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

31Aug/140

First Week Back

Well Fred and Ruby are downstairs lying out on the couch. Fred is watching the new Godzilla movie and Ruby is reading while also on her phone. We were all up comparatively early this morning, a product of getting back to school this week. The two were back on Thursday, Fred to the familiar Blennerville and Ruby to the new surroundings of Gael Cholaiste Chiarrai.

Before all the school going though we had a journey to Dublin. On Monday evening Lisa got a call from Temple Street. As they were all getting back to normal we had a choice. Either go to Dublin the next morning or wait until the six month check-up in October. Lisa and I were anxious to have the VNS checked as Fred’s pattern has been a bit erratic lately. Suzanne, the VNS nurse, was fully booked for the next morning but if we turned up she would make time to see us. Fred’s check-ups only take a few minutes so we decided to take Suzanne up on her offer.

At 7am Tuesday morning we were up and on the road by 7.30am. Fred was a bit shell shocked; this summer has been the first where we’ve felt comfortable with him having a lie-in. So much has changed in the last while but there was a time when we stuck to the strictest of morning routines. Partly out of fear that too much sleep might trigger a cluster and also we couldn’t relax leaving him in bed alone. These holidays though he has been sleeping until gone 9.00am, coming down sleepy headed for a late breakfast before starting his day.

In the back of the car he snuggled up to his mother, pulled a blanket over himself and drifted back to sleep. Every now and again he’d wake to ask where we were or where was next but he slept most of the way. By the time we reached Rathcoole he was well rested and sat up for the rest of the journey. It felt strange not to be calling to Cathy and Conor but this was a mission; get the job done and get home was the goal.

At Temple Street it was packed. The waiting room was full of screaming kids and stressed parents. Luckily as soon as Suzanne knew that we were there she made time for us. Still thirty minutes of bedlam was enough for anyone. The staff at Temple Street has always been so welcoming and it was so very reassuring to see Suzanne’s smile one more. Once in her office she took Fred off to be weighed before we got down to a catch up.

We tried to give as accurate a rundown of the last few months as possible and Suzanne took many notes. Her answer to Fred’s recent pattern was instead of upping the output to increase the frequency of the VNS coming on. In essence this is what Lisa and I have been doing by swiping him with the magnet at regular intervals. Now she changed the timings from every five minutes to every three minutes, a proper method of what we had been doing, 24 hours a d day, seven days a week.

The idea behind this is to tackle that cycle of seventeen to twenty-one days which has been Fred’s normality for the past few months. Maybe the more regular output will help stabilise his brain, which has always been the plan. Instead of upping the output which may have side effects and run the battery down quicker than scheduled, an increased frequency may do the job. Only time will tell. Now that we are getting some sort of control over the seizures and clusters maybe we can push the frequency a bit too.

Here’s hoping....

Once the session was finished we headed down to the Basement Cafe for lunch, a favourite with Fred. We were back on the road by 1pm and home by 4.30pm. The day had passed in such a haze of activity that we just collapsed into the front room after dinner and all were in bed by 10pm.

Wednesday was a day of getting ready for the dreaded back to school. We had left it so late with Ruby that she only had a meeting with her new school principal that morning. Both parties suitable impressed and he left us with a “See you tomorrow.” Nothing like leaving things to the last minute. Lisa took Ruby out uniform shopping while Fred and I took it easy. It’s been a good summer; Fred has had a few setbacks but nothing we couldn’t fix. Now at the end he didn’t want to go back to school, a good healthy attitude and a sign that all is ok.

Thursday and Friday were all about getting up and out the door by 8.45. Now that Ruby is at school in Tralee there aren’t any more early rises and aiming to be in the car by 8.05am. It wasn’t really the early mornings more the driving, nearly 500km a week and ten hours on the road that we dreaded. That was all before weekend trips or maybe having to out in the evenings if she had training or a match after school. We did it though, three years of those daily trips and that is all behind us now.

As I drove Fred over to school Thursday morning he let it slip that he was excited about going back to school. At Blennerville he walked in, head up and smiling, as if he’d never been away. The kids all welcomed him back and Fred sat in next to Jaden ready for the day. No more half days or three-quarter days; it’s full on until 2.30pm from now for our boy and he’ll be all the better for it too. It’s important for Fred to be among his peers, learn from example of what is expected of him and in the process get his life back. On Friday morning Lisa went back to the car to get his jacket but Fred continued on, walked in on his own, just as any boy his age would do.

Oh the normality of it all.

Yesterday Jaden came over. Fred had asked him after school and of course the J man said yes. Lately his visits weren’t great, Jaden being very quiet in himself, happy but only wanting to play on his tablet. The visit yesterday was very successful; the two played outside, watched a few movies and did their own thing when tired of each other.  Jaden stayed for dinner and afterwards they played outside again. Lisa went to round them up at going home time and found a drenched Freddie walking home. The two had been playing at the broken pipe on the green and Jaden had turned it on Fred. Good old fashioned messing and great to see.

Lisa took Jaden home while Freddie and I went to change.

“I nearly drowned,” Fred said, getting out of his wet clothes.

Nothing wrong with that boy’s imagination.

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Posted by John Verling

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