I love blogging. I love Facebook. I love that people I have never met truly care about my Emily. I love that we can all talk and offer advice, suggestion, and love to one another. It's amazing! :)
I wanted to answer a few things asked in comments lately.
The ketogenic diet has been suggested to me many times now, and I wish we could try it. The neurologist last week even said it would be his number one suggestion for Emily. Unfortunately, she has an SCAD Deficiency. This is a metabolic disorder that limits the amount of fat she can have in her food. Her diet is a very high protein and very low fat diet. She can't have more than 5% fat daily or her metabolic disorder kicks in and things go wonky. This unfortunately is the complete opposite of the ketogenic diet, so we are unable to try it.
I get asked a lot about Emily's blenderized diet as well. She gets a small amount of formula overnight on a slow drip, which she has to have because of the SCAD Deficiency mentioned above. She cannot go more than 3 hours without nutrition or her blood sugar plummets. During the day though she gets a blenderized diet through her g-tube. Again it is a specific recipe because of her SCAD, and I have to carefully measure everything that she gets. She gets fruit, veggies, and meat every day though. I love making her food, it feels so normal! :)
Now that we know what is and isn't a seizure, it is glaringly obvious how much Emily is really seizing. It's very disheartening. No wonder she is at a standstill developmentally - her brain is constantly recovering from seizures! They are short and fast seizures but nonetheless they are abnormal.
That's the update for now. Not much else is happening. Jacob's school has a Jog-A-Thon this Wednesday, and as PTO President it is my deal. My poor (plantar fascitis affected) feet will be sore for sure! I go to the podiatrist tomorrow, so we'll see what suggestions he has.
Do you have any other questions? I know there are some people who are new to our blog and may not be "caught up" on Emily. Is there anything you have always wondered? Go ahead and ask! :)
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
6 comments:
Thanks so much for your encouraging note on my blog! I am honored, you're practically famous in the broken kids club! ;)
Really though, I love hearing kind words, especially when the going gets tough. (And it's been quite the weeks...) We are getting much better at the cathing, I am practically a whiz and it's only been a week! Her dad's even been brave in the last couple of days, he gets so nervous... it's cute!
I am glad you are finally getting some answers, as hard as it is, not knowing is so much worse for me.
Oh, and her VEEG pictures are still gorgeous? How is it that these kids could still look so super cute after something like that?
Yeah, I meant to mention, too, about she managed to pull off looking so cute with the EEG leads ... I kept thinking about you having to shampoo it all out later on, though. :)
I forgot all about the metabolic thing. Too bad.
We will be getting there Saturday sometime, so you can come Sunday or Monday. I'm not sure what day Denise is coming, I know she got the hotel for Sunday night! I can't wait!
Great info! I'm sad that she can't try the ketogenic diet...but happy that you at least have some answers. Keep on being the amazing mom that you are!
Thank you for the updates. I come many times daily but haven't had time to comment. I am praying for her seizures that you can get some control over them and they won't control you. Love your son's haircut.
I want to say that Emily is a very beautiful little girl. I love her pretty smile and her wildly curly hair.
I miss your son's hair though. I liked his afro, I thought it looked great on him. Now he looks like a soldier. But all that matters is that he likes the haircut.
I hope Emily's seizures will get better and that the new medicine that you plan to try will help. I have no idea what it is like to have seizures, especially the kind that makes Emily gag so much. That must be horrible.
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