Sorry about the lack of updates -- trust me when I say that is a very good thing. We have been so crazy busy lately, as most of you know I try to cram all life's excitement into the short time we are home and out of the hospital. We mainly are spending most of our days at the pool and splashing in the water, which has been an absolute blast!
Today we spent the day down at duPont getting Gavin's new central line! The placement went smoothly and our buddy Dr. Katz was able to place the exact size line I requested without any issues. There is some concern over Gavin vessels as they are getting very small due to scaring. It's interesting that Gavin does not make enough platelets to keep his counts up and how this actually is working in his favor and is actually giving us more time as it lessens the chances of his vessels clotting. We did have a little scare with the Anesthesia today as it was very difficult to wake Gavin up. His autonomic issues seemed to heighten in response to the sedation and he basically went into a little hypothermic way to deep sleep -- but eventually came out in his own time.
Tomorrow Madison has her four year well check, which is a real highlight in her little life. I'm sure we will have lots of photos to document her special day! We will also be heading down to duPont again for wheelchair clinic where Gavin will be evaluated to a new wheelchair and some other possible equipment.
After are busy day we will all pack up and head down to the beach for the week! Let say lots of prayers Gavin does well and we all have a nice week without any drama!