Tuning her ears

We were looking forward to Faith getting her new hearing aids and seeing how they make a difference for her...with the help of Leo my eldest we chose pink coloured hearing aids (how I wish they let adults chose coloured hearing aids instead of the boring tan or silver coloured ones !) So when her appointment finally came through to get fitted we were looking forward to it. She was 10wks old when she got them. We watched patiently for an hour as they tuned it to her levels of hearing , trying the moulds, getting new ones done as they didn't fit well, watching them put tubes in her ears to try and record feedback levels etc etc. .she tolerated them and even fell asleep during it as it was rather boring for her! We didn't need to learn how to look after them as We already know with our own aids, we were given a bag with various things like battery checker, puffer, cords to attach hearing aid to clothes so you don't lose them, double sided tape to tape the aids to her head! Yes you heard right...basically sellotaping the aids to her head!!! I asked I'd she was being serious! Needless to say when we tried it after the umpteen time off the aids falling out Faith expressed her dislike to being taped to the aids by crying loudly and it started to make her skin go red and react to it so I stopped it. The bag also had a case to store the aids, pointed pen to open the child proof cover over the battery area, her battery book and other bits and pieces. Quite a good idea to have a bag like this as it keeps everything together.

As she was sleeping when they first put her aids in we didn't see any reaction but they told us it will happen when she is more awake so off home we went. As we walked down the hospital corridors we watched her face for any trace of sign...Nothing.

We got to the car and she woke up so we spoke to her and watched her reaction. Nothing.
We got home and the boys were so eager to see her new aids and were asking if she could hear them now. We had to explain that we didn't know yet and that it would be a long process etc. They spoke to her and she did her usual smiles. They clapped next to her ears. Nothing.
Lucas disappeared then came back with his tablet and switched the music on next to her ears.....Nothing.

As the days went by , we watched, waiting for that moment that she showed us that she could hear, going round the shops where there are various sounds including alarms. Nothing.
I was feeling dejected about it all, it was not what I expected. You read on social media about parents telling the delight of seeing their child's reaction to sound wither is a beaming smile, or crying or a shocked look it didn't matter as long as it was a reaction. You see the videos of those children and their first reactions and its so heart warming to watch, that was my expectation. That s what I thought would happen when she got her aids but instead we got nothing.

Her TOD (teacher of the deaf) came to the house a week later to see how things were going, I explained and she said that in some children they don't react the first time, that they need to go back to have the sound levels adjusted to be made louder, told us to hang in there and keep doing what we were doing which was making her wear her hearing aids as much as possible even if she wasn't getting much benefit from them.she needed to get used to them.
Few weeks later we went back to hospital to get them tuned and when we went through the questionnaire (they have a huge list of questions that must be answered on every visit - questions like "does she turn her head towards the sound?" "Does she react to loud noises near her" ) after the 10 question with the 10th reply of "no" they stopped asking as it was clear she couldn't hear. They adjusted her levels, redid her hearing tests and they showed the same levels as last time which was in the 90 -95db loss range (profound).

So back home we went, back to the daily routine of our chaotic family life. We have been closely watching her and its quite hard at times to know if her reaction is due to sound or not... she definitely can hear something as she blinks fast at some sounds but we have discovered that she does the same reaction when she doesn't have her hearing aids in and she can see you shaking the rattle she will blink fast...at a recent appointment with the TOD & SALT we went through some sheets where they tick boxes to see if she is on par with her development from the listening side... It shows that she is not making any progress and is still at the 0-3mth stage of her listening and receptive and the TOD says that shows that her hearing aids aren't helping her much so its likely she needs them turned up even more or there is a stronger hearing aid than the current one she has that may be more suited to her needs so its just a wait and see what's the next step. Meanwhile she is making progress in that she now maintains good eye contact, responds to your smiles, and has become very vocal in making noises ( no recognised sounds) as she can feel the vibrations in her throat which is a great thing as she is becoming aware that she has a voice! A rather loud one!

After continuously losing her hearing aids, putting them in at least 100 times a day I was recommended by another mum to try hearing aid headbands and they have been fantastic in keeping the hearing aids more secure, and fit better. We now have 3 different designs! Best invention ever and I think all babies should have these...much better than double sided tape!!