Last weekend we went down the coast to spend the weekend with granny, grandpa, uncle Raymond and cousin Alex. You know being a mom of a special needs child, it's hard when they get together with other kids their age or younger and you can see the difference in "age" where they are mentally and developmentally behind. Alex is such a lovely boy, he is 6 months younger than Jason. I was actually blown away by how well they got along together and the amazing thing is how kids don't actually notice the difference. They don't notice that the other kid is behind, that he doesn't eat and doesn't talk much. They accept it, they actually communicate with each other in their own way and this is exactly what happened when Alex and Jason got together. They totally understood each other and could communicate and play with each other beautifully. Alex saw me feeding Jason but that too, he accepted it. Asked questions like "what am I doing" when feeding Jason but when we told him he totally understood and accepted it. Said things like "I drink my milk with my bottle". Too cute! When Jason gagged and coughed he said "shame Jason is sick". It was really cute to see. Anyway my point is this weekend was lovely. It was hard seeing how well Alex eats and how intelligent he is but seriously that is "normal". And another thing I did learn was that Jason is not as "behind" as we think. The amount of things that he did and picked up was amazing. I think a lot of the time we underestimate him!!! He is capable of a lot more things than we give him credit for. I think because he is "special" we sometimes treat him like he is "special", which is wrong.
The cute little things that Jason comes out with are starting to show. Like when a child just learns to communicate - the little comments and words that come out! Well finally we are starting to see progress with words and even understanding what he is saying now. In the mornings he loves to shower with mommy or daddy and mention that word "shower" off goes the shirt, pants and nappy and he runs around the house butt naked putting his clothes in the wash and nappy in the bin shouting "shower" "shower" "shower".
When I decided to test him on his words this morning I held up his spider man shirt testing him expecting him to say "shirt". Well when I held up his shirt and said to him "what is this" he shouted "Spider Man!!" Was too cute!!
So we have noticed big differences and changes in Jason. Feeding wise we are managing 150mls every 2 and a half hours during the day and at night he is on the feeding pump. So we are managing 1200mls a day which is great. I say great because my plan is to get all his calories in and I have added calojoule powder to his feeds to add calories so we are ready for December to take away his day feeds and start our second tube wean attempt. I know he is ready and I really feel in my heart that it's time. He wants to eat, he understands that he should eat with his mouth. He just doesn't have enough "motivation" in terms of "hunger" to want to eat. So December it's time!! I have a good feeling about this and know that we will get progress!! My little man is going to eat, I can feel it!!
Therapy is going well. He absolutely loves OT. He has still been very quiet as the therapist said because of him not feeling well but he is managing to do the exercises that he is told to do and he loves doing it. Unfortunately we missed speech again last week but tomorrow I am sure we will make therapy. I want to get as much therapy in that he needs because seriously it is making the "world of difference" for him. I can see such positive changes and amazing progress and don't feel it would be possible without the extra therapy that he gets. In the afternoons I spend time doing puzzles, threading, reading books and all activities that are "fun" but learning at the same time.
So lots of positive things happening in the Long household. Our little man is doing so well and growing up!!
I would love to hear from those of you that are following Jason's website still. I know I have been slack with the updates and don't do them as frequently as I would like to but I would love to see who is still following the blog updates. Please leave a comment if you can!!!