2nd day of Feeding Rehab

I've been a slacker! Once we got home from Albuquerque, I didn't feel well. Thankfully Grandma Reba was in town to watch the boys so I could get some rest. I'm pretty sure I have strep throat, but I will find out at my appt at 1pm today!

So we had a breakfast and a lunch appt with each Stefanie and Valerie separately. I voiced my concerns about our appt with the neuro, and both of them right away told me that I was correct in thinking something wasn't quite right. They said it was really uncommon for anyone to have a negative response to any provider at UNM. I generally agree with that, we've had nothing but amazing providers in the last year that we've been seeing doctors there. She said that any pedi, ST (speech therapist), OT (occupational therapist) and especially a Neuro would see that something wasn't quite right with Pacen's movement and muscle tone. Valerie said she is going to have a Developmental Ped try to come to our next feeding rehab appt to help us get into the right direction. She said that the Carrie Tingley Hospital has a fabulous Developmental Ped on staff. I love that hospital. I also trust the therapy people a lot more than a doctor that flicked his arms and legs to check for reflexes and dismissed my concerns about everything else. The therapy girls spend more time with him and know how he is. Valerie had noted in Pacen's file already about his odd muscle tones throughout his body and jokingly said "he is a stiff little booger!" That he is.

The two separate therapy appts went ok. I am pretty sure that the therapy days kind of stress Pace out. He didn't take his formula well at all, which usually we don't have an issue getting him to drink around 16-18 oz per day. He worked on oral motor skills with chewy tubes (tubes that he bites on to work his jaw muscles, since he has weakness there) and some water play for a little fun. He tried out the full body swing and felt quite uneasy about it so we will try it again next month. Our goals for this month are for him to sit for 10ish minutes, and take bites off of larger pieces of food. Also to drink from a straw at mid line, which is directly in front of him without tilting his head to the side and letting gravity do all of the work. I know that does not seem like much to accomplish, but we will be lucky if we can get him to sit for 10 min and even touch certain foods.