Ladies and Gentleman we have Ketosis!....and watch out for mountain lions.

We have achieved Ketosis! Abigail woke up nice and cranky this morning with a super low blood sugar count and the darkest purple (3+) ketone marker on the tester. The nutritionist said it was a perfect Ketosis. The doctor had told us a sure fire sign of Ketosis is lethargy. This make take several weeks to go away. On Monday during the day it was all we could do to keep her in the room, this morning it was all we could do to keep her awake. She got to eat a 2/3 rd portion meal at 9:30 today. Bacon, Butter, and Heavy Whipping cream! She gobbled the bacon down then chugged the Cream and butter mixed together. Immediately afterward she was raring to go for about an hour, followed by a nice long nap.

The doctor and the nutritionist were so happy with her progress they let her have a full portion meal for lunch 414 Calories with a 4 to 1 ratio. The ratio is fat to combined protein/carbohydrates with proteins taking priority over the carbohydrates.

Melinda and I spent several hours with the nutritionist and the nurse practitioner today going over meal prep, planning, and the keto calculator program.

There is even talk of letting us go home tomorrow afternoon if she continues to make progress and handles the food well! We don't want to get our hopes up but it would be nice to be home an d in our own space.

I just took a nice long run at a place call the "Dish" it was a 3.5 mile loop either going up or down then two miles back to the hotel. There were two very large radio telescopes at the summit of the park. Not to mention the signs warning me of Mountain Lions. Whats the trick with lions....make a lot of noise? Play dead? Run away?...just kidding on the last one.

Melinda and I have settled into a nice sharing of duties. I take the night shift (this spares Melinda's bad back) we share the mornings, and I get afternoons off. Its all working out nicely.

Have I mentioned how much of a trooper Abigail is??

This is Abgail and Melinda finishing up Lunch. Cheese 1 large piece, mayonaise, heavy whipping cream, and 3/4 of a hot dog. Abigail loved it!

Only Positive

Positive things from today:

Abigail is a true warrior. The kid is just darn tough.
The hospital rocks...truly a place designed with children in mind.
The nurses and doctors are heros in my books. Some of these kids are really really sick.
Our family rocks for all the support they have and are giving us, we could not do this with out them.
Abigail only had four seizures today....to soon to tell but that is a heck of a damn good sign.
My wonderful wife Melinda...no words to describe how much I love her.
The creators of energy drinks...all I can say is thanks.

FOOD!

Abigail got to eat again at 3:30 and 6:30 today. 1/8th of a hot dog 1 teaspoon of mayonnaise, and 1 ounce of heavy whipping cream each time. She really likes mayonnaise!!!

Abigail actually did very well today and is starting to show signs of ketosis. She is slowing down and is not as frenetic as she usually is. She isn't really asking for food that much, but I have a feeling tomorrow may be a little difficult.

She met with Dr. Olson today and charmed the heck out of him :) She has done that with everyone she has met. Not a single person in the hallway today went with out a loud HIIII!!!! Many a sad person had a smile on their face after meeting with Abigail.
Here is Nurse Julia at the receiving end of one of Abigail's Patented Fierce Hugs!!!















Tomorrow we start receiving instruction on how to use the gram scale, measure portions, count calories, maximize fat calories, use a special program to determine fat content to protein and carbohydrate levels.

Here is a picture from the failed Metabolic test, Abigail really did not enjoy it, but as I said we have had to do worse tests before.















There are lots of nice balconies and even a roof top atrium however judging from this I don't think they want kids climbing around to much on the railing!! I always knew Californians were a bit different.















Abigail is doing well, Melinda and I are holding up. Monster energy drinks and large cups of coffee are my friends....very...very...very...good friends.

The fun never ends

Woke up nice and early.

Took a cab to the hospital. Got checked in and only had to wait an hour and a half for a room.

We are sharing a room with a very small newborn. Not sure what his issues are yet. We have asked about a private room but really doubt we will get one. We are more concerned about Abigail bothering another patient then the other way around. Abigail is not really willing to lay in a bed all day. They have lots of things to do for kids. There is a pre-school we can go to from 10am to 12pm everyday, and 4pm to 6pm.

The metabolic test was a bust as she screamed for the whole 25 minutes. The were trying to figure out how many calories a day she would need based on her co2 levels. It was not one of the worst tests we have had to do over the years....but it definitely was not fun.

They let Abigail have something to eat! 1/3 of a meal size that she will eventually be on. I should have taken a picture and will get one of the afternoon meal. One piece of cheese (1inch by 1inch)
teaspoon of Mayonnaise, and 1 ounce of heavy whipping cream. She is starting to slow down the more into Ketosis she goes. This will help keep her from bouncing off the walls.

Overall Abigail is doing great. Melinda and I are on our 3rd round of coffee for the day. Melinda is going to nap with Abigail and I am off in search of food of some kind...what ever the hospital cafeteria has to offer.

Planes, Training Pants, and Car rides.

Left cold dark Portland this morning for chilly sunny San Francisco. I believe it was Mark Twain who said "The coldest winter I ever had was a summer in San Francisco" Its 50+ degrees and beautiful down here, but it feels colder than Portland, everywhere we went there were people on bikes enjoying the sunshine.

The flight was OK..not great..when we were descending Abigail swallowed a life saver wrong, she didn't choke, but it clearly went down wrong. It took several air sickness bags to get over that. It wasn't too bad just a little nerve wracking. I think the people around us fared far worse than we did. Once we landed we had to sit on the tarmac for 30 minutes as there was no one there to drive the gate out to the plane.

Melinda's wonderful friend Kathy was waiting for us and took us to our Hotel by the hospital. The room was not what we expected but they understood and moved us to a better room with more sunlight. We didn't really want to complain as the hotel offers a 50% discount to anyone staying there who has a child in the hospital. It probably didn't help that we checked in while really hungry and cranky.

Kathy took our cranky butts to find some food and our day was vastly improved. We spent the rest of the day hanging out at Kathy's house with her husband Chris and her two kids, Laurel (2.75 years old) and Mary Ann (10 months). Abigail and Laurel went to the park, played in mud puddles, chased each other screaming in high pitched voices, and pointedly refused to take naps.

Abigail's last meal that is primarily carbohydrates for the next two years was pizza. Kind of wish she had eaten more.

Tomorrow brings the 8am metabolic test then the possibility of waiting all day for a room while trying to explain to her why we can't feed her. Not to mention multiple blood and urine tests thru out the day.

On a positive note Abigail went from morning till early evening in the same pull up!!! 14 hours and 5 potty uses, the end of potty training is in sight!

One thing about the bay area that has become clear to me, in my last two visits, is just how much you have to drive to get anywhere around here. Kathy is a rock star in the extreme. We can't thank her enough for helping us.

Abigail had a couple of bad sets of seizures this afternoon and evening, watching them just drove home the importance of what we are doing here and just how much we hope this works.

Getting ready.

We leave for Lucille Packard Children's Hospital tomorrow morning, at 7:30. We decided to fly down earlier to spend time with friends in the bay area before Abigail has to check in at 7:15 Monday morning. I think a nice big dinner before she goes on the restricted diet will be nice. She will stop eating at 8pm on Sunday night and we are not sure when they will let her eat again. It will depend on how long it will take her to get into Ketosis. Abigail will have a schedule metabolic test at 8am on Monday and then we get to wait for a room. We were told this could take all day. All day with a cranky 3 year old that hasn't eaten...oh the anticipation is so hard to bear.

Abigail and I have a weekend morning ritual where we go to Starbucks to get coffee and a donut. We share the Donut on the car ride home. I am really going to miss that.

Melinda got magnetic drawer locks and a refrigerator lock to keep Abigail away from the food once she is on the diet. We don't know what the impact of stray carbohydrates will have on her so we have decided to play it safe. Both Melinda and I have read about kids on the Ketogenic Diet getting a hold of a cookie or even stray cheerios and then having a seizure.

Melinda and I are often asked what this diet does. The best explanation that I have heard is we are changing her brain chemistry the same way a drug would do, but with food.

Abigail, even with her delays, is doing well. Each week brings new words, phrases, and levels of cognitive improvement. She continues to be delayed about 9 to 12 months which at this point makes her a really cute precocious 2.5 year old. I figure she will catch up eventually. You really can't tell the difference between a 7 or 8 year old like you can between a 2 or 3 year old. We are very hopeful about the diet and our research indicates that other children with a similar diagnosis of Intractable Idiopathic West Syndrome respond very positively to the diet. Currently she has 8 to 10 sets of seizures on a good day and upwards of 20 on a bad day. If we can get them to stop or even reduced considerably then all the work and worry of being on the diet will be worth it.

We are going to spend the day packing and cleaning up the house. Shelby, Abigails older sister, is going to spend the week with her Aunt. Thanks Michelle!!!

Below is a picture of what happens when Abigail does not get a nap during the day....