Thursday, July 31, 2008

Quickly...

I wanted to let you all know that Fletcher's second day wasn't to bad. He was a little grumpy but not too bad. They were worried mostly about his electrolytes getting to low and having to replace them. Well, in Fletcher fashion his electrolytes have been to high so they are skipping doses. They are monitoring him closely and doing blood work every 12 hours. Yesterday his magnesium, potassium, and phosphorus were too high. So they skipped a few doses. Today only his magnesium was too high. He was pretty tired when I left this afternoon. I really had a hard time leaving him today and I was a little weepy. I do not like being away from him for any length of time. But I do need a break and our trip to Houston will be so much fun. I'd appreciate your prayers for safe travel, Fletcher to not be lonely and for Craig to enjoy some quiet time. And if any of you locals wanna visit Fletcher while I'm away that would be fabulous! Thanks! I'll post when we get back!

Wednesday, July 30, 2008

A little bit rough...

Well, Fletcher finished his first Pamidronate treatment yesterday. And I'll be honest with you it was pretty rough. Of course there is no way of telling if he was in pain or just extremely mad! I'm sure it was a mixture of both. His whole routine was out of whack. I usually spend my time with him taking him for a walk then to school and after school we walk again. Then back to the unit and I hold him and we rock and read or sing. We didn't get to do any of those things yesterday! In one of Fletcher's labs yesterday morning his blood sugar was low so they decided to do a 12 hour continuous feeding and he had the IV Pamidronate going so I could not hold him. Which was torture for both of us! He was such a crabby appleton! Around 4pm I asked if I could hold him and they maneuvered all the tubes and I was finally able to get my hands on that boy! That didn't last long I think he was just too uncomfortable. After about 30 minutes I laid him down. He was mad when I held him and mad when I put him down. Bless his little heart! This video will show you his little mood swings...

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I am not able to be with him this morning because we are having carpet RE-installed (long story I might blog about later). Supposedly the second day after the treatment is the worst. I have called to check on him and they feel like he was doing well. I'm hoping he will feel well enough to go to school today. Thank you so much for praying and I ask that you would continue to do so. Fletcher's next treatment will be next Wednesday.

The girls and I will be heading to Houston on Friday morning to spend a few days with Craig's Aunt Susie. The girls are really looking forward to this trip. I am as well but I'm always apprehensive to leave Fletcher for any amount of time. Craig will stay here so at least he'll have his daddy at night and his teachers and the medical staff will keep him busy during the day. I will keep you posted on the Burns family happenings!

Tuesday, July 29, 2008

He's on his way...

Fletcher started the Pamidronate at 6 this morning. So far everything is going well, he seems to be tolerating it nicely. The Pamidronate will run for 12 hours today. Please being praying for him. I'm mostly concerned about his pain level. I know TCC will do everything possible to keep him comfortable. But the thought of him hurting is very hard for me, especially since we have chosen this for him. I will be with him all day so I will not post again until after the treatment is over. I am putting some pictures up that Maddie took of him the other day.


He's not real happy to be stopping his walk so his sister can take pictures of him!

"Keep moving, mom!"

Sunday, July 27, 2008

Learning our numbers...

Fletcher has been working on learning his numbers. He is, of course doing so well and I'm pretty sure he's a genius! No bias from me!:) His teachers hold up the number and ask him to chose the right one. On this particular day he was working on one, two and three. I think it's a fun video and hope that you'll enjoy it!



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On Tuesday Fletcher will start the Padmidronate infusion therapy. They will do blood work on Monday and if everything looks good especially his electrolytes they will be ready to start bright and early on Tuesday. Since this will be his first attempt with Padmidronate they will do blood work every two hours and if I understand it correctly the infusion will be over a twelve hour period once a week for three weeks. Dr. Brannon is being very cautious, this type of therapy is usually done in three days over a six hour period each day repeating it every three months until they have the desired results. Dr. Brannon is sure Fletcher is already experiencing bone pain and that is one of the side effects of Padmidronate they will give him tylenol before they start and as needed during the next few days. We're hoping that the Padmidronate will eventually decrease the bone pain and give him back some of the bone density he has lost. Would you all please be praying for Fletcher these next few day? It's hard to watch him be uncomfortable but it's for his best. Craig and I have a complete peace about going through with this therapy. I will keep you posted on how it's going.


Yesterday Maddie and I went to a baby shower for my niece, Amber. She is having baby number three and it's a girl. Her name will be Kate Olivia and she will have two great big brothers to help care for her. We're very excited for Amber and Matt and can't wait to meet that sweet baby!


Kim, Mom, Paula, Amber, me, Dawn, Maddie and Kylie

Amber and Dawn

Kylie and Kim

Me and Maddie

Tuesday, July 22, 2008

We're back...

We made it home safely from Mississippi on Sunday evening. We're so glad to have our Kayleigh back home with us. She was getting a little home sick as well! She had a blast in NYC and spending lots of time with her Mississippi friends! We enjoyed some great food, wonderful southern hospitality and fun conversations. Maddie was able to swim at Monna and Pops neighborhood pool. She's turned into quite the little fish. I donned a swimming suit for the first time since I was pregnant with Fletcher. And trust me it wasn't any prettier now than it was when I was pregnant! I HATE swimming suits, but one of my friends said something to me the other day that stuck with me. She said, "you know Denise, you're going to miss out on a lot of things in your kids lives if you continue to sit on the sidelines and just watch." So there you have it I put on a swimming suit and played in the pool with my girls and my husband and it was a lot of fun! Late Saturday afternoon Maddie started feeling bad and then started throwing up. AWESOME. Poor thing. She threw up until about 11pm. At 2am guess who else started throwing up? It was me! I don't get sick very often and I don't throw up! I think it was the first time I've thrown up since the day I had Fletcher! And I surely didn't miss it! So, needless to say traveling home on Sunday with a throw up bucket was not a lot of fun! Craig and Kayleigh managed to escape getting sick! Anyhoo, we're better now and just trying to get back in the swing of things. We had new carpet installed last Tuesday and our house is still in a shambles! We almost filled the garage with just the knick knack crap and stuff on the floors of the girls closets! And the furniture stayed in the house!! It's time to purge! I'm determined to not let some of that stuff back in the house. So, we'll be working on some give away boxes for the next several days!


Friday night Kayleigh jumped in the pool with her clothes on!

Maddie and Kayleigh on Shamu. That's Marley's arm on the other side of Shamu!

Thursday, July 17, 2008

I think I might have a problem...

Earlier this week one of my friends invited me to look at her Facebook. Well, before I knew it I was on facebook and now I'm addicted to it! UGH! The funniest part is I have said I would never do myspace (because i think it's an instrument of the Devil :)) and no facebook for me either! Ha!
So, if you're on FB look me up. Maybe we can be friends! :)

Tomorrow we are going to pick up Kayleigh. We're all very excited to see her! She's been gone since the 29th of June! We'll travel all day tomorrow spend the day with her grandparents and head back to OKC on Sunday. We want to get back as soon as possible because we can hardly stand to be away from Fletcher! His grandparents and aunts are going to spend time with him so hopefully he won't notice that we're gone!


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This video is pretty fun. Fletcher loves to kiss and one of his favorite nurses, Lisa can get him to kiss three times every time she asks. So, we thought we'd try to teach him to count by giving kisses. Just watch the results it's hilarious! Lisa is still the only one he'll give three kisses!

Monday, July 14, 2008

Down on the Farm...

Actually I think it's a ranch and not a farm. I'm not sure I know the difference! :) Anyhoo, last night our friend Jeff invited us to his parents ranch. It was beautiful night and the weather was perfect! We had our small group and a cook -out. We had so much fun and enjoyed such great hospitality! The kids got to ride a horse named Sassy and then we all were blessed with a wagon ride by two Clydesdale horses! How fun is that?! Our small group is such a blessing! we're really enjoying each other and our time together. Thanks Frank and Johnel for having us out to your beautiful home!

Maddie and Miss Johnel
Look at those beautiful horses!

Maddie and Kylie

Well, look at Craig riding shotgun!

Craig and Jeff

Wendy and sweet Hannah

Betty and Randy

Thursday, July 10, 2008

Running with scissors...

Today Fletcher's speech therapist was cutting some paper and for some reason it just cracked him up! Since Fletcher has a trach he doesn't make noise. If you listen closely you can hear Fletcher laugh! It's so sweet to hear noise with the laugh and smile we love so much! He also got bored or frustrated and just started gripping about it! Oh yeah, and we probably shouldn't have given him a pair of scissors! Enjoy!

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I've been tagged...

I've been tagged by one of my new blogging friend's Missy. Here are the rules: You link back to the person who tagged you and post these rules on your blog. Share six unimportant things about yourself and tag six random people at the end of your entry. Let the tagged people know by leaving a comment on their blogs. Enjoy the results! Here we go...

6) I am obsessed with the way Maddie's hair looks. It's crazy and I have been flat ironing it since she started preschool.
5) I'm pretty sure I'm addicted to refined sugar.
4) I hate to clean my bathroom!
3) I LOVE a mani/pedi!
2) Ironing, I enjoy it!
1) My current project? I'm entering all my recipes into the computer and I'm printing them and putting them into a binder.

I'm pretty sure some of these things are character flaws and I should work on them! :)

I'm tagging:
Amber - Kristin - Michelle -Christa -Kacie

Friday, July 4, 2008

Happy 4th of July!!

Well, we had a great day having Fletcher at home! We just hung out, cooked some burgers and had friends stop by. It was a wonderful holiday for us! Fletcher was in a great mood today, except for when I wanted to get a family picture! I told him we can't have Miss Sherry come over every time we get our pictures taken! :) I love the fourth of July mainly because Fletcher has been in our home for all of his fourths! Fletcher still lived at home when he had his first fourth of July. He was at home on oxygen, but at home!

We watched fireworks in the parking lot at TCC. This is the first year we brought Fletcher outside to watch. He seemed to enjoy it as long as his wheelchair was moving! So we took turns walking forward and backward with him facing the fireworks! Our friend Andrew's family brought him out of his unit to watch the fireworks also. It was good to get to hang out with them!

Watching fireworks

Me and my boy!

I became obsessed this morning looking through pictures trying to find all of our Fourth of July Old Navy t-shirt pictures. I can remember all of them but I couldn't find but a few. So I decided to go with Fletcher's first since that's when we became a family of five!

Fletcher's first fourth of July 2005

2005

2005
(no Kayleigh because she was in MS with her grandparents)

2006

2007

2008

(Fletcher almost jumped out of my arms!)


2008

(no Kayleigh because she's in NYC)




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I think Fletcher is going to end up doing a lot of things with his feet. You've seen him with his pillow, today he amazed me with his tenacity at getting this football to his hand! Check it out!


New York City and fireworks...

Kayleigh arrived safely in NYC yesterday. Maddie and I spoke to her before she left and I texted her last night as she was about to go to dinner. I think she's going to have a blast! How fun would it be to watch fireworks on the fourth in NYC?!

Maddie spent the night with her Mimi last night. Sometime today they're going to go see Wall-E. She's very excited! Maddie has been talking about this movie since we saw Kung Fu Panda at the beginning of June!

Today we're going to bring Fletcher home! It should be a quiet day. Craig's dad, BIL, two of his nieces and Kayleigh are all out of town. We'll cook some burgers and just have a low key day. I'll post more later with pictures and maybe even some video!

Tuesday, July 1, 2008

Cousin EmiLee, snot and a monkey face...

Today Maddie's cousin EmiLee is spending the night with us. Maddie considers EmiLee her best friend. She absolutely adores her! EmiLee is ten and is so very sweet to Maddie and they get along great! I've only seen them twice today and that's because they wanted food! :)


Maddie & EmiLee

Since Kayleigh is gone Maddie will be going to TCC with me everyday for three straight weeks. As you know I go in the mornings and take Fletcher to school and for our walk afterwards. Maddie loves to go to school with Fletcher but in all honesty he can't get much done because of all sissy's 'help'. Today when we walked in she found a chair with her name and picture on it. Fletcher's teacher knows that she'll be with me so they have set up the computer for her to play on and watch DVD's. Do you get how sweet that is? They so don't have to make provisions for her, but they have! I love his teachers and therapists they are amazing people and I'm so grateful for each one of them.

One of Fletcher's friends got him this t-shirt. It says, 'Dude, your girlfriend keeps checking me out!' I LOVE t-shirts that have funny sayings on them. Maddie had one when she was about three and it said, 'I make stuff up'. Too funny!

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Apparently Fletcher can wipe his own nose. I didn't know this so I've been wiping it for him for sometime now. But now I'm on to him!:) The second video is Fletcher making what my girls call a 'monkey face'. I'm probably not being a good mom by one, videoing it in the first place and secondly, posting it on my blog for the world to see! Although he was sad it's the cutest thing ever! Sometimes he makes that face when he gets jealous. Today one of the RT's was talking to Maddie and I looked down at Fletcher and there it was the monkey face. He does get over it quickly!