Clinc Update for Tasha and Joshua

I had Clinic on 12/7 and it was pretty uneventful. My OT and PT recommended changes to my wheel chair in order to decrease my back pain (from sitting in the chair all day). Dr. Levine and I talked about different pain meds to manage the pain in the event the wheel chair modifications don't help. :) I started joking about the medical marijuana (for those of you not in AZ a bill just passed making it legal in AZ) but my doctor was serious when he said it would be about two months before he could start prescribing it, with my respiratory issues I told him it wouldn't matter anyways because I would be like Clinton and say that I didn't/can't inhale. He assured me that there are many ways though that marijuana could be administered...even through lollipops! I asked Levine for a new time line for life expectancy since his last one put it at this coming February and I'm clearly going to surpass that. He didn't give me another estimate on life expectancy but told me to shoot for February 2012 as my goal. We both know that it's not realistic but it was his way of saying keep pushing my time line out.

Joshua had an appointment with a Gastrointestinal(GI) doctor at Phoenix Children's hospital today. When his Pediatrician originally had us make the appointment it was because Joshua was refusing to eat anything but oatmeal for three weeks. It turned out that he was cutting three teeth and had double ear infections and once on antibiotics he went back to eating like normal. At his two year well check his Pediatrician had us keep the appointment because Joshua has to take a laxative daily in order to prevent severe constipation and this particular GI specialist is really hard to get an appointment with. Basically after four hours of hell the end result is she's recommending he have a colonoscopy to rule out Hirschsprung's disease. Joshua had a biopsy for this in the NICU but she said the biopsy doesn't always reveal mild cases of this syndrome. She also wants him to complete another modified barium swallow which the speech pathologist had already ordered for January. We will see her in two months after the procedures are completed. At that time she is recommending Joshua attend a multidisciplinary feeding clinic. It is similar to my ALS clinic only in this case he will see therapists and Doctors related to his feeding and bowel needs such as a speech therapist or pathologist, an OT, the GI Doctor etc. It's an intensive program that is three days a week for six weeks. She feels that without this kind of approach Joshua may not be eating normally (i.e. table foods) until the age of seven and would risk needing a feeding tube down the road.

On a positive note Joshua is learning a new sign about every four to five days and has started to spontaneously say "all done." He is making alot more sounds and continues to mimic words such as duck, dog, and ball. He is still scooting all over the place and will easily move from the living room to our bedroom at the far end of the hall. This weekend he was with Bob in our room and he scooted out on his own down the hall to Tana's room and sat knocking at her door until she let him in. It was so cute to see him scoot on over to the door and knock and know that he cognitively understood what he was doing and that his sister was behind the closed door. :)