It's a wrap

Today I wrapped the kids Christmas presents. ALL OF THEM! I am so happy that's over. I thought I'd do a few then just kept going and trudged through and got them all done! Now for the tree. We've been getting a live tree. When we had a fake tree I put it up sometimes before Thanksgiving, but I don't want dead needles all over the house so we'll be waiting a while on the tree this year. Though Christmas is just 25 days away!!!!! YIKES! I decided this year I want a little tree. Usually we get one about 7 ft. Goes up to the ceiling. This year I want a little one, maybe 4 ft. I don't know why, I just do. When Isaiah was little I made a little tree for his room, decorated it with his Matchbox cars. Since Naomi's been sick I just feel so ho-hum. I don't really want to go all out with the decorating. A lot of days I already feel overwhelmed and decorations are just one more thing to put up, clean off, take down. It's not just Christmas, I've pretty much skipped all holidays. I used to decorate for Thanksgiving, Easter all that. Hearts in the window for Valentines. Oh, well . One day, God willing, she'll be able to help make decorations and it'll all be do-able again.
Man this turned depressing! I wasn't headed in this direction when I started!

What more could there be???

Naomi was sick, had white spots on her throat but the strep test came back negative.
One of her ears was red also.
She was on antibiotic for 10 days.
She had a cold.
I think the Cal Mag Zinc and the antibiotic don't mix, they gave her tremendous gas and some crazy crazy diapers.
Now she's much better, acting sleepier and if her nose runs it's clear.
I did get her flu shot this week, hopefully that'll hold off the flu. But now what else could go awry???? HMMMM.......... today she was sticking her finger in her mouth, fell asleep with it in her mouth actually. Could it be...... her 2 year molars finally coming in????? Oh great, just what we need, one more irritant! Her ketones are never going to go up at this rate!!!!! I haven't officially spotted a molar yet but I'm not about to put my finger in that little piranha's mouth to check. She'll be 3 in just over 3 months, those teeth should be coming!!!!!!
I blame her Daddy for this, him and his hillbilly teeth! He's from West Virginia and you know.... the further South you go, the fewer teeth they grow.
My dad's family is from WV too, though that doesn't disprove that saying one bit! :)
She really is like a piranha, today I picked her up and she got mad and bit me right on my jaw (jowls,?I think I do have jowls!) I nicely sat her right back down and just walked away..... Man that hurt!!!!

Out to dinner

I took Isaiah to a local restaurant where we met my parents and he is going to spend some of his vacation from school with them. My husband offered to stay home with Naomi so I could go out to eat. When we were almost to the restaurant I realized I left my cell phone at home. So I spent the whole meal nervous that now would be the time Naomi had a really bad seizure and here I'd be, out to dinner, no way to be contacted. I was gone a whole HOUR! WHOOOPEEE! It seemed like they were taking forever getting us our food. I ate and left before the others finished. Just kissed Isaiah good bye, thanked Dad for the meal and out the door I went. I drove home trying to go as fast as I could while still keeping an eye out for deer (it's deer hunting season, they're running). Fifteen whole minutes last, if that, when I finally got to the 1st of 3 traffic lights before home, I realized how tense I was. I was gripping the steering wheel and my back wasn't even resting against the seat. I kept saying over and over in my head "be with her God and watch over her".
I sped into the garage, shut the door and came in the house and found her sitting on her Daddy's stomach while he laid on the love seat, her usual spot. Fine and dandy. So I breathed a sigh of relief and set to cooking and weighing her last meal of the day. 7 whole grams of chicken!
My friend was over the other day when I was getting ready to feed Naomi and she saw her meal for the first time and said "OOOOHHH us fat girls feel so bad for you! We love our food!"
HAPPY THANKSGIVING !!

Flu season

I finally called the pediatricians office today and made an appointment for the kids flu shot this afternoon. When I pick Isaiah up from school I'm going to just tell him we have to go to the Dr's for a flu shot. He HATES shots. He's actually just getting the nasal mist, but I'll let him sweat it out.
I think Naomi will have to have the shot or "pinchey" as Isaiah calls it. He'll have to sit outside the room with his fingers in his ears while his Sissy gets her shot. He can't stay in the room. He's such a tender hearted soul!
On another note. Last night Bill was bouncing a ball in the house and I was in a room with the door closed and the ball hit the door and I opened it and just looked out saw it was him and closed the door. Then I heard it again and also heard Isaiah yell "Dad don't hit the damn door" I opened the door and said "what are you teaching him!?"
and Bill said "ME?????"
Isaiah said "I heard it on a cartoon"
Niiiiiice! Thank you Cartoon Network. My son just got a 15 minute lecture from his father about the word he used and how it is bad but you can say it if for instance you're talking about the Hoover Dam. I was in the room thinking, wrap it up Bill! I was over his lecture I can't imagine how Isaiah felt! Maybe I'll tell Isaiah since he has a potty mouth now he has to get the shot! OR Maybe I won't even tell him it's a flu shot, I'll tell him it's a shot they give kids when they say bad words.

Naomi

Well, she's been good, she's been bad. It's been strange.
One day she has a good day (none seizure free yet). The next day she might have a terrible day. Her mornings have been better but then it's nap time and she wakes up and has terrible clusters that sometimes go 20 minutes and I'm about to grab the Diastat when they stop. The big clusters she usually falls asleep again afterwards and then wakes up fine, no more seizures.
Today she had a great morning. She was laughing, loving and just being silly. She even took a 1/2 hour nap in the morning since she did get up at 5! she woke up and was just fine. Then about noon she got really tired and just looked awful so I took her upstairs and laid down too. I was sleepy also! She slept about 2 hours and woke up and for 4 minutes her seizures were light then for 6 minutes they started to really jerk her then at the 10 minute mark they got really light and were mostly as strong as a hiccup for 5 minutes but they tired her out too. So all in all they lasted 15 minutes.She laid back down beside me for about 20 minutes. Since she's been awake she's so calm it's eerie. Bill keeps feeling her head to make sure she doesn't have a fever. She is acting like she was when we were at the hospital. She's sitting in her bean bag chair watching t.v. We put a musical in and she's rocking back and forth to Thomas' Trackside Tunes. She's very quiet too. Maybe her ketones are finally going to kick up. I hope so.
I messed up and gave her 62 grams of cream with her meal instead of 49 grams. It'll just mean a higher ratio but she got an extra 40 calories. Oh well, accidents happen. I had 2 cups of cream made up, labeled and everything and just happened to grab the wrong one and didn't even notice!

That ain't me

Last night as I lay in bed I was thinking how some of the blogs I see the kids and homes look immaculate! I mean their kids hair is never out of place they've always got a cute outfit on, matching from head to toe. The homes look freshly cleaned, nothing out of place. Well that ain't me! I wish I could be more like that but, I just could care less if the house looks good all day. I am not going to follow Naomi around and pick up everything she gets out of the toy box. I do that a couple times a day, but if you came at the wrong time you'd never know it! Mostly stuff in our house gets picked up and placed on a flat surface out of Naomi's reach, such as the top of the entertainment center or the dining room table or buffet. A lot of it's paper work. Between Isaiah's school sending this or that home and Naomi's hospital, doctor, school, therapy stuff there's just no end to all the paper that makes it into this house! It usually gets piled up until I go through it and throw 99% of it in the trash. For Christmas this year I'd like a dumpster, that's right. I'd like a dumpster placed outside my front door and then I'd like the time to go through every room in the house and throw away anything that we've hung on to but hasn't been used or even looked at in the last 6 months! And the toys! I think Isaiah's got every toy he's ever been given in the last 9 years. But some of it you just look at and think how much money is tied up in it and hate to just throw it away. For example Thomas the Tank Engine. He loved Thomas, but he's 9 now and not about to get the trains and track out anytime soon. But when we look at the tub (s) full of Thomas stuff we see $$$$$$$$. I hate to tell Naomi but she IS gonna be a Thomas fan too! Oh, there's not doubt about it! She WILL like Thomas! or else....

Kath & Kim

This new show Kath & Kim is really irking me! Get to The Office already!
Glad I got that out of my system!

Her lips are sealed!

Today was a therapy day. I was excited because we'd called off earlier in the week and Naomi has been so vocal lately. Well, she giggled and said "bear" in physical therapy. Then we went to occupational therapy where she barely made a peep. In fairness to her a VeggieTales CD was playing and she was really listening and sometimes rocking to that. Then came speech therapy and she just looked like her little eyes were 1/2 shut and I thought for sure she'd pass out as soon as we were in the car. She hardly parted her lips during the 1/2 hour of speech therapy. Then we got in the car I handed her a sippy cup, expecting slumber to soon follow and guess what. She started going through her words. She really likes yelling what sound like "bear" although she was just looking at a Sesame Street book and pointed to Big Bird and said something similar although that did sound more like "birrr". It's coming, hopefully those ketones will kick up and she'll continue to improve. Got to get her over this cold first I suppose.

Thanksgiving

If all went well we told Isaiah that we'd try to go to our friends in North Carolina over Thanksgiving. Well things haven't went well. Bill's work is iffy. Naomi's diet still needs tweaking. None of us can seem to stay healthy! So I just assumed he knew we'd be staying home. When I asked him if there was anything special he'd like to do on Thanksgiving he said "Go to Austin's?" You'd think by now he'd realize going to Austin's takes some planning. We can't just jump in the car and drive 8 1/2 hours away. I told him there's no way we were going to make it to Austin's for Thanksgiving, it's gonna be a low key Thanksgiving this year. My husband feels like it'd just be torture to have the house smelling of good food when Naomi can't have any. What ever! I don't think it'd matter one way or the other to her. I'm all for going out to eat anyway and if Bill volunteer's to stay home with Naomi while Isaiah and I go out with my Dad, more power to him! My mom has to work anyway. I'm not a turkey fan! Sorry, I'm just not.
I really wish we could just blink and be in North Carolina! I really miss everyone there too and would love to make the trip, it's just not possible right now!
Oh well, there will be time.

Support Group

I recently signed up for the Yahoo Ketogenic support group and what a wealth of information!! It's so nice to know there's others out there struggling with the same issues, ketones, meds etc..
There's also files that tell about different things you need to know while on the diet. Lots of support from people who have already been where we're at.
So glad I went over there and signed up.

A Good Day!!

Even though Naomi woke with a very runny nose yesterday, today was a very good day! Yesterday and today her seizures were as light as hiccups. Today she was also very vocal. I lay down with her for a nap about 4 and she pointed and I said "fan?" and she said "door" then she went on reciting all the words that had been lost to her since about January! "baby, ball, door, no, doll" over and over again and of course what used to be her favorite "bear!". It's nice to know once in a while that it's all still in there!! She kept patting her doll and saying baby then she'd spike it like a football and Bill asked is she saying "doll" or "down"? Either way is right so what ever at least she's trying to communicate. It was all lost to her for so long on the meds.

The King

Just wanted to share this because it's so typical Isaiah.
He was at my mom and dad's last weekend (this weekend too!) , my Dad was at the farm feeding pigs and Isaiah told my mom "I feel like a King, well, not when Papaw's here when he's here he's the King". My mom said "Oh yeah? Well what does that make me? Queen?" and Isaiah said "No Grammy, you're the Royal Fool!".

That's why!!

I have checked her ketones religiously the last week. They just would not stay up! Of course she drinks like a fish so her urine ketones have to be weak! The child can chug 12 oz. in a blink of an eye. I called the Ketoteam last week and left messages and emails, aggravated that everything was off. Then this morning she woke up with a runny nose! She's probably been getting sick all week and her ketones would be lower. So I guess we can just scrap this week!Maybe even the last 2 weeks! We've got several things working against us starting this diet. The first was the constipation. Did I mention I think the Blue #2 dye in the Keppra is making her stool (a.k.a poopy) sage green!? With that and the chunks of carrots, her diapers look like she ate a Christmas ornament! :)
Then there was the time change. We fell back an hour meaning she got up at 5 a.m. until 2 days ago! It didn't however seem to affect her bedtime. She still wanted to go to bed between 8 and 9 p.m.
The next is cold and flu season. I didn't get her flu shot because our pediatrician office didn't get their vaccine's in until the week we were in the hospital. When we came home form the hospital her brother had a very bad cold and we were making him constantly wash his hands, use hand sanitizer and we wiped antibacterial wipes over everything he touched. Still here we are 2 1/2 weeks into the diet and she's got a cough and cold. Though she's not coughing too bad yet. I bought some Vic's to rub on her tonight. Hopefully it'll be easier on her than it was on her brother! I ended up getting him on antibiotics. The Dr. said a lot of walking pneumonia going around. The therapist said they've got a lot of kids out with strep and vomiting. It's so early for all this to be starting!
Of course the temperature has dropped significantly here today and it's been snowing all day. The ground is still too cold for it to stick but BRRRRRRRR it's cold and just slapping you in the face when your outside. Naomi LOVES it when the wind and snow blow in her face she laughs so hard she starts squealing! She is nuts! Isaiah loves the snow too, he loves playing in it. You'd think he was playing in sand at the beach. He'll stay out there hours! I like to look at it but I get tired of it really fast. I'd rather look at snow than the brown grass and mud though!

Tweaking

Naomi started out on a 3:1 ratio, 950 calories and 3 meals a day.
We added 100 calorie snack for bedtime to try to keep her ketones from vanishing over night.
Now I've talked to the dietitian and we've decided to bump her up to a 3.25:1 ratio and give her 1050 calories a day in 4 meals.
Naomi wakes up at 6 and goes to bed around 8 or 9 p.m. That's a long day (she does nap) so I think we'll try feeding her at 7 a.m., 11 a.m., 4 p.m. and 8 p.m. Or something along those lines.
Hopefully that and the extra fat will keep her fueled throughout the day and night.
Her ketones are 0-5 in the morning! They creep up to about 15 by 10:30 then in the afternoon about 3 or so they're up to 80 but then they sometimes sink back down!
It's so frustrating because I know the ketosticks don't accurately show what her blood levels are. You'd really think there'd be a better way!
I just really want to make sure she has the best go at the diet. I don't want to put her through all this for nothing and most of all I don't want to have to put her on Dilantin! It scares me! After our first visit with our current neurologist they had given me a list of all the drugs used for seizures and I looked them all up. Beside Dilantin I wrote "NO WAY"! God help us if we get to that!!!

2 week labs

I took Naomi for blood and urine tests yesterday, her urine ketones were at 0. Her BHB which I believe is her blood ketones was at 3.34, they were 3.67 when we left the hospital. I believe also they should be at 4+. I'm waiting on an email from the RN to explain further.
What I'm worried about is her blood glucose was only at 66, which I think is rather low. I'm wondering if that isn't contributing to her seizures. Any stress seems to trigger her seizures, why not low blood sugar? It adds to my "not getting enough to eat" theory. She's an active little girl, I think she's burning through the fat she gets!
Also I've of course already Googled "low blood sugar and seizures" and there seems to be a connection.
She's definitely drinking enough! Her specific gravity was 1.002 (water is 1.000). She's definitely a good drinker!

Diet

Well Saturday was awesome, then Sunday sucked! Naomi had 75 seizures in about 15 minutes on Sunday morning and some of them really "grabbed" her and her head dropped quick and her stomach tightened up. Her Ketones were low in the morning so at lunch I didn't give her any carbs and by 2 her ketones were high, but that doesn't do us much good when the biggest part of her seizures happen when she first wakes up. At bedtime her ketones were back down to moderate and this morning they were just at 15 which is trace. They should be 80-160, high.
I took her for her weekly weigh in at the Dr's today and she weighed 13.2 KG which is about .3 KG more than last week. Her diaper was wet and I'm about to get out the scale and weigh her wet diaper to see if it weighs near .3 kg! I can't imagine them taking calories away! She was only getting 950 a day then they did add a 100 calorie "snack" at night. ARGGGGGGGH! When you figure 85% of her diet is fat that means in a 1000 calorie diet only 150 calories are from real food! It's frustrating! Trying to keep the ketones up is hard and frustrating when you're doing everything you're supposed to and they still drop! This week I am going to stay away from hot dog and salami meals and basically just stuff her with chicken breast at 2 meals a day and see if that helps. I also am going in to her diet plans and putting in exact types of vegetables, fruits and meats. No more generic 10% fruit or Group B vegetable or lean meat. I want to know exactly what the ratio is for the exact food I'm giving her!
Hopefully we'll get answers, blood work comes Wednesday and I'm anxious to see what her medicine levels are. She used to take Keppra in the liquid form and now I have to crush pills for her. I feel like there's a difference that may be linked to the meds, even though there shouldn't be, it's the same med, just different form.
She's never had such fits of rage where you just can not do anything for her! She gets mad if I go into the kitchen and come out empty handed and will throw her head side to side fall on the floor and sometimes even get on her knees and bite the carpet and pull it up until it snaps back down! We've gotten to the point we just put her down and let her get it out of her system. Then at the end of the fit usually comes a small seizure or two. So it's a loose loose situation. She gets mad or hungry and pitches a fit then she has a seizure! If we try to hold her she either slams her head into us or bites us. Last week one day she bit my wrist so hard I sat her down and went upstairs. I thought "if my dog bit me as often as my child I'd have sent the dog off to the humane society a long time ago!" isn't that awful! I just had to get a break from her! I have 2 bites on my arms and one on my shoulder, it hurts. The wrist hurt so bad I didn't even want to move it.

Chocolate butter sucker, Keto style

I made a snack for Naomi that the dietitian gave me the "recipe" for. It's simply softened butter and Hershey's baking cocoa mixed together and you can add liquid sweetener and a few drops of vanilla extract. It should be good. I wanted it to be good. Chocolate and butter? YUMMMMMY! WRONG! I tried it before I made one up for Naomi and it was vile. Maybe it was because it was unsalted butter? The after taste stayed on my tongue so long it was unbelievable! I think we'll stick to Jello!
On a good note the Cal Mag Zinc has in fact made quite an impact on Naomi's constipation. The nurse warned me there could be some loose stool, we haven't gotten that yet, but I need to call and see if the funky sage green color is a side effect! What a surprise her Daddy got when he changed that diaper! At least it's not fishy like the lovely Carnitor diapers. They could peel the paint off your walls! Think all this talk about her poop will embarass her one day?! She is a girl. Her brother would probably proudly post his bathroom habits! Boys!
Also today was a great seizure day. Even though her ketones were only trace this morning she only had 4 tiny little seizures and they weren't even together. Her ketones were higher towards noon and she took a nap and woke up and had no seizures. I think the ketones being so low in her urine is mostly because she's such a good drinker. She'll have blood test on Wednesday and we'll see what the ketones in her blood read.

Curiosity

Naomi has never paid a bit of attention to what's under the couches. Since starting the diet she's definitely more aware and isn't just flitting from one place to the other leaving a path of destruction. She's actually trying to figure things out. We've always hidden things under the couch from her. Two days ago she figured that out! She pulled up the skirt on the couch and found a beloved and noisy toy, pulled it out and aggravated the dog for a good 30 minutes. Then went around to the rest of the furniture in the room looking under cushions and everything. It was kind of like "what else are you people keeping from me!". Today she crawled under the love seat and laid there until I started worrying she may have found a Pop Tart or something! So I looked and no, she was just laying there. I think she was stuck but it hadn't occurred to her yet to make noise so I'd know she needed help.

Doesn't she look so grown standing there! She's 2 years and 8 months now. She's 36 inches tall and weighs 12.9 KGs or 28.4 pounds.

Bargain hunting

I went to Walmart to buy groceries today because that's where I buy the whipping cream for Naomi's diet. After Walmart we went to Aldi's (everyone know Aldi's? pay a quarter for a cart, bag your own groceries, cheap) they had the 36% whipping cream cheaper than Walmart, it only figures out to about 18 cents cheaper but with as much as we're going to be buying that will add up! There's always Amish at Aldi's, that tells you it's a bargain hunters paradise. The Amish man I saw had no fewer than a dozen jars of peanut butter. This I can understand. I've never understood why they buy saltine crackers like crazy. Usually I see an Amish lady with a whole cart full of crackers, like dozens. How much can you do with crackers. One of these times I'm going to just ask what's up with that!
I finally found some pure vanilla extract that didn't contain corn syrup at another store.
But best of all!!!! This bought a tear to my eye!!!! I was low on gas so I stopped to fill up and it only cost me $21.50 to completely fill my car up! Two months ago it would have been double that! Plus when I decided to stop on $21.50, it was easy, the numbers didn't keep jumping like crazy because each drop costs so much!
I bought acorn and butternut squash to cook for Naomi. Any ideas how to cook them without any seasoning, oil or butter. The no butter thing is killing me. She can have butter she's just got to have an exact amount. I want to cook everything until it's dripping in butter.

Ketones

Naomi's ketones were low this morning, at about 15 when they should be up more like 80. So I didn't feed her breakfast. I checked her urine 3 hours after she woke and her ketones had actually lowered to just "trace". I called the RN who's in charge of the Ketogenic Diet and left a message saying "how can I hold all food from her and her ketones go down?". She called me back and we went over some things and she thinks it's not that her body is showing it's not burning fat because it's burning carbs, more likely she's going too long between supper and breakfast and it's her own protein or muscle that she's been burning so we're going to add a night time snack of about 100 calories. Maybe try to keep her ketones up that way. Feed the fire a little more. Her seizures have been relatively lighter, except after her 2nd nap today (she was sleepier than normal, of course she's up at 5 a.m.!) she had 43 seizures mostly like stomach spasms that made her head drop too. She didn't mind them too much but was a little out of it afterward. I fed her what should have been breakfast at 11 a.m. after I talked to the nurse then I went ahead and made her an eggnog shake at 3 to make up for her missed meal today, and she gulped it down and screamed when it was all gone. I checked her ketones and they're back up to about 80! So I think it definitely was just that she wasn't getting enough. I'm so glad we can feed her more ! We won't have to take 100 calories away from her meals to make up for the snack.

A new era

I lived in western North Carolina for about 3 years. When you've been raised in other areas of the country it is hard to believe the racial tensions that still prevail. To hear from friends your own age about a white high school student getting mad because his white girlfriend said a black student touched her bottom at a H.S. football game and the white boy goes to school the following Monday with a knife and stabs the black kid in the stomach. Or when your friend takes her biracial kids to the school with her for a parent teacher conference with the Kindergarten teacher and lets the kids go play on the play ground, only to find them sitting outside the room when she's done because some kids on the play ground called them the "N" word. Or when a grown black man needs to run to a junk yard far from town to find an auto part for his car and he doesn't want to go alone, he feels he needs to take a white friend with him to go to that part of town. It's sad and it's shameful that this is how parts of our country still are 150 years after slavery ended. I've been out alone with friends kids, and seen the looks other Whites give, thinking you're "white trash" and I just laugh inside! I could not be married to a more white man! But they don't know any more than what they see, me a white woman walking holding the hand of a black child.
A friend called me today and told me I needed to look at An Open Letter at the following address -http://www.theroot.com/id/48726 . I'm still sniffling. No matter what your political affiliation, you've got to admit it's a new era in America. A day has come that our grandparents couldn't even imagine. I'm happy this day has come for blacks in America, anything is possible. I hope this opens the door of possibilities not only to people of all Ethnic backgrounds but also to women and people of all faiths. Lieberman a Jew and Romney a Mormon, maybe now they won't seem like such far fetched candidates. If they're fit to lead I don't think their religion, even though it differs from mine, is a factor. I'm sure Lieberman won't make everyone eat Kosher and Romney won't make us all give up caffeine (sorry really don't know that much about Mormon do's and don'ts).It was a big deal when Kennedy was the first Catholic, but we really don't seem to have gone any further than that. What are we afraid of?

I got out to vote!

Finally! The candidate I voted for WON! Actually I'd have voted for an Obama/McCain ticket. If that were possible in this country. I admire McCain for his devoted service to our country. I just wish his party would have given him the nomination for presidential candidate 8 years ago. Let me just say, I proudly NEVER cast a vote for Bush! Even when Kerry/Edwards ran and I wasn't sold on them. I just felt like -anyone but Bush!

I'd say I'm an independent. Living in Ohio it's no secret how Obama won the state, the Unions. He had Union support from all our local unions. With the factories shutting down and the airline industry troubles and they were backing him 100%. Ohio now has the 2nd highest unemployment rate in the country. My husband was told yesterday that they're going on a 4 day work week, only 8 hours a day, for the next 4 weeks. It's scary! The thing is there's NO where else to find a job, at least one to support a family.
I've heard a lot of people saying McCain would be president "God willing" I just hope they can accept this. God doesn't always answer our prayers with what we want but always gives us what we need.

I'm just glad the whole thing is over. I've heard some pretty nasty things said about both sides. Obviously about Obama's race, which I really think is one of America's biggest downfalls. When I was young there was apartheid in South Africa and they had a black president before us! I'm just proud my son doesn't at all get the big deal about a black man being president. He never knew that at one time that seemed impossible.

There's also some vile things said about Palin's daughter. I'm kind of glad that poor girl can just go back to Alaska and hopefully have her baby and live her life out of the eye of the whole country.
If I never see Joe the Plumber on T.V. again I can live with it! I can not believe how the McCain camp toted him around! Thank goodness he took off his OSU hoodie!

GONE AGAIN!

Last night Naomi's ketones were as high as they could get on the test strip. This morning they were down around 40 so I though I'd check them through out the day to see if they rise. They didn't rise! They vanished! I just checked her ketones at 9am and there's nothing! She had her cheese and strawberries with fruit this morning, same thing she ate at the hospital, and the ketones are gone. I emailed the dietitian, I'll keep an eye on her levels and see how it goes. Gone through my fridge and made sure everything is as it's supposed to be! I think the culprit is the strawberries she had for breakfast. I'm supposed to giver her a certain number of grams of 10% fruit and that includes strawberries, but when I put the strawberries into ketocalc it throws everything off! So I'm changing it to Mott's unsweetened applesauce!
I may have to hold her veggies and fruits for a meal or two. I hate that, she gets so little food already!
Also yesterday after her nap around 1pm she had 108 seizures in 18 minutes. They started when we were coming downstairs. I could just barely feel her thighs tighten up. They progressed into her whole trunk muscles spasming. Some times her arms will go up slightly at the elbow, her head drops, quickly, you've got to watch or it'll just slam into you. Usually her seizures start with less intensity so we can pick her up before she has one that might make her fall to her bottom. She's never had a whole body, loss of muscle tone drop though. That would be scary. The kids with those seem to have them completely unexpected.

OOOPS

Naomi's ketones gone this morning.
The culprit is canned pumpkin!
Winter squash is listed as one of the Group B veggies and I checked the label and there was only pure pumpkin in the can so I figured it would be o.k. Guess not!
She may have to just have eggnog, with no apple juice in it, for lunch. I don't think she'll mind though because she loves it.
I'll have to keep an eye on her ketones all day.
Her seizures are fine though. She actually only had 2 little nods today, one of them was so faint I'm not sure it even was one, but I'm counting it.

Foods on the diet

Luckily a lot of the foods on the diet Naomi already ate. She used to eat more fruit but she can still have fruit, just not so much. She's not big on drinking just water so thank goodness for Walmart's Free and Clear! It's flavored, carbonated water and she loves it. Lots of other stores have their own brand, she can have any of them. The nutrition label just needs to read 0 on everything.
She loves the whipping cream, even when I have to mix canola oil in with it! To make sure she gets every drop out of the sippy cup we just keep refilling it with the Free and Clear until all signs of cream are gone. When she's eating I have to keep the cup of cream in the fridge or she gets mad because she wants it! I don't know if it's because of the taste or because it is probably what fills her belly.
Last night we had pork chops and Naomi had pork chops too. She had to have a vegetable and fat with it so I gave her pumpkin with butter melted into it. My mom thought that sounded good. Naomi ate it like crazy. She'll eat plain pumpkin straight out of the can!
She's often hungry but if we can occupy her with something else she does fine. Sometimes she grabs her high chair and drags it across the dining room floor. It's not a subtle hint! Other times she grabs the dining room chair that I sit in to feed her and tips it back.
We've been surprised that the things on her diet are readily available. There was a lot of mention about coconut oil in books I read, but canola oil works fine too. If a recipe calls for soybean oil, I can go on Ketocalc and change the diet to something I have on hand like canola or vegetable, mayo or butter.
I looked around for 36%- 40% cream before we left. The Great Value brand of whipping cream at Walmart is 36% so that's easy enough, it's also the cheapest brand! Gordon Food Service, which sells larger bulk to restaurants and cafeteria's and such, has whipping cream that simply say 36% cream on the label, that's easy enough! I can add pure flavorings to her cream if needed to make it more appealing. I thought I'd have to order a flavoring that had 0 carbs but it ends up I can just buy McCormick brand pure extracts and they're everywhere!
So for us the diet and the needed foods have been exceptionally easy to get. Thank goodness for the flavored water!

Bowel Habits

Just put that title up so you'd know what you're in for! Like I said in an earlier post.. Naomi had a BM on Friday then on Wednesday when we got home I thought maybe she'd go when she relaxed at home. I waited a while and finally ended up giving her 1/2 a suppository to help her along. That night she went twice, very hard and dry and I'd say about 7 inches of packed poo! YUK and ouch! Then on Thursday she went again, this one was hard and it looked like a baseball had fell out of her bottom! It was THAT big, followed by soft stuff. Then Friday was much better, seizure wise but she didn't have another BM. So Saturday comes and she had 167 seizures in two clusters, by noon. Waited for her to go on her own and she didn't so I gave her another 1/2 suppository and she had about 15 hard big marbles. Today I waited, she's gassy, but nothing has come on it's own so I gave her another 1/2 suppository just to make sure everything keeps moving and still more hard marbles! Her seizures have been much better today also.


I've read that constipation can worsen seizures. I'm just glad I went ahead and ordered the Cal-Mag-Zinc the dietitian told me to get because that will loosen her bowel. There definitely seems to be a connection between her bowel habits and her seizures.
I've noticed that before a bad cluster, when her muscles REALLY spasm she gets warmer than normal. Not hot enough to be a fever but noticeably warmer. I GOOGLED "gets warmer with muscle spasms" and found a medical paper that said it was noticed in patients that there's a temperature rise with muscle spasms. I found a lot of Veterinarian sites that said the same thing about horses, cats and dogs. Why is it so easy to find info on animals? Easier than people!



The time change has her messed up! Instead of waking at 6 a.m. now she's up at 5 and that just makes it that much longer for her to wait to eat breakfast. Thankfully, morning is when she's least hungry. I'm trying to get her back on schedule. She stayed up later than normal last night but she still woke up at 5!

My new internet friend... Ketocalc!

The hospital that has started Naomi on the Ketogenic Diet is enrolled with Ketocalc . It's an online way for me to make up meals for Naomi and then I email them to the dietitian for approval. It has standard meals set up like Cheese/Vegetable. I can go on there and it tells me her calorie level, Ratio and meals per day. Then it gives me a recipe. Basically it's Cream, 10% fruit, American cheese and Oil. I put the oil in her cream and she drinks it right down. I could tweak it if I want, change the type of cheese, change the oil to mayo or butter or some other fat. Then just send it to the dietitian for approval. I'm so glad to have this tool. The dietitian and I already made up 10 meals for her and she's eating every bite of everything we put in front of her. She definitely loves the cream. She can have 3 ripe black olives as a free food per day and for 2 days we gave her them at night. She loved them. I held them last night because her ketones were a little lower than they'd been in the hospital, but she still did fine. If we can just keep her busy, keep her away from home or outside she doesn't think about being hungry too much. The minute you step in the kitchen though, she's right there, standing at the gate waiting to see what you're gonna do.
I got up earlier with her this morning and fed her and her brother about 8 while Bill slept in. When he woke up he was hungry so he fixed himself sausage and eggs. I found him sitting on the downstairs toilet, hiding, eating his breakfast. He feels so guilty about eating in front of Naomi. I just stand at the kitchen counter with my back turned toward her. I try to make Isaiah eat when she does. Yesterday she finished before him and just stood there at the side of the table staring at him, just like a puppy, begging for food.

Did Sissy Break her head!!!!

"Did Sissy Break her head!" is what Isaiah said when he saw these photos! I told him no it's just to keep her from messing with all the wires on her head. It's pitiful looking and itchy after a while, but it's effective! At least this time we had an excellent person to take the whole mess off and she drenched Naomi's head with the stuff they use to remove the electrodes so I'm having a much better time getting her head free of the glue residue!

We took along plenty of books and her Webkinz but what did she play with most?..... straws, yes simple straws. She especially liked the flexible straws from the hospital! She chewed them, she used them as drum sticks or she just simply waved them in the air. They were very entertaining!

Doesn't she look so big sitting there! One nurse came in and said "how old is she about 4?" I laughed and said no 2 1/2. She said "she looks so long!" Well she is long, they had just measured her and she was exactly 3 feet. Most of that is leg!

Notice the expression on her face in the top photo? That's pretty much the same expression she had on her face for the 4 days we were there! She smiled and laughed as soon as we got on the elevator! NO KIDDING!

3 nights in the hospital was enough for me! I heard a mom say her daughter was in there for scoliosis and had her first surgery, but would be in hospital for 8 WEEKS! and have multiple surgeries!

Also there were 8 rooms in the department we were in and we live about 1 1/2 hours from the hospital, there were families there from Rochester NY, Illinois and North Carolina! I don't look forward to the 1 1/2 hour drive but the mom from Illinois had to drive 6 hours, just her and her son!

There was a little girl in there who looked to be of east Indian (from India) descent or in that region somewhere, anyway, she had beautiful thick, wavy black hair and after her electrodes were on they pulled her remaining hair into a pony tail. I kid you not! That pony tail was at least 3 inches thick! That child had the thickest hair I've ever seen on a kid! I'm just glad I'm not that mom picking glue out of that hair!

I hope the best for all the little ones there!