August 28, 2008

Here we go - AGAIN

Sydney's appt. with Peds Pulomonary is set. Depending on what his thoughts are, she will probably have a sleep study and then follow up with a CT surgeon. Any thoughts on Peds CT surgeons????? Advice is welcome and prayers are SO appreciated.


August 15, 2008

roller coaster.....

that's what it feels like. We met with the ortho Dr. today and - well - I just don't know where to start????? He said he cannot imagine saying the things he said last year - WHAT?????? Basically we are sort of back at square one. He feels that maybe something could/should be done for the scoliosis. The 1st step is to get a Pulmonary consult and probably a sleep study to evaluate her lung function. The next step is to meet with a thoracic surgeon (we've also done this and he did not recommend surgery) the reason for this consult is to evaluate the possibility of repairing her concave chest. This would hopefully alleviate pressure from the lungs as well as the spine. These are things we were expecting to hear over a year ago. We're just clueless...............Please continue to pray for all of us as we move forward.

August 7, 2008

a change?

After a great follow up appt. a few weeks ago we have spoken with Sydney's Dr. and there has been a slight increase in her tumor. At 1st I was just devestated but Her WONDERFUL Dr. quickly talked me down. According to the MRI there have been no changes but a more indepth study reveals that the extreior portion of the tumor has increased slightly. She also had an xray that revealed scoliosis (we knew this already). Her Genetics Dr. has requested another consult with Ortho. This appt. is scheduled for August 15th. We met with Ortho last year and he made it VERY clear to us that there was NOTHING he could do for Sydney. But here we go again.....Please keep Sydney and our family in your prayers.

Thanks and blessings,