well we have five new diagnosis at our house. Our Ben has been diagnosed with FAS(fetal alcohol sundrome). We always knew he functioned a lot lower than the others but didn't see the facial features of FAS. Andre, who I see the facial features of FAS got a diagnosis of FASD (fetal alcohol spectrum disorder) as well as reactive attachment disorder(RAD). Ethan who is very slight, but doesn't otherwise appear to have a lot of the bodily features of FAS, was diagnosed with static encephalopathy and autism. None of these were a huge surprise. This will help in getting them appropriate services at school and in the community but does not really change our lives drastically at home. and none of the new diagnosis were a surprise. I am still somewhat struggling with what this alphabet soup means for us. Will they be completely dependent forever? I want to tell people hey my kid has ___ when they do things associated with their disabilities. but I always hold back. I struggle with myob(mind your own business) and educating people. I don't want to be a poster family, I really just want to live our life but people tend to be nosy and judgemental. I need to work on stepping back and saying who cares what any of them think. It isn't as if their opinion of me matters. Well anyways that's where we are.
Ben needs a surgery on his hand for his amc. Sophie is needing a different surgery on her arm. but I cant get them to call me back to schedule it. Getting a little angry about that. Been calling for two weeks. I get no callback. I wanted to do it early in June but the way things are going who knows when we will get a call back and actually schedule. I have two different surgeons and two different kids. I arranged for my mother in law to come with us and want to try and do both kids in one week. I was looking forward to a summer at home on the farm NOT IN PHILLY. might get that yet in the form of no surgery since they wont return our calls. very annoying.
Sophie and Jaeger have been sick this week. Sophie is finally better and off to school today. Jaeger was still sick this morning. I took her to therapy yesterday as she wanted to go but she was grumpy and uncooperative. We tried out her new ride. its way too small. have to order a bigger one. Looks very comfy though for her. It is hot pink and she loves it. it was just too tight of a squeeze and the foot extentsion was at maximum already. it would never last the 5 years a mobility device is supposed to last before insurance will pay for another. It wouldn't last a month. She had no room to move because it was so tight side to side. no room to grow at feet. head already at top of stroller. It is a convaid rodeo tilt. niiiiice ride. she aid its comfy. she looked comfy. it folds flat like a stroller. it isn't really heavier than her wheelchair. it has adjustable handlebar for pushing. This will be great so kids can push and eric and I can both be comfortable pushing. basket for jacket, canopy so she wont burn. She is so fair she burns in the shade. So now the wait is on for the new one. meanwhile we are making do with her wheelchair that is way too small.
its snowing again. I cant stand more snow! ugh! better go check on the chickens. or chicken as the case may be.