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

10Mar/130

The Candidate

Sunday morning and its very quiet around the house. It is always the same when Ruby goes on a night away. Yesterday she went for a night at Hannah’s, back in Ballyferriter, which meant I had to drive “back the west” with my darling daughter. It was good timing as it gave me a chance to catch up with Kev Moriarty, home from England for the weekend. It’s always good to catch up with an old friend, especially as our news has improved somewhat since I last saw him in early December.

While I was off travelling, Lisa took Freddie off to the beach. While it’s not exactly beach weather Freddie wanted to go and collect seashells. The beach trip is all part of the new policy introduced by Temple Street this week. On Wednesday we had THE meeting, the one that was to give us Dr Shahwan’s opinion on the tests carried out in January and early February. Dr Shahwan’s complete analysis on everything done by his team; scans, pet scans, psychological assessments, everything…

This was a presentation of their plan for Fred’s future. Lisa was dreading it; I tried not to think about it. Lisa was having sleepless nights; I was trying so hard not to think about it that I finished by book in record time. Appropriately enough, the book I was reading was “The Road to Wellville.”  After all the years of struggle we were going to hear if Fred was indeed a candidate for surgery, was he eventually to get some sort of life back?

Ruby came with us. This was an important time for the family, the most important yet and Lisa thought that she should be there. As always, well nearly always, she was right. We are a tight group, rows aside, plus, we wanted to make something of the trip. The meeting was for a few hours on Wednesday afternoon so we booked a hotel for the night, to make an adventure of it all. The Verling family set off in the morning on the adventure, not knowing what was ahead of us but at least we were all together. We stopped off inLimerick, for what Freddie called a snack; those picnics in the car are part of any trip away from home.

At Temple Street, we were almost an hour early. Unusual for us. I dropped the family at the door and went off to park the car. When I got back, they were in the café in the basement, Freddie tucking into a ham sandwich.

“Look what I got Dad,” he said, holding the sandwich up for me to see.  At least it was an adventure for him.

I always make myself eat when nervous, there was a time when I couldn’t but now I force myself, takes my mind off things, I suppose. At about 2.10 we went up to the top floor, the meeting was at 2.30 and knowing Dr Shahwan, Amre, he wouldn’t be late.

In the waiting room it hit me. This was the big meeting of my life; nothing could match it for what was going to happen. Freddie was relaxed, Ruby was on her iPod and Lisa was together but very nervous.

Bang on 2.30, Cathy Madigan, the Neuropsychologist, came for us. Ruby and Freddie were staying in the waiting room but Cathy took Ruby to where the meeting room was, just to show her in case she had to come find us. Always thinking ahead…

There were five of us in Amre’s consulting room. Lisa, Cathy, Amre, Imogen the speech therapist and myself.

On his computer, Amre went through all of Freddie’s scans. He had samples from Cork of the telemetry, PET and MRI, which were all done last year and had alerted him, via Brian Mac, that there was something in Freddie’s left frontal lobe worth taking a look at. Then he went on to the work he’d done in January, his versions of the same scans. His work confirmed his belief; there is a malformation in Fred’s left frontal lobe. A piece which probably didn’t form correctly in the womb, and now had atrophied. It looked obvious once he’d shown us but then, he was only showing one good sample from the hours and hours of work he’d gone through. Thankfully, the man is a perfectionist in everything he does. His PET scan confirmed his telemetry work.

Dr Shahwan believes that Freddie is a candidate for surgery.

At long last we’d heard from someone who specialises in this field, a man who is a true wonder to us, that he believes our Fred is a candidate for surgery.

This of course, this is his opinion, a very well thought out and thought through opinion. His next job is to convince a surgical team that he is correct and that surgery would improve Freddie’s condition. As the team work in different hospitals, it will be sometime in May before he can get them all together. In the scheme of things and considering how long it took us to get where we are, till May isn’t a long time to wait.

Now Amre broke Fred’s case into three sections. The epilepsy and its surgery was one, Fred’s reintegration into normal life another and Fred’s education the final one. It makes sense and it shows the holistic approach the team are taking to get Freddie back to normal. He handed the meeting over to Cathy Madigan, to cover the next two stages.

Cathy has spent a lot of time one on one with Freddie recently, so she knows where he is at with his social skills. She believes that it is vital for Freddie to start back into normal life immediately. As Amre added, it will not be like flicking a switch after Freddie’s surgery; he will not suddenly be like a normal ten year once the surgery is done. In a further meeting, with us alone afterwards, Cathy laid it out what we need to do; we have to put our fear of epilepsy behind us and get Freddie back to school, get him back out into the world. Easier said than done of course but the back up we are getting from Temple Street is just amazing. Cathy has been in contact with our local school, they are ready for Fred to start after Easter, and she has had the Irish Epilepsy Association visit the school, to talk with teachers and pupils. She is fighting the Dept of Education to get a fulltime care assistant to be with Freddie at all times at school. There isn’t a stone left unturned from what I can gather. It is her firm belief that Fred needs social integration more than anything else; his education will follow afterwards. A half hour of school per day, then working up to more until he can do a full day, is the plan.

What the parents have to do is get used to thinking if he has a seizure we deal with it, not let it dominate our lives…this isn’t going to be easy.

Imogen too spent time with Fred lately. She is in total agreement with Cathy and is working closely with her as part of the team. Even though Freddie’s speech development has stalled at that of a six year old, oddly his vocabulary is very rich. The job now, and this is connected with his return to the outside world, is to get his speech to catch up with his vocabulary.

There is much work to be done. The trip to the beach yesterday was part of the new plan. It was a very brave Lisa who took the little man to the beach to collect his shells, but they did it and returned unscathed. When I got back from meeting with Kev, Freddie was busy painting them, a very happy little man.

After the meeting, the team were anxious to meet Ruby, put a face on the name. All part of their all round approach to the Freddie conundrum.

A relieved, happy, daunted family left Temple Street and headed for the hotel. The plan was to check-in, before heading over to Conor and Cathy’s for dinner. The family headed up to the room and I went off to park the car. It couldn’t have been more than ten minutes but when I got to the room Freddie was already in his jamas and in ‘our bed’ watching a DVD. It was a dirty evening and we were all tired.

The room was lovely, comfortable and warm…outside is was dark, misty and overcast.

I phoned Conor…we weren’t going anywhere… he said he’d be over about 8pm.

Lisa sent me out to get water and biscuits. Up the road, I found a Chinese takeaway and took a menu. In a convenience store, I got biscuits and big 2-litre bottle of sparkling water. Freddie loved the sparkling water; he called it 7-Up and kept the bottle next to the bed. That lead to an evening of burping and peeing.

The Chinese was ordered and delivered. The Verling family, for once feeling like things are going our way, tucked into spring rolls, noodles, sweet and sour prawns, rice and tofu in black bean vegetable sauce. Nothing quite like that stuffed with a take-way feeling when you’re in a hotel room, tired and its miserable weather outside.

About 8 O’clock Conor and Cathy came round. We explained our day, the first time we’d done so since the meeting. Hearing the words come out of our mouths was a real feeling that all this was happening. Pints were ordered, wine for Lisa and tea for Cathy Berry. Freddie had Conor to himself, showing him the Godzilla movies on YouTube. The laughing and joking in our little hotel room must have echoed around the world, it felt that great to us.

Back home on Thursday night, Freddie and I were sitting up in bed…

“Dad?” Fred asked, “Is the doctor going to fix me?”

“I hope so,” I answered, trying not to cry.

“In the giant magnet?” was the next question, referring to the PET scan.

Whatever happens I hope Freddie's view of the world doesn’t change that much.

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Posted by John Verling

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