Update

We are almost done with all our yearly Doctors appointments. Everyone seems pretty happy with Billy Boy's over all health. The Rehabilitation Specialist is scheduling an appointment with the Orthopedic Specialist for next week. She seems to think something will be done about his dislocated hip, taking in two main factors; Billy Boy is in pain and Billy Boy (unlike most handicap children) was ambulatory two years ago and has developed hip sockets (like normal people.) Hopefully she is correct so he can enjoy the benefits he gains from standing up in his stander (without crying), but the Orthopedic Specialist will be the last to determine all that.

Monet has been busy. School is back in full swing. She is also rehearsing to be in the Christmas presentation at church. Cheerleading should be starting up soon too. We do our best to keep her busy.

Billy (Dad) is still mountain biking all around (and up and down some crazy hills) and I am back to walking again.

The waiting game

We are still waiting for the referral to see an Orthopedic Specialist. CCS said we should have it this week, but who knows. We have seen the Pulmonologist, Gastrointerologist, & Neurologist in the last week. We still need to see the Orthotics place this week, and the Rehabilitation Specialist next week. I have to meet with Social Security next week too. Next month we see his Oncologist & his regular Pediatrician, then we should be clear for at least six moths on one appointment and one year on all the others. Oh, I forgot the Orthopedic, hopefully that will happen soon as well.

I neeed to take Monet to see her pediatrician too. Billy Boy takes up so much time and energy, that I tend to put off the rest for later. I need to start working on us too. I wish I had more energy, I need to start working out again. Ugh!

Painful nights

Billy Boy is still in a lot of pain at night. The stander makes it so much worse, the physical therapist would like us to continue using it, but she isn't here at night and I can't watch him suffer. Nights have been awful for him, so I'm keeping optimistic that the Orthopedic specialist will want to do something about it. If that doesn't work, then I will involve Palliative care to make sure his pain needs are met. We are still waiting for a referal, so I'm praying it will take place soon and that he gets some relief.

This is the month of all his annual appointments, so we have two appointments per week for the next few weeks. This week we see the pulmonologist and gastrointerologist.

Work is going good so far.

Monet is back in school and doing well.

Disappointed

Well, I'm a little disappointed. We found out today that chances are, they will leave his dislocated hip alone. In other words, it will stay dislocated. They may provide us with braces so it doesn't get any worse, but unfortunately this is it. He used to love the stander, now it makes him cry. His legs were always fairly loose, now they are tight. Just doesn't seem fair, my poor baby has gone through so much pain and suffering in his short life. It doesn't make sense.