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!

We're home!

At the hospital Naomi was calm and stayed in bed. She only had 3 small seizures on Tuesday, the first day she had solid food on the diet. Then this morning when she woke up, or was woken up at 6 a.m for bloodwork, she didn't have any seizures at the hospital, even after a longish nap. Then we were discharged, and came home and she was excited up running around and I saw one about 12:09 then at 12:28 they started! She ended up seizing for about 15 minutes, poor thing. But the things that may have influenced that also are... she had a hard time falling asleep last night, she was asleep then they came in to check her vitals. Then she was woken up after only about 7 hours of sleep. So we'll see what a good night sleep at home does. She's up napping now.
I need to run to Walmart and get some special items for her to eat tonight and tomorrow. But we're thankful to be home!

Halloween 2007

This is from Halloween 2007. Yes they're store bought costumes. You can not deny my little duckling is awful cute! Anakin Skywalker is so authentic! Besides we needed to use at least one of the 3 light sabers in our house!This is a photo from last years Halloween. This is a friends son, he was 12 at the time and came up with the idea for the costume all by himself. Pretty creative kid! It's a Deep Sea diver if you can't tell. The big heavy boots.... not so conducive to trick or treating in a neighborhood where the houses are spread apart, better suited for an apartment or mall! HA!! He still made out good. He's a good kid. He didn't want candy, though people pushed it on him, instead he was trick or treating for UNICEF.

A lesson in optimism

I have a Great Aunt who lives nearby... if you know who I'm talking about you're at the edge of your seats waiting to see what she's said now!!! I was helping her pay some bills and one was from AARP, her membership was up for renewal. She'll be 83, I believe, this December. Anyhow, back to her mail.... When I told her AARP offered either one year or 3 year renewal she said "Lets think positive and go with the 3 year membership. But if I die, you write to them and get my money back!" I assured her I would and we'd bury her with her membership card clenched in her hand.
She's a hoot!

Eating like a Buckeye

Buckeye, in food ususally means a combination of chocolate and peanut butter. A local grocery store has Buckeye Cream Sticks in their bakery. In some place Cream Sticks are called Long Johns, but basically it's about 6 inches of rectangular dough (same dough they use to make doughnuts) fried then filled with cream. The Buckeye Cream Stick has peanut butter cream, chocolate icing and peanut butter chips on top. I've only ever ate one, they're supposed to be breakfast food but they are extra rich! Then there's the Buckeye, a peanut butter ball, partly dipped in chocolate just so some peanut butter peaks out the top and the candy resembles a real buckeye. But my favorite is Buckeye Pie. I've had it as is decribed below and I've also had it in a regular pie shell with peanut butter and powdered sugar mixed together until crumbly with no cream cheese and sprinkled over the baked shell then the chocolate pudding goes on top. So for those not from Ohio here's a recipe for......

BUCKEYE PIE
3/4 cup Peanut Butter
2 cups milk
1 large package of chocolate instant pudding
16 oz. cool whip
4 oz cream cheese, softened
1 cup powdered sugar
2 chocolate pie crust
Mix peanut butter and cream cheese together and then fold in 1/2 of the cool whip until well blended. Divide between the 2 pie crusts and spread out evenly.
Mix the milk and pudding mix for 2 minutes. Spread the pudding over the peanut butter mix then top with remaining Cool Whip.

Checking his list...

He's been a very good boy this year! We told Isaiah the country was having a rough time this year and he would have to scale down his Christmas list. Santa has to give extra to little boys who don't already have so much. As one of his friends said "Dude! I can't believe you have all this stuff".

I don't know if he took anything off the list or he just squished the list together, but here it is. Notice at the bottom right "specil camera" I'll show what that's for in another post, but the rest of the list is mainly Lego related. Bill went online earlier to check the prices of some of these. Some were $19.99, some in the $50 range but the Death Star it's $399.99!!!!!!!!!! No 9 year old, needs $400 worth of Legos! He had better get that thing entered into the Smithsonian or something! For some reason he wants 2 of some items. For example the "AT-TE Walker", oh sure only 2? How about 4? They're only $89.99 each! Why he wants 2 is beyond me. But I wouldn't doubt if one of his friends saw them also and Isaiah has offered to ask for 2 so when he comes over he'll have his own to play with. He is a very thoughtful boy and he won't be getting coal this year, but he won't be getting half this stuff either!

I don't exist

I was looking through the kids photo albums and apparently I abandoned them shortly after birth! There are very few photos of me and the kids simply because I'm the one who's holding the camera! Also since having the kids I tend to hide from the camera!

Here's a photo I found of my kids and me visiting Grandpa last year in the nursing home. He was 90 years old in this photo, with very little gray hair. He always said it was because he never let a woman cut his hair! At this point he'd been diagnosed with Alzheimer about 9 years or so.

Kool-Aid Playdough

Isaiah's preschool used to make this play dough and it's easy, smells good and is cheap. Of course Naomi can't play with any play dough until she learns not to stick everything in her mouth!

Kool-Aid Play dough
2-3 cups of flour
1/2 cup salt
3 Tablespoons oil
2 cups boiling water
2 envelopes of unsweetened Kool-Aid Drink Mix


Mix 2 cups of flour and dry ingredients together in a large bowl. Add water and oil. Stir until completely mixed, adding remaining flour until dough is no longer sticky. Store in an air tight container. Stays fresh for weeks.

It's begun

Yesterday the nutritionist called to see if I had any questions. She told me to go ahead and start low carbing it with Naomi. No sugary drinks, no starch, she can have some veggies, but no corn, potatoes, peas, no fruit. She said it's easier to tell me what to go ahead and give her.

We also went over the Sunday lunch and supper menu at the hospital so we would have everything picked out. She's having chicken breast,broccoli and carrots, and string cheese for lunch and for dinner roast turkey with green beans, tossed salad and sugar free jello. Because she's never had soda they don't want to start giving her the diet soda if at all possible so I'm just going to take some Free and Clear carbonated water from Walmart that Naomi loves. They'll start fasting her at midnight on Sunday and when her ketones are up they will slowly start giving her the Ketogenic eggnog shake to see how she tolerates it and if all goes well then start introducing the real meals. At least the electrodes from the EEG should be off by Monday afternoon so we can take her to the play room and to see the fish tank to keep her occupied.

One for the record books

I didn't want to jinx anything yesterday but Naomi woke up seizure free. She had 1 1/2 hours of therapy then fell asleep in the car on the way home. I put her to bed when we got home and she ended up sleeping about 2 hours and still woke up seizure free. She didn't have one single seizure all day. This is the first time since November 26, 2007. I don't know why, but Thursdays are always good days!
Of course she woke this morning and had about a 15 minute cluster, but they weren't too bad. She's eating breakfast now. The nutritionist from the Ketogenic program is supposed to call today.

Lady

More than anything Lady wants her own Webkinz! She is such a good dog. When Naomi bought home her Webkinz she looked at it longingly but kept her distance. That evening she found it laying in the floor, she sniffed it and scooted it a bit with her snout. My husband said "Lady, that's not yours" and she just went and laid on the couch and looked at it, and looked at it and looked. She's a good pet!

If we bought her a Webkinz, she would have it destroyed in a single night. She'd love it to death! She can gut a stuffed animal in record time! She does so out of love, but the end result is always the same, stuffing all over the living room!

She's a little nervous in this photo. There's a 2 year old circling her and there's a maraca laying on the floor. It's just a matter of time before the 2 year old picks up the maraca and tests how it sounds being hit on a poor little 13 pound dogs back. She has good reason to be nervous, that very same 2 year old, who will remain nameless (but there's only one in this household!) also bit the poor dog last night. That's not the way that's supposed to work!

Hospital stay

The weather man said there could be wet snow on the way Sunday or Monday! What a good time to be in the hospital! The hospital is in the "Snowbelt" so if it does snow, there's a good chance it'll hit there.
I talked to the director of the Keto team yesterday and she said we don't need to bring a thing. They'll send us home with the scale and everything. It's nice the scale we learn to prepare her meals on is the same scale we'll bring home.
Everyone is so nice there!
Naomi's Daddy is already planning on being far far away when they put the electrodes on her head for the 24 hour EEG. He just can't take it! She screams through the whole thing, even though it doesn't hurt one bit. He just can't stand for any of us to be unhappy and said he just feels so helpless. I don't mind it. It's for her own good and someone has to be there. I just need to remember to pack my 800mg Ibuprofen to relieve the major headache I'll have after she screams in my ear for 15 minutes! Maybe extra earplugs too!

Drowning in Democracy!

My email, my phone, my mailbox! They're all doing overtime thanks to election season! Is it like this everywhere or is it just because Ohio is so vital to both campaigns? I did see this Talking Moose and it make me laugh. The fact that Palin is "trigger happy" is not a negative around here. 85% of the local people who say they're voting Republican say it's because the Democrats want to take their guns away. Or at least 85% of those I've talked to. Pretty soon our newspaper will be filled with women and children with their first kill of the season or their first buck. Not me I don't like waiting in line in the meat dept. to buy hamburger let alone sit for a week in a tree stand in freezing weather just waiting for a deer to pass by.

Trick or Freeze 2008

This was one of our favorite options for a costume for Naomi this year. Although common sense took over, it's OHIO! This would be perfect for trick or treating in maybe Florida but not here. She'd have to wear a coat over the whole thing and some sort of thick tights at least! She'd be better off as an Eskimo!
She'll be on the Ketogenic diet this Halloween, but that's no big deal. I usually just push her along in the stroller while her brother runs door to door. People usually give him extra candy for his sister too. A local orthodontist will buy the kids candy for $1/pound up to 5 pounds, plus make an equal donation to the United Way and he ships all the candy he collects over seas to U.S. soldiers. So we may even make a little money with the uneaten candy.
Isaiah's favorite line is "Happy Halloween-er". It never gets old.... to him! Thankfully he's still into Star Wars, it's been about 4 years now, and he wants to recycle last years costume and be Anakin Skywalker again. In these tough economic times, that's a great thing!
My mom always used to make my costumes, it's just so much easier to go buy what they want! Plus I HATE to sew!
I cannot forget to mention that my mom gives out the regular size candy bars! She's got to be one of the most popular houses in her neighborhood! I was at her house last week and see she's got Hershey bars and Reese's cups and she's going to try to get some teddy grahams for the really little ones! Last year Isaiah made her a Spongebob "mask" out of a paper grocery bag and she sat there and wore that bag over her head all night. He's planning on making her something else this year, but I'm not sure what. He thinks Grammy really loves Pirates of the Carribean, when actually Grammy just really loves Johnny Depp!

Her First Webkinz

Here's Naomi with her new Webkinz, bought with some of the extra money from sending an OSU sweatshirt off to a Joe the Plumber fan in California! I took her to the hardware store to pick one out and she went straight for the squirrel! Which is something because that's one that was recommended by the fan's daughters! I think we'll call her Callie! Poor Callie already has a soaking wet nose as you can see from Naomi's sloppy toddler kisses!
OOOPS! Sorry Callie you're a CHIPMUNK not a squirrel!

Encouraging

I may be jumping the gun a little but I'm encouraged that the Ketogenic Diet may work for us. Yesterday after Naomi threw up twice, she was a little wore out. She fell back asleep for a little nap and woke up fine, but didn't want to eat much. I didn't push it, missing a meal won't hurt her. This morning she woke up and only had 4 little jerks in about 2 minutes.
Now she may take a nap and wake up and have her larger cluster but, for now she's good.

Do I really love autumn?

I think I love Autumn, the change to cooler weather, the leaves are changing colors and are beautiful. But then the kids start getting sick! Two weeks ago Isaiah had chest congestion, coughed all night. Then a week later Naomi got chest congestion and a little fever. Then last Tuesday Isaiah said his stomach hurt, yeah right, prove it. Then that night and all the next day... well I won't say what happened, we'll just say he had an intestinal bug. Today Naomi went to school this morning, fine and dandy. We went to Walmart and the hardware store, just fine. She took a nap, woke up crying then threw up all over my bed, twice. Yeah, I'm rethinking the whole Autumn is my favorite season thing!

She loves her books!

I left her alone for less than 5 minutes! I was just in the other room putting away clothes and she tore into her bookshelf! She does love her books, but what a mess. Notice the hand me down VHS tapes her brother gave her, he's way to big for Sesame St. or Richard Scary! I hope he doesn't notice the Star Wars book that got mixed in with her stuff!

Dress like Joe!

This has been eating at me for a while... I was born and raised in Ohio. I did leave for a few years and live out of state. But for most of my life I've been right here! I still don't know the answer to one question..... Why do so many people from Ohio seem to have a wardrobe made up mainly of Ohio State University apparel?????? Notice the recent over exposure of "Joe the Plumber" from Holland, Ohio. When the media was pursuing him, he had on an Ohio State sweatshirt. If you pass through our fair state you may begin to wonder... "is it a state law for every resident to own at least one OSU hoodie?" I think it is. I don't own one myself, but I'm wondering if that's not why my taxes are so high. Maybe there's some sort of "Hoodie" tax! I better go get one quick! That wouldn't be a problem THEY ARE EVERYWHERE!!!!!!! Seriously you can pick one up at a gas station! Which at least now I can afford to buy something other than gas. As of today at noon gas is about $2.58/gallon here! That feels like such a bargain!

Anyone recognize the above photo??? It's a necklace made out of Buckeyes, seriously! The school colors are red and gray (actually I think "scarlet" and gray is what they like it to be called). I'm telling you... it's out of hand!

Grandma and Grandpa

For some reason lately I've been thinking about my grandparents. My mom's parents. They were awesome. In fact that's who my daughter is named after. A friend of my mom's ran into one of my mom's cousin's after my daughter was born and told him "Linda's a grandma" and he thought she was talking about my son and she said "no Jenny had a girl, they named her Naomi". The friend said he broke down crying. He told her my Grandma was the best Aunt, she always made him feel loved and wanted. My grandma always used to tell us girls to "go to school so you can grow up to be president". What a great thing to tell GIRLS! Back then that didn't even seem possible. Instead of goodbye she would say "peace" and raise her fingers in the peace sign. I'll always remember she'd say "kill 'em with kindness" and I think that still works best when someone has wronged you. She died when I was about 12, but I have so many good memories of her.

My grandpa on the other hand just died in August of Alzheimer's/dementia. Until the end even though his mind was gone and he didn't remember who I was, when I'd take the kids to see him, he'd light up and come out of his fog. When we were little he'd get on the floor and play with all the grand kids. When he was in his 80's and I had my son he still got on the floor and played. I'm so happy my son has memories of his Great Grandpa. My grandpa was so comical. For one thing he called stuffed peppers "elephant turds". He had a saying I still don't understand "like duck sh*t through a tin horn". HUH? He had an uncanny ability to read people. When my cousin's son was little he'd say "he's a good kid, but something is just not right with him", he was right. When that boy was older they found out he had Aspberger's Syndrome (a type of autism). One year about 10 years ago we were at his house for Christmas and I handed him a present and on the tag I'd written To: Grandpa From: Santa, Grandpa gave me his sly little smile and said "I know that's a damn lie" It was so funny and so him.

Can I just say, my Grandpa was one good looking young man! My Grandma was built like Olive Oyl, who got those genes!???

Well, I could go on and on about them, there's just no words for how special they were not only to our family but to many others who's life they touched.

One good thing...

One good thing about a trip to a children's hospital is you realize just how little your worries are. Last February when Naomi had her first stay in the hospital I was feeling a little blue and walked down to Starbucks to get us some good coffee. Walking through the hospital I passed a little girl who'd obviously been burned in a fire. She looked like she had melted. She was walking but her face was very disfigured. I thought, that child is scarred for life. I wasn't thinking about her outward appearance, but the pain she'll go through when she grows and her skin won't stretch! Poor thing! I got back to the room and told my husband "our worries are few"
Also the hospital we go to is world famous and I'm thankful we're an hour car ride away! When you hear the people in the next room worried about catching their flight, or meet people who are from a whole different continent, not just country! Continent!. I just can't tell you how wonderful it is to have world class care in your back yard!

T.G.I.T.

Thank God it's Thursday.
For some reason Naomi's seizures always seem better on Thursdays. I notice because she also has therapy on Thursday mornings. This morning was no exception. She had 30 seizures this morning but they were spread out! She had about 10 in a minute or so, then about 3 minutes went by and she had 10 more. We came down stairs and she started again, this was maybe 20 minutes after the first ones and again, 10 in about 2 minutes. All fairly light. She went on to Therapy and first had physical therapy and it went well, she was keeping her hands down more. They said she's getting more comfortable with her balance and her sensory system is calming down (or something like). Then her occupational therapy went really well. She stayed on task and she interacted well. YIPEEE! I can't help but also note that this is also the first therapy session since going off the Topamax.

Sweetest Day

Sweetest Day is this Saturday and I believe it was even created here in Ohio, by a card company. This morning at 7 a.m my mom stopped by to stay with Isaiah while I took Naomi for a blood draw. This is a woman, who, when I was growing up put off all presents for Christmas or my birthday (July, conveniently just about 1/2 way to Christmas). So I should have been surprised when she had a little bag in her hand, but I'm not. See the grand kids are sooo much different. She bought Isaiah the new Indiana Jones movie that just came out. Oh, but she didn't just buy it for him. Get this, it's an early Sweetest Day present! I guess it's not spoiling him if you can come up with a "valid" reason for a present. Maybe I should complain, we're not Jewish, but didn't Rosh Hashanah just pass? And what about Columbus Day! For goodness sake! Do the make a holiday a day calendar or anything?

The Worst

This is the worst seizure day I can remember. She's been off the Topamax since Friday the 10th, and I don't know if some of this may be with drawl or what. That has got to be the worse thing about having a medicated child! You never know what to blame! Is it the medicine, is it lack of medicine is it a sickness??? She coughed on and off all last night, and anytime her sleep is disturbed she has a worse day. Today she had 100 seizures in 15 minutes. I called Cleveland to see how they felt about us getting a prescription for diastat since it'll be 13 twelve days before we go start the Ketogenic Diet. A nurse practitioner called me back within an hour (you got to love that!) and she said she thought it'd be a good idea and while we're at it lets do a blood draw to see what her Keppra levels are in case her dosage can be raised. I'm pretty sure she's at the max for the Keppra but checking her levels can't hurt. I checked Naomi's temp. after she was done seizing and it was 100.8 rectally and so I gave her Tylenol then at 10:30 ,exactly 4 hours after giving her Tylenol she started with more seizures. These were way lighter, most just a hiccup of a seize so I went ahead and gave her Motrin because it'll last longer. I thought her forehead seemed a little warmer anyhow. So far so good, she took a nap in the afternoon for an hour and woke with out seizures. I'm taking her to her pediatrician this afternoon to see if they can give her something for the cough so she can sleep better. Even during her hour nap the poor thing was woken about 3 times from coughing. There's no nasal drainage it's 100% in her chest. I had the same crud about 2 weeks ago, still have gunk in my throat.
Let me clarify the 100 seizures in 15 minutes. She starts out slow with her seizures. They start out very light, maybe just a facial expression change. That part lasted about 3 minutes then they get a little stronger, sometimes her eye waters and you can hear her bowels grumble (it's odd but she's gassy a lot after a seizure) so for about 7 minutes they were almost rhythmic, every few seconds apart. Then about the 10 minute mark they tend to start to slow down and for the next 5 minutes I think, "okay, that was it, ooppps no there's another" then more time goes by I think she's done and so on. Usually when she's done she'll start drinking from her cup, want off my lap or something. Yesterday even she thought she was done, (yesterday was bad too about 90 in 13 minutes) but I knew she wasn't done and kept hold of her so she wouldn't fall.
I'll just be happy when

I was an only child

I was an only child. Contrary to the popular belief of only children.... I wouldn't say I was spoiled, my mom wasn't a "shopper" so I yearned for Nike's and Levi's and I never did get a Snoopy snow cone machine! I did get Uncle Wriggly one year, and remember loving the game. My mom said there was too much to it and threw it away. I never forgot that! Then, at the age of about 30 when my mom and I took my son to a toy store, there it was! Uncle Wriggly! I grabbed it and ran to show my mom! She bought it for me!

Another part of being an only child, and being a girl is having a father who loved and doted on me and took me everywhere with him. I never knew until I had a son just how bad my dad had wanted a son! Not that he didn't want me and love me, but when I had Isaiah a love that had laid dormant for almost 25 years was unleashed! They are "best pals" . Isaiah adores my dad, would spend every day with him. They have matching blue housecoats for goodness sake! Last weekend my parents took Isaiah to a Chinese restaurant and at the end of the meal when my mom opened her fortune cookie it read something to the effect of " You are emotionally strong and sensitive" Isaiah reached over and took the paper from her and said "uh... Grammy, I think you got the wrong one, that was supposed to be Papaw's" He loves my mom too, but he and Papaw are tight! Mom opened another cookie and it read "now's the time to finish tasks" mom told Isaiah that meant she needed to take him home right away!

Naomi's pretty much ours, my parents love her and would love to have her stay the night too, but her seizures and medication schedule are, I'm sure ,a little scary for them and I don't think I could let her go anyhow. Isaiah was over 2 before I let him spend the night away from home and there wasn't a thing in the world wrong with him!

Internet Danger

There's a danger in researching your child's diagnoses on the internet. When Naomi was first diagnosed with Myoclonic Astatic (myoclonic meaning muscular and Astatic meaning she falls) I looked it up on the internet. Everytime I typed that in I'd get Lennox-Gastaut http://www.epilepsyfoundation.org/answerplace/Medical/seizures/syndromes/lennoxgastaut.cfm
When I really got sickly worried over it, I called and talked to the clinical nurse, and she made me feel instantly relieve. She said "OH!! NO NO NO NO NO!!! It's not Lennox-Gastaut! It's good to research but make sure you check what you've found with an informed person!" She was cheerful about it and made me feel, in a good way, like, you silly thing, relax! The next thing I constantly ran across was Doose Syndrome. http://www.epilepsyfoundation.org/infants/myoclonicepilepsy.html
Well, I started looking at this right before an appointment with Dr. T. So, I asked her about it and she said "It's not Doose, I actually worked with Dr. Doose, and Naomi has symptoms of a few syndromes but doesn't have any one syndrome" When your Dr. tells you she worked with someone who has a syndrome named for them, it makes you feel like you're in incredible hands!
So to wrap this up, it's good to be informed about your child's diagnoses, but it'd be good to set a time limit as to how long you'll let yourself get sucked into the internet looking up information. Don't get scared by what you find and if you do, call and talk to your neurologists office and get an informed opionion.

All done for 2 days now

The 10th was the first day with NO Topamax. So far so good. She does have a little rash on her upper chest, may just be heat because she just woke, doesn't look menacing. I'd think the rash that can come with Topamax would have hit when she was at a high dose if it was going to come at all. Other than that things are about normal. At least no worse than when she was on Topamax and better in some ways. Today she woke at 6 a.m and didn't have one seizure. That's the first time she's woke from an over night sleep without any seizures in recent memory. She did lay down for a nap at 9:20 and woke at 10:40 and of course had a 10 minute cluster of 54 seizures. But at least we had a good morning.

Give me a break Angelina

I just read an article about Angelina Jolie, apparently a magazine is publishing some private photos Brad took of her where she's apparently breastfeeding and you can see part of her breast and a little hand clutching it. Sorry, big deal! Most people who've breastfed, especially those who've had to do it in public at some point could care less about her little piece of boob that the media seems to think is a big deal. (FYI it was illegal to breast feed in West Virginia until 2005, my dad and hubby's home state).
To paraphrase, Angelina's just so lucky because Brad finds her body even more beautiful after all it's been through. I'm sorry if I don't give him a big old pat on the back for that! I'm sure she has issues she just had twins but give me a break! She's not even a little over weight. If she'd ballooned up to oh, I don't know 120 lbs (being sarcastic) maybe then I'd think a little more of how Brad still loves her body.
Now my husband deserves a big old pat on the back, heck he should get the Congressional Medal of honor! He loves me more today than the day we got married and tells me he wouldn't know what to do if something happened to our marriage. My boobs are bigger, yes, but that's not a good thing! I was already a large C then! They're also lower! My first baby was 10lbs. 7 oz and 22 1/2 inches long and had a big old head. I gained 100 lbs with him, lost 40 before I even left the hospital, lots of water. I have so many stretch marks I probably only have about 4 inches across my back that have no marks. My butts gotten wider and flatter. Also just to add insult to injury, come late October, since I'll be in jeans all the time, I'll probably only shave my legs about once a week, that's right. Who's gonna know?? Besides we get cold winters, I need the extra warmth! I'll have to keep the gas furnace turned down so we can afford the heating bill. So it's like free insulation! As my cousin's husband told her his "investment has sure grown!" In these economic times, with our mutual funds below purchase price, he should be glad he's invested so much in me and his investment has surely grown!

Sesame fanatics

I must say ,as I sit here watching Sesame Street, that in this house we are Sesame fanatics! I loved Sesame Street as a kid. If you've never read THE GREAT COOKIE THIEF you are missing out! I had a whole collection of Sesame St. books. After we had Isaiah he started watching Sesame Street and I can thank them for him knowing his ABC's before he was 2, not just the song he recognized them individually too. He also could count to 15 before 2, which has a lot to do with Sesame St. too. Of course we didn't just park him in front of the T.V. but I think this program added a lot to his learning. Now Naomi watches it, and Isaiah will admit that even though other 9 year olds think it's for babies in his words "you gotta admit, Elmo's pretty cute!" Naomi has a very low attention span but will pay attention to Sesame St. What is it!? Is it the colors? The kids voices? All the movement? Both my kids and my nephew loved the 25 yr Celebration video, I mean LOVED! We have tons of DVD's, videos and books! They just never get old. A new favorite of mine is a segment called Meal or No Meal. Isaiah like the Indiana Jones spoof of Texas Telly. I tell ya! They are some creative folks at PBS and if I ever win the lotto we may have to make a hefty donation to our local station because plenty of times they've been my nanny!

A first

We live very close to what I guess is characterized as a state park, but it's a farm. A working farm with animals, crops even beehives. I've gone there since I was a child. A once famous writer once lived there and his famous friends Humphrey Bogart and Lauren Bacall were married there under the floating staircase. (http://www.malabarfarm.org/ ) Every year they have the Heritage Days outdoor festival, we don't go EVERY year. It is a very nice festival though. They shoot off a Civil War cannon, muzzle loader riffles you can throw a hatchet. There's people dressed like native Americans (not hokey either), also like pioneers (those poor women on hot days) There are teepee's set up the kids can go in and they make butter and other stuff. My son loves the model train display. I love the apple butter they make out on the open fire! They even have fresh kettle corn and sarsaparilla. Can't beat that! But what I love is the horse rides. It's not the old pony hooked to a rail and they go round and round. These are well cared for and loved horses saddled up and lead around on a path. My husband had to walk with Naomi because, well she's little! But also she got so excited when the horse moved she waved her hands, thus letting go of the saddle horn. Her brother has grown out of this! God forbid someone see him on a horse, or worse yet HOLDING A BALLOON!! OH THE HORROR! Besides the horses they had live music from a couple old men playing banjos, fiddles etc.. Bluegrass type music. Naomi couldn't be still! Her Grandpa Johnny out in Washington would be so proud! He used to play before Arthur Ritis came to stay. He even had bluegrass festivals at his house.

what a nice boy

This blog is to be mostly about Naomi and her epilepsy but I must mention her brother. Isaiah is 7 years older than Naomi. He's so nice to her. This morning I put a hooded sweatshirt on her so we could walk him to school and he just kept saying "awwww, mom, look at her, she's SO cute in that isn't she, she's so cute! Look at her" He's good at keeping her happy when we're shopping and yesterday in the car he leaned over towards her and she grabbed his head and was so excited, she just loves him. Her speech is delayed and yesterday she took him a book and I told him to say the word book because she could say it and we were trying to get her to say book. Well he really worked and worked trying to get her to say it, but she's so excited he's interacting with her she missed the point!
I did move a lot of the things she could climb on ,out of the living room. My husband was watching her Saturday morning and trying to clean up the kitchen when he heard something in the dining room and there she was walking around on top of the dining room table. You've really got to keep an eye on her, she's super active!

Almost done with Topamax

Today we're going to 15mg in a.m. and p.m. So she should be done with this in the next couple days. She's still having daily seizures, but still no worse than when she was at the highest dosage. She's had a really good day, then she'll have a bad day. There's no rhyme nor reason to it! When she was on Topamax at higher levels she was less vocal, and when she'd get frustrated she'd bite her hands, HARD! She didn't seem to feel it. The Dr. said it's possible she didn't . People report numbness in hands and feet. Also one parent we met in the PMU said that their son was on it and put his hand on a hot stove and didn't feel a thing. She also had loose stool (like peanut butter). Yesterday was the first really formed b.m. I can remember in a long time. I also used to see little black specks in her b.m. I'm not seeing that anymore. Other than that I can't really think of anything else. I'll probably think of something later!

Because when your up your up and when......

Well she's up all right!!!! Up and climbing on Everything!!!!!!!!!! She climbed onto her Leap Frog table stood straight up on it, then tried to step into her toy box. Then..... she tipped over her little red coupe and climbed up on it and fell butt first into the car. Then..... she climbed up on the little stool where she looks out the window, climbed over the arm of the recliner directly onto the dog. She climbs onto the couch and tries to run from one end to the other. She is a climbing fool. This weekend I'm taking it all out of the living room. She can have it little by little. All she cares about are her books anyhow. Maybe if I put them where she doesn't have ready access she'll learn to ask for them. If I haven't had a heart attack by them!

you got to pay the piper

After a pretty good day yesterday with no real cluster of seizures and fewer than 20 all day, today we had to pay the piper. She had a cluster of 50 when she woke, then seemed tired and around 10 a.m. had another cluster of 30 then fell asleep about 10:30 for a 2 hour nap and woke and had another cluster of about 30. So for now we're over 100 for the day. She did go down another 15 mg. this morning but that shouldn't have affected the 1st cluster. There is just no rhyme or reason to her seizures.

Odd day

We're still at 30 mg of Topamax twice a day but this morning when she woke up I waited and nothing happened then finally I saw one. Over the next hour I saw a total of 3. She had therapy this a.m and when we got to the office she had 1 then her Physical Therapist saw 4 in the half hour they were together. Her OT and ST therapist saw nothing. She took a long nap when we got home and I figured when she woke up then she'd have a big cluster, but NO, just 1 little seizure. She's been up an hour now and ate lunch and still she's fine. She's wanting to be near me and seems calmer also.

Depakote Spr

My daughter took Depakote from about Feb 1- May 22. It never worked for us. Our Dr. said if she was still in Europe it would have been her 1st choice but here they like to go with Keppra first because it has much less side effects than other meds. Dr T also likes to use Depakote Sprinkles with the younger kids because it goes into their bloodstream at a much steadier rate (that's how I understood it anyway). Though I know they can give Depakote (not the sprinkles) intravenously to start. Sort of a jump start.
It seemed like the higher the dosage the worse the seizures got. At first it seemed like maybe they worked a little and might have made her focus a little more but every time her dosage went up eventually the seizures would get stronger. She also started looking out of the corner of her eyes like she couldn't focus. I took her to the eye Dr. and he said it could be the medicine. It must have been the meds because she stopped after she got off Depakote. It made her tremble, but she trembled along with her seizures and no other time, like a really really strong cold chill. She may have had more spells where she got angry or frustrated. She never had a seizure free day. As soon as we started decreasing the Depakote the seizures seemed better, we were introducing Topamax then too, so I'd hope her seizures would seem better she had 3 meds in her system. She didn't pick up any new words during this time, just seemed to be at a stand still. She picked up on physical things, climbing stairs etc... but no verbal. Also when she would seizure on Depakote I could watch her eyes dilate rapidly and when they'd get to a certain point BOOM there's go a seizure. On other meds I don't notice that or at least it's not so noticeable.
I also want to note again that when Dr T prescribed Depakote she also prescribed Carnitor ( http://www.carnitor.com/ ) or Levocarnitine. It's a nutritional supplement that helps protect the liver. It comes in tablet form you dissolve in water I believe but we got an oral solution. Both have a "fishy" smell. You could smell a dirty diaper from a mile away!!! But I'm sorry to say, once she went off Carnitor, her dirty diapers didn't magically start smelling like roses! I will add here a housekeeping tip: activated charcoal that they use in aquariums and you can buy in the pet dept. at Walmart, works 10,000 times better than baking soda at taking care of diaper pails!

Topamax wean about 2 weeks

Well we're down to 30 mg in a.m. 30 mg in p.m. So far so good. It seems like when we go down a dose, well really just the p.m dose, we may see more seizures than we'd been seen. But nothing worse than when she was on Topamax at full dose. So I don't think there's any trouble with the wean. On the up side she is so much more vocal, smiling all the time and into everything. She's trying to say more words. She just seems like a happier kid.