Sara's Medical Status

Sara is such a trooper!  Over winter break from school, Sara under went surgery to correct the dysplasia in her left hip.  This was to provide her better balance and no pain when she was walking around.  This surgery came with its fair share of challenges, including a cast from her ribs to her ankles encompassing both legs for 6 weeks post-op.  Sara faced many complications after surgery, but was still able to get the cast off just 2 days before her 6th birthday!

Since then Sara has gone to PT, which she started in mid-Feb, and relearned how to crawl, walk, and just get around in general.  She did fantastic and was released from PT at the end of May.  Her balance is better then it ever has been before, so good in fact that her therapist said Sara should now be able to use some crutches part time to get around.  These crutches will not replace her walker or any other piece of equipment Sara already has, but will just provide her one more tool to use to increase her mobility and independence.  We placed to order for them right away, but as no one who deals with these things regularly would be surprised by, we are still waiting for insurance approval 2 mos later.  Hopefully that will come through soon!

Sara also had her annual MRI in June.  This year was a whole body scan, and I am happy to report Sara did great!  I love that she almost gets excited to go have her MRI and show all the nurses how brave she is when they put the mask on her with the "funny gas" that makes her sleepy...but ask her to do an ultrasound with that goo and she breaks down!  She hates that stuff!  LOL!  But anyway, Sara's MRI showed that all her tumors are stable at this time and she hasn't developed any new ones.  This is the best possible outcome we could have hoped for.  The doctor also enlightened me to a possible drug trial that might be available soon.  Its the first drug that has shown any promise at shrinking tumors instead of just stopping the growth.  It is currently in a Phase One trial, but if it goes to Phase Two soon there might be an option to put Sara on it.  Only time will tell, and we have to wait and see.  It could be weeks or months before the trail moves to the next phase, so I'm going to be keeping a close eye on it.

Sara will go back under the knife on July 29th to remove the hardware from her hip that we placed back in Dec.  Sara's leg and hip can't grow until it is removed, so the sooner the better.

Sara continues to stay healthy and not need to be hospitalized for infection.  Every day is a new record, and I pray each day that it will continue to be so.