Late May update....

As hard as this is to write, we wanted you all to know...

We do not have any inspiring updates today, Carson's disease has been progressing. His body has started to require less fluid, we have decreased his water intake by half. With the decreased water he has had less secretions, so we have taken him completely off Robinul. We had been seeing pretty significant water retention. While his body is getting less water and we are seeing the retention go away, Carson has had dryer eyes, mouth and bowel movements. We have been using eye drops and brushing his teeth more to help keep hydrated, as well as more Miralax. Carson has also stopped responding to us, his sister and other stimuli. Although we can not know for sure, we (and the doctors) believe his brain damage is spreading to his brain stem effecting all the autonomic processes. These processes include: heart rate, urination and eye movements. He has not been urinating on his own for about 2 weeks now, we have been having to catheter him every six hours. Carson has pretty much slept this entire week, awake only for a few hours each day that we can tell. As with the last 3 1/2 years we do not know what the future will bring, we are just enjoying every moment. I am looking forward to a week off of work the first of June, I plan to stay at home and enjoy my children. Please continue your prayers that Carson will not suffer and for Jeff and I that we may remain strong as our journey with Carson continues.