Heyy from hospital! So had a good chat with Amys pediatrician (she is amazing) A few things; 1) NG pump feeds now being tested. Pump being ordered for us to arrive by tuesday from abbott. Hopefully controlling the speed will help with the reflux and also enable us to have freer hands ie distraction during feeds/holding her. Also the omeprazole has gone up again. 2) Behavioural stuff: Once feeding/reflux is a bit more under control they think some behavioural therapy is needed. Amy needs to be held ALL the time. We think this is because she cannot hold toys/do things for herself and is constantly wanting us to show her new things. (Btw I love that she is sensory seeking). It is sad she cant soothe/entertain herself, but work needs to do be done to show her its okay to sit in a chair and watch things etc as well as have lots of cuddles. 3) Respite. They want to organise perhaps a day where amy can go to a respite center so we can have some down time/get things done time. During feeds and after etc etc she needs us constantly and it is very tiring. I hate the thought of sending her somewhere to be looked after but the positives are that she will see new toys and things, it will be a bit like a nursery, we get to sit on the sofa (lol we dont at all when shes here!) and a few other things. So yeah. Everyone is working hard to make sure she is a happier little girly. we now look forward to getting this horrible gastrostomy over with!
Posted on: Sun, 24 Aug 2014 14:22:59 +0000
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