Things have been reasonably quiet around here. The sudafed really seems to be helping Avery in terms of him being able to manage his own secretions more by coughing. But it sure does not come without it's issues. Sleep for one. He went from being drowsy with it to not wanting to go to sleep at night. Last night he cried for 3 hrs. which of course resulted in him being suctioned and needing o2. He has actually gone the last few nights without needing oxygen which is such a huge improvement for us. I swear it is like we were given a longer life span. It' not that I feel that it has solved our problems but it surely helps and we are so grateful for it. He is actually starting to be much happy now that he knows he is not getting all kinds of interventions. It's like he is just starting to trust us again. Although he was a wreck today in terms of his spasicity. This is where the Pallative nurse will come in handy though. I just pray that we can continue on this path with him b/c he so deserves it. BTW am and still adjusting to his new haircut. He now looks like such a little boy. NO MORE BABY.

Isaiah is still leaking tons. I am just so unsure about what to do. I don't feel like putting another hole in him is going to solve our issues. I do believe that his motility has slowed down which is to be expected with mitochondrial disease as it takes alot of mitochondrial to move food down your intestinal track. This is why I feel that he is leaking more b/c the food is backing up a bit. So I really don't see how putting another hole with solve this issue. I want some motility testing done to prove it before I even consider surgery for him. The last surgery I consented for him was his fundo which I felt like I was pretty informed although little did I know there was much more to know and this is why Isaiah retches so much now. So I will not do something that will potentially harm him more. My other concern for him is his gut slowing too much and will eventually just shut down meaning there is no way of feeding him except through an IV which would be a complete nightmare. Currently many other mito families are faced with this. I just hope it is not us. So plenty of research to do before I make any decisions for my man.

It is so hard always needing to make these tough decisions for our kiddos. My mind feels like it is so fried at this point. Rick and I are hopefully going to the hotel for some R&R this weekend.

Also the night nurse started and she did fine. I actually had no problems sleeping through the night. We put Avery in the side room off the great room w/ a bed a chair for the nurse. THis works out great b/c we cannot hear her and she has everything she needs. Janessa is also thrilled b/c she gets to sleep upstairs in Avery's bed when he has a nurse. So the whole house sleeps peacefully at least 3-4 nights a week. YAY......