Kids say the darndest things.

"Does Abigail have a mommy?" Those exact words came out of one of Abigail's classmates mouths this afternoon. Since she has never met Melinda, I understand the 4 year old logic. This was also the same precocious 4 year who uttered the famous line.."Does Abigail speak English"? Morgans mother was mortified but relaxed when I almost choked laughing so hard.

I spend Tuesday and Thursday afternoons at Abigail's preschool so she can have social interaction with other kids her age. I play the role of a third set of hands to keep Abigail out of trouble. Back in the fall we had hoped she would be able to spend 2 or 3 hours at preschool with out one of us there but after 30 minutes it became clear that was not going to work due to her developmental delays and lack of speech skills. Melinda and I feel it is important that Abigail get the social contact, and since I have the more flexible schedule I get to spend my Tuesday and Thursday afternoons hanging out with 13 three to four year olds.

I really enjoy it...a lot!

When I dropped Abigail off today, Will and Heather shooed me away and told me to come back in an hour. One tall mocha, one depressing newspaper, and a stroll thru the game section at Blockbusters later, I walked into the preschool not knowing what to expect....she didn't even know I had left! She had spent the hour playing at the sand table quietly. To think I was actually worried while I had been gone. I missed playing with the playdoh, popsicle sticks, and reading to a pile of kids. As happy as I am that I can leave Abigail the preschool for an extended period of time now I am really going to miss being there.

We received a great list of ketogenic recipes that don't require drinking the cream one of the followers of this blog ...Thanks Fawn!!! We really look forward to trying them out as Abigail does not enjoy drinking the cream anymore.

Abigail had another stupendous day! Lots of fun play times and interactions. Her big sister, Shelby, even commented on how nice it is to play with Abigail now.

So sad :(

It was the saddest sound I had ever heard. Melinda was feeding Abigail her new favorite dish, (the shiritaki noodles with cream sauce) when it was all done Abigail picked up the bowl then turned to look at Melinda and I, and started to cry...."More" she cried. "MORE PASTA!!!" she insisted. Tears were shed, screams were wrought. It got even better when we tried to make her drink her cream.

We have lowered her calories to 1300 per day and it seems to be finally helping. She is hungry come meal time and seems to get enough to eat after the meals. She more often than not will ask for more but can be distracted to think about something else. That being said she really really likes the pasta dish Melinda has worked up.

I think Abigail has had it with the whipping cream, not that I blame her, we regularly have to administer it now with an oral syringe.

Abigail had a great day, lots of play time, and she had fun at both her morning and afternoon preschools. I managed to slip out for some coffee this afternoon, during class, and she never even noticed I was gone. Her afternoon teachers have said that we might try extended time periods with me out of the room to see how she does. In the two hours we were at class today she never came looking for me once, well there was the brief visit she gave me at the arts and crafts table where she destroyed the Popsicle stick creation I had spent 30 minutes gluing together, piece by painstaking piece...I had forgotten how long Elmer's Glue takes to dry.

We are going back and forth with her neurologist team in California and her pediatrician here in Portland about the breathing change Abigail has started doing. They are short rapid breaths...almost pants and she does it quite often. Her pediatrician says it due to being in Ketosis and that if she stays alert and active that she should be fine. We are hoping to hear how the converstation between her Pediatrician and the Neurologist goes to see if they want any addtional tests. We test her urine at least once a day and the dip stick only gives us so much information.

Abigail is so much more aware of everything during the day it is amazing to watch her watch me, Melinda, Shelby, her friends, and Teachers. She is learning at such a rapid rate and picking up new words every day. We used to only see one or two multiple word sets per day. Now she is regularly making sentences and asking for things she wants.

Getting there...

We are finally getting there with meals. They are getting a little easier to get into Abigail. Melinda has perfected the Shiritaki noodle dish to the point where Abigail will chant..."Pasta, Pasta, Pasta" (Every time she does it I hear Al Pacino's voice yelling Attica...Attica...Attica!). We have had two days now where it hasn't been a major issue to make sure she gets her daily calories. We are cutting the Calories back again to about 1300 a day with a minor drop in protein. We were worried we were not going to be able to drop the protein with the calories as it would have been almost impossible to keep the 4:1 ratio with the higher protein and the less calories. For the first time in three weeks Abigail has asked for more dinner which is actually a good sign.

Abigail had a great day, she went to the children's museum and painted her face(I have a picture I need to download of that)She interacted with the other kids at an appropriate age level and just had an over great time playing with all the toys.

Overall she is doing well, we are not seeing any seizures, just some periodic weird breathing that we are going to research and maybe ask the doctor about, but nothing that looks even remotely what her seizures used to look like. We have an appointment on the 11th of February with her local Neurologist and we may discuss cutting back her vigabatrin if everything continues to look good!

Sleep still sucks, but either we are getting used to it, or it might be getting better for her really really slowly. I have doubled my caffeine intake since the 1st of the year...not your normal New Years resolution. Thank goodness I am already in shape or I am sure I would be in trouble.

Found this on the camera

I love finding pictures on the camera that Katy (Abigails nanny) has taken.

Duplos...OMG!

Abigail had a good day today! She discovered the Shirataki noodles with egg, butter, and cheese! I haven't seen her eat that fast in weeks! She kept asking for more!!!

Since Abigail now loves blocks so much Melinda bought 1000 off of craigslist for $40!! They needed to be washed as they were owned by several little boys before us! They fill the tub 12" deep!! Abigail keeps wanting to go in the bathroom where they are now drying to play with them!

I want to play with your watch...

Has to be one of the longest sentences I have ever heard Abigail say. Then the old Abigail came shining thru with a high pitched scream, when I did not respond quick enough due to the utter and complete shock I was trying to blink thru. When she was done with my watch, she handed it back to me and said "All done watch, daddy take".

Neither Melinda nor I have seen anything even remotely close to a seizure in over two days. We are still holding our breath and will continue to do so for a few more weeks as we have seen this before with some of the other drugs she has taken before. The main difference now is the rate at which she is catching up. Her age appropriate play and level of alertness is amazing. I feel that if she can be seizure free for at least a month then we may very well be onto something!

Food continues to be a challenge and more often than not we have to resort to shakes to get the calories in her. We had success tonight with her new favorite, that being the ketocal pancake!
Melinda emailed Abagail's dietitian to find out if we can lower the calories again because Abigail has actually gained 1.5+ pounds since leaving the hospital two weeks ago, one of the side effects of this diet is you loose weight, not gain it. We both feel if she were hungrier we would not have the issues with food we do now. She is sleeping moderately better which is a blessing as Melinda and I are slowly but surely catching up on sleep.

Abigail is all about blocks of any kind and has two sizes of Lego's and a hoard of bristle blocks that she plays with constantly. When we leave the house now she has to have three or four to entertain herself while driving around.

The roller coaster is slowing down but I have a feeling the designers have at a couple more loop de loops for us before we get of this crazy ride :)

Where does she get if from.....

She is so stubborn! I have no idea where it comes from. Melinda and I are like blades of grass in the wind we bend so easily and freely. (read sarcasm)

I gave Abigail her dinner tonight and got this look:














I swear she is thinking, "What!...are you kidding me...freaking muffins???"

We settled on the almond flour cookies and 44g's of cream. I have never seen a 3 year old be so grudgingly about something. I swear she was rolling her eyes at me...a trick she learned from her soon to be 11 year old sister no doubt.














Abigail is all about blocks and legos right now, she spends hours assembling small components that are later assembled into larger structures. The tower above was a partnership with her sister. I have a feeling she will be an Ikea design specialist when she grows up. Designing something that can be assembled with minimal cursing, blood letting, and only one small allen wrench in two hours or less.

She is back in her morning preschool and is adjusting well. Each day she gets better at being a part of the group again. She had a great time at her afternoon preschool yesterday and is looking forward to going tomorrow afternoon. Melinda is taking her to see her pediatrician tomorrow for vaccinations and a regular check up. Just normal stuff.

Over all she is doing well, we still have ongoing sleep and crankiness issues right now but I hope to see those get better soon.

Oh man she is cute.

Abigail has started to take more of an interest in dress up and costuming! She got a hold of my running hat in the picture to the left...its was just so darn cute that I managed not to think about when the last time was that I washed that hat!

Abigail is doing really well, she continues to explore the world around her. She is interested in everything and everyone and listens to you. Her ability to follow direction is amazing.

Melinda's Mom Terri took Abigail and Shelby for a few hours yesterday, allowing us to go have a child free lunch and shopping time. It was very nice and we really appreciated it. Terri and Jim both commented on the difference in Abigail yesterday. The were impressed by how attentive and calm she was, as well as her ability to focus on what ever she would be playing with.

The biggest issue we are having right now is getting her to eat solid food. She really likes the shakes, so I guess as long as the ratio is right and she is getting what she needs then we will go with it for now. She is also not sleeping well, we are not sure what is going on, but she wakes up several times a night very upset and not willing to go back to sleep. We don't think its a seizure but she is clearly either not feeling well or is having bad dreams, I hope it smooths out soon.

Its been a crazy two weeks and I think things are starting to level out a little bit. We are adjusting her meal cycle to breakfast, snack, lunch, snack, and dinner. We feel this will work out well with snack times at her two schools. We really want her to stay social with her friends and taking her away at snack time would really affect that.

Abigail gets to go back to her Monday, Tuesday, Wednesday morning preschool tomorrow and I am excited to see how she does. Her snack will be 6g's of the fried cheese and 41g's of whipping cream. Its a pretty decent portion so I think she will be OK.

I could be biased...but she is really cute.

Peek a Boo

I feel like we are playing peek a boo with these seizures. I know she still has them but they are not like they were before.

Is it a seizure? Is it not a seizure? The head jerk and upper body sagging that we used to see is gone but there are times where she is clearly having what I would have to call an "episode", her breathing falls into line of what it used to be when she had a seizure before the diet, she wrings her hands, and looks confused. No head nod or other tells. She is fine in about 2 minutes and carries on like nothing happens. This only happens once or twice a day. Heck, I get confused and wring my hands at least once a day too, the sobbing and rocking in a fetal position maybe every other day.

Everyday Abigail continues to improve and has started gaining ground on some of her developmental delays. She speaks in complete sentences, plays with her sister and by herself, and is more curious about the world around her. She apparently has decided that nap time is for the weak, which makes me sad, because it was always a good excuse for me to take a nap as well.

Words of the day are "Fried Cheese" made by the Specialty Cheese Company, look it up and buy some. This stuff rocks! I am glad it comes in little packets other wise I would be eating it by the pound and there would be none left for Abigail! Its high in protein and fat; and it eats like a nice crunchy chip. 12g's of this wondrous cheese and 44g's of cream make for a nice 10:30 or 2:30 lunch for Abigail.

We are also modifying recipes so that all the food she can feed herself, her blossoming independence conflicts with us spreading butter or cream cheese on each bite of food.

Giant Frogs!

Yesterday was the best day ever...until about 6pm.

Good stuff first! Abigail was happy, calm, and was like a normal 3 year old. We went to Small Friends preschool and she greeted all her friends, played by herself, painted, worked on different art projects and was just a joy to watch. Her teachers were floored, the other parents were amazed. Its like Abigail has woken up from a two year nap and is finally engaging with the world! When we got home we played with large legos and baskets of other toys for almost 2 hours. It was great to be interacting with her on such a personal level.

At about 6pm Melinda says, "Does she feel warm to you?" one kiss test later I am digging out the digital thermometer and sticking it in Abigails arm pit. It jumps to 99 from the gun and climbs to 99.9...add a degree for armpits and she was at 100.9. We were at a loss as to what to do about the Tylenol to reduce the fever. All her old childrens meds have sugar, and no one makes tylenol in less than 500mg's she only needed regular strength. We could have ground up one 250mg tablet and put it in water for her. But no, we live in America where everything has to be "Super Sized" or "Extra Strength". Nothing is more frustrating than going thru the name brands and off name brands at 10pm at the store trying to find "regular" strength Tylenol. Melinda placed a call to the pediatrition on call while I was at the store and gave them my cell number. I was rescued by the doctor telling me to just use 200mg of Motrin ground up in water .......or use 250mg Tylenol suppositories....the only drug medium, not left, nor wanted to be "Super Sized". Based on my long silence after that recommendation, the doctor said the Motrin would be fine and would do the trick.
Abigail did not go to sleep last night until about 11:30 or 12, she was so miserable. She only had the cream from her afternoon lunch and we had to use a Keto Shake for dinner as she refuse her solid food due to how she felt.

This morning we could barely rouse her and once we did she could barely stand on her own. We decided to skip a solid food breakfast and went straight to a Keto Shake. The fever was gone which was good news, however she could not hold the sippy cup nor would she open her mouth to drink. I ended up having to open her mouth for her, hold the cup in place, and talk her thru drinking. Once she had a few sips she mustered up enough energy to drink more. At about the half way point she was able to lift her arms and hold the sippy cup on her own and finish the shake. She was able to situp and smile a huge warm smile at Melinda and I, as well as climb down from the bed and quietly demand that as long as both of us were standing around, at the very least one of us could read to her. By the time Katy got there she was hopping around and feeling much better.

Abigail had a great day...ate lunch one and lunch two, as well as a nice trip to the park to enjoy the sun.

One of my clients bought Abigail a stuffed frog! Its very soft and squeezable, that being one of Abigails favorite activities....squeezing hands, heads, faces, exposed pieces of flesh...those little fingers really hurt! She was not sure what to think of it at first but now she loves it!!!

Moving right along

Abigail continues to amaze me as to how tough she is and is moving right along in getting back to her normal happy self. My wonderful wife is a kick butt researcher, she found a great recipe and made KetoCal muffins tonight for Abigail. Abigail loved them. She is still more emotional than normal but she is more aware of her surroundings these days and is engaged in everything she does.

Please excuse the messy kitchen table that doubles as my desk I try to keep it clear but it is a losing battle!
That's Shelby in the back ground suffering thru 5th grade math homework.
The best way to describe the muffins as very dense corn bread slathered in butter.....mmmmm buttttterrrrr

Eggsellent

Much better day.

Better food consumption, who wouldn't like pork rinds with butter on them! And less temper issues.

I want to know who designed this roller coaster ride we are on right now so I can send a complaint letter.

Melinda found a recipe for a pancake from the people who make the Keto Cal shake mix! Its an almost perfect 4:1 ratio. It produced a 6" pancake (that's 15cm for any reader outside the US :-) )

It was the fastest I have seen Abigail eat in over a week! She loved it and keeps asking for more, she got every last bit!! I would compare it to a Dutch Baby pancake. Dense and eggy. All that was missing was a bath of pure maple syrup...which of course I know she can't have. We will try the melted butter with sugar free flavoring in it as a syrup next time.

Abigail had a great time at her Tuesday/Thursday afternoon preschool. We only went for an hour but she was excited to see all her friends. She wouldn't stop talking about "Teacher Will" and "Teacher Heather" on the way there. As soon as we walked in the door she got all shy and quiet. It was rather cute.

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!!!

Are we there yet?

Remember the long car rides you used to take in the summer with your parents as kids. Your older sister on one side, your older brother on the other. The car is small, loud, and has no air conditioner? The snacks lovingly packed by your mother are hours gone. The sun has turned any uncovered vinyl to a searing punishment that keeps you from moving. You feel the words forming in your mouth and you fight to keep them in. Not five minute before; your father had threatened to pull this "beeping" car over if he hears one more peep out of any of us, and your mother had backed him up by screaming "Sit on your hands" in a rarely used voice. You know you are going to pay, but the option of getting out of the car; even for 5 minutes while you get yelled at is a better than staying in the car for one more minute. Plus your hands go numb after 5 minutes of sitting on them anyways. The words emerge from the corner of your mouth and get louder as the sentence continues...."Are we there yet?" you blurt out rapidly.... You smile as the squealing of brakes and the pressure of the 1970's lap belt squeezes your mid section.

Thats kind of how I feel right now.

Are we there yet?

I am not sure where is, but Abigail had a really tough day. She flat out refused to eat dinner, I barely got lunch 2 into her, she didn't eat all of lunch 1, and breakfast was an effort due to the lack of coffee, for me....not her. She is tired, cranky, and seems to have started channeling a small demon I believe to be from the 6th layer of hell. We gave in on dinner and had her drink a keto shake just to get the calories in her.

I spent 15 minutes tinkering with my cyclocross bike and found some form or fashion enough of zen to help get her ready for bed.

I have a feeling we only have a week or so more of this before she fully adjusts.

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.

Get the Heck Out

Just a quick note for today. I will write more about today...tomorrow. Everything is fine its just been a hectic day.

Abigail went so smoothly, medically, onto the diet that they kicked us out of the hospital!! Well they didn't kick us out but they said we could go home. I am writing this from my own kitchen table and not propped on the sleeper couch in her hospital room. Dr. Olson and his team were very impressed with how well Abigail went into ketosis and is handling the diet. She is still cranky and a bit lethargic from her low blood sugar levels, but over all she is accepting the diet very nicely. They felt there was no need to keep her in the hospital any longer. Every child is different when going onto this diet which is why they feel its best to hospitalize at the start of the diet. She is still asking for her favorite foods like chips and cookies but we have plans to do some interesting things with pork rinds to replace the chips.

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....