To Pee or Not to Pee? That is the question.

Amelie has lost a few words, we noticed this week, but we are hoping they are just on lay-away and will return again in the near future with any luck :) . So what has happened this week? Well we went to mother and toddler group last Wednesday where Amelie ate all around her (that's my girl :D) She has been really trying with her walking and only holding on with one hand, which is a massive milestone for her. On Saturday we had a family day where we just took a stroll, played some games and watched Dr.Who. Amelie loved watching us playing Hungry Hippos and even got to join in for a little she really enjoyed banging the heck of of it. :) So she was in Enable Ireland today for Physio and her PT thinks she has improved, her knees aren't as bowed and although they still lock, she doesn't do it quite so often. Her ankles are getting stronger and her muscle tone is strengthening. YEAHHHH. She is waiting to see an Ostio about Peidro Boots and maybe a walking frame. But for the moment she is doing good.......... Last night while we waited for the shower to heat I thought that I would try Amelie on the toilet :/ I know! I know! CRAZY.. But she was standing there with nothing on and the toilet was there so I sat her on to see her reaction. I told her to go wee wee if she wanted and then all of a sudden I could see little drops, SHE WAS PEEING! Arrr haha. So then this evening she came into the kitchen with her nappy full as a tick, so while I was changing her I decided to put her on the toilet again, and again she peed! Yeah!!!!! Then just before bed I was changing her nappy and I put her on the toilet to see if she would do it again, and she did another wee wee! Followed by a poo!!!! I nearly died, her daddy and me were sitting there amazed and she looked so proud, leaned over and grabbed the toilet roll!!! HAHA We are going to keep it up seeing as she doesn't hate it! But finally she has done something BEFORE her sisters ever did! Go Kiki xxxx

I'm Still Standing

Over the past week Amelie has been really trying to stand herself. On Saturday she stood for 4 seconds all by herself!!! Now that may not sound like a lot to normal parents however this is a HUGE milestone for her, and ever since she has been really trying to do it again, everytime she is standing she is pushing away from the thing she is holding onto to try and test the water! I really believe that she will be walking by Christmas! Oh talking about Christmas (yeah I know you love it! LOL) we have decided on her presents for this year, again this may sound like no big deal but buying for a child with Rett's is no easy task, there is a lot of depressive thoughts about how she should be able to do this and that, and how she doesn't need anything because she can't play with anything etc, however we have decided and thankfully it seems like it maybe a nice time this year! ANYWAY, back to this week, we went to mother and toddler group where she demanded crackers and then fell asleep! Like ALWAYS haha. We then went to the Cootehill Fair Day, it was busy and cold, but Kiki really liked looking around although she wanted out, and started to try and take her straps off. We let her walk holding our hands, she is getting so strong holding one hand now, the wee mite. She isn't self harming as much and her routine is very good too, she is in great form. I know she is falling over when in sitting position, but only when tired, she is really happy, only 1 out of seven days maybe a bit off. I will take that! I have been chatting alot to other parents via FB and god does that help alot, the support is just great and especially when you get chatting to parents of girls Amelie's age it is good to know you are not alone (if you know what I mean). Well I hope that Kiki's good week keeps on into this week. Thanks to all those that voted on www.rsrt.org/vote. Votes close tomorrow 19th Sep. We didn't beat the dog but if we educated anyone on Rett's that's a result. See you next week.

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 Camel

Whoops I never did get back to update.... Well we went to see Dr.Nick yesterday and he said he was happy enough with her. Her self-harming is a bit of a concern but sure we can't have it all and her skills are good at the moment. He thought she was good at interacting with others and her weight, height and head size are all good. He will see her back in 6 months to observe her, we can go back at any time if we are concerned about breathing, seizures, etc. So feeling a little happy today.... Well I have just pulled her out of the coal box where she just covered her lovely clothes in coal dust arrr, monkey! Thanks to Scarlett Amelie is now spitting like a camel! Urrr And everyone is a target! She seems alot better in herself this morning, long may it last, think I  may take her out for a walk as long as she doesn't spit at every stranger who goes by! LOL

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