A busy day...

Today was a great day and full of activity! We went to church then for lunch we went to Louie's. We had never been there until today, but we received a gift card and we really enjoyed our lunch. We took the girls to TCC to see Fletcher. Maddie can't go into his unit so we took him to a family room. Fletcher's PT worked on his wheelchair on Friday and came up with a great solution, she laid the seat down with a gel type pillow and we laid him on top of it. He stayed in his wheelchair for about an hour and a half with no problems! Fletcher really enjoyed seeing his sisters today. They laughed and giggled the whole time. We then had a birthday party to go to for my nephew Gabe. It was a bowling party and we all had so much fun. Craig and Maddie bowled, Kayleigh and I watched and cheered them on! Craig did pretty well on his first game and Maddie well...I have NEVER seen a bowling ball roll so slowly in my entire life! She was so serious and really wanted to knock those pins down but that ball barely made it to where the pins were! It was hilarious!

Kayleigh, Fletcher & Maddie

Craig & Fletcher

Me & my little man

Maddie waiting on the slowest ball in the world!

Oh well, maybe next time...

We are now home and Craig and Kayleigh are playing Guitar Hero and Maddie is driving them crazy! Fun night at the Burns' home! As you all know things have been crazy around here with Fletcher, but some fun things have been happening also. On January 6th Kayleigh turned 14. Happy Birthday, Sis! You are wonderful and I'm so grateful to be your mom. You are sweet, kind and very funny! I love you very much! Kayleigh had a small slumber party with two of her cousins, Megan and Devon and Kayleigh's new BFF Vanessa. They played Guitar Hero, ate lots of junk food and stayed up way too late! But fun was had by all. Her party was the night Fletcher went into the hospital so Craig's mom took the reigns and made the party happen. Maddie lost her third tooth. It looks like she has lost two teeth but it's just one tooth! She also got her ears pierced, something I've been trying to talk her into for two years now! She just decided one day that she wanted her ears pierced and I quickly took her up on it! That's all for now. Thanks for stopping by!

Vanessa & Kayleigh

Devon & Megan

The 'gone tooth' her words, not mine

Sweet boy...

Today Fletcher had a great day! He woke up happy and ready to play, kiss, read books and sing songs! He has been doing so well since he's been back at TCC. He's sleeping better also. We are so thankful for these good days. Whenever Fletcher has an appointment an EMT named Joel takes us. Fletcher loves Joel, he's a very nice man and he likes Fletcher as well. Fletcher is wearing Joel's bucket hat in the picture below. He loves hats these days and always puts his hand up in the air anytime he sees a man in a hat. Joel handed him the hat and we put it on Fletcher's head. He loved that hat! Joel came back into Fletcher's unit later in the day with a little bucket hat just for Fletcher! Isn't that sweet?

Joel's hat...

Fletcher's new hat!

Life at TCC...right now Fletcher is not leaving his unit. They are worried about his bones and the risk of fractures. So, that means he isn't going to class, but today his teacher came to him. He had a great time playing with Ms. DeLisa. We are still holding him as much as possible, just watching for any signs of discomfort, so far so good. We are still trying to find a way for Maddie to see Fletcher. She can't go into his unit because it is RSV season. We could take Fletcher to a family room but we have to find a way to get him there. He can't sit up in his wheelchair so we're working on that right now. I need to go for now I'll post again soon.

He's back...

After eighteen days in the PICU, Fletcher is back at TCC. We arrived via EMSA at about 11:00 this morning. Fletcher was very happy to be back in his own bed and in familiar surroundings. People from all over the building came to welcome him back. It was very sweet. We are glad to be back, but still a little worried. Craig and I have some very serious decisions before us, we would appreciate your prayers. We want to do what is best for Fletcher. That's all for now. I'll post again soon. Thanks...Denise

A GREAT day...

Today we had a great day! When I arrived at the hospital I was greeted by a therapy dog, Sergei. They asked me if I thought Fletcher might like to see the dog and I said sure! Fletcher LOVED that dog! I don't have any idea what kind of dog it was but it was calm and sweet and furry! The owner of the dog would tap Fletcher's hand with the dog's paw and Fletcher would crack up! It was so cute. We had quite a few visitors tonight and Fletcher entertained each one with kisses, high fives and throwing his little basketball. It did my heart good to see him so happy.



Fletcher did have a couple of episodes tonight of desating and his heart rate dropping really low. It was so scary to watch him struggle. He desats a lot, but usually his heart rate stays normal. We are concerned about his heart rate dropping like that. It has happened at least once everyday for the past three days. We should go back to TCC tomorrow sometime. I'm ready to get back into our routine. A lot of my sweet friends have offered to watch Maddie in the afternoons so I can spend as much time with Fletcher as possible. Thank you for your continued prayer as we head back to TCC. I need to go for now, I'll keep you posted.

Another good day...

Fletcher has had three consecutive good days! We are so grateful for these good times and we are cherishing every moment we can with him. Fletcher is still in the PICU his respiratory problems are much better. His electrolytes are still low but they are leveling out. TCC wants Fletcher off of the IV electrolytes for 48 to 72 hours before he can return. He hasn't had any IV electrolytes in two days! He will stay in the PICU over the weekend and if all goes well he'll go back to TCC on Monday.

Even though Fletcher is in the PICU we have enjoyed seeing our friends there. The nurses and RTs have taken such great care of him. They truly love this sweet boy. Some of the new (to us) nurses and RTs have fallen in love with him, too. I have been told several times that they have heard about Fletcher for the last two years and they are enjoying getting to know him. Lots of his care givers from TCC have visited him in the PICU. It's been very sweet to see a glimpse of how many lives Fletcher has touched in just three years. Though he can't speak, he is teaching us so much.

We would appreciate your continued prayers. I'm ready to be back at TCC, but I'm also very nervous. I keep telling myself to be in today and trust him to Jesus. It's hard. I also remind myself that only the Lord knows the number of Fletcher's days. I just want to make the most of them!

A good day today...

After three very tough days Fletcher had a great day. He was so happy and playful today! I enjoyed a very sweet afternoon with my son. We read books and sang songs. He laughed and kissed me a lot today! At one point, Fletcher was laying on his side watching a DVD and I leaned over and put my cheek on his, he reached up and put his hand in my hair and played with it for what seemed like forever. That had to be my favorite part of this great day with my sweet boy.


This is a picture I took of Fletcher today. His little eyes have been swollen for a few days. We are still in the PICU at Baptist with the hope of returning to TCC tomorrow or Thursday. Fletcher's pneumonia is much better, but the administering of his electrolytes are the hold up at this point. In the PICU they are able to give him IV electrolytes but there are some issues about giving him IV electrolytes at TCC. They are trying to work out a plan between the hospital and TCC so we'll see what happens. I'll try to update tomorrow. We would appreciate your prayers. Days like today make it hard to believe the bad news we've been given. The Lord is sovereign and we'll enjoy each day He gives us. Thank you so much for your love and support!

Today...

Today Fletcher had a pretty good day. He was very playful and smiled a lot. Which I think indicates that his pain and discomfort is being treated well. I took his little DVD player up to the hospital yesterday and I think he really likes watching it. He has a few Praise Baby and Baby Einstein DVD's and he just watched and listened to them. It was so neat to watch him enjoy the music and pictures.

They did x-rays on his spine today and Fletcher does have compression fractures. I'm not really sure what that means and how they'll treat the fractures.

The plan at this point is to get Fletcher off of the hospital ventilator and on to his 'home' ventilator. And after ample time on his ventilator they will send him back to TCC. Well, today at about 1pm they tried putting him on his ventilator and he did great! As a matter of fact he's still on it and seems to be doing well. I'm so grateful for this news. I know you all have been praying and the Lord is answering your prayers. Thank you for loving our family through this difficult journey we are on. Your response through emails, comments and visits at the hospital are so amazing and comforting. We are trying to stay in the moment and not let our minds go too far into the future. Again, thank you for all that you're doing for us like I always say the body of Christ in action is a beautiful thing!

Update

Fletcher is still in the PICU at Baptist. Right now everything that is going on with him is so complex and hard to understand and to explain. I will try to do my best to explain what is happening. About a month ago we found out that Fletcher has Hypophosphatemia Rickets, basically he has the bones of a 95 year old woman. He is very fragile and in critical condition. Fletcher is experiencing bone pain and he is very agitated. At this time we are trying to manage his pain and keep him comfortable without completely sedating him. He is having moments of smiling and giving us kisses. But his times of pain and agitation outweigh those good moments. Yesterday they took x-rays of Fletcher's extremities. They showed us the films and what we saw was unbelievable. His little bones are bent and bowed and barely have calcium in them. His right arm had several old fractures, meaning his little arm as been broken several times and we didn't even know it! There are no new fractures on his arms and legs, they believe he might have some compression fractures on his spine. They will take more x-rays tomorrow of his spine and pelvic area. The problems with his electrolytes (calcium, phosphorus, sodium, potassium, etc.) are not fixable. We would appreciate your prayers as we travel this road. We firmly believe that only God knows the number of Fletcher's days and nothing we do will change His sovereignty.

Update

Fletcher is still in the PICU at Baptist. He is better but he is still struggling. He is very agitated and fussy. Today they started him on morphine to help calm him. There are some things going on with Fletcher that I just can't blog about right now, but just know that he is very sick and he needs prayer. I will update later when I have more information. Thanks so much for praying we really need it. I took this picture tonight while he was sleeping.

Prayer Request

Fletcher had to be transferred to Baptist Hospital this afternoon. He has had pneumonia for a couple of days and today he took a turn for the worst. He is now in stable condition and in very good hands. I'm asking for your prayers. I will keep you updated. Thanks!

Party Time!

Fletcher's birthday party was Sunday afternoon at TCC. We had a great turn out over fifty people came to celebrate Fletcher with us! Thank you to all of our family and friends for taking the time to come and wish Fletcher a happy birthday! One of my dear friends, Tammy came all the way from Arkansas to wish Bubba well! There was a construction theme with cupcakes, a dump truck filled with dirt pudding, snack foods and drinks! My niece Amber made the dirt pudding and the goody bags, like I always say she's wonderful! She and her mom, my sister Dawn took charge and made everything happen so I could be with Fletcher. It was a great day!

Aunt Dawny and Fletcher

Mommy and Fletcher

Dirt pudding

Fletcher had another party today with his little classmates and teachers. They sang Happy Birthday and had two presents for Fletcher! How sweet is that? Fletcher did great in class, he was really happy to be there today!

Present time!

A keyboard, cool!

Thanks, everyone!