NeeNee's Blog

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

2009-07-09T18:33:00.006-05:00

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...

2009-02-16T09:09:00.005-06:00

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...