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

29Oct/120

Return Of The Man

The week just gone has seen improvements, well improvements of sort. Sitting here beside Freddie on a bank holiday Monday afternoon, life couldn’t be better, he’s happy watching a DVD, Ruby is on the other couch watching The Vampire Diaries. Lisa is off for a run, poor Muttley the dog was wondering when he was going to see life outside of the backyard again. Lisa needed the break from us all but still we had to push her out the door.

Fred is such a wriggler, he never seems to get comfortable, always trying to find that perfect spot to relax. Just now, he decided to get some of his toys, to do some battles while watching the DVD. Instead of getting up, he had to lean over the side of the couch, still under a blanket, still squashed up to me. He pulled his hands up, two toys got, but with his fingers covered in black ink. He had been drawing faces on balloons earlier and now the ink was all over his hands, as his mother had put them in with his toys. Off to the bathroom to wash off the ink and now ten minutes after I sat down with him, he has finally settled. Let’s see how long it takes him to move again.

The improvements this week have been a carry over from last week. With the withdrawal of the Vimpat medication, his all round awareness has improved dramatically. His speech has improved, no more slurring of words or too much searching for the right word in mid-sentence. Walking and spatial awareness has also gotten much better. The constant twitching is dropping off but still not gone altogether. That the twitching will probably always be there in some form or other we’ve accepted reluctantly, but at least now its just a little bit of involuntary jerking. All these improvements make us feel as if we’ve got our little boy back again and also doesn’t encourage us to start him on any new meds, as his neurologist plans. As its unlikely that Tegretol on its own will prevent seizures, inevitably we’ll have to add something to the mix at some stage.

For now we’re enjoying the return of the man. His artwork output is prodigious to say the least. He hasn’t produced anything for weeks but this week he’s made up for it, in spades. All day he’s at it, making snowflakes for Christmas, drawings of Blennerville Windmill.Then on Friday he really outdid himself. Ruby was going to a disco, in Cloghane, and was bringing four friends over after school to get ready for the night out. Lisa went off to collect the crew from Dingle while Freddie and I stayed behind inTralee, to wait the girl’s arrival. Freddie got his drawing markers and his art pad.

“What are you doing?” I asked.

“Oh, something for the girls…” he answered.

Drawing number one was done, torn out and put aside in a safe place.

“That’s for Hannah,” he said.

Then number two...

”For Tara,” I was told.

“Dad…what are the girls names again?” he asked, after doing a third one for Ruby.

“Hannah, Tara, Bobbie and Eilish” I told him.

Two more were done, for Bobbie and Eilish. The one for Eilish only finished as the girls came in the door.

Freddie jumped up in excitement when they arrived, the drawings behind his back. He lined the girls up and presented each with their special piece of artwork. Each girl’s heart was broken by the gesture and Freddie got lots of hugs and kisses. He was appropriately bashful in the face of all the affection but I could see how pleased he was that the artwork had gone down as well as it did…

Fred’s speech has improved dramatically too. He no longer slurs his words and he’s finding the right words to describe his thoughts. Its as if his thought process and word formation are again in sync. While sentence structure is still difficult, he is putting words together more than he has done for a while and with practice, much practice, he should master the art. He’s still giving great descriptions for everyday things… Yesterday evening he had potato cakes for dinner. I asked him what he was eating…

“Oh, potato, rasher and onion pie” his little voice said looking up from the plate for a second. Freddie has such a lovely speaking voice and he mixes wonderful facial expressions with his words so you just can’t stop looking at him as he talks. His beseeching raising of the eyebrows when he’s looking for something always manages to get around his mother, even when she’s told him no…

It hasn’t been all plain sailing this week. On Wednesday, I was making breakfast when I heard an almighty thump from upstairs. Freddie had collapsed in a seizure in the bathroom, banging his head in the process. It’s a thing we always fear but we try to give him as much a normal life as possible. First thing in the morning is proving to be a trigger time for the man these days. As a result we try to wake him slowly, leaving him sleep too long can be a trigger also. So, about 7.am we wake him to give his morning medicines and a glass of water. Then we let him doze till about 8am, at least if something happens he’s in the safety of his bed. Not so Wednesday morning, but then Freddie is Freddie.

Ruby and I headed off to Dingle about 8am, leaving Freddie and Lisa cuddled up in the bed. Lisa had given diazepam to settle him, so Freddie was due a morning of sleeping and recovery. Even by the time I was leaving, the bump was a fair size and now five days later it is a nice shade of yellow. Poor little man never gets a break, why hadn’t it held off for another thirty seconds when he would have been safely back in bed?

Ruby and I returned about six that evening to a very dozy little man lying in his mother arms. Not content with knocking him sideways in the morning the epilepsy had come back for a second go about 5pm. Not as bad as the morning one but still a second seizure in the one day. Lisa was looking after him, as only she can and he drifted off back to sleep not long after we came home. He slept till about 8.30pm when he woke, looking for dinner.

Saturday evening he had two small frontal lobe seizures, just after he got the markers and pad ready for some artwork. Again, they took it out of him and he slept it off, waking about 8pm for another late dinner.

No matter what this epilepsy throws at him, he always bounces back.

Freddie is incredible, really.

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Posted by John Verling

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