A quiet weekend

Lou and I had a nice, quiet weekend with Ty.  I also took time on Sunday to go home for the day and spend it with Gavin.  It was very special to have that one-on-one time with the baby, he is getting so big, we had fun!

Ty's staph infection is cleared from the bloodstream but not yet under control in his spinal fluid.  He continues to be visited by neurosurgery twice a day... once to tap the shunt and pull off some fluid to test the level of antibiotics... then to inject the shunt with additional antibiotics accordingly.   We will be staying in the hospital for the rest of his radiation therapy (three more weeks) because these injections need to be done in a sterile environment under close supervision and until Ty is well enough to have the shunt replaced, the infection won't be under control unless the antibiotic regimen remains the same. 

I am very happy to report that Ty is finally coming off of his steriods.  Slowly but surely, he is on a slow taper and we hope to be completely free of them by the end of these three weeks.  Steroids cause infections and high blood pressure while masking fevers, so they are likely responsible for Ty contracting all of these illnesses in the first place.  His swelling in the brain should now be under control gven we are halfway through radiation, so his doctors finally felt comfortable with taking this important step toward his recovery.  I am so excited. 

I cried a bit while I was home today, just looking at Ty's place on the couch and wishing things were different.  Gavin, who is not even 2 years old, got on his tippy toes, pulled down a box of tissues from the counter, and handed me a tissue.  I smiled, he smiled, then he walked away saying "MaMa".  It was so beautiful.  Maybe that says something about the person he is going to become as a result of all of this.  Strong, supportive, sweet and loving.  I love him so much and I miss him beyond words during these long stretches in the hospital. 

For those who have asked about whether or not the radiation is working yet, we were told that there's really no way of knowing until after it is completed.  In fact, the results aren't expected to peak until 3 months after his therapy is over.  The best way to tell is by his clinical behavior/improvement.  Unfortunately, that is hindered due to his infection, but I can say this... Before we began radiation, Ty's tumor was growing rapidly and causing a lot of neurological issues.  Those issues have subsided, so at the very least we can say that the tumor is not growing and the radiation (in that respect) is working.  It's no use scanning him at this point to look at the tumor because it is too difficult to decifer between living tissue and dying tissue, tumor inflammation versus tumor growth, etc.  We just have to be patient which is the hardest part of all. 

Thank you for keeping track of Ty's progress.  Our sweet baby Ty!  Here he is in early 2010 after a good nap.  That's some of the best bed head I've ever seen.  Makes me laugh.

XOXO Love Ty