Keep Calm and Cure Kiki

Wow it has been a really long time since I have updated Kiki's blog!! To tell you the truth I have been trying to get myself fit for our first major fundraiser that is coming up on 3rd June, the Dublin Flora Women's Mini Marathon. It was real slow going at the start and I thought that we would never get anyone to do it with us, but I have have to say that I have been really blown away by all the support from the surrounding communities. I would say the Tobii will be a sure thing before the end of Summer! Yeahhhh!!! We have had so much help and generosity, Firstly we were contacted by the local Hound Racer Club that they would like to do a sponsored Dog Walk in aid of The Cure Kiki Fund, it is to be held on 8th June. The Local Slimming World Group here in Cootehill have just wound up a sponsored 6 weeks slim and all proceeds are going to Amelie's eyegaze trust.  The staff of the Holy Family School, where Stephen works, has set up a Race night on the 10th May in aid of Cure Kiki and the kids of the school have decided to do a non uniform day in aid of her too! Drumgoon Football Club have also arranged a quiz night on the 31st May in aid of Amelie. We are totally overwhelmed by this and has made life alot easier for us by taking away the "begging" aspect of fundraising that I really don't enjoy! SO a massive thank you from us to you. xxx

Also I wanted to say a huge thank you to Cootehill Credit Union who have sponsored our fundraising efforts by donating the money for our T-shirts for the Mini Marathon. the pictures to the left and right will be the ones used on said shirts and not only are they supporting us in our endeavour but 3 staff members have also decided to join us, So thank you.




Pheww!!! Tired? I know I am! HA! Now over to Amelie and how she is doing. We were back with Dr.Nick recently and she has dropped a kg since Christmas, but he isn't too worried about her weight (13.7kgs) but has decided to ask for help in the reflux situation. How ever since I saw him 2 weeks ago I hve noticed that Amelie has been able to keep down sparkling water??!!! I know, why that? But sure if it works and she is managing to drink it and use the toilet regularly then so be it! We have also noticed a hump on her back and when Dr.N was examining it he agreed that it did seem like a scoliosis curve so sent her for an X-ray. We are still waiting on the results, but he did tell us not to panic as she is so mobile that it may not progress. Fingers crossed and we will be talking to a private physio therapist to work on her back too.

On another front the discrimination against Kiki continues, this time she way rejected for her Primary Medical Certificate, which would allow us to be able to by a car that would be adapted to her needs, like a swivel seat, VAT free. But in their own words "that she didn't meat the criteria bring that she has to be so disabled that she is wholly without the use of both her legs and hands"!!! WTF Have they ever met a child with Rett Syndrome? Well actually I know they did because EVERY other girl with RS in Ireland has this certificate. We did appeal and with a little help from our local TD Heather Humpries we are being seen next week 2nd May for a medical review, but they will probably turn her down because she is mobile, but she isn't mobile enough to walk outside properly and she isn't able to walk to the car or to her hands with purpose. But we shall see!!! If they do turn us down I will be asking them to distribute that Cure that they have obviously found! LOL

The next few weeks are going to be busy as our eldest Scarlett is getting her 1st Holy Communion next week which takes a lot of prep. Also I start a Hanen Course for Speech and Language on Wednesday! HA, I am not looking forward to that. We are also looking to move but we are waiting to hear word on that so fingers crossed on that front too!