Tuesday, June 29, 2010

Here's hoping

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 traumatising for him, not to mention painful and scary.
But he is one brave and strong little boy. And we will walk the path with him, his Mum, his Dad and his little brother. Together we can provide the strength he needs to get through another painful surgery.

Monday, June 28, 2010

Repeat

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.

Thursday, June 24, 2010

Update

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 disability can relate to the isolation that seems to come along as you progress through this journey. It is almost inevitable. It becomes even more obvious when your child is sick. If I posted something on Facebook every time Ryley was sick, I imagine people would become bored of me very quickly...I would probably become bored of me too.
Except I can't just press the 'hide' button, or ignore me.

David and I rely heavily on each other. We are the only ones in our team really. We can't just tag someone else and say 'your it'. No one else knows how to care for Ryley (apart from school), so it becomes crucial that we both learn to cope, because if one of us cracks, then life is going to get a whole lot more difficult.

So, anyway, we have nursed Ryley through another illness. A pretty bad one this time actually. We were so close to a visit to the hospital. But we got through instead. Ryley is an incredibly tough little kid. Despite being very unhappy, he is starting to bounce back again...just in time for school holidays.
Did I mention school holidays start tomorrow??! I am looking forward to slowing down the pace a bit and catching up with some friends before the dreaded 8th of July.

Tuesday, June 22, 2010

 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 worry, but if I was worried, to bring him straight down to the RCH.

We have managed to settle Ryley down for the night and we will see how he goes through the night. Fingers crossed he is feeling better tomorrow. I am exhausted and drained and just want my little man to get better.

Sunday, June 20, 2010

What to do when it's cold.

                                                            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?

Wednesday, June 16, 2010

How much is enough?

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. Therapists were good at encouraging me to push Ryley (particularly when he protested very strongly), but more times than not, I would stop the therapy session and say ENOUGH.
I wonder if this made me a difficult parent?
I actually preferred to have a home program written so that I could practice things with Ryley without someone else breathing down both of our necks. I was also able to incorporate therapy into playtime.
This meant that we went at our own pace.

In some ways, the thing that has helped us the most, has been our expectations of Ryley. We haven't stuck our heads in the sand, or set our expectations too high. We have always just accepted Ryley for who his is, not what his abilities may or may not dictate. It is easy to fall into the trap of focussing solely on what Ryley can't do, and put pressure on yourself to 'make it right'. And I can't say, that I am not guilty of doing that on occasion, because if I didn't, then I probably wouldn't have the motivation to continue to encourage his development. But there is a danger of setting yourself up to fail, because, no matter how much you encourage those muscles to move, they are always going to do it when they are ready. Right?

So.
Should I be doing more?
I don't know.

All children go through 'developmental spurts'. Often you will be teaching your child something then all of a sudden it will consolidate and they will learn it. This is normal with any child, regardless of ability. The difference with children with disabilities is, that often the process takes a lot longer, and you can feel very much like you are doing nothing.
Perhaps what we as parents need, is more encouragement.

Considering the costs of private therapy, I wonder if it will be worth it. Will that therapist have the expertise I need? Or will they tell me to do the same things they are doing at school, or that I am already doing? Guess if it's pay as you go, then I can see what happens hey? Not to mention the newly named 'chronic disease' money, which allows you a rebate on up to 5 visits to a speechie or physio (and others), provided they are medicare approved (sounds like hard work to me though!).

For us, the first step will be when I meet with his teacher next week and go through the IEP. It will give me a very good idea of what the focus is on at school, and I can then follow up a bit at home and decide whether we need to be doing more.
We now have a referral to the speech therapy team at the RCH (which is to follow up on a few things that have been requested by his school therapists). I can always ask them about their services.

At the end of the day, I don't want to be looking for a way to fix Ryley and suddenly make things right. But if there is something we could be doing to help eleviate the frustration Ryley is feeling about communication for example, then I should be doing it. Right?

So, maybe the answer is to keep seeking solutions, never ever give up, and to do what is best at the time.
But to keep having fun, and not get too caught up in 'therapising' my beautiful son.

Maybe I figured it out after all?
What do you think?

Thursday, June 10, 2010

Hospital visits and WHAT??

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 normal charts. It is nice to see that he now has the weight he needs to protect him a bit more against those common illnesses. But it is also a bit like saying "in your face medical literature on WHS". It also reinforces that anything is possible with our kids. And, it is always important to trust your instincts. We fed Ryley orally up until he was 6 and 1/2 years old and we don't ever regret doing that. I think it was the right timing to go with a PEG feeding tube when we did. One day, I hope he will go back to oral eating, but right now, we are happy with where he is at.

Aside from the weight gaining thing, we did have all the routine testing done. Everything seems ok, except for his cholesterol which has gone up again. Not good. So, again, we wait to see what happens in 3 months time and go from there. In terms of the Ketogenic Diet, we will stay on it. We are actually going to increase the ratio up from 2.25:1 to 2.5:1. It is very much a case of slowly slowly with Ryley, because the changes in his body are always huge, despite the seemingly subtle difference in the ratio. We have also increased his dose of Keppra, and will continue to increase it over the next couple of months. While we had hoped to not increase his meds, we are hoping the good outweighs the bad and that we can once again get better seizure control. Means to an end, means to an end (I hope!).

So, overall, a fairly positive visit really. We do need the close monitoring still, and we have to follow up on a few things and looks like we are going to be spending a bit of time at the RCH between now and the rest of the year. But that is ok.

While we were down at the RCH we got to catch up with Melissa and Ellie and Liv and Elliott! It was awesome to see them!! We also caught up with Ryley's old physio Jo. She hadn't seen him walking, and she had put so much time and effort and belief into him when he first started school. It was great to see her too, but I reckon Ryley thought "uh-oh" when he saw her, because he kept away a bit!! I think he thought he might have had to start working hard for her..hehe!!!

Ok. Long post hey?
In other news, Braeden seems to have croup again. Oh joy. He is "sore", or so he tells me.
Here is a picture from our catch up at the RCH. Can't wait to see you guys again!

Monday, June 7, 2010

What to do on a rainy day.


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!




Sunday, June 6, 2010

Hello

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.

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