Sunday, November 30, 2008
It's a wrap
Man this turned depressing! I wasn't headed in this direction when I started!
Thursday, November 27, 2008
What more could there be???
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!!!!
Wednesday, November 26, 2008
Out to dinner
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 !!
Tuesday, November 25, 2008
Flu season
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.
Monday, November 24, 2008
Naomi
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!
Sunday, November 23, 2008
That ain't me
Thursday, November 20, 2008
Kath & Kim
Glad I got that out of my system!
Her lips are sealed!
Thanksgiving
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.
Monday, November 17, 2008
Support Group
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.
Sunday, November 16, 2008
A Good Day!!
Saturday, November 15, 2008
The King
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!!
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!
Friday, November 14, 2008
Tweaking
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!!!
Thursday, November 13, 2008
2 week labs
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!
Monday, November 10, 2008
Diet
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.
Saturday, November 8, 2008
Chocolate butter sucker, Keto style
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.
Friday, November 7, 2008
Curiosity
Bargain hunting
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.
Wednesday, November 5, 2008
Ketones
A new era
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!
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!
Tuesday, November 4, 2008
GONE AGAIN!
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.
Monday, November 3, 2008
OOOPS
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
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!
Sunday, November 2, 2008
Bowel Habits
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!
Saturday, November 1, 2008
My new internet friend... Ketocalc!
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!!!!
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!
Blog Archive
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2008
(101)
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November
(28)
- It's a wrap
- What more could there be???
- Out to dinner
- Flu season
- Naomi
- That ain't me
- Kath & Kim
- Her lips are sealed!
- Thanksgiving
- Support Group
- A Good Day!!
- The King
- That's why!!
- Tweaking
- 2 week labs
- Diet
- Chocolate butter sucker, Keto style
- Curiosity
- Bargain hunting
- Ketones
- A new era
- I got out to vote!
- GONE AGAIN!
- OOOPS
- Foods on the diet
- Bowel Habits
- My new internet friend... Ketocalc!
- Did Sissy Break her head!!!!
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November
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