Wednesday, March 31, 2010

Time Says "Go Back To The Hospital"

The cultures from Carly's CSF continue to look good and there does not seem to be any sign of infection in her brain.  While that is a very good thing, Carly has become increasingly uncomfortable over the last few days which had us concerned. Christa brought her in for some additional blood tests earlier today and the results showed that her platelet levels were very low.  As is typical for Carly it is a bit of a mystery what is going on, but she was admitted back into the hospital and will be getting a transfusion tonight to bring her platelet levels back to normal.  They will also run several tests to see if there is an infection somewhere else that could be causing this problem and hopefully we will have some answers tomorrow. Thanks for keeping our little c in your thoughts.

Love, Brad

Saturday, March 27, 2010

Time Will Tell

Carly's MRI on Thursday went pretty smoothly.  She took a little while to wake up from her anesthesia but once she stirred she was ready to head home.  The initial results did not show any signs of tumor which is a big relief.  The radiologists did note some enhancement of her ventricles which was not expected.  This could be an indicator of an infection or inflammation of this area of her brain, but it could also be nothing at all.  To rule out infection and inflammation, neurosurgery tapped Carly's shunt yesterday to get a sample of her cerebral spinal fluid which they are culturing now.  The initial results after 24 hours did not show any signs of infection or inflammation which was great to hear.  The lab will continue to culture her CSF for the next 5-7 days, but with good results so far we are hopeful that there will be no issues.

Love, Brad

Tuesday, March 23, 2010

Mountain Air

Carly’s slow but steady progress has continued over the last few weeks. She is spending more time awake, some days for many hours in a row, which is a great change to see. She particularly likes to spend time swinging both at home in San Francisco and this week in Tahoe where we are spending a little vacation time. This Thursday she will have an MRI for her one year post tumor check-up. Should it confirm that she is still tumor free, then she will be able to start growth hormone replacement in the next few weeks. We will learn more about that at an April 7 endocrine appointment, but that can only mean good things for Carly’s development.

I am sure there are a wide range of political persuasions that follow Carly’s blog, but today is a day for celebrating as far as we are concerned. The health care bill that was signed today is of significant importance to Carly and so many other people in situations like her. Before today we had to worry about a lapse in insurance coverage that could have opened up Carly to denial of coverage for preexisting conditions. Carly would always be in danger of reaching her lifetime maximum coverage and could have been forced to make life decisions for insurance purposes only, rather than getting to follow her dreams. We have been blessed by having great health insurance, but we can’t help but think of the millions of other families who are not so lucky and are forced to make decisions on medical care that they should never have to. We are thrilled about the new law and what it means for Carly and many other people facing health challenges.

Love, Brad

Wednesday, March 3, 2010

March On

The rest of February was nice and quiet in the Nelson house.  Carly's progress has been slow, but it has been all forward progress with no surprise setbacks.  She is spending more time awake each day, and is now starting to use her hands more than we have seen in many months.  She has also gotten a lot better at holding up her head, and she has enough trunk strength to sit up on her own for many minutes.  She was recently given a stander which we now have at home.  The stander is a piece of equipment that supports Carly in the standing position so she can experience having weight through her legs and feet.  She wasn't too sure about it at first, but she is getting better at it each day. We spent two more weekends in Tahoe, and one in Pt. Reyes and Carly seems to enjoy being on the move and in these beautiful outdoor places.  It is therapy for the entire family.

With May not far away it is time for the annual Bay Area Brain Tumor Walk, one of the main fundraising activities during National Brain Tumor Awareness Month.  Team Carly raised an amazing $11,000 last year and although there was some rain, we all had a great time walking for a good cause.  Team Carly will be out in force again this year and we hope to top last years's fundraising goal.  You can join the team by clicking here, and you can choose to walk with us or sponsor one of the team members if you are not able to join on the day of the walk. Thank you, and we hope to see many of you there.

Love, Brad