Sunday, November 6, 2011

Catching up...

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

                                                     A nice walk on a Sunday afternoon!

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

                                                     Maddie at her first orchestra concert...

                                               Maddie teaching daddy how to play the viola!

                                                                  Court Jester #6

                                                 Merlin,(Jackson) and Court Jester #6

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

                                                     Heather talked him into the ring toss!

                                                      Ring toss with Tommy and Mr. Danny!

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

                                                        Swimming with Miss Melanie!

                                                             Sprinting and being silly!

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

Wednesday, October 19, 2011

Mexico! Mexico! Mexico!

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

 The view from our balcony...
 In front of the resort...
 Anniversary dinner on the beach...
Yummy anniversary cake...
 Craig at Xel-Ha...
The Mayan ruins in Tulum...
Craig's birthday dinner at a lovely Asian restaurant...

Monday, October 17, 2011

Good Intentions...

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


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

First day of 12th grade...

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


First day of 4th grade...

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

First day of kindergarten...

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


Rest in peace, Sharla Ann...

Tuesday, July 26, 2011

Standstill...

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



Tough day at summer school...



Fletcher and Mrs. Darcey during PT...


Fletcher and me on the swing...

Sometimes PT is hard work...


So silly...


Summer school and sidewalk chalk...


The alphabet book!




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

Saturday, July 9, 2011

Baby steps...

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? :)

Thursday, July 7, 2011

Summer school and stuff...

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...

Wednesday, June 29, 2011

Getting ready...

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...

Saturday, June 25, 2011

Slow and steady...

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"

Wednesday, June 22, 2011

Hanging with the big boys...

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!

Tuesday, June 21, 2011

The Long Journey Home...

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...