Hallie update

The last few weeks have been very busy as we have decided how to move forward with getting help for Hallie and trying to make it happen. We are going to Stanford on Monday. She has an appointment with the nurse practitioner there and she will guide us as to which doctor will be the best fit for Hallie. In essence, they work as a team and will all be working together to figure Miss Hallie out. We are very happy that they were able to get us in, in such a short time frame!

We have also contacted Cincinnati Children's hospital and they have doctor that specializes in motility issues. He was voted among America's Best in 2008. In the few short conversations with their department, we have gotten more direction and hope than we have had for a long time. They are still waiting on getting Hallie's medical records before they will schedule her appointment, but it looks like her appointment out there will be December 7. The plan is to be there for a few weeks so that we can do testing and any follow up. We were supposed to head out there for Christmas, but we will be moving our trip up to accomodate the doctor and make sure that we can get any tests done while we are out there. After she has been seen out there, Dr. Kaul will consult with her Stanford doctors and hopefully we will be able to utilize his expertise at a little closer location!

Hallie will also be going in for a biopsy as soon as I can get it scheduled. They want to test her for Hirchspring's Disease, which is where part of the large intestine does not have any nerves. I thought she was tested for this when she was a baby, but when I had them go back through her medical records, they couldn't find any evidence of it. The longer this goes undiagnosed, the more life threatening it becomes, so we are anxious to get this done and rule it out.

It has been really hard to try to figure out how best to help Hallie. There are so many programs out there and we truly feel like we have been led to these doctors for a reason. I have questioned many times whether we were making the right decisions for her and whether we truly need to take her all the way back to Cincinnati for help. Interestingly, I contacted her pediatrician today about other things and she told me how pleased she is with the direciton we are going. She said that the severity of her bowel disease is very uncommon and we need to seek out the best in the nation to give her the best chance. She said the two programs we have selected are among the very best for her issues in the nation. It was very nice to get some positive validation from a doctor for once, not just feel like I am fighting tooth and nail to get her the help she needs!