something we all take for granted just like our kids walking or smiling. I remember the last time Connor walked completely unassisted, mainly because it was so magical, he had not walked unassisted since the night we came home from the hospital between the 5th and 6th cycle, he got his swingset and walked unassisted inside the fort that was specially made for him at the ground level (it was not something the company normally made but given the situation made an exception), he was so excited he walked it was incredible. Sure he used his cart and tried a step here or there and some cruising inpatient in the hospital, but nothing like that, completely unassisted, out in the open, vulnerable. As for the smile I can’t pinpoint when the exact last one was, it was a slow process, where at first the right side couldn’t do it, then the left, all I know is I have not seen it for over 8 weeks and it is utterly heartbreaking. The use of both hands and holding up his head or controlling any part of his body was also slow and hard to pinpoint an exact day but it has probably been at least a month. All this we could bear because we still had Connor, he was laughing, he was communicating. Over the last week we have seen the laughing or happy sounds start to not be as frequent and in the last 48-72 hours it has become clear talking is getting hard, we have been warned by other parents not talking could and most likely would happen at some point and we have been dreading it. He can still do it and we are trying to soak up every word or sound but this is process is so heartbreaking. Today he went outside for a walk, bubbles and some time on the swingset, from inside I could here happy sounds and his first sentence in three days, Amanda was dramatically blowing bubbles because I told her he loves bubbles and he said “Connor do it” he was just so excited!
This was music to my ears, after he came in he did articulate some requests, “yogurt”, “white couch”, “rocket ships” and “Mickey”, but that’s pretty much it. He has to initiate the “conversation” and if you talk to him it goes a bit like this you look at him, know he is listening because your eyes are communicating, after enough questions he goes to open his mouth, typically nothing comes out, after a while maybe a sound and after a long while and many tries maybe a word. He does better mid day than evening (Casey and I have heard one sound and one word since 5 pm), and does better if he is outside, even though he often protests going out at first. So we will continue to take him out and hope for many more happy sounds.
In regards to the supplement it could have caused some extra drowsiness but not this downturn, this is too much so we will see. We have emailed the doctors about his changes which are all things we have been told to look out for, could have the hospice nurse come in but we have not been using them weekly so not sure they could accurately measure the downturn, so we will wait until Friday to meet with the doctors.