Doctors appointments

Whew, all the appointments are almost over. So far, so good. We met with the Pulmonologist & Oncologist all looks well. Then we met with Cardiology, he is going to be taken off his heart medicine. He was on such a low dose, they don't believe it was doing much anyway. We also met with the Neurologist, that was my most nerve racking appointment. However, he was kind and willing to try new things, and we were pleasantly surprised.

We also met with CCS over his wheelchair, which seems to be a work in progress.

We still need to meet with his Gastrologist and get his splints revised. All in all, everything is going quite well. Billy Boy is content. Monet is happy to be back in school. We are coping with our crazy schedule.

I wanted to mention that one morning as we were heading off to hyperbarics, we stopped to get the mail. I opened a package that came from Harrison Elementary and started crying. Our Dear Mr. Cook sent us a yearbook which the old fourth graders had signed for Billy Boy. Billy Boy really loved his teacher and would of wanted to finish the year out with him. Thank you for thinking of us!

A bit down

We have been a little bit down this week. Someone asked me if it gets easier, dealing with what's happened, and I started to cry. It is so hard to portray the loss we feel. Put yourself in our shoes...would it be hard for you to not talk to your child for over 9 months? Would it be hard to not see him or her smile? Would it be hard to not know if they are in pain, feeling alone, scared or unloved? Would it be hard? Or would it get easier? My son wasn't born like this, nine months ago he could talk, walk, smile, laugh, hug, love.

We have become accustomed to his schedule and our lives revolving around his. We have become accustomed to the fact that we can never leave the house at the same time, or go anywhere together. We have become accustomed to the fact that we have no control over what happens to us, and we have become accustomed to the fact that we live by faith, love, and hope.

We miss our son and the joy he brought to our lives, I don't think that will ever get easier. Will life go on? It always does, but the emotional roller coaster we have been put through, I don't know if it will ever get easier... we'll just have to learn to live with it.

Hyperbarics

School is off and running again. Now Hyperbarics started again, back to the routines. This time around we know what to expect, so it's a little easier. Billy still has his hours all messed up and the medicine they gave him gave him insomnia. We heard of studies that involved Ambien, that awakened people in a vegetative state, so we would like to try that as well. We know with the grace of God something will work. We just have to figure out what that something will be for him.

In a couple of weeks we have appointments with Neurologist, Cardiologist, Oncologist, Pulmonologist & Gastrologist (that covers most of the gist's.) I will keep everyone posted.