I will not be posting for about a week as I will be leaving town tomorrow night and not returning until sometime on Friday.  I am actually very excited :)  The first half of the week I am going away with my friend to New Orleans!!!!!! Then I will be coming back to pick up Ness to go to Coco Keyes which is an indooor water park. So trying to fit it all in one week.  It is surely time for a getaway for me.  I have to recharge the battery. 

I am hoping Avery is settling down.  Poor kid has NOT been sleeping at night despite all of his regular meds.  I had to call the pallative care team to have some of his meds increase and I don't think even that did the trick.  Believe it or not, tylenol suppositories seem to be working for a couple of hrs.  The reason being is because it is not ingested through his gut which seems to be the problem.  He is just not absorbing his
meds again.  We have stopped all feeds and frankly I think it will be indefinetly.  It is just not worth it.  He is not gaining much from it and quality of life is prime.  I just have to be realistic at this point.  His TPN will be adjusted this week to make up for the feeds he is not get.  This means that he will be 100% dependent of IV nutrition :(

Isaiah had a good week but his blood sugars were a bit wonky today.  I am sure that is to be expected.

I am just hoping nothing crazy happens while I am out of town so that I can enjoy my time away.  I have confidence that the boys will behave.  I had a great day with them today so I am hoping that they will be okay.  I hope everyone has a good week.