Some News but Still Waiting

Since my last update, Jackson has started to master crawling short distances on all fours but gets very tired when he does this. He is learning to stand and perhaps trying to walk a little. He has trouble because he has hypotonia which is low muscle tone and he tries to walk on the edges of his feet or his legs give out. His orthopedic has said that there is nothing structurally wrong with his legs or arms aside from the low tone. We have seen a neurologist on Dr. Oetgen's recommendation. She completely agreed that he is extremely hypotonic. She noted that it was more severe on the left especially when she held his right arm down and it took him at least 1 minute longer to reach to grab with the left hand and he had to be tapped on the arm with the object in order for him to respond to it. She said that his brain may have been formed differently or something similar to that and ordered blood work and and MRI. The blood work came back with a few abnormalities and we will receive the MRI results and an explanation of the bloodwork on Tuesday. Jackson has seen the GI specialist who adjusted the time he was to take his Prevacid  and took him off of the carafate. She said that she believed he could be having internal allergic reactions to milk, lactose, or dairy and put him on a dairy free diet. She ordered an Upper GI and an endoscopy. The Upper GI was negative which is good but we have not had the endoscopy performed yet. We are debating having it done because the vomiting has gotten under control with the new diet and medication. We are hoping to skip the test and go straight to an allergist which would be the next step anyways.
Jackson has begun PT with St. Mary's Infant and Toddler, his new PT Amie is nice but has only seen him twice due to illness. He has also started with Sense Ability Therapy getting PT once a week and OT twice a week. The OT will be working on his hand and food aversions as well as a little bit with his "oral fixation" The PT will continue to help him gain muscle and conquer skills like sitting up from his back, standing to sitting and kneeling properly. They noted not only does he have severe texture aversion he resists hand over hand and manipulation of his left side. He seems to like his new therapists and thinks going to PT is fun but OT is better because we have snacks.
His words are now Daddy, Go, Tickle and a few others. His PT and OT make out a lot of words in his babble but we don't always here them.  He is growing into such a little boy; his toy of choice is his light up music giraffe and he still loves his pillow case blankets. We are currently 2 days bottle free but I don't want jinx it and we are hoping to come off of the toddler formula in July. I will keep you updated.

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