March 28, 2006 at 10:43 PM EST

March 28, 2006 at 10:43 PM EST
Things went pretty well

Today after a very anxious night and a busy morning the CT scan and spinal tap went pretty well. They didn't find any blockage, blood clots or infections so far. They are telling us that Simon has something called pseudotumor cerebri (or false brain tumor). Its not a tumor but swelling caused from poor absorption of the spinal fluid. The doctor drained 4 mls of fluid out of his spine becuase there was increased pressure there. We were hoping that would eliminate some of the swollen head top but so far it has not. The doctor from neuro told us that they will probably put him on meds that will help the spine to produce a little less fluid and hopefully the swelling will go down. Simon has been throwing up all day so we will have to consult them about this as this is a sign of that but he also has been throwing up alot anyway and this will definately keep us from going home Right now he is chatting it up in his crib.

Tomorrow we have another round of vntr draws to see how many of marrs cells are present. Simons counts have been low for a few days so we need your prayers. The girls, myself and their grandma and grandpa do the cell dance at home. It consists of all of us holding hands and jumping around with crazy legs singing about marrianas cells growing in simons body and simons leaving. So if you are so inclined, try it at home with your family. Thank you so much for the prayers - they are helping. We ask tonight that you pray too for friends of ours nephew who too is dealing with a very serious illness and is battling it again. God Bless you Amanda and Mike and your family. God Bless all of you. Hug your children twice tonight and snuggle with your loved one. You never know how much you would actually miss doing that. Good night and God Bless. Tracy and David