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!
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5 comments:
Go Jenelle! That is fantastic. I have no doubt that she will continue to improve as well, she's come a long way. What a girl.
Congratulations on the improvements. I found your blog and find it very encouraging. I have a 3 year old son, a 2 year old son and a 5 month old daughter. My daughter has a deletion in her 21st chromosome, which leads to several issues. Your story sounds to be a life of wonder!!!!
What wonderful news. I'm happy to hear things are going so well, especially knowing how hard you've all worked hard to get here.
Oh yay! I'm glad it's going well.
We did NG tube feedings at night with my eldest and it actually took us a couple of years for him NOT to want to eat during the night. It was really hard for us. He was 3 and I had to leave a bottle or sippy cup of Pediasure in the fridge each night because he would get up and want to suck down eight ounces. When I finally stopped that, he just eliminated that feeding all together. It was something the doctors could never comprehend. Now, that kid is a machine when it comes to eating and can chow an entire large pizza in one setting. His step-dad doesn't understand why it is hard for me to control the boy's portions because he wasn't on the picture till he was almost 3 and he was past much of it by then (or it was transparent to my then-boyfriend).
Good luck with this. I know it is hard to do.
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