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.

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.

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.

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!

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

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!

Sick Kiddo

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.

Something for everyone

I got a new washer

Naomi got a reading nook.

Naomi's first ever school picture

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!

Cream Goatee

Well I tried!

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!

More X-rays

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!

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!