From 80 to 30

What a difference a day makes. Yesterday at this time we were getting ready to head out of Florida. I was dreading putting long jeans on again because it was quite warm and humid. Now we are expecting 4 to 8 inches of snow tonight... Oh well it's good to be home. I will post more pictures later but here are a couple from our trip.



He did make it to the beach one day..



And a few dips in the pool...



Here is something that the staff from the hotel made. They were wonderful and made us feel so very special. The shells were made of chocolate and the sand was made from graham cracker crumbs.

Now for some bad news. Cody will have to stay another night. His oxygen level is 94% when he is awake. It is 84% when he is sleeping. The beast is advancing in his lungs. He will get a CT scan today if they can schedule it. Cody's liver has swollen to the point of leaving very little room for food in his stomach but they still want to put the tube back in his nose. His bilirubin numbers have almost doubled. It appears that the liver will possibly do him in before the beast will. He needs to be sedated for the tube but they are not sure if his liver can handle the propathol that is used to sedate him. I don't really think I want to put him through the install of the tube without sedation. God please help him! I don't want my boy to go through this anymore. Please help him...

Help needed:

This blog has been a blessing in so many ways. It has given us a way to relay information to our loved ones that live far away. It has been therapy for me giving me a way to relieve stress and express myself. It has made many of you aware of a disease that you have never heard of. But it has seemed to cause a problem that I didn't foresee. As many of you know we have chosen not to tell Justin and Daniela about the dire straits that Cody is in right now. We didn't want to say anything until we absolutely had to. Well, unfortunately I think the time is near. A good friend of our family called me while I was traveling into the hospital today. She teaches at the school that our children attend. She called to warn me that the word of Cody's very serious condition has been spreading amongst the kids at school. The information that this blog conveys to people is written on more of an adult level and isn't written for children per say. OK, to the point. I'm asking all the parents and friends of children that go to Bennett Elementary School to please speak with your children. Please explain to them that Cody is very very sick but we still hold out hope that a miracle can happen. Our fear now is that Justin and Daniela go to school and hear some child say "I heard that Cody is dying." Or there may be that child that does not get along with Justin and Daniela and out of spite say something very hurtful. In the days, weeks, months and years to come we will have a tremendous amount of hurt to address. Please explain this situation as best as you can with your children. I know you all understand that we are trying to protect our children the best we can.