Wednesday, May 20, 2009

Holding pattern...the waiting game SUCKS.

I can't beleive how long it's been since I've blogged last. SO much has happened in the time since my last blog. I will fill in the in betweens at a later date. Right now I need to vent about the past 4 days and waiting on NYU to call and get us a bed so we can start ACTH. We are on standby because there are no beds, and waiting is horrible. I'm going insane waiting for the phone to ring, and everytime it does ring I think it will be them and it's not. Not that I am looking forward to this, but I'd rather just go and get it over with so I can bring my baby home. Especially now with the 16 mo old boy who passed away from the flu I REALLY dont want to be in the city. I hate waiting. I hate knowing that my daughter is going to have to go through hell yet again, and we are just prolonging it at this point. I want it to be done ..get the process started so we can be closed to be over with it. And please God, PLEASE let this work. Don't make me do this to her for nothing.

Charli is making incredible advances in PT and Speech. She has been sitting better and sitting unsupported for short periods of time, and she is taking her right hand and bringing it to midline and using her left hand to play with her right fingers. She is using her right hand so much now its amazing. And..she is also making NEW noises the last few days, especially last night and today. She has been so chatty, and making "ooh and Ahhh" sounds, and a few "b" and "n" sounds. Her head control is great, she is moving her left leg so much and bringing it up so high in front of her she almost has grabbed her foot. She is also have flexion on the right side from her ankle down, and moving her knees up as if she is shifting weight in antipication to either roll or attempt to get up on her knees. She continues to amaze us everyday, and her smiles and laughs only get bigger and better. She is an amazingly strong girl.

I will update about our trip to Philly, our emergency trip to NYU right after Philly, and our last pedi appointment, and our appoint with Heme later. Now I am getting sleepy...so I think it's time to turn in. Thanks to all who read our blog and follow the monkey. I promise I won't take so long between blogs next time!!

2 comments:

JSmith5780 said...

Yup, you seriously need to blog more! :)

Katiebear said...

would love to hear how Philly treated you since we had a bad experience and now longer use CHOP for neurology.