It's been a while!

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

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

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

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

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

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

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?!

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

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....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.