Well, hi there! Yes, I made it to Calgary and attended a really well-run and highly relevant course. I visited with some friends, ate unhealthy amounts of food, did some shopping just for me, got my hair cut, painted my toenails, and found I could be just as sleepless in a child-free zone as at home. The kids survived and Michael survived. Overall, it was great. I’m looking forward to doing it all again in December. Only this time, it will be to Vancouver, and also my mom will be in Whitehorse, so Michael won’t even notice I’m gone. Except at night. (Ack. Moving on.)
Speaking of Vancouver, the girls and I just got back from there. Yes, just me and the girls. I think I was quite brave to volunteer for this trip solo. With both girls. BOTH girls. And guess what? It was a good trip.
It was time for Jade’s follow-up visit with her awesome keto team. We flew down on Wednesday, saw the keto team on Thursday, and flew back this morning. A whirlwind tour, indeed. But aside from the hospital visit, we were able to visit with Uncle Mike and Auntie Nem (who is 6 months along in incubating a small alien being — and I got kicked!!), plus we squeezed in a visit to a Michael’s craft store, which did considerable damage to my credit card.
I am happy to say that the stress of pre-making all of Jade’s keto meals and the strain of remembering to pack every little thing for all three of us into one suitcase outweighed any of the stress I had while on the trip. The girls got compliments on their good behaviour on both flights, they played well together in the play room at Easter Seals House when I had to cook or wash dishes, and they were good as gold (or thereabouts) when I put them to bed in unfamiliar surroundings.
The visit with Dr. Huh was great, too. The doctor was really pleased with how Jade looked and the progress she’s made. She commented on how well-nourished Jade appeared (not always the case with keto kids) and everyone is impressed that her cholesterol is so low. (We attribute that to the lack of animal fats. Because we are dairy-free, keto staples like butter and cream are not allowed.) We finally (seem to have) kicked the nighttime tonic seizures back in May, and Jade’s learning and development have been picking up the pace ever since.
Jade’s therapists at the Child Development Centre conducted a veritable battery of assessments in preparation for this visit. I got their report on Monday and sent it to Dr. Huh before we flew down. Dr. Huh was so pleased with the report, she said she was carrying it around in her bag at the conference she was attending that day, showing it to her colleagues. Jade could be the poster child keto success story.
The lowdown: Jade’s motor skills need some work. She doesn’t have a very good sense of balance, which affects a lot of activities that require her to balance on one foot (such as kicking or hopping). We also have some questions about her depth perception. But her language skills, which once lagged more than a year behind, have now advanced amazingly, to the point where she is well above average. (We still have some problems with her ability to express her ideas, but that’s a discussion for another time.) The part Dr. Huh was most excited about was the cognitive testing. Jade’s cognitive scores were all normal (and even a smidge above average, I can’t resist adding), which was the area the doctor felt was most likely to be negatively impacted by Jade’s seizures. She said that these results tell her we did a good job of gaining control of the seizures as quickly as possible.
As for the ketogenic diet, the doctor feels that Jade is still likely to have the tendency to have seizures, so she would like Jade to stay on the diet for at least another year. (With kids who are also on medication, she apparently likes to keep them on the diet until they are between 6 and 8 years old!) Since Jade is med-free, we’ll reassess her next year. Then it will take at least a year to wean her from the diet. I’m not excited about transitioning her into school while on the diet, but as I’ve said before, I will do this diet with her until she’s 18 if I have to. Now we know we’re looking at a further minimum two-year commitment. And I’m okay with that.
Our appointment on Thursday happened to fall on the two-year anniversary of Jade’s induction to the diet. Michael wrote a great post about that here. I still hate that picture he posted, although I’m now glad that he took it so that we can look back and realize just how far we’ve come.
Still, here’s a little something happier, not to mention a lot more up-to-date, taken on Thursday, as we were leaving the hospital.