Thursday, February 21, 2008

Gearing Up

We got a call this afternoon from the neurology nurse regarding the ketogenic diet that Annie will begin next Tuesday. If all goes well, she will experience a decrease in seizure activity, maybe as soon as the first week on the diet. My goal is that her three seizure medicines will be eliminated, which could take weeks or months to wean off. That would be best case scenario. Most kids who are on this diet, stay on it for at least 2 years, and then gradually move back to eating regular food. The good thing for us is that they have a Ketogenic formula I can use in her g-tube. She'll be in-patient at Children's until at least Friday, as they monitor her electrolytes, and her general adjustment to this high-fat, low-carb diet.

I talked to the dietician about Annie's preference for salty, crunchy food, and she said that bacon and pork rinds are on the diet. Mmm, mmm, good. Annie did eat cooked carrots for the first time the other night, so maybe I'll be able to move her toward more healthy food choices. But the fat in the diet is what shuts off the seizures, so there's plenty of fat on her list of allowed foods. Can you say "ma-yo-naise??"

We would sure appreciate your prayers for a smooth transition to this new diet, and that her electrolytes remain STABLE. Obviously, because Annie's metabolic system is whacked out by the Addison's disease, she will be watched like a hawk by her doctors. And Mother.

The whole thing is a risk, but because she is on three seizure medicines, and is still having at least 6-10 drop seizures a day (I haven't said anything about it, because I keep thinking they'll go away), I believe it's a worthwhile thing to do. Again--we would appreciate your prayers for her, for the kids at home, for the doctors, and for us.

Jean

Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Ephesians 3:20-21

12 comments:

Lynn C said...

Praying for Annie is all I do :) Until I hear or read that she is talking I will continually pray.

uncle jeff said...

pray, pray, pray...

God, thanks for Your love and thanks for all that You do that we don't even know of.

amen...

Gretchen said...

Lord, thank You for this family. We leave the details to You. Healing. Hedge of protection. Peace. Grace. Mercy. We love you so. In Jesus' name I thank you and pray. AMen.

xxxooogretchen

Annie Sullivan said...

Thanks, Lynn, for your prayers. Your prayers give me renewed hope that she will talk soon!

Thanks, Jeff, for your compassion and love.

And, thanks, Gretchen, for your optimism, enthusiasm, and huge faith in Jesus.

:)Jean

Anonymous said...

Hey, what about ME? :) Seriously, I am praying and came on to tell you about this great new snack item I found and here is all this talk about making sure Annie is on a healthful diet.

Hmmmm... anyway don't ask me what I am doing eating these myself! ULP

High fat - check
Tasty - check
Crunchy - check
Salty - check
Healthful - bleeeeeeeep :)

Fritos Flavor Twists, Honey Barbecue, are delicious! And I don't even like Fritos! But these are sooooo yummy and might be something she would like.

Sue Powell

Anyway,

Annie Sullivan said...

Yeah, Sue, "heathy eating" is something we've just read about in books, not something we've actually experienced first-hand.

:)Jean

Anonymous said...

Hey, well, I say if Annie will EAT it, feed it to her. :) In moderation, of course. But then of course I speak from the "non-Mommie" viewpoint. :)

Sue Powell

Anonymous said...

Jean,

Continued prayers that God will simply decide enough is enough and heal her outright. Praying that even He, the Tireless One, will tire of the repeated pounding at His door for Annie's healing and just say "Okay...It is done; she is healed."

Praying that in the meantime He will bless you, Bill and the kids (oh, and Millie) with His comfort, His peace, His sense of humor (which you show repeatedly in your blogs)...that He will let her speak, that she will shout out in joy for the love in her heart, that she will yell at the top of her lungs "Mommy! Daddy! Taylor! Peter! Andy! David! Jack! Olivia! C'mere!!"

Praying all of these things...and that God, or you, will let us know if/when there is anything we can do to help in all of this.

As we continue praying --

Love,
T

Gretchen said...

Um...Pictures? I thought you said that Bill's NY resolution was to get more pictures on this blawg.

I know he's got nothing else to do. :)

Praying for our sweet angel girl and her awesome fam.
xxxooogretchen

Annie Sullivan said...

Thanks again for all your prayers, you guys. Next post will be an update on the first day's happenings.

Jean

Anonymous said...

Just to let you know I am praying for Annie and all of you today as she begins this new diet! GO ANNIE ===cheering wildly, clapping hands, jumping up and down=== Hmmmm... well okay it is 5 AM and I just grudgingly crawled out of bed; forget the jumping up and down part but you get the picture. :)

Sue Powell

Anonymous said...

Praying that all the rest of the family will feel peace, supported, comforted by an Invisible Presence in the Holy Spirit in your spirits as Annie (and Mom and Dad) are once again away from home.

Hope she can dip Trader Joes Veggie Stix in something high-fat and still enjoy them!

love,
Beth
(RWW, Beth)