More Steps Forward

On Monday Ben got his central line out, proof that chemo really is done and he is one the mend. He wasn't sure how he felt about having something that has been a part of him for over a year suddenly disappear, but Mom and Dad couldn't be happier.

Even though we explained several times that his tummy tube would still be there after the other tube was gone, Ben started crying when he saw Mom bring the feeding bag out and the reality hit that he still had to attached to his tether. That was pretty hard for the Mommy and Daddy hearts to take. But it wasn't all bad. Since Monday, he has been more motivated to eat than he has since this all happened. And that coincides perfectly with our visit to the Dysphagia clinic up at PCMC yesterday. They helped us set up a plan to get Ben off the feeding tube. We have a long road ahead with a lot of baby steps in between, but I am hopeful that a year from now our sweet Ben will be tether free.

Today we are off to the dentist to find out the damage report from all of that vomiting the past year. I'm pretty nervous for what we will find out.

So, we need to have a swallow study, a lot more therapy (especially OT and Feeding Therapy), and many more horse rides ahead of us. We'll be sure to keep you posted.

Lots of love from us to you.