Nerds

Had a nice day with the duo today. We hit up Great Yarmouth Tide&Time museum. Museums are the blood and bones of our little family. I remember having five month old Alex in the sling and the streaming rain at Llanberis Slate Museum and realising this was the third time in his tiny life he’d been there.

Here again

Any way, Alex recently took his first steps at the Bridewell Museum of Norwich so reckon that’s another fan in our foursome.

So off we trotted (whinged,  cajoled) to GYTT and obvs had to stop for a spontaneous(bribe) trip to the park where Alex’s sense of adventure surpassed his abilities.

Sun’s out, bum’s out

Honestly, have you ever seen anything more geeky?

On to the museum then and much tentative walking (Alex is starting to be able to stumble between furniture Bambi style) and many attempts to answer William’s 8000 questions about smoked mackerel.

Ahoy

Came him via Waitrose where W slept and Alex and I took selfies.

Just your average day, really. Thought it’d be good to remember those as they are usually happily forgettable.

Deaf as a post

Things still feel a little raw with Alex and his list of woes, but his hearing is getting there.

Alex never passed his hearing test that they have done when they’re first born. I wasn’t too worried because I had other things going on at the time (ie, being shamed in to breastfeeding and, you know, bits dangling etc). Anyway, I was asked to go back later during all my free time on Mat leave.

First hearing test:

Had to bring William. Hadn’t twigged this was entirely inappropriate. I had to keep William and the new-born baby absolutely still and silent for about forty minutes. What an absolute joke. I was sweaty, stressed and upset and had to reschedule as they couldn’t get the result they needed.

Second hearing test:

Took the hint and left William at home. They set Alex up with wires behind his ears with little pads attached to his beautiful fluffy hair. He had a stinking cold and was breathing like a freight-train. They fussed and fidgeted wires and Alex lay placidly and let them but still no results. They ran clicky sounds through the wires and measured his responses through the computer. They couldn’t get the responses they needed. It was suggested that maybe his cold meant he couldn’t hear as he should.

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Momentarily snot-free

Third hearing test:

We go back again. He still has a cold. He’s already been in for a tongue-tie snip and I’m fed up with being in and out and worried that something is really the matter. More tests are performed in stuffy silence. I feel tense. He’s eventually given the diagnosis of glue-ear. This is nothing major and I’m relieved. I’m referred to ENT and sent home with a leaflet. He’s about four months old by this point.

 

Time passes. He’s now ten months old and our lovely health visitor comes to do his one year check. I tell half-truths and bluff Alex a pass. He shouldn’t have passed. He wasn’t sitting up. He wasn’t talking or babbling. He wasn’t crawling. He wasn’t playing. He couldn’t say mumma or dadda. I mentioned the hearing problem and she agrees to chase it up. She does. They’d accidently discharged him.

Fourth hearing test:

Alex is now 13 months old. We sit in a sound-proofed room and kind, lovely, patient audiologists put more wires and sticky pads on his beautiful blonde curly hair. Alex patiently, placidly sits another test he probably won’t pass. He doesn’t. His hearing is so bad that he can’t hear a phone ring. He’s never heard letter sounds or dogs bark or horns beep or water drip or rain fall or music play or my voice or his brother’s singing or his dad’s 80s rock.

ENT:

He’s now 14 months. I see the consultant in ENT. Alex is offered three options: 1) wait it out- he will grow out of glue ear by ‘twelve at the latest’. 2) Get grommets. 3) Get hearing aids. No way was I going to wait it out. No way was I going to let me little tiny quiet diddy boy go under general anaesthetic. Hearing aids, please. In and out in sub-5 minutes.

Fifth hearing test:

I sit with Alex on my knee in the sound-proof room, again. He has headphones on and a patient man with the oddest job in the world is showing Alex toys. The lovely audiologist is playing sounds in to the headphones from a booth outside the room. She’s behind a two-way mirror. There are TV screens to Alex’s left and right. She plays a sound in his right ear and, if he turns, she ‘rewards’ him with a picture of something funny on the TV screen. I dread to think how many he misses. She comes out with a chart showing his hearing is still as bad as it was at his last test. Now she knows what setting to put his hearing aids at. The next job is to make a mold of his ear and to choose which colours he wants both in.

Between measuring and fitting- bad times.

Christmas was in between the making and the fitting of his hearing aids. Those were long weeks. As Alex’s friends/mates’ babies of the same age were starting to walk, talk, babble and explore, Alex sat still, hunched and very very quiet. I still have some(lots) of guilt about the fact that I let him be like this. He was easy and William was full-throttle. Alex would sit meekly in his buggy and watch William hare about and I let him sit. People had started to notice he was different. Comments were made. I am sure they were well-meaning, but my tiny, silent baby was already troubling me. I didn’t need to hear about what google searches had suggested might be ‘wrong’ with him. Christmas 2015 was the worst. Without work to occupy me and friends to love me, I began to eat myself. I was convinced he had cerebral palsy. I was convinced my wedding ring was bringing me bad luck so took it off and hid it. I wasn’t sleeping. It wasn’t until I got back to work and, during an inset day, voiced these things to my funny, clever, kind and protective friends at school that I realised how peculiar and insular and bonkers I had got. Each friend had something wonderful to say and by the time we had all not listened to ‘Life After Levels and Data Training’  I was feeling more myself again.

The fitting:

I called in my reserves: my mum. She came sweeping up, filled the freezer with food, emptied bins, cleaned windows, read the boys’ books and came with me to Alex’s appointment to have his hearing aids fitted. I had taken the morning off work and I couldn’t bear the thought of sending him to the child-minders’ afterwards so mum was there.

We were back at the audiologists. Alex was on my lap and my mum was in the chair by our side. The audiologists gave grave warnings about how Alex might be upset, or  might try and take them out or might cry or might be fine or might become clingy. With that, she skilfully maneuvered  them in to his ears. I said ‘Hello, Alex’. He turned on my lap and looked up at me and beamed. Mum cooed ‘Alex’ and he turned to her and beamed. It was like a light had gone on in him. It was like all the videos on youtube you could watch and marvel at all in one. I was crying. My mum was crying. The audiologist was not, disappointingly, crying but did remark at how rare that reaction was. A colleague popped in and surveyed the feelings in the room and commented that we should’ve filmed it. It was amazing.

Delighted, elated and reassured, mum and I headed back to the car. I put Alex in his car seat and, for the first time, he filled it. He was sitting upright- he had unfurled. He was looking out of the window for the first time. I put on Dolly Parton and he looked confused but alert. (We would find out later that his is 100% committed to the 80s heavy  metal that his father had been playing to, literally, deaf ears).

When we got home, Alex picked up a toy of his. It started churning out the familiar tinkly song it’s always played and Alex looked at it like it was a miracle. Then he started to dance. He had never danced before and that boy was moving like a snake-hipped, leather-trousered salsa god. More crying ensued. Then I had to go to work where I proceeded to tell every one what miracle I had just witnessed.

a2 ha
‘And these things make noises, you say?’

 

Alex now:

Today Alex is still small, still snotty and still a nagging worry. But he’s also bloody trouble. He’s coming along and I couldn’t be prouder.

a1 haBrilliant blog posts on HonestMum.com