Been a while...

Let's see...

Cardio...Miles is doing well cardiac wise. His next check up is in February. He gets tired alot but I am not sure if that is behavioral or heart stuff. His fingertips are red all the time but who knows...that could be marker!

Neuro...He has not had a seizure since June which rocks! We missed our appt with neuro this last time and weren't able to reschedule til the spring. We are holding steady with 10mls BID which seems to work very well for him. One thing he does do is fake staring off which bugs the heck out of me!

eye stuff...It still does it but I don't notice it as much. The eye doc says it IS 4th cranial nerve palsy eventhough it does not show on the MRI. We just watch it and make sure that his head tilt doesn't get worse and follow up with the doc.

Renal...We are officially OFF of the BP meds!!! His BP was holding pretty steady on the meds so we did a trial off of them and we have not gone back on them. I have spot checked his BP from time to time and it has been a little crazy so we are keeping an eye on it, taking it once a day. The doc was a little concerned with the 112/95 but mostly we get 116/66 or somewhere around there.

We are all swine flu and reg flu vaccinated and staying healthy - mostly thanks to his breathing treatments and inhaler. As long as we stay on a rigid schedule he does very well!

Riley is doing great in 2nd grade! He got all A's and is playing the recorder. His birthday is next week on the 20th...I can't believe he will be 8yrs old! wow!

My dad's birthday is this saturday...our first one without him. I miss him so much!

I think we are all ok on all other fronts except Miles' behavior! Geez he has been a handful! We are working on that though.