A Blog About a Bloke-Living with WHS

Just a very quick update because it is way too cold to be sitting in my study on my computer. Ryley has made it through today with no vomiting and has managed all of his PEG feeds. We are desperately hoping he is on the mend now, although we don't want to get our hopes up too high just yet. He has spent the day resting today, which is what he needed the most. It was a good day to stay in bed too. It only got to 5 degrees celsius here today in Ballarat. Brrrrr. That is very very cold!! Thank you for all the prayers and to those who are looking out for us. Without our network of friends, we would be lost. I can't really describe in words what it means to get a little message, or a quick comment or offer of help on here or on Facebook. I will never be able to express my gratitude I don't think. So...here's hoping our little man is on the up again. Because in just over a weeks time, he gets to have surgery and have most of teeth removed. It is going to be quite trau

We are back to where we started again with Ryley it seems. He spent yesterday, last night and now today vomiting, cramping and crying. He desperately wants to sleep, but everytime he fell asleep today, Braeden woke him. If he is like this tomorrow I have no choice. I will have to take him to the RCH.

Just a quick update... Ryley is much better today. Thank goodness! We were so worried about him. He hasn't been this sick in a long time. Hopefully he will stay well now as he has surgery coming up in the second week of holidays which we are not looking forward to. Thanks again to the people who messaged me through here, FB or IRL. Thank you too for the offers of help (you know who you are!). David and I don't ever get a break and we truly feel it even more when Ryley is sick because we have to maintain round-the-clock care for him. Somehow we still have to juggle our jobs, and make sure Braeden maintains as normal routine as possible. David and I are both very grateful to our workplaces for being incredibly supportive and allowing us to have flexibility in our work times. This is the only way we can both continue to work (and therefore pay for the ever increasing costs associated with having a child with high medical needs). I know most families who have a child with a di

 Ryley is sick again with I-don't-know-what. Viral infection if you ask his neurologist, but that is based purely on what I have said over the phone. He doesn't have a temperature though, so um??? Anyway. Cutting a long story short. He has has stomach cramps for 4 days now and vomiting a couple of times a day. The inside of his cheeks are swollen and he is desperately unhappy. He is so miserable that he just sobs and sobs. In desperation myself (and sobbing because he was sobbing which made him sob harder and then Braeden looked like his face was about to break out and then...well...I thought I better stop crying), I phoned his neurologist. I spoke to one of the registrars who was fantastic and had 'heard' of Ryley before. She reassured me that it probably wasn't the increase to his meds that was causing his sickness but said she would chase down his neuro anyway (because that was my first concern). They phoned me back within 10 minutes and told me not to worr

                                                            1. Dress up as a ninja turtle. 2. Pretend you are waaaay to old to play with dolls, but keep a close eye on your much younger cousin Talia, just in case she needs to be shown. 3. Love your Dad. 4. Wander around Nan and Grumpy's looking for something to do because it is soooo boring for a 8 and 1/2 year old. Like. Really. When is Unca Bede getting here?

And will we ever have an answer to that? Probably not. Something that has been troubling me lately, and, it seems, some of my friends as well, is the question of therapy and how much is enough. I have been asking myself lately whether or not I should be getting some private therapy for Ryley. As in, extra therapy, on top of what he is already getting through school. I am yet to come up with the answer, and I have been pondering this for nearly 2 months. I guess the concerns I have is that I will overload him. He already has a full day at school, where therapy is incorporated into the activites he does. I am a little in the dark about everything they are doing, and perhaps this is why I wonder whether I should be doing more. Should we be working on things at home so that there is consistency everywhere? Are we perhaps already doing that? One of the things I learnt very early on, was that I was the one who knew Ryley the best. And I was the one who knew when enough was enough.

For those of you on FB, or who follow Blog about a Bloke on FB, you will see that I slipped in some pretty cool news about Ryley's weigh-in yesterday at the RCH. Now, as most people are aware, one of the characteristics of WHS is slow growth, so most of the children/adults tend to be fairly small. This has always been Ryley. He has always been tiny. In fact, he still is tiny. The funny thing is, that now, he actually is on the "typical" growth charts for a child of his age. Allbeit on the bottom, but really, that is a mere detail. Length wise, he is not really near the typical size of an 8 year old, but he is still growing upwards at a good pace, so I am happy. In fact, I am happy that he is growing full stop. Because, for a couple of years there, he really wasn't doing much growing at all. His weight really didn't change for two years (age 4-6). So it is quite a change to see him growing. In some ways, it is a like a small victory to get on those so called no

At the moment the weather is freeeezing here. Winter has well and truly set in. So has boredom. Luckily, Braeden absolutely loves cutting and pasting and drawing. So, therefore, Ryley does too. Yesterday arvo we sat down and pasted for well over an hour. Ryley is exceptionally good at putting glue EVERYWHERE. Braeden is good at sticking stuff to the glue. I, of course, had to help Ryley with his sticking stuff. But they both loved it. David even got some reno work done..woohoo!

Busy. Yep. Busy. That's why I haven't been blogging. Sorry. I seem to spend a lot of time apologising for neglecting the blog hey? In between sick kids, no sleep, working late and David working horrendous long days, I just haven't had time to spend on the computer. Sigh. We are going on a holiday this week. Back to our second home. You guessed it. The RCH. Ryley has two days of routine testing and of course our appointment with his neuro team. So we get to stay at the Medi-Hotel at the hospital. I guess it saves the travelling. Not exactly my idea of a relaxing holiday though, but we might try and pretend it is. I promise I will try and get back to blogging soon. If only we had a 30 hour day.