This was originally going to be a gift for one of my Sister-in-Laws, however it's not really her style and I am going to attempt another for her. When I told her this, she told me it was fine for her, but I convinced her that she doesn't have pink or shabby in her home. She couldn't argue with that. :) I am going to list it on ebay and hopefully make a bit of money on it... anything will help with all the medical expenses we are racking up.
The Great news is that Ashlyn is gaining weight. She is 67 pounds now and on the 20th percentile on the growth chart. Higher than she has been in over two years. The goal is to get her up to the 25th and have her maintain it then they will remove the ng tube once this can happen. For now we have cut her nightly feeds down to about 11.5 hours. She is getting about 1750 calories via the tube feeds at night and we are trying the best we can to get her about 1000 calories in food intake daily. Not so easy when you have to avoid peanuts, tree nuts and sesame seeds. This places limits on snacks and we have to read labels for everything. It's shocking what actually contains peanuts, or is produced in a facility that uses nuts.
She started PT this week and begins counseling in about a week and a half. Still waiting for OT and ST. Baby steps.
We're doing aobut 3-4 hours of school each day now and slowly making progress there. Another bonus to doing virtual school- she is not losing anything by not attending school- she will still get to do all the work required for the grade level, as this is a 100% completion program. She will not complete 5th grade this year, We aren't even at the semester mark for many subjects, but we have until July 31st to complete as much as we can, so that is what we will do. She will have to start next year at 5th grade, then work a little harder to complete all of 6th as well. By then she'll be feeling stronger, and she is a determined and hard working young lady. I have faith that things will all work out. :) Extra patience will be needed on my part. lol
It's been raining here the past few days with a lot more in the forecast. Perfect weather to hunker down and scrap- which I have been doing slowly. Priorities first. ;)