Toby will be 3 years old in a matter of weeks, or days 20 days to be exact, wow how time flies when you are having fun......or trying to.
Toby has been diagnosed with dystonic ataxic athetosis Cerebral Palsy, a long fancy name, a not so fancy diagnosis, it was one that we were expecting but still remains hard to swallow. Basically his brain has trouble communication with all of his muscles and therefore he is really floppy. like a rag doll, in fact the medical world often call it a rag-doll dystonia as when you pick him up, there is no response from his muscles, and if you are not careful he can slip though your fingers! This makes it incredibly hard for him to do most of the things that we all take for granted. He also has an intention tremor, this is a little like people with Parkinism, in that the harder he tries to do something the harder it is for him, his muscles will shake and make the task impossible for him, and as you can imagine, incredibly frustrating for him. We knew that something was up when he didnt meet his milestones, it seemed to take forever for him to roll over and we kept just waiting for him to be able to support his own head, denial was firmly in place when we kept saying "when he can sit" when he was already 12 months old and still not able to hold his head unsupported. eventually it got the better of us and we demanded to see a specialist. The next thing we know we were sitting in in his rooms at St Giles, expecting him to tell us what was wrong, shocked beyond belief to hear that there is likely nothing wrong with him and that we should come back in 3 months to see if Toby was better. Both my husband and I knew better, we were not silly we could see that Toby was struggling with everything, he was only just beginning to roll over was no where near being able to sit up let alone stand and he couldn't hold his own bottle or spoon. But we took what the Dr said and left, hoping that he was right, praying that when we went back Toby would be able to do all the things that we were hoping for.
As the days and weeks passed and there was no improvement in his muscle tone and his ability we were beginning to worry we both knew that we were in for a long road and that Toby was going to need lots and lots of help. Back to the Specialist, we were certain we knew what he was going to say...... we never expected for him to say he thought Toby was Intellectually Disabled, no other input, just come back in 3 months again.
I was horrified, anyone who spend more than a few minutes with Toby knew that he definately was not intellectually challenged! No way, quite the opposite in fact, But he did have enormous physical difficulties. every question that I asked of the specialist was shot down and we were made to feel like horrible parents as we questioned him, he even went as far as to say that I wanted Toby to have CP so that I could claim all the benefits! ha! that's a joke, "What bloody benefits???" We have not seen any yet! needless to say we stormed out tears flowing, I vowed to never see that horrible man again!
After that I got straight on the phone to Toby's Respiratory Paediatrician in Melbourne to tell him the story, he has always had time for us and Toby and I knew that he would understand and be able to help refer Toby to someone better, and better he did. Within about a month we were on a plane too see his friend who happened to be the head of Paediatric Neurology at Monash Medical Centre. Dr Michael, I loved him from the start! the minute that we walked in the door, I was scared as hell of what he was going to say especially after our last experience, but he made me feel comfortable, he spoke to Toby first up and made him part of the conversation, he took in the nervousness of my Mother, (she came as I thought it would be helpful for her to be able to ask questions and understand Toby better) in his stride, and easily answered her questions, helping both her and me come to terms with Toby's diagnosis, he called it "dystonic ataxic athetosis Cerebral Palsy" He explained everything, and although I was devastated to hear that my beautiful baby did have a problem, It was also a relief to have a name for it, and to know what we were heading into, as I said, Kent and I suspected for a long time, so it really wasn't a surprise but it still was not what we wanted to hear, no one ever wants to hear that!.
He offered to try Toby on a medication, it had side effects but it just might help him a little and with Toby, even the tiniest scrap of help can make a huge difference to his life, so we jumped at the chance. The medication would help to stop his drooling, his excessive sweating, and may help ease some of his movements, it was called Benzhexol, and it use to be used for Parkinism. We started Toby on the medication and almost instantly his chest was a lot less moist sounding, but it took a little while longer for us to notice the other benefits. In fact we didn't notice them at all until he had the surgery for his first cochlear implant.
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