Saturday, June 27, 2009

How to keep kids out of the cold weather

Ryley is finally on the mend and is pretty much bored out of his brains. This is ALWAYS a good sign though, so I am actually relieved to have him whining and wanting to do something!
It is far too cold here now for him to be outside so I decided to make some playdough and see how long that would keep them amused.
Turns out it keeps them occupied for over an hour!
Ryley is really good at rolling the playdough into a long snake. I help him poke his fingers in, and he is getting better at squeezing.
Braeden loved eating the playdough and squishing it and using a plastic knife to cut it up and stab it.

School holidays here now, so the kids are going to have love playdough a whole lot more!!

Before I finish the post, I just want to say a big thanks to all those who have taken the time to message us while Ryley has been sick. It means a lot to know there are people out there thinking of us xxx

Wednesday, June 24, 2009

Fluey bug strikes again

Ryley has been battling a fluey bug for a couple of weeks again now. Poor kid has spent the last few nights awake coughing. So he has missed the last two days at school. Lucky it is the end of term I think! Poor kid. This time of the year is so hard for him. As soon as he gets a cold/cough it just gets worse and worse. For the first 3 years of his life he used to spend time in hospital with pneumonia. Luckily he built up a bit of immunity so hasn't had to be hospitalised for chest infections for the past 4 years or so.
But I guess given the fact that he is more prone to respiratory illness we have to be really careful. Plus his whole body system works differently now due to the KD so the poor kid just battles and battles.
Not fair.

I wish he could get a break from feeling like crap all the time. Time to start avoiding sick people like the plague for a while I think. It is hard to avoid coughs and colds, but if we can, then we definitely need to!

Guess that is why we are usually hermits at this time of the year...!!

Saturday, June 20, 2009

Through his eyes

He is the sibling.
The one who can do no wrong.
He is 'neurotypical'. Developing normally.
And he is the one who doesn't miss a single thing.

He watches as I struggle to get Ryley into his carseat. He jumps into his without a word. Waits patiently, anxiously, with a worried frown on his face. He is relieved when finally Ryley is clicked in. He passes Ryley his cup.
He almost is saying: take this cup and sit down and behave, stop being naughty.

He knows that Ryley needs help with most things. He brings his shoes out for him, tries to put them on his feet. He brings out nappies, he offers his food. He only protests a little bit when Ryley takes his balls/books/anything.

When Ryley won't take his medicine. Braeden asks for medicine. He knows Ryley will take his then.
He knows when it is all too hard for his Mum. And he snuggles in and strokes her hair and asks for "there", which is his breastmilk.

Braeden is 17 months old. Already he understands that his brother is different. He doesn't care. It's just how Ryley is.

Siblings needs just as much attention sometimes as what our kids with disabilities need. They need to know that they don't have to worry. They need to have lots of fun and not spend too much time being serious.
So we spoil Braeden. As much as we would spoil Ryley, but in different ways. Our fear is that Braeden will grow up thinking he has to help us care for Ryley. But he doesn't.
Siblings tend to be worriers. They often feel like they can't misbehave because it would stress their parents out even more.
There is some very good information at this website:
Braeden is an amazing little kid. He loves his brother unconditionally. We are so proud of him!

Tuesday, June 16, 2009

One year today

It seems like an eternity.
It seems like it was yesterday.
How can the one event that changed Ryley's life be the cause of such a contradiction?

The Ketogenic Diet is something I haven't written specifically about yet, and I don't plan to do it in this post.
Those close to us will know that starting this diet was the last resort for Ryley. There were no more medications to try.
We had tried them all.
We were hedging all our bets on the diet working. But at the same time we didn't dare believe that it would.

A 50% reduction in seizures? We prayed that this would be our outcome. 50% of 400 is only 200 right? We would have been happy with this. It would have meant at least some relief for Ryley from the constant seizures plaguing his tiny little body.

We hoped for a miracle. Held our breaths as we wished and wished and wished.

And it worked.

Better than we could ever have hoped.
No, we don't have full seizure control. But on a good day, we have a 95% reduction in seizures. That roughly equates to 20-30. And he only has them when he is really tired, usually at the end of the day.

He is now walking.
His weight has increased and he is now 14kgs! Which is a weight gain of nearly 4kgs! This is a massive weight gain for a kid with WHS!

The diet itself is really hard work and before Ryley had everything through the PEG we were measuring and weighing food. We are still measuring and weighing, but it is only formula, so it is pretty hard to get it wrong.

We don't know how long Ryley will stay on the diet. We still have lots of room to improve it for him. So one day he may be seizure free. We don't expect him to be ever seizure free, but it is truly amazing to see how far he has come.

So while the past year has gone quickly in some ways, in other ways it hasn't. What I have left out have been the terrible infections he has had (some very serious), the struggles with his health, and the stress of managing the health of someone whose whole body system has changed. There are very few health professionals who know much about the Ketogenic Diet. In fact there are basically none in Ballarat. Sometime half the battle is advocating, educating and explaining. But we won't ever stop doing that.

Here's to another year. One that is filled with so much hope. Sky's the limit really.

Saturday, June 13, 2009

SAINTS rule...

At the start of the footy season (AFL) David and I agreed that whoever wins out of Carlton and St Kilda will be who Braeden barracks for. I barrack for Carlton (BLUES) and David and Ryley barrack for St Kilda (SAINTS). Last night the Saints won (only because Judd had a broken nose though!).
It didn't take long for all the footy gear to come out.


Wednesday, June 10, 2009 Why not?!!

This was where I found Ryley the other morning.
I had gone to get dressed and get the kids clothes out so I could dress them for school and daycare.
It had gone suspiciously quiet and when I went to look for them, this is where I found them!

Ryley had climbed into the bath on his own! We know he loves the bath, but jumping in with his clothes on...?? Very funny and very clever! He was quite proud of himself too!

Thursday, June 4, 2009

Remembering the beginning...(Part One)

As we rapidly approach the one year mark of Ryley being on the Ketogenic Diet, I have been busy reflecting on the journey that is Wolf-Hirschhorn Syndrome.

For those who never got to read Ryley's first blog, you are probably unaware of the whole diagnosis process that we undertook. So I thought I might revisit the beginning and reflect on what has become our very beautiful life.

Ryley was born at 40 weeks. I had spent the previous two weeks in hospital with pre-eclampsia and was being closely monitored. The doctors were reluctant to induce me before my due date because Ryley was 'small for dates'. I was finally induced and after a very traumatic birth (even thinking about it still makes me want to cry), Ryley Jack arrived into this world on the 5th Febuary 2002. He weighed 6lbs 7ozs and was 49cm long. Not so small after all!

Right from the start, we had trouble with attachment and breastfeeding. Ryley couldn't ever latch on and suck, so I was being 'milked' (single most humiliating experience of my life) so that he could get my colostrum. I was forced into comp feeding him with formula because his blood sugars were low, and this was the first instance were I felt like I wasn't a very good mother (the first of many).
I recieved very little support with breastfeeding and this is disappointing. I did continue to express milk for him for 8 weeks, at which point I switched to formula. This was because he was throwing up much of the milk I managed to express and he wasn't growing.
I would love to see more support for mums who have difficulties with breastfeeding. Particularly for those who have a child with a disability. I hope I can one day provide that support.

While we were still in hospital, during one of the routine checkups, a doctor noticed that Ryley was missing his red reflex in his right eye. Ryley also had hypospadias. So began our journey with the medical profession. A world we had, so far, no knowledge or real contact with.
Our first experience of a specialist was horrible. He was an eye specialist, and basically told me that I must have done something during my pregnancy that has meant that Ryley would be blind in his right eye.
Way to go doc.
Turns out you got that one wrong.
I didn't go back to him. Instead I sought the opinion of a very expensive, but very excellent opthamologist at the Royal Children's hospital who reassured me that I didn't cause the problem with his eye, that it was more likely to be part of an overall syndrome.
Well at least it wasn't my fault right?

Ryley has something called Persistant Hyper Plastic Vitreous (PHPV) in his right eye, which basically means part of it hadn't formed properly. He also had a cataract in it, and a tear-shaped pupil. At the age of 4 months he had his lens removed to help release pressure. He is completely blind in that eye. His pupil is slightly smaller than his left one, but both move together and because he has always been blind in that eye, he doesn't know what he is missing out on. He does have trouble with depth perception though, which has only really become a problem now that he is walking.

At age 4 months we saw our first Paediatrician. He ran chromosome tests and the results showed that Ryley "had extra material on chromosome 4". That was it. There was no other information. The geneticist couldn't tell us much either really. So we still had no answers.
By this stage, Ryley was classed as Failure to Thrive and developmentally delayed. I was made to feel like it was my fault.
At the age of 10-11 months we saw a gastroenterologist who started treating him with reflux medication and diagnosed severe Gastro-Osophaegel Reflux Disorder. This is something that he still has, and is still medicated for-6 years later. We also saw a dietician who told me to keep persisting with the solids and that there was nothing more I could do.
This was despite me taking him to emergency departments several times because he hadn't drank or eaten for whole days at a time. He was so so tiny, yet no one ever seemed concerned.

Even though we had started seeing a new paed and various specialists at the RCH, no one had been able to tell us why Ryley was the way he was. It still felt like it was all my fault. Yet that gave us hope to, that maybe if we were better parents, that he would be fine.

When Ryley started having frequent seizures at around 13 months, I pushed to see a neurologist. I had seen the seizure activity for a long time, but it had always been brushed off as being a startle reflex. Finally I got someone to listen to me, and by 18 months Ryley started on his first seizure med, Epilim. When he started his seizure meds he was having a seizure a minute. That seemed like a lot at the time. But now we know they can get a lot more frequent than that!
Developmentally, Ryley was still delayed, but he was rolling and sitting and had a handful of words. He lost all his words when the seizures were at their peak. The only one he has ever gotten back is "mum".
Our neurologist (who we still see!) thought that Ryley presented with the features of a someone with this rare syndrome called Wolf-Hirschhorn Syndrome. It was a chromosome 4 syndrome. He felt it was worth getting FISH testing done and for both me and David to have the testing done too.
We agreed.
The testing came back to show that Ryley had a microdeletion on chromosome 4 in the critical region for Wolf-Hirschhorn Syndrome. The extra material was from chromosome 8.
David's chromosomes were all clear and normal.
Mine weren't.
I have a balanced translocation of chromosome 4 and 8.
It explains everything.
So it was my fault after all.

Ryley was 2 years old when he got his diagnosis.
We finally had an answer that explained everything.

After 2 long years of not knowing, not understanding what we were doing wrong, we finally could start to understand WHS and Ryley a bit more.
It was the beginning of the next part of our journey.

I haven't even covered half of what happened during those first two years. But this is just a little insight into how things evolved for us. I hope to continue writing about our journey over the next few months-there is lot's to write. Please ask any questions, I would love to answer them!

Before I finish up this blog post, I am pleased to say that my Mum has come through her second operation well. A full body scan and bone scan has been done to check for more cancer and it has come back clear! So that is great news. Now we just wait to see what treatment she will have and will continue to support her through it!
Thankyou to everyone who has supported us all so far. It means the world to us!

Monday, June 1, 2009

The Bedroom

We finally relented on the weekend and bought a car bed for Braeden. Our current sleeping arrangements are this: Braeden and me sleep in the spare room and Ryley and David sleep in our room. This is mainly because it has just been the easiest set up. Braeden still feeds umpteen times a night, and Ryley also wakes often.
But it is something that we can't have forever.
The top picture is Ryley's bed, and the bottom one is Braeden's. Ryley has had his car bed for years and sometimes sleeps in, sometimes doesn't. Depends on how he is feeling.
Braeden did sleep for a couple of hours in his bed at least, and Ryley slept the whole night last night (that doesn't happen very often!).
The plan is to ease Braeden into his own bed gently. There is no rush.
Co-sleeping is a very important part of my children's upbringing and I would hate for them to ever feel distressed through the night (although obviously this will happen due to nightmares). Co-sleeping is still somewhat a subject that people don't talk much about, but for my generation of Mums, it is something that is slowly becoming the norm again. It is so much easier!
But it isn't for everyone which I can also understand. Everyone chooses to parent differently. Nothing wrong with that.

Today, I was so proud of Braeden.
We had to pick Ryley up from school early because he had vomited his feed up.
I let them both walk from the school entrance to the car. Braeden raced ahead like he usually does. Because he can. And Ryley just followed at his own pace.
Ryley had stopped about 2 metres away from the car because he was tired, and I watched with absolute joy in my heart, as Braeden walked back to Ryley and grabbed his hand so he could help him the rest of the way.

Braeden is so beautiful and caring. Even at such a young age, he understands that Ryley just needed a hand.

Moments like these are the most precious.


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