It has been three weeks since Harry was Switched On and we have now had two mapping sessions at the CIC. Our last session was on Thursday and it was pretty low key. This is really positive though as the levels they are increasing Harry’s sound to have not changed dramatically since the last session which indicates they are very close to getting an accurate reading of the right levels for his age.
Based on my observations of his reactions and behaviour, the audiologists and speech therapists are thrilled with his progress. He is turning to sound and in some instances voices. He is verbalising the entire time he is wearing the implants and his sounds have varied pitch and tone. This all adds up to a strong recognition of sound and gives him a strong start in catching up with his peers in speech.
For me the week has been unbelievably frustrating. It has tested my patience incredibly and I can only put it down to the magnets. I have tried so many different permutations of inserting the unit into the Joyband to ensure that the coil does not pull the magnet off. Currently I have turned the band upside down and inserted the processors through the hole that was the bottom for the battery. I then place the left processor back to front so it sits further away from the magnet site under his skin. The left magnet probably falls off every 10 mins at the moment and with the bonnet on his head as well it not always a quick manoeuvre to replace it. But the bonnet is still required to stop him from grabbing them and pulling them off.
I have had to completely give up on him wearing them in the car as with little to keep him occupied he has plenty of time to work out how to get them off and in his mouth. They are apparently splash proof but I am not keen to allow him to work out how much sucking constitutes a splash.
My friend Jane, a talented seamstress and designer, has been churning out new versions of the bonnet for Harry over the last week. Actually I discovered it is really a pilot’s cap, so sorry Emily Blunt we are streets ahead of you. For those of you who are interested in the technical details Jane has replaced the string under the neck with a strap and popper button which has stopped the chaffing from the wet ties after each meal. She has also made the caps in significantly smarter and cooler fabric choices so he can co-ordinate with his outfits. A big thanks to Jane and Miles for being the model.
I have one last ditch at a solution for keeping the CI’s on and saving my sanity. A website set up by a Sydney mum with a bilaterally profoundly deaf son Henry. She has called her site Hearing Henry and has made some of her own headbands which allowed her son to get through the first year wearing them constantly. I was very moved reading her blog as she describes moments I have also experienced. Big thanks to Maxine in London who sent me the link to Hearing Henry and who obviously has better Internet searching skills than me.
3 responses to “Three weeks post Switch On”
Hollie, my heart goes out to you. What a struggle. But great to read that Harry is responding….turning to sound and verbalising. I really hope Jane’s bonnets help….and the headband ideas from hearing Henry’s mother.
Thanks Hollie it is really nice to keep hearing Harry’sprogress. Well done you love Maddy
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