It's still not his turn and other news

It's already February. Some how this happens. As I awoke today at 6 am, I found myself with a solid chunk of time to myself, which is rare and I thought I would share other random things with you.

Some of you have casually asked me about Grant as of lately. I am deeply touched any time someone asks me how Grant is or if it's his turn because it shows you care. Thank you.

KKI is not ready to take Grant. I am assuming it will still be at least another 6 months or MORE for it to be his turn. being his turn. You will know when he leaves. I will tell you. It will be not be a secret. I think that when they call, it will be this sort of thing. Leave now. It will not be a call now and then we wait another 6 months. We have everything ready in the sense of their paperwork, his medical stuff, etc. We can't do anything else to make it is his turn. We are ready. They only have 16 beds. This takes time. I really won't have any new news until it's his turn.

When that happens I imagine myself frantically making arrangements. Plane tickets, luggage bags, and I think he has some blood work that he has to do immediately. I imagine the phone calls and arrangements we have to make in MD. It will be move into action and I am actually hoping at this point it won't be during the school year to take one thing off of my plate.

Grant is doing OK. I mean just that. He is not great and he's not as bad as it has been. His g-tube works fine. He survives 99% on formula (pediasure 1.5) and sometimes takes in a bite or 2 of food in a day. Some days more, most days about that. He still struggles greatly with actually swallowing food. Sometimes we see his "little devil" come out and he will whip the food item across the house. Reminder to self - clean green jello out of carpet.

Sometimes he will drink fluids, but not really and it has a lot of unique twists that make it hard to do this. It's all behavior. We have opted to not do traditional feeding therapy. It's too hard to get to appointments in Mpls and not sure it will help. We are going with the gift of time and patience. I don't know if this issue is a phase or a life-long issue. I don't care like I did this summer. He is thriving. He is about 74 pounds and about 4'7. He is doing fine with his actual health.

We have introduced a new med this past few weeks. It's a stimulant. We have tried this before once or twice. We are doing this again with a new dr. She has a different theory and we are giving it time even though it's not a med that needs time to see if it will work or not. Each day is so different, we all struggle to see if it's helping.

About 2 days ago, him and I played play-dough together. We haven't done that in YEARS. Yesterday he sat down and played with his letter toy independently. Again, we haven't seen that in so long...there wasn't words. So maybe it is helping? We up'ed it yesterday. I am excited about these changes. These things are huge in our world. Typically Grant is either watching his Ipad or running back and forth. It makes me sad to say this is his world unless someone makes him do something else. After all of these years, we have adapted to his limited interests, but that doesn't mean we are happy or like it.

Lately we have been very housebound. His interest in shopping is not like it used to be. For years he enjoyed the experience of getting a or pushing a cart. But, now his disinterest in wearing shoes trumps his interest in shopping. He no longer wants anything to be purchased for him (we have gone through a myriad of stages of things he wanted - bananas, fruit snacks, notebooks, paints, pop, scissors, and word whammers). Now there is really nothing so we struggle to get him out. Sometimes when we are out he screams at top volume, making it socially challenging and obviously he's stressed. Good times.

We also struggle to have people over. He seems to hate adult conversations at any unhealthy level and if it's not nearly 100% focused on him; he will make it about him in a very unappealing way. I don't feel good about constantly leaving Scott to the caregiver role, so if you haven't seen me socially for awhile it's not by choice, but trying to accommodate Grant. Yes, it makes us resentful, tired and bored. We do the best we can.