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Mamaofboys View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mamaofboys Quote  Post ReplyReply Direct Link To This Post Posted: 07 August 2012 at 1:53pm
Hi LADIES I'M BAAAACK!!!!

Well first welcome to all newcomers and hello from me!

We have been so busy this year and its gone so fast. Since my last super long post- we moved home last september after 3 months at my in laws to a beautiful wee flat, eqc more than repaired the fire and eq damage everything was replaced- even the loo. So we're all settled now and its so nice to have your own space!

Kanye has continued to go back and forth to the neurologists this year- i dread the amoount of meds tehy want to give him but they did diagnose his seizures (afte ri finally managed to catch a seizure on video) as myoclonic epilepsy but he pointed out that Kanye could possibly have all types of seizures and its possible the meds may never fully stop or prevent them only reduce so as hard as that was to hear i think i was already thinking that and it was just a confirmation for me.

We kind of inherited a cat, the neighbours cat spends all its time here, its always here we actually called the owner and said your cat is always here, when we mentioned that since the cat has been here Kanye is soooo much calmer and she seemed happy that the cat was here. I find it interesting how much animals sense about kids like kanye- my uncle came down at christmas with their boxer dog and instead of being a jumpy puppy it sat with Kanye all the time and didn't bark or lick him and when he had a seizure it barked, my uncle was blown away as he hadn;t taught his dog to do that.

Anyways Other news Kanye got his very high needs Orrs!!!!! Finally! We also got a specialist teacher from Ferndale coming in twice a a week so he has more one to one now.

Kanye had surgery last friday for cautery of his nose- he has massive nosebleeds and my gp cauterizing it hasnt worked so they burned the blood vessel under anaesthetic.
My gp also put Kanye on clonazepam a few weeks ago as he started waking at about 1-2 am and just staying awake, we tried all techniques and strategies to get him to go back to sleep on his own but in the end we were all so tired clonazepam was our only answer and it works! He stays asleep all night although some nights he'll get into our bed he sleeps and thats all i care about!
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susieq View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 11 August 2012 at 4:29pm
nice to see you back, my 26 year old special needs daughter is in Hamilton this weekend on a special needs camp for young adults 18 plus
susie
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AuzzyMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AuzzyMum Quote  Post ReplyReply Direct Link To This Post Posted: 22 August 2012 at 3:11pm
Hello Everyone.
I'm not sure how many people use this thread but I wanted to pop in and say Hi.
DS has just turned 5 and his pead has agreed he needs to be screened for autism.
He also has Microtia Atresia (Only one working ear)
DS started school last week.
I'd love to chat with other mums that get SN problems.
I am 17weeks pregnant with #2 and the other mums are nice but don't really get it.
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Mamaofboys View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mamaofboys Quote  Post ReplyReply Direct Link To This Post Posted: 22 August 2012 at 9:42pm
Hi AUZZYMUM, Welcome! Starting school is huge hey, i was soooo incredibly nervous when my babe started school. Congrats on having number #2! hubby and i are trying for number 3 we've ummed about it for so long we just decided to do it anyway. I have to say with number 2 i was really apprehensive about Kanye and how he'd react to new baby, but actually he surprised me! he was so good, and it helped improved his patience so as much as i was afraid how it was going to affect Kanye it actually worked out for the better so fingers crossed for you that this is the case! As for autism screening they dont always do it until 7 as far as i know, kanye is 7 and they arent keen even now to do it its really frustrating. I don't know much about microtia atresia but id be happy to learn more and hear your story.
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AuzzyMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AuzzyMum Quote  Post ReplyReply Direct Link To This Post Posted: 22 August 2012 at 10:11pm
Thank you Mumaofboys.
I'm not sure what to put in a story. Will try tomorrow.

DS is really excited about the thought of a baby.
But he is only really able to get into the technical side of it. He watches the developmental videos to see how the baby grows when the heart/blood starts to pump.
He loves it.

The Pead did say it is a long process for screening so I'm not sure it will be done before he is 7.
But we have surgery looming so I'm not fussed if it takes a bit longer so we can get one thing done at a time.

As for Microtia I have added the link to DS's specialist at the bottom. He works out of Starship and specialises in these kind of conditions.
For us it means DS has one working ear and one that didn't develop past the cochlear. No hole in his skull or anything. Just a little ear lobe on the outside.
The site explaines it a bit better than I can.
We are getting a Bone anchored hearing aid for DS in the next few months.
Happy to answer any questions as it is a very rare condition. I have not met anyone else or heard of any other cases. Would love to so DS didn't feel so different.

http://www.ear.co.nz/index.php/conditions/otitis-media-3
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AuzzyMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AuzzyMum Quote  Post ReplyReply Direct Link To This Post Posted: 25 August 2012 at 11:24am
Ok Story time. I hope.

Hi everyone I am Corrine and My sons name is Aleksei.
At birth we found Aleksei had only one ear. The other was just a small ear lobe.
DH was not with us for the birth (Away working) I had to deal with it on my own.
DH came home for good, when DS was 3, after finishing out his contract.
We had lots of trips back and forth to visit.
So after a lot of research and help from family we found out Aleksei had Microtia Atresia. I started teaching Aleksei Baby sign language from about 6 months.
At 1 and a half we were sent to Starship to see a couple of specialists and found it was one of many abnormalities that we could and couldn't see.
After many scans and test we found out Aleksei is lactose intolerant but he may not grow out of it as other children would. His Kidneys were under developed but that would not be a long term problem.
He also has no ear past the cochlear.
So for the next few years we battled with all the hospital visits with various infections and this and that.
At 2 I was told they would like to test Aleksei for Autism. They didn't as he was to young.
I home schooled Aleksei from the age if 2 until he started school a few weeks ago. He did go to Kindergarden for a few months but they didn't want to deal with him the way he needed so I pulled him out.
At the age of 5 Aleksei is now being tested for Autism and is at school. We have the surgery to get his hearing aid coming up soon and we are getting a head band unit in the mean time.
Oh I am 17 odd weeks pregnant with #2 also.

Mumaofboy did I cover everything? If not please let me know. lol.
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Mamaofboys View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mamaofboys Quote  Post ReplyReply Direct Link To This Post Posted: 25 August 2012 at 3:01pm
Wow what a journey you have been on! You have done an amazing job, i can imagine how difficult it is for you. I'm glad to hear you have fam and friends there to support you it can be very isolating. Alexsei is such a cute name! I bet he's a cutie! I'm happy they are doing the autism test for you, its nice to have answers! I get tired of hearing from specialists and doctors that we can do the tests but its not going to change anything - i know that its just nice to have answers! Have you had any early intervention or do you have any help for him at school? Like ORS funding ? My sons school have bent over backwards to help him.

Sounds like you have been on the right track from day one- i hope though you take care of yourself, one of my sons specialists said to me that having a child with difficulties is like ongoing mourning, you have times where you do research and try to do so much to help then sometimes you just crumble and you need support and time out to have a break and be a person, and with no#2 on the way (congrats btw) you need to have lots of you time cos it just gets busier lol. I'm always here if you need to chat, i also looked at the link you sent its really interesting, i have heard of it but didnt know anything about it so thankyou for posting it!
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AuzzyMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AuzzyMum Quote  Post ReplyReply Direct Link To This Post Posted: 26 August 2012 at 10:40am
Thanks Mamaofboys.
Yes my little man is going to break some hearts. He is a charmer when it comes to older ladies. Lol.
It's good to be told it's ok to crumble. I do so much research and running around that I feel like a robot most of the time. It gives me the will to get things done.
We have had no extra help or funding for Aleksei at school.
He doesn't qualify for ORS but might if the Autism screen comes back pos. Yes it would be nice to have answers.
I'm sure that once he settles into school I will be able to take a little time for me. Then I might get to nest as I missed out on that last time.

I use that webpage often. It was the easiest way to explain it to my family and friends without having to repeat myself 20 times.
It's also been great for looking at what will happen for Aleksei in the coming years.
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