Things are still pretty bad in terms of Avery's pain issues. In fact it was so bad yesterday that we were concerned he may have a fracture. He already has osteopenia so this can happen so easily without us knowing as did last yr. when both humerus' were fractured and we had no idea. Luckily his x-rays looked great so that was relieving but still not explaining what is going on. He is still up ALL night screaming in pain. we increased some meds and tonight added valium. Thank god the team is coming in the morning.

They also had asked me today about adding a consult for pallative care for Isaiah. Now many would be shocked thinking he doesn't need it which is sort of the truth but this team is soooo wonderful in terms of handling pain issues and care in general. It makes things so much easier for our family instead of calling 50 drs. and getting no help. So I am happy to do it for him, especially b/c he is still retching every night (we are giving him alot of ativan) so I would like to find something better for him as well.

Tomorrow will be a very busy day for everyone. I am meeting with the team and then have a very busy work week. I will keep everyone posted on our craziness :). Hope everyone has a good week. Thanks for reading.