Saturday, April 18, 2009

Update on Miss Emily

Lots of good things going on for our sweet little girl who has been receiving many well wishes and prayers from all who know her. Emily's last real seizure was 68 days ago! This ketogenic diet has been a real blessing for her, and although her EEG still isn't normal, all of us are noticing positive changes in Emily. She seems to be recognizing sounds and looks toward the source of those sounds(when she's in the mood!), has been "dancing" in her crib and chair, and has vastly improved head and neck control.

Shown to the left is Emily's "meal" for one day. Pictured is her syringe of micro lipid(FAT-uggg) , and a teeny bit of Gerber carrots and beef. Aimee mixes the meat and vegetable into ice cube trays and freezes it because 1 jar of each is enough servings for 8 days, but baby food is only good for one day after opening the jars. It's way more convenient to measure it all at once and it also saves us about $6 a week!

I am hungry!

Emily also eats during the day with very precisely measured formula which consists of soy based carbohydrate free formula, apple juice, micro lipid, and water. I measure this in one pitcher each evening and then Emily receives it through her pump and tube at regular intervals during the day and through the night.
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Our latest challenge has been Emily's bout with the stomach bug, which caused her to not be able to handle the formula, which in turn gave her dangerously low blood sugar. Since she is hypoglycemic, her keto diet was formulated with additional apple juice to help maintain safe blood glucose levels. If it is too low, Aimee treats it with syringes of 8 mL apple juice until it is a safe level. Aimee tests her blood sugar multiple times daily.
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The biggest news lately was success after numerous meetings and forms to be completed to get a Medicaid waiver through the community resources for people with disabilities program for Emily to have an opportunity for some nursing care. Two weeks ago we met our first nurse and we have had several visitations as they arrange a more permanent schedule. Meanwhile, Aimee has been adjusting to having another adult in our house who cares for Emily's medical needs during the day while I am at work. Luckily, the nurses are fantastic and are making this transition as comfortable as possible.
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Additionally, the Department of Developmental Disabilities granted our request for funding to cover some adaptive equipment for Emily. Our first purchase was a swing that is made specifically for children with disabilities. The fresh air and the calming effect of swinging on the swing set should both be therapeutic for Emily, and knowing she can participate in that simple pleasure with her brothers and sister will be good for her Mom and Dad as well.



This picture speaks for itself!

Go, Emily!

13 comments:

Hope said...

WTG Emily!!
Does she still have problems with her laryngomalacia?

Anonymous said...

Emily it was so good seeing you do all this in person during our Easter visit.

We love you and each little improvement you make!
Love, MeMe and PePe

Gee-off said...

Hope,
She still has the narrow airway as far as we know, and sometimes chokes a bit on her food, but is still doing well overall with swallowing easily. She hasn't had a problem with noisy breathing for about a year now! :)

Sandy said...

She has come so far! I am so happy to hear of her wonderful progress!

Rachel said...

Wow, she looks great! I'm so glad things seem to be going well!!

jenyphrc said...

WOW.. look at you, Em! Great job!! scs

Julia said...

wow!! she's doing awesome!!

Andrea said...

That is AWESOME! And that last picture made me cry tears of joy. What a sweet AMAZING blessing she is! She is fearfully and wonderfully made! :)

Sharon said...

I found your blog several months ago and have been following your journey. This post brings SO MUCH good news!!!! That she has been seizure-free for so long, that you are getting nursing assistance and that Emily can go out and enjoy swinging with her siblings. And look at her holding her head up so high!! What wonderful, wonderful news. May good things continue for you and your beautiful family!

Vicky Jo said...

What a beautiful & strong little angel she is!!! You are all so blessed to have eachother! So happy to hear some good news!!!

Anonymous said...

She has come so far! I am so glad to hear about her wonderful progress!

- Tracey, BBC friend

Julie said...

Wonderful update! Love the new pictures of Emily, how much she has changed.

Nicole said...

Go Emmy, go Emmy, go, go, go Emmy!