The end of June 2011 Toby finally got his first cochlear Implant, the right side, he was suppose to have both done but that wasn't to be.
It wasn't an easy decision, as its pretty big surgery and for Toby its enormous, he would have to go to ICU as his breathing problems were still a problem, and any anaesthetic could make him stop breathing on his own, not to mention the normal risks of infection etc, Like I said it wasn't and easy decision but it was still one that we didn't really have to take long to decide. With all of Toby's other issues this was really the only one that we could control, sort of, his hearing was the only thing that we could help him with. we already knew that things were going to be much harder for him and we wanted to ease that as much as we could. So we got him booked in.
After a few delays Kent and I found ourselves waiting....and waiting in the waiting room for the surgeon to come and tell us that how he had gone with the surgery, we thought that he must have had both as it seemed to take forever, and we had got to the point where I went to get some magazines to fill in the rest of the time. just as I left the room the surgeon came out, and told Kent that they could only implant his right ear as the left had too much fluid in it and it would be dangerous to implant when there was fluid in the ear, as he could end up with major problems and no possibility of being able to hear even with an implant and we were not willing to take that chance! Although we were disappointed that he only had one ear implanted, we were also over the moon about the possibility that he will soon be able to finally hear our voices.
When he was recovering in the ICU later that day we notice that he was really tight and difficult to hold on to, his muscle tone was all over the place and he was throwing himself back and forward and he was rather unhappy about it all, it took us a little while to realise that he had missed out on his tablets, as he was fasting before the surgery, and this is when we first noticed just how good they were for Toby. he had never missed a dose before so we never got to see what he was like without them, and well.... within half an hour of giving him the dose he was a different boy, so much more relaxed and he had smoother control again, his muscles had stopped screaming and we could hold on to him with more ease. Now we know what to watch for we know just how much benefit he gets from his medication and we can tell when he has grown out of his dose. I'm not a huge fan of giving drugs to kids, but when you see what they can do for kids like Toby, well it gives him use of his hands, all be it not much, but at the same time, so much more than he has without it.
Two weeks later was switch on, The big day, we were taken to a little room where all the external equipment was given to us. Totally overwhelming to say the least! we were give a huge big suitcase full of equipment! and the only thing that goes through your mind is "but he's so small, what am I suppose to do with all of this."
The therapist pulled out his processor (the external part) and I immediately wanted to cry! I knew nothing of these horrid things except that we wanted to make it look funky, so we had ordered a blue one with soccerballs on it. My mind set is and always has been... if he has to have it and we really dont like it, then we make it look funky, the brighter the better. no point in hiding it. so when the therapist pulled out a skin coloured processor I was devastated. It looked hideous, and completely medical. not what we wanted at all. you have no idea how relieved I was when I discovered that the soccer balls was actually a cover, and he had several sets included in that BIG bag, Phew..... funny thing is, our son is just about to hear for the first time and all I was worried about was how horrible it was going to look. I guess as parents we can deal with a lot of things, but there are some things that we have no control over and the way that they affect us cant be predicted.
Anyway after getting over that little episode we were taken into a soundproof room, were we were to trial his implant. ( they don't give you the processor straight away, as the implanted part has to have time to heal. the skin and bone has to heal completely before or it may break down and become infected.)
His Processor was put in place and the testing began....at first it was ok, he seemed to respond to some of the beeps and it was pretty magical to watch, once they got the settings right they tried him with the puppets, and louder sounds. one of the puppets was a big bird. the theory was that if he could hear the sound he would turn to the puppet and then the puppet would do a little dance, he had done this test a thousand times before without any problems. Today he could hear! and when big bird made a noise he screamed, he was terrified! shaking uncontrollably, we had to stop the session to try again later. not quite the reaction we wanted but still HE COULD HEAR! and we couldn't be happier!
We left the Eye and Ear hospital with our giant bag of equipment, and headed for the museum to fill in some time, while we were there we couldn't wait to find a quiet corner to try on Toby's new ear again. this time we got a better reaction, he was in awe of his new surroundings, and he seemed to be looking everywhere, trying to decipher what he was hearing. we had been told that his hearing would be different. that initially it would be just a series of beeps and bops and that his brain had to work out what it all meant. but it was amazing to see him hearing the world for the first time and to see the smile on his face when he realised what mummy and daddy sounded like. All these things that we usually take for granted, we have learned not to. Since Toby came along, Kent and I have learnt to never take anything for granted, we try to take in every little thing that happens, we try to appreciate every smile, every tear, every sunny day, and every sound that we can hear, and we are never going to give up helping Toby to hear all of the beautiful sounds that our world has to offer.