Time Well Wasted

It's been a while!

2010-10-31T10:10:00.002-04:00

Well, lots going on, but since Naomi killed my old computer by spitting water on the keyboard back in July I just can't get back to all those old things that were once in the favorites and so easily accessed! Plus, I'm hopelessly addicted to Facebook and Farmville!
I'm doing fine, lots of times it feels like I'm just putting little fires out all over the place!
Naomi has been off Zonegran, the med we tried starting in January 1010, since July. Once again we only saw improvement coming off the drug. More vocal, just more "there" and interactive. She is slowly making progress. There are tiny things she does that seem monumental. She has been doing itinerant services for the last two years and this year we've incorporated it into the classroom setting a bit. So once a week she goes to preschool for 1 1/2 hours. She sees PT first then her itinerant teacher takes her in a classroom and she's with her for an hour. Also during that time she is seen by OT and Speech in the classroom. She loves being in the class with kids. My only concern is it messes with her naps, which are always changing! She only sleeps about 1/2 hour to an hour but she needs that. So that's the only reason I'm hesitant to send her more. We tried to get a chair for her and it was too expensive but then I saw an almost identical one for her that our insurance should cover made by Rifton so we're still waiting to hear about that. It's getting the company that orders then to push it through that's the hold up I think. She still gets therapy once a week at the local pediatric therapy place she's went for over 2 years now. She loves riding the bike during PT.
Isaiah struggled at the beginning of 6th grade. He was doing his work but it wasn't making it to the right place so he was getting 0's and late assignments. I didn't know the school has to do an evaluation on your child for a learning disability if you request it. I called the school and left a voice mail for the principal on a Friday morning and when I hadn't heard anything back on Monday afternoon I went and mailed a certified letter requesting testing, and got a call on Tuesday. I took Isaiah to Cleveland Clinic for a hearing evaluation and it's fine. I've also been talking to a professor at a local university who teaches LD teachers about the neurology of learning. Isaiah shows a lot of signs of Central Auditory Processing Disorder. Basically his ears hears fine but his brain doesn't process what he hears correctly. He's also a very visual learner and has poor auditory memory. So that's hurting him a lot. There may be some attention issues too. But I'm getting everything checked I can before I take him to the pediatric developmental neurologist in December. We went to Kent State University to the Pathology and Audiology department to have his tested for the CAPD but I won't know the results until next month when we go back for 2 more shorter tests. It's just frustrating. He's a very bright kid, but doesn't learn like the schools teach. He's still getting B's and C's, and that's after the rough start so we'll see what the next 9 weeks bring.
My Dad is still kicking and he retired October 30 after working at the same place close to 40 years. He is a Vietnam veteran and the VA has given him full disability because his cancer may be connected to the use of agent orange exposure while in Vietnam. The cancer is still there. Still stage 4, but it's not doing anything. He says he feels good. My mom went in to have a swollen part of her thyroid taken out to be biopsied and it ended up that the swollen part was fine but there was a smaller area next to it they hadn't detected and it shows positive for papillary cancer. Which is a good one to have. One dose of radioactive iodine should take care of it. With little to no side effects.
My kitchen is finished! Bill worked hard this summer and got that done. Now, as expected, little things here and there are happening. Small roof leaf, new gutter it just seems like you fix one thing and something else happens! Friday I called the gas company because once in a while we smell natural gas. The meter is out front and when I went out to get the mail I smelled it pretty strong. So I called and they came right out. It was an underground leak so they had a crew come out Friday late and fix that and put a new meter in. Well then they detected a small leak in the house. Told me to get a plumber in and call a 1-800 number and they'd come out Saturday to fix it. So I got a plumber in here on SATURDAY, you know that cost extra! I hated to have Naomi in here with no heat or hot water. So he fixed what they said leaked then we called to have them come back out. They said they may not be here til Monday and I was LIVID. Someone did end up coming back out but the thing is, you need the plumber and the gas company here at the same time incase there is a leak and he can tighten it up. Well, there was still a leak, but they couldn't find where it was. They sprayed all the joints and nothing. So they wouldn't turn the gas back on. The plumber came back out and we just had him redo everything he hadn't done already. So he was here about 8 hours total yesterday. He put a gauge on the meter and it should tell if there is a leak. Then I'll call back the gas company and get them back. Though now they will charge me $60 for coming. It's just seemed to snowball. It's cold in the house but no hot water is the worse!
Well, I guess I better save this. It's been a long time and this is about all I can think of to update :)

And So It Goes

2010-05-26T08:41:00.002-04:00

I have watched this countless times over the last two days.
It depresses the heck out of me, but I love it!
It's not the reference to a lost love, it's more than that. It's loss in general I guess.
There's a part where he says " Everytime I've held a rose it seems I've only felt the thorns". That makes me think of kids like Naomi. There's so many thorns some days I don't stop and enjoy the rose.
There's so much worry. Stupid stuff like meals, bowel habits, medicine weans (after a month I'm sure we're out of the woods), her falling. The stress of her screaming when I change a diaper, comb her hair, put her helmet on. Sometimes I am so sick of the screaming, there's no reason for it. But I understand she can't communicate and that's frustrating. But still, the screaming feels a bit like torture some days.
So here's what's new or not so new
We dropped her Zonegran to 25 mg in a.m. on April 28 and so far so good. She still takes 50 mg at night. That dosage didn't change. I'm supposed to call anytime now and see about dropping another 25 mg. But we are going to a graduation out of state and I really don't want to be in the middle of a med wean while away from home. One good thing is taking away just 25 mg also rid her of the "can't sweat" side effect. I've had her out in 80+ degree weather for over 20 minutes and there was no sign of over heating.
Naomi's stroller is not here yet. It is litterally on a slow boat from China :) When we ordered it they were manufacturing the strollers in China and have since moved it to USA. Which is a nice change! But it's taking FOREVER. 3 weeks ago they said it should be here in 2 weeks. But no word yet! I can't even remember how long it's been since it was ordered. I know I thought we'd have it by the end of April and that didn't happen.
School is almost out! I am so happy! Isaiah has 2 test tomorrow and I wish that was it, but I know he started a new chapter in Social Studies on Monday, so I'd think they'd test on that at some point. They are running out of time!

Fashion Babies

2010-05-08T09:20:00.002-04:00

I heard something on TV yesterday that really irritated me.
We all know Sandra Bullock adopted a baby. Well, she's being criticized for adopting a black baby. Some say she just did it because it's fashionable. Seriously! People are so stupid! Can they not just be happy that a baby found a good home? And "Fashionable"???? Is that really how they want to put it?
Immediately what sprang into my mind was Paris Hilton and her stupid tiny dogs tucked under her arm. Then Brittney Spears and every one on TV seemed to have a little dog, the tinier the better, tucked in their arm, in their purse etc....
But a baby?! As a fashion accessory? Come on!
I was telling all this to Bill last night and laughed and asked "When will a baby in a helmet be fashionable? Cause I got one of those!". I'm not into shoes or jewelry or any of that so that's my only hope of ever being fashionable!
Come on Angie and Brad! Strap some hockey helmets on a kid or two and help my cause along!

Farewell

2010-04-28T14:21:00.004-04:00

The after effects of EEG glue (when the Daddy can't take anymore screaming and says "that's enough")

We said good bye to Dr. Tuxhorn yesterday. She said "I'll carry you all with me in my heart" and I just about lost it! I am such a baby. I swear I am still mourning the loss of her today! I woke with a terrible head ache and was extremely nauseous. I know it was from the stress of yesterday and from crying and trying hard not to cry!

First Naomi had her EEG done. We saw the woman who has twice put leads on her head in the monitoring unit. She recognized Naomi and said "Weren't you just in the PMU?" I laughed and said October 2008! She said she recognized Naomi's face but was terrible with names. I told her I can't even imagine she remembered her at all! Naomi warmed right up to her, so she must not remember her! LOL!

We had a really good experienced person put the leads on. Which is nice when your child screams through the whole thing! Eventually she gave up the fight. No more twisting, kicking, scratching etc..... but kept on screaming.

They caught 2 seizures on the EEG. The paperwork says "atypical absence seizure". She stiffens when she has them. A tonic sort of motion. Her whole body doesn't stiffen, mostly her legs and she may slow her breathing, but never stops breathing. They're quick too! She had one in the exam room and I saw it coming and before I could say "there's one" it was over. Tuxhorn said the EEG shows improvement. Instead of spikes every so often the only spikes were when she actually was having a seizure. So good news, I guess. Or we'll take it as good news!

Tuxhorn feels Naomi would be better served staying at Cleveland Clinic. She doesn't know anything about the ketogenic program at Rainbow Babies. Doesn't even know if they have one! So we are set to see Dr. Lachhwani in July. We've seen him before, as I think I mentioned. He did rounds in the PMU when Naomi was starting the ketogenic diet.

One great thing has come of this! We get Martin back as clinical nurse! WHOOOOOPPPEEEEEE!! He's Dr. Lachhwani's nurse and when Tuxhorn told me that I was so happy! I told her the nurse is more important than the Dr. We converse more with the nurse and the nurse gets things done and relays messages for us. So I'm thrilled to have him back. I think he may have OCD about his job! But that's what I want!!

Tuxhorn said we can go ahead and take away one pill from Naomi's Zonegran dosage. She said give it a month and if everything goes smooth call Martin and see about going down again on dosage. We had a couple 80+ degree days and I noticed that Naomi was warm to the touch and had more seizures than usual. Probably because she can't sweat on the Zonegran, so I really want that gone!

Dr. Tuxhorn mentioned Banzel and Vimpat, neither FDA approved for children. She said if she thought either of them would surely help rid Naomi of seizures she'd push us to try them. She doesn't feel that way so is fine with us weaning off meds. Nothing has made a dent in her seizures and some have even made them worse.

Naomi got her Vitamin D level tested. So yes, that was 3 blood draws in one week. Although this guy was a pediatric phlebotomist and that makes a huge difference!

New Neurologist

2010-04-23T11:58:00.002-04:00

You know I LOVE our neurologist Dr. Tuxhorn. But she's leaving Cleveland Clinic! Boo Hooo!

But word is she's going to be the new head of pediatric epilepsy at Rainbow Babies Children's hospital. Which is on Euclid Ave. in Cleveland just like Cleveland Clinic!

When I first found out she was leaving I was just really hoping she'd stay in the U.S. and not go back to Europe. So to think she's just going down the road is great news.

I still don't know if she'll take patients at her new position. Rainbow Babies is part of University Hospital, which I think is part of Case Western University. BEAUTIFUL campus by the way!

Naomi has a routine EEG on Tuesday then sees Dr. Tuxhorn later in the day, so we'll no more then.

I really hope we can just move with her! We've seen her since November 2007 and I really don't want to switch. Just in case I've already decided we will see Dr. Deepak Lachhwani if we HAVE to stay at Cleveland. He did rounds once when she stayed in patient at the pediatric monitoring unit and had a very nice bedside manner. So I'd be comfortable with him. But still really hate to think of loosing Tuxhorn.

Pet Peeve

2010-03-16T11:25:00.002-04:00

I have a new pet peeve. When people put their relationship status as "it's complicated".

One I know for sure is actually "unhappily married". Another is "unhappily divorced". Both should be single!

Why do they put anything? You can leave it blank.

Another funny is what people put under "interested in". I guess that could be taken any way. Some put friendship, men, women or both. I wonder if those who put men and women actually know what that sounds like.

I've learned to hide people on Facebook and I love that.
I wish real life was like Facebook. Where you can just delete the connection if they offend you or you just don't like what they say.

Kindness

2010-03-11T12:58:00.002-05:00

Isaiah got an invitation to a birthday party yesterday. He's been talking about it. Saying that this boy was having a party and he was invited. We kept telling him we'd need something in writing. You know how kids are! This kids parents could have been planning a family only party and here he goes to school and invites everyone! But yesterday he brought home the invite. We had thoughts of going away for Spring break but nothing has been written in stone yet. This boys party was 2 days into Spring break. I told my parents that any plans they may have thought of would have to work around this. Isaiah really wanted to go and this boy is a little odd. I think he gets picked on. I know even Isaiah has lost patience with him before because he's sort of immature and whines a lot, that sort of thing. But Isaiah did bet him a birthday card and some Pokemon cards and wrapped them up himself and gave to the kid. I told mom I thought Isaiah better go because with the timing of the party other kids may be out of town, no to mention he's not Mr. Popularity.

My mom said Isaiah told them one weekend that at lunch the kids were picking on another little boy and saying he had cooties. He'd try to sit down and the kids would block him and say "no you have cooties". Until Isaiah spoke up and told him he could come and sit by him. I guess the teacher said something to him, praising him for being kind to that boy when no one else would.

He's such a good soul!

March Already?!

2010-03-10T15:39:00.003-05:00

Naomi turned 4 on March 7!

Well, haven't been on here in a long time!

February was pretty uneventful. Mostly because we were snowed in! It was the snowiest month ever! The first really big wave came February 5 and there is still spots of snow out on the ground now! The kids used all 5 of the snow days that are incorporated into the school schedule. They also had several 2 hour delays. Naomi missed lots of therapy. She goes on Tuesday and Thursdays and that seemed to be the popular day for a new storm systems to blow through. Usually we get all our really bad weather from the north. This year I think every bad storm we got came up from Texas! It was weird! The last one to go through went past us and didn't drop much snow. Then it went out to the coast turned around and came back and dumped snow on us! The weirdest thing ever!

Naomi has a new therapist. The local hospital where she goes for therapy cut benefits on 400 of their employees! Her OT was caught up in that and had to quit pediatric therapy so she could pick up extra hours doing therapy at nursing homes where she'll make more money and be able to afford to pay the COBRA insurance. Her husband was recently laid off, she has a 6 year old, a 6 month old that they adopted in Aug. after fertility treatments and going through 3 different adoption agencies. Now, she's pregnant, due around the babies 1st birthday! So being with out insurance is not an option! I really hope they find a break somewhere!

Naomi turned 4! Time has just flown by! We all went to church and there were tons of kids there. That tickled her, she likes watching them. I just see a lot of kids 1/2 her age twice as developmentally advanced. UGH. But then I look at her and can't even imagine her at a normal development! There is a lot of little quirky things we'd have missed if she was "normal". She's growing like crazy! She's definitely had another growth spurt. I put lighter weight pants on her that used to fit fine. Now they look more like capris!

Since starting on Zonegran or cutting back calories she's evened out on her seizures. She has about 30 a day and most of them are very light. Some just look like she got light headed for a split second and it's passed. Last week I was feeding her 11G of pineapple at her 2nd meal of the day. I noticed her seizures seemed to increase some so I took the pineapple away after a few days and sure enough! They went back to how they had been before! I then realized when she seemed to be going downhill in January she was eating pineapple then too! So, is it Zonegran? calorie reduction? or having no pineapple?! So frustrating!
She's been faithfully wearing her helmet. She doesn't mind wearing it but screams when putting it on or taking it off! Oh well, scream away little girl! It's saved her head more than once already!

Well, maybe I better stop. I may think of something else and squeeze another post out of it!

To the Clinic

2010-02-23T17:02:00.003-05:00

We went to Cleveland's Cole Eye Institute today to have Naomi's eye's looked at. Last time we went it was because she was acting like she couldn't focus. That ended up being Depakote. Once we weaned her off the Depakote that behavior stopped.
But when she was on absolutely no medication she was flinching. She would close her eyes and turn her head quickly like something was flying at her. So I figured, lets rule out vision!
Two years ago when she had her last eye exam she was supposed to see Dr. Traboulsi but he was called out of the country for some reason. She was seen by a resident and another Dr. came in and double checked and she was fine then too.
So today was our first visit with Dr. Elias Traboulsi . In true Cleveland Clinic fashion, he was wonderful! Again we were first seen by another Dr. and he thought every thing was fine but Traboulsi came in and wanted to double check.

I'm so used to holding Naomi down. I held her in my lap and when he was trying to look in her eyes she was screaming. I held her chin and at the same time reached up and pulled down her eye lid with my thumb, with out him asking me to do so. He moved to the other eye and I did the same. He stood up looked at me and said "you're hired!". That made me and Bill laugh.

After he told us everything was indeed fine he asked me if they'd found an underlying reason for her seizures. Was it mitochondrial? I said no we'd had testing done. He asked me if something had been done and I said I wasn't sure but she see's Dr. Parikh and he has ran all the metabolic and mitochondrial test. He said the test he wondered about would be called a metabolic panel. I remembered that one, and assured him it had been done. He said he's a geneticist. I love how their Dr's double check everything.

Who thinks they'll go to the eye Dr. and get a suggestion about neurology?

He said the flinching could be part of her seizures. I definitely think it's something neurological or maybe a better way to say it is it's part of the sensory issues she has.
I think it's interesting when she was taking no drugs she was doing this. At the same time she was seeming to be picking up more things. Then we started the Zonegran and lots of things seemed to slow. So maybe it slowed something in this too? Who knows. It's all a mystery!

I do know that other times when she's come off of meds I have seen her look at things she views every day like she has never seen them before in her life!
I'm ready to stop the Zonegran, her seizures are predictable right now. But there's a few things about the meds I hate. One just being getting her to swallow them! It's a fight!

Well that was my day. Hope everyone else did something other than go to the eye Dr.

You just never know....

2010-02-14T15:48:00.002-05:00

Today in church Isaiah raised his hands and asked for prayers for this little girl and her family. He's such a thoughtful little guy. We talked about it with him and he's never mentioned it. But apparently he's been thinking about it.

Valentines From the Nursing Home

2010-02-10T13:51:00.003-05:00

When I opened up a card from a family friend I almost cried to see these two Valentines inside!
These are to my kids from Jeanette, "the Crayon Lady".
Jeanette was a friend of my grandparents. She had a stroke in 2008 and had to move into a nursing home. She remembered it was my birthday July of 2009 and called to tell me Happy Birthday from her room. She was moved to another facility and no one told us and she called my parents to make sure we all knew.
She has ALWAYS sent us cards. She sends cards to me and all my cousins, plus our kids and probably most of our spouses. Bill has always said it's a shame Jeanette remembers his birthday every year, but his mother often forgets. It's not just birthdays though. It's every holiday under the sun!
My cousin and her daughter just went and visited Jeanette last week and her hands were really crippled up and knowing that makes these even more special!
Jeanette worked at a factory that made crayons, markers and water colors. She has supplied us since I was young with more of all of that than you can imagine.
Before she went to the nursing home I stopped with Naomi to see her at her house. Out she comes with 2 grocery bags full of crayons and such. I said "do you want me to choose which ones we need". "OH NO," she said "they're ALL for you!"
Jeanette is such a blessing to our family!

Making Contact

2010-02-05T06:23:00.002-05:00

The other day I was going through my Dad's old photo album from Vietnam. There's lots of old family photos in there too. People sent him their school photos when he was over seas and he'd stuck them in there. There were some I had no idea who they were. One was a man in a military uniform. At first I thought it must be someone he served with and the guys name was on the back. So I called my Dad and he said that it was someone who lived below his grandparents and his family and Dad's family had all gone to church together.

I got on the Internet and found out that this man's father had just died in January 2010 and it gave the town where this fellow lived, in Texas. It also gave the residence of his siblings. I looked him up and got an address, but no phone was listed. So I looked up his fathers residence in North Carolina where 2 of his sisters lived and there was a phone number. I gave the number to my Dad and he called it Tuesday night. The sister that answered remembered Dad and said "do you know how long it's been since I've seen you!" . It's probably been almost 40 years. She gave my Dad her brother's phone number in Texas and when Dad called he got an answering machine. He didn't leave a message.

So Wednesday night my parents were home watching the T.V. when the phone rang and Dad answered it. It was the man in Texas. He said his sister had called and told him Dad was looking for him and he was tickled to death! He and Dad talked for a while. Both finding out the other had cancer. The man told dad to go to the Veteran's Administration and get an I.D. and tell them about his cancer. The man in TX retired from the military and he said the agent orange used in Vietnam is known to cause cancer and the number one type they're seeing is prostrate cancer.

The guy got Dad's address and is going to write him a letter.

This fellow also had a sister. They called her "Cookie" and according to my aunt Cookie was BAD. She always got my aunt in trouble and she'd do wrong and my aunt would get whipped for it. My grandpa whipped them with an old miner's belt too! Which is a regular belt with lots of little belts and buckles all the way around it, ouch! My Aunt says she'd going to look up Cookie and go beat her up for all the stuff she did as a child. I found Cookie! She only lives about an hour from us, so she better watch her back. There's 5ft and 90 lbs of trouble coming her way!

UGH

2010-02-04T10:35:00.004-05:00

Well Naomi had therapy today. She had 4 seizures while she was with the Speech and PT who see her together on Tuesdays. She was tired today, and hopefully will take a nap soon! Her appointment on Tuesday is 8:30, bright eyed and bushy tailed! Not so much!
Four is about what she usually has for that first 1/2 hour then she goes to OT and is better, having 0-1. Today however after one of the seizures the speech therapist noticed that her smile was lopsided for a brief time afterwards. I've heard of Todd's paralysis but we've never seen it in Naomi. I'm thinking that's exactly what this was. So now I'm watching her closely and after her seizures making sure that everything is where it should be.

I'm also marking this as strike 2 against Zonegran. Strike one being that she is less vocal since being on it. I'll be talking to the nurse soon and will be sure to mention my grievances in order to try to get Naomi back off meds sooner rather than later.

Dancing at home

2010-02-01T09:57:00.003-05:00

Naomi, at home dancing and "singing" to The Song off of the Alvin and the Chipmunks Squeakquel CD. She loves it. At the beginning she squints her eyes a few times. She been doing that since December. I don't think it's seizure related so we're going to the eye Dr. at Cleveland Clinic's Cole Eye Institute later this month for a check up.
It's always something!

Zonegran

2010-01-28T08:31:00.002-05:00

Tuesday Naomi started 50 mg of Zonegran twice a day. This is the dosage we've been working up to. She's only been on the meds less than 3 weeks, but we've seen nothing. We lowered her calories the same time we started her on the Zonegran so who knows what is what at this point! She isn't falling all the time anymore. Some of her seizures look like dizzy spells, but we've seen this on the diet so it's not enough to make me want to continue with the meds one minute more than I have to. She gets agitated very easy. I tried to pick her up and move her yesterday and she laid down on the floor and had a full on fit! Also, she had been babbling constantly. Ball, bear, making up her own little sentences of "bee bee bee bee ball bee". It felt like she was trying to communicate, but that's gone. We're back to "yea-yah" for about everything. That is really frustrating, because now I wonder if the babbling will come back when the meds are gone or will she have to start fresh with that!

We lowered her calories as I said, so maybe that's helping some. The number of seizures she's having are about the same. They are more spread out and lighter in intensity though, well not all but most. There is no rhyme or reason. Sometimes she'll have stronger seizures in the a.m. and then they lighten up. Sometimes they're lighter in the a.m. then in the evening they get stronger.

She's not wanting to eat at least 1 meal a day. She eventually does eat it, but not in a timely manner. She's been in the other room working on an eggnog drink for breakfast about an hour now. Yesterday it was her 3rd meal she didn't want. Zonegran has a side effect of loss of appetite but we've seen this with the diet also. I just hate having 2 things going on at once.

The Zonegran comes in tablets that I can pull apart and sprinkle the contents in food and give to her. That doesn't work with her though. It's easier just to get her to swallow the whole pill, then you know she's gotten it all. She can spit it out and I can put it right back in her mouth until she swallows it. I've put the whole pill in some sugar free jello and she was taking that well for a while. Now she screams and gags on the jello, so I just let her spit it out and as long as the pills stay in there we're good!

Monday she'll have blood drawn to check her diet related blood work and also the Zonegran level. So hopefully we can talk to the Dr's office and know if we've gotten her to a theraputic level and it's not working, so lets back off!

Good Buy

2010-01-18T18:42:00.005-05:00

Have you ever bought something for your little kid and your big kid loves it too?
Why we didn't buy one of these earlier I have NO idea. It has been a life saver. You'd think she'd hate it, but she loves it. We take her out then she turns around and walks right back to it and points in! So what ever, silly child!
I am buying an extension so she'll have even more room. When she seizures in this thing she falls against the sides and just sort of slides down safely. But tomorrow, like it or not, we're having a strap put on her helmet.
P.S. see the end of my new couch? The chair is in the right corner, you can't see it so well.

Dear Diary

2010-01-18T12:07:00.003-05:00

I just set up an online diary. Why when I have a blog?
Well, because I signed up on www.my-diary.org and got my own online diary so I can keep track of when I talk to the neurologist office. That is the only thing that will go in there. I'm using it as a log.
When I call them.
When they call me back.
I figure if the nurse doesn't seem to be keeping as good of records as I think she should. I will also keep some records so I know exactly when I called and what was said.
I'm thinking by the way the nurse replied when I said hello, and the quick response I got from her, that our neurologist has had a bit of a talk with her. She said she tried to call me several times last week. On Thursday but she got a busy signal. Well, I told her, we have call waiting. The only possible way that she could have called and gotten a busy signal was if I just happened to be calling out at the exact time she was calling me. I did have our home phone forwarded to my cell phone. But even that has caller I.D. and call waiting.
Oh well, if complaining gets my child pushed to the head of the line, that's fine with me!
I know it's not just me though. I've talked to another mother who was in a very bad situation and information was not carried through with like it should be.
Don't you just hate that you have to turn into a bitch to get things done for your child sometimes!

Adding up Naomi's seizures

2010-01-16T09:49:00.004-05:00

I just ordered this off of Amazon.com.
Right now I use index cards and put tic marks on them to keep track of Naomi's seizures. I don't know why I didn't think of ordering one of these earlier!
Yesterday we saw Naomi's neurologist. I wanted a face to face meeting because her seizures are just going down hill. They're very quick and the neurologist feels they're probably doing no real damage to her brain. It's just that she falls with EVERY one of them. The risk is in her falling and hitting something. Right now we're with her constantly or we have her contained so she can't harm herself. We're pushing the Zonegran. The doctor said if we're going to do it lets get it in there and see if it helps. So instead of waiting 1 week to start her on an evening dose we started that last night. So she's on 25 mg twice a day now. She'll go up to 50 mg in the a.m. and 25 in the p.m. next Friday and then I can wait 4 days or so and add in the final 25 mg dosage at night. 50 mg a.m. and p.m. is our goal dosage.
Also the dietian added 100 calories to Naomi's meals on Friday the 8th and I had Naomi weighed the 7th. She was 15.6 KG then. Yesterday at Cleveland she was just over 16 kg. So Tuxhorn said go back to the 1200 calories a day immediately and look into going even lower.
Tuxhorn also felt like maybe the increase we're seeing is age related. Maybe she's moving into a new phase of her epilepsy. Well, I hope that at the end of this down hill road is a finish line. I don't think that's what she was implying but it's certainly what I hope for!
When you check in at Cleveland Clinic neurology they give you a computer to do a survey about quality of life and so forth. The first question is how many seizures has your child had in the last 4 weeks. So I sat there with my calendar and added them up. The total was 770. Then when we went back the girl said "how many seizures has she had in the last 3 months". I told her what the 4 week total was and I guess she figured something out. Lord have mercy! I am not sitting down and adding all that up. I do not even want to know!

Naomi

2010-01-14T20:02:00.003-05:00

Well, I just can't take it anymore.

Naomi was put on 1300 calories a day last Friday hoping that would help her seizures. It hasn't.

I got the prescription for Zonegran filled Monday evening and hated to do two changes so close together, but I had to try something else.

So now it's Thursday and for two mornings Naomi has woken at 4:30 a.m. Then only napped about an hour during the day. She didn't go to sleep last night until about 9:30. Tonight I'm taking her up before 8:30 and hoping she'll fall asleep soon.

She's having over 40 seizures a day and it feels like all we do is follow her around waiting for a seizure to happen.

Last night and this morning she didn't seem to have the appetite she has had. I was afraid it was the Zonegran causing loss of appetite. Well, she ate the rest of her meals well, so I guess we're safe there.

I called Cleveland Clinic this morning to ask the nurse about sleeplessness and loss of appetite as side effects. Then the more the day went on the more I decided I wanted to meet with the Dr. face to face. So I called to make an appointment and they can actually get us in tomorrow afternoon!

Normally, my day would be wide open. But don't you know I had a 2:15 appointment to update Naomi's IEP and a 4 o'clock hair appointment with a beautician who is booked for 2-4 weeks out! So I had to cancel both. The hair appointment hurt the worst! :) You know how it is! You finally get to do something for yourself and have to make other plans and push that back.

So tomorrow we'll see her neurologist and see what she says. I've sort of had it with the diet. It just seems no matter what we do we're not getting consistent results. Normally if you fast the child and see positive signs such as lessening of seizures, it means they are getting too many calories. When I fasted Naomi for 24 hours she stayed much the same, even having some stronger ones towards the end of the fast. So then she just kept going down hill. The dietitian added calories. Naomi is active and my one thought about the calories was that most children who are about to turn 4 don't need a daily nap after sleeping 10 hours. But she would. So maybe she didn't have enough energy to get her through the day. Now with these 4:30 a.m. wake ups she's got way too much energy!

Oh, well. I'm not going to ask to stop the diet, but if the doctor suggests it I'll go along with it. Although in all honesty. I would really have a hard time figuring out what to normally feed Naomi! I've weighed her meals and went by her little chicken, vegetable or fruit and cream meals for over a year now and that just seems normal.

Zonegran

2010-01-14T05:24:00.003-05:00

Tuesday Naomi took her first dose of Zonegran at 6:45 a.m.

Wednesday she woke at 4:30 a.m. ready to go! Took her second dose at 6:45 a.m. I had to phyicially hold her down in my bed and make her take a nap at 12:45. She slept one hour.

Today is Thursday and again, woke at 4:30 a.m.

Calling today to report that sleeplessness is probably a side effect for her (and me).

Tained Jewelry

2010-01-13T07:00:00.003-05:00

Have you read about the latest jewelry being pulled off store shelves?

More made in China stuff. Kids jewelry containing cadmium.

Well the guy who tests all these things works walking distance from me!

So when he goes to Walmart to buy these things to test, he goes to MY Walmart!

That just brings it all way to close for me!

I'm so glad that Naomi can't ask for stuff like this. That she's not wearing toxic jewelry around her neck. We've got enough issues!

Naomi November to now

2010-01-09T07:57:00.006-05:00

Well in November we met with our dietitian and neurologist. Naomi was having about 30 seizures a day then. The dietitian had no recommendations and was pleased with Naomi's growth over the last year. The neurologist wants to try the drug Zonegran on her. She does not want to push the dosage because she feels Naomi is at risk of a sedative effect and that will not help her development. The neurologist wanted to talk to her nurses about how best to administer it to Naomi, since she's on the diet and I can't just go to the fridge and get a spoonful of jelly and mix the meds in that so it'll slide right down her throat. That's the only way I used to be able to get meds in her. Unless they could be crushed and mixed with water.

Well a few weeks went by and I never heard anything and one day the nurse that has taken over for Martin called.

Martin was a saint! He was everything you want in a nurse. He didn't keep you waiting. He's obsessive compulsive with his work. Not only that he'll help you work around the system if that's what it takes. When our Dr. didn't address the carnitine deficiency he told me to contact our metabolic/mitochondrial Dr. and they would get Naomi started on carnitine.

So back to the new girl. She called about some paper work, but then I asked about Zonegran and what was going on with that. She checked the Dr.'s notes from our visit and saw that it had been recommended so she was sending the Dr. a message. Then we never heard anything again. So finally Naomi got sick with that bad stomach bug in December. After the stomach bug she had some glorious days where she had very few seizures and she seemed to be on a streak. The Sunday before Christmas she only had 1 seizure all day long! So December 23 I talked to the nurse and said I'd like the prescription, but want to hold off giving it to Naomi. She was on a streak and I didn't want to tip the apple cart. She talked to the Dr. and got back to me on December 30. The Dr. was fine with holding off. Well, I told her things had changed and Naomi was going downhill and I wanted the prescription. I realized it was a holiday weekend and I was fine with waiting until Monday for a prescription. So Monday came and I contacted Naomi's dietitian and told her Naomi was going downhill and asked about getting a glucometer to see what was going on. She was fine with that and emailed the keto nurse who then emailed the new nurse to see if we could get a prescription for it. Well I never heard anything so Wednesday I just called our pediatrician and had her give me a prescription. I got a meter that tested glucose and ketones. Then I emailed the keto nurse and told her. She emailed me a reply that she'd notify the nurse, the Dr. was on vacation and she'd been waiting for her to get back for approval. Well let me tell you, if that was Martin he would have called and told me that the Dr. was on vacation and if I wanted it to go through our pediatrician. So then on Thursday I get a call from the nurse on my answering machine that she's not sure what is going on. She got a message about a meter, but no one on their end had ordered one. I'd have to go through my primary care physician and she hoped she wasn't getting the message wrong. That she hoped this wasn't about getting a prescription for urine ketone test strips. UGH! I was so aggravated. What I ended up doing was sending an email to someone I know that works near our neurology department and asked what was going on up there! I just wanted to know, should I be worried. What should I do. So the person I know talked to Martin and he said call, call, call. Be persistent and if I feel like messages aren't getting sent correctly to make and appointment and meet with the doctor face to face. Especially if the seizures get worse.

So Thursday morning I was a little pissy when the nurse called. Then she called me back Thursday night. The Dr. was stuck in the suburbs because of a snow storm but she wanted to review Naomi's chart and she'd give us an answer on Friday. The nurse said "I will call you Friday". Well Friday at 3 p.m. I hadn't heard anything. So I called up there and left a message to see what was going on. Finally at 5:10 my phone rang and it was a different nurse from our Dr.'s office and she said the Dr. had reviewed the chart and proceeded to ask where I want the Zonegran called in to. Then gave me a schedule for titration. Shewww! Glad that's over!

But in the mean time!!!! Our dietitian upped Naomi's calories to 1300 a day, which seems like a lot! So Friday night her last meal I gave her the higher calorie meal. Twenty five more calories than her previous meals. It's now Saturday morning and not long after waking at 6, Naomi had a drop seizure. Then we came down stairs and I checked her ketones, which were 3.2. They aim for her to be 4+ when she's on the diet. Her glucose was 72. It was actually higher than that when she was sick and her seizures weren't so bad so I'm not so worried about that. It's now after 8 a.m. and Naomi has hardly went more than 10 minutes with out having some sort of seizure. Myoclonics are what I"m seeing. It's like her ab muscles quit working and she just kind of goes forward then falls back. But, she's very chatty. Saying ball, playing ball, just really present. So we'll see how this goes! I really feel like she fell out of ketosis before right after she was sick. Her breath had that rancid smell they get when they first start the diet, before the ketones kick in. Then the more of her meals the ate the worse she got.

We'll see. Nothing I can do but wait. The pharmacy doesn't carry Zonegran 25 mg, so they have to order it. With the weekend it'll be Monday before they get the shipment. So that means it'll be Tuesday before I can even start it anyway.

Naomi in the fresh snow

2010-01-08T11:51:00.003-05:00

First she thought it was GREAT!

Then she had a "wardrobe malfunction"

Then she decided to go head first and start dipping into the snow.

Then we went inside to warm up those cheeks!

Snowy Day

2010-01-07T15:14:00.002-05:00

This is out front of my house at 3 p.m. There's a 4 lane road there somewhere.
Today several of the area schools took a look at the radar and decided to release kids at 1 pm.
Not Isaiah's school. He has math club after school and I called to see if it was cancelled. It was not. It is going on as planned. So he's still in school. Thankfully my dad has a Dr appointment in town today at 3:50 so he's picking Isaiah up before he goes to the Dr.

I'm thankful I don't have to bundle up Naomi and take her out. She needs a nap anyway! She is refusing sleep. I've got the electric blanket warming up and it's just waiting for her and I to jump in!

I'm hoping for a snow day tomorrow! I'd like a 3 day weekend as well as Isaiah. Plus it's always rough on the kids going back to school after a long holiday. This will help ease the transition!

I'm wondering if the administration is having second thoughts as they load our precious cargo onto buses and they drive off on unplowed roads?

Medical Mystery Show

2010-01-04T14:52:00.002-05:00

Last night we flipped past one of those shows that starts with a person's symptoms and all they went through trying to find a diagnoses. Well this one was a little girl. Her mom would put her to bed every night and about an hour into sleep she'd vomit.

They took her to all sorts of doctors, even an allergist, who gave her something to keep her from vomiting. It worked one night then the vomiting continued and got worse. She started vomiting multiple times a night.

Already by this point I have looked at Bill and simply said "seizures".

So then the woman says her daughter vomited one night and as she cleaned her up she asked if she was alright and the little girl was slurring her words. The mom was scared to death and thought she'd had a stroke.

Again me: "Seizure"

So they take her to the ER and a neurologist sees her they do an ______ come on mother's of epileptics? Can you fill in the blank? Correct! MRI! It came back normal

Then they did ______????? Any guesses???? An EEG! YES!!! Of course. Sounds like some of you have been through this before!

That's pretty much how Bill and I continued watching the show.

They were putting leads on the girls head for the girls EEG and we said "OH! I always wondered how that worked!"
The EEG seemed normal but they wanted to get a record for what happened to her as she slept. So they admitted her and did a video EEG where, as they explained, the child was hooked up to EEG and was video taped simultaneously 24 hours a day.

By this time, they are preaching to the choir! We were not the family to be touting this in front of! We know all about this bit of technology. Naomi has stayed on two occasions in the pediatric monitoring unit going through this exact thing.

They showed the EEG and the video of the child as she vomited. This is where we lost Isaiah.

He can almost vomit on will, but can't deal with others.

The neurologist went on to say that the child had epilepsy and they explained what went on in the brain during a seizure. So they got the child on medication. She said she had to take 14 pills. Then at the end the mother came on and said the child hadn't had a seizure in 3 months.
I looked at Bill and he said "that just pisses me off. Why can they fix that kid and our poor baby still has seizures every day".

It's a sad thing. I hope all kids are seizure free at some point. They sure didn't spend much time explaining that they often don't know why kids have seizures.

More about Naomi later. I'm waiting for instructions from the clinic now.

Priorities

2010-01-03T10:57:00.004-05:00

I was talking to a girlfriend this week about cell phones.

I was telling her I saw a mom who looked like her family didn't have much and she brought her child in for therapy. Now this is at 9 a.m. and that boy looked filthy. How can a kid look like he's played outside all day at 9 a.m? Then the mom sits down, pulls out her cell phone, opens it and proceeds to spend the next half an hour watching a television show on her phone!

The phone had to cost some money, but that's a one time expense. So I don't even have internet on my phone! I mean just how connected do we have to be! I actually have a very old plan that I don't want to change because it's cheap. But it doesn't have unlimited texting like newer plans. So I got rid of texting all together. Can't text at all. I know, how do I live right?!

My girlfriend was saying she sees so many people who have rotten teeth and need dental attention and there they go pulling out an I phone! Seriously! Save that money and put it away so you can have something that matters!

Now tax season is coming up and you know there will be a run on new cell phones and big screen tv's! Last year a friend of Isaiah's said they got a new TV. This is a kid who I had given several things to him and his siblings, including socks, because they'd show up here before school and have none. So what do they do with their tax money? New shoes for the kids? Put money away for the laundry mat so they have clean socks? Nope. They pay over $700 for a new TV. Which the kids say they needed because while the old one worked it would get lines across the screen sometimes. OK, replace it, but $700! Get a smaller TV! They lived good for the month of January but by mid February they were broke, again.

This terrible economy that we are going through is rough. But I really hope it has made an adjustment in peoples spending and they will think twice before they go out and spend hundreds on a new phone or tv, and not have money for their kids lunches.

Resolution

2010-01-01T09:35:00.003-05:00

I never make a resolution. So, I never break my resolution.
But this year my New Years resolution is to read this book.

I chose this particular book simply because it's available at my local library. Then I realized there was a movie and could have just watched that!
I know myself too well though. If I like this book. I will read anything and everything I can on the subject and then watch any movie. I've done it before with Thomas Jefferson and the Romanov's.
The reason I want to read about Gandhi has to do with religion. Not that I'm converting or anything. Just that I have issues. I know I'm Christian and I do accept Jesus and my savior. But where I waver is that unless you accept Jesus you can't get into heaven. First on my list is Gandhi. I can not believe that with the life he led God would leave him out in the cold. You know all those WWJD bracelets? This seems to be a man that didn't have to ask that. He did the right thing. Not that he was perfect, just more perfect than others who seem to think their place in heaven is set.
On the ketogenic support group there was family that lost their son in November. They were Buddhist and while they took his death hard they also accepted it rather quickly and went about trying to repay the kindness shown to their son. I'm sorry, but I say hurrah for finding peace so quickly. How ever it was. I see God in that. I think God sent them what ever they needed by what ever methods.
This also reminds me that once I read something and a person said "if there is a God why are there crippled children". The answer given was to teach us compassion. Well, I think that goes for many things that are seen as sinful or wrong. I think everyone is sent into our life to teach us something. Whether it's compassion, empathy, patience, persistence or unconditional love.
We had a visiting speaker when our pastor was on vacation. Quite frankly, I didn't like his message at all! He worked at a local college which is VERY liberal. It was the first in the country to admit women and blacks. Well, he kept saying that even there, God was present. Like all the kids going there were heathens and came from heathen homes. They had a small group of Christians that would go out of campus and try to get people to talk about their beliefs. What really turned me off was when he talked about one person who was part of the group who when he came "thought" he was a Christian, but in talking to him they found out he wasn't "really" Christian. If I was that kids parents, and I raised him Christian in the beliefs of our family and such, I would be MAD! I would actually be irate and scared that he'd entered a cult! To me you should not go out and try to reel people in by bum rushing them in the quad! You should live your life as an example that others want to emulate. They should want to have what you have. Do good for others, that kind of thing. If they start talking to you and ask you questions, by all means answer them and an invitaion to church never hurt anyone. But don't chastise them as sinners when they don't show up!

So I want to read up on this Gandhi and know more about his life and what he accomplished and how. Maybe I'll find out he doesn't give a hoot if he got into heaven or not.

Happy New Year

2009-12-31T14:39:00.001-05:00

2009-12-30T16:50:00.004-05:00

I love the 1995 version of Pride and Prejudice. This scene where Collin Firth as Mr. Darcy comes out of the water... oh my!
This clip also shows Elizabeth Bennett as portrayed in this version.

My sister in law loves the newer version of Pride and Prejudice starring Kiera Knightly. I just watched it today and while I like that she is a more expressive Elizabeth. I can not see anyone else as Mr. Darcy! To me Collin Firth is Mr. Darcy. What ever role he plays he is always Mr. Darcy to me.
The 1995 BBC version definitely tells the story better and explains the relationships deeper.
The awful cousin who comes to choose a wife among the sisters was way creepier in the BBC version!

My mom also loves the BBC version and came in today when I was watching the newer movie. Her feeling is that Elizabeth shouldn't look so anorexic. Which is funny because Kiera Knightly looks like she may have actually plumped up a bit for this movie. Like gained 5 lbs or something. She doesn't look so extremely thin as I've seen her in others. I thought she looked a more healthy weight.
I like the new Mr Darcy, but he played Arthur Clennam in Masterpiece Theaters version of Little Dorrit by Charles Dickens. I loved him in that role and when he's supposed to be Mr. Darcy I can't help but think of poor little Amy Dorrit who so loved him. Yep, he'll be Arthur in every film forever more!
Funny thing is, I like Hugh Grant movies and he's been in plenty of these types of movies. But all of his movies I see... Hugh Grant. I can't name the particular characters he's played, he's always just himself to me! Although don't get me started on his dance scene in Love Actually!
Well which Darcy do you prefer?
Have you seen either?
I actually got to watch a movie last night also! 2 movies in as many days is HUGE for me! I feel half normal! Well, Signing Time is running on my DVD now to bring me back to reality!

Magazine Article

2009-12-29T17:07:00.003-05:00

Last Christmas my cousin got me a subscription to Southern Living. This month they had a sort of "best of" section.

The best drive in West Virginia was the New River Gorge, Fayette County. I read the article then had to call my dad and share it. He is from Fayette county. He has a sister and a brother that live with in a mile, as the crow flies, from the New River Gorge Bridge. It is thelongest steel arch bridge in the western hemisphere. Now, I'm not saying the drive on route 19 across the bridge isn't beautiful. It is. But the article goes on to encourage people to stop by a visitor center and pick up a map that shows the other roads that you can take. Even encourages the use of the thinnest and squiggliest of roads. That's a link to the map. At the top there's an old photo of a car going between rock walls. Yes it's an old photo. No the roads haven't been improved since then.
That's what really caught my attention! I have driven those roads and they should mention that while the roads are steep and switch back, (yes! switch back not just merely curve) they are most definitely not one way roads, yet they are one lane. So it is not uncommon to go around a switchback and be head to head with a bus bringing rafters up from the river. Generally you have 2 choices here. You either get as far over on the shoulder as possible, yet not in the ditch or down the side of the mountain. Or you throw it in reverse until you come to a spot where there's enough flat land and you can actually pull over safely. I've been driving and come straight into a logging truck and had to throw my car into reverse until I got to another small road and pulled into that road until the truck passed.
Honestly, if you are driving any of these roads the people in the back seat will be the only ones able to take in the views. You and your front seat passenger will have you eyes glued to the road to see what is coming at you.

My Dad told me that his cousin bragged on how pretty it was down there and a fellow from here in town took him down there once. When the fellow came back someone asked him if it was beautiful and he said "I'll tell you. If a fella went down there with a truck full of weed eaters he could make some good money". That's the truth of it too! It is nothing but weeds and dilapidated houses.
The #3 best drive in West Virginia was route 52 from Bluefield to Welch which I'm also very familiar with. My husband is from the Welch area and we get off interstate 77 in Bluefield and take route 52 to his mother's house. I seriously don't know what they want people to look at? Old coal camps? Which are abandoned or abandoned looking small houses with dirt yards, all looking the same and more weeds. Oh I can't forget the junk cars! Where would they be without the junk vehicles piled in yards. Maybe that's what they want people to see.
Now I have been to West Virginia more times than I can count and every time we drive up out of my mother in laws going east on 52 towards Bluefield I get sick to my stomach. It is so curvy and ugh, I'm getting nauseous just thinking about it!

It is a pretty area. But if you are not familiar with the roads it is dangerous!

Why Naomi Got Coal For Christmas

2009-12-27T18:50:00.001-05:00

Our Vines Have Tender Grapes

2009-12-20T09:15:00.004-05:00

OK ANOTHER movie!
I caught part of this movie while flipping through the channels the other night and it was so good! It's a good movie for our times. It was made in 1945 and is basically about a farm community in Wisconsin and a few trials that happen in the community. The last scene had me in tears! After the movie was over the AMC narrator said that the director of the movie was black listed during the McCarthy era. They thought he was spreading communist propaganda. I mention this because the last scene could be construed as such, in a very twisted mind! I'd call it charity, neighbor helping neighbor or a grand act of kindness that kindled a light in others to do the same!
I have to check out our library to see if they have this! It was so cute. If not I may just have to buy it!
I also watched Akila and the Bee on Disney and LOVED it! What a great story!

The Lost Prince

2009-12-19T10:26:00.003-05:00

For some reason I woke up thinking about this movie today. It was made for TV in 2003 and I've caught it a few times on the local PBS station. It's the story of a British Royal who's been lost to history. He's forgotten because he had epilepsy and his family hid him away. Because of his "fits" he was thought of as an embarrassment to his family. It's a very touching movie. I haven't seen it in a while, but I remember there being one brother in particular who tried to connect to this prince. I think the brother who befriended him was Edward, the one who abdicated his crown for the love of the divorced Wallis Simpson. It is a very very good story. If you happen across it at your local library or what ever, check it out.

HATE IT!! HATE IT!! HATE IT!!!!!

2009-12-17T10:39:00.006-05:00

Look Quick Before She flings It!

Since I first posted this Isaiah said the following to Naomi.

"Sissy, don't think of it as a safety helmet. Think of it as a tiarra."

Last night I dreamed Naomi's helmet came and I actually cried in my sleep seeing her in the first time. Then today at therapy the girls brought her out and she wasn't wearing her helmet but they were carrying it. Her face was red and blotchy. She'd been screaming and crying while they were making sure the fit was right.

In the photos I don't have it on her right. It's not low enough. But I was just trying to get her to wear it. It's a 2 person job getting it on her head I tell ya! It was a fight then I had to distract her and throw in a video so she'd leave it on for more than a second.

It's not the run of the mill helmet. The therapists felt that the regular padded blue one wouldn't work. She'd just play with the strap. So this was was made. It molds perfectly to her head. It's the type of helmet they use for kids who's heads need to be shaped.

She went through so much today I have cancelled the ultrasound that was scheduled for tomorrow. Neither of us need to go through more stress this week and in talking with her ketogenic nurse she said the slightly elevated lipid panel is expected with the diet. So at least now I can cancel with a clear heart without feeling like "Mommy Dearest" and just waiting for children's services to come knock down my door and demand to know why I didn't follow Dr's, well Nurse Practitioner's orders!

Who's side are you on

2009-12-16T13:35:00.003-05:00

Ok, If I've blogged about part of this forgive me.
Isaiah has really been assigning things to this side of the family or that.
Isaiah you didn't flush the toilet- "Sorry mom I get that from Dad's side of the family".
Isaiah you didn't shut the gate- "Sorry mom I get that from Papaw's side of the family".
Naomi passes gas very loudly- "OOOOOOHHHH she takes after Dad!"
Isaiah wash your hands- "That's from Grammie!"
When we go to some one's home and they're not home Isaiah puts a broom across the door or moves the trash can in front of the door "Just to let them know someone was here. That comes from the Sayler side". It really does though! This year he's met family members he never really knew before. They are cousin's to my Grandma Naomi who's maiden name was Sayler and guess what! They do that too! The 73 yr old Grandpa Sayler thinks it's hilarious and his son thinks it eerie that Isaiah just seems to do that without being shown or told that it's "a Sayler thing".
About not flushing being from my husband's side of the family.. Funny thing is my Dad's sister said she's pretty sure it's from their side of the family since they never flushed a toilet when they were growing up. They had an outhouse and it was built over a creek so the creek just carried it down stream. My Dad thought his Grandparents were rich because their outhouse had a cement floor.
Isaiah once asked "If Dad is a hillbilly and you are half hillbilly. What does that make me."
I responded "A Buckeye!" Which he thought was hilarious!

Sick Kiddo

2009-12-15T10:21:00.003-05:00

Naomi has been sick for about a week now. Here's my week in review!
Tues.the 12th at 8pm- doesn't want to finish meal she usually wolfs down.
Wed. the 13th 11 am- vomits has no appetite. 7 pm vomits again
Thursday the 14th vomits once today
Friday the 15th 11 am vomits bile. I call the pediatrician they can't get her in. She shows no signs of dehydration. Just trying to get liquids in her. 3pm vomits a small amount of bile again. OK now we seem to have a clean slate.
Saturday the 16th- the pediatricians office opens their schedule for Sat. at 8:30 so at 8:27 I start calling over and over until I get through. Get her an appt. for 9:20 am. The Dr is running late but we get seen and she orders blood and urine labs. The nurse puts a urine bag on Naomi (OH so much fun) and we head to the hospital to have blood drawn at the lab. Check her at the lab, no urine yet. It's 11 am. Head home to wait it out, keep checking for urine. Nothing until after 3:30!!! So Bill's home by then and I leave him with her and run the urine sample to the lab, which is closed. So the hospital volunteer calls someone down and they take it and get the test done. She didn't vomit at all on Saturday. Sunday night.... 10pm diarrhea.
Monday morning first thing and I do mean FIRST. I'm sleeping Naomi has moved in bed so her head is facing the bottom of the bed and her butt is right in my face. She explodes with diarrhea. Waking me up. The worst ever alarm clock! My goodness the smell! I guess this must be the virus making it's exit, in a big way! So two more rounds of that then her stomach seems somewhat better. She's eating little, drinking a little more but sleepy.
Today she slept from 7 pm last night until 6 am this morning and even ate some breakfast. Then by 8 she was sleepy again and has acted sleepy most of this morning. Falling asleep occasionally for a nap which is then interrupted by the phone ringing. The first call was the pediatrician's office saying the nurse practitioner would like to have an ultrasound done of Naomi's liver and gall bladder, I ask for kidney too because, Hey, if we're putting her through this lets rule out kidney stones which are not uncommon on the ketogenic diet. Then my Great Aunt called wanting me to email someone for a recipe, easily done. Then it was the school nurse, they're giving out H1N1 vaccines to all the kids at Isaiah's school and he told them he'd had an immunization. I have gone over this with him! Yes, he had the regular flu shot on Oct. 26! Plenty of time has passed! I'm still on the fence something terrible about getting this vaccination for him, but it's done now! He takes the others fine. I just feel like the odds are since they're doing the entire school, one kid has to have a bad reaction! I just don't want it to be mine! But then again they're giving the nasal mist and that is a live virus. So, since such a large number is getting this vaccination what about the kids who aren't? Since it's a live virus is there any way that it could be spread to those who don't get it. It's such a hard call!!!
Well Naomi's up and about now. We'll see what this day holds. Her ultrasound isn't until Friday.
My furniture is here though! I can't get a good photo. It's green and ends up looking taupe.

My Order is In!

2009-12-10T15:05:00.003-05:00

I got the call today that my new sofa and chair are in and can be delivered.

So where's the pictures of the nice new furniture in my home?
I told them to hold off delivery until Monday. Naomi threw up twice yesterday and is gassy today and I don't know what is to come. She isn't eating right. I'm making sure she gets her carbs because her ketones are staying high and I don't want her to get too far into ketosis because in the past that has made her seizures worse.

So hopefully by Monday we'll be back to normal. I won't have to fear her baptising my new furniture with vomit.

I've never had this with either of my kids, and it's nasty, but her gas smells the same as what a prescription of antibiotic pills smell. That moldy smell. Lovely :)
One more thing. Every time she passes gas Isaiah says "She gets that from Dad".

Kicking off the Holidays

2009-12-06T18:01:00.003-05:00

Today was potluck at church then they decorated the church. Bill, Naomi and I left but Isaiah wanted to stay and help our cousin decorate. Not a kid, a 40 something fellow and several other older men who are past retirement age. He helped find the junk bulbs so one of the old guys could repair them.

On the way home we stopped at Sells Farm to see Santa's reindeer. Naomi noticed them and pointed, which is good. There's been times she'd have been oblivious.

Santa saying "Don't pull on Santa's beard". Good luck with that Santa!

When I told my mom that we took her to see Santa she asked if Santa had any whiskers left.

Naomi is notorious for pulling out facial hair in the men in this family! With her teeth!

Saturday we ran to Possum Run Green house for the holiday open house. They have the best Santa and Mrs Claus set up in the area! (on the way home Bill noted he didn't think that Santa would be around many more years. The poor old fellow is very shaky like he has palsy and has a hard time walking. God love him!) When Isaiah was 5 we drove past the greenhouse in October on our way to a wedding reception and Isaiah said "Hey, that's where Santa lives!".

They had two of the most gorgeous Christmas trees I've ever seen! I thought I didn't like fake white trees but these were stunning! One had all red ornaments, cardinals and such and the garland that wrapped up the tree was like red berries. Gorgeous! The other tree had no ornaments it was just those things they stick in the tree. I don't know what to call them. Anyway they were the color of leaves in the fall, but metallic. Like bronze and gold and a metallic red the color of a red maple. If that tree was in my house it would be up all year it was the most beautiful non traditional tree I have ever seen!

The Birds

2009-12-04T11:27:00.004-05:00

No it's not a movie review. It's true life! Why do they come around every so often? They are so noisy! They are pest. Too bad they don't eat squirrel! When they all take off together they cast a huge shadow!

A Trip to the bank

2009-12-02T12:44:00.002-05:00

Who knew a trip to the bank could be so entertaining.
Naomi and I picked up my Great Aunt, who will be 83 next week, to take her to do her banking. Here's the conversation when she got in the car and we were leaving.
Me: Did the Eagle shit? That's what Grandpa Charlie used to say when his SS check would come
Aunt: No he shits tomorrow and all that's left from last month is a whiffer

Family Photo

2009-11-29T18:48:00.002-05:00

My cousin asked if I had a photo of the 4 of us together. No. He couldn't believe it.
I'll work on it. I told him. So on Thanksgiving I took my camera with me to my friends house and had her try to take a photo of us. Am I happy with it? No, but getting a picture of the 4 of us is like getting your drivers license photo taken. It's never gonna be great, just go with what you get! After 4 or 5 tries this was the best. It's only the best because I cropped it also! My camera has an extremely slow shutter speed and I don't know how to correct it!
Don't ask what Isaiah was doing. He should be the easy kid! Then Naomi was distracted by the items on the mantel and would not turn around with out screaming because we were trying to take her away from something that looked like it would make a good missile. We tried to stand her beside ups but she was not having that. Oh well. At least I have proof we were all at one place at one time, at least once in my kids childhood!

Something for everyone

2009-11-28T12:10:00.003-05:00

I got a new washer

Naomi got a reading nook.

Happy Thanksgiving

2009-11-26T09:33:00.001-05:00

Cooking

2009-11-25T10:57:00.003-05:00

I don't mind cooking at all. With Naomi it's a little more difficult. I can't leave her alone and I can't have her in the kitchen with me. So I have to put her in the high chair to play with a puzzle or book. I don't like leaving her there too long though. So I can't get much done.
Thankfully I have a friend who has invited us to Thanksgiving. My parents will be there also. I don't have to take anything but I am going to make one thing. Here it is. It's a Paula Deen recipe

Pineapple Casserole

1 cup sugar
6 Tablespoons all-purpose flour
2 cups grated sharp Cheddar cheese
Two 20- ounce cans pineapple chunks, drained (reserve 6 Tablespoons juice)
1 cup Ritz cracker crumbs
8 Tablespoons (1 stick) butter, melted

Preheat oven to 350 degrees. In a mixing bowl, combine sugar and flour. Gradually stir in cheese. Add Pineapple and stir well. Pour mixture into a greased casserole dish. Combine cracker crumbs, butter and pineapple juice and spread it on top of pineapple mixture. Bake for 25 to 30 minutes or until golden brown.

Now, the first time I read this recipe I thought "cheese and pineapple? yuk!". Let me tell you there is no yuk! It is soooo good! Doesn't a topping of crackers and butter make everything good!?!

Social Studies

2009-11-23T13:00:00.002-05:00

What kind of kid brings home his Social Studies book, even when there's no homework, just so he can read it?
What kind of kid takes their Social Studies book along in the car so they can read on the way to the restaurant?
My kid!
It's the heaviest book he has! It weighs down his back pack. It is at least 2 inches thick. The boy just loves Social Studies!

What's Bigger than Turkey Day in Ohio?

2009-11-21T06:21:00.002-05:00

The Ohio State VS. Michigan game of course.
If you don't know, we don't give a damn 'bout the whole state of Michigan (it's actually a song!)
I really don't give a damn 'bout football. But I love the marching band!

Back to the Clinic

2009-11-17T16:49:00.002-05:00

Today we had our 1 year check up since starting the diet.
The dietitian is happy that Naomi has thrived. Her weight and height are going steady. She had no ideas of changing anything in her diet. So she's still on 3.5:1 ratio 1200 calories. What ever.
We told the neurologist she's still having about 30 seizures a day. The neurologist suggests that we try Zonegran. It's not approved for monotherapy, but we'll try it as just that. If she has any side effects or it doesn't work we'll stop it. Also we won't push the dosage. If it works we'll use it. If not we won't push we'll just wean her off it. That makes me feel a little better. The Dr. is not asking for a commitment to try this drug for long term.
So we'll see how that goes. I don't even have the prescription yet. The Dr. was going to check with her nusing staff and see how best to give the meds. What form I mean. It's not easy to give her a tablet, she'll either bite it or spit it out. Plus with the diet it's not like I can just stick in in a spoon of jelly like I used to.
This drug doesn't affect their kidneys and such like some of the drugs. We'll see. The side effects of any of these drugs are scarey.

The Brass Band

2009-11-15T21:04:00.002-05:00

I took a small video of the band at church. In case you can't tell, I wore a green sweater :)

Weekend of Nov 14-15

2009-11-15T13:00:00.002-05:00

Saturday night was our church's annual Turkey dinner fundraiser and they fed over 545 people. That includes our party of 12.
Today Bill stayed home with Naomi so I could go to church. The pastor is on vacation and a 7 piece brass band came and played for us! It was great! They ended with some Christmas music which made us all ready for the holiday to get here!
Today Bill turns 40. I got him a card. Isaiah got him the movie Transformers. (guess who will share that gift!)
I need to think about what to fix for dinner. Like most men Bill loves meat! So I may run out and buy him a big T-bone or Porterhouse steak. He also loves coconut cake, but the one I make tastes best if it set for a day or two, and it's a lot of work! So he may get another favorite, banana pudding.

Naomi's first ever school picture

2009-11-13T18:20:00.001-05:00

She screamed and cried the whole way to the school and it's not far away. About a 20 walk! So I'm glad her nose dried up before we got her picture taken!

See how the skin is around her eye? In our last trip to the neurologist a Fellow who observed noted mild facial dysmorphisms and I think that's what she meant. I think that's like down syndrome kids etc.. But Bill's toddler pictures look the same way! So what ever. Just another Dr's note to worry over!

The Substitute Car

2009-11-12T07:25:00.000-05:00

Isaiah calls it our substitute car. I'm thankful we got a nice new vehicle. It's a 2010 Dodge Avenger with only 4000 miles on it. Still has that new car smell. It'll be ours until Tuesday. That's how long they predict it to take to fix our car. We've had it since October 21.Right now it's in the body shop. Over $6000 in damage was done. The tow truck guy said if the air bags would have went off they would have totaled it. I guess those are like $2000 each and our car has 4 of them. The collision repair company that has it gave me an i.d. number and I can go on their website and there will be updates and photos showing the progress.
Isaiah likes the substitute car. I like it, but I wouldn't buy one. The thought occurred to me that if I were to buy a new car I should rent that model first. I like the looks of this car but learned quickly the trunk isn't what I need. I hate those black things on the back seat windows. They make for a terrible blind spot. The lights don't automatically come on at night. I leaned that the hard way! I can't remember the last car I had that didn't have lights that came on when the sun set.

Naomi had to have a new car seat. Once a car seat is in a wreck you aren't supposed to use it again. I went to Toys R Us and bought the new seat and couldn't get the box in the trunk! I had to take the seat out of the box and put it in the back seat. Then I had to break down the box and lay it in the trunk.
I miss my sunroof. I miss the display that tells me what temperature it is outside and the heated seats not to mention remote start on a cold morning. All of that was standard on our car. This one is, well not bare bones. It has power windows but it's basic and I'm someone who generally likes that in a car. Less options, less things to go wrong.
I also miss the Thomas Trackside Tunes and Mickey Mouse Playhouse CD's that are in the CD player. They keep Naomi quiet. I also miss my CD that I won from Susan. Isaiah misses it too. He asked "where's your music?". That's what he meant, he plays the Grace Kelly song over and over. This car only takes 1 cd at a time. Mine holds 6.
Over the sun visor I found a card from a funeral. Someone must have rented the car to go to a funeral in Pittsburgh. Isaiah actually found it. The rental agreement was up there too. Isaiah said "what's this junk?". Then he said "This car is just like Papaws truck. He's always got stuff over in the visor." Not so much! Papaws is so much worse!

When I look at the photos of it in the body shop the doors are off and it's covered in a tarp. I wonder what they did with all the crap in the back seat. Bill was going to clean the car out. There's a ton of books and loose (clean) diapers. Not to mention my empty Starbucks cup from that morning! I hope they throw that stuff away. I can't imagine what's growing in that cup if they don't!!!

Happy Veterans Day

2009-11-11T10:28:00.005-05:00

My dad's Marine photo about 1968

My Grandfather on my father's side was in WWII as was his brother. Both in the Navy.
My Dad was a Marine for 2 tours of duty in Vietnam.
My Father in law was in the Army during the Korean War.
My cousin, and two different cousin's husbands were in the current war.
But saddest of all is Bill's uncle James Ray Sargent who's mother reluctantly signed papers for him to join the military at 17. He went to Vietnam when he turned 18. He only lived a short time. His remains were just identified in 2005. Fragments of him were found and they took DNA samples from his brother and identified him that way. His remains were buried at Arlington National Cemetery. Here's another website in honor of him with pictures.

Last Treatment

2009-11-09T06:39:00.002-05:00

Today is my Dad's last chemo treatment. Sometime this month they'll do another bone scan and CAT scan to see how it's worked. Got to be good news right? It's about to be the holiday season!
He's doing great! He never lost his appetite but isn't as active so he's put some weight on, but that's much better than wasting away. They check his finger and toe nails because they can fall out, but none of that has happened.
He was here last night and as he sat on the couch Isaiah sat stuck to his side, Naomi on his lap, playing with his chest hair. The dog sat on his shoulder, yes his shoulder, she has to make sure she can stick her head between him and any grandkid that wants more attention than she is getting.
When he got up to leave Naomi took off running and cut him off at the pass. She stood firm in front of him and threw up her arms so he'd pick her up.

Too funny not to share...

2009-11-04T14:28:00.004-05:00

I've had a treadmill for years. I haven't used it for a LONG time! Naomi kind of makes it impossible. I had it in the living room at one time and did well. I could walk and watch TV. When it got shoved to the back room it just seemed like 15 minutes on that thing was 5 hours! I'd much rather go walk outside.
Since my dad has been on chemo it hasn't hurt his appetite one bit! It has made him less active and the last couple times he's had blood drawn his sugar has been up. He asked if I wanted to sell the treadmill. That's my dad! He would have given me exactly what I paid for it all those years ago! He's very generous. I told him no, but we'd move it to their house and he could use it indefinitely.
So one weekend Bill loaded it up. He set it up for Dad and it was actually getting used every day.
My Mom has type 2 diabetes and she even started walking regularly. When Isaiah is down there on the weekend even he would use it! Last weekend he was putting toy cars on it. So Tuesday evening my mom decides to use it. She turned it on and then turned out the lights in the room because she was in her nightie and didn't want people driving up the alley beside the house to see her in there walking.
So, she's walking and thinks "boy, this is really set at a steep incline". So she decides in the dark to start pushing buttons to lower the incline and pushes something that makes it speed up. Faster and faster. She's running trying to keep up but at some point realized that she couldn't and she was going to fall off. Well, get thrown off is more like it. She got thrown into the wall behind the treadmill. Crumpled into a ball. Hit her chin on the "tread" part and her chin is all skinned up. Hurt her ribs She said she lay there thinking "how do I get up and how do I stop this". She worked her way up, turned on the light and turned off the treadmill.
Meanwhile dad's in the living room sitting in his recliner completely oblivious to her distress. There's an old dry sink in the room and she said the treadmill was going so fast you could hear the china clinking into each other.
Now, here is why this is so pathetic! So very pathetic! The treadmill uses a magnet as a key. You are supposed to clip one end on your clothing and the other end holds the magnet. So if something like this happens it automatically would disengage the key and stop almost immediately. I asked her about it and she said she had the clip end wound around the bar on the treadmill. So why didn't you just reach out and pull the magnet off yourself when you realized it was speeding up, I asked. She didn't think of that! She said she thought she was Jesse Owens there for a minute.

If you think Pumpkins aren't safe in your neighborhood.....

2009-11-02T19:59:00.002-05:00

An annual event by high school kids in Chagrin Falls Ohio. The "pumpkin roll". Yes, those are squashed pumpkins lining the street. Is it pitiful that I'm 35 and would LOVE to go?

Trick or Treat

2009-10-29T20:11:00.003-04:00

Isaiah ended up making little cards last night. He got a book from the school library that showed how to draw "curiosa". It had Yoda, Dracula and other creepy beings. He was tickled pink when the kids absolutely loved them! He got rid of all the cards he made and is probably upstairs starting on a batch for next year!
Mom bought plenty of candy bars. There are 4 boxes left. I think she may have done that on purpose!
Naomi and I stayed home. It's always so chilly here on Trick or Treat night and with her cold we just stayed put. Well, it's 52 outside, which isn't bad. But in the dark it's not great! One year we saw the aurora borealis while trick or treating. That was a treat! Not usual for here!
Mom and Dad were to tickled at how excited Isaiah was! He never got this excited about going trick or treating! He is just a kid that would rather give. There's nothing wrong with that!

So here's some pics from tonight.

The sign mom made and Isaiah embellished

Last minute pumpkin decorations

Isaiah's candy stand.

cute little Wondergirl Trick or Treater. Her mom and I have been friends since I was about her age and her mom was 2

Another view of the candy stand. Isaiah drug the table off the front porch and sat on the front steps. Mom and Dad are at the end of the part of town that gives out candy so they didn't get as many as when mom goes and sits with Dougie, two houses up.

Happy Halloweener!

2009-10-28T10:45:00.002-04:00

Tomorrow is Trick or Treat. Isaiah has decided he doesn't want to dress up and go trick or treating, he'd rather pass out candy.
Well the other night he had his colored pencils and a stack of index cards. I saw him drawing various Halloween things on the cards. Ghost, Dracula, pumpkins etc...
Then he turned them over and was writing on them. He said he was making them to pass out with the candy. I noticed in big writing "WINNER" on the card he was working on. So I checked into it a little more. He thought he'd have a contest!
"Isaiah!" I told him "You can not have a contest and promise a prize and not follow thorugh!". Well that didn't make him happy. He gathered them up and threw them away. I didn't realize it or I'd have saved a few because the were so darn cute! But the way people are now! You promise their kids something and you better follow though!
Mom's giving away full size Hershey bars this year. They seem to be what all the kids want. Usually she gives them a choice and even got Teddy Grahams last year for the little kids.
Of course Naomi won't be Trick or Treating this year. Thank goodness she's my 2nd child. I may have worried more about her missing out, or feeling like she's missing out. She'll have no clue. She'll be excited to see all the kids out. Well actually right now she has a mucus filled nose and it's green mucus too, so we may not even be outside in the cold.
At least I'm saving on costumes this year. :)

What A Wreck

2009-10-21T19:52:00.006-04:00

I took the following photos of our car from my living room!

Isaiah needed a protractor to finish his homework so Bill offered to run to Drug Mart. Naomi still had her socks on so we put her shoes on her and he took, he NEVER takes her along! This is the first time I can remember that he alone took her to the store, he usually just runs out the door and doesn't even think about taking her!
I was talking to mom on the phone, the windows were up because it was beautiful out and call waiting beeped in. I told mom "he is so helpless, I just sent him for a protractor!" So I clicked over and Bill said "call the police" my first thought for some reason was that Naomi had a seizure and fell in the store and was hurt or something. He said "I'm right out front of the house, someone rear ended me."I opened the front door and there they were. Naomi just sitting patiently, not crying, Bill had gotten out of the car. I was already talking to the police. As soon as I got off the line with them I ran out and grabbed Naomi out of the car and brought her in the house. She seemed fine, not crying, not bothered at all.
Bill knows it's just an accident but it's just such an inconvenience and we had just checked 2 days ago to see what the pay off was. We only have about 6 more payments, and Bill had said that it was nice to know we could just pay it off anytime if we wanted.
When the cop got there he the lady kept saying "I didn't see a turn signal". Meanwhile the signal is ding ding dinging away inside the car. Bill said a semi and other cars all went around and it looked like she was trying to go around but was going too fast or realized too late that he was sitting still. He just bit his tongue, his nerves are tied in a knot!
Luckily the rear passenger side took the largest impact, Naomi was sitting behind the drivers seat. The entire bumper and whole right panel is gone. The trunk was sticking straight up and it looked like the other side was just gone. The tail lights, everything on the passenger side is just gone. The back is pushed up into the tires so it wasn't drivable.
Thankfully I called our insurance and the lady's insurance and got the ball rolling. Our insurance pushed through everything so we could pick up a rental car tonight. Naomi has a busy day tomorrow and we can't be without a vehicle. The lady's insurance is supposed to contact me tomorrow after 10 am to fill me in on what's going on. But our insurance has already had it sent to a collision repair place they use.
She said she hit her brakes and such but there are NO skid marks, nothing. No squealing of brakes, it didn't seem like she even put the brakes on.
Our insurance said to get a new car seat because once they've been in a wreck they aren't to be used again and the insurance would reimburse us.
Well, thankfully everyone is okay. Bill's neck and shoulders are stiff. He thinks because he was looking in the rear view mirror and saw her coming and stiffened up when he realized she was not going to stop. But Naomi's silly as ever!

Thursday-Therapy day

2009-10-19T13:46:00.000-04:00

Actually Tues and Thurs are therapy days for Naomi.

Thursday her therapist were tickled pink. Her speech therapist was sitting on the floor with her and rolling a ball to the physical therapist and Naomi caught the ball said the word "ball" then rolled it back and they were so excited. She doesn't often use words purposefully. I told her speech therapist Naomi has been standing at the front door saying what sounded like ball and I finally realized it's the pumpkins sitting on the front step.

This weekend it sounded like she was saying Bill and we thought it was funny because it was like she was yelling at her Dad. Well Tuesday when Bill got home from work Naomi was sitting eating supper and when she saw him she threw out her hand towards him and yelled "BILL!". We haven't heard Dad lately, it's just "Bill".

When I was little I was visiting my grandparents and my grandma said something about my dad and I said "Old Poopyhead?". My mom got mad at my dad and curbed her language but I still repeated it :)

Cream Goatee

2009-10-18T13:01:00.000-04:00

Lehman's Hardware Kidron Ohio

2009-10-18T12:41:00.004-04:00

First try at taking a photo Naomi to excited about something but she IS looking at me. OOPS next try. Now there's something in the sky exciting her!
Now she turns her head away from us when we say her name.

Last try, Isaiah is getting tired of standing there! I need a digital camera with a faster shutter!

We ran to Lehman's Hardware Saturday. It's not that far from our house and generally I try to go through the week. I'm no tourist. There's something there I want and I'd like to get in, look around a little then leave. It was packed! Lehman's specializes in nonelectric items and supplies Hollywood with lots of period items for Western and period films. I bought a Doughmaker's cookie sheet. I should have taken a picture of the wall of cookie cutters they have. Sleighs, states, leaves, just absolutely anything you could imagine. It's funny to go to a town with no traffic light to try and find some rare item you can't find anywhere else!

It just happened to be the 1st Annual Red Beet Festival. Yeah, beet! They had beet ice cream which I did NOT try!

Well I tried!

2009-10-14T13:28:00.002-04:00

I took Naomi to the preschool where she receives itinerant services to get her picture taken. A local photography studio was there taking school pictures and I squeezed my way in to try and get hers done. My thinking was, it's a special needs preschool, surely she won't be the only kid they need to do some tricks for so they get a good shot! Wrong. Typical school photography. Sit, smile, go. She doesn't work like that.
She had me sweating before we left the house! Know what I mean! How you're trying to get something done and your kid decides now is the time to get into everything and scream and cry when they're reprimanded? Then you get so worked up from chasing and handling them you just get to sweating from pure aggravation! It's 40 degrees outside too so working up a sweat shouldn't have been so easy!
She was in the dog food, screaming, crying just ugh!!!!!!! So finally I just took her out and put her in her car seat in the warmed up car and shut the door and let her get it out of her system while I ran back inside and grabbed all I needed to. A sippy cup, my keys, my purse etc... Then I jumped in the front seat put on a Thomas the Tank Engine CD and all was better.
I worried it wasn't a far enough drive to let her nose turn back to normal color and not the bright red it had become from her fit.
We got there and one of the classrooms was already lined up and getting their photo taken one by one. I'd of liked to have asked who sent their kid in shorts and a t-shirt! That poor child! Anyway back to mine! I took her in the room, sat her down and they had something on the floor like a little step for them to get up on a little stool. Well as soon as she figured out she could tap her feet on that and make noise, it was over. She couldn't pull her attention away. I moved it and she didn't like that. The photographer did take about 4 photos and I chose the best of the worst. There was no good. No smile, she wasn't comfortable and needed time to take in this new space she'd been taken to.
This is the first time since she was 1 yr. old that I've had a picture taken of her like this. I had planned on getting them taken at 18 months and we actually went, but the guy at Olan Mills had over booked apparently and we had to wait 1 hour which sent her hunger into overdrive and she wouldn't do anything but scream bloody murder because she was so hungry. So we gave up and left and then it was only a few months later and she started Depakote then Topamax and you don't want a picture of your child when they're doped up. Plus she has never been a sit down kind of kid! We need an action shot :) Time just slipped away and here we are 2 1/2 years later finally trying to get a picture of her.
This is officially going on my list of things I absolutely will not attempt to do alone with her! This list is getting long!

A Four Letter Word

2009-10-13T06:25:00.003-04:00

It's that time of year but I'm not ready for the word snow to be said during a local forecast. The five day forecast says today will be the warmest, 51! UGH!
Very cold nights and this weekend a "wintry mix" is possible.
It just feels like 2 weeks ago I looked around and noticed how fall like it was becoming. Now, before we've even begun to rake leaves her comes the white stuff!
I love the change of seasons. But it just seems like the parts of each season I enjoy just fly by!

More X-rays

2009-10-09T19:10:00.003-04:00

Today for no apparent reason Naomi was limping bad on her right leg. Since it was Friday and 4:00 I called the pediatrician to see if they could get us in. The lovely lady from Australia answered and said how about 4:10.
TAKE IT!
We live close enough we weren't even late.
The nurse practitioner saw her. Saw she was limping and felt around. There's nothing obvious. I thought it had just fallen asleep but after more than an hour it should have been better. We got our marching orders and went to the hospital for x-rays and checked in at 4:45. They had to take someone from ER before us so we had to wait until 5:20 ish. It's awful waiting with a toddler!
Of course the radiologist isn't even there to read the x-ray, but I'm sure if there was something obviously wrong the techs would call the pediatricians office. So we have x-rays, but no one official to look at them until Monday.
The good news is she's pretty much walking normally now! So I doubt anything will show up. But I did not want to have to take her to the ER on a weekend. That is hell on Earth!

Told you I was paraniod!

2009-10-08T12:12:00.002-04:00

Last night Naomi was sleeping with me and I woke and thought
"Oh my God she's shaking! Is it some sort of weird epileptic tremor??"
I should say shaking SLIGHTLY
Guess what was wrong???
Thank gosh I'm not a real panicky person, and am too lazy to get out of a warm bed. How embarrassed I'd have been to have called 911 only to figure out what was wrong...... she'd kicked the covers off and was cold.
She had woken at midnight and was screaming. Nothing so wrong that a Thomas the Tank Engine movie couldn't cure it. I had taken off her pajama pants and changed her diaper and we both passed out sometime before 1:30. So at some point she kicked the covers off. Maybe she never had them on her. I was so out of it who knows!
But pulling the comforter over her and warming up her legs cured her tremor.
What an idiot I am!

Naomi today

2009-10-07T09:02:00.003-04:00

Naomi's babbling like crazy. Well, not really babbling, she is saying something. She just says it over and over. For instance "mom mom mom mom mom mom" or my favorite"bad bad bad bad bad dad". Last night she was staying close to Isaiah and she kept saying "bub bub bub bub" and that's what she used to call him, bub or bubby. I was worried it was the increase of ketones that was helping her speech but hurting her seizures. She was falling like a tree and stiffening up and staying that way for 5-7 seconds like it was stretching her to a certain point then would let go. On Friday when I learned that her BHB was 7.37, over a full point more than it had ever been, the dietitian and I decided to lower her ratio. Not only was her BHB high, her glucose was 51, which is less than 3 mmol/l. We want it over 3. The "okay" range is something like 50-65 so she was pretty close to the bottom. She was waking up crying and wouldn't eat or drink anything. I had read about carnitine on matthewsfriends.org and it said if after the addition of carnitine the ketones trend up and the glucose down that it can make some kids too ketonic and the 1st step would be to drop ratio. I was happy when the dietitian offered that and made all changes on Friday.

Since lowering her ratio she has waken fine and is even finishing her #1 meal in decent time. Plus I don't have to follow her around at all! If she falls she just lands in a sitting position and jumps right back up and continues on with what she's doing unfazed. For some unknown reason, I swear, her seizures seem to make her want to climb. Or else the act of climbing causes a seizure! She gets up on the dining room chair and every time as soon as you get to her there's a seizure.
An odd thing I've noticed is, she can be playing in her bed for 1/2 an hour and I can observe her from a distance, she can't see me, and I see no seizure activity. But as soon I walk in her direction and she turns and focuses on me, Boom! there's a seizure! Bill says I'm a seizure magnet because there's been times I've ran to the store and he's been home with her and saw absolutely nothing. As soon as I walk in and she comes to the gate to see me, Boom! There's a seizure! We also notice them after she's been sitting for a while, say in the rifta chair (like a little high chair) at therapy. As soon as she stands and gets mobile she has one that's almost like a dizzy spell. Or when someone walks up to her. Every one who's around her any time at all has seen it and I notice they squat to her level before approaching her because they've noticed it too!! Lots of the ones she has now could pass as a dizzy spell. There's times she's had them at the store. She tends to want me to pick her up and as soon as I do she'll have one and even if I"m standing talking to someone the other person has no clue my kid just had a seizure.
I guess most people think a seizure looks like a grand mal. But there are so many different kinds!
A girl I went to school with posted on Facebook that her son woke her up in the middle of the night because he heard something and when he got to the hall he saw his brother, sound asleep with his pants around his ankles. He'd gotten up to use the bathroom and fell asleep in the hall on the way back. My first thought was at this point that would have freaked me out! How nice to not know the fear of a neurologically impaired kid! I would have been watching that boy like a hawk fearing he'd had a seizure and I missed it.
Isaiah spends a lot of time in his room drawing, watching TV, reading and playing Legos. He's perfectly healthy but it has ran through my mind "what if he had a seizure? He's up there all alone and I'd never know!".
Paranoia, I've got it bad!

Mom Up

2009-10-06T13:58:00.002-04:00

Today I was thinking of the saying "man up".
It should be changed to "mom up".
There's a woman on a support group site who has 2 kids with severe epilepsy and after child #2 started having seizures her husband couldn't take it anymore and left. I don't understand that thinking. It's hard on 2, so if he leaves and put it all on her that is okay, why? I mean I definitely understand how hard it is to watch kids have seizures and their health deteriorate but their mom loves them no less than the dad. Why is it okay for him to be "sensitive"?
Then I was watching A Baby Story and the 26 year old Dad had to lay down on the couch in the delivery room because he was getting dizzy and felt like he'd pass out. I know how that works to! I thought Bill would pass out when I had Isaiah and he ended up leaving the room before I even had him because he felt so helpless and felt like he'd get sick. Meanwhile I pushed out a 10 lb 7 oz baby.
One thing I do that my husband will have no part of is give a suppository. I just count myself lucky he'll change Naomi at all. He has some severe ideas, I don't know what happened in his household growing up, but until I had Naomi he just really felt like a man shouldn't change a little girls diaper. I told him that I should have been exempt from changing any of Isaiah's if that's the line of thinking we're following. It took a while, and I think he was afraid of hearing about it the rest of his life, but he does change diapers.
Oh, well. Men have their place, they're just often not as strong as mom's in some ways.

Unsportsmanlike Conduct

2009-10-04T17:46:00.003-04:00

Visit msnbc.com for Breaking News, World News, and News about the Economy

OK, I live in an area where people hunt. Lots of people hunt! I know families where the mom, dad, kids and grandparents all get their hunting license every year. So I have no problem with hunting. There's a conservation aspect to it. If they didn't kill some of the deer the deer would starve, overpopulate and end up as constant road kill.

But this is different than sitting in a tree stand, waiting for a deer to come by and taking aim and maybe or maybe not striking the animal, depending on your skill.

I saw this story on the Today show this morning and it has bothered me. They said they set hooks out the day before. Then the 5 year old, his dad and a guide went out and found on one of the hooks this record setting gator. They used the winch to raise up the gator then the kid took his shot.

Isn't that a little like shooting a caged bear?

Picking off Tigers at the zoo?

That's exactly like leaving a fishing line laying in a pond all night then coming back in the morning and picking up the fish and shooting it! I mean that would be serious overkill, but it's the same thing! The gator was already caught! There's no aim. It's like hitting the broad side of a barn!

I know lots of folks around here would disagree with me, but 5 is too young to hunt and handle a riffle. No one could reasonably argue that a 5 year old has the decision making skills to handle a deadly weapon.
I know Daniel Boone and historical figures were hunting at a very early age, but I got news for you, we have a little something called grocery stores now. There's no need for a 5 year old to hunt. Also I bet Daniel Boone was a whole lot more grown up and had more life experience and wilderness skills than kids these days. Thankfully we have hunting laws now and limits on kill. I read Daniel Boone's biography and he killed an unbelievable amount of animals per season! He was just one man! Think of all the trappers killing that many, and it's no wonder the animals faced extinction so fast!

How's Naomi

2009-09-30T07:00:00.004-04:00

Naomi is doing o.k.
There for a while she was having some tonic seizures where she'd fall, stiffen like she was stretching out, it would last about 5 seconds then it would end. I think adding carnitor to her diet helped that. She's not doing it anymore. She's still falling because she stiffens really quick, but it's over before she hits the ground. We are constantly following her around or putting her in her play pen which is her ball pit now. It's nerve wracking! Especially when she constantly wants to climb onto the dining room table. Isaiah heard her move a chair last night and he ran to get her and as soon as he got hold of her she seizured. That happens a lot, seizuring as soon as we get to her, I mean. Sometimes it's like seeing us coming for her triggers it. Sometimes when she's being ornery and getting into stuff she knows she shouldn't she'll have a seizure when I come to pick her up and I tell her "don't try to make me feel sorry for you" :).
In July Naomi was averaging about 15 seizures a day. Now we're up to about 40 and no idea why! We upped her ratio and that just seemed to make things worse.
We took her to a gastroenterologist last week and they're testing her for celiac disease as a precaution. It's not uncommon for them to see kids with neurological disorders, they said. We're supposed to give Naomi 11 grams of Miralax a day and prilosec. Though they prescribed a liquid Prilosec which she can't take because of the carbs and her diet. I'm waiting for the ketogenic nurse to tell them what she can take.
I'm going to have to tweak the 11 gram dosage of Miralax. She's going constantly and is way too gassy. The carnitor helped her bowels a lot! So maybe she doesn't need quite so much of a boost in that departement. The GI doctor said it can take 2 weeks on Miralax to establish a routine bowel movement.
I took her yesterday for bloodwork. They drew 4 vials for testing for celiac disease. I also called our dietitian and said I wanted her BHB (ketones in blood) tested and her glucose. For some reason she doesn't want to eat in the morning. She wakes at 6:30 and will not eat until 9:30. She needs to eat before that! Her ketones have been staying high and I want to make sure they're not too high in the morning. She's cranky also.
My mom is diabetic and I went to her house while she and Dad were gone and found her meter and tried to test Naomi's glucose on my own. It is a 2 person job! There's no way I could poke her then squeeze her finger to put blood on the strip by myself! She is way too strong. She wouldn't hold still, was screaming and just totally foul! I just put her in the car and headed home. On my way Bill called me and I told him what I tried to do and he said "can't you just take her to the pediatrician office and have them test it". To which I said "Probably, but would you want to go sit in an exam room with THIS" (insert screaming child in the back seat) "while waiting 20 minutes for the doctor to come in and see what you want!?" He didn't think so. Sometimes he'd just be better off if he made no suggestions.
So now I have to wait for the lab work to come back. The dietitian is off on Wednesdays and at another facility on Thursdays. So it will probably be Friday before I hear anything. So aggravating!

Tooth Fairy

2009-09-29T17:17:00.003-04:00

Isaiah is 10 and lost a big tooth. It bled like crazy! He immediately said "Dad! Stick it under my bed!" (meaning pillow!). Bill said " Son, remember what we told you about Santa and the Easter Bunny? Who do you think is the Tooth Fairy?"
Isaiah says "Sissy? Papaw? OOO I'd love to see Papaw in a pink tutu and tiara! Let me guess Dad, you're just gonna give me money. Right?"
Bill gave him $5.
This happened on Saturday. The same day my Dad was picking Isaiah up to spend the night and go see Cloudy With a Chance of Meatballs. Which they really liked.
Sunday evening Isaiah was unpacking his bag from his overnight stay and flashed me a wad of bills.
"Where did you get that money?" I asked
"From Papaw and Grammy." He says
"How much did they give you?" I ask
" $15" he tells me.
"Is there a gold filling in it? What are you doing "shopping" your tooth around?" I say.
Later I call my dad and say "There's been a bit of inflation in the last 30 years. Since when is a tooth worth $15?!"
My Dad started laughing then told me that Isaiah showed them the tooth and told them his Dad gave him $5 and Papaw told Isaiah that he wasn't about to be out done by Bill. So Papaw gave Isaiah $10. Then later my mom gave him $5. I'm not clear whether she knew he'd already been paid twice for it or not.
Anyway, it ended up being a $20 tooth!
I only remember getting coins for my teeth!
He may be a slow reader and writer, but I think he's aced Economics!

My Investment Has Grown

2009-09-28T14:46:00.004-04:00

Bill and I married 12 years ago.

Since then he's gained over 50 lbs.

He needed that 50 lbs. though! He's 6 ft. tall and only weighed 150 when we married and was so skinny you could see his backbone and ribs. He says he had a "6 pack" back then. He's wrong! It was just his ribs :)

This was his dinner Friday evening. Not JUST this, he had sides and then a slice of Mt. Dew cake for dessert.

That's a 12 inch plate the Porterhouse steak is sitting on. It was huge and he ate it down to the bone! I mean wolves leave more meat on a bone!

He's still slim. No one would call him fat.

Some days I hate him for his metabolism!

But my investment has definitely grown

Where I live...

2009-09-24T07:19:00.004-04:00

I was taking a photo of Naomi by the front door and noticed after I took the photo there was a buggy in the back ground. I must have deleted that photo. I took a few others because the buggy stopped to talk to the Amish man walking down the street, so I had time to take a few.

So Here's proof, I live in Amish country. I don't know what was going on but from about 6:30 Saturday morning and through out the day there just seemed to be buggy after buggy. The photo of Naomi with the dog on the arm of the couch looking out the window shows how much our dog hates buggies. Well I don't think it's the buggy she has a problem with it's the horses and the sound their hooves make going down the road. Our dog is 13 lbs. I don't know what she thinks she'd do to the horse if I let her loose!

He Can See Clearly Now

2009-09-22T19:35:00.001-04:00

"When I go back to school tomorrow, I'll be a whole new man."

- Isaiah

My Neck of the Woods

2009-09-22T14:26:00.003-04:00

Apparently a local farm was featured in a New York Times story about Haycations. I thought I'd post a link to the farms website because it tells a lot about our area. http://morganfarmstudios.com/
This week is the Ashland County Fair. In true fashion, it's humid, rainy and cool in the evenings.
It's just not fair week without some mud!
I asked Isaiah if he wanted to go to the fair one evening and he said "why? You won't let me ride the rides anyway."
No I won't. Every year there are stories about kids electrocuted on Ohio fair rides and such. So sorry but I'll pass on putting my kid on a ride put together with rubber bands and bubble gum.

More blimp!

2009-09-20T14:32:00.002-04:00

I told you I see the blimp frequently! I spotted it again today while driving home from church! It was at a distance from me, not directly over head and it's so much like a whale in the sky, the front is slightly up, then the back. Then it levels out. It made me think that maybe it would make me a little nauseous to be riding in it.

A Little Verbal

2009-09-17T10:38:00.002-04:00

Last night Naomi was fussing about who knows what. Bill stood up and headed towards her going to the stairs. When he got near her Naomi stuck her hand out as in "stop!". Then she said "No Dad!". Bill turned and looked at me and we both smiled then started laughing. She never puts words together like that. Also at this time her vocabulary is pretty much only no, yeah, Dad, Mom and she often squeals with happiness.
She, and the rest of us, has had a cold all week. Who knew so much green mucus could come out of one little nose!
Last night I commented that she has been so good humoured lately. She's just been a real joy. She smiled a lot and wants picked up to be near us. I think the dog would disagree. She almost hunts that dog down, just to pull her ears. This morning she walked in the kitchen, went straight to the dog kennel and reached in and just put her hand on the dog and made a sound like "awwww". She's so excited to see the dog every morning.
Speaking of the dog, I better go get the mail. The mailman left a box on the front step and it's worrying my dog!

Are You Smarter Than My 5th Grader?

2009-09-14T21:03:00.000-04:00

Isaiah had his first Math test. This is what his study guide said.

Secure goals
*Draw arrays to model multiplication
*Know multiplication facts
*Identify even and odd numbers
*Find the factors of numbers

Developing/Secure goals
*Understand how square numbers and their square roots are related (I learned this in 9th grade)
*Identify prime and composite numbers
*Use a divisibility test to determine if a number is divisible by another number

Beginning/Developing Goals
* Rename numbers written in exponential notation (I had to Google this!)

Beginning Goals
* Find the prime factorizations of numbers (I had to Google this one too!)

A Trip to a rural store

2009-09-14T12:15:00.004-04:00

Naomi and I dropped Isaiah off at school then made a quick trip to a bulk food store in a rural area outside of town. We first stopped at the hardware store and when I got to the door an old farmer was sitting there b.s'ing with the clerk. He jumped up to get the door for me but I beat him to it. After I got my 2 small bags of dog food and dog shampoo I put them by the register and the old guy jumped up, he was going to help me get my things to the car. I thanked him but was able to get it myself. It all fit in one little plastic bag :) So nice of him though. His politeness made my morning!

Then we went to the market. It' a place with bulk items and an enormous deli. By enormous I mean it! Like 7 types of bologna alone! The cheese! I know they have over 40 different types of cheese. Last week when we were there I bet there were 50 cars in the parking lot! They were swamped. I asked the girl who checked me out if they were always so busy and she told me that Monday mornings are slow until lunch time then they're busy the rest of the week. I ran into her today and told her she was right! Monday is the time to go! There was only one other car in the parking lot when I pulled in shortly before 9 a.m. They opened at 8. I took a few pictures on the way there.

An Amish "pickup"

The front is a buggy the back is a stainless steel bed, just like a pickup truck.

An Amish School

Photo taken from the parking lot of the market.

Notice the bikes propped against the backstop of the baseball field. There are 3 such baseball fields in about a 1/2 mile stretch of road!

Front view of the Amish school taken from the main road.

Just a view of the state route I take to get out here. Amish farm in the distance.

I hate taking pictures of Amish. I feel like such a tourist! Not to mention I know it's against their religion. Other's know too but persist. You wouldn't walk up to a Jewish man and yank a Yamikah off his head! The Amish kids are fine. They haven't joined the church yet so it's not such a big deal. But about that I feel, would you want strangers coming up and taking photos of your kids? Most English people (meaning us) would call the law. So if I want a cute photo of an Amish kid, I buy a postcard.

Mr. McSquinty

2009-09-12T05:54:00.002-04:00

Last weekend or so, my mom mentioned that Isaiah seemed to be squinting a lot. So I watched him and didn't see it. I thought maybe he was doing it out of habit, but I tell you I did not see him squinting over his school work. I planned on making him an appointment with an Optician anyway but with all the calls out for Naomi's medicine and her therapy, plus starting even more therapy this past Thursday, I just never made the call.
So yesterday the phone rang and his school's number came up on caller I.D. My first thought was that they were sending him home because he's had a runny nose all week and a case of H1N1 was confirmed at his school and I thought maybe they were overreacting and sending anyone with the sniffles home. It ended up being his math teacher. He can't see the board and she's had to move him way up front and he is squinting. I told her I was aware and making him an appointment. She had told him to tell me but that hadn't happened. He doesn't want those "disk thingys that they put in your eyes". Contacts. I told him he'd probably get glasses if anything. He argued that he doesn't need glasses because he tried on his Grammie's glasses and couldn't see a thing. I had to explain that every one's glasses are specially made for them.
I'm wondering why no one ever picked up on this before or if it's something new. I'm hoping it will help him with his reading and writing also.
So today at 10 that's where we'll be. Getting a vision exam. Getting some answers.

One Flew Over the Cukoo Nest

2009-09-09T20:22:00.002-04:00

This flew over my house on Saturday. By over my house I mean BARELY seemed to scrape by. It's amazing how low they seem to fly! I ran to get my camera. The neighbor lady was watching Naomi swing on the swing set and I moved as fast as I could. But as I got to the back yard the neighbor said it made a turn and headed west and was out of sight. I've seen the blimp a lot. But every time I get excited! I grew up near Rt. 30, the Old Lincoln Highway and it follows that route from Akron to where ever it's going and so I grew up seeing it float by. Still I love it!

What's in a name?????

2009-09-08T20:26:00.003-04:00

You know when you name your child it's like they grow into it. You just can't imagine any other name for them.
Isaiah is just Isaiah, plain and simple. No other name would fit him. He's not a Mike, Joe, Phineas. He's an Isaiah!
Naomi is the same. We do call her Sissy a lot though. She even got mail from the dentist the other day that was addressed to "Sissy Keesee". I knew they took note of nicknames. I didn't know they used them for the mailing list.
The other day at Walmart there was a little girl who was all over the place. Loud. Running. Rude. All that and more. Her father told her to act like she had some sense and guess what this unruly child's name was.......... Serenity! I am not kidding! I swear that's what I heard them call her!
I wonder if they feel the same about her name?
Speaking of Walmart check out www.peopleofwalmart.com . A cousin sent me a link and I'll be darned if our local Walmart wasn't on page 13. The car with cats glued all over it is "Catman". He does live up to that name! His car is covered in cats, not stickers, all different forms. Ceramic and plastic all bolted or somehow glued to the body of the car. The horn of the car "meows". In the winter he wears a knit hat with a stuffed cat sewn on top.

When it's not so bad to have a Ketokid

2009-09-07T12:42:00.002-04:00

It's not so bad to have a child on the ketogenic diet when...
you're in the drive thru at the bank and the teller sends out a bite size candy bar for the cute little girl

you go through a new coffee drive thru in town and they send out a sucker for each of your kids. Big brother loved that!!!

My favorite happened today... driving through Starbucks for a Pumpkin Spice Latte and they give you 2 good size samples of cranberry nut scones, and it's just you and the kid who can't eat a bite of it.

I must add, she's totally unaware of what she's missing. Were it Isaiah he'd unbuckle his seat belt, jump the seat and wrestle the scone out of my hand!

Happy Labor Day!

2009-09-07T07:09:00.000-04:00

The Sound of Music

2009-09-06T07:00:00.002-04:00

Last night The Sound of Music was on television. It's one of my favorites. I remember waiting for it to come on t.v. when I was little. It seemed like once a year it would be shown special. Now I own the movie, but rarely watch it. It's so long!
Well last night I guess I was feeling a bit cynical.
When I watched it all I could think is "that would never happen in real life".
Like when Maria goes in to talk to the reverend mother. The nun breaks into Climb Every Mountain. Can you imagine going in to talk to your boss and he breaks into song like that?!
There's also the scene out by the gazebo where Maria and Captain Von Trapp are professing their love and it's getting awful steamy! They're rubbing their cheeks against one another, kissing. Then she breaks into I Must of Done Something Good. UH, way to kill the moment Maria! I know she was going to be a nun, and may not be too worldly about men but my goodness! Why not just force him into a cold shower!?
The scene where Maria comes back home and the kids had been to try to see her but were turned away... They decide to sing A Few of My Favorite things. Then here she comes walking up the lane, swinging her suitcases. This is where I must confess! If in real life I was sitting with a group and someone broke out in that song I'd find it very hard not to sing along!

Weepy

2009-09-04T11:03:00.002-04:00

Sunday morning I woke up really weepy and this Brad Paisley video was on and when it got to the part where the kids said what they wanted to be I started crying!
Then at church the preacher's wife read a letter from some soldiers the church sends packages to. She couldn't even get through the letter she started crying and thankfully someone else stepped in and finished reading it or I'd have been a puddle on the floor!
But if you have a few minutes check out the link. If you're in your 30's you'll get a kick out of the updates in technology mentioned.

A Happier Anniversary

2009-08-30T19:15:00.002-04:00

Twelve years ago today, August 30, 1997, Bill and I were married in Sevierville, Tennessee right across the street from the court house and a statue of Dolly Parton. Time has flown by!

We look so young! Bill was malnourished, my how times have changed!

I was only 23! My cousin made the bouquet and I still have it.

GYM

2009-08-27T20:46:00.000-04:00

Isaiah had gym class yesterday and he asked me "mom, how are you at push ups?"
That is so sadly hillarious I just can't tell you!
I told him "Ha, ha, ha, ha, ha". I can't even do push up bras anymore. I'm beyond that!
He said he got out because "It's strike one, strike two, strike three, you're out". I guess they have to do push ups and that's what the gym teacher does when they can't complete one.
To that I answered "OOOHHHH hurt me!"
I mean seriously! What is the gym teacher thinking here? Isn't the kid that can't do it the one who needs to keep doing it?
Do you think if you told me to drop and give you 20, that when I tried 3 times and couldn't do it that it would at all make me feel bad that I had to quit. Not quite!
Hello! I am the kid who lost on purpose during high school badminton single elimination tournaments. Thankfully my best friend Julie was in my gym class and she was as much as a gym class underachiever as I was! I mean seriously! It's badminton! Do I want to keep playing or go sit on the bleachers with my best friend and chat for the next 5 weeks? HMMMMMM!
Looking back I was way too smart for my own good and was genius at getting out of doing things! Besides, who remembers who won that tournament anyhow?!

How we celebrated

2009-08-26T16:51:00.003-04:00

This is how we celebrated Naomi's crappy anniversary.
First, I colored my hair. My roots were out of control and I've decided I'm done getting it colored. It just grows too fast and I don't have time to go get it colored constantly.
Then we went to where I get my hair cut because I thought I had a 10:30 appointment. I didn't. It's Friday
Then we came home and I made Naomi's 11:00 meal and she ate it up, no problem.
Then about 11:30 or so I put her down for a nap and I laid on the bed to read. I could hear her belly churning from 8 ft. away.
She woke up early, about 12:30 so we came downstairs and she wanted to sit in my lap. So I held her. She threw up on me.
I waited until 1:00 and called the pediatrician's office to make an appointment. I called them yesterday for an appointment. Called them back to move that appointment back an hour. Then called them this morning.
I was trying to get an appointment because I'm afraid Naomi's has a blocked bowel. She's not going poop at all like she should and last night a bit of a "plug" came out and she felt so great. So this morning when she felt better I just cancelled the appointment thinking everything was going to start moving as it should. Then she vomited and I was afraid that the plug was just the tip of the iceberg and so I called the pediatrician back. They probably think I'm nuts!
The doctor said it wouldn't hurt anything to do an x-ray so we went to the hospital for x-rays. This all sounds great but let me add. Our doctor appointment was for 2:30. It was just before 3 when she came in and so I had been in a small exam room trapped with a screaming child for about 15 minutes. A screaming child who was mad and was biting my shoulder and hands, and trying for my face. She just wanted out. Then she figured out how to open the door and when I closed it again, she took it up a notch. I was so happy to see the doctor.
The hospital got us checked in and we headed to x-ray where she was actually happy for a time to be in that waiting room. Then we went to do the x-ray and she had to stand in front of a board. Then lay on a table. Two x-rays were to be done. They checked them before we left and the standing one was missing half her side. So we sat her on the table and took it that way. Oh joy ,what fun that was.
Now it's 3:30 and she was supposed to eat at 3 so that's part of the tantrums. We got in the car and some idiot was pulling out of the hospital in front of me (probably a Dr.) and he throws his van in reverse! Hello!!! BEEP BEEP BEEP. I was laying on my horn. Where did he think I was going to go? There was a car behind me! I came home, thankfully it's maybe a mile away. When we got home outside waiting was Papaw and Daddy so of course she starts with "HEY HEY HEY" all happy to see them.
I told Bill to get her out of the car and I ran in the house and fixed a quick hot dog and fruit meal, the quickest thing I could think of. Isaiah asked me something about corn and didn't hear my reply three times so I sort of raised my voice the 3rd time I answered him and he cowered and I told him sorry but my nerves are SHOT! I can actually feel my arms quaking I'm so stressed. Now Naomi wants to be all lovey and get up and down off my lap and I just feel like a nice glass fence about 3 feet around me on all sides would be great for a while! Plus some sound proofing.]
I had the choice of either staying at the hospital and waiting for the x-ray results (No chance in hell that was happening). Or waiting for the radiologist to read them then he'd contact our Dr. and she'll call me later (Yes, please). So that's what I'm waiting on now. Actually as soon as I wrote that the Dr. called. There's no blockage but there is a lot of poop in there. It's below the colon so a suppository my be more effective. She also told me if I had to I could go up to a full 18 G dosage of Miralax if needed. That's an adult dosage. If that didn't work I don't know what would. If you've ever taken Miralax you know what I mean! Well I better get off here, I've got a suppository to give.

Crappy Anniversary

2009-08-26T11:36:00.001-04:00

Today marks exactly 2 years of daily seizures for Naomi.
I think in all that time she's had 3 seizure free days.
Hopefully one day we'll be on the other side of this monster and be celebrating 2 years of being seizure free.

My Daily View

2009-08-24T17:28:00.002-04:00

This is what I look at pretty much all day long

The diet has calmed Naomi. Instead of being this little ping pong ball, moving all over the house all day long, now she wants to be on me. Close to me. Very close. She's even taken an interest in my eye lashes and eye brows. If I could just get her to tweeze my brows!

Here's a photo that shows all her hair! I don't leave it down often but here it's got 2 little pigtails on the side then the back is all down. It lands at the bottom side of her arm pits.

I must also add this. As I write Bill is sound asleep on the couch and it made me think. In this house it's not "You snooze you loose". It's "You snooze, you run the risk of being beamed in the head with something". Naomi woke him slightly by tossing the remote at him.

Book Report

2009-08-22T14:24:00.003-04:00

I hated book reports in school. Thankfully I was an artful cheater who used the same book report for several years and could read a book cover and come up with a pretty convincing work. I wasn't one of those dummies who tried to do a report on a movie that had been made into a movie, such as Annie.
My love of books didn't bloom until after school when I could read what ever I wanted and didn't have to pick from the school library. If I like a book I am compelled to read every book ever written by that author.
I just finished reading the best book I've read so far this year. It's called The Crowning Glory of Calla Lily Ponder by Rebecca Wells. She also wrote The Divine Secrets of the Ya Ya Sisterhood, which became a movie.
I loved this book. There are so many little words of wisdom. Such a loving relationship with her parents and brothers, friends.
The main character called her mother M'Dear, which is such a southernly sweet thing. The book is set in a fictional Louisiana small town and I won't give away a single thing!
One example of the little things written that are so wise is on the first page, chapter one when the main character says her M'dear taught them "not to care much what other people thought, unless someone said you were mean to them, and it was true. Then you better pay attention."
There's a part in the book somewhere where M'Dear tells her something like "good enough is good enough, don't drive yourself crazy trying to make it perfect, no one is perfect". I know people who's whole lives could have been changed for the better is their parents would have told them that.
There's also a part where she tells her to practice spotting angels every day. Meaning to tell her that there are people sent to you, to teach you something everyday.
I loved this book so much that I was trying to take a nap while Naomi slept and kept thinking "If they make this into a movie, who should play each of the characters?". I've set my heart on Faith Hill and Tim McGraw playing M'Dear and Papa. Neil Patrick Harris playing Steven, and now I'll have to look though IMDB to find the others.
This actually may be a book I love so much it'd be hard to watch as a movie. You know usually the book is so much better than the movie. Except, I have to say, The Notebook. I liked the movie way better than the book. Probably because I have this totally inappropriate crush on James Gardner.

The Last Weekend

2009-08-21T19:23:00.004-04:00

This is the last weekend before school starts and I am really hating it.
Even though Isaiah could stay in his room building Legos all day and only come down for lunch or to watch his sister, I'm going to miss him!
I hate sending him to school. I really really hate it!
I just remember the feeling of who will I sit with at lunch, who will I play with at recess. I just hate that. He thinks he'd love to be home schooled, but both of us could turn into hermits very quickly! He and I do not need a lot of interaction with the outside world.
He's spending his last weekend with his Grammy and Papaw. He's pretty much got free reign to go to their house any time it's available to him. Since Dad got sick I just really feel like he can go when ever he wants! He can spend as much time as possible with them.
You should see what all he takes. A rolling back pack with his clothes, a basket with a big stack of drawing paper and about 50 pens, an old diaper box with Legos and a big stackable plastic storage drawer full of more Legos. They're only like 10 miles away. Sometimes he even takes his PS2. Oh and the movies! He plans special weekends. Different themed weekends. Spiderman, Batman, Indiana Jones or Star Wars. Or Grammy's favorite Pirates of the Caribbean. She just loves Johnny Depp.
Oh well, I guess growing up is inevitable!
Summer just flew by! He's gonna be a 5th grader!

Charlie and Lola

2009-08-16T06:47:00.002-04:00

Naomi woke me up pretty early today but I don't mind. When we wake this early it is the only time I get to watch Charlie and Lola on the Disney channel. I love this show. These little kids have English accents and Lola is so cute. It's really sweet because Charlie is the older brother and so patient and kind to his little sister. This clip is a whole episode. Watch long enough to hear the accents though. Charlie always starts the show talking about Lola. It's sweet.

Going Bald

2009-08-15T07:33:00.003-04:00

My dad's hair was falling out because of the chemo so he had it all shaved off yesterday. Isaiah thinks it's hilarious. Because my Dad still has a lot of body hair Isaiah told him he looked like a bald gorilla, which made Dad laugh.
When we got home from Cleveland yesterday I talked to my Dad and he sounded a little sad and I told him what I'd seen at the clinic.
When we walked into the clinic yesterday there were two girls who were maybe 13, if that. One girl had a scarf wrapped around her head, obviously chemo had done a number on her hair too.
I told my Dad he's lucky to have kept his for 60 years. After seeing that girl and how she's spending her summer vacation how can you not take a break from worrying over the side effects it's having on a 60 year old who refuses to quit working even though it's wearing him out. He did finally talk to a supervisor and ask if he could be excused from working the 10 hour days and only put 8 in. Of course they agreed. They would have agreed weeks ago if he'd just have admitted he couldn't do it (especially in this 90 degree weather!)and asked.
Dad said he's never felt so bad as he had since starting chemo. I think a lot of it is depression and being tired. He's having trouble sleeping and that doesn't help, it would affect even a healthy person.
It is what it is. You either take the good with the bad or let the bad overtake everything without a fight. Of course that's easy for me to say, it's Dad's fight. I'm just glad he's fighting. His father died of a brain tumor. He had bad headaches and when told to go to the Dr. he'd say "why they'll just tell me it's a tumor". He was right and that's what he died of. I don't think he ever took any sort of treatment for it. Of course that was in the 1970's and treatment was archaic compared to today.
I guess because I worked at a nursing home when I was younger and saw a lot of death I'm just not scared of it. It's more of the process that's scary and it's hard on those of us left behind, trying to figure out how to go on. But go on you do, the world has yet to stand still because any one person died, even Jesus.
I think Dad will always be with me, and that's a comfort. Hopefully chemo will help and add a few years onto his life. But this whole experience has made me stop and think, and realize that he will be gone one day. Whether it's 1 year or 20 it'll be hard.

Our Routine Trip to Neurology

2009-08-14T20:28:00.003-04:00

We had to go back to Cleveland for a routine EEG and follow up with the dietitian and neurologist. I was thinking about cancelling because July was great for Naomi then some changes were made and her molar started coming in and she went down hill. I figured we were wasting everyones time and the EEG would just be more of the same. It wasn't it showed IMPROVEMENT! She's not seizure free by any means and I knew the EEG would not be normal but I am thrilled that she's taken a step in the right direction.
I'm going to tell you all this mumbo jumbo and just play along like you understand.
There was no _________ I can't think what the Dr. calls it but it's good that it's not there. :)
There was no spikes, no seizure pattern just some spots here and there. The brain activity is slow so that's why we're seeing the developmental delays and probably has something to do with the underlying cause (unknown) of her seizures.
I told the Dr. people always ask if she'll outgrow them. I feel like, if she does... GREAT! but I'm not planning on it. I'm working towards her being seizure free at some point but for now, it is what it is. The Dr. said it's not something we can predict right now.
Naomi SCREAMED through the whole EEG, from marking her head to glueing on the electrodes. She fell sound asleep, then had to be waken because the test was done. Then she screamed some more when they took the electrodes off. The nice EEG lady made sure she got the gunk out of Naomi's hair and even combed it and put it in a pony tail.
The dietitian and I decided to go back to a 3.75:1 ratio for Naomi's diet. I think that on that ratio she is more regular in her bowel movements and that effects a lot of things for her and her seizures were better at 3.75:1 than they are at 4:1. Plus her BHB, which is the ketone level in her blood stream didn't change one bit from 3.5:1 to 4:1 so why deprive her of those good carbohydrates!
They all thought she seemed more calm and was extremely interactive and social. Actually she tried to climb up into everyones lap. Even some guy on a cell phone in the waiting room. She's all for trying out a lap and if you're near a computer where she can tap on the keyboard all the better. She kept putting her hand out at the Dr. and smiling like "hello friend". It was sweet.
I was talking to a mother in the waiting area who had a 3 year old there who saw the same Dr. we do. She told me she took her daughter to Colorado to see a Dr. about her seizures and he looked at her chart and who her doctor was and told her she couldn't get a better Dr. So back to Cleveland they went. I knew we had a good Dr., a great Dr. actually but it's nice to hear stories like that. She also said she called and talked to Martin,( the clinical nurse we used to also work with before the diet) her daughter had 4 seizures back to back and he told her to get to the ER. She told him they were 45 minutes away and he told her GET HER TO THE ER. So she threw her girl in the car and drove to the ER and when they got there Martin was there waiting on them. That is dedication! To your job and to the patients you care for.

Shopping... not so bad

2009-08-13T11:24:00.002-04:00

I took Isaiah to Kohls to get some Levi 550s because that's what fits him best. At first I couldn't find his size so I had him try on 3 other pairs. One fit but not great. I finally found his size in 550 and had him try a pair on and they fit! YIPPEE that'over!
Bill told us to look at shoes while we were there. So that was the last thing we did. Isaiah needs 8.5 in mens. I took him over showed him the different shoes. He tends to go for the tennis shoes that look more like hiking shoes. Anyway, he saw some he liked and I said "lets see if they have your size". So I'm looking and he said "How much are these mom?"
I looked at the little electronic tag and said "$59.99"
Isaiah said "Sixty dollars for a pair of shoes!? I am NOT spending that much on a pair of shoes. I was going to tell Dad I HAVE that pair of tennis shoes from Walmart that are fine. Why fix what ain't broke!", and he walked off.
So we didn't get shoes.
I did stop and pick up a pair of jeans for Bill. Isaiah asked why we were shopping for Dad. I told him I have to buy Bill's clothes because if I don't he'll want to wait until Levi's are $19.99 again, and that is not going to happen! I told him Daddy's a little lost in how much clothes cost because he never has to do the shopping, he still thinks stuff is at 1995 prices. Like in June when he wanted Nike tennis shoes, but didn't want to pay more than $30.
Oh well, I buy his clothes and make sure he doesn't buy some tapered leg jeans. He's lost in style too! :)

Back to School Shopping

2009-08-12T09:27:00.004-04:00

Well I've gotten the school supplies.
Pencils, erasers, colored pencils, scissors, ruler, dry erase markers, red ball point pens, 5 folders all different colors with clips and pockets. This is the first year I haven't had to buy crayons or glue. Oh, I can't forget the paper towels or Kleenex, they actually specified Puff's or Kleenex.
Now we're on to clothes. I don't buy much at the beginning of the year but a day will come where he needs a pair of jeans that fit and I'd like to have at least one pair.
In case you don't know, it's Marvel comics 70th anniversary. I didn't know until a trip to Old Navy yesterday where Isaiah picked one t-shirt out of a very large selection. They also put a reprint of the original Spiderman comic in our bag.
Isaiah now has 3 t-shirts with marvel comics. We got 2 from Target but it wasn't until our trip to Old Navy that I knew something special was going on with Marvel. They kind of throw it in your face!
I hate buying jeans for him (and for me). I don't know who they make jeans for? Isaiah needs husky, but even they don't fit right. The really skinny kids have a hard time finding jeans too. So where are all the kids who actually fit into the jeans?
When I can just go to a store and buy his jeans by waist and length I will be soooooo happy! When he can go pick them up himself, I'll be even happier!

A day at the movies

2009-08-08T20:27:00.003-04:00

I never get to go to the movies. Bill and Isaiah went to see G.I. Joe, which they really liked, and told me about this upcoming movie. So for all of those who, like me, don't get to go to the movies and see the trailers for new movies.
Enjoy

Sunday School

2009-08-08T15:35:00.002-04:00

I told Isaiah that Sunday school would resume in September. He said "Um, I think I'll just stay upstairs. School school is bad enough. I don't want to have to go to school on Sunday too."
We'll see about that.

Dad

2009-08-07T08:11:00.003-04:00

My Dad had his first chemo treatment about two weeks ago.
He's still working but it's getting to him. His job is on 10 hour days plus 8 hours on Saturdays and my Dad works through his breaks! Always has. My husband works with him and takes him water and such and has tried to tell him to slow down. Even his boss has said take a break when you need to. But Dad won't let them down. If it needs done he'll get it done. I think Mom is going to contact his Dr. and get them to give him an order that says he can work no more than 8 hours a day. Maybe if it comes from the Dr. it'll take it out of Dad's hands and he can relax some.
He didn't get really sick from the chemo and actually felt a little better on days. The problem is it's just like when Naomi was on meds. Anytime anything happens it's like, OK, is this meds or is this disease? He's really emotional, maybe even depressed. He's really quick to tear up. I don't know if that's chemo or hormone treatments. I told him he sounded just like me after I had Isaiah and I wouldn't feel sad but tears would just start rolling down my cheeks and I had no control over it. He's wore out in the evenings. He told my mom he's just so tired and she told him he ought to be tired! He's 60 years old and trying to work like a much younger man!
His appetite doesn't seem to be affected. He doesn't look sick in any way.
The Clinic sent him to the heart clinic just as a precaution to be checked out and have an EKG this week. I guess there were quite a few characters there that day including an older man who kept saying "Frank is in the building". Referring to himself :)
Next week he goes to the Clinic to have a dermatologist check out a spot on his face that has caused problems for quite a while. It may be melanoma.
Then the following week he goes back for another chemo treatment. He'll go every 3 weeks. Hopefully we'll have good results.
Last Sunday in church when they asked for prayer requests it was heartbreaking! Several people with cancer, a mom with postpartum that tried to commit suicide, a family who's father had been with the same company for over 40 years and just found out the company went bankrupt. So many sad stories these days.
My cousin is about 2 years younger than me. He has a brain tumor, 2 mortgages, 3 kids and was caught in the latest round of lay offs at his job (he works with my Dad and husband).