Finally, after 5 weeks of waiting, we’ve left Crystal Fountain and taken over the house in Ballyard. For the non-Tralee people that’s Ballyard with the ‘ly’ in the centre silent and the second ‘a’ elongated, the posher you are, the longer the ‘a’. Last night, Saturday, was our first night and it felt like a piece of settled heaven now that we’re actually here. Even though it’s been less than 24 hours, as I write it feels like we’ve been here forever. The house is comfortable, warm, new and just about right. When I say taken over that’s exactly what I mean, Lisa has put her mark on the place making it our home, if you walked in yesterday and being none the wiser, you’d imagine we’d been here for months. Mind you, Ruby wasn’t far behind marking her spot, making the best bedroom in the house her own. Muttley is back too, 5 weeks in a kennels ain’t cheap and the kennel’s owner can now go for 5 weeks in theCaribbean. This morning Muttley and I went for a walk, a lovely one through the leafy lanes of Ballyard up to Blennerville and back along the canal. Felt even a bit more settled when out with the Muttler and Crystal Fountain is now but a distant memory.
This was my first week driving back and forth to Dingle without Ruby. Even though we don’t talk too much during the journey, I missed her a lot. No grumpy child sitting deep in her seat in the morning, listening to her music, no beautiful daughter coming in from school looking for snack money and then so tired that she sleeps part of the way home, still listening to her music but with some chat occasionally. The result of all this was too much time on my own and no hitchhikers to pick up! The tourist season is here so maybe that will change.
Outside of the move yesterday, it’s been a normal enough week for us. Freddie had a seizure Tuesday evening just after his dinner. Not a big one, just the now usual minute or so of full seizure which knocks him out completely. As Lisa and I moved him to the couch, he woke slightly but went back into a sleep as soon as he was comfortable. There was a smile on his face, feelings of elation are a common side-effect of frontal lobe epilepsy, but I like to think it was because Mummy and Daddy were fussing over him. We gave him the usual shot of Diazepam to hopefully prevent a cluster and he slept for an hour or so. He woke about 8pm and watched a DVD, had a snack of cheeses and crackers before settling down for the night about ten. This is all getting to be so routine now, every six days he’ll have a seizure, usually in the early evening, sleep, wake for a couple of hours and then sleep again. Apparently, this is a sign that the Tegretol is working, that he’s not clustering and we’re not rushing off to hospital with him seizing in the back of the car. Its all a major improvement in a way. Lisa is still weaning him off medicines, he’s down to three now and the Frisium should be gone in about 7 weeks, leaving the Keppra next to go. After that, the Tegretol will be on its own and Vimpat will be introduced to help. In between, we’ll have had the PET scan and the surgery route should be clearer.
Another feature of the current seizure cycle is that he’ll have a small one the next morning, almost bang-on 6.30am. This happened Wednesday morning at 6.32 and after he got up he had another about 7.30am. The two were tiny five second ones, looking like a major one was about to develop but didn’t and he carried on as normal. The same pattern Thursday morning, almost exactly to the minute. Epilepsy is a bizarre condition, no wonder so little is known about it, it seems to have a mind of its own, it could be a different cycle this week.
When we were moving last night, Lisa realised that we were out of Tegretol. Freddie had had his evening dose but there was none for today. As we saw recently, when he was sick, if he misses a dose of Tegretol it can have serious consequences for cluster control…Being in Tralee we’d no local pharmacy to call after hours, Walsh’s Pharmacy on Green Street Dingle have been wonderful to us down the years. So I called the hospital and eventually got through to the Cashel Ward. They understood completely, took my number and about twenty minutes later I got the call.
”We have what you need, just come to the ward” Nurse Katherine said.
“Thank you so much” I answered and Katherine laughed on hearing the relief in my voice. It really was a relief though.
The chinese I’d ordered could wait, I headed straight over. For once I wasn’t going to KGH with trepidation and up on the ward three welcoming faces were waiting for me. Nurse Marie, who’s been through so much with us, was there and admitted her heart had sunk when she heard I was on the phone but rose again when she heard why. We chatted for a while before a full box of meds was produced and I headed off home. As always I left the ward with tears in my eyes, they are so understanding and caring for my little Fred I just can’t help it.
Down in the lobby I met Dr Leahy, Fred’s paediatrician who recently retired, but doesn’t seem to have actually hung up his stethoscope... Old school to the bone, dedicated to his job of 30 years, he was in checking mail and reading cases of children he was still concerned about. He looked worried to see me but happy to hear why I was in at 9pm on a Saturday night. We chatted for a while, I gave him an update on Freddie and he gave me some relevant advice on surgery etc. As I left he told me in no uncertain terms that Lisa was to ring him anytime for a chat or if we needed him to call someone on Freddie’s behalf, anything he could do, he would. Again tears in my eyes going out the front door.
After picking up the chinese takeaway, I headed home. We settled into our first night in Ballyard full of MSG and just feeling happy to be living somewhere we can call home again. Fred was stuffed with fried rice and white crisps.
White crisps, that’s what he calls prawn crackers and a far better name it is too if you ask me.