Family Life

Family Life

Friday, May 11, 2012

The battle continues

After Toby had his first cochlear implant, it was the beginning of a whole new life for our family. we had so much to contend with, and so much to learn.  While Toby was beginning to understand the world around him he had fortnightly appointment in Melbourne for "mapping" (updating of the processor) as they start of with very minimal settings as you can imagine, if they all of a sudden put it on the highest setting it would be way too much information for Toby to process all at once. so It was turned up slowly. He also had speech therapy appointments at the cochlear clinic, to help us learn how to best help him understand what was going on and what all these new sounds meant.  We first started off with animals and transport sounds, as they apparently make up a large part of the English language, sounds such as, shhhh, Sssss, Mmmm, Oooo, Ahhhh, etc they also show us what sounds that Toby can hear and are sounds that we have to continue to practice with him ever single day to ensure that his CI's  (Cochlear Implants) are working.

 We had so many trips to Melbourne that the Rotary Club of Glenorchy helped us out by purchasing us a new car seat for him, especially for travel as taking his car seat in and out of the car all the time was rather difficult, He has to travel on the plane with a car seat so that he can actually "sit". and that in itself poses a problem.
The airlines will not allow him to sit on my knee as he is older that 2 years. however he is completely unable to sit in a normal plane seat.   so the airlines suggest they have a harness that he can use,  however the harness is not much better than a normal seat belt and does not support him in anyway,  "no way he can sit safely like that"  (remember he's like a rag-doll)  So we have to take a car seat, it is recommended by the airlines and approved for use by the airlines as long as it meets Australia standards,  however most airlines flying out of Tasmanian are regional routes and therefore they will not allow his car seat on the plane!  Regional Express are the only airlines on the coast that will transport Toby, otherwise Jetstar. That's it for Tasmania,  kind of limits our options doesn't it? so we fly with REX.
Toby loves to fly with REX, he knows how it all goes, he waits patiently for the hostess to bring him his chippies,  and if they take too long to get to him he can be heard yelling out to them from his seat. All of the hostesses and pilots that fly into Burnie Wynyard and the ground staff at both Melbourne and Wynyard now know Toby and welcome him on-board each flight.  we are usually greeted at Melbourne with a special car waiting to take us to the baggage claim, bypassing security so that we can get through easier with his oxygen.  Generally the staff are amazing, but for one unpleasant experience I had with the REX Melbourne Airport Manager after a flight that went wrong.   but that story is for another day.

We travelled two and fro to Melbourne for months, all the while going to Tobys normal physio appointments, Early Childhood Intervention lessons, Occupational therapy, appointments with his Teacher of the deaf and the Royal Institute for the Deaf and Blind also had weekly teleconferencing lessons. He had general medical appointments and follow up appointments with his neurologist and another sleep study to check his Oxygen requirements. Life is pretty hectic as you can imagine, between trying to fit all this in, plus find time for therapy at home, time for our other children, time for work and time for ourselves. (whats that?)
But Toby did amazing, he took it in his stride and slowly he learnt to understand the sounds.  I'll never forget the first time he showed us .... we was going for a stroll along the path at the beach, and we passed under a tree that had lots of parrots in it, they were being rather noisy with their chirping, and Toby looked up! amazing,  he actually heard the birds!  not only did he hear them but he knew where the sound was coming from, so he was beginning to master direction,  but then he surprised us again by making the sign for bird.
WOW,  we were blown away.  Times like that really make it all worth while, all the hard work and the long hours, the lack of sleep, really don't compare to sharing a moment like that.

Toby was booked in to have his second implant, his Left one. for November 2011, it was a little while later as he had infections in his left ear and they really needed to make sure that it was OK for him to have it done. one attempt seen him actually taken to theatre and all the prep surgery done, before the surgeon noticed that he had massive infection in his inner ear and they could not proceed.   That was so incredibly heartbreaking.  To watch him go through so much suffering post surgery and all for what seemed like nothing,  unlike the first OP he was in so much pain this time. he had had a lumber puncture at the same time at the request of his neurologist, as while he was already anaesthetised he wanted to check some tests for Toby's neurology. seemed simple enough, but Toby got a spinal headache, and screamed for hours, we were not sure if it was from the infection, after the Drs had played around in there or from the LP,  didn't matter it was enough to make us doubt our decision to go ahead with the 2nd Implant. However once we got back home and things settled down for Toby we realised just how far he had come and we really did want to give him the best, so we booked to try again,  November was a success!.

Also in November we were given the all clear from his last sleep study to trial Toby off his Night Time Oxygen. all his numbers were looking good finally and we were more than happy at the prospect of finally getting rid of the oxygen. We had a family holiday booked for December in Western Australia, and we really didn't want to take the oxygen with us, so we set that as our ultimate goal.  to be totally O2 free for our trip.   and guess what?....... He made it,  and without any major dramas. (Insert BIG smiles here)  this was a huge milestone for us all.  finally it was all starting to come together, and our baby boy was beginning to experience a whole new world.

It was also around this time that Toby got fitted for a special suit called a Second Skin.  I will go more into this in the next post. but it promises for many more exciting things to come.
He fly's so much he could be a pilot if he wanted!

1 comment:

  1. Hi Nessie, I kind of stumbled upon your blog by accident - but was captivated by Toby's beautiful smile. I have one 'healthy' daughter who's 5 (nearly 6) and she was born early too - though not nearly as early as 4 of your kids!!! ... She was born 29 + 6, and her name is Chloe (same as your angel)... I know that this blog is mainly about Toby - BUT I was wondering how things were going with the rest of your family - in particular Larissa. I hope that you have been able to arrange to re-unite your family.