Surgery update and a bit more...

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

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

before

after

Flirting and stuff...

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

Kayleigh the reader

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

Maddie Riding Hood

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

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

Heather and Fletcher working on the computer

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

Sitting up with mommy!

Tickle time with daddy

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

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

One hundred boxes and la la la...

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

First 100 boxes

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

Three days...

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

Happy Birthday, Kayleigh...

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

The birthday girl

Sisters

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

The cake..cute, huh?

So loved...

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

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

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

We're having a party...