Update: a more detailed update - James has been doing well. Last night was an off day from the chamber and we had some trouble getting him to bed. He also didnt stay asleep once he did fall asleep. He had a lot of gas all night and couldnt get comfortable. Hopefully he sleeps in this morning. We are really ramping up his swallowing and oral motor skills for the last week. He has been having a session with the Biber protocol daily and doing really well with it! Yesterday he ate 1/2 of a pouch of puréed food! We have been putting more flavors in his mouth as he has gotten use to only having candy therapeutically. Yesterday he enjoyed sucking and chewing on a string bean. We also added pickle juice for the salty flavor. He was always a pickle and olive lover. It seems as if he lost some of his head control but after speaking to his PT, she brought up that a lot of his tone has gone away which was assisting in holding his head up. With the tone diminishing, he can work on his true neck strength. He got a back brace a few weeks ago and we have only been putting it on him every once in a while. Yesterday during PT, he had it on and was able to do so much more with his sitting. It was pretty cool to see what a difference stabilizing his trunk made on all of his extremities. It seems that now that his tone is lowering, the Valium is really effecting him. This is something I am not going to touch for a while. Every time we have lowered his Valium, he takes huge steps back. Still making huge steps forward and we are so proud of him. Now, time to enjoy daddys birthday weekend! #turtlepower 🐢👊 Jenna
Posted on: Sat, 27 Dec 2014 12:47:25 +0000
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