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?

Daddy and Amelie in Smiths Strand, County Fermanagh

Amelie with her princess sisters and mummy.

The warrior princess Amelie Kiki

Amelie and Piglet partying it out!

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. 

Amelie really liked Pluto 

Having fun on the rides

Enjoying the sun at the Hotel New York

Mummy and her girls

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 ;)

Amelie getting assessed in hospitalFeeling worse 

Unhappy birthday

feeling a little better

first day of preschool

meeting the Irish women's rugby team

Enjoying the sensory area

                   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.

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.

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!

STOP PRESS!

Well it has been a few weeks since our last post, Amélie has been doing ok. Her walking is getting stronger, we have been trying her outside but she is still unsure and goes down on her knees if in doubt. She got her Piedro Boots the other day and after 6 months waiting, when I got her to the hospital they went the pink ones we were supposed to get but bloody ugly Navy ones, and look like a boys boot! Ugh! What can you say? Budget cuts!

Well last week I registered for the Flora Women's Mini Marathon in Dublin, hopefully more people will volunteer to do the race for us and this will begin the fundraising effort for her Tobi eyegazer. I have a few ideas of what I would like to achieve this year and this is only the first, so Kiki has been helping me get fit too over the last few weeks, we have been going for a daily 9km walk and she has been really enjoying them, she has even begun to pay more attention to the animals we come across. I can't wait for her to get back to horse riding again to see if she acts differently towards the horse now.....

We were contacted last week by a journalist from our local paper who wanted to do a story on our fundraising effort, I said yeah and they sent a photographer around to take some photos which turned our quite well (apart from me being in them lol), it will be out tomorrow and hopefully more people will be educated about Rett Syndrome. Awareness is key to finding the reversal to this nightmare and THIS WILL HAPPEN!............. It has to.

The Loss

Sometimes the reality is so hard, my beautiful baby girl has this nasty, debilitating, life sucking syndrome and people outside the circle just don't "get" it! For the first time in a long time I cried about it, and the unfairness of it all. As I was downstairs tonight I just looked at a photo of Grace when she was just about 10 months old, she is staring at the camera and is smiling for me, she knows what to do when I tell her smile. Amelie is 26 months old and can't do this simple command. She smiles when Retts allows her, she say's the odd word when Retts allows, she eats her food without getting sick after when Retts allows her, and if Retts allows her she MAY live until she is 40? Who knows? Can you even imagine what it is like to look at your other kids baby pictures, something that used to bring you so much joy, and cry in pain? Pain caused by the knowledge that you will NEVER see your little girl smile in that way, that she will NEVER have the same opportunities as her sisters, that her life will be filled with some amount of physical and almost certainly a lot of emotional pain? Can you imagine hearing your 6 year old saying that when her mummy and daddy dies that she will be the one looking after her sister and smiling about it? We are again grieving for another lost future, after we lost our son we never once imagined that kind of pain would visit our home again, and surely to God 24 months later like some sick joke July brought his usual gift of gut wrenching pain. People constantly tell us that they will support us, but the only people doing that are doing so are our families, a few close friends (very few) and our internet family, the Rett family, those parents who know our pain, who know the fight and the pure love these girls have in them. People don't seem to get that Amelie, for a want of a different word (any word,) is a child with a limit on her life, we live everyday in the knowledge that she could die suddenly and maybe some think this is dramatic but hey you know what? We have spoken to and grieved with parents whose girls (and boys) were doing great and who all of a sudden just got sick and died. We live with the knowledge that there is a cure close to hand but also in the knowledge that is maybe too late in coming for many of our girls. I also have come to the realisation that Amelie is just too precious to share with people who can't/won't take her special needs into consideration. When I, her mother, make certain requests to maintain her health and I find they are being ignored, I am now going to take that as a sign that people can't be bothered to support or care about her and will be cut from our lives, it is a privilege to know her and to be in her presence and from now on only those worthy of her can interact with her. I am sick to my back teeth of people making me second guess myself and whether I am handling this "stuff" properly. I know I am usually so much more upbeat but hey when people make you question yourself the mask begins to slip. Today my mask is off and I am grieving tonight, I am sure that tomorrow will be a new day and again I will put my mask back on but for tonight I am a mother who is utterly heartbroken.

New Year New Amelie?

It's with apprehension that I write this but as of New years Eve Amelie's reflux has gone! We have been trying her on different foods, drink and her new special milk, and since Monday it has all stayed down??? Now I don't want to jinx it but we are so happy and Amelie is like a different child. She is so happy this week, she seems more contented and more relaxed cooing and gabbling away to herself but also holding eye contact and looking into our eyes. Long may this last, please God. She had her first appointment this week with her Neurologist Prof.K, and all in all it was a positive appointment. She kept asking it we were sure that Kiki had RS, and we told her yes as her genetic test even came back with her mutation, she also was taken aback when she heard that Amelie followed simple instructions like "Go get your ball". She asked us were we really sure that she was REALLY going for the ball, and as we explained to her that the object would have to be VERY familiar to her but yes she could go and play with that item. She also said that she was very impressed with her walking skills, she said that in her career (She is in her 60s) that she has seen about 40 girls with RS and in her honest opinion she had never seen a girl learn (having never previously walked) to walk so well at such a young age (young for a rett girl). She thought she was great on her feet and believed that her walking could be a sign of a good prognosis. SOOO happy with that :) Finally some good news.


So seeing as this is the first post of 2013, I want to lay out some plans we have for the year ahead and if anybody thinks they can help in anyway just leave a comment.

So here goes;
We still have Amelie's My Charity page still open and would like anyone who wishes to donate to Rett Syndrome Ireland in her name please do so on this link: http://www.mycharity.ie/event/curekiki

Also this year will see the establishment of The Cure Kiki Trust fund, the money we raise will go towards a Tobi Eyegazer for Amelie and so alternative therapies to keep her supple and healthy. Also we will be donating money to Rett Syndrome Ireland who will split it up and send some to RSRT UK for research.

We are currently in the early planning stages of an Over 30s/non-professional mixed teams Gaelic Football tournament. We are aiming to host it Sunday September 9th 2013 as it will be Amelie's 3rd birthday and we thought it would be very fitting. We will be looking for non-playing men and woman over 30 from the Cootehill area to participate and we will be looking for team to take part. We will be inviting teams from the Cavan, Monaghan and Fermanagh area to join us in raising some much need money and also some much needed awareness. It will be a great competition and great days fun after a Summer of getting ready for it!

We have also been contacted by a local artist who (in my opinion) is by far the coolest person I know! She has offered to do something in Kiki's name to raise funds for her. This woman is so thoughtful and kind and as a mother to 4 smallish (?!) kids is so generous in giving her time up to even think about our girl. Anything this woman (who's name will be revealed once she gives me the go ahead) will be a great success and will bring some much need awareness to this part of the country. I can't wait!!!!

Also this year will see me enter my first Mini marathon, The Women's Flora Mini Marathon, I will be doing it for Cure Kiki and I will be looking for women to join me. Online Entry begins on 18th February so watch this space when I hound you all about joining me in this.

There are a few other small projects in the pipeline like a storybook with all the proceeds going to Cure Kiki too but we have to see how that goes. So all in all a big year ahead for us and I am sure a great year ahead for the death of RS!

We also hope to squeeze a trip to Disneyland Paris into the Summer, a new car and the chance of a mortgage into the year. Am I asking for much? Yes! But do my girls deserve it? YES!

And just before I go, I wish to leave you with a piece from FB (sorry if you already read it on my FB page) that was written by an unknown author:



I am wearing a pair of shoes. They aren't pretty shoes… uncomfortable shoes. Each day I wear them. Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yet, I continue to wear them and continue my journey....I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.... To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them. But, once you put them on, you can never take them off.

...I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No Mom deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a Mom who has a child with special needs. I will forever walk in these shoes.

Reflux and food = puke!

Hey all sorry it has been so long, it has been a difficult couple of weeks. Unfortunately Amélie's reflux took a nasty turn for the worst and we really have been having a hard time with it. She was back with Dr.N on Monday past and we were explaining to him that there wasn't any type of dairy that she can handle. Those medicines listed in the last post seemed to be making her worse as well, so he said he wanted to try her on this supplemented non dairy or protein milk. So the next day I gave her the milk..... 1½ozs later and she was puking! She went to see Santa about an hour later and began puking so badly that we had to leave and she was in the shower for about 2 hours! We put her in the shower when she is getting sick as it calms her down and washes the sick away stopping her mouthing it, making her puke more! We have been going through her diet with a fine tooth comb and have been able to settle her sick if we stick to the following; White toast with margarine (butter makes her sick), pastas with oil, potatoes of any type as long as the sick is off, carrots, green beans, peas, chicken, fish fingers, white fish, mince, chilli, rice, water with a little diluted juice. And that is basically all! Hard ain't it? She still takes her fish oils in her horlicks drinks but now it is made with water not soya milk. She lost ½ a kilo in a month so we are now concerned with her growth but I am starting her on a food supplement in the morning so that she is getting all her vitamins and minerals because she ain't getting them from her food!

Anyway on to the big day at hand, Christmas. She loved Santa, I couldn't believe that she liked him, so much so she gave him an 'awww' which in Kiki's language is love. She really took to him and now when she sees him on TV or in a book she just stares and smiles. She hasn't paid hardly any attention to the Christmas tree and hasn't attempted to pull it down or even touch it really, I can't wait to see her face on Christmas morning!

AND on a final note she had her trial with the Tobi eyegazer last week. All I have to say is it was magical watching her make her own choices. We will be fund raising for this in the new year so would appreciate keeping us in mind when it comes around to that time, and on that I want to wish you a very merry Christmas and a fantastic new year, keep hoping and praying for that cure to come! Xxx