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  1. #81
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    Oohh AliG, I'm so sorry. U must be struggling atm dealing with the news and the sudden barrage of appts. Stay strong for ur lil one but also try to take some time for urself. U deserve a break sometimes too

    Suemp I think an MRI is useful for showing lesions, matter loss etc, but damage from seizures I think is only seen with an EEG. It was explained to me that ur brain sends electrical msgs. When u have a seizure it fires a lot at once. And from what I understand it can "fry" small areas of the brain. This can be seen by measuring brain waves. When Bree had her infantile spasms she regressed and we were told that it's very common.
    On a side note how silly the school has pre prep but not prep!!


    Sent from my i (couldn't live without it) Phone

  2. #82
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    Default Verbal Dyspraxia :(

    Hello everyone, its so lovely to 'meet' you all. Well I never thought of joining a site like his until yesterday when it seems my beautiful DD (2.5yo) is suspected of having Verbal Dyspraxia. WE ARE DEVASTATED. At the minny our heads are just so full of what her future may hold. Can anybody shed light on possible outcomes. She has about 150 single words but is having trouble putting more than one word together. There is no suspicion of Oral or Motor Dyspraxia, just verbal. My greatest concern is that she will not make friends
    Any replies will be read with love and thanks. xo

  3. #83
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    Islaboo my daughter has mild oral dyspraxia, but not verbal ( that we are aware of, she's only 10mo). The only advice I have for now is to teach her some makaton ( basic sign language) so she can communicate easier with u. I started teaching my non SN son at 4mo and Bree who has major muscle issues is learning a modified version. She can tell me she wants her dummy and toy! Good luck and I'm sure the girls here will be able to give u more info.

    Now the reason I'm on here. Bree's back in hospital with suspected pneumonia. She's on humidified oxygen and they're talking about putting her on CPAP in ICU. When does it freaking end?! For a lil bub she sure has gone thru a lot. Not sure if it's from the RSV or aspiration from GERD but the staff kno us so well now at least I don't have to tell her story over and over! Considering renting a room here tho :P


    Sent from my i (couldn't live without it) Phone

  4. #84
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    Islaboo from my experience young kids dont notice differences. My 2 have never had a problem making friends. They are 9 and 4
    Kizz: sucks about hospital. my mr 9 had pneumonia twice one year but not to the level of Brees when he was 1-2 yrs old. He never had a diagnosis we were told to be careful of with chest infectiuons with but mr now 4 did have a condition we were told we needed to avoid chest infections at all costs (like thats possible) due to his unability to cough up mucus leading to pnuemonmia etc. he was just lucky though. dont know how we avoided it really with all the ED admissions and coughs around him.
    Thinking of you and Bree
    xo

  5. #85
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    We had an appointment with the ENT at Westmead today. Both E and J need grommets. They have been put on the surgery waiting list so now we are just waiting for a date.

    Im feeling so run down. Between the 2 kids I have had an appointment nearly every day. Next week is the same and even 2 in the same day.

    Ive been diagnosed with PND and seeing a physchologist. She said Im over doing it and Im burning out and I need to cut back on the amount of things I do. Yeh right thats not exactly possible.

    Thinking of you all especially Kiz. Hope tis just a short stay. Your poor little Bree

  6. #86
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    I just want to say, that there are some wonderfully strong people in this forum, that have been through so much and every one of us have the 1 major thing in common, its all for the love of our kids that we wouldnt change for the world.

    well now i need to vent!! we have had a shocking couple months in short... hospitalised for mia's (9month old at time) seizures in feb, then i was hospitalised for a kidney infection, then my husband got appendicidis and had them out, while he was in hospital mia got a bacterial gut infection and was hospitalised, then my 3 year old ella got it, then we all got a nasty flu that turned into throat infections so that was antibiotics for all 5 of us and 2 trips to the doctors, (we live on a farm 100km from town) then we had a dose of gastro go through the lot of us, then mia had 2 more seizures and was in hospital for 4 days, then i managed to get a nasty kidney infection again that had me in hospital for 5 days plus a few trips to hospital in the days before i got out of hospital on mia's 1st birthday that was 2 weeks ago, since then the follow up stuff has started, doctors appts for my kidneys and now waiting for my july appt with the kidney specialist but need to have regular ultrasounds etc, adelaide last week for Mia's first MRI because of the seizures, then adelaide next week for an EEG, then we have a specialist appointment in adelaide also in june sometime. adelaide id 400kn away.
    so yep we have had a run of bad luck and i can only hope it starts to get better, BUT in the meantime, my almost 4 year old, is extreamely demanding and the doctors have never taken me seriously when i have gone, we really believe there is something amiss there, since birth we have thought something was off, she has just never been happy, she is very over excited then next minute she is screaming cos she is hungry, then she is tired very quickly, just very demanding and you honestly cant reason with her because we dont think she understands..
    then there is my little prep girl Kaitlin she will be 6 next week, has always had lots of friends in our little community, BUT all of a sudden she started school this year and her confidence has gone backwards, then i find out this week that she is getting picked on at school by the kids she has always been best friends with and plays with every weekend at football etc, they just refuse to play with her at school so she has 1 other little friend that also gets picked on... it breaks my heart to see her emothional over that sort of thing, it is only a little school with about 25 primary kids all up. then in july kaitlin will most likely be getting glasses and when she told these so called little friends they told her that they will laugh at her untill she cries cos she will look so ugly!!!!!

    my question is, how do you all stay strong???? i just feel so mentaly and emotionally drained at the moment, it doesnt help that all of mia's seizures happen in her sleep, so i spend the night jumping up checking on her and during the day i pretty well watch her is she is sleeping because she sleeps very fitfully and her breathing goes all funny. so my brain just cant stop. how do you not get burnet out? pretty well all of these things have happened during our busiest time of the year while my husband is on the tractor planting crops.

    then we are trying to get pregnant again and it hasnt happened yet, more than likely stress related.. just feels like nothing can go our way!
    i do apologise for the whinge, but i do feel much better having had it!!


  7. #87
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    wow mumofkaitlinellamia you have had a rotten run of luck! Glad you are relatively healthy now, must be so hard being so far from the hospital. I get it though, we are rural and although only 20k from our local hospital and doctors all our specialist appointments are in Perth which is 400k away. Luckily our families are in perth, but its always such a pain to have to go there mid week (so DH can't come) and try and get everything booked on the same day-impossible!
    I hope your kidneys are OK and that TTC starts to work for you! It would be a bit of a miracle if it had though with all you've been through. Hopefully it happens now without all the gut infections etc.
    Your poor little Kaitlin! Kids are soo horrible sometimes. It's so hard to know what to do, I hope they start to include her more. Do you know their parents, any chance of having a word to some of them?!

    myhusbandswife hugs for you and your little ones. Hopefully some good will come of the diagnosis (something a little more useful than "stop doing so much"... yep, mm hmm, like THATs even a remote possibility!
    Do you have any family close to you so that you can plan a "day off" every few weeks and they can have the kids for you? Might be enough to let you unwind and feel a little human again?

    kiz how is everything going? I hope your little Bree doesn't have to go on CPAP, my Will was on CPAP for the first two days of his life and that was distressing for me on a newborn, I couldn't bear the thought of it at Bree's age. But then again, if she needs it......
    Hope the staff are looking after you, seeing as you are a frequent flier and all!

    hi islaboo sorry to hear about your DD's diagnosis, I don't have a lot of advice at this stage but my DS's condition is usually associated with speech difficulties (and sometimes complete non-verbalism) so I may have some advice as we get further along! He is 15mths and not saying any words yet, but does babble which is enough to make me smile! We are doing a little bit of baby sign from charts and looking into some classes. Don't look too far ahead into your DDs future just focus on now and what you can do to help her. Kids are amazingly accepting at a young age.

    AFU have an OT/physio appt next week then up to Perth to see the surgeons (followup after testicle surgery a few months ago) and ultrasound on Will's kidney (single: had a blockage at birth and surgery at 7 days old- followed by recurring nasty resistant UTI's for the first 6 months-so they like to keep an eye on it!)
    Hopefully then we get a break for awhile. We are on a waiting list to see an opthalmologist (no concerns except for known eye conditions associated with the condition) and a speech therapist. I am also 27 weeks pregnant and starting to feel a bit tired and run down with all the appointments and focusing on Will's learning and development. Hoping having two is not going to break me (big admiration for all you mummies with more!)

    Hope you all have something to smile about today

  8. #88
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    Hi everyone

    Sorry to hear that there are so many of us going thru so much at the moment.
    Been fighting off the flu all week so haven't had a chance to get on here much and been so busy with appts and getting my picky toddler to eat argh!

    Kiz- I hope that Bree is pulling thru the pneumonia ok and that you managed to get thru it without the CPAP or a vent. I know just how stressful ICU is and the whole hospital stuff. waiting to hear some good news. Good vibes your way.
    Islaboo- I'm so sorry to hear about your daughters diagnosis and I really hope with good therapy you guys can make some good progress.
    MHW- The appt mill is very stressful and disheartening we have other issues as well as hearing loss and I know that it feels like it never stops. I have recently been seeing a psychologist to try and help me process everything that has happened with our lil man in the last 19months. The best advice I can give is to take each day as it comes, not too look too far ahead in the future and worry about yesterday or tomorrow so to speak and I have also started to leave my lil one more often for a break with his grandparents (can't use childcare at this stage due to his seizures and he gets sick very easy). It is very hard to cut back on appts/activites but maybe you could try making some time for yourself even just half an hour here or there by yourself. I have also started leaving my husband with him more too.
    mumofkaitelinellamia- I hope things start to settle down for you guys soon. It is awful that your lil girl is being picked on, just another thing to add to the stress, not that we don't have enough some days. I hope you can also find a paed who will listen to you inregards to your 4 year old behaviour, it can be very hard sometimes but you guys know her best and can sense that something is not right. I have a friend who had to fight hard to get her lil man diagnosed with SPD, he had lots of behavioural issues and she felt like people were balming her parenting skills and not taking her seriously. I hope your other dd MRI goes well and that her seizures start to become more under control, has she been put on meds to help my lil one is on keppra and epilium and everytime he gets a fever it can trigger them so we hae to watch him like a hawk! Hope your own kidney issues start to improve and you get good news at the specialist. Goodluck with ttc, we are about to start ttc in the next few months as well and I'm extremely nervous after all we have been thru.
    Alpacamum- hope everything went well with your appts in Perth and that you get some rest and that your pregnancy continues to go well.

    Hope everyones weekend is going well.

  9. #89
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    Hi ladies.

    Ive got a question, do you know of anyone who makes/can make these:
    http://i257.photobucket.com/albums/h...erbeanbags.jpg

    I cant fathom spending $30+ for them, i just cant afford it, but i think Alex would love them!!

    I'd also love to get her one of these: (but with 'what Im doing today' - school, kindy, OT etc options) http://i257.photobucket.com/albums/h...zICLNHc_12.jpg

    Theres so many cool things lol!!

  10. #90
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    Hey living onn a prayer. I'm not sure who might make them but have you had a look at ebay- sometimes they have stuff on their like this. Goodluck


 

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