Over the past week, Jack traveled to Springfield once for feeding therapy, and St. Louis Children's twice for clinic appointments. Grandma came along for all of the appointments.
But first, there was a Speech Therapy appointment. It went very well. I loved watching Jack work so well with his therapist. He did so many different concepts-play with toy dishes and utensils, feed the baby, look at pictures, point to pictures, communication via recording device. . .
Pediatric Surgery for the mic-key button coming out 3 times. The button fits great! No need for a change. There's a chance that the buttons were part of the product line that was manufactured wrong. We talked about the GI problems and the Dr. mentioned about slowing down the rate/hr, so I did. We also talked about the possibility of a GJ tube (Gastrostomy Jejunostomy tube-the feeding tube passes through the stomach directly into the intestines). The Dr. said this was not recommended because it might make the some of Jack's problems worse. Good to hear.
Feeding Therapy was unsuccessful. Jack has finally stumped the feeding therapist. She said she would be contacting the feeding team to discuss Jack. I'm supposed to get a call from her with any ideas on what may help Jack gain interest in food once again.
The neurology appointment went very well. Jack's CoQ10 has been doubled. The neuro is thinking that Jack may be having GI, Behavioral, Feeding, and muscle difficulties right now because he needs more CoQ10 in his system. His dose was based on 6kg, and now Jack is 8kg. We're doubling Jack's CoQ10. I'm expecting to see changes within a week. I just started the new dose this morning. The autistic tendencies: The neuro said that he didn't see how Jack could also have Autism. I agree. Jack does some odd things, but he doesn't fit into the category of Autism Spectrum Disorder very well. He has Global Developmental Delay, which we already know. Jack performed some new skills during the evaluation. Yippee.

We had Developmental Therapy this morning. Jack worked hard.
He'll have Speech Therapy again on Friday.
Occupational Therapy was canceled today. I'm sick. I have whatever Jason had. I'm not in the bad stage yet, but it's coming on fast. Jack's pediatrician just called me. She just got back from maternity leave and was concerned about the multiple notes on Jack. She read about the button problems, weight problems, nutritionist problems, odd fears, etc. He'll be getting weighed in a couple of weeks. The pediatrician isn't happy with Jack's recent weight issues. Evelyn has gymnastics tonight and dance tomorrow night. Grandma, Evelyn, Jack, and I went to church Sunday. We didn't stay too long. Jack did his screaming thing again. I wish I could find a way to let him enjoy church and the music, without acting like it hurts his ears.