Friday, May 23, 2014

Neuro follow up

Lily had a follow up with her neurologist on Tuesday and it went very well. She's gained some weight from her pediatrician visit last month (we'll see what he says next week....Lily is not a fan of formula and so we've been keeping on just nursing), though her head hasn't seemed to have grown any. He thought it is a good thing that we're getting the CT Scan next week and that he's pretty sure that she'll need surgery, too.

The neurologist was "cautiously optimistic" about Lily. He tested her reflexes again and said that she was doing better than our first visit with him. He said again he wasn't concerned with her twitchy movements and that after her surgery in July we could start an eight week wean of her seizure medicine. That's fantastic! There's always a chance that she could have seizures later on down the road, but since she hasn't had any yet, it's probably better to be off the medicine than on it.

He said that he wouldn't discharge her until she was at least three, but that he even brought up the possibility (however small!) was very encouraging. We left there happy and the doctor said he would keep Lily in his prayers. Can't beat that.

Lily has been keeping up with PT once a week and has been improving. She can roll to both sides, from back to belly with a little help, and belly to back without help (usually). Her head control is getting better, though she can still be a little wobbly. She was able to sit by herself for a second a few times, but doesn't yet know how to put an arm out to prop her up or stop the fall.

The most exciting thing Lily is doing is bringing her hands up to her face. She was doing it a little while she slept or was sleepy, but she's now doing it while wide awake and she's working hard to do it! We get so excited when she brings her hands together or brings her hand up to her mouth or even rubs her nose. She's not able to keep them there for long, but we're seeing improvements every week.

                                                         Happy 6 month birthday, today!

Thank you for your prayers!

Specific requests:

We've got the CT Scan next Wednesday that she'll be sedated for- that it would go well and that the next steps for her care would be clear, that Lily would continue to gain weight and that she (and especially her head) would continue to grow.


  1. What wonderful news!!! I will be praying for her. Please keep us posted.

  2. Keep up the good work, Lily! We're praying for you!

  3. Thank you for the updated. THANK GOD she is doing SO well!!