Friday, December 31, 2010

Goodbye 2010

Did anyone notice that I forgot to post TMAT? Oops.

Haven't been on the computer much lately, so am way behind on both blogging and blog reading. I finally have a few minutes to myself, so will write my final post for the year.

The last couple of weeks have truly been a whirlwind. We didn't really get a chance to recover from our stint in hospital before it was christmas and suddenly we had two parties at our place (Christmas Eve and Christmas Day). Then it was down to Melbourne Boxing Day for another celebration. By this stage, Ryley was absolutely stuffed. So were we.  But Ryley really was starting to struggle, so we spent the next two days at home doing nothing. In fact, the day after boxing day we didn't get out of our pajamas.

Ryley is doing ok. Not great. But ok. One day he seems he ok, then the next he is totally wiped out. Like today. He is coughing and having a million seizures and just seems really crap. It is going to be 40 degrees celcius today which is VERY hot. So that will be a challenge for him. We will crank the air con up and let him go for a swim in the little pool later and that should cool him down a bit.

Braeden is Braeden. Happy, loving all his toys (especially his pig figurine from Toy Story 3 and his Mr Potato Head). He is really enjoying having David home and they tend to go pottering off to the shed together, or work on some kind of building project (Ryley prefers to watch).

This year has been filled with some ups and downs. Ryley, although stronger, bigger and more confident, has battled through with some health issues. Next year I know will be filled with doctors appointments and it fills my heart with dread really. Not because I think Ryley is going to get sicker, but because of the constantness and stress that goes with lots of doctors appointments.
But.
We will cross those bridges when we get to them.

I usually write what my goals are for the new year, so here are a couple:
  • That we continue to enjoy life as much as we can. We always appreciate the life we have, and will continue to make the most of it!!
  • We are aiming to reduce our debt significantly in 2011.
  • We are only planting things in our garden that are edible (we just planted an apple tree, kiwi fruit and passionfuit the other day!).
  • To have a successful WHS conference in our beautiful town.
  • To make sure we spend lots of time with each other and make every moment better than the last.
We have other goals, but they are not going to be shared with the world...!

So to my loyal readers, thankyou for another year of reading, commenting and letting me ramble on. I still am amazed that people choose to read my blog. My posts may be a bit sporadic over the next few weeks while I am on holidays. But I will be lurking around and will definitely try and get some blog reading done!!

Anna xx

Thursday, December 23, 2010

Updates

I really just don't seem to have the energy to write at the moment. Ryley is home from hospital. He came home on Monday. He still isn't well, but we are very capable of caring for him at home, so now that his Sats are in the 90's we are confident enough to bring him home (they even got to 100 at one stage before we brought him home woohoo!) Plus he was starting to get bored, which is the sign to us that he is feeling better.

This hospital visit was pretty scary. He hasn't been this sick ever I don't think. He hasn't had pneumonia since he was 3 years old. That alone scares me.
This time, he just about stopped breathing which meant that the doctors had to give him prednisolone (steroids) which meant that it compromised the Ketogenic Diet, which then meant he could have had a massive seizure (because prednisolone sends blood sugars soaring). There was nothing we could do because it was a life threatening situation. We had to take the risk of him having a big seizure, because if we did nothing, well...I don't know.

He has started to bounce back a bit in true Ryley style, but he is still coughing and having a day sleep, so he is still not feeling that great I don't think.

Braeden is starting to become less insecure again as we have been getting back into a normal routine.

Thanks to everyone who has supported us throughout the last week. I am constantly overwhelmed by people's generosity and their words of support.

Next year is going to be huge for us. Not only do we have the conference to organise, but now Ryley has to have a sleep study done and investigations for asthma. We have to go back to having a regular paediatrician again which is not something I thought we would have to do for many years to come. We have changed paed's now though and are confident we are going to get the support we need to help maintain Ryley's health as best we can.

One thing is for sure, we are just glad we are home for christmas (as stressed as I am about that) and are hoping we don't have to go back into hospital for some time.

Saturday, December 18, 2010

Pneumonia

Just a brief update for those who aren't on my FB or know me in real life.
Ryley has been in hospital since Wednesday night with viral pneumonia and asthma on top of that.
After 3 very scary nights, we finally think he is starting to improve a little bit.
We are hoping he will be out within in the next few days.

I will post a proper post when I get time, but wanted to also say a HUGE THANKYOU to everyone who has messaged us, posted on FB, visited, prayed or offered help. It truly means more than you will ever know. This has been a very tough time for us and we are all exhausted (Braeden is particuarly upset and sad by everything).

Ryley is a fighter. That is one thing we are sure of.

Tuesday, December 14, 2010

End of year report-Ryley style

Yesterday Ryley brought his school report home, and then I had a meeting with his teacher last night.
To say I am proud, really doesn't quite convey how I feel.
Ryley's determination in life is something to be marvelled at.
That kid seriously never gives up.
He has had a fantastic year, despite the illnesses, the operation, and having to battle with daily seizures and constant pain.
The stand out thing for us is the way he has grown in confidence. He is trying new things all the time, and not giving up as soon as it is too hard. He does tire very easily particularly when it comes to fine motor tasks, but that is because he has the most seizures when he is concentrating on making his hands work.
We are looking forward to next year, because the sky is the limit for Ryley. We are realistic in our expectations, but know that Ryley enjoys being challenged. This time last year and we didn't ever in our wildest dreams expect that Ryley would be walking independently around his school with absolutely NO need for his wheelchair (although he has since grown out of it and we do need a new one for those times when he gets tired). 

Braeden, too, had a fantastic last swimming session yesterday. He actually swam under water (and blew BIG bubbles he told me) and RAN on the mat and jumped off!!! I was incredibly proud of him. I knew he would always get there when he was ready.

Last week of school this week, and work too for me! For some reason, I decided to start boot camp last night, so for the next two weeks for three nights per week I am challenging myself to get fit. After one night, my arms and legs feel like lead and I want to sleep all day. BUT. This is a personal challenge for me. I want to end the year feeling strong and ready to embrace 2011. I have been so sick this year and both Ryley and I have had a terrible year health wise, so I would love it if we both started 2011 healthy.

PS. Ryley did so well in his end of year concert!! Another proud moment. He was so confident on the big stage.

Thursday, December 9, 2010

Tell Me About it Thursday

Here we are at Thursday again.
Haven't been many posts between Thursdays now has there?
I have been waaay too busy, and without the thought of breaking a NaBloPoMo promise, I just haven't been motivated to turn that computer on at night.
Anyhoo.
It is TMAT.
So what should I write about today?
Seeing as it is Christmas soon (did anyone forget that??), I think I will write out MY letter to Santa.
It goes a bit like this:

Dear Santa,

First of all, I have been pretty good this year, so you really need to bring me what I want, ok?
I have quite a few things that I want, and I don't think I am asking too much.
First of all, I would like a million dollars.
(That's really not that unreasonable).

For Ryley:
  • I would like all of Ryley's seizures to disappear please. We are now on a ratio of 3:1 on the Ketogenic Diet and don't have quite as much room to play with that as before. So can ya help him grow a bit more and those seizures to just go bury themselves in the earth?
  • I would also like an ipad for him. After him playing with my touch screen phone and realising very quickly he can move stuff around, I reckon he would do quite well with a ipad (Plus his mate Elliott has one now, so he has to keep up if you know what I mean).
  • I would like him to have a healthy year next year. No nasty operations please. No stupid stinky cough that never goes away. Actually. Could you also take that cough away please. He has had it for about 8 months now and it makes him vomit through the night. He really doesn't need it anymore.
  • I would also like Ryley to be able to assert himself a bit more please. He is getting so confident at the moment and I love that he is starting to really make his needs known, but I want more of that.
  • And finally, I want Ryley to be able to spend lots of time laughing and having fun!!
For Braeden:
  • Can Braeden please have a haircut? He really wants one, and Saturday is a long time to wait, and he may have to take matters into his own hands. Those scissors he has been using at daycare are pretty tempting and he is fairly sure he could do a good job, so can he have a haircut, like, now?
  • Braeden would also like all the Toy Story Figurines. The ones that do stuff. He also wants a motorbike. And a horse. And pretty much every toy in the toy catalogue. Santa brings all that stuff, right?
  • I would like Braeden to also continue to enjoy life as much as he does. He is forever laughing especially when he knows he should be getting dressed and he is trying to hide by covering his eyes. I would hate for that laughter to stop.
  • I wouldn't mind it if Braeden continued his good run of never being to the doctor. In 3 years, he is yet to visit and take any medication other than panadol, so I would love for that to continue.
  • I would also like Braeden to not need his "more" next year and want to sleep in his big boy bed without his Mum. Though I know that might be something that takes a while.
OK. That's it Santa. I don't really want anything for myself. I would rather my kids are happy and healthy (oh yeah and that husband of mine too, better include him in that!). We look forward to and exciting Christmas this year and many many more to come.

Love Anna (you remember where we live, right?)

Saturday, December 4, 2010

Just one of those days

You know it's going to be an interesting day when the first thing you hear is "Awake Mum?" at 6am.
No I am NOT awake thankyou.
No matter how hard I tried, I just couldn't pretend I was asleep. Which was probably something to do with the fact that Braeden was jumping on my head telling me to "Awake Mum, Awake Mum".

Ryley, upon hearing that the household was up, thought it best if he got up too. I encouraged him to snuggle in with me in the faint hope that he would fall back asleep (Braeden was playing with his toys by now after giving up on me), but no, this wasn't to be.
As I was lifting Ryley up on the bed, I thought his belly felt very smooth.
It took me but a second to realise that OH MY GOODNESS, the Mic-key button wasn't in his tummy.
Oh good.
As I pulled up his top I could see that the button had been out for a while because the hole had started to close over.
FUCK!!

Somehow, while causing Ryley huge amounts of pain and discomfort, I managed to shove the damn thing back in, therefore saving us a trip to the RCH so they could put it back in under GA.
Sigh.
Poor Ryles.

Today I also decided to start my christmas shopping.
Now.
For those that don't know me as well, I often claim to NOT be a people person.
That is in fact, very true.
I despise large crowds and avoid them if I can.
I just don't have the patience.
I tolerate the crowds at christmas time, only because I enjoy buying gifts for people. Though sometimes, even that isn't enough.
It seems that at christmas time, everyone is in a bad mood when shopping. There is pushing, there is shoving, there is a general disregard for other human beings.
Another sigh.
As tolerant and patient as I was, I just got sick of it. I abandoned my christmas shopping half way through and thought 'Feck it, I am going home and shopping online'.
This was nothing to do with the fact that I had started feeling that I was really running behind on the whole christmas shopping thing too. There was SO many empty shelves.
Crikey.
And I thought I was being really organised by starting now.

Anyway.
One sparkling glass of champers later and I think I will start browsing the shops online.
The boys are all happy watching the cricket (oh how boring) and eating chips.
So I am going to enjoy the serenity and see how much money I can spend!

Thursday, December 2, 2010

Tell Me About it Thursday

I recently got asked this question through the Formspring link to the right. Here is the answer!

Does your son walk and does he use the bathroom on his own or wear pullups?

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.

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