Observe;

We finally reached out to a psychologist that was recommended to us that might be a great fit because of our situation and I hope it works because Jordan and I really need it. Things have been pretty steady lately, I have just been observing it all to make sure that I do the best in every situation to meet all his needs. We have never really had an issue with cold weather. That changed this year. We took Jordan to a Christmas event and he had such a tough time because of the cold he was in so much pain we left early and I could tell he was so upset he just wanted to have fun but he was hurting. During the summer we don't sweat we just overheat causing him to have staring spells which are pretty scary so we try our hardest to keep him cool. After our Christmas adventure turned into a bad time we came home and took a warm bath and tried to warm back up but it was really hard to get him back to feeling warm and calm. Jordan really wanted to go to the snow this year and I was planning a whole snow adventure for him but we than talked about how that might not be possible considering how his body is reacting to the cold now and he was sad and really still wants to try but I know it will be hard for him to enjoy. Its simple things like these that Jordan just wants to do and cant and when he realizes it he gets bummed out and it makes me so sad. We are also loosing comprehension. Ive noticed Jordan tells me situations and I give him solutions and he repeats himself and I have to continue to give him the solution. There are also so many things I ask him and he just doesn't know anymore and that makes me sad. I hope that he remembers me forever and that he never forgets how loved he is. There are so many little things that we take for granted that we never think about. Seeing Jay go through all this makes me realize how precious life is. We will continue to make the best of every situation because it's all we can do.

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