Re:Macie/Sandi/keto weekend

[Guest guest]

Hi Sandi,

Great to hear from you, and I'm glad things have settled for

Zara. Just reading about all the goings on in your life right now

makes me tired! You must be super mom (not must be, I KNOW you are!)

Hope things continue to go well for Zara. I've tried several times

to get my snow pictures to attach to send her, but I'm technically

challenged. Our digital camera is very old, and I think the file

sizes are too big. I'll keep trying, though. Maybe I can save it in

some other format.

THANKS so much for your kind words and the encouragement. I knew

I could count on you to understand and be supportive. Of course I'll

hang around the group if it is OK with everyone. We are doing a very

slow wean while we come up on Lamictal so slowly, and if things get a

lot worse we'll just stay with the diet and go from there. This

really had been the hardest decision we've ever made....I know all of

us make tough decisions on a regular basis, though.

Seems like there's been a lot of chatter about the keto weekend

this time....I guess the timing was off last time, huh? Wouldn't it

be great if we could get the Epilepsy Foundation to help out? I'm

glad to help plan. I think it would be WONDERFUL for all of us. I

told Kathy that I vote for a beachside weekend so us grownups can

relax a bit and the kids can have free entertainment. Maybe we could

poll everyone about a location and get some ideas what everyone else

would like to do....and kind of see where the majority of us live

(Northeast, south, west coast, etc.) If we are off the diet by then

and I won't have keto meals to prepare, I'll cook a meal for all the

grownups!

Take care,

Glenna

-- In ketogenic , SJVC5@a... wrote:

> My prayers are with you, your family and Macie

> I am not " groaning " with the introduction of a med

> You tried and tried and fine-tuned,etc...

> Meds, Diets, NONE are permanent--

> Go with your Gut and with the support of your family and medical

team---you

> will find those seizure-free days again--

> Will you still stay with the Keto site so we can keep track of

Macie's

> Progress??

>

> Zara is fine

> Had some rough days but seem to be back on track

> Our life is a whirl-wind right now

> My youngest son is preparing for First Holy Communion and

Confirmation

> This takes up 2-3 days a wk, plus the two boys are in sports (older

son,

> Hockey and youngest son baseball)

> Zara does NOT tolerate going to any games--or practices

> So, as usual, rearranging work schedules to make all this work

> My second daughter is graduating from High school this year, so we

are busy

> making college preparations

> And my oldest daughter is going to be a senior at the University--

> BUT life goes on....

> Thinking of you during this weaning phase for Macie

> Thank-you for asking about Zara

> Sandi

>

>

>