Declaration of Independence

You know that phase when your child goes through that first fierce independent streak? Where they insist on doing everything themselves? And you admire their determination, but you're also thinking, "You can't do it by yourself yet. Please please please! Just let me help you!"

Cyrus has been doing the Cyrus equivalent of that. Where he just has so many opinions! He thrashes back and forth trying to get out of his chair throwing out limbs in every direction or throwing his chest or pelvis forward to break free or slide forward. He is grabbing medicine and food pouches out of our hands and then squeezing it all over all of us. And rolling away from diaper changes. All while moaning insistently at us in rebellion when we insist that we have to take care of him.

There's one absolutely wonderful thing he's starting doing again, which is throwing one arm around my neck! I think he's doing it to hold on, he sometimes will hook his arm onto other things as well. But to me, it feels like a hug. And I like that feeling. A lot! Just this simple action gives me an earsplitting grin! Then, not a second later he decides to elbow me in the face!

And really, all these things are exciting to me even as they are aggravating. Because, as you may have guessed from my last post, the last few weeks have been rough with Cyrus having more breakthrough seizures that have been longer and more intense. And more debilitating to his expressions, personality, movement, and opinions.

During the last month I had been unable to get ahold of our neurologist substitute (Cyrus's regular neurologist is on maternity leave, and boy, do I miss her!! Though I absolutely cannot begrudge her absence!), but we finally had our face to face appointment and were able to make a plan for medication adjustment! And oh my goodness, the difference it makes is amazing!! We had one day of decreasing seizures, and the following three days have been seizure free!!

Now we just have to put up with pharmacists calling us in concern that his current dosage is too high.  I roll my eyes at this. Standard protocols do not understand how much of an edge case we are! Cyrus handles sedatives like his mother - they burn through his system like wildfire. And for a few of them he has a reverse reaction, in that they make him hyperactive rather than sleepy, which is fortunate for us as it means he can handle the higher doses that his condition needs to maintain some semblance of seizure control.

As long as the insurance company doesn't call with the same complaint, I think we're good! I'm probably okay with my pharmacist worrying about us after all.

Anyway, my point is, keep up the defiance Cyrus! I enjoy your opinions and objections much more than the cooperative zombie baby that sometimes takes your place.