm going to ask them to try again. If you're willing would you agree with us in prayer that this port will work? Thanks! So here's a fun little video from yesterday... In the last six months Fletcher has mastered the whole 'sticking his tongue out' thing. So cute!

So sweet...

2009-03-29T21:46:00.006-05:00

Yesterday Maddie 'snuck' this note onto the counter in our master bathroom...

if you can't read it it says...

My Prayer

Dear lord I hope

you can make

fletcher feel

better and he can

come home with

his family soon

because I feel bad for

him and I love him so much that I

miss him. Amen

from: opps cant tell

I'm not sure why Maddie wanted to be anonymous but she did. Sometimes I don't realize how Fletcher not being at home affects her, but obviously it does. The unit has been closed since January so she hasn't seen him for awhile.

Here's a fun little video of my time with Fletcher late this afternoon. I love this kid!

Port update...

2009-03-27T13:32:00.006-05:00

Well, Fletcher's surgery went well yesterday. That kid is so amazing to me! He's such a trooper and oh so strong! I hit the ground running at 4:30 am and was at TCC by 5:30 am. Fletcher woke up in a great mood and was excited to go on an 'adventure' until we walked into Outpatient Services! Man, was he mad when he realized where he was! The surgery was scheduled for 7:45 and they were on time! The surgeon came out after they took the existing port out and told us it wasn't defective but that it had some fibrous tissue like scar tissue around it and that's why it wasn't working. Dr. Tuggle then told us Fletcher's chest needed a break and he put the port in Fletcher's groin on the left side. OUCH! We are praying this one will last for a long time. He's doing really well today a little cranky and I'm sure he's probably very sore. Thank you so much for for being so diligent in your prayers for him and us! Yesterday was a tough day for me emotionally. I don't think I'll ever get used to them wheeling him away to surgery but I don't usually cry and yesterday I cried. I think as he's getting older he's realizing what's going on and it scares him. Yesterday was really weird they didn't have enough beds so we took him back to the surgery holding area in his wheelchair. When it was time for him to go into the OR they kept him in his wheelchair he held out his hand for me to hold it so I did. I didn't realize he thought I was going with him so I had to let go of his little hand and let complete strangers take him away. Heart wrenching! It makes me tear up now as I write this! It's never going to get easier so I'm hoping for less frequent. Again thank you for being the Body of Christ to our family, as Fletcher was being whisked away into surgery I wasn't able to pray right before he went in and I immediately thought about all of you and I knew you all were praying. I had of course, been praying for Fletcher, he just didn't get to hear me pray for him. I think that's one reason why I was so emotional!

so cute!!

We're supposed to have some snow tonight so today I've been busy going to the grocery store and cleaning up the garage so I can park my car in there! I did a little home improvement project on spring break...I painted my fireplace. It looks absolutely amazing. I'm so happy with how it turned out.

before

after

Speaking of spring break, Kayleigh went to Mississippi last week with her grandparents. She had a great time visiting family and hanging out with old friends. We missed her! It's quiet around here without her! Kayleigh leaves this afternoon for Tulsa. She's going to Acquire the Fire which is a big youth rally type of deal. I'm praying for safe travel and for her to have a life changing time, for her to know Jesus in a more intimate way. I'm sure she'll have a great time she's very excited.

Kayleigh waiting in the cold to go to ATF

Maddie is doing great, as well. She's still loving first grade. This week she and a few other kids got to go to the library and check out CHAPTER books. Very exciting! She'll take her first AR test next week. Maddie is also getting ready to bridge over into Brownies. Last night at Girl Scouts the first grade Daisies were able to hang out with the Brownies. She loved it! Now if we could just get her to go by herself and let mommy have a break that would be nice. Her troop ended up selling 8,300 boxes of GS cookies! And we have less than 30 girls! So proud of all of them!

Craig is doing well. He's fixing to do a big honey-do project for me. We are in desperate need of a new stove. Ours is original to the house. It's going to be quite a project because this stove is a 'drop in' stove and it's smaller than a normal stove. So he's going to have to cut the counter top to make room for the new one. That's a pretty scary task so he's going to have one of his buddies help him. I'll take before and after pictures when we're all done.

Well, that's it for now. Hope you all have a great weekend! Stay safe!

Surgery tomorrow...

2009-03-25T21:15:00.005-05:00

Thursday morning at 7:45 Fletcher will have yet another surgery for his port. As I'm sure you may recall this will be the third surgery of this type in about three months! They will surgically remove the existing port, I would have said 'old' port, but it's far from old! And they'll replace it with whatever will go in, another port or another central line. I'm still hoping for a port. I love that it's under his skin and there is no tubing hanging off of his body. I have requested that this time no residents touch my sweet Fletcher, they can watch but I do not want them cutting on him. Please pray with me that they will honor my request and treat Fletcher the way they would treat their own child if they were in this same situation. I always get the feeling that they think of Fletcher as some kid at TCC that no one cares about, that doesn't mean that's how they actually feel that's just my take on the situation. Anyhoo, Fletcher and I will leave TCC at 5:45 AM!!! Man, that's early. I need to get off this computer and get to bed. I do, however, want to leave you with a little video of Fletcher and my empty Starbuck's cup. You'll see just how smart this little guy is! I'll update tomorrow night with how things went. Thanks so much!

Ultrasound results...

2009-03-18T17:20:00.005-05:00

Fletcher and I went to Baptist Hospital this morning for his renal ultrasound. Things went well and we were able to go up to the PICU and visit our friends there. It's always great to visit and NOT have stay there! :) I got a call from TCC this afternoon and the US showed no blockages or stones of any kind. It did show that his kidneys are enlarged for his size and age. What this means I'm not sure. They are making an appointment for Fletcher with the nephrologist over at Children's Hospital, hopefully he can give some direction on what to do with our little guy. That's all I know for now. Thanks for your prayers!

waiting for our friend Mr. Joel to pick us up today...

Update...

2009-03-16T23:42:00.003-05:00

Okay here's the deal...Fletcher will have a renal ultrasound at Baptist Hospital on Wednesday morning. One thing they will be looking for is kidney stones. His lab work came back normal today except the creatitine was still elevated. Fletcher has been in a good mood for the most part. His heart rate was elevated a little this evening and he was fussy so they gave him some tylenol. I forgot to mention in my last post that Fletcher's port will not draw blood or flush. This is bad news because it will have to be surgically removed and replaced. The surgery is scheduled for next Thursday. Boy when it rains it pours over here at Casa Burns! I'll keep you posted after the ultrasound. Thank you so much for keeping the boy in your prayers!

Prayer Request...

2009-03-15T22:40:00.004-05:00

This morning Fletcher had an episode where his heart rate dropped into the 30's. They did blood work and found that his phosphorus and potassium are too high. They did another lab called a BMP (Basic Metabolic Panel) to check his protein, calcium, and creatinine I do not know the results of this test. They will do another BMP in the morning. They put a foley catheter in him this evening and will monitor his urine for 24 hours. They also want him to have a renal ultrasound as soon as possible. They will call in the morning an try to get the ultrasound scheduled. So, all of this to say please pray for our little guy and that we'll be able to get that ultrasound very soon! The last time I checked on him (about 10:30p) he was sleeping. Fletcher was in a surprisingly good mood when Craig and I both saw him today. He didn't seem to be experiencing any pain and his heart rate and oxygen saturation were normal. When I arrived this afternoon the crash cart was next to his bed and he was hooked up to a heart monitor. Let me tell you, I'm thankful for the crash cart but it still makes my heart worry every time I see it! Well, that's it for now. I'll keep you posted and as always thank you for praying for our sweet boy!

This picture was taken last Thursday. I just wanted to leave you with a cute picture of a cute boy!

To Chew or Not to Chew...

2009-03-04T17:19:00.006-06:00

February 16th? I can't believe it's been that long since I last updated. Sorry, friends! Things are busy around Casa Burns and we're just waiting for spring break so we can take a breath and relax.

Let's start at the top...last week Craig and I celebrated our 8th year of marriage. I was surprised that afternoon with a delivery of 8 gorgeous red roses. Craig also took me to dinner at Outback and we enjoyed a wonderful meal and great conversation as we reminisced over the last eight years. Boy have we had an interesting go at it!

Kayleigh recently enrolled in 10th grade! WOW! My baby's growing up! She's also very excited and ready for spring break. Kayleigh's grandparents are planning to come to OKC, spend the night and then head back to Mississippi with Kayleigh in tow. She is so excited to see her grandparents, aunt, uncle and all her childhood friends. It should be a great time for all involved.

Maddie is staying busy as well. She continues to love ballet and Girl Scouts and just finished selling 266 boxes of Girl Scout cookies! Man am I glad that's over! Maddie is also doing very well in school. We had her parent teacher conference last week and she's already ready for 2nd grade! And...by the end of 2nd grade there are 300 sight words she'll have to know and as of last week she knows 297 of them! Can you believe it? We are so proud of our little reader. It was such an encouraging conference. Mrs. Johnson said that Maddie isn't bored and that she's an appropriate 1st grader. That's great news I would hate for her to be bored at school she could probably stir up all kinds of trouble with too much time on her hands!

Fletcher is doing great and seems to be feeling well. Now that doesn't he isn't bored! Because that little toot is causing some problems for himself. Fletcher has a new tendency to chew on things when someone isn't paying attention to him. This seems to happen mostly on second shift (3p-11p) He's been chewing on his tubing and vent circuits. You see, if he chews just long enough and in the right spot his vent will alarm and someone will come to the rescue ie pay attention to him. Do you get where I'm going with this? He's intentionally making that alarm sound! The nurse practitioner had to have a serious talk with me last week informing me that Fletcher is a danger to himself! Think about it, if they don't get to him in time just about anything could happen. So, they're all working together to come up with some practical solutions such as sitting him up in his wheelchair, therapy schedule changes and a scheduled nap time each day. It seems to be working. Although now Fletcher is chewing on his sleeves and his loveys (burp cloths). So, we've started dressing him in short sleeves. I don't know what we'll do about the lovey. He sleeps with them and I don't know if emotionally I'm ready for him to give up the lovey! I took pictures of one of his loveys and a pajama top.

Well, I'm going to close for now we need to get to church. I just wanted to do a quick update so you all would know we hadn't fallen off the planet! We're all doing well just super busy! Have a great week!

Much love...

2009-02-16T09:09:00.006-06:00

Well, we had a wonderful Valentine's Day with Fletcher here at home with us. I made beef enchiladas and salsa. I also made a strawberry cake with cream cheese frosting! Yum-o! We just hung out and played with Fletcher most of the day. Craig's parents came over and joined us for dinner. It was a great day! Fletcher sat up in his high chair for quite a bit. At the end of the day we were practicing sitting up. Fletcher sat up unassisted for about 20 seconds! It was so amazing! We were able to catch it on video!!!

Three of my favorite Valentines!

Listening to sissy's ipod

Craig bought all three of his girls candy necklaces!

Our Valentine cake

Sitting up!!

That ain't snow...

2009-02-10T16:19:00.005-06:00

We're having some spring weather here in OKC during February! We've had several tornadoes today. And it's not over yet! The girls were on lock down and are now home safe and sound. They also put TCC on lock down and Fletcher is safe as well, bored but safe!

Would you look at him...

2009-02-09T18:25:00.005-06:00

There's nothing Fletcher likes better right now, than the stacking balls he got for Christmas. They are pretty cool and you can do so much with them. We always start by stacking them up and Fletcher takes them apart one by one. Then we usually help him snap them in to a ball. Well, Fletcher Burns is now able to line them up and snap them together by himself! It's such a blessing to watch him work, he gets frustrated easily but when he gets them together he just smiles! I've been trying to get it on video for about a week and on Sunday one of Fletcher's favorite RT's was able to capture it on video! We also put his bed in a sitting position and hooked up his DVD player he seems to really like Sesame Street. Hope you all enjoy these little videos.

This is how it starts...

Still working...

A sweet moment...

Surgery update and a bit more...

2009-02-06T17:35:00.003-06:00

Fletcher's surgery went well and they were able to place a port in him. Praise the Lord for that! One thing I dislike about Children's Hospital is that it is a teaching hospital. I realize these people have to learn somehow but seriously? Fletcher was basically a pin cushion for about three residents on Wednesday! Apparently he had two surgical residents on either side of him poking and prodding on him I'm guessing to see who would find the best vein. Our recovery nurse wasn't the brightest star in the sky either. Fletcher came out of surgery a little loopy and it was quite humorous. But once he noticed he had an IV in his hand he got mad and started flailing his arm up and down and blood was flying all over his bed. He also had and opening below his shoulder where one of the residents was unsuccessful in putting his line in. It started to bleed like crazy as well. She obviously didn't know what to do. So another nurse came over to help. They had to have permission to take the IV out so that took some time. Then about 10 or 15 minutes later his incision where the port is started bleeding to the point where the surgeon was called and had to come and help stop the bleeding. Fletcher is anemic so all the blood was freaking me out! I just kept saying, 'he's anemic, he's anemic, he's anemic!' Which didn't seem to bother anyone. Fletcher is allergic to Tegaderm, which is a clear bandage basically. Before he went into surgery they asked me about the Tegaderm and made sure that was the only thing we knew of that he was a allergic to. Well, sure enough Fletcher came out of surgery with Tegaderm covering all three incisions! So it was a day of mishaps and we couldn't wait to get back to TCC.

Maddie has had strep all week and finally went back to school today. Our pediatrician is concerned about the frequency that Maddie gets strep so we have an appointment with an ENT on February 23rd. I don't know what we'll do if he wants to take her tonsils out. We're very leery about the whole tonsil thing. So, we'll just wait and see what happens and worry about that on another day! Maddie also got her first professional haircut! I've always cut her hair but she has so much hair and it's really hard to cut. Maddie loves it and it looks so cute, but she looks like a 3rd grader! I really don't like that my babies are growing up on me it's hard on their mommy!

before

after

Flirting and stuff...

2009-02-02T17:56:00.011-06:00

It's been a busy few weeks! Last week we had a little ice/sleet storm and the girls were out of school for three days. The girls were quite bored and since they were out of school and so were their cousins they were able to spend the night with them during the middle of the week. It was a nice break from staying inside our little grey house! But by Thursday Kayleigh was ready to go back to school. Not because she wanted to do some learning, mind you she missed all of her friends! :) Kayleigh received the book Twilight for Christmas. She started reading it on Christmas day and is currently reading the fourth and last book in the series. Craig is quite thrilled to see his daughter READING! Kayleigh really isn't a fan of reading but she has so enjoyed this series.

Kayleigh the reader

A few weeks ago Maddie's school had a dress up as your favorite storybook character. So she wore the Little Red Riding Hood costume Kayleigh wore when she was about the same age. I've been looking for the pictures I took of Kayleigh when she wore it but I can't find them! :( Maddie also received an award for knowing all of her vowel sounds. Please allow me to brag on Maddie for just a moment. A few weeks ago I was volunteering in Maddie's classroom. During reading time Mrs. Johnson spent a little extra time with Maddie. Later Mrs. Johnson told me that by the end of 1st grade the children should be on level 16 and currently Maddie is at a level 30! WOW! Now Maddie, she's a girl that loves to read! We're hoping she'll continue on that path! Way to go, sis!

Maddie Riding Hood

Fletcher is doing really well! He's been working on a computer with his speech therapist, Heather quite a bit lately. He really seems to like it. There are still a few challenges they're trying to overcome equipment wise. Fletcher's little arms are so short maneuvering the computer has been difficult. We're trying to get the screen close enough that he can touch it. We've tried him in his wheelchair and it just doesn't quite work. Heather has been sitting him in her lap but that still isn't giving him the independence he needs. But, if I know Heather, she's going to find a way to accommodate my sweet boy!

Fletcher will be having surgery on Wednesday. The tubing on his central line has broken in two places. This line has only been in place since November 26th! That line should have lasted at least a year. The tubing, which is on the outside of his body can't be repaired so he has to have it surgically removed and replaced! We're hoping that they can put a port in him instead of central line. But we've been down this road before and have been told he has too much scar tissue. It would be such a blessing if he could have a port. A port would be under his skin, you wouldn't be able to see it. I would love for him to have one less tube hanging off of his little body. Would you guys please pray for him on Wednesday? Thanks!

Heather and Fletcher working on the computer

During the ice/sleet storm I was stuck in the house and scared to take the risk to drive on the icy roads. The first day of the storm Craig came home and took me to TCC so I could see Fletcher. It's not very often Craig and I are there together. Actually that day one of the nurses came out of the unit she was working in just because she saw us in the hall. She teased us saying she didn't think she'd ever seen us together! Fletcher was in great mood and he enjoyed having both of his parents to play with. Craig and I do things so differently when we're with him. I basically hold him and read 12 or 13 books to him in one sitting. I have also enjoyed holding him in his bed in an upright position and letting him see what's happening. Craig plays with him the whole time and always wants to teach Fletcher something new. Fletcher doesn't let Craig hold him for very long periods. But when he does Fletcher loves for Craig to 'tickle' his back. Craig is the only one who can get Fletcher in the position he's in, in the picture below.

Sitting up with mommy!

Tickle time with daddy

Tonight we ended our day as family playing UNO. It was Maddie's first time to play and she caught on quickly. We all had fun laughing and just being together tonight. We need to make that happen more often it was good for all four of us!

This video is from today. He's such a flirt these days! Enjoy!

One hundred boxes and la la la...

2009-01-20T15:46:00.007-06:00

Well, it's time for Girl Scout cookies! And our Daisy, Maddie is working on selling her first 100 boxes. So far she's sold 80 boxes and that's since Saturday! She's quite a saleswoman, too! Since she was out of school Monday I took her to TCC , made Fletcher an honorary Girl Scout and loaded the cookies up on his wheelchair. We strolled the halls and sure enough we were able to sell quite a few boxes and we're not done yet! We haven't even hit up the grandparents or neighbors! :) We committed to selling 200 boxes and I think that's going to be a breeze. Surely we'll end up selling more than that. So, if you need some cookies let us know...

First 100 boxes

The other day I was reading "Moo Baa and La la la" to Fletcher, one of his current favorites and I asked him to say la la la and he did it!!! Now, he didn't make any noise but he moved his jaw and tongue appropriately! It was so cute I had to get it on video! I love this boy! He is such a blessing and so much fun to be around! Enjoy...

Three days...

2009-01-16T18:18:00.008-06:00

Tuesday Fletcher began his second round of Pamidronate. This time they'll administer it for three days in a row, twelve hours each day. You might remember last time they were very cautious only giving it to him once a week for three weeks. Fletcher did great! He has been in the best mood and we've had lots of fun the last few days. Praise the Lord for that! They gave him Tylenol every four hours to head off any pain that he might experience and I think it helped a lot! The next thing they'll do is a Dexascan, which is basically a full body x-ray that measures bone density. So we'll know if the Pamidronate is working. I really believe it is. Fletcher has gotten so strong in the last six months. He's rolling from his back to his tummy and back to his back. You should see his face when he gets on his tummy. You can tell he knows he's accomplished something pretty neat! It's a whole new world on his tummy. And I believe with all my heart that 2009 is the year Fletcher Samuel Burns is going to sit up without assistance! Do you know how much freedom that would give him? To see everything that's going on in his unit would be such a blessing for him. I'm praying each day that he'll be able to sit up on his own. The Lord has answered my prayers that Fletcher's arms, legs, back and neck would be strengthened. He's making so much progress! Well, it's late. I just wanted to give you all a little update on our boy. Here's a little video from the other day that I think is kind of fun. Enjoy!

Happy Birthday, Kayleigh...

2009-01-07T18:48:00.005-06:00

Look who's 15! My sweet Kayleigh turned 15 yesterday! She's growing up too fast! Maddie and I baked and decorated a cake for her. I made whatever she wanted for dinner and she chose potato soup. I also made tuna patties and peas to go with it. Kayleigh just ate the soup, two servings actually! Kayleigh is my picky eater but when she likes something she really likes it! And it usually has potatoes or pasta or chicken! Kayleigh wants to go to the movies with a few friends as her party. It seems strange not to be planning a party for her but she is 15 and she knows what she wants to do. Oh well, there's always next year...sweet 16!! Surely I get to plan a party for that!

The birthday girl

Sisters

She couldn't believe she got them all in one blow!

The cake..cute, huh?

So loved...

2009-01-04T19:34:00.008-06:00

Yesterday we brought Fletcher home for his birthday celebration. He's never celebrated his birthday in our home. What a wonderful day! We had over 60 people come join us in celebrating the gift of Fletcher! It was amazing! We had friends from Tulsa, family from Houston and a friend from Alaska. Pretty cool, huh? This year as I thought about a theme for Fletcher's birthday I asked myself, 'what does Fletcher love?' Well he loves a lot of things but he has a passion for balls! Foot balls, base balls, soccer balls any thing he can throw is a jackpot for him! So, I decided on a ball theme and it turned out great! A friend of mine made this incredible cake that had a foot ball, base ball, soccer ball and basket ball on it. It was so cute! He loved opening packages.

When Fletcher was home on Christmas I tried to get him to sit in his high chair. Well, that went over like lead balloon. I thought he'd enjoy sitting up and seeing everything around him. He hated that highchair and did not sit in it all day. I was determined on his birthday not to let him lay in bed all day. So, I put him in the highchair and he fussed at first but somehow he got distracted and I don't think he remembered he hated the chair! He stayed in it for probably 2 hours! Our friends were able to see him action and he could see everything and everybody!

We want to thank all you who came to the party and those of you who wanted to but couldn't. Our lives are forever changed because of Fletcher, as I know your lives are also. Thank you for being the body of Christ to our family these past 4 years. Though we've had our ups and downs the Lord has shown Himself to us so many times and in so many ways and through so many of you! Thank you, thank you, thank you for loving my family the way you do! Be blessed, be a blessing!

We're having a party...

2009-01-02T17:28:00.002-06:00