Holly still has a headache whenever she is upright. Originally it would go away when she laid down, but the past couple of days she has been out shopping and has discovered that if she is upright for any length of time it won't go away.  She has not been happy about it.  Her tummy incision also is still bothering her. This is very unusual and we've had enough to know it's not right. 

We see Dr Gaskill next Tuesday.  After that Holly, Hope and Mom are heading to Wisconsin.  We will be attending the ASAP Chiari and syrinogmyelia conference. This is the first time the girls have been and they are very excited.  For the first time they will spend 3 days with people who know exactly how they feel and have been through all the same things.  Holly is worried she won't have fun with her pain like it is but I told her the whole point of the conference is to be with people who understand what your life is really like and if you lay down on the floor they will just join you!  

The conference is also going to give us an opportunity to talk with the country best neurosurgeons and find out if they have any ideas for Holly.