Monday 9 December 2013

Catch up time!

So it's now December and alot has happened. Where to start?


July
So in July Ireland had a little heatwave and Amelie got to enjoy a tranquil, country summer. We spent many days playing in the garden and in the paddling pool, evenings eating outside and walking with Amelie down the lane to the church, a couple of trips to the water had to be had too! It was a lovely break in the chaos that usually ensues us in July. Also in July we went to the Jack and Jill Foundations Childrens Party in Dublin where the kids dressed as princesses, It was a fantastic day however it did start off with a bump as you can see in the photo's. Two of the symptoms of Rett Syndrome are dyspraxia  and hypertonia, therefore her balance can be iffy somedays especially when tired. Well on this day she thought it would be a good idea to climb up onto the back of the sofa lose her balance and smash her head on the side of the tiled windowsill. It wasn't a good idea and she landed in A&E and got a couple of paper stitches. She now has a little scar there, but sure doesn't every child have war wounds?



















August

In August we went on our holidays, wee all jetted off to Disneyland Paris. We had been there in the October before her diagnosis and loved it so decided to go back during the Summer. It was AMAZING, we stayed in the Hotel New York which was very close to the entrance to the park and because of Kiki's disabilities we were given a special pass to use the disabled entrance of the ride. Well to say we had fun is an understatement. But more importantly Amelie just found the whole thing unbelieveable, I can safely say she came home a different child, more relaxed, engaged, focused and happy. 






September

September had a dodgy start, Amelie took an infection on her left thumb and because of her inability to keep liquids down she had to be kept in for 6 days on antibiotics. It was a though time, they had to keep trying to get veins to get a line in her and take bloods but her veins were so small due to her dehydration that they had to to keep doing it over and over again. She was doing very well over the first 3 days however she did take on a secondary infection of Croup whilst there therefore she had to get a nebuliser. All this was happening and her birthday fell during this period, a cake was being made by Yummy Cakes by Alan through the charity Bake a Smile Ireland, Dr.N. said we could take her home for a little while to have her little party, however she was so ill we had to cut it short and bring her back early. Such a shame really. September also saw Amelie begin Preschool, she joined 23 other kids in a regular preschool, where she has a 1:1 SNA. So far she loves it, she plays with the other kids and interacts with their games and has plenty of friends. The Rett Syndrome Ireland family weekend was held in September, we had a lovely weekend meeting the other girls and hearing lots about the research and how it is going, where the scientists are with it all etc. We got to meet the Irish Womens Rugby team too, they were a lovely bunch, maybe not as pleasing to the eye as the Irish men's rugby team ;)




first day of preschool













                   October


October brought us Amelie's Tobii eyegaze system, after months of relentless fundraising by the good people of Cootehill and beyond (including one friend doing the Athens marathon) we made a grand total of over €18,000 with some to still come in. We have looked at sensory areas and will be ordering one in the New Year and we ordered the Tobii and it arrived within a couple of weeks. Amelie began the task of learning how to focus..... Lets say it is still a work in progress LOL...... Halloween came and of course we dressed Kiki up like the Demon she is she was adorable, good enough to EAT nom, nom, nom.........




                             Halloween fun







November and Now


November was thankfully quiet and saw us work at Kiki's therapies, she won't work very well at home but she does work at her sessions however these sessions are few and far between, budget cuts always affect the most weak, and the weakest of our society being special needs children.... We are now looking forward to Christmas and with any luck the good work Amelie has done will continue into the new year.


I will update before the new year and post pictures of Amelie as the "star" in her nativity and also her Christmas morning pics...... Merry Christmas if I don't get on here before then and thanks for reading.

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