Daisy And Me People I meet when on my walks with Daisy

19Oct/140

Waxing Lyrical

Fred, along with everything else in his life, gets wax build-up in his ears. Once a year he has to get it removed and his annual service was due this week. On Tuesday morning I collected him from school at 11am and we drove over to the hospital. As is the practice now I didn’t tell him in advance, as that would be all he would think about, to the detriment of everything else. So for the short journey Fred kept asking why he had to go to the doctor, did he have an infection and would he have to get an injection? Even when we were sitting in the waiting room the questions continued; who what where when and why; the five ws of investigative journalism are well known to our Fred.

The ‘noises’ in his head had started a few days previously and were a sure sign that the trip was warranted. We were lying in bed one night when he shot up, looking around and looking scared.

“What is it?” I asked.

“The noises are back,” he answered,” I can hear Rugrats in my ears.”

Why Rugrats I don’t know but then Fred said he could hear the radio too. Off he went to his mother’s bed where he slept soundly, apparently the noises only play in our own bedroom.

The doctor, who tends not to say much and if anything is a bit wary of Fred, did his job and took enough from Fred’s left ear to start a cottage industry making nightlights. Fred oohed and aahed but when the procedure was over he was delighted. The revelation of being able to hear clearly again was obvious and he was delighted too that ‘the noises’ were gone.

Leaving the doctors there was a big smile on his face, he was looking around taking it all in, as if he’d been locked away in a darkened, sound-proofed room for a month.

“That’s better Dad, I can hear again,” he said.

Back at school he walked in, leaving me at the door and I nodded to Denise that all was good. When I collected him after school Ms O’Connor came out to ask if all was ok. I explained why we went off and she started to laugh. Apparently when Fred had settled himself again he looked up at her at the top of the classroom and exclaimed;

“I can hear you now Ms O’Connor!”

We had another trip to the doctors this week as well, this time for his six month check-up with Dr Shahwan at Temple Street.  At 7am we left the house, Fred a bit bewildered at being woken so early, again we hadn’t told him of the trip. With a minimum of fuss the car was packed with the essentials and not far outside of Tralee Fred curled up to his Mum for more sleeping. Thankfully he slept until beyond Kildare which meant he was fresh by the time we got to Temple Street.

On the way up Lisa and I discussed what we wanted to talk about. Our main concern was the decreased intervals between seizures and the gains we had made in seizure severity seemed to have faded too. This we were linking with the changes Suzanne had made to the VNS output at the clinic in August. The output frequency had gone from every five minutes to every three minutes.

The waiting room was packed with kids of all ages. A big change in Fred that I noticed was that on previous visits we’ve had to keep him seated and not to be making noise or disturbing other people. This time however he sat still, watching the other kids and being a grown-up boy. A small improvement but a sign that Fred is maturing. When our time came he went to get his weight taken and also sat still in Dr Shahwan’s room. There was a time he’d be pulling at everything but all went peacefully enough.

Dr Shahwan was interested in the improvements Fred had made; how well he was walking, talking and looking like a young man. This is a big part of Dr Shahwan’s approach, to make epilepsy almost secondary and get Fred a life where he develops fully, with epilepsy just being a condition. As he hadn’t seen our man in six months Amre was delighted with the patient standing in his room. When I said that it was two years since we first met Amre couldn’t believe it. At times we too lose sight of the improvements over the last couple of years.

Over this weekend I’ve tried to take a back seat and watch Fred. He is a different boy, walking tall, talking and not as argumentative as he was over the summer. Of course we don’t know how long all this will last or if it is indeed a permanent step. We too have being slowly trusting him to do things on his own and to tell us if all is ok.  The outcome of the meeting was to let the VNS as it is, see if the few bad intervals are just a blip and will Fred return to the longer gaps. Dr Shahwan was anxious for us to see the bright side, the long term improvements and not to get sidetracked by what may only be temporary setbacks. The glass half full approach.

After the meeting we had the traditional lunch in the Basement Cafe and before setting off for home. Lisa and Fred slept for a while and we were home by six, a long day but at least we were home. For a treat we had a Chinese takeaway at which Fred nearly fell off the couch with the excitement when I walked in with the white bag.

Later Fred was watching a DVD when he turned to Lisa and asked:

“Do you miss your Mummy?”

“Of course,” answered Lisa.

“Well she’ll always be with you, in your heart,” Fred said, holding his hand over his own heart.

Where he got that from I don’t know but that boy is always breaking our hearts

Of that we are sure.

 

 

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Posted by John Verling

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