A new board!

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!

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.

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

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!