I keep hoping I’d have better news to share, but the truth is that the last few months have been hard for Colleen.
At the beginning of November last year when we went to see the neurologist, we brought a list of all of Colleen’s regressions. It’s tough to look at. To see where she was and where she is now. 5 steps forward. 20 steps back. A medication increase really seemed to do the trick. And because there was room to increase a little more, we did. She was doing amazing in school and was able to participate and make strides. Her friends got to see their happy Colleen! Then the week leading up to Christmas break, she came down with the flu. We missed time that should have been spent with family. She slept a lot. Her myoclonic jerks increased.
And now, 4 weeks after she was finally rid of the flu, she’s still really struggling. I’ve lost count of how many times she’s had to come home because she was falling asleep. She’s had more bruises than I care to count from having her myoclonic jerks out of no where. I am sad for her. Her friends miss her and she has barely any energy.
Of course, I’ve been contacting neurology every few days. They’re going to get so sick of me calling that they’re going to have to do something. I’m just at a loss. They finally agreed to reduce her medication a little, and now we get to wait another week to see how she does. Praying this helps and she’ll finally get her energy back. And a little bit of freedom! I’ve had to put some toys away for fear she’s going to have another myoclonic jerk and hit her face again.
Here’s to hoping and praying my next pose has better news, health wise!