and although she was nice and I'm sure she knows what she is doing, it didn't go at all like we expected. We had to wait a while to be seen which is always somewhat stressful. Then we met her and she really didn't offer up much info at first and nothing in the way of literature. She did mention having something for us (an overview of the diet) but she is in the middle of changing offices and doesn't even have a key to her office. She just came across as unorganized when talking about the diet. Abe and I like to hear "this is what you do...here's what you can expect...". There was absolutely no structure today. We did however, get set up on the website I will be using to calculate Zane's meals. She calculated that Zane will be allowed 400 cals/meal three times a day plus a 100 cal snack per day for a total of 1300 cals per day. That may not sound awful bad but when you consider that 80% of his calories have to come from fat it doesn't leave much for the other things. Hopefully that plan will allow him to maintain ketosis (and ultimately control the seizures) and still do some growing while on the diet. The plan as of right now is to admit Zane to the hopsital on Monday the 20th to initiate the diet and he should be released following lunch on Thursday. We will get a phone call confirming that they have space available but everything else seems to be in order. So yes, we are moving ahead with the diet. I feel pretty confident that his meds are not working. Although today was bizarre. We did not see one seizure all day today yet yesterday he had 16 of them. Not sure how that happens. I'm curious to see what tomorrow brings. In the meantime we are mentally preparing for the diet. And I will be physically preparing for it in the coming days.
Home Sweet Home! by The Pioneer Woman
6 years ago
6 comments:
As always we will be thinking of y'all. Hopefully the dietician will get her stuff together for the next time you see her.
Hey sweetness. I hope everything goes well for your little Zane. Give me a call if you need a sitter for Brody and/or I can bring uou a meal or anything you might need. Hugs and Kisses.
Hopefully, the dietitian will get her act together once she gets her new office. But nevertheless, I am sure you are going to rock that diet for Mr. Zane!
My thoughts are with you and Zane - hope all goes well on the new diet journey.
Hi Beth & Abe,
This is from Terry in sunny CA. I love your blog! It is great to be able to keep up with your darling family. The boys are precious and so is Mackie! I can't get over how much the babies look alike at 4 mos. I love you guys a lot, even though I don't call often. You are all in our thoughts and prayers! (That's Aly and me.) I really appreciate all the information about Zane on the blog. I'm so glad he has you two for parents. Obviously you care so much and are doing everything possible to learn about his condition and help him get well.
Aly and I are hoping to come down with our boyfriends (such an outdated term, especially for people our age - do you know of another one we could use?) and of course, Aly's baby girl, in December. Probably it won't be right at Christmas, because we don't have enough seniority at work to get those days. We are really excited to be finally be able to combine visits to Mom with the rest of the family. Maybe we can even get Misty and her kids to meet us there, too. We would all have a big time! We'll be glad to get motel rooms. I'm sure no one has enough room for everyone. We want to see everyone when we get there, even if we need to go from Denton to Killeen to San Antonio. My dream is to see everyone together, but if we can't, it won't be settling to go from place to place!
Beth, I'd like to send the boys a small present each. Is there something you have been wanting them to have, or something they need? (probably about $25 each)
Well, time for me to get ready for work, so that's all for now!
Love,
Terry (and Aly):)
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