Oh the humanity!!!

Abigail had a slightly better day. She was not as cranky, but she was also not her usual gleeful self. As of this moment we have only seen one seizure today. That being said, we are seeing a well developed range of emotions. She has always played the happy or sad card fairly well. Now she has developed several new cards to add to the mix and throws them at you like a 10 year boy at a Pokemon convention.

Lets see....we have:

I am so pissed I am going throw everything within reach card.
I am going to cry (actual tears no less) at the drop of a hat card.
I am going to giggle, laugh maniacally, and scream a high pitched burst all in the space of 3 seconds card.
I am going to be playing quietly listening to calm music one second and then lunge at my sister and head lock her in a hug while screaming KISS HUG...KISS HUG...KISS HUG!!!!!!!!!!! card.
I compare that last one to Inspector Clouseau's (original pink panther movies) man servants random kung fu attacks.

Fortunately we are used to emotional side effects for Abigail when it comes to medications, since we are using food as a medication we are not surprised to see side effects.

Abigail has tried many different Anti Epilepsy medications. ACTH (cushingoid effects made her look like the Michelin Man's love child), Topamax (No effect), Zonegran (Horrendous emotional instability..no effect on the epilepsy), Lamictil (No effect), Vigabatrin, stopped the seizures for about 9 months, we took her off the meds and they came back. We put her back on Vigabatrin and the seizures dropped in frequency and intensity but have never fully gone away again. I am sure there are more meds but I can remember them all right now.

I am sure Abigail is going to balance out as her brain and body adjust to the new chemistry her body is producing. Even when she is cranky these days she is communicating her needs verbally which is more than she has done before.

I thought you all might want a picture to make you go...awe....

Bad days, Demented Hamsters, and Butter

Today was a bad day for Abigail. Though Abigail only had two seizures for the whole day, she was just a cranky mess. Melinda and I took turns holding her as that was the only method that would consul her. It wasn't so much that she was hungry or tired but rather nothing made her happy all day. Not sure what the problem is but my guess would be that it has to do with blood sugar levels.

I can not imagine what it is like to be unable to eat any sugar or carbohydrates. Maybe I should go cold turkey on my daily caffeine intake? Ban all coffee, tea, and energy drinks so I can feel what she is feeling. Maybe that is just crazy talk......maybe its not a bad idea?

I took Shelby out to the movies today. I thought it would be good for her and I to do something that was just the two of us. We went to see Bolt in 3D, which I have to say was pretty cool, the 3d at least. I spent most of the movie placing the voices of the characters to other characters in other Disney Pixar movies. I have to say my favorite character was the demented hamster, his voice was done by the evil genius from the Incredibles. There was a line of at least 200 people at the theater and I was worried for about 2 seconds before I realized the self serve ticket machines did not have a line. Shelby and I walked right up, bought our tickets and went right in to load up on popcorn and soft drinks. I don't understand why people don't use those machines to by pass the lines but I hope they don't figure it out anytime soon. Shelby and I had a great time. In return Melinda gets to disappear for the evening, I hope she is having fun. Her idea of "fun" is shopping at all the thrift stores in the area looking for the cutest possible outfits for her girls. A mega shopping spree only puts us back $25, and the girls do look pretty darn cute.

This was Abigail's dinner tonight. Cheese, Butter, Cream, Water, and Hot Dog. The crayons were for coloring however I have been tempted to see if there is any nutritional info anywhere for those things? Considering the amount of time they spend in her mouth. The trick with the butter is to put a piece of hot dog on the fork first and top it with butter, then hand her the fork and she does not notice it. Every time I watch her eat the butter I remember the story I have been hearing on and off again over the years about my father eating sticks of butter while working in the family grocery store, in Chicago back in the 1930's and 40's.





mmmmmm...butter.

Holy Crap

Is all I can say. In the last 30 minutes Abigail has identified two colors, sat still with her sister while they colored, asked for multiple items, and is using complete sentences that don't need translation protocols or guides.

I know it does not seem like that big a deal but when your child is 12 months delayed and has cognitive and speech issues, its all I can do to not let myself hope a little more than I have been.
I know its only been five days but the differences are so noticeable.

So far today she has only had one noticeable seizure. That is 1/8th what she normally has.

Awake.

This is going to sound weird but when Abigail is awake now...she is just more awake. She is aware, and engaged with her surroundings and people. She wants to play with you more, she looks you in the eye more, and she is expressing herself more with works. She can sit at activities longer now as well.

Due to her low blood sugar she is still very tired. This could take a few weeks to go away, but for right now she is sleeping very well at night and several naps during the day. Her blood sugar will continue to be low but her body will get used to the lower blood sugar and she will not be so tired.

She slept in till 7:40 this morning, as did we. She has been our alarm clock for ages now. She always woke up at 5:30 on the nose every day. Looks like we are going to have to pay more attention to setting our bedside alarm.

It is very nice to hear her expressing her needs verbally:

Sit down abigail daddy. (translation: sit your fat butt down and play with me old man)

Water more milk cup pleeeeeaaassseee (does the sign for please as well) (translation: stop what your doing and give me more darn fluids)

Abigail go bye bye car now. (translation: I am bored...I want to blow this Popsicle stand)

It has only been a few days but with the noticeable reduction in seizures and her being more aware I would say all the work we have put in and all the work to come has and will be worth it.

Noodles

Kelp noodles....almost completely void of nutrition...and taste.

However they look and feel like spaghetti and to any three year old, pasta is the most important thing in life, in any shape and form!!

When you add high fat pesto and some high fat meat to the mix and heat it up...you have a perfect Ketogenic Spaghetti meal.

Mmmmm and not so Mmmmm

Just realized I have not posted what one of the meals looks like. We are having issues with Abigail not eating her 2:30 (2nd lunch) meal. We are working really hard to maintain the 4:1 ratio even when she doesn't eat everything. The picture to the right is her 2:30 meal. 19g of Salami, 15g of cheddar cheese, 36g of HWC, and 24g of butter. Between salami pieces is the cheddar cheese and butter. Abigail is sporting a sweet creamstash.


Here were today's meals.

Breakfast 6:30am: 7g of bacon (2/3rd of a slice), 33g of eggs (2/3rd of an egg), 70g of HWC, 14g of butter. We spread the butter on each bite of egg and it worked well.
Lunch 1 10:30am: 57g of HWC, 14g of Pork Rinds, 21g of Butter. Spread the butter on the Pork Rinds and she ate it all with a smile on her face.
Lunch 2 2:30: 19g of Salami, 15g of cheddar cheese, 36g of HWC, and 24g of butter. She drank all the HWC and ate two mini sandwiches of salami, cheese, and butter. We maintained the 4:1 ratio by giving some extra HWC
Dinner 6:30pm: 39g HWC, 50g of Organic Kosher Hot Dog, 13g of Butter, 10g of Cheddar Cheese. I have a feeling she will eat it all!

Next week if Abigail is still not eating the afternoon meal we will lower her daily calories spread over the four meals and see what happens.

We are going to pick up some sugar free multi vitamins tonight so we can make sure to balance out her daily needs as much as possible.

At this point we have a 50% reduction in seizures and are hoping for more. 50% was one of the goals we wanted when we started this diet. We want 100% but will take any reduction we can get. It is also to soon to know if the diet is causing the 50% reduction or just the shock to the system. She does seem more aware and is more focused when playing with toys and interacting with other kids.

Abigail has also taken on the sweet smell of butter and bacon...mmmm....bacon....its the candy bar of meats.

Which button again?

Melinda and I were glad to be sleeping in our own beds last night. Being home makes it easier for figuring out the meals for Abigail.

The gram scale we got is easy to use...two buttons, however at 6am I kept hitting the off button to zero out the scale. Did it twice.

Breakfast was a modest affair of Eggs, Bacon, Heavy Whipping Cream(HWC), and Butter.

Lunch Number One: HWC, Pork Rinds (calling them chips) with butter on them. Special thanks to Melinda (the vegetarian) for smearing the butter on the pork rinds.

Many jokes abound about the vegetarian who married the Jew, and are serving dairy and pork on the same plate to their child.

We are planning out lunch number two and dinner. Abigail has stopped liking mayonnaise and we are looking at Brie as a replacement.

Abigail's eating schedule:

Breakfast: 6:30
Lunch 1: 10:30
Lunch 2: 2:30
Dinner: 6:30

We have yet to figure out daycare snacks and how to handle that but we have till next week to get it all nailed down.

We are going to spend today and tomorrow focusing on meal planning and experimenting with different foods.

We miss Shelby and look forward to seeing her when she gets outs of school today! Abigail keeps asking for her and I am sure will lock her into a fierce headlock the instant she sees her!

Abigail loves the pork rinds with butter...I have been watching her chow them down with great gusto.