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!!!

Missing in Action!

Hey all sorry we have been gone for two weeks, thinks got very busy there! Well the big news first, Miss Kiki took her first steps yesterday Sunday 7th October 2012 at 4.20pm, and I missed them! HA! But Stephen was here and witnessed them. Then all evening she spent her time going into standing position in the middle of the floor, something she has NEVER done and trying to step! She did two steps for me then, we were SOOOO excited... Long time coming!
We spent the weekend in Athlone at  The Rett Syndrome of Ireland's Family Weekend. We had a nice time (when the two bigger girls weren't driving us bananas). We learned a lot there. We learned that Amelie has Vacant Episodes due to Retts and not epilepsy which was a MASSIVE relief. We also met with a Speech and Language therapist who specialises in Retts, she gave us some great pointers and some good ideas on how to communicate with Amelie. We also met Rachael Bloom another Rett mum but also an advocate to all the parents in regards to all the research being done at the moment. It really does give parents hope! The rest of the weekend was a chance for us to meet up with other parents and their daughters, the was one little girl there who was walking great, talking in full sentences, I honestly didn't think that she Rett's until later on when I noticed her pushchair, and over heard her folks talking. I was just amazed. While there we all got to hold the Sam Maguire (Gaelic Football Cup the All Ireland winners get), the McCarthy Cup (Hurling Cup that the All Ireland winners get) and the Heiniken Cup ( the Rugby cup).... Well Stephen was well happy! :-)

Amelie went swimming in the hotel's hydro swimming pool, and LOVED it! So I think we have discovered that Amelie is a snob and doesn't like public swimming pools! haha No in all honesty I think she doesn't like the acoustics and sheer size of public swimming pools, so we may have to keep attending these types of pools, lucky there is one in the Cavan Crystal hotel.

We did get her to Horse-riding two weeks ago, but the weather has been crappy so haven't had her back, but I plan on getting her out this week. She loved it, she hugged Buttons (the horse) looked all around her and just really enjoyed herself. She only did it for about 15mins but it wacked her out.

She has also continued her adventures on the toilet. Every time we put her on it she does something, the other day in the hotel she went number 2 BIG TIME! (Sorry too much info haha) she we put her in the bath with the girls, and there was lots of laughing coming from the bathroom, when all of a sudden I heard Grace shouting "she's pooed"!!! Scarlett was saying "no she hasn't"......... "Arrrrr, yes she has"! We ran in to find poo in the big bath! haha.... And Stephen found himself back at work! Teehee Only messing Stephen! But I swear I then nearly wet myself watching the girls on the side of the bath like Jaws was in the bath! hahaha....

Amelie was also given Jack and Jill hours this week, where the Jack and Jill Foundation pay for a career for 4 hours a week to help with care for Amelie. This may not sound like a lot, but really it is huge and will give Amelie some great play time with her carer. So a big two weeks all in all, lets hope that we have some photo's of Kiki walking this week and pray for her continued progress...

http://www.jackandjill.ie/

Birthday Girl

So I have decided to keep this a weekly thing unless something dramatic happens. So what happened over the past week with little Miss Amelie Kiki? Well the last week has been good with her, she has been verbal and has really begun taken an interest in her toys. When I hold her right hand she has begun taking steps without the other hand needing guidance and her steps are really lovely, little steps close together not a wide gait like they used to be. For her birthday we bought her some Peppa Pig night clothes, some little cardboard books and we also got her a Peppa Pig toddler bed, bedding and curtains, which she loves. She has been doing great in the bed, hardly any accidents but to honest I think her head is made out of concrete anyway!!! hahaha!!!! On Saturday we had a little party for her with just family there but she did find it a bit too much, so was very quiet, and it was sad that for her 2nd Birthday she didn't receive any toys (she just has what she needs, no need to waste money on things she won't use). But she was happy and enjoyed some alone time in the afternoon up in her new bedroom. She had a lovely cake bought by her Auntie J, but Auntie G couldn't be there, but she did have lots of company and enjoyed food time (as per usual) haha. Today she is over to Enable Ireland for a session but to be honest she seems so determined to do things herself we barely have to do it all with her. So I have put up a load of pictures of her from this last week because she looks so cute in all of them, hope you enjoy.... PS could you please click on the link and vote for the RSRT to win $250,000 for research www.rsrt.org/vote thanks again

The Headbanger!

This weekend saw a Charity Drive by Crosskeys Pony Club in aid of Rett Syndrome Ireland and one other charity. We went along as really it was in aid of Amelie as the girl organizing it is a work mate of Stephen, who had thought of Amelie when the group were looking to nominate charities. Unfortunately Amelie woke up on Sunday in really bad form, I hate when she is like this as nothing calms her at all. She is upstairs at the moment because she is tired but because she's in such a bad mood that she is hitting her head of the cot! Grrrr...... It is such a turn around from the past two weeks where she has been a delight kissing us, smiling, singing. It is so typical as we are heading in to see Dr.Nick today, he will only see her NOT co-operating and NOT communicating where she has been doing this! Somehow she has picked up the habit of spitting now and it is getting worse, crazy that she can't get walking but she can gain bad habits???? Anyway just a short post for the time being, I will update it later after we see Dr.Nick see what he has to say.... Till then xx