Update

So, I haven't written in a couple of weeks.  Normally, by the time the kids go to bed at night I am so exhausted I don't feel like doing anything, even writing.  Instead of writing several blogs about individual events, I will try to do a shortened version of the past couple of weeks.

After leaving the hospital, we then had to wait for paperwork regarding the pulmonologist appointment.  We were hoping for sooner than later, but had to wait.  In the meantime, Tony had been in contact with Jackie, who is in charge of the SMA research at Columbia University.  She let us know that Bella had a spot reserved for her as long as all of her medical records were received and she didn't have any respiratory issues.  We still didn't have that appointment, so we were hoping it would happen before the trial.

We ended up having to reschedule the pulmonologist appointment.  Bella was scheduled to see Dr Hassan in August, which was too late to get in to the clinical trial.  Tony called the hospital and we were lucky enough to be able to get in to see Dr Lumeng the following week.  We were both relieved that he could see Bella so she could be in the clinical trial.

On the day of the pulmonologist appointment, Bella also had her first test drive of a motorized wheel chair.  We drove up to Bridgeport to meet with Bella's PT, Stacy.  Bella did really well.  She picked up on the stop and go quickly.  She drove up and down the halls.  I couldn't believe how well she did for her first time.  We also met with someone from a DME company who answered some of our questions regarding insurance, wheelchairs and ramps.

After leaving Bridgeport, we drove to Ann Arbor.  The appointment went surprisingly well.  Bella actually was not afraid of Dr Lumeng.  She didn't even cry when he listened to her heart beat and her breathing.  It was quite amazing.  He didn't hear anything wrong, but wanted to get a chest x-ray done for a baseline. We then went to have the x-ray done.  When we were called back, the tech informed me that as long as Bella could sit still she wouldn't have to be strapped down.  I was worried that I would have to deal with a screaming Bella if this happened.  But once again, Bella surprised me.  She sat in the chair and both x-rays were taken in less than two minutes.  I was so proud of her.  She is such a big girl.

We received the results from the pulmonologist appointment today, 4/12/2012.  Everything looks good.  Her x-rays came back clean and her heart is a normal size.  She has a slight curvature in her spine.  His report states that she has no issues as of right now.  Hopefully tomorrow we will email the results to Jackie at Columbia and we will have the dates for the clinical trial.