|Buster mowing the lawn|
When we first got home from the hospital, things were very rough. Will was only allowed 900 calories per day, and he was very hungry all of the time. He often just stood in front of his high chair crying, which absolutely broke our hearts. We took to eating our meals in the pantry with the door shut because it was just so sad to eat food in front of Will. Of course, now we have created a monster because after seeing us do that, Jack has started hiding in the pantry and sneaking a LOT of cookies! After a week, the dietician increased Will's daily calories to 1100 because Will had lost over 3 pounds and gone down a diaper size, and things seem to be much better now.
As our neurologist had predicted, we have been seeing definite improvement in Will since starting the diet but not seizure freedom. Will has gone from a range of 5 to 10 seizures per day before the diet, to most of the time 1-2 per day, and sometimes they are only occurring every other day. He has been more aware and interactive with us. More than anything, he has been very happy, which is absolutely awesome to see. Although the diet is definitely doing something, we can't conclude it as a success at this point, because in order for his development to move forward we need to completely eliminate the spasms. So far, that has not yet happened, so we are bracing ourselves for eventual brain surgery but still hoping that things continue to improve. One other good thing, the blood tests for Will's lactate and pyruvate levels came back completely normal, which means that we can basically rule out mitochondrial disease as a potential cause of his seizures. This is a huge relief.
|Bullseye Rash on Will's Arm|
Thank you to everyone for following our blog and for all of your continued support. We hope that everyone enjoys a wonderful 4th of July with their families!