Food rehab & UNM Neuro

Today we had Pacen's first actual feeding rehab appt. His OT, Valerie, and ST, Stefanie, were great! They invited another ST to come and see how Pace eats and drinks. He ate 3 bites of yogurt and 2 pieces of waffle during the appt. Then, there was a lot of bubbles and toys to strengthen his jaw muscles to form a better seal around his sippy cups. They said Pacen has a long road ahead of him to correct his behaviors and teach him how to eat safely. Tomorrow we have 2 more appts where he will work on drinking from a straw midline. He tends to tip his head back and to the left so gravity pulls his formula/juice to the left side of his mouth, once again, eating and drinking to protect his airways. I look forward to his two feeding appts tomorrow! 

We met with Dr Atkinson at UNM Neurology, we went over Pacen's health history. I don't know what she expected of him, but she was taken back by how well he functions for how extensive his history is. She wasn't very much help, she didn't know what to tell me, she thinks an EEG may give us some insight, but it may not. If it doesn't she doesn't want to see Pacen back, if it shows something she will give me a call to make a plan. She didn't seem to care that my toddler loses consciousness and has jerky muscle movements, twitching and continued odd spacing out and strange behaviors. We scheduled the EEG for 8Nov. I figured they would have had that arranged prior to our appt, but I am not fully impressed. 

Tomorrow is another day. 

MJ is having a blast with Grandma Reba, they've been getting to play in the playroom at the hospital Pacen's therapy (also go and rheumatology) appointments are in. And, MJ is just so amazed by hotel breakfast, it's so funny!!