Today...

Today Fletcher started day one of a three day infusion therapy of Pamidronate. They had to start a peripheral line on him this time because his port is a mess right now! The skin around his port is colonized with MRSA so it's not safe to use the port because we don't want the port infected with the MRSA. The port had been oozing pus so they've been culturing it every week to see if it is growing anything so far so good, but the skin that covers the port is non existent and the actual port is visible! It is quite a sight to see. They are keeping it covered and working on different options to make sure we can keep it.

Today Fletcher's dermatologist, Dr. Adelson came to check on him. Fletcher has several warty moles on his head and Dr. Adelson is trying to find the best and safest way to remove them. So that's been tabled for a bit. He also suggested that we start a relationship with a pediatric plastic surgeon. Fletcher is doing so well that we think it's a great idea as well. So I'll keep you posted on all that.

Three days...

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! :)

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!

Cool new toy...

Get a load of this cool new switch activated toy Fletcher got to use in class today. I love watching his face as he figures out that he's the one whose making it move.

Recently Craig and I had a meeting with the pediatrican at TCC. Fletcher has lost 36% of his bone mass since he's been at TCC and 27% of that since last October! Dr. Brannon wants to try an infusion therapy with a drug called Pamidronate. They would do the infusion over a three day period barring that Fletcher handled it well. Pamidronate is basically Phosomax. I'm sure you've seen the commercials they use it for women with osteoporosis. They are likening Fletcher's bones to that of a 95 year old woman. The Pamidronate would promote bone strength. They'll monitor him very closely because there is a chance that it could mess up his electrolytes. We definitely don't won't his electrolytes out of whack again! Fletcher had an appointment with his endocrinologist yesterday, Dr. Domek thinks we should go for it. Basically he asked what we had to lose? Craig and I haven't made a final decision just yet. We need to pray about it and would appreciate your prayers also. Well, it's late and I need to go for now. More later...