Anna has her pre-school check-up with her pulmo-cardiologist today. She had a post-school check up at the beginning of summer. We did not get good news, and I am very frustrated and agitated. I am edgy and cannot sit still or concentrate on much of anything.
Anna has COPD (Chronic Obstructive Pulmonary Disease). She was diagnosed with this at 8 months. Since this we have had our ups and downs. Our ups are the fact that she is out of of the hospital more than she is in. HOORAY!! Also that the meds she is on seem to being doing a good job keeping her symptoms in check. This disease is silent. Although her coughing fits are down and she does a good job keeping up with the kids running around, riding her bike and breaking her leg we go dealt a blow today. Her lung capacity is down to 75%. This is huge blow to me. I don't talk much about Anna's illness on my blog. I think I have only my reference to her illness one other time, but I have all these thoughts roaming through my head and I just need to write them all down.
As of this moment there is nothing more we can do. I have to be very vigilant in making sure she gets her meds on time everyday. Make up a schedule for us to follow at home as well as one for the school to follow. If need be I can set up a medical IEP for her at school that will allow her to be inside for recess during inclimate weather to keep her from getting sick. What worries me is that I have no warning signs she needs an extra boost. When she as an asthma attack she has a coughing fit or wheezes. This lets us know to give her meds. But with diminished lung capacity there is nothing. No outward signs. I could keep her hooked up to her machine all day, but where is the fun in that?
Ben and I will keep pushing her physical activity. That really is our best defense. She is still pretty gun shy on her bike, understandable so, but we will take her on walks and hikes as well as swimming. We have done a lot of swimming this summer because it was good physical therapy for her leg.
She will go back in six months if she stays healthy and have a check up at that time. Our regular Dr. is retiring, he will be missed as we have gotten very attached to him over the years but I have every bit of confidence he is leaving us in good hands.