The calm between the storms


Last week I was a wreck. I was depressed and stressed. Not unusual for me it has to be said but it was bad. I was really struggling with the idea of cochlear implants, mainly the operations themselves, and the timing. Or the lack of timing as nobody seemed to be able to tell me when they would be.

My body reacted (as is typical) and I got poorly.

Then this week we had assessments all day Tuesday and Wednesday. They were hard and draining. I was ruined on Thursday.

But today I feel better.

We learnt a lot this week and most of it has put my mind at ease.

Harriet has been referred for gromits. She had consistent fluid in her ears and it needs to be drained so they can identify how much of her hearing loss is sensory neural. I am actually excited about this. It is an operation, yes, and general anaesthetic, but it’s routine and it’s quick. And it might mean she can get access to sound. She’ll likely still need implants but at the moment, even with her aids in, she can’t hear anything. The thought of her being able to get access to any sound, even just very loud sounds, fills my heart and soul. I am excited.

William’s results show that what will probably be recommended is a cochlear implant for just his left ear. His right ear is doing OK with just the aid. It’s uncertain whether this will go ahead because of funding. With cuts etc they need both ears to require implants before they will do just one. However, there are always exceptions. The idea of him having just the left implant makes me feel so much happier about him having them at all.

After the operation they wait 4-6 weeks before switching the implants on. Then they start very low and take another 4-6 weeks to reach full volume. That’s a month with no sound and another month or two with reduced sound. And, even when the implant is at full volume, the sound is different to that you would receive through ears or through a hearing aid. The brain has to learn how to interpret these new signals and messages. While William is deaf, he accesses sound through his aid and uses speech to communicate. It’s not perfect but it’s quite a big part of who he is and of his relationship with us.
So, as you can probably imagine, the idea of him being without sound at all is very, very stressful and frightening for us.
If he just gets his left side implanted then this won’t be an issue. He will still access sound through his right, aided ear. And if and when that ear needs implanted, he will already have access through his left. I cannot tell you how the thought of this makes my heart soar. I just hope funding doesn’t become an issue.

The last major thing wet found out is timing. If the operations do go ahead they are likely to be in December. Maybe early, maybe middle. As I’ve said before, we are getting married in late December. And I need my kids there.

All this information has calmed me, reassured me and, for the first time in a long time I feel happy.

We have a lot more tests to go thorough and obviously Harriet’s gromit operation. And no doubt they will be storms of stress and worry.

But for now, I’m calm.


4 thoughts on “The calm between the storms

  1. I’ve just found your blog via mumsnet and I must say its so encouraging to read what you’ve written and feel like I’m not the only one! I have a deaf 2 year old daughter (with cochlear implants) and a hearing 3 month old daughter. Having a hearing child has reinforced for me just how much harder it has been learning to communicate with my deaf daughter. We try to sign when we speak although she’s doing so well with her implants that I often get lazy and then I think to myself – “are you really going to let a piece of technology as fragile as that be your only means of communication between you and your child?” and I try to learn a few more signs and work a bit harder but it is hard, and it is constant in a way that my friends with hearing children will never understand but its also just that little bit easier knowing I’m not the only one so thanks for writing your blog 🙂

  2. Both my sons are deaf (aged nearly 5 and nearly 2) and both have bilateral CIs although Noah, the eldest, had them sequentially at 2 and 4 years old. He starts school tomorrow and has the speech and language of a 6 year old. CIs are amazing but also terrifying (the op) and agonising (the assessment process and decision making) and hard work (learning to hear with a CI). Our boys have both had grommets as well so five operations in total. Phew. It was worth it. Elliot, the youngest, is still having his CIs mapped and programmed but we are confident he’ll do just as we’ll as his older brother. I forget Noah is deaf when I hear him singing along to CBeebies CDs from the back of the car. Feel free to email or tweet me if I (we) can help with anything. Wishing you all the best. Matt

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