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.
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.
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.
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).
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!


  1. What can I say? A truly amazing and surreal day for you it seems. Ryley is sure showing his indomitable spirit in many new ways.
    It is wonderful that with all the things you have to cope with, you can still find the compassion to talk to that poor mother. I hope that doesn't sound patronising, but I am trying to say that you are truly a valiant woman. ( and I'm not saying that because I am your mother ) :)


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