Family Life

Family Life

Saturday, November 29, 2014

Fighting spirit

After a full on week of discovery, some good results some not so good, this family is taking a well earned break, and a trial camping trip, in preparation for our upcoming adventure holiday. We took off to the beach for a night to chill out, & to ensure that everything "works". I'm a controll freak and I need to make sure that everything is 'just right' not easy to do when you are taking off for a month camping around Australia, but I'll do my darndest to make sure it's all great. 
So just after I'm admitting to being s controll freak I'm now going to tell you just how out of controll our lives really are. 
So Toby, Larissa & I all headed to Sydney to the Royal Institute of the Deaf & Blind Children RODBC where they put us up for the best part of a week to do some assessments on Toby, to hopefully assist him and his teachers for school next year & for setting up his eyegaze computer and for us to best help him with his hearing and communication.  Communication is a huge thing for us, given Toby is deaf and non verbal he has never really had an issue getting his needs across to us. But those that dont know him struggle to 'talk' to him and understand him and he can't just 'ask to go to the movies' or something outside of what we pre empty for him. For us this is unacceptable. We want & have always wanted him to be able to communicate as effectively & independently as possible for him & that's why he's soon to get a super computer that he can use with his eyes.  But currently he has a special book. A PODD book that uses specialized pictures to help him tell us his needs but it hasn't been working that well. 
This week we found out that although his actual vision is ok he has a Cortical Vision Imparememt. Which means that his brain struggles to understand what he is seeing and it can be hard especially in times where there is lots going on & lots of noise for him to make sense of what he is seeing therefore his current PODD book, just won't work for him, there's simply too much information on each page, makes sense, that's why after 12 months he is still struggling to use it propperly. 
Yet another "diagnosis" yet another thing our poor little man has to coap with, but for us this diagnosis although crappy, is kind of positive. It explains a lot!  It's what I knew for a while, without actually knowing what it was. I knew the book was too much & have been fighting with speech therapy for a long time over it so in a way it's nice to know I was right & now we have the proof and can focus our energies towards the right way to el Toby!   That was discovery number 1!  That was ok.  I can deal with that, something not so good, but not so bad either. 
The next discovery....... Not so good. 
While we were away Kent stayed home & was off to the Drs for an ultrasound on his hip.    He's had inconsistencies with his pain since having his hip replacement in June. He was recovering well but then started to get more intense pain, we were worried it was the return of his cancer and he went off for X-rays, ct scans and bone scans. Amazingly all came back clear for Cancer in his bones, we wre greatly released but still concerned that something was amiss as he is still requiring lots of pain relief & struggles to do most things.   
This week he went off for an ultrasound after he pushed the doctors saying it feels like a giant "corky" something has to be up!   
The results weren't great. They were horrible. Although one could say it was expected it's still Another huge blow to our little family. It showed 2 small metastatic densities mixed up in the scar tissue. The cancer is now in his skin cells. He can't have any more radiation as he's had too much for that site, & we aren't interested in chemotherapy until we get back from our trip as he wants to be as fit & healthy as possible. & chemotherapy would make him Ill & potentially even hospitalize him while we are away, it's also not guaranteed to do a lot anyway so we decided to take the risk.   A crazy risk, one should never have to decide between a family holiday & chemotherapy,  it just sux!  There is no other word for it, no more to say!   It sux! 
So after that week we have taken time out and taken to the beach one of our favorite places. Time to just be! 

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