Saturday, May 2, 2009


We saw the doctor and Sophia has hit 18lbs again! I am so thankful. The doctor was less than pleased with the fact that we can't get a barium swallow until the middle of june, so she is appealing to get it done sooner. WE should hear by monday at the lastest so please keep that in your prayers. She also had the swallow specialist come, who truly believes that it is more of some type of GI problem versus a structural problem in her mouth. She said it could possibly be low tone but she doesn't believe that that is the main issue. She recommends pushing for more testing until we figure out what is causing her to have such a poor appetite.
In other CRAZY news we got a bill today for one of her last appointments at Children's Hospital. It was over $900!!! Isn't that crazy? They ended up billing the wrong insurance so we are all set, but I had NO IDEA how expensive each appointment was! Thank goodness for insurance!
Sammy is doing ok. He continues to complain off and on. He is sleeping a little more than normal, eating a little less than normal, and is a little fussier than normal. This whole waiting game with the IVIG is so hard. I feel like we are waiting for the black cloud to come over us. Just waiting for him to get sick, which is a terrible place to be in. Sometimes I get nervous enough to where I wish we could just start the IVIG again. I just don't want to see him get sick. I don't want to see him suffer. I want to test his levels already. I want to know BEFORE he gets sick so ne doesn't have to get sick
I went for a walk with my friend Bethany and she put her sunglasses on Sophia, isn't this cute?

1 comment:

tiff said...

Good news that Sophia has put on weight, not good that you are getting conflicting information. Hope Sam hangs in there too.