This blog is dedicated to my baby daughter Amelie Kiki and her courageous fight against Rett Syndrome. What is Rett Syndrome? Imagine the symptoms of; Autism, Cerebral Palsey, Parkinson's, Epilepsy and Anxiety disorders all rolled into one little girl. Now imagine the pain of seeing your beautiful baby girl slowly slipping away before your very eyes.
Sunday, 21 October 2012
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
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