Food? Amelie loves her food however we have a big problem at the moment with breakfast, no matter what we give her in the morning she is refluxing for up to 4 hours after it. We have tried all breakfast things, we have changed her milk back to Soya Milk, gave her fruit instead of wheat based food, brown and white toast, sausage, bacon (She doesn't like eggs)... We have tried so many things and still she keeps puking. Really don't know what to do? We have found that Croissants go down well so maybe that would be fine? Very high in fat but she has lost some weight... And a little update on this situation it hasn't gotten any better! I think a phone call to Dr.N maybe in sight!
She said to me the other day "me some" while looking at my lunch and then "bit" when looking at her crisps! She has been really trying to make new sounds with her mouth, saying "Hu", "hat". Although this isn't good enough for her health visitor who told me they aren't real words.... This coming from a woman who can't seem to google Rett Syndrome to stop herself asking me stupid questions like "Any words yet?" No joke she asked me again yesterday when she ran into me in the doctors! I mean WTF??? Oh well Amelie is doing amazing stuff and anything she keeps during regression will most likely stay for good, maybe the fish oils are working!!! She ended up going for her 2 year developmental??? I know! Stupid, and the PHN asked was she kicking a ball, building blocks and also was she able to play make believe? When I promptly answered no Kiki got annoyed like she understood we were being negative about her, she I turned her around to look at me and I said to her don't worry Amelie, you are doing just great and you are fab! She looked at me put her head on my chest and said "aww". The little mite xxxx
After a few weeks of watching her becoming more and more reliant on mouthing to sooth her I began to start worrying. Amelie has always mouthed her hair but it had become very aggressive, so much that she was causing a bald patch on her right hand side, her beautiful curls were causing her to self harm again. After agonizing for a few weeks, and asking all the other parents of Rett kids on FB I decided the best thing I could do was cut her hair! So on Wednesday of last week I asked my sister to get her an appointment at her hairdresser's and we did it! Her lovely long hair has gone! She has been sheared, she has a little pixie hair cut now. You can really see her features now too, but I do miss her lovely hair but I don't miss the constant mouthing!
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| Amelie's beautiful hair before |
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| Amelie at the hairdressers |
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| Amelie just after her haircut. No more curls :( |
Halloween was also on in the past week, Amelie enjoyed the food but I don't think she really liked all the darkness and candles. She wore a witches dress but as it was very cold and damp we decided that she should stay at home rather than go Trick or Treating. She loved the Halloween decorations so I am betting she is going to love Christmas!!!
She said to me the other day "me some" while looking at my lunch and then "bit" when looking at her crisps! She has been really trying to make new sounds with her mouth, saying "Hu", "hat". Although this isn't good enough for her health visitor who told me they aren't real words.... This coming from a woman who can't seem to google Rett Syndrome to stop herself asking me stupid questions like "Any words yet?" No joke she asked me again yesterday when she ran into me in the doctors! I mean WTF??? Oh well Amelie is doing amazing stuff and anything she keeps during regression will most likely stay for good, maybe the fish oils are working!!! She ended up going for her 2 year developmental??? I know! Stupid, and the PHN asked was she kicking a ball, building blocks and also was she able to play make believe? When I promptly answered no Kiki got annoyed like she understood we were being negative about her, she I turned her around to look at me and I said to her don't worry Amelie, you are doing just great and you are fab! She looked at me put her head on my chest and said "aww". The little mite xxxx
Halloween was also on in the past week, Amelie enjoyed the food but I don't think she really liked all the darkness and candles. She wore a witches dress but as it was very cold and damp we decided that she should stay at home rather than go Trick or Treating. She loved the Halloween decorations so I am betting she is going to love Christmas!!!
Wow! New sounds are so exciting!! Good for both of you. She is SO adorable in her new hair cut, and the good thing about hair..it GROWS! So maybe by the time her curls come back she'll have outgrown the habit. Oh, BTW that "health visitor" is an idiot. Just ask her to stop asking and if she doesn't, ask for a new one.
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