Reset Button

In my line of work as an IT consultant nothing strikes fear into me quite like someone saying "I hit the reset button....just like you told me not to". These usually end up taking 8 to 9 hours on the phone getting it all working again.

I hit the internal reset button last night and got 8 hours of good sleep. Red lined frustration levels are now in the clear, all pressure relief valves are with in normal parameters.

Abigail was so happy to see her nanny, Katy, for the first time in two weeks this morning. She ran to Katy and gave her a gigantic hug and kiss and then proceeded to try and convince Katy it was time to go somewhere...anywhere...just get her away from these crazy people who claim to be her parents. Katy and Abigail go on adventures everyday! Parks, OMSI, Zoo, Target, the Bank, anywhere but here is always exciting to Abigail! I have a feeling Abigail was just getting fed up with being cooped up with the same people everyday, all day.

Melinda and I are going to try and get Abigail's daily routine as back to normal as we can. We both feel this will help her have a sense of normalcy. I am going to take her to preschool for a little bit this afternoon, after she wakes up, and see how she does. I am planning to take her out before snack time at 2:30 and will continue to do so until she is fully adjusted to the diet. She has a special preschool thru the county on Monday, Tuesday, and Wednesday mornings it is thru the the Portland Public Schools and provides speech therapy as well as cognitive and physical therapy to help with the learning and speech delays she has as a direct result of the epilepsy. Her teachers are terrific in both schools and Abigail's enjoys going immensely. We are not sure how we are going to handle snacks at the morning preschool yet, Abigail's diet regimen does not account for, or allow for snacks. I am going to call and discuss options this afternoon with the director.

Abigail's had a great morning with Katy, they went to the park and enjoyed the first sunny day in weeks here in Portland.

We are still seeing seizures, only one or two per day. The ones we are seeing however are barely perceptible with little to no head nodding. Abigail remains cognitively present and they pass quickly. The results have been so quick and positive that it makes everything else that is going on worth it! I hope it continues so we can try and cut back on the Vigabatrin in the next 4 weeks or so!

I want to say thanks to everyone for the good thoughts and support over the last week as we get the diet started, it mean a lot to Melinda and I!!!

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.

Meet Abigail

World meet Abigail .... Abigail meet the world. Pictures later but for now background info.

Abigail is an energentic, happy, 3 year old. She never meets strangers....just new friends. She love everyone and everything.

Abigail has Idiopathic West Syndrome. Its an extremely rare form of Epilepsy. I know your thinking Grand Mal or Petite Mal seizures but the type she has is labeled as Myclonic....or partial seizures. She has 8 to 20 episodes per day. She was diagnosed at 4 months old and is now 3.5 years old. The seizures cause developmental delays and are very detrimental to the development of any infants and toddlers who have them. Abigail is about 9 to 12 months delayed in her cognative skills and has minor fine motor skill delays. Her epilepsy is drug resistant which is often the case in 40% of children with her diagnosis. We have tried every availiable drug on the market that can be used for children. None have worked. We currently have her on Vigabatrin which we procrue from Canada and this softens the effect of the siezures on her day to day activities.

We are out of options for her drug wise and are now going to start her on the Ketogenic Diet. This will start on January 5th 2009.

More info to follow. We have a month to get her ready and additional baseline medical tests to have run.