Ask me anything
Have you signed up to the Formspring site? I think there should be a link somewhere where you can then add it your blog. It should take you step by step through the instructions. You will need to add a gadget (use the add html gadget) and then you can cut and paste the formspring code into that gadget.
Does that help at all? Let me know if that helps you!
Gee you have a good memory! It all went really really well!! No sleep apnoea episodes, oxygen levels all good and heart rate excellent too. So no need for further investigation!! Very very happy about that too.
He still doesn't sleep that well, but at least we know that it's not due to his snoring or lack of oxygen!
Thank you for the question!
Ryley does walk, and has been walking independently now for nearly 2 years. He started walking with assistance when he was quite young, but because of his size and low muscle tone he would tire very quickly and always needed assistance. He still gets tired now, but can walk for longer!
Ryley is in nappies (or diapers for those outside the US) all the time. We do have a special toilet for him so that he can sit on it easily.
He has used the toilet quite a few times over the years, but he can't communicate when he needs to go yet, so we are working on helping him make that connection at the moment.
While he is on long holidays over summer, we are going to try again with the toileting.
I don't expect him to ever not need a nappy or pullup, but we will keep working on it, because it would be great for him if he could go himself!
Great question, hope that helps answer it in someway.
I didn't really explain that in my blog post did I?!
Ryley had very bad teeth. He used to grind his teeth, so the back molars were actually ground down to nothing. All his teeth were weak to start off with, so the combination of grinding and then all the medications that he has had for the past 8 years has meant that they were decayed to nothing (plus we have no flouride in our water, so to some degree that hasn't helped I guess!).
He didn't even get all of his baby teeth! So he was missing some of his molars and some of them were only stumps, so hadn't formed properly.
His bottom teeth were only just starting to rot, but they felt that they were the ones in danger of causing him the most pain, so needed to get them out as well, even though they looked ok.
I think teeth issues are part of WHS. Until his top teeth started to noticibly be eroding away, we didn't think there was any issues. We rarely got to look in his mouth, and teeth cleaning always had be with lightening speed!
Hope that answers the question!!
My old 1983 XE Ford Falcon. It was my first car and was still going until my sister blew up the motor! It is currently sitting in a shed at my inlaws house.
I should throw it away. But I just can't.
I am hoping to 'one day' get an old motor and put it in it so we can have a paddock bomb to thrash around the paddocks and up the bush.
In all fairness, David still has his first car too (which is sitting in a paddock at his parents house).
I did love my car Rover though. I did many miles in it.
I run solo at the moment. I don't have any friends that are runners, though there is one girl at work who runs. She has her own little running posse who run 15kms, so I am not quite there yet!!
I probably prefer to run solo anyway because I spend most of the time talking to myself and pushing myself. I probably look crazy!!
One of my best friends and I try and walk the lake together once or twice a week though!
It's funny because I first heard the name Ryley the summer before I fell pregnant with him when I went to the Tamworth Country Music Festival (Tamworth is like the Nashville of Aus). A lady by the name of Elizabeth Lord was singing a song called 'Riley's Run'. It was all about a train I think.
I just loved the name Riley (Ryley) and decided if I ever had a baby boy that would be his name!
Turns out I didn't have to wait long! When I found out I was having a boy, I knew then and there he would be called Ryley. But for some reason I didn't think it looked right being spelt Riley. I like to be a little different, and so when I found the gaelic spelling with a y, it just fit perfectly!
His second name Jack just seemed to fit with the Ryley and it was David's grandfathers name as well as my grandfathers. Jack is also a derivative of John, which is David's second name and my Dad's name.
Phew. Long explanation hey?!
Braeden was a name I had seen while on a parenting website and I loved it immediately. I have always loved the name Brae (I used to work with a Brae), so that is why it is spelt the way it is!
Aleksander is my other Grandfathers name (although his was spelt Aleksandrs). He was my Latvian Grandfather. I wanted to make sure part of my Latvian heritage was passed down too, hence the spelling. My grandpa Alex was an incredibly strong man, and I hope that Braeden inherits some of that as well..I know that Ryley certainly has!
With Braeden's name, we had already decided on it even before we concieved him!
We do have one more boys name left should we ever have any more kids-but as I have said before-the chances of that happening are pretty much 1 in a million!
Ryley is also 8 years old and attends a school here that only for children with disabilities. So he gets all his therapy through the school, which is wonderful.
We also work on things at home too, based on what they are doing at school.
Ryley can walk, but he is still unsteady and clumsy at times. He also gets tired very easily. We have to work on building up overall strength and try and increase his stamina, so he accesses a hydrotherapy program at school, as well as Perceptual Motor Program, Physical Education and and Occupational Therapist.
His physiotherapist (who I also happen to work with!) sent home a program for us at home which has been great. We also tend to just take him to the park and let him practice climbing and going down the slide. He loves it!
At home, we also have a trampoline and we have a variety of sizes of gym balls. So we hold him sitting on one and get him to bounce. It really helps with his core muscles and balance.
Speech wise, Ryley doesn't talk. He can Mum, but that's it. At school he uses some PECS (picture exchange communication) and I think they use a Big Mac device too. This is an area we would really like to work on and are going to start some private speech therapy this year.
Ryley first started to walk in the swimming pool! For some reason he felt more confident in the water.
We try and incorporate therapy type things into everyday activities. Ryley seems to need a lot of deep pressure at the moment to help calm him down. He can get quite agitated at times, and gentle massage of his hips just helps him centre himself again.
I would love to talk more with you. Whereabouts in the world are you?
1. I can't start the day without a strong coffee!
2. Sometimes I am just not patient at all.
3. Procrastinating! (Like I have been meaning to organise respite now for over a month and eat week I have said that this week I will do it...er..still not done!)
1. I am a good listener (too good sometimes, I am a magnet to people telling me their problems no matter where I am..)
2. I am good at organising things.
3. I have an amazing ability to read body language, which means when you are telling me something, I am not just listening to your words, but how you say them, what your face and body are doing. It gives away more than you realise!
I would like to think that if I could pass on to my kids the ability to be compassionate then I would be very happy. Hopefully I lead by example and it will just rub off on them. Sometimes just smiling at someone can make a huge difference to their day.
No I don't listen to music when I run. I don't even own an Ipod! I tend to listen to the thoughts running through my mind but that's about it.
I would probably run faster if I had songs though!!
Well, I have never really given much thought to this actually, but I bet as soon as I start writing them, they will come pretty quick!
So here goes:
1. Go to Paris, in winter, when it is snowing and stand under the Eiffel Tower with the people I love most in the world (David, Ryley & Braeden in case no one could guess that).
2. Drive around Australia in a Winnebago.
3. Work in the remote outback communities in Australia with the Aboriginals.
4. Buy some land out at Amphitheatre so that we always have open space to go to.
5. I want to run in a marathon...at least one!
6. I want to do my Doctorate. Masters degree first which I plan to start in a couple of years.
7. I want to be someone who drives government reform to the Disability Act, and how funding is handed out. There needs to be more support for Carers and people with disabilities. I am talking basic access and basic human rights that people are being denied. I will find a way to bring about changes!
8. I want to finish these house renovations!!
That's as many as I can think of for now.
Even trying for another baby has been one of the biggest decisions we have ever made. One of the reasons it took us so long to have another baby was because we had to be ready for whatever our future held.
We had to be united and definite about the decisions we made in regards to the testing and what we would do if we were carrying another baby with WHS.
One of the reasons I will never go through it again is because of the huge emotional toll it took on both of us.
Genetic testing like CVS and Amnio are very personal choices. For us, because of the huge risk we chose the testing. If I didn't have the balanced translocation, I would have still chosen to test.
I did have faith though. I believed that whatever was meant to be, would be.
So yep, I was terrified of the genetic testing.
Aah this is a question I get asked all the time.
Short answer. No.
There is no plan to have any more biological children. I have a balanced translocation which means that our chances of having another child with WHS are very high (1 in 4).
When we had Braeden we went through the testing and to be honest, it really took its toll on me.
Emotionally, I couldn't go through it again (unless I fell pregnant without planning on it-but the chances of that happening are very slim!).
Our plan is to foster children. So give children a safe, beautiful and loving home at the time they need it the most before they move on to permanent homes with adoptive parents. If we can make a child believe that they are loved while they are with us, we know it will make a difference in their lives.
I am sad that I can't just go ahead and have another baby. But there is no point in dwelling on it. We are so lucky and blessed to have the two beautiful boys that we have.