Ben and donuts have always had a love affair, but when he was diagnosed with an egg allergy a few years ago the love affair came to a screeching hault.
A month or so ago we got the go ahead from his allergist to schedule a food challenge. A food challenge is done at the hospital (in this case at CHOP). And basically you go in and they give the child increasing amounts of the allergic food and see if the child reacts. If the child reacts they are still allergic and if they don't react they are no longer allergic.
Ben passed without a hitch. Not even a sneeze. So Ben is now food allergy FREE!!!!! Amazing! So Cla ran out this morning for celebratory donuts. And Ben loved it as if they had never been parted!
Anna, on the other hand, took a few sprinkles off her donut and one tiny nibble before she decided she was done. I will never understand that girl's eating preferences. Carrot? Absolutely!! Donut? No thanks. In a non-bizarro world this would be fantastic, but in the world of Failure To Thrive it is MADDENING!!
As well as she did during therapy several factors have lead us to be Feeding School drop outs! A few major factors being our new insurance doesn't cover Behavioral Health Services at CHOP, I was having some major disagreements with the feeding team at follow ups in terms of the direction of Anna's care, and doing separate "bite" sessions with Anna when I had a new baby, a house on the market, and a 4yr old, and, and, and, and seemed just this side of impossible.
So what does that mean for Anna and her eating?? I really don't know. We have to struggle for every bite basically. She is just sort of, usually, hanging on by a thread in terms of maintaining her weight WITHOUT tube feeds (something she couldn't do before therapy). I think her GI put it best a few months ago when he pointed out how very far she has come in the two years he had been seeing her and that this will likely always be a struggle for her, but that we ALL have shortcomings that we need to compensate for and with age and maturity she will learn to deal with it. Her tube remains in for now. She would likely be one stomach bug away from tube feedings, but then again she has ways of surprising us! Meanwhile she is a full of life 3yr old!
We are just about to start our 4th week of school. Ben is doing great and if Anna was a little less of a loose canon things would REALLY be going smoothly. She is a big distraction. Insisting on doing school with us, but not wanting to do anything planned. I am torn between laying down the law and making her do that crafts and little alphabet activities I prepare for her and just letting her flit about as she will. If she is going to be so difficult why should I waste time planning for it?? LOL
The only area Ben has struggled with in school is Religion. Basically the curriculum calls for me to read him sections of the Golden Children's Bible and then the next day he is to retell me the story and I write it out and then he illustrates it. He had such a hard time with the recall part of this. I am not sure if the subject matter was boring, the language/vocab too advanced, the concept itself too much for a 4yr old or what. So we just dropped the religion and instead we are just focusing on Catholic Treasure Box stories/activities and saint stories and picture books etc. So far this is much better. We will either revisit it in the summer as an extra or just skip it and that is that.
Things are moving ahead with our move. The house is a disaster as things get pulled out to be packed and shuffled around and nothing can really be put AWAY. There are boxes everywhere. Stacked towers. We have just over a month until closing and the amount that needs to get done is mind boggling. I just want it to get done and for us to own our new house and for this house to belong to its new family and that is that.
So first day went very well! I started ON Labor Day because my inflexibility wouldn't allow me to start on any day but a Monday. LOL...but I figured it would only be an hour or so of school so what's the difference.
A few quick pictures before we sat down for school.
And since it was Labor Day and Claudio had off from work after school we took an impromptu jaunt to the beach!
It was a gray, drizzly day so the beach was mostly empty and we just ran around and played for a few hours before stopping for ice cream and heading home.
Beatrice is always happy to smile for the camera but actually she was very frightened of the ocean! I thought for sure she would crawl into the ocean with abandon...guess not!
Ben and Anna liked to dance in the sand and see their foot prints.
Little Buggy stayed with me looking cute. It was very very windy for her so she was happy with her hood up on a blanket where it was safe.
And so Ben is upstairs getting dressed and we are about to start day 2 :)
Tomorrow we are going up to Pennsylvania to put a bid in on a house. Prayers it all goes well and our offer is accepted.
