Just a quick update since its been a while. I got a note from Jenelle's PT last week informing me that "Jenelle took independent steps down the hall in the gait walker without assistance". For those who aren't up with the "physical therapy speak", this means Jenelle took steps all by herself in the walker! I think she may be walking within a year! I have yet to see her do this on my own but will welcome the day. At home we've noticed Jenelle trying to walk on her knees. She is so determined, and strong!
The weaning schedule is going well from Jenelle's pump feedings at night. After the first few days, Jenelle started waking up earlier than normal because she was hungry, but now she seems to be back on track with her sleep. In case you were wondering, we are not decreasing Jenelle's formula intake with the wean, we are just giving her more ounces during the day so that she can get all of her feedings during the day instead of supplementing with the pump at night. A friend was worried that we were "starving" her and that is simply not the case. We are trying to adjust her eating to more appropriate times, and to keep her interested in trying to eat table food again.
It's hard to believe but in 20 days, our girl will be 4 years old! Now that we have seizure control, I have no doubt that she will continue to improve and develop in her own way. Thank you for your continued prayers - I'll keep you posted!