I'm a Book Worm Too!

I finally started reading again!
It's been a while and I thought... I'll post what I'm reading in a gadget on my blog!
Well here's the problem with that. When I start reading it's hard for me to stop! I can read a book a day or maybe 2 days. I got the book The Hour I First Believed by Wally Lamb on Friday, December 19th and thought, "Man this is a big book! Can I finish it before I have to return it in 2 weeks?!"
Isaiah's eyes got HUGE when he saw it, I believe it's like 750+ pages. When he saw me come out of the library he said "what's that mom?"
I told him "Something for you to read while your off on holiday break"
His voice cracked as he said "I CAN'T READ ALL THAT!"
Well I think it took me all of 3 days to get through that book! I tell you , I have a sickness! I HATED to read in school! I guess because the teachers always want you to read off a list and even though I like fiction, nonfiction and love biographies I never found anything that interested me on their lists.
Another problem of mine is when I find an author I like I have to read every book of theirs I can get my hands on. A few years ago it was John Jakes. I read so many of his books! Also I've been stuck on Maeve Binchy, Sophie Kinsella, Jonis Agee, Sarah Strohmeyer, Jodi Picoult, books from Ophrah's list and Anne Rivers Siddon.
My book Gadget has gotten outdated pretty quick! I read 2 books over the weekend. I read Sea Glass by Anita Shreve and Remember Me by Sophie Kinsella. I really liked Anita Shreve's book, well I liked them both but I've run out of Sophie Kinsella books to read! So now I'm going backto the library to check out a couple more Anita Shreve books.
I should start reading only dead authors then at least I'd know what I was up against.
I tried to read Faulkner, his book As I Lay Dying was on Oprah's book club list and I may have missed something. It was the stupidest thing I've read in a long time, I do not see the genius in it It's a story I could have heard from any of my hillbilly relatives!
My favorite author, the author I just can not wait until he puts out a new book is David Sedaris! He's in nonfiction, all his books are stories from his life, but are so unbelievable hilarious! I love a book that makes me laugh out loud! If you've never read his books or even heard of him search for him on Youtube. There's videos of people reading his books and once I saw a video of him doing a reading on Letterman.
One of the best biographies I ever read was A Boy from Plains by Jimmy Carter, I'm not just saying this because I met his brother Billy when I was young (like 4!). I also read Barack Obama's book Dreams from My Father, which was lucky since now I can dispute my mother in law when she says things like "he's not American because Hawaii wasn't a state when he was born". Also Charles Barkley's book I May Be Wrong.... But I doubt it, is so funny, though I guess that's not really a biography.
Anyway, if anyone has read anything good let me know. I'm always on the look out for a good book!

Bilingual??

On Christmas Day I talked to my friend Carol in North Carolina. Then that night I woke up and was just laying in bed thinking. At some point I realized my thoughts had a southern accent! I don't know why but it was crazy! I don't know if it was talking to Carol that bought it out or what!
When we moved back to Ohio from North Carolina I had a very thick western Carolina accent. You know, where it's not "pen" it's "pey-en". It's not a "shopping cart" it's a "buggy"(heavy on the UH in bUggy).
A local factory was shut down without notice and they filed bankruptcy and the people thought they'd be with out a job for Christmas. Well a North Carolina based company came in and bought them. Gave them all $1500 shopping cards just to win the trust of the former employees, isn't that nice. Well last night I got to thinking, I should go down and see about getting a job there! I could tell them I'm bilingual and would be able to answer phone calls from their main offices in N.C. and actually understand what was being said to me. Also I know enough to talk slow so they can understand me!
When we moved back to Ohio there was a message on our answering machine. I remember Bill and I sitting around the machine and playing the message over and over saying "why is she talking so fast?". I can't remember what the message was about but it took us a bunch of tries to try to understand what that fast talking northerner was saying! She wasn't talking any different than anyone else up here it was just so strange to hear! I think that's when I finally admitted I did have an accent!
Speaking of accents, since we got a Christmas card from Fawn Isaiah has asked me some questions about Canada. First he wondered if when they talk do they say things like "Nice car, Aay". I don't know where he got that! Probably some cartoon with a Mountie in it. Then last night I was watching Comedy Central and Jeff Dunham and Bubba J came on. Isaiah saw Bubba J and said "Why's he talking like that? Is he from Canada?" Sorry Canadians!!! Obviously we have not let Isaiah spend nearly enough time with his Daddy's family or he'd know exactly where Bubba J is from! HA!! Kidding!!! Actually some of Bubba J's stories sound like my own father's family!
(note: the clip on Youtube is NOT the same as was on T.V. last night. I didn't let Isaiah watch the whole thing and there was no cussing on the t.v. version!)

How The Diet is going

Well we've been on the diet about 8 weeks now and Naomi is still not staying in Ketosis. Her ketones are very low in the morning and don't get up to the range we want them until around 3 p.m. They fall again before bedtime. I've been keeping the dietitian updated on how it's going but can't get any answers or instructions on what to do next. With the holidays and the fact that the dietitian is only at main campus 3 days a week, it's been a pain to get answers. I emailed her this morning and she emailed me right back but I've never gotten an answer as what to do next! Do I just wait it out? Does something need to be changed? It's very aggravating. Naomi gained over 2 pounds since the start of the diet. They aren't supposed to gain ANY weight. So something needs fixed!
Her seizures have been cut in 1/2 since we met with the dietitian Dec 5th and changed her to a 3.5:1 ratio (3.5g fat to 1g carbs+protein). She's still having clusters when she wakes and then one here and there. We call the one's here and there her "stragglers". They're usually very mild and she just falls to her bottom, they're over in less than a second.
It's just aggravating to have been on the diet 2 months now and she's still not staying in ketosis! Hopefully we'll get some answers soon!

Dashing

Isaiah had his choir concert Thursday. On the way home he said "I look quite dashing don't I?"

We made all over him! OH YES YES YOU DO! My parents made all over him how HANDSOME!

Then we got home and I wanted to run some of the kids old coats to the neighbor lady. She's dropping them off at a shelter today. Anyhow.... Isaiah walked to her house with me and she wasn't home. We left the coats because her purse and keys were on the table and her car in the drive. So I called her cell. She was at another neighbors, having a cookie swap. I told her what Isaiah had said when we left her house .... "Too bad Georgia is gonna miss my dashingness!" So she immediately left her cookie swap, Grandma instincts kicking in!, and came to see him. She walked in and said "OH, my goodness! You are Dashing! I'm so glad I didn't miss this!" then had him turn a full circle to model his "dashingness". He had the BIGGEST grin on his face. He was SOOOOO proud! It was too funny!

You can't tell it, and I didn't notice until after the concert but... there's a price tag hanging from the back of the tie! A big one!

The concert went really well! God Bless the choir teacher and her nerves of steel! All those 4th graders and their squeaky recorders! She HAS to be medicated! HA!!
Some poor family had a toddler who threw up right before the curtain was pulled! Not ours! Ours peed through her diaper onto her Daddy's coat, again! I luckily had a spare pair of pants. No spare jacket though!We were only gone an hour and changed her RIGHT before we left!

Other than that uneventful!

Tools of the Trade

Say over 4 days Naomi is going to have #11 four times. I get a stack of these 4 oz cups write #11 16 grams of applesauce on 4 of them. I also check to see if any of her other meals have applesauce so I can measure them all up at once. Then I make a big stack of cups that need applesauce and each of them is already labeled with what they need so I can do 4 days of applesauce in no time. I do that with all the remaining ingredients of the meals. Usually I label all the cups first according to meal number, then separate them according to what goes in them, chicken, hot dog, cheese, 1o % fruit, Group B Veg. etc....






I also do her cream in batches. I make up a weeks worth of stickers for her sippy cups writing what number meal and what goes in the cup. Then I do about 6 cups at a time.






Here's some cute little silicone scrapers, a whisk that fits right into her cups perfectly and an egg separator I found. Aren't they adorable!!!!! Plus the scrapers fit right into the 4oz cups then right into Naomi's mouth so she gets every last bite! I put my regular size scraper and whisk along side so you can tell how small they are.



And here's what it all looks like tucked away on the Keto-shelf of the fridge.
I'm not very well stocked here! Only 2 meals. All the 16 grams are for #11 which she eats for her 1st and usually last meal of the day. I usually have way more whipping cream stocked up too! I was just at Walmart yesterday and I don't think I grabbed any! That's unusual!

Planning Naomi's meals

I've been working on this for a while! I got started then decided I needed to compact it a little! There's a lot to fit in! Fawn did a good job of showing how she weighs out her daughter's meals and what they look like. I've been trying to decide how to show how I plan and get together Naomi's meals. First of all I print out a weekly calendar.

Naomi's meals on Ketocalc are numbered so I simply write #11, #18, #13 or what ever. Maybe with a note to remind myself exactly what #18 is! #18-Eggnog.

Then I got the idea of printing out the meals on an index card from another Keto-mom but that was long before we even started the diet and I forget exactly who it was! I'm pretty sure it was Stephanie Precourt though! I printed them out and then bought some of these nifty magnetic photo holder's and put the index cards in there. I keep them all on the left side of the fridge then move over the day's menu to the right side then move them back as I've fed her those meals.

Right now (subject to change at any moment! Especially since I've just recently gotten all new cards made up!!!) Naomi's on a 3.5:1 ratio and gets 1050 calories a day split evenly into 4 meals. So she eats every 4 hours. Usually 6 a.m., 10 a.m., 2 p.m. and again at 6 p.m. She is not on fluid restriction. She guzzles down Free America carbonated flavored water from Walmart! Usually at least a whole 34 oz bottle a day plus her cream 4 times a day which I've been adding water to so she ends up with at least 64 oz. daily. She'd probably drink more if I let her and the skin on her feet is still dry as a bone!

Enough for now, next tools of the trade!

The Free Ride is over!

My husband was off work for a long while. His last work day was the Wednesday before Thanksgiving and he just went back to work Monday! This is how Naomi spent that whole time! Usually her little chin was nestled right in the curve of his neck. Her little hand patting Daddy's back. I think she forgot she had legs! If she was down on the floor and her Daddy walked through the room she immediately threw her arms up to be lifted. If he was standing watching T.V. she was circling him letting him know, all he had to do was reach down and pluck her up. When he was trying to fix a lamp, up on his knees leaning on the back of the recliner fixing the switch, she was trying to climb up, grabbing hold of his pants pockets to try and pull herself up on the recliner too. She was pathetically attached to him! I don't know how many times he didn't realize she'd walked right up behind him and he knocked her down. He was up on a step ladder cleaning the ceiling fan and when he stepped down she was so close he somehow stepped right on her.

Now he's back to work. She's loving on me when she wakes up, unless we come down to find him still in the kitchen and then she abandons me. When he has to leave she comes back to me, but when he walks through the door in the evening, she's right there, waiting at the gate with her arms up. Her and the dog, I don't know which one loves him more!

Santa's out of his bag!

On the way to school today (about a 2 minute drive), Isaiah had time to say
"Mom, some kids at school said there's no Santa. They said your parents just sneak the presents under the tree when you're sleeping. Is that true?"
Remember he's in 4th grade! We're surprised he's believed this long! I was about to pay his friend to tell him the truth. The gifts just keep getting more and more expensive and when your child can argue back that "Santa just has his Elves make them" and you have to argue back that some toys are trademarked and Santa can't just make them.
He said "if you're Santa where's your beard?" then laughed at his little joke.
Then before he got out of the car he said
"What about the Easter Bunny?"
I said: That's allllllll me too buddy. Sorry!

My ornament

If our tree had nothing but the Christmas Tampon and this Sylvester on it, it'd be fine with me. That's kind of what I had in mind for this year! HA! Didn't happen!

I can SOOOOOO remember going into the Hallmark when it was on South St. here in town and purchasing this ornament! My mom took me and they had a whole wall of ornaments, just like today's Hallmark's. We sadly no longer have a Hallmark in our town, I miss it. They have such nice gifts, and I could read cards till the cows come home!

The scary part is, on the bottom of Sylvester it says 1977! That makes me 3 when I bought him! Yet my memory of buying him is vivid!

I have lots of odd memories like that shoved in my head! Memories of being places for no special reason yet having a photo of the moment stuck in my head!

One of my favorite Christmas memories was going to Enderle's Foodline IGA with my Grandma and we came around the end of an aisle and there was this older man there. For some reason, in my mind he looked like JR Ewing from "Dallas". Anyway, there was a fruit display at the end of the aisle and mistletoe hanging. My Grandma lets go of the cart (I actually call it a "buggy" now after living in North Carolina for a time!) goes over and grabs "JR" and pulls him under the mistletoe and lays a big old smooch straight on his lips. He starts laughing and Grandma turns and smiles at me and tells me not to mention it to Grandpa! She knew as soon as I saw Grandpa I'd blurt out the story! Grandpa acted like he couldn't believe his ears as he winked over my head at Grandma.

The Christmas Tampon

Isaiah made this little beauty when he was in preschool! I believe it was supposed to be a sheep or something. Ann was the director of the preschool and she ended up getting sick the day they made these. She apparently was the only one who knew exactly what it was supposed to be! The teacher took directions over the phone.... but somehow I don't think she got it quite right.

Whatever it was supposed to be, it's always been The Christmas Tampon in our home. And will forever be known as such.

Sorry Santa!!

Sorry we missed you Santa. We go every year to see Santa at Possum Run's Christmas open house. Santa was there on Saturday from 10-4 but Naomi was running a slight fever and the roads were a MESS! Possum Run is kind of out in the middle of no where. Back a long and winding road. I love it there, but the road to get there is one of those that your stomach flies up to your throat as you go over hill after hill, and it feel like the tires are coming off the road. (They actually do if you go fast enough, yeah... I was 16 once!)
We did get a Christmas tree. It sure makes the house smell good! I wanted a small tree. Usually we all go out but it was so nasty out I just sent Bill out yesterday to get one. I had him cut a foot off the bottom of the tree he got. It was almost to the ceiling. I don't know why I want a little tree this year but I do! This one's still really round.
An old family friend puts up a HUGE tree every year! I mean, it's a struggle to get it in the house then she has to saw off the limbs to get it out! I have a picture of Isaiah in front of her tree from about 2 years ago, I'll have to find it and post a photo.

FREE AT LAST

FINALLY! FINALLY! FINALLY! I've made my way out!!!!
Naomi's 2 year molars have finally poked their heads through!
I knew they'd get here some time! They are 2 year molars! She's 32 months old today! They're a little late!!!!!! This explains the slight fever she had Saturday! The extra seizure activity lately! Maybe even the redness in her ear a couple weeks ago. That was my first thought when the Dr. said her right ear was a little red, her brother always got ear infections and high fevers with his bigger teeth. Good luck finding a Dr. that will definitively tell you that they're related though! I didn't mention the teething to the Dr., she had a bad cold and he's waving antibiotics at me, Yeah! Give me some of that for my Ketokid! It's pretty much my only hope! Otherwise I really try to avoid antibiotics. I bet Isaiah's only been on them 3 or 4 times in his 9 1/2 years.
Naomi's gonna hate me for a while! I have to give her acetominophen in the form of a suppository, she doesn't enjoy it much! It works though!
Good thing I just bought an extra box of latex gloves and a whole new box of the suppositories!

My Baby Rocks!

What do you do when your child is up at 5:30 a.m., you're trying to keep her quiet because the rest of the house is sleeping? You turn on the t.v. , but there's no cartoons on. Nothing with any music to get her going. You're just too tired to entertain her yourself. So go make some coffee, try to get the crust out of your eyes and then... YEAH at least MTV is playing music at this hour (only at this hour anymore!). So this morning at Naomi was rocking out with Katey Perry and her song "Hot-N-Cold" and also to Jason Miraz and his song "I'm Yours". It let me sit for a while and enjoy my coffee, and gave Naomi something to rock side to side to. She's a dancing fool!

The Day After

Today Naomi woke at 5:30. She's been waking up pretty good. No big seizures. But, yesterday she only got to nap in the car on the way back and forth from the hospital. She got a decent nap going up, maybe 40 minutes. Then maybe only 20 minutes on the way back. So of course this morning she had a bunch of seizures when she got up. The biggest part of them were over by 10 minutes, but they kept coming, sometimes not more than a strong swallow, for another 10 minutes. Then she fell back asleep for an hour. Woke fine, just 2 small little jerks. Then was sleepy again by 10 so we laid back down. She woke up fine this time, but she's having one little, almost dizzy spell , every once in a while.
Also before her nap I thought she felt warm and she had a temp of 100, so I gave her acetaminophen and she fell asleep gnawing her finger... Those molars again???? Will they ever come? Her gums look "full" but no white showing.
So to keep her happy we're watching Signing Time, over and over. Isaiah must have gotten tired of the DVD we were watching because he switched it out for another Signing Time.
I can't blame him!
This is her first day on 3.5:1 also so I'm sure her little body is trying to adjust. Her little mouth sure doesn't mind the extra cream! The kid just about chips her tooth trying to get the cup in her mouth! I've read to give the fat first, but if I give her the cream, she'll say to heck with everything else!

6 week check up

As of Monday Naomi will have been on the diet for 6 weeks. We've been checking her urine ketones and they've been low but weren't sure if the blood work would match up. It did. Her ketones were only 2.?? when we had blood drawn on Wednesday. Also she was a bit dry, HUH? She gets 4 meals a day, she drinks 7 oz. with each meal. Then she sucks down a 34 oz bottle of Free America carbonated water from Walmart, everyday. Still she acts thirsty! I doubt kidney stones will be a problem!
We were at the Dr's for almost 2 hours and I changed her diaper 3 times. Then she soaked her diaper on the way home! (She soaked through at the hospital too, while her Daddy was holding her! teee heee hee).
We had to meet first with the dietitian and then the neurologist. The Dr was an hour late and something must have gotten messed up because she thought we were early! Usually she's right on time, so I'll give her a break.
We go back in 6 weeks, we'll have to meet with 2 neurologists then, plus the dietitian.
We better pack pillows and sleeping bags!

Better Day

After a terrible day, blechhhh, blechhhh, let me get the bitter taste of yesterday out of my mouth!!!! Yesterday was terrible, she had a series of 3 clusters that started off light and not scary, to a when will this end, I'm about to give emergency meds seizure. Today she had blood work in the morning and fell asleep on the way home and woke up fine. So that kind of held her nap off. I tried to get her to lay down about 2 but she wouldn't have it. It was almost time to eat again. So I went ahead got her up and fed her then let her be happy and expel some energy for a while. Then checked her ketones just to see where they were, about 40. Then I put her, an myself, down for a nap. Hoping that since her ketones were higher at this time of day than they would have been if she'd have napped at 1, as usual, that she'd wake up with less seizures. I also gave her acetaminophen for extra ooomph. She slept from 3-4:30. Woke up.......... JUST FINE! Nothing, NADA! First time in?????????? So let me celebrate this good day, who knows what tomorrow brings.
But it does make me upset that her ketones aren't up all the time and that her diet needs to be tweaked. It shows me that all this added seizure activity could possibly be stopped if her ketones would level out.
Meet with Ketoteam on Friday, wish her luck!

A place where everyone knows her name....

Think the theme from t.v. show Cheers... "Making your way in the world today takes everything you've got. Taking a break from all your worries , sure would help a lot. Wouldn't you like to get away? Sometimes you wanna go.. Where everybody knows your name, and their always glad you came......"
Well today Naomi went someplace everybody knows her name. The receptionist says "My she's getting big!". That place is..... the lab. She went for yet more bloodwork today. This time they only needed to draw 4 vials of blood, lucky girl! Once it was 10, seriously!
This time, as was the case last time, they had a hard time finding a vein. She had a wiggly vein that they finally tapped into after inserting needle and moving it until they hit it. If you heard a high pitched scream around 9:30 EST this morning, that was her.
Another office member even came and shut the door. But the waiting room still heard her. I let her walk out where her Daddy was waiting. She'd stopped crying, but when she saw him crouched with his arms open to pick her up, she cried again and did this funny little side to side "I am TICKED" walk/run to his waiting arms.
After they put her band aid on they asked the question..... Any parent who has taken their kid to anything stressful to the child knows what question I mean
"DO YOU WANT A STICKER?"
They handed her a Fairytopia sticker which she looked at, then glared at them, then promptly threw the sticker to the floor. The guy who stuck her said "I guess we know what she thinks of us!" She was his first stick of the day. I'd have to guess afterward he headed straight outside for a smoke. He said his heart was pounding.
When I was little I had a sticker book, several actually. I would collect stickers and put them in my books, maybe a precursor to scrap booking. It's no wonder kids no longer have sticker books. What a memory.. this Fairytopia sticker is from the time I had my blood drawn, this Barbie sticker is from 2 weeks later when I had my blood drawn again. This Sponge bob sticker is from the dentist, after my flu shot I got this nice Winnie the Pooh.... etc.
Can you imagine waking from , say a hysterectomy and the nurse says "which sticker would you like? High School Musical or Santa?" Oh that would make it all better!

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!

The Bag Lady

For the 2nd year, Isaiah designed a "costume" for his Grammy. Last year it was a bag decorated with Spongebob and the words "kick me" written on the back! At least this year he made her holes to breath and see through, he left that detail out last year.
I think this bag was decorated with a pumpkin. He put a Vote Democrat sticker on it that mom peeled off. I'm not sure why..... see the big circular badge? It's a big Obama '08 pin! Maybe she didn't notice, I see she forgot to take her work name badge off too!

Kit Kat's, Hershey Bars and Reese's cups... full size like I mentioned in an earlier post. I'll have to ask today which was most popular, she also bought animal crackers for the really little babies this year.

Her 1st Halloween Keto-style

We took Naomi along for trick or treat but she didn't actually go door to door. She was most excited about seeing all the kids running around in costumes. Her Daddy carried her most of the time. Some people offered candy to her but we simply said "no thank you she's on a special diet". Easy peasy!

She loved just being out and about. We went trick or treat in the village I grew up in, where my parents still live. She sure looked cute in her cheerleader costume! She's a Buckeye! She's GOT to be an Ohio State University Cheerleader at least once during her childhood!

The most polite trick or treater ever!

This is how it goes when Isaiah trick or treats

Isaiah: Trick or Treat

the person gives him candy

Isaiah : Happy Halloween

Isaiah walks 2 ft to the next person

Isaiah: Trick or Treat

more candy given

Isaiah: Happy Halloween

He makes sure to say Happy Halloween to everyone in thanks for his candy.

One place had a lot of kids and after they gave him candy he walked away, then turned, came back two steps and made sure he said "Thank You"

I don't know what I did to this kid to make him so paranoid that he has to make sure he thanks everyone but I'm proud of him. He is a nice boy! and He's proud to be nice!

One unique thing about Isaiah, even though there was still abou 15 minutes left of trick or treat, is bag was full and he said "you know I think that's enough, I've got plenty of candy". No one could ever call him greedy!

Day 2....

Monday was the day she had to fast so no breakfast, no lunch.

After the lab work and such we watched a Signing Time video, oh I don't know, like 50 times!!! If you haven't seen these they're good. I would recommend them for kids with speech problems. I picked up on the signing after watching it once and she loves the music, the kids and the way they show the sign then the written word, I can see how it could teach some kids to read.
The neurologist came in and said the EEG didn't tell them anything new, still generalized seizures. Since she was tolerating the EEG fine they were gonna leave it on as long as it didn't seem to bother her. They checked her ketones anytime she wet her diaper. I had to put cotton balls in her diapers then they'd take them and get urine out of the cotton balls. We unhooked her from the monitor and walked her around with the EEG still stuck to her head just to help her forget she hadn't ate but generally she did pretty good with the fasting. About 2 pm her ketones were up enough we could start giving her the Ketogenic eggnog. She loved, loved , loved it! She only got about 3 oz at a time and she had to sip it and make it last about 20 minutes and she got another 3 oz every 2 hours. It was a 1/3 strength eggnog to start with. She had 3 of the 1/3 strength then wen to 2/3 strength. She was supposed to get 3 of those but she fell asleep after the 2nd so in the morning she could start on the real food.
They introduce the eggnog slowly because they have an empty stomach and lots of kids vomit the drink back up. I think Naomi totally could have just guzzled it! I did tell the nurse if the EEG electrodes dried out (they generally refill them every shift) I didn't want them messed with. When they come in to inject the stuff into the electrodes she screams and gets all upset and I didn't want her to get upset and that make her vomit.

Day 3.... FOOOOOOOOOODDDDD!!!!!

They bought her breakfast meal to us on Monday night so we'd be able to feed her when she woke up and not wait for trays to be brought around.
Of course they woke her again early for lab work so she ate just after 6. You know the little cups you get a side of dressing in ???? About 2 oz??? That's what her meal came in. One cup of cheese and another of fruit, then a cup of cream with oil in it. She ate it all down.
About 10a.m. the EEG tech came in and took off the electrodes and I got Naomi in the shower to condition her hair and try to comb out some of the glue. Did you hear the screaming????
Then it was a full day with the therapy dog, the football players and all that!
The day passed pretty quickly and she ate all her meals like a champ!
This child will eat anything put in front of her. For her lunch she had grilled chicken, fruit, vegetable and about a tablespoon of mayo. She's never had mayo before and I wasn't sure she'd eat it so I thought I'd mix it with the chicken. Bill said "just go ahead and see if she'll eat the mayo straight off the spoon". So I did and she ate it UP!!!!!
I think it's her Southern heritage that enabled that!
They had an occupational therapist and a speech therapist come for an evaluation. I guess they weren't aware she already had those services at home. They were all very nice though. The occupational therapist got her out of bed and wanted to see her walk and she went with them and she walked tip toed down the hall and had her legs bent funny, which she usually doesn't' do. I thought maybe it was the slippers or just having been in bed so long. Last night I realised what it was!!! She was constipated! Her last bowel movement was Friday and here it was Tuesday!! She always holds her bowels in the hospital. Poor thing!

How it went...

day 1- got to the hospital just after 11 a.m. The neurologist doing rounds in the monitoring unit (yet another brilliant and kind Dr.) came around with a resident and just made sure we knew what was going to happen and what they expected us to gain from the stay. They weighed her took her vitals and everything was fine.

About noon they got the electrodes on her head and wrapped gauze around her head to keep her from messing with it (photo to be uploaded soon!). While I held her down for this, her dad ran back to the car to get our luggage, he can't take the crying. After she got all that mess on and they gave her lunch. They decided to just go low carb for her hospital stay and boy she sure ate everything up!!
After lunch the neurology resident came in and Naomi had already given up her "sunny disposition" and she gave anyone who walked in the room a very skeptical look. The resident was just doing the usual tests to see if she's weaker on one side etc... then he got out a pen light and shined it in her eyes and then tried to get her to follow it and held it off to the side to check her peripheral vision. The whole time she just stared him down! She was NOT taking her eyes off him!!! Very distrustful! Later she was sitting in the bed and Bill was holding a carrot on a fork off to the side of her and without turning her head or her eyes reached out with her fingers and plucked it off and shoved it in her mouth. Nothing wrong with her peripheral!!!
She ate diner about 5 and we held off on her jello cup until 7 so she'd have a snack before the fasting started. She slept all right, but would just wake up and open her eyes in the bed then go back to sleep. Then between 5-6 a.m. here came the woman from the lab to take blood. Then here came the nurse to prick her finger to check blood sugar.
I told Bill she's got to think "this is the worst hotel EVER!!!!"

The Highlights!

One day child life services from the hospital bought into our room a nice young medical student who played guitar and sang a few songs. It was very nice. It was also the day Naomi was fasting so she wasn't the best audience. He did win her heart when he gave her a little egg to shake, she loves that. Though got upset when I kept having to say "NO MOUTH". It looked too much like food I guess.
The third day we were there was filled with activity. A therapy dog made the rounds and Naomi got a lick, then she bumped back into him and we saved him from a big, wet open mouth toddler kiss. He was a big white dog with hair like a Chow or Pomeranian, but he was snow white. Beautiful.
Then 3 members of the Cleveland Browns made the rounds and signed a penant for her. We took her up to the play area and the team was up there too. It looked busy to me so I told my husband "she'll never get in there, I'll run and get us some lunch". Apparently about the time I left the team mascot came out and Naomi giggled, and put her hand to his paw and cracked up laughing. Then he started goofing off and running in place and pointing at her and she just kept giving him a precious shy smile.
The final highlight is we got out of there! YIPEEE! Also the very nice man who volunteers and we see him often, stopped us on our way to the parking garage and said "are you being discharged today". I told him yes, I thought, don't tell me he's gonna call back and make sure she's allowed to leave! I wanted out. He said "do you have your discharge paper" I had a hand full of papers. He showed me the one he was talking about and told me to give that to the parking attendant and I wouldn't be charged today. Well I assumed just for today, Wednesday. Sounded good to me, it's like $12/day! So I did what he said and the woman wrote our name down and just said "okay, thanks you" and lifted the gate and we left without paying for any of the days we were parked there. Parking is at such a premium we had at least 4 cars with drivers foaming at the mouth wanting our spot when we pulled out!