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  1. #101
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    We are still pretty full on right now. E has an appointment with the ENT at her private rooms this week. That will be fun to to be in the city for that then back home for J's hearing appointment in the arvo... So E will probably have day surgery for her grommets in the next month or 2


    Hope Bree is doing Ok Kiz.

    I cant answer your question because both of my kids have SN. I can only suggest that you try to include yuor eldest in as much as possible. Is there any things you do for Bree that he could help with? My DD is only 19 months but she loves helping me do things with the baby.

    Hope everyone is doing well.

  2. #102
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    Hi guys.

    Well Alex's stoma is healing up really nicely. I had that dreaded 'did i do the right thing' a few days ago but it's all good. Im glad she avoided a GA.
    Alex has audiology and ENT on the 4th july, so we're off to brissy (must book Ronnies...) for that soon. Maybe more grommits. They keep putting it off. As she gets older and they cant blame poor audiology results on her moving around and crying as much hahaha.
    Got her IEP (individual education plan) meeting on tomorow. That should be pretty good. DSQ reakon they'll be there to sit in on it but we'll see if they turn up.
    The meeting should clear up a lot about Prep next yr. How the special prep class works and stuff like that.

    Otherwise missy has been good.
    She turns 5 next month and so badly wants a party. Only cause she wants party hats hahaha. So that will be a goer with a few of her EI and kindy friends.

    Oh ****, remind me to call the dietitian! The appointment with her is on the same day as ENT, so not going to happen.

  3. #103
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    Hey Kiz. I dont have any other kids, so its hard for me to imagine.
    But does Bree have a nap during the day? Maybe making that special DS time ?

  4. #104
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    Hey guys

    Hows Bree doing Kieran? I hope shes coming good now, been wondering how u guys are. I haven't got any suggestions on how to include Kai as I only have one but I think what myhusbandswife suggested is a good one. And this might not be the right time for you guys but for us I'm booking in a carer to come a few hours a week to give me a break and look after Ash. We are planning on later this year ttc number 2 and I was thinking it would be also good down the track to give me time just for the other one too. As I also worry I devote so much time to Ash there would be no time left for another. But hopefully we will manage.
    On another note another busy week ahead and lil man has an ear infection (already has glue ear argh!) got physio, feldenkrais therapy and finding out if we will get funding from yooralla for our standing frame.
    Waiting for our ENT appt in August to discuss grommets again- just want to get them sorted now as the glue ear is still there. Hope the weekend has been a good one.

  5. #105
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    I've been making sure I have quality time with Kai lately so he doesn't get jealous of his sister and also to ease my conscience. I feel guilty for the amount of time, effort and money I spend on Bree and I feel like I'm missing out on seeing him grow up because of it.

    What do you do to include your other kids?
    Hi, I wish I had a good answer for this one; it's something I worry about all the time. How old is Kai?

    I think I am lucky in that my big kids are 11 & 13, and I feel they're old enough to understand that we need to spend ALOT of time and energy on the Supergirl, and that it doesn't mean they are any less loved. But I do try to make sure that DH has the Supergirl in another room sometimes, to allow me time with the big kids. And make sure that whenever possible, we fit Supergirl around their activities (sport, ballet, whatever), because they have to fit around her so much. We also talk a lot about things like that, how we are all making adjustments, to allow for each other's activities.

    It's bloody hard though, and as I said I worry a lot about whether I'm getting ti right.

  6. #106
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    Just got home from Alex IEP meeting.
    Her goals are (set by her teachers and ok'd by me and DSQ):
    1. Keeping her tounge in and no drooling - probably wont happen by end of the yr but its a good goal.

    2. Balancing on the balance beam with hands out for balance

    3. Social play - ask a fellow EI student to play with her using specific phrase and visual aids.


    So im ok with that.


    Just booked ronnies (finnally, oops lol) for next month and been to PTS but need to see a gp to get some paperwork done. sigh. as if im not enough of a GP!!

    Thank god tomorow is a kindy day!!!

  7. #107
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    Peta, do they think Alex still needs an extra yr at EI? with the tongue, is it due to low muscle tone? Jake had that. we helped by getting him to blow out candles, blow kisses, fish faces, chchch train etc. all help build up muscles in face. i have 5 yrs between my boys, so mostly jake understood about kane needing more time.

  8. The Following User Says Thank You to suemp For This Useful Post:

    LivinOnAPrayer  (21-06-2011)

  9. #108
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    My son at OT gets a bucket and really long straw with bubble mix and he has to get the bubbles to the top he loves it, he also has a Thomas whistle.

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    LivinOnAPrayer  (21-06-2011)

  11. #109
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    Sue and bel, thanks
    Alex has a stack of whistles and oral motor stuff from DSQ, like a vibrating thingo to chew on and the likes.
    She cant differenciate between coughing and blowing her nose, doesnt understand how to smell things etc. There is deffiante tone issues, she's got hypotonia, maybe its related, or perhaps because she was a late talker and eater?
    But she struggles controling her tounge a lot, like when im trying to brush her teeth, she cant control where her tounge is. She actually uses her hands sometimes to push her tounge back in haha. poor bugger.

    So school are concerned that its going to be a social issue, as well as the speech and laguage side of it.

    I reakon it'll just take some time. She speaks fairly well now, most people can understand the majority of what she's saying (although i still struggle sometimes too, so some sounds are deffiantly not there yet).


    Its kinda funny, because she didnt speak until she was 4 really, now that she's talking im happy with that, and new people are coming in and trying to correct what i think is already just plain awesome haha.

    So i'll just be reminding Alex to put her tounge in, or wipe her chin, or try and teach her exactly what 'swallow' means (she usually coughs if i ask her to swallow hahaha) and hopefully that will help with the muscle control and self awareness.

  12. #110
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    Oh Sue, yeah apparently she's going to be in the special prep, where they wear uniforms and stuff and its actual prep but focused on what the kids need. Then the next yr its plain main******
    Hopefully.

    Alex has absolutly no play skills. Its more and more realised now that other 4-5 yr olds are making 'besties' and playing games together etc. Alex would prefer to sit on her own and watch/stare. So the EI teachers are going to teach her how to engage a friend in a game and hope she learns play skills from there. Its pretty sad really

    So play skills, gross motor (more for safety reasons) and speech and language are whats holding her back.
    And i was suprised to hear she's actually behind in fine motor. We worked so much on fine motor in the early days before she could stand etc. So I thought she'd be age appropriate for that but nope. So EI are teaching her to follow a straight line with a pencil, trying to teach her to draw like stick people, shapes, something other than a squiggle.

    Oh, and she has a problem with answering questions. Like, 'Alex why do you like that?' and she'll just say yes or nod. It's kinda frustrating but Im told its the last early learning language skill learnt. So it'll come.


 

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