Bali Day #6Sleep was great once more .... undisturbed right through to 7am. This was probably due to tiredness (from swimming) plus Painstop. Painstop is primarily analgesic but it also makes Kaylee quite drowsy so although she doesn't really need the pain relief, we make use of the sleepy effect when we have to.Today followed the same pattern ... breakfast followed by swimming .... then some quiet time before we headed off to Galleria in a taxi. We stopped for donuts ............... then Ian & Kaylia went back to Novotel while Naomi stayed to shop. Back at Novotel, it was lunch, quiet time then swimming. Naomi was home by 2pm (after an almost fruitless expedition!!) and Ian then headed off to Hardys to procure vast quatities of "Indocafe" coffee sachets. (This is my favourite and if I take home enough, I can be reminded of Bali for months after. This trip I have 200 sachets. This is 13 boxes .... customs will laugh!)Back at Novotel, it was time for swim number 3!It was room service for tea tonight as we're all tired out ..... I think it will be early to bed!
Bali day #5 It was a great night last night ..... we all had 12 hours sleep after Kaylee had a dose of Painstop in addition to the Melatonin. This morning it was breakfast followed by slee-poo-poo .... and K wanted 'car'! Things are looking up! So we called Wayan and headed off on a longer trip - to Kuta Galeria to visit the famed J.Co Donut shop - the donuts were bliss and K enjoyed the trip ... she was still calm and smiling when we got home. Good!
Back in the room it was more donuts then off to the swimming pool again (#2). Kaylee has a new favourite trick - a variation on the "swings" that she has always loved. This one has her two slaves grasping her arms & legs and propelling her back & forward .... one ... and two .... and t-h-r-e-e! At three she gets a reverse somersault that sends her underwater! .... and she always comes back for more.
About 4pm we went over to Bali Collections again for tea. During tea, Kaylee was really bothered by a crying baby about 3 metres away ... but she kept it together and lasted through the meal. Her response to this stress was to grab my hand on one side and Naomi's on the other .... and hold them tightly over her ears!
Then we went home for another swim .... number 3!
[As I write, Kaylia is trying hard to learn one of Naomi's techno music songs from the iPod ..... she watches mum's mouth & hand motions intently and tries to sing along.]
Bali day #4
Wot a nite version 2! Last night it was awake and noisy! When you're75% asleep and someone is noisy, it is tempting to lapse into anger.
This anxiety stuff is a bugga. I have had a revelation and that is that we are only just 'keeping the lid on' Kaylia's anxiety ... our efforts make it possible for her to cope with the world at this level .... but to cope with such things as the "Kid's Club", the anxiety would need to be much, much lower. My mental image is that we keep her anxiety at about 70-80% whereas a non-auty person would be at about 20-30%. We all have some anxiety ... self-consciousness, worry about finances and so on .... but it is at a level where that doesn't stop our daily functioning. Kaylia (without help) would be stranded in a fog of anxiety. And anxiety at a certain level is functional - we interpret it as concern .... without it we would not care about our families. This thought line was prompted by watching a line of little kids walking along with just a couple of adults guiding them ... and I was trying to imagine Kaylia doing that! Naaaah!
Another idle thought while floating in the pool .... what proportion of hotel guest have an MP3 player of some sort? ..... and what proportion of those are iPods? Earphones seem to be everywhere! No wonder we don't talk .... we all have earphones stuck in the aural orifice!
..... and the number of electronic items close to water! Not too long ago, we'd have all been too wary to take electronics near the pool.
After lunch we went to Bali Collection for icecream again. (Don't dress Kaylee in white when she is about to have chocolate icecream!) Kaylee goes into icecream-zen state and the dregs go anywhere!
Ian & Kaylee had a long swim in the afternoon. (N is worn out from last night.) Fortunately, the pools here have shady spots all over so you don't have to be in the sun while having a swim. Kaylee's behaviour this afternoon has been odd - highly anxious, crying and whimpering from time to time .... she doesn't want to change what she is doing ... but she is not happy. I wish we could find the answer. It'd be great if we could press a button and get a readout ... "XYZ is the problem.... do this ...." I hope she calms down by tonight.
Back in the room and Kaylee is mellow again. We took her off to the Pause Cafe where the staff are getting used to K and her order of "beef bacon,extra crispy". She is completely disinterested in other food at the moment...other than donuts and icecream! It's like her little brain has formed the association that when in Bali, must eat the bacon. She and I are on the couch at the moment eating a mini magnum. I've decided that K would do well on the Atkins Diet!
She still has a hacking cough which could also be part of her ups and downs at the moment. When she came back from the pool she made a point of attaching herself to N then proceeded to ask for the swimming pool. Ian was off having a snooze and after being told "no" she was content to just lie on top of N....with the promise that we'd be going swimming tomorrow.
Right now she has stolen N's iPod and is working her way through N's dance and hip-hop collection. She is the only child we know who can fall asleep with techno on her ear phones, max volume. Must be something about the repetiton & rhythm which is comforting....
Bali day #3
Oooo .... what a night! We were all worn out after a day in the pool and walking so we'd gone to bed fairly early ... but Kaylia woke at midnight and that was it! After a while we gave up and Ian set up the DVD so Kaylee could have some stimmy time .... which she did till 4am! We tried the Melatonin at midnight but it had no effect. We've increased the Lovan to try and counter the anxiety.Despite the high anxiety, Kaylia is enjoying her time here .... she loves the pool time and the one on one mummy time.
This is a much better time than December ... having some strategies to experiment with means that we feel that we have some control.
Midday was a tentative sortie to Bali Collections .... to see how she reacts. A five minute trip with an icecream as a reward is a good test!
Back at APVC, we tried converting the day/night lounge to a bed so Kaylia could have a rest while watching DVD ... but that is not allowed by auty rules! A lounge must stay as a lounge!
Photos have been requested on the blog .... to tell the truth, I haven't had an opportunity to open a shutter yet! (Auty Rules!) .... but I will do so. Good idea.
This the pool area - there are two large pools - one up (on the restaurant level) and another below it. A fish pond surrounds the swimming area. Beautiful gardens ... as one expects in Bali.
After lunch, Ian went exploring along Jn Mengiat nearby and found a 'Diesel' backpack ... this completes his set of Diesel bags - 4 bags from baby size through to the backpack. Then a stop near APVC for a tootie massage (kaki pijat). Very painful process but good afterward!
Afternoon swim (with much jumping from a shoulder stand) followed by tea at the Pause Cafe. Kaylia was so tired she couldn't eat. Then back to the room while Naomi went exploring.
Bali day #2
Kaylia slept well last night (despite a wet bed accident) but her anxiety is not quite right at the moment. She spent most of last night stickng to her mother like glue. Naomi woke up periodically with Kaylee pressed up against her face or Kaylee insisting Naomi hold her while she slept. This is what she does when she is stressed about things. Today she will be sticking close to Naomi again and making sure her "Marty" security blanket is not too far away. "Marty" is Kaylee's name for Naomi, when she forgets to call her "Mummy". Currently Kaylee is enjoying sliding around the floor of the apartment we are in. She has decided it's the coolest place in the house and because the floors are polished she can propell herself along the floor quite quickly. Let's face it....our daughter is a dag!
We were up early today and at breakfast by 7:00. Buffet style so K had 3 serves of her 'beef bacon' followed by 'woggy-mewon'. Then it was 'slee-poo-poo' time and after that some down time before walk. ..... But once again, the dreaded anxiety struck and K was not ready to go out. So Naomi has gone off for an explore along nearby Jalan Mengiat and then to find Hardy's and an appoteck (chemist) while Ian & Kaylee have time with 'dingle dangles' and DVD.
Lunch was at Pause again with delicious drinks & food. Afterward a visit to the nearby Circle-K minimart and then home to enjoy the icecreams. Ian went off to find an Apotik (chemist) for a resupply of Voltaren tablets for the damaged wrist. The taxi driver tried the 'no meter' trick and wasn't happy to have a savvy passenger!
More home relaxing - anxiety is still high with little scream attacks .... fortunately these don't last long but we won't be going out for tea! We learned (on an earlier trip) not to stay in a place that had no room service .... I think it will be room service till we can get the anxiety level down.
Even so, this is a far more pleasant trip than the last .... I can easily envisage coming to this place again .... it suits Kaylia's needs well.
Bali day #1
Happy Birthday Tina! (We both have the same birthday.) Tina took us to the airport bright & early and we had an uneventful pre-flight time. The flight was a dream .... Kaylia played iPods for half the flight .. then just went to sleep! Customs in Denpasar was a breeze with our usual VIP bloke waiting for us .... then it was off to Nusa Dua and book into the Novotel. Our room is huge! I had explained about Kaylia ages ago and they allocated us to a suite designed for disabled visitors!After a settling in swim, we went exploring the resort and found the 'Pause Cafe' - really good for Kaylia - and us! Just the sort of snacks we all like plus delicious milkshakes.Then it was downtime for Kaylia while Ian went for a walk to expore the surrounding streets. This is a really great area to stay! The resort is good and nearby are all the restaurants, markets, spas etc that you could wish for. We'll be back to this place in future I can see.We had hoped that Kaylia would allow us to have a special birthday dinner but it was not to be. The resort has a special 'Rijstaffel' meal tonight and it was beautiful food ... but we had to abort halfway through the main course .... [Get up! Walk!] This sort of instruction is usually indicating high anxiety .... so it is wise not to ignore the warning signs. We 'tested the waters' with a few diversionary tactics but the conclusion was that the night was over .... so we're back in our lovely room enjoying DVDs and books.Thankyou for all the SMS'd birthday wishes.
Well, after decreasing the Risperdal I think there has been a decrease in the headaches so although it is subjective, I think the theory is proved. The mix is not perfect yet but we're getting closer to the right dose. The frustrating thing is that it is difficult to 'get it right' ... and when you do, the success is temporary. Not too long and you're trying to find the right dose again!Kaylia is doing well at school. She really likes being there and if I hang around for too long after we get there, Kaylia starts telling me to go .... 'Bye ..... Bye!' Her reading seems to be good - she recognises words well ... she can't say them well because the messages get mixed up on the way from brain to lips .... but she knows what the words are.We leave for Bali in about 36 hours and Kaylia has it sorted ..... Thursday ... Friday .... Saturday - Bali. On previous trips, I've kept a diary on the computer and this time I'll be able to upload the diary to this blog each day .... I'll enjoy that! (Anyone who doesn't enjoy it ... well you don't have to read it!!).
