Arrr I hate teeth grinding!

I will mention this again.... I HATE teeth grinding!!! Only a week ago myself and Stephen were just saying that we hadn't heard Amelie grinding her teeth in a long time, she must have heard us because that is all she is doing!! Ohhhh its maddening. She is also mouthing her hair so much more too. She pulls her hair out constantly and mouths its... It stinks! Soooo anyway back to how she is doing. Well she went to her OC on Monday and is doing good, but her grinding is a problem so I was told to order chew toys for her, so when she feels the need to grind stick this tube in her gob and she can chew on it. We were discussing her pushchair and she suggested that we maybe look into getting her one with better feet support, if we wanted we could get MF (her OC) to get her one, but as I said to her that I really didn't want one that LOOK crappy so she then suggested that we buy one.... €700????? Ermmm Our Mclaren will do for the now! ha... I have ordered her a load of sensory toys, balls and noisy things from a shop called ThinkingToys.ie so this week has been a real reality check that she has special needs... Boooo.... (Like I had forgotten) ha. Her sisters helped put her to bed a few time this week (Oh holy mother of God)... Fun!! Not! Lots of screaming and fighting ha she did fall to sleep though. A Speech and Language therapist came into our mother and toddler group last week and I could have smacked her. She didn't mean to be ignorant but started to yap on about what a child WOULD be doing at aged 2 etc.. I told her my child had Retts and she looked through me! I could have boxed her! I need to grow a thicker skin I think. I have also been looking at prices for our trip to Italy next year, and now wondering about travel insurance for a kid with SN, bet that won't be cheap. So the next few days sees horse riding, trips to Navan and Dublin and hopefully her toys come this week. A bit of a slow one this week but hopefully her stepping will get better, (which she has been doing more and more) and she gets over her cold soon. Keep up the good work darling and we will keep hoping for a cure. x

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/

OCTOBER A month of AWARENESS

October is Rett Syndrome and Baby loss awareness month here in Ireland. As most of you know I have lost my only son Liam to Stilllbirth and would really like to bring light to the issue that it can happen to anyone, so always be vigilant during pregnancy and remember those who have suffered this great loss and no longer have their children with them. (See A Little Lifetime) Also That my daughter HAS Rett Syndrome but she isn't defined by it. Yes she may not be able to talk full sentences (hardly any words), her hands are not always of use to her, and she may not be able to walk YET! But she is still cheeky, she is still chatty, she has a mean sense of humour and we haven't lost her to Rett Syndrome and someday she will tell you "I told you so"! See http://www.rettsyndrome.ie and www.RSRT.org A Reversal is near..........