Friday, October 24, 2014

October 24, 2014

It's been a busy week...rehabilitation appts; oncology appts; nuero appts; but he is handling it well. His therapy sessions are going great and he is making a lot of progress! They hope that he can be done with rehab in 6 months or so. We went into see Dr. Rednam this week and accessed his port to flush it out...looking forward to the day we can remove it permanently...its scary that my child gets excited to do the "1-2-3" as he calls it. He makes me look like a big weanie every time they poke him.

We had to make an ER visit to TCH this week as well; he spiked a 101.3 fever so they hooked him up and got his fever down before sending us home. 
Despite all of our appts and such, we got to have a little fun as well...we went to the Houston Dynamo game and were given cleats from Giles Barnes (Soccer Player)! It was so touching to see a big player reach out to him. :) So honored to have so many people who care about him. His battle still isn't over...I know that we will have to worry about the tumor growing again since they were unable to get all of it...its a scary feeling. 
And one last fun fact....Bennett was finally able to go visit the Rice Tennis Team today and see his locker in their new facility! They stocked it full of toys for him and then brought him down to the courts to play for a was the first "outing" he has had to really play outside, so it was nice...but he got fatigued quickly, so we had to take a few breaks to let his body catch up. Even a month after his brain surgery his body is still recovering. As we were leaving the courts today he turned around to the guys and said: "By Tennis Guys....I love you!" Made my heart MELT. He is such a loving little boy. Until next week....-Mommy Nester

Monday, October 13, 2014

October 13, 2014

It's been almost a month since our last we wanted to update everyone. Things are progressing well. He is adapting to his rehabilitation and moving ahead with each session. We are at rehab each week for hours each day, so the days seem long, drives suck, and the time spent there is wearing...but it is all for our little superhero, so it is all worth it.

We also met with Dr. Dauser and Dr. Edmonds; reports from both...

Dr Dauser: Incision looks good, healing nicely; if all progresses as planned, and tumor is NOT growing in December at time of MRI, then we will have Bennett go back to school and continue on a monitoring basis.  If tumor IS growing: begin 5 week radiation course.

Dr. Edmonds: Eyes look better since surgery, eye patch has helped disconjugation; his depth perception is off due to the surgery. If vision is not repaired soon they will do surgery in 6 months to repair his vision. According to his doctor- he has the vision of an 80 year old woman right now.....

Despite our extended hospital stays and appointments...he is doing well....therapy is going well. Blessed. we have had time to visit family and play with friends...

I promise to update more often....have been so overwhelmed with everything. It's hard to make time. But I will. - Mommy Nester