Difficulties!!!

Hey everyone, sorry again about the long absence. Amelie has been a little under the weather lately. Last weekend she had the vomiting bug (which affected both ends :D !) and her refux had become unmanageable.  In an earlier post I mentioned that she couldn't seem to keep different foods down, well it had become ridiculous and over last weekend she was unable to eat anything, she became so weak that she stopped walking over the weekend. Really scary thinking about her losing that ability now that she has gained it. Well on Monday I decided to ring her pediatrician Dr.N, he was very good and slipped her into his clinic that afternoon. He confirmed she had reflux and prescribed her 2.5mls of adult Gaviscon, 1.68mls of Primacine  and 5mls of Omeprazole Suspension and also ordered a Barium test but will cancel it if the meds sort the problem as he doesn't want to give her radiation if it isn't needed. So so far this week she is doing alot better, she had been eating far better and has started to get her strength back, and she is sleeping well again (Thank God).

Last week she was seen by her Physio and he was very impressed with her steps and even said that in all honesty he didn't expect her to be walking by herself this soon due to her muscle tone, so he was delighted, as was I! He suggested we buy her a comfy chair to stop her sitting on the ground and encourage her to get up and walk from sitting position. So I got one from Smyths, as you can see I think you will agree that she really likes it!

She hasn't been doing her horse riding of late as the weather has been a nightmare but she will be getting back to it soon, but she has been going to P's house for her Jack and Jill hours and in those 4 hours I waste my time cleaning the house just so it can be dirtied in about 20 mins of them all being home! I think I need do something better with my time! HA....

Amelie has been sounding out different sounds lately, she is saying the b sound (new), and she is starting to say "down" as well as up. I would love to hear her say mummy, hug or I love you! Maybe someday..........

But before I go I just want you all to remember that although we are living with Kiki's condition we need you remember that her condition can be fatal, only last week we lost another little angel Emma Reilly of Maryland, USA. She was 5, was doing good but took a turn for the worst and died we need to change this. Please watch this video, and remember this is Amelie Kiki McCormack! Thanks. xxx

http://vimeo.com/52749635 Your support is her future.

 (please see www.jackandjill.ie ) 

Hair today, Gone tomorrow!

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!

Amelie's beautiful hair before

Amelie at the hairdressers 

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!!!