Friday, May 29, 2009

Haircuts!



I finally decided to go and get the boys haircut yesterday. Ryley's was so long, and he has school photos next week, so I thought I better get him tidied up!
Braeden's fringe was so long it was always in his eyes and annoying him, so he got it cut as well! I put the picture of Braeden up cracking it, because, well, everyone thinks he is such a well behaved good kid. I just had to prove that he actually isn't!!

I am also proud to announce the arrival of Jacob and Linda's baby girl which arrived through the night. They haven't decided on a name yet, but I hope to hear sometime tonight! There is a time difference because they live in Latvia, so when I last spoke to Jacob he was heading off to bed. Very exciting! I have seen some pictures and she is beautiful!

My Mum has to go back for more surgery next week because her cancer had started to spread, so please keep her in your thoughts and prayers.

Wednesday, May 27, 2009

I am feeling so blah at the moment.
Which is why I haven't really been motivated to write in here. I start the posts in my head, but then get distracted doing other things.
I am exhausted.
It is a constant battle trying to juggle everything.
Ryley has some very difficult-to-manage behaviours emerging at the moment, and we are trying to manage those. When I tell people his behaviour is bad, they really just don't get it. I guess all they can compare to is their own neurotypical kids who might throw the odd tantrum. But this is nothing like that. By chance I bumped into one of my old clients today and I was chatting to her. Her child has Epilepsy and intellectual disability and she is having the same kinds of trouble as us.
The thing is, that when a child with a disability has 'bad' behaviour, it is usually because they are trying to communicate something to us. It could be that there is a sensory overload of some sort, or it could just be implusive and something they can't control.
In Ryley's case, it is all of the above.
Deciphering it or 'cracking the code' is the hardest part.
But having a non-verbal child makes it almost impossible at times to 'get it right'. Frustrating for both Ryley and us. And poor Braeden just behaves himself because he can see how stressed I am getting.

*SIGH*

So what to do?
I have all the strategies. I know what to do.
Having the time to sit down and really nut out the issues and then devise a plan is what is the hardest part.
What behaviour is caused by communication difficulties?
What part is caused by seizure activity?
What part is caused by tiredness?
What part is because he is feeling sick/annoyed/can't control his feelings?
What part is a sensory overload?
And what part is just 'normal' 7 year old attitude?

Who ever has to think this much about behaviour? Remember the old days-you got a smack or sent to bed with no tea.
If only it were that simple.

Arrrgh.
Remind me to get some respite-and soon. It is crazy ridiculous that the only time we are without the kids is if we are at work. But that is a whole 'nother post!!

Monday, May 25, 2009

Another week has passed us all by. Another year has passed for others (David's birthday today!). We had a great weekend. Ryley is a lot better and I would say almost 100% again. Braeden is good, runny nose, but that is pretty standard for kids his age. Mum had her lump removed, so now we wait for results (which then determines the next course of action-radiotherapy, chemotherapy or further surgery).
We are still waiting on news from Latvia about the arrival of my new neice or nephew.

It is nice to have a lull in events for a while. I desperately hope that this week stays uneventful. We really need to get our house finished. The electrician is ready to go to finish everything, but we aren't! I wish domestic blitz would pop in and finish it-while they were here they could also put in an outdoor spa, a outdoor pizza oven etc etc. Or maybe I could just win tattslotto.

At least it has been raining today. Good soaking rain too. Yay. Just what my garden needs.

Thursday, May 21, 2009

A quick word about comments

It was brought to my attention just recently (thanks Fiona!) that you had to join up with a google account before you could comment. I have changed the setting now so that anyone can comment.
I really have enjoyed the emails and the feedback I have got so far, and want to thank everyone for taking the time to give me the feedback!
So don't be shy about commenting!

Thanks everyone for reading about my precious Ryley and Braeden!

Anna xxx

Just a quick one

Don't have much time today, but did want to come in and say that Ryley is most definately on the mend finally! He has managed the last two days at school and actually slept through the night last night! He rarely sleeps through (as in maybe once or twice a year) so we are really happy!

Braeden has two of his back molars through now which explains his horrible teething moods. Didn't think he was meant to get molars yet, but hey, who invented 'meant to' anyway?

Thinking of Mum tomorrow as she goes in for her surgery. For those reading, please send some positive thoughts!

Tuesday, May 19, 2009

Cough Cough Cough

It's all I seem to hear.
Ryley is still sick and I am home again with him. He has just whinged and coughed all day.
Even going to take and drop Braeden at daycare was a task and a half. Do you know how hard it is to carry two kids (11.5kgs and 13.5kgs)?
I am just so over it.

Probably people will think I am a selfish cow for writing that I am over it.
Sorry for that.
But I don't care.

You see, when Ryley is sick, it isn't just about a normal kid who is not feeling well. Just a cough is not worth worrying about. But with Ryley, he also has secondary infections in his PEG site and in his nappy area. He can't breath properly or cough up the mucous he needs to. Due to the fact that he is on the Ketogenic Diet and his body system works differently, it is harder for him to fight these viruses.
Add to the mix the increase in seizures because he is tired and feeling crap and you have yourself a kid that should probably be in hospital with IV antibiotics.
Just when I think he might be getting better...he gets the viral rash and there is no hope in hell of sending him to school.

Right now he is wingeing because there are no cars going past the front of the house. Not sure how I am supposed to fix that. I did just ask him what was wrong and he grinned at me. Naughty kid.

So when people say I go to work to get a break, I have to laugh. It's true I suppose. It is my respite.
Funny.
Those that work with me know that it is so far from being respite it truly is funny.

*sigh*

I hope my little man is feeling better tomorrow. He does hate being sick. He hates being stuck at home and inside. He has watched so much playschool that he is actually sick of it.
I hate it when he is sick.

Monday, May 18, 2009

Little B.




Thought I might take a minute to write about Braeden, seeing as he is just so gorgeous. He is now 16 months old, which is hard to believe!
Ryley is still sick and has stayed home again today from school and this has totally thrown Braeden. This morning Braeden brought out Ryley's schoolbag for me, only to be told that we didn't need it today.
Braeden was obviously upset that he would have to 'share' me again, but he tried to make the most of it, even going and laying next to Ryley an cuddling him. So beautiful.

Every day we marvel at the things Braeden learns and achieves. It all seems so fast, and we truly think that if we blinked we would miss the amazing things he does. I know that neurotypical kids all develop in this way, but we are used to slow progress, so it makes it so special to be able to really watch Braeden as he learns.

The thing with Braeden is that he thinks he is older and bigger than he is (so true of most kids!). I always thought that having a brother who has a disability would mean that Braeden might be a little slower too.
Wrong.
If anything he is faster at achieving everything. Being able to have the one on one time with him two days a week probably helps. We spend our days together just playing and discovering things. It never ceases to amaze me how little things are so very interesting!

Little B (or Brae Brae) is just the most clever, beautiful, kind, cheeky and naughty kid (not that I am bias or anything ;)) We are so glad he chose our family.

Thursday, May 14, 2009

Head.Done.In.

What a day.

I have never had a more challenging day with Ryley. Today I discovered that having a bigger and more mobile child, does not neccessarily equal easier.

Our visit with the neurosurgeon went really well. Ryley won't need another MRI for 3 years all going well. His syrinx (pocket of fluid in his spine which has occured as a result of his Arnold Chiari Malformation) has actually improved, which was a wonderful surprise for both me and his Neurosurgeon. So there is less fluid in the pocket and the pocket has gotten smallen as a result of this. This seems to be because Ryley is now walking. It should continue to improve the stronger and bigger Ryley gets. So, unless Ryley starts to go backwards, we shouldn't need to see his neurosurgeon again.

We also had a bone density scan and his kidney ultrasound. Both look good, but we will wait for the final reports when we see the Keto team in a months time.

What has worn me out has been Ryley and his behaviour. Now that he is able to walk independently, and is bigger and stronger, he is harder to manage. He wants to walk everywhere which is great on the one hand, but he won't hold my hand, so he just bumps into people and falls over and refuses to go where I want him to go. Funny once or twice, but damn tiring after more than 5 minutes of trying to redirect him. Plus he just wants to stop and watch people walking past because he loves it. And they all stop to stay hello as well.
AAAAAAAAHHHHHHH!!
Trying to get around the RCH was a nightmare today!
In the end I had to carry him around just to get to the appointments, plus he started refusing to walk. Not as easy as it once was let me tell you!

Not only was it tricky getting him around, but it was hard work keeping him occupied while we waited in between appointments. He thought it was great fun pushing chairs over and trying to climb onto tables.
Last night he vomited his seizure meds up, so today, he has had seizures constantly. Hard work for the little man seeing as he already feels like crap. Plus he was just plain bored, so he was purposely having some seizures.

I got plenty of 'looks' from other mothers today. You know the 'looks' I mean?
Every time Ryley coughed (or barked would be a better way to describe it) while we waited for his ultrasound, there was one mother who looked across and then shook her head.
Um.
Ok.
Are you shaking your head because my son is coughing?
Perhaps you haven't noticed that you are in a hospital? Lot's of sick kids in places like this. His cough isn't contagious. But thanks for your concern.

Then I had another one staring at me while I was bolus feeding him some water because he wouldn't drink it (I think his throat is too sore). He needed some fluids in him before his ultrasound and I tried to be discreet. Perhaps she was staring because she hadn't seen someone fed through a button in his tummy before. Or perhaps she thought I shouldn't be hydrating my child in public. Meh.
Again.
I repeat.
We are in a children's hospital. Plenty of children here of all abilities, illnesses and additional needs.

I wonder too if sometimes I have 'social worker' stamped on my forehead. Or maybe I just look friendly (god knows why people would ever percieve that about me-especially today when I am certain I would have looked pretty frazzled).
I had one poor mother pour her heart out to me as I heated Ryley's bottle of Ketocal. It was awful. Her precious little 8 month old son has a massive cancerous tumour that is growing really quickly in his arm. It had started to spread into his shoulder. The doctors had so far been forced to wait to operate until he had gotten a bit older (the tumour had been found when he was only a couple of months old) because he also had a congenital heart defect. So he also needs heart surgery. They were over from Adelaide and she had left a 5 year old and a 2 year old at home with her ex-partner (the father of her 5 year old) and had just been subjected to an abusive phone call from her own parents who had told her she was being neglectful (despite the children being cared for really well).
Yep.
That would be appropriate hey?
It puts things into perspective. Here I was, being told that my son was stable for the first time in 7 years. And here was a gorgeous little baby who has to overcome some unimaginable things. Not to mention his parents who were being faced with things no parent should ever have to face.
It made me glad I was a social worker.
I chatted to her for about 20 minutes.
I hope I gave her an opportunity to feel like she was heard.
I hope I was able to offer her a friendly face and ear for a tiny snapshot of her journey.
Just another amazing mother and child I have met along the way.
I hope that little baby pulls through.

And finally, to finish off this blog entry. I will make mention of the mother I met today who said hello to Ryley..who apparently was an elf just like her. She even pointed out her small ears which meant that she was an elf just like him...!
Aaah you have to just laugh and smile and wonder what drugs she might have been on...and whether she wouldn't mind sharing them...because clearly in her world of fairies and elves everything is as it should be!

Wednesday, May 13, 2009

On the mend

Well lucky I get bulk billed at the GP! I was right, Ryley's chesty cough is up high and nothing more terrible than a normal cough that is associated with the flu. We did put him on a precautionary course of antibiotics, only because with Ryley, you never know whether it will turn into something more sinister. Better to err on the side of caution and all that.
So he went back to school today and managed to last the day, so he must be feeling better.
It is always the way.
I always hold out taking him to the doctor and as soon as I do, he starts to get better!

We had down to the RCH tomorrow to catch up with his neurosurgeon and have his kidney ultrasound. Hopefully all just routine.

Seems like we are forever catching up with medical professionals at the moment. I guess it is all just par for the course, but sometimes it just feels like I see them more than my friends! I know the appointments are important, but it would be nice to not have any for more than a month or so!
In some ways it is good that Ryley is being monitored so closely again. The main reason he is, is because of the Ketogenic Diet (can you believe we are coming up to 1 year on the diet??!!).
It is a little tiring though, all the driving back and forth to Melbourne. Although the new Deer Park Bypass is a dream!!

At least Ryley is on the mend now and hopefully won't have too many more flu/virus thingys for a long time!

Monday, May 11, 2009

Ryley is sick again. Some kind of flu/cough/virus thingy.
I am actually taking him to see his GP, so I am kind of concerned this time. He has a really bad cough, that is up high in his chest, so not in his lungs yet I don't think, but enough for him to have a temperature and be unable to sleep. Poor kid. Between the 4 of us last night, I think we might have managed 3 hours of sleep. Not fun.
I try not to take him to the doctor unless he is really sick enough for antibiotics. He needs to be able to fight viruses himself, so I tend to give him a few days to fight it himself before I rush him off to get medication. He has had the cough for about 5 days and it really isn't getting any better, so I figure a check over by his GP is probably a good idea.

Braeden is still ok, teething, not sleeping, but still well. He has never been to the doctor. He is nearly 16 months old and still hasn't had an illness where he has had to have anything more than Panadol. He has had coughs and colds and a bout of gastro or two, but thankfully he seems to fight it off within a couple of days. Not sure why he has such a strong immune system, possibly because he still has so much breastmilk. Don't know. He is definately exposed to everything because he is at daycare 3 days a week and also has an older brother at school. Maybe I am lucky enough to just have a kid who is always going to be healthy. Fingers crossed anyway!

We have had a busy weekend. Mother's Day was lovely. I got coffee in bed and a beautiful bunch of flowers from the boys. Perfect. Couldn't ask for anything more. Well actually...I wouldn't mind if Ryley was well and we all got a full night's sleep...even 3 hours straight would be nice...

Friday, May 8, 2009

It's been one of THOSE days

*SIGH*

Braeden is cutting about 4 teeth at the moment, with two of his eye teeth just about through. It has been a nightmare. Not only is he waking for comfort feeds every 1/2 hour to 1 hour, but he is so cranky and irritated that he is just lashing out.
Today he bit me and hit me so many times I lost count.
I finally relented and went down the street and bought some Panadol and so, for the last hour or so he has settled down a bit.
He can actually say 'OW' now when he is hurt or not feeling right, so at least I know he is in pain of some sort. Poor kid.

Ryley is so tired too after a big week at school he is just having seizure after seizure.
And David picked tonight to get a haircut which meant he was ever-so-late home.

I am hoping that Braeden settles down after tea (and more Panadol) and goes to sleep. So I can hopefully eat my pizza in peace and find some mind numbingly boring program on tv to watch.
With a bit of luck, my night might actually include sleep at some point.

Thursday, May 7, 2009

The Twists and Turns of life

The past few days have left me pondering life and how much of what happens is pre-determined.
Many moons ago, most people would have turned straight to religion to help them figure out why something has happened. They would have sought out answers from the God they believed in, and this would have somehow bought comfort in their time of need.

Today things are a bit different.

Many people do still turn to religion to try and search for meaning. But largely, we are a faithless society; religiously speaking anyway.
So where do people turn when things don't go how they expected?

I am a catholic, although I probably wouldn't describe myself as a practising catholic. Perhaps it might be better just to say I am a non-traditional catholic, seeing as I do pray and do have a very deep and real connection with God.
Having a child with a disability often prompts people to suggest that I am a "special person" and that "God" only gives "special people" children like Ryley. I find that a little condesecending.
My view is that, sure, Ryley is most definately a gift, he has definately been given to us for a reason.
I can also say the same about Braeden.

I believe that this was exactly how my life was meant to be. It isn't fate or destiny. I don't particularly care for either of those ideals. Too much is unknown about what exists after this life, or indeed, where we came from, so I don't find any of this useful when trying to understand why my child has a disability.

I see so many people who have a child with a disability struggling to understand why their God has made their child exceptional. I have even encountered families whose religious beliefs prevent them from seeking help to understand their child. I have also seen families who have had to hide their child's disability from their church for fear of exclusion and condemnation.
Having a strong belief system, regardless of whether or not it is religious based, surely means that you can see the potential in your child? Sometimes religion is a barrier to giving your child the best life possible, and this concerns me a little.

And so, in amongst all the things that life throws at us, in our lives especially, we continue to draw strength from the things that we believe in.
Yesterday, my Mum was diagnosed with breast cancer.
So yet another twist in the road for her, and us, as her family.
We are all positive that she will make a full recovery. And regardless of what we believe, we are certain that this will happen.

Tuesday, May 5, 2009

Growing

I bought Ryley a new top on the weekend. It was a size 4. When I put it on this morning, it was a bit too small. I couldn't believe it! I am guessing that it is just a very small size 4, but all of a sudden I have found that I have a growing boy.
For all of his life Ryley has been classed as FTT (Failure To Thrive). At first, it was because no one could explain why he wasn't growing, then it became a label that was listed under the comorbitities of his syndrome. Now I am beginning to wonder if he might actually lose that label one of these days.
One of the main characteristics of Wolf-Hirschhorn Syndrome is slow growth or, as it is usually referred to, FTT. It is actually incorrect of doctors to refer to kids/adults with WHS as FTT. It is far more useful to use the terms 'slow growth' and 'short stature'.
And here I am again talking about the use, or rather misuse, of words....!
There is a growth curve chart that is specifically for children with WHS, although many aren't aware that it exists. I will have to dig out the link. It was developed a couple of years ago and Ryley was part of the study that measured growth in kids with WHS up until the age of 4.
What was found, from what I can remember, is that children with WHS do follow a growth curve regardless of whether they are fed artificially or orally. It was interesting to note that even the kids who were 'pumped' with the correct amount of calories, still didn't grow much quicker or bigger than those who ate orally.

Ryley has put on 500 grams in the past two weeks, which is due to us increasing his calories on the Ketogenic Diet. Since starting the diet, he has gone from 10.7kgs in weight to a whopping 13.4kgs. This weight gain has taken nearly a year, but is just HUGE! He is now also 98cms tall, which I think is a height gain of nearly 10cms!
Before he started the diet, he hadn't gained any weight in nearly 2 years, but had grown taller. Most people with WHS are tall and very thin. This is typical of the syndrome.

It is very exciting finally being able to buy bigger clothes for Ryley. It has taken 7 years, the insertion of a PEG and the Ketogenic Diet to finally have people tell us that he has grown (because it is actually obvious now)!

Monday, May 4, 2009

Weekend Fun

What a weekend!

Saturday I always try and put a couple of hours aside for "Ryley and Mum" time. Usually we just go shopping for stuff, or just browsing the shops, and this Saturday was no different. Except first we went and played at the park! Ryley is so good at climbing up the steps and then going down the slide! He literally tries to run from one side of the park to the other! Honestly never thought we would see that day!

On Sunday we all took a family drive to Ararat and had a picnic at the park, fed the seagulls and ducks, and then both the boys had a big run around the park and on the play equipment!

We headed back out to Amphi on the way home and dropped in to see Nanna and Poppa again. David got the four wheeler out and Ryley and Braeden had an absolute ball "hooning" around. Even I braved it and hopped on the back, but I wouldn't let David go out of first gear!!
(There is a long story to why I am so scared of motorbikes...some people know it already, but let's just say it involved a broken collarbone!).

While we were out at Amphi we took the boys up to play in the old diggers holes. They both had a great time climbing in and out of the holes (and falling back into them!!).
I definately have two kids who love the outdoors!

Friday, May 1, 2009

Just 'cos


I took these photos yesterday. I thought I would just put them up because they are cute.
No other reason.


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