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.

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.

Hair today, Gone tomorrow!

Food? Amelie loves her food however we have a big problem at the moment with breakfast, no matter what we give her in the morning she is refluxing for up to 4 hours after it. We have tried all breakfast things, we have changed her milk back to Soya Milk, gave her fruit instead of wheat based food, brown and white toast, sausage, bacon (She doesn't like eggs)... We have tried so many things and still she keeps puking. Really don't know what to do? We have found that Croissants go down well so maybe that would be fine? Very high in fat but she has lost some weight... And a little update on this situation it hasn't gotten any better! I think a phone call to Dr.N maybe in sight!

She said to me the other day "me some" while looking at my lunch and then "bit" when looking at her crisps! She has been really trying to make new sounds with her mouth, saying "Hu", "hat". Although this isn't good enough for her health visitor who told me they aren't real words.... This coming from a woman who can't seem to google Rett Syndrome to stop herself asking me stupid questions like "Any words yet?" No joke she asked me again yesterday when she ran into me in the doctors! I mean WTF??? Oh well Amelie is doing amazing stuff and anything she keeps during regression will most likely stay for good, maybe the fish oils are working!!! She ended up going for her 2 year developmental??? I know! Stupid, and the PHN asked was she kicking a ball, building blocks and also was she able to play make believe? When I promptly answered no Kiki got annoyed like she understood we were being negative about her, she I turned her around to look at me and I said to her don't worry Amelie, you are doing just great and you are fab! She looked at me put her head on my chest and said "aww". The little mite xxxx

After a few weeks of watching her becoming more and more reliant on mouthing to sooth her I began to start worrying. Amelie has always mouthed her hair but it had become very aggressive, so much that she was causing a bald patch on her right hand side, her beautiful curls were causing her to self harm again. After agonizing for a few weeks, and asking all the other parents of Rett kids on FB I decided the best thing I could do was cut her hair! So on Wednesday of last week I asked my sister to get her an appointment at her hairdresser's and we did it! Her lovely long hair has gone! She has been sheared, she has a little pixie hair cut now. You can really see her features now too, but I do miss her lovely hair but I don't miss the constant mouthing!

Amelie's beautiful hair before

Amelie at the hairdressers 

Amelie just after her haircut. No more curls :(

Halloween was also on in the past week, Amelie enjoyed the food but I don't think she really liked all the darkness and candles. She wore a witches dress but as it was very cold and damp we decided that she should stay at home rather than go Trick or Treating. She loved the Halloween decorations so I am betting she is going to love Christmas!!!

Missing in Action!

Hey all sorry we have been gone for two weeks, thinks got very busy there! Well the big news first, Miss Kiki took her first steps yesterday Sunday 7th October 2012 at 4.20pm, and I missed them! HA! But Stephen was here and witnessed them. Then all evening she spent her time going into standing position in the middle of the floor, something she has NEVER done and trying to step! She did two steps for me then, we were SOOOO excited... Long time coming!
We spent the weekend in Athlone at  The Rett Syndrome of Ireland's Family Weekend. We had a nice time (when the two bigger girls weren't driving us bananas). We learned a lot there. We learned that Amelie has Vacant Episodes due to Retts and not epilepsy which was a MASSIVE relief. We also met with a Speech and Language therapist who specialises in Retts, she gave us some great pointers and some good ideas on how to communicate with Amelie. We also met Rachael Bloom another Rett mum but also an advocate to all the parents in regards to all the research being done at the moment. It really does give parents hope! The rest of the weekend was a chance for us to meet up with other parents and their daughters, the was one little girl there who was walking great, talking in full sentences, I honestly didn't think that she Rett's until later on when I noticed her pushchair, and over heard her folks talking. I was just amazed. While there we all got to hold the Sam Maguire (Gaelic Football Cup the All Ireland winners get), the McCarthy Cup (Hurling Cup that the All Ireland winners get) and the Heiniken Cup ( the Rugby cup).... Well Stephen was well happy! :-)

Amelie went swimming in the hotel's hydro swimming pool, and LOVED it! So I think we have discovered that Amelie is a snob and doesn't like public swimming pools! haha No in all honesty I think she doesn't like the acoustics and sheer size of public swimming pools, so we may have to keep attending these types of pools, lucky there is one in the Cavan Crystal hotel.

We did get her to Horse-riding two weeks ago, but the weather has been crappy so haven't had her back, but I plan on getting her out this week. She loved it, she hugged Buttons (the horse) looked all around her and just really enjoyed herself. She only did it for about 15mins but it wacked her out.

She has also continued her adventures on the toilet. Every time we put her on it she does something, the other day in the hotel she went number 2 BIG TIME! (Sorry too much info haha) she we put her in the bath with the girls, and there was lots of laughing coming from the bathroom, when all of a sudden I heard Grace shouting "she's pooed"!!! Scarlett was saying "no she hasn't"......... "Arrrrr, yes she has"! We ran in to find poo in the big bath! haha.... And Stephen found himself back at work! Teehee Only messing Stephen! But I swear I then nearly wet myself watching the girls on the side of the bath like Jaws was in the bath! hahaha....

Amelie was also given Jack and Jill hours this week, where the Jack and Jill Foundation pay for a career for 4 hours a week to help with care for Amelie. This may not sound like a lot, but really it is huge and will give Amelie some great play time with her carer. So a big two weeks all in all, lets hope that we have some photo's of Kiki walking this week and pray for her continued progress...

http://www.jackandjill.ie/

I'm Still Standing

Over the past week Amelie has been really trying to stand herself. On Saturday she stood for 4 seconds all by herself!!! Now that may not sound like a lot to normal parents however this is a HUGE milestone for her, and ever since she has been really trying to do it again, everytime she is standing she is pushing away from the thing she is holding onto to try and test the water! I really believe that she will be walking by Christmas! Oh talking about Christmas (yeah I know you love it! LOL) we have decided on her presents for this year, again this may sound like no big deal but buying for a child with Rett's is no easy task, there is a lot of depressive thoughts about how she should be able to do this and that, and how she doesn't need anything because she can't play with anything etc, however we have decided and thankfully it seems like it maybe a nice time this year! ANYWAY, back to this week, we went to mother and toddler group where she demanded crackers and then fell asleep! Like ALWAYS haha. We then went to the Cootehill Fair Day, it was busy and cold, but Kiki really liked looking around although she wanted out, and started to try and take her straps off. We let her walk holding our hands, she is getting so strong holding one hand now, the wee mite. She isn't self harming as much and her routine is very good too, she is in great form. I know she is falling over when in sitting position, but only when tired, she is really happy, only 1 out of seven days maybe a bit off. I will take that! I have been chatting alot to other parents via FB and god does that help alot, the support is just great and especially when you get chatting to parents of girls Amelie's age it is good to know you are not alone (if you know what I mean). Well I hope that Kiki's good week keeps on into this week. Thanks to all those that voted on www.rsrt.org/vote. Votes close tomorrow 19th Sep. We didn't beat the dog but if we educated anyone on Rett's that's a result. See you next week.

Birthday Girl

So I have decided to keep this a weekly thing unless something dramatic happens. So what happened over the past week with little Miss Amelie Kiki? Well the last week has been good with her, she has been verbal and has really begun taken an interest in her toys. When I hold her right hand she has begun taking steps without the other hand needing guidance and her steps are really lovely, little steps close together not a wide gait like they used to be. For her birthday we bought her some Peppa Pig night clothes, some little cardboard books and we also got her a Peppa Pig toddler bed, bedding and curtains, which she loves. She has been doing great in the bed, hardly any accidents but to honest I think her head is made out of concrete anyway!!! hahaha!!!! On Saturday we had a little party for her with just family there but she did find it a bit too much, so was very quiet, and it was sad that for her 2nd Birthday she didn't receive any toys (she just has what she needs, no need to waste money on things she won't use). But she was happy and enjoyed some alone time in the afternoon up in her new bedroom. She had a lovely cake bought by her Auntie J, but Auntie G couldn't be there, but she did have lots of company and enjoyed food time (as per usual) haha. Today she is over to Enable Ireland for a session but to be honest she seems so determined to do things herself we barely have to do it all with her. So I have put up a load of pictures of her from this last week because she looks so cute in all of them, hope you enjoy.... PS could you please click on the link and vote for the RSRT to win $250,000 for research www.rsrt.org/vote thanks again