We had a very nice and quiet Thanksgiving. boys did really well, they even tried some food (they were not overly thrilled though). I got up a 4am for Black Friday and finished the majority of my shopping, wooohooo.

Avery has been struggling with his feeds a bit. On thanksgiving, we forgot to turn on his night feeds and he went over 10 hrs without feeds and had a great Friday. So this is leading me to believe that he is up and uncomfortable alot because of his feeds. I have been shutting him off for longer periods but that is not good b/c he dehydrates so quickly. It is a very fine line and he needs so many calories. So I really thing moving forward with the TPN is a great idea at this point. He will still get some food through his j tube but the rest will be through the IV/port his has. He is so very uncomfortable at night so I am really going to push the drs. for getting things started this week. It is just not fair for him to keep being so uncomfortable. Just really hoping this gives him the break he needs. The best case scenario would be he only needs this for a month or two and he can go back to his full feeds.

With mito kids, it is always worrisome that they gut is shutting down. It just makes me very nervous if I am nearing this point. Although I don't think we are there yet. Because there are so many muscles in the gi system, it can be the most suseptible with mito kids due to the muscle weakness. One step at a time is all I can do right now.