Hope TV...

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

Okay so this is May...

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...

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...

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...

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....

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...

Hope you have sound because this is hilarious...

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!

Look what the Lord can do...

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!

Fletcher does the classics...

Fletcher's been in rare form lately...

Will you look at that...

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...

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...

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...

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!

Labor Day...

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....

Just for fun...

Fletcher loves brushing his teeth theses days....

Lovin' on each other...

Going through Mommy's purse...

Dreamnight at the Zoo...

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...

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...

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!

Always something new...

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!