Whew! Oh my goodness….did I really get to type that title? 2 months! We have made it 2 months without a seizure! Relief is an understatement. It has been so nice to allow him some independence and feel a bit of freedom ourselves. I don’t feel like I have to drop whatever I am doing if he wants to go play in another room. I can finish up the whatever I am doing and let him go play.
We are so relieved that the seizures are at bay for now, but there is still a long way to go. He is not eating as much as he should, side effect of medication. He sleeps way too much and on very strange schedules. He can literally sleep through a noisy preschool classroom because he is so exhausted.
We talked to his doctor and for now Gabriel’s weight is fine, so we will talk with the dieticians for some ideas and stay the course. The wait and see portions of the doose journey are some of the hardest. It has proven fruitful in the past and at other times we have kicked ourselves for waiting too long to act. Please pray for discernment for us as we negotiate these new waters, pray also that Gabriel will eat. When he does eat and have energy he is doing so well. Especially interacting and having conversations. He runs shorts distances from one spot to another again. It is so hard to see my 4 year running with the motor control of a young toddler but then I remember…he’s running again and smiling the whole way.
My biggest joy right now is through all of this he is happy, he knows he is loved and he is closely attached to his Daddy and I. At the end of the day that is good news….and 2 months without seizures makes it even better. Hoping that I get to write a 3 month post in a few weeks.