Completely Untethered!

Alistair had another big day today! He started the morning off by getting his NG tube pulled...well he pulled it himself with a bit of help in the end by his nurse! Thank goodness, that thing has been SO annoying to deal with and having it not in the way makes life so much easier. Alistair had to meet a fluid intake goal for the past 2 days as well as take all his meds orally last night and this morning. No problem, give the dude something more challenging! So we can now see his entire handsome face!

                

He also has been talking more and more. It isn't always so clear, but he is tenacious and will resort to getting his alphabet board if need be, but has more often than not got us to understand what he is saying. This morning when he woke up, he smiled and pointed at the TV. I said, "what do you say in the morning?" He said, "Can I watch TV?" I said, "No, what do you say to someone after you get up in the morning?" He said, "Good Morning, Mommy! Hey, I am getting clearer and clearer everyday!" He is so awesome! Gillian came this afternoon (thanks again Suzanne!) after camp to hang out with us through the afternoon and evening and she was so excited so hear her brother talking more. She was so great with him today. She really has jumped in to learning his way of communicating and helping understand his needs. She was super patient with him playing Wii and helping hold the remote and push buttons...she even went so far as to lose on purpose and I am not sure Alistair caught on as she isn't great at Wii to begin with! The best part was watching them together laying in his bed watching some videos on the iPad. He has a wiley arm that goes up and down and could easily get her in the face. She just dodges it and doesn't seem to let it bother her. Or she helps him get it down if he needs it. She is so sweet with him and patient. I think him talking more today has made her excited about having her brother come back to her. All of this is so huge to her and understanding it has been difficult. I think she was afraid he wasn't the brother she knows. But I think she sees now that he is and wants to help get him better so he can come home.  

                         

Another milestone that is quickly getting met is toileting. Without too much detail, this has been an issue for him to this point. We have to help him transfer to the toilet, but he is getting more regular use of the bathroom facilities! One more thing to check off the list! He can also use the shower chair in his bathroom, so no more going to the one down the hall. All these things are happening because he is getting stronger through his legs and can stand and move his feet a little, with help. He can also sit on surfaces and help scoot himself. The more he does this, the stronger he will get. Soon he will be doing more standing exercises that will lead to taking steps and balancing. He moves through all of this with such quick succession, he is such a hard worker.

We had our family conference yesterday. It went well and they had nothing but great things to say about Alistair's continued progress and upward momentum. They have set a tentative discharge date for mid-September, but it is a soft date. If he continues to make headway and there is further he can go and more gains to be made, they will keep him longer. In addition to how the child does, they also look at family fatigue and function. We have such great support through our friends, family and neighbors that we can handle whatever they decide. The idea of living this split up life for another month or so is not exciting, but we can suck it up to benefit our child. I think we have shown to this point that we will do anything we need to help him. Sleeping in a hospital room isn't hard, it's just annoying! 

Hank, the therapy dog! Alistair is on the list for any and all dogs! :)

Seth and I have made the realization recently that we haven't had sad days for a while. I can't remember the last time I had to choke back tears or compose myself. He says he hasn't had to psyche himself up or put on a happy face to go in. We both are feeling cautiously optimistic about the future. I think Alistair is proving that he is going to get past all this nonsense and go back to how things were, and with a better heart! I don't want to get too ahead of myself. I have made concessions in my mind that if things don't fully recover, that I hope we get to a certain point. I, of course, want him to fully recover. But I am also trying to be realistic so that I am not disappointed and anything beyond my expectations is a great and happy bonus. Alistair is the toughest and bravest kid I know, he can do anything and I believe he will!