Three Month Check-In

We have such good news to report!  Charlie met with his neurologist today to discuss the results of his recent brain and spinal MRIs.  First, the spinal MRI showed that Charlie does NOT have a tethered spinal cord. The assessment of the original spinal ultrasound was wrong.  No tethered cord and no spinal surgery.  Charlie's doctor presented pictures of his brain MRI.  What was once a large black sea of blood is now a small centralized dot.  You can tell that there was a past bleed, but you cannot see its original extensiveness.  There is a small puddle of fluid retention next to the bleed, but it is minor compared to the white ghost-like haze that covered the entirety his right brain in the first MRI.  The doctor explained that his body is absorbing the blood very well and that the oxygen block that was created in the brain by the hemorrhage has now almost disappeared.  The brain is oxygenating and healing. Except for the black dot of the bleed and the small pool of fluid to it's side, Charlie's brain looks quite normal.  Charlie's neurologist is going to keep Charlie on his current dose of Phenobarbital for the next three months.  He explained that Charlie has been on the same dose from birth and has since gained almost 9 pounds.  So, in effect, he has been decreasing his dose in ratio to his weight all along.  By keeping him on the same dose until February, Charlie will wean himself off the drug as he gains weight.  Its also important to mention that the MRI showed no sign of seizure activity.  He is, of course, still at risk for all the physical and mental difficulties that a grade 4 stroke presents, but the new photos show us that he is capable of recovering - that he IS recovering.  The word that Charlie's neurologist used was "significant" improvement. As always, thank you, thank you, thank you for all your powerful thoughts and loving support.