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

28Dec/140

Another Year Over

Today is the day we begin to engage with the world again. It’s been a very lazy, quiet, wonderful Christmas and this gap period until New Years Eve is just perfect for doing nothing. I’ve watched The Great Escape and It’s A Wonderful Life while Fred has watched every episode of SpongeBob on Netflix, at least once. Lisa has cried her eyes out At Saving Private Ryan, though the Vanity Fair I bought her yesterday with the Bradley Cooper feature cheered her up. Now Fred is downstairs watching some other old favourites while Lisa and Ruby are off at the gym, burning off that Christmas food which has been on a continuous roll since the 24th.

Thankfully we all slept in until about 8.45am Christmas morning. Fred got a load of presents but this year Santa went easy on the Godzilla toys, as we feel he has to move on a bit to more age appropriate and practical stuff. So the little man got puzzles, DVDs, clothes, a scope for watching wildlife, games and heavy fleece pjs. For a while he was disappointed and went looking under the tree to see where the Godzillas were but he quickly got over it and went back to his collection in the corner. Those pjs were put on and only came off this morning, three days later. Fred wore them everywhere along with some heavy duty socks. In bed, under the blanket watching TV on the couch which he hardly left, at the kitchen table, not once were they taken off, day or night. He did have a shower Stephen’s Day but the pjs went back on. This morning when he came down for breakfast the smell preceded him and into the wash they went, to be ready in time for the big visit tomorrow.

The smile is still on Fred’s face from when Lisa told him this morning that Aunties Claire and Rudi were coming tomorrow. Already he’s planned the visit to the Grand for lunch and the movies they will watch together. Last Sunday his cousin Paulie came on a surprise visit and Fred nearly passed out with excitement, jumping into his lap as soon as Paul drove up to the house. Paul, who had been at a party in Killarney the night before was a bit worse for wear but he indulged the Fred. Again it was a perfect excuse for a visit to The Grand which was lovely on that Sunday afternoon, with pre-Christmas shoppers coming and going. Fred had the Galvin special which was as good as ever with chowder up to the lip of the bowl.

On Monday Lisa went to get Fred’s medicines from the chemist so we’d have a supply for the holidays. For some reason the 200mg tablets of Tegretol which he usually gets, were out of stock and so we had to use the 400mg. He takes three and a half tablets per dose and now that was changing to the bigger pills it worried us. Epilepsy control is very tight; any change in meds can have terrible effects for some reason which is why we can’t change to non-generic cheaper versions. The worst bit is that the 200mg are out of stock until February so we’re trying to ration the existing 200mg ones until the pharmacy can find an alternative source.

On Christmas Eve Fred got very bad confusion just as he went to bed and shook himself to sleep, having a tiny frontal lobe about 1am. On Christmas morning he was fine and got on with the day but he did seem a bit off at times. About 6pm he got the bad confusion again and cuddled up with his mother for a snooze. A seizure broke through about 6.45pm throwing our day upside down. If this was due to the medicine changes we could have been in for a bad night, the last thing we wanted on Christmas Day. Fred slept for another couple of hours but woke feeling fine, a bit hazy but fine. For the rest of the evening he watched DVDs and played with his presents with us constantly watching him.

That was that though. Lisa went back to the 200mg tablets the next morning and we don’t know what we are going to do about a supply when they run out. Tomorrow we’ll be on the phone seeing what can be done, looking for a source somewhere. Also in our heads we’re thinking maybe it was just a coincidence, just one of those unexplained breakthrough seizures that epilepsy likes to throw at us from time to time. Who knows?

What I do know for certain is that Fred will continue on and we’ll bring in the New Year on Wednesday night. Now that 2014 is nearly over we’ll look back and remember all the people who’ve made the year easier for us. My family and Lisa’s who come and visit and make Fred so happy. Blennerville school, without who Fred would have a very contained life. The freedom that their care gives us is beyond describing and the fact Fred loves going to school says it all. Conor and Cathy who, though we haven’t had to lean on their hospitality as much, we know are always there for us; Conor’s visit was a highlight of the year for Fred. Ed and Pamela Galvin who look after us from Maine and Kilmurray; Ed taking me to lunch introduced The Grand to the family and Fred hasn’t looked back since. The staff of Temple Street and Kerry General Hospital who care for Fred and his parents so well. Brian who is always at the end of the phone for me, giving me advice and distracting me with cricket scores.  All our friends who we know are there if we need them, who always ask, who always care and who we know would be here in the drop of a hat.

To all of you thank you and have a Happy New Year.

 

 

 

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Posted by John Verling

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