Has to be one of the longest sentences I have ever heard Abigail say. Then the old Abigail came shining thru with a high pitched scream, when I did not respond quick enough due to the utter and complete shock I was trying to blink thru. When she was done with my watch, she handed it back to me and said "All done watch, daddy take".
Neither Melinda nor I have seen anything even remotely close to a seizure in over two days. We are still holding our breath and will continue to do so for a few more weeks as we have seen this before with some of the other drugs she has taken before. The main difference now is the rate at which she is catching up. Her age appropriate play and level of alertness is amazing. I feel that if she can be seizure free for at least a month then we may very well be onto something!
Food continues to be a challenge and more often than not we have to resort to shakes to get the calories in her. We had success tonight with her new favorite, that being the ketocal pancake!
Melinda emailed Abagail's dietitian to find out if we can lower the calories again because Abigail has actually gained 1.5+ pounds since leaving the hospital two weeks ago, one of the side effects of this diet is you loose weight, not gain it. We both feel if she were hungrier we would not have the issues with food we do now. She is sleeping moderately better which is a blessing as Melinda and I are slowly but surely catching up on sleep.
Abigail is all about blocks of any kind and has two sizes of Lego's and a hoard of bristle blocks that she plays with constantly. When we leave the house now she has to have three or four to entertain herself while driving around.
The roller coaster is slowing down but I have a feeling the designers have at a couple more loop de loops for us before we get of this crazy ride :)
2 comments:
That's AMAZING Mike! What a blessing to have seen several seizure-free days. I'm so excited for all of you. :)
Did Abigail lose any weight during her initiation? Jade went from 12.4 kg down to about 11.5 kg before she started to creep back up again. I don't believe the kids are supposed to lose weight, though; my understanding is that they should maintain their weight, UNLESS they are growing.
What were some of Abigail's favourite foods before the diet? Maybe I can help you find a similar keto version. Also, your dietician might be able to provide more recipes. Have you checked out all the "standard" recipes in the ketocalculator?
Thanks! We are hoping this sticks!
You are right about the weight...I misunderstood one of the side effects. Melinda corrected me last night :) She did loose almost half a kilo that first week.
Its funny you ask about recipes? Melinda bought the shirataki noodles last night and asked me to ask you if you had any good beef sauce recipes?
We are trying everything and I think it comes down to her just not wanting to eat sometimes. We also adjusted her from eating four meals a day to three meals with the fourth split to two snacks at 9:30 and 2:30 or 3:30 so she can have snacks at school with her friends.
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