Two Months? Now really Pamela this is getting shoddy!!! :) Well Summer has come and gone in little ole Ireland here and it is only June!! HA But all are holding out that it will return one day soon.

During the last two months an awful lot has changed. Amelie has the beginnings of Scoliosis one of the more horrible symptoms of Rett Syndrome. Back in January Stephen noticed a lump in Kiki's back but because we were so concerned about her reflux and eating problems we just held out on mentioning it to Dr.N, but at our last clinic I brought the subject up and they sent her for an x-ray, and it confirmed that she did indeed have a slight curve on her upper spine. Now this has baffled both her doctors and her therapists as her mobility should be hampering scoliosis however is isn't. Personally I believe it is a balance issue as Kiki often loses her balance and falls over, she also must have had very low muscle tone on her left hand side as she has always leaned to that side and without the ability to self correct her posture the scoliosis has set in, but with a lot of hard work and a little luck maybe it won't progress. Also this past couple of months we moved home!! YEAHHHH finally in the country, we have an ideal setting, our closest neighbours are dead (we live near a graveyard), the girls have so much freedom and they can even put Amelie in the pushchair and take her for walks. They all have a room each and Amelie even has a playroom with Peppa Pig on tap! She adores living here and has really started to come into her own, although we always have to remember that whatever Rett allows Amelie to gain it tries to take away. She has begun to approach new words and sounds but we have noticed that she has become a little more unsteady on her feet, but we don't know weather it is the RS or maybe the flooring of this old house, time will tell. Our car finally had to go to the knackers yard (a little like myself) it broke down on the way to a Jack and Jill Foundation Charity Family Day in Tayto park. We were stuck 90kms from home with the kids for 5 hours and running low on phone battery, it was towed to Dublin where I had to scrap it! I then went and bought another car (thank god for the bank) and as I was leaving Dublin with Kiki in the back, it broke down on the side of the motorway! We still don't know what went wrong but we have been given a loan of a car by the garage and they are paying for the repairs. They believe it is a computer software failure, bloody computer on board cars!!!! Whatever next!! Anyway that is the car sorted for the next 5 years. We are still fighting on the Primary Medical Certificate after being turned down at the appeal hearing, we applied under the freedom of information act for the report to be sent out to us and they said no because of her AGE??? Madness!.... Anyway our fundraising is going really well, so far we have around €3500 raised and that is only from 5 sponsor cards that have been returned for the Mini marathon, which was an amazing day. May I say well done to everyone involved on the day.

We all did ourselves proud and raised so much awareness for Cure Kiki and Rett Syndrome. Also included in that figure was the money made at the Holy Family Race night for Cure Kiki, thanks again to everyone involved with that successful night. On the 23rd June there is a 10km sponsored walk being held by the Drumgoon Harriers and in conjunction with this, The Cavan Kayak  Run are doing a 80/40 km cycle, all in aid of Cure Kiki. All money is going to be needed as there has been a revisement on the price for the Tobii. There is a new wireless version out and that would be so much better for Amelie. I will update you on how this all goes in the coming weeks, the big girls are finishing school next week, so some more summer fun to look forward too.