IT's been a really long time

Oh it's been a crazy month, so crazy i haven't even come close to posting.

But here I am again!

We've all been warned about the terrible 2's but no one told me about the wild 1's.

Last week I had the perfect toddler- she ate like a champion, took one nap at a consistent time and i didn't have to yell at her once...

Those days are gone- this week I have a toddler from hell- she screams for everything, won't eat, won't sleep and changing her diaper is the end of the world.

She still is as cute as a button and a lot of fun, thank god, because otherwise I would have thrown her out ( just joking)

Oh what else is new?

I am excited to go back to school- just non-degree right now, but hopefully by next year I will be full time and working towards my Masters in Speech Pathology.

It would be good to work again, although it seems like it's so far away...

We have been without seizures for three weeks- we did add Topamax to the meds though.  That can also be the reason why her appetite  has disappeared- the big belly she was sporting has melted away.

Our trip to europe was good but exhausting....I understand now why people sell all their belongings and move to Provence- it's beautiful and peaceful and the wine makes everything even more peaceful.

Amsterdam was nice too- could probably live there, too if I had to.

One thing I won't do again, though, spend 8 hours in a plain chained to a toddler. God bless whoever invented DVD players and Sesame street but until they make a battery that doesn't die ever, I am staying home.

I spent 3 hours under a blanket on our way to Amsterdam so Madison can sleep and I think we were in the only plane ever that didn't have air conditioning. I would have jumped out of the plane if I wasn't pinned down by a one year old.

So in short our live is a rollercoaster! And we don't know what's coming after the next turn...

E

Upping the meds again

Well  i thought that may be, just may be we can tell the doctors we want to experiment and may be go off the meds since we are not sure they are doing much, but after another fit this past sunday we are instead going up half a pill. 

Her blood level of depakote had gone down probably because she grew, so they think tha's why she is having seizures again. I just keep thinking about the 3 months we had seizure free and wonder how can we get there again.

But is i am to prove that the meds are not working then i guess i can try going up the dose and see what that does.

Apart from seizures she is doing fabulous. Getting more and more fascinating every day. It always amazes me that I can tell her something and she understands me. It's so rewarding and so much fun to play with her.

Daddy's gone again. Off to Las Vegas this time. I don't think he reads my updates anyway.

Oh well, at least we'll have peace for a few days again. I hope Madison does well. she doe miss him when she is gone. So do I... but then it so much calmer  around here when he's not around.

E

What a day!

Oh God, it's been a long one! Where to start? Let's see

I couldn't post pictures from yesterday because Madison had another small seizure last night. It was kind of my fault, though. she wouldn't stop pulling the plug on the humidifier so I put her in her crib while I get ready for bed. She cried and got mad and and really angry that she was stuck in the crib. After I took her out after no more than 5 minutes she couldn't calm herself down and seized. It was only two minutes and she recovered but she was still upset and wouldn't stop crying. She cried for almost an hour until I woke up my husband at 1 am in London so she could hear his voice. After that she fell asleep and was fine in the morning.

Today started much better. We were up and all happy and then my nanny came to take her out, so i finally managed to put this house in somewhat of an order. Everything was going great until I took some Benadryl for my not going away allergies . It didn't affect the stuffy nose at all but it made me super silly.

On our way to Lynbrook to see the accupuncturist, we got off at Times Square instead of Penn Station and it took five minutes going up and down the elevator to figure out I am at the wrong station. Anyhow we made the train and got there, had a good session. Madison is more fascinated with the needles that afraid of them No reason not to be. After all the times she has been poked with needles these are probably the least painful and it makes her  calmer and happier.

We almost missed the only train back ( the ONLY for about 20 min, but i didn't feel like standing on the Lynbrook Platform for half an hour).  I ran to the station and carried her up the stairs with 5 minutes to spare.  It wasn't very clear which Platform is which and it took a good 4 and half minutes for a very unhelpful old lady to tell me that I have to be on the other side.

So carry her back down 3 flights of stairs and up another 3. I tell you the stroller and her weigh over 30 pounds but I did it in the 30 seconds I had.

So we made it back and she is now napping ( off schedule I know) but daddy is coming tonight so she can stay up a little bit later and see him. she did miss him a lot.

And finally the silliness is wearing off, the allergies are still going strong though!

E

Happy anniversary

can you believe it's been only two years.

another fun day

WE had another long day full of silly little stuff.

Madison was again happy as can be. She visited the Children's museum with her nanny and only slept for 40 minutes  in the morning so she is now passed out in the bedroom. Yes, it is 5:41 and I wonder how long she will sleep and would that interfere with her bedtime.

I managed to clean  one room up  and made some cupcakes. Of course running out to our playdate before the cupcakes were cool I stuck the icing in the refrigerator and it  turned back into very sweet butter. I should have known better after i spent hours bringing the butter to room temperature.

Meanwhile my nose won't stop running, I don't even know if it's a cold any more, it feels more like very annoying and stubborn allergies.

Madison had a blast at her friend's Lance house. I know they are very young but they were actually playing with each other. They followed each other, took the other's toys, teased each other and all other fun stuff. It was actually a lot of fun to watch them interact.

That's why she  is so tired now so I had to let her sleep even though it's late.

I don't have any pictures of the playdate b/c i forgot the camera but here are some pics from today.

E

I keep forgetting ...

i always forget that the pictures upload from bottom to top so the order of appearance is upside down.

E

what we did today

Since Daddy is gone on a business trip I figured we can keep a picture log of Madison ao he can see what she did that day.

so here we go in order of appearance: we played home  with our toys and drank some milk. 

After Sonia left we went to Dunkin Donuts where we had a snack ( don't worry she didn't have donuts, but i did nurse my cold with a hot chocolate) and then we froze our butts off in the park but we spent 10 min on the swings and Madison was delighted.

She only had one 1 hour nap today. Normally I'd be worried that she hasn't slept enough  but after  her acupuncture/ acutonics treatment on Saturday she has been sleeping so much better  at night and has been so much happier and energetic during the day I think she can go down to one nap a day. Of course she needs more than one hour but we are working on that.

E

Growing up

As Madison grows up so do I. Having her around makes me feel like a child again most of the time but she teaches me so many lessons.

We had a rough weekend. Went out to Long Island to do so we shopping and stayed late so we spent the night over my brother in law's house. Madison had 3 seizures that night. she's never had that many in such a short period of time.

At first i thought I had overdressed her and she overheated again. But after the second seizure we knew something was wrong. 

Problem is we still don't know what is wrong. She has been very tired and lethargic for the past three days. She can barely walk that;s how weak she is and she's very needy.

I love the fact that snuggling makes her feel better but I don't have my hands free for a minute. My house is a disaster. But then that's nothing new, anyway.

My lesson this week...something i have had suspicions for a while now.

Doctors don't know much more than we do. I do wonder why they spend all that time i medical school paying the big bucks so they can add MD to their name.

Apparently it makes them feel all mighty but the truth is they are still human.

No offense to doctors I do like most of my doctors. But when it comes to my little girl they can't give me any answers and that drives me crazy. We've been talking to the neurologist's nurse and it's all a guessing game. The most they can do is order another EEG. I don't think Madison will appreciate being glued to a thousand wires for the 5th time so that they can tell me that everything is they it is supposed to be. Getting the glue out of her hair isn't that much fun either.

Meanwhile we saw her pediatrician yesterday and according to him she is the healthiest child alive. He did tell me she has two molars coming in. Do you think I didn't now that?

Poor child has been in pain for a couple of days now, all drugged up on Tylenol and Mortrin so she can sleep.

I am going to try some accupuncture and acutonics for her. The lady may not have an MD in her title but I am hoping she might have some more insightfulness and healing wisdom.

Or who knows it may just be another lesson learned.

E

just some thoughts

Madison had another seizure last night, in the bathtub again.

We think she may overheat and the spike in core temperature triggers a seizure. The doctors said it was possible and told us to limit bath time.

But it is something else that is bothering me.

My grandfather passed away this weekend and my mother told me that he had  low blood pressure and because of the lack of blood in the brain he had brain atrophy.

Now that made me think. Since the low blood pressure apparently runs in the family- i have and so does my mom, Madison could have inherited it. Can her low blood pressure cause or trigger seizures. If there is not enough blood going into the brain, there is not enough oxygen delivered. Can that cause seizures that are nonepiletic? Or can it trigger the abnormal electrical discharges that cause the seizures.

The other thing I have is sudden drops in blood sugar. It usually happens late in the afternoon, or if i haven't eaten enough. Those can cause irritability, lightheadedness, dizziness. Sometimes they make me feel like my whole body is shaking- I think it really is shaking a little, but the sensation is like i am shaking a lot. It also makes my state of mind altered -like, everything becomes very vivid and I think i lose my peripheral vision. Anyway, it sounds crazy, but that doesn't happen very often.

Still it makes me wonder because i found sites that say that low blood sugar can cause seizures. 

Of course the doctor's reply to that was No, it can't be.

But the truth is that if they don't know what it is, how can they know what it isn't.

May be it is that simple and she doesn't need to be on medications that hinder her progress and god knows what else they do to her.

Just some thoughts...

if anyone knows more please share.

E

First and last

As the days go by, some go fast, some seem to never end, our lives change so fast.

During my illness Madison was successfully weaned off. she was mad at me for a few days I think, but then got over it. For a substitute she now likes to blow raspberries on my chest and falls asleep on top of me.

I do miss the tender moments of breastfeeding  but it is nice to be able to wear my old bras and not get hungry every half an hour.

Madison finally let go of our hands and took her first steps on her own  last monday. She trottles around like a little ducky- it's so cute. she would still crawl when she needs to get somewhere fast and demands a supporting finger now and then.

she seems like such a big girl now. she points to what she wants and loves to talk on the phone. This morning she gave me the phone and said "dada" like she wanted me to call him.

She has these lengthy conversations on the phone, thank god they are free.

Life Uncommon

It's almost 7 am and this is the first time I have slept through the night in over a year. I feel ready ti take over the world

It' s been quite a while since I wrote.

My life seems to be chaotic now and then. 

And then all of a sudden everything seems peaceful and blissful again.

A few days ago Madison gave me my first kiss. I was lying on the floor in her room pretending to be asleep ( so i can get her to sleep) she crawled over to me and gave me a real little peck on the cheek with sound effects and all. It melted my heart. 

Last week she did have another seizure, that time we had to give her Diastat and poor thing wasn't looking so good.

On the bright side when i broke it to my pediatrician that we are going to "delay" her vaccinations until she is stable he seemed almost apologetic that he hadn't waited longer to give her the MMR and completely agreed with that she shouldn't get any more shots for the time being.

I have been sick since Wednesday- bad fever, achy all over ( i could swear i felt my toes hurt), nauseous,   my stomach hurts, diarrhea, headache = a miserable thing. The doctor calls it acute gastroentiritis that ended with a massive migrane. I haven't eaten since Wednesday pretty much and every time i put something in my mouth my stomach makes noises  like it's doing construction.

Speaking of terrible because of this annoying disease i have been keeping away from my little girl ( oh, the torture). I sleep in the other room. Daddy and the nanny take care of her all the time. I have hardly touched her in days and it hurts.  I guess when you share every waking and sleeping moment with someone for so long  it's hard to separate. 

I haven't been breasfeeding her either, because of medications and not to give her the bug and because daddy is taking this opportunity to wean her off.  She hasn't nursed in more than a day now and only once before that. I haven't heard her cry last night so I wonder if she slept through the night. I miss her falling asleep while nursing so peaceful and so blissful. But I also want to wean her off. I want to be able to get dressed without thinking 'I can't breastfeed in this outfit'. And I want to have a few months off before I get pregnant again. YEs, I am looking forward to that.

JEff taking care of her for a few days has been wonderful. And despite the fact that my house is a mess, there are bottles and glasses of milk laying everywhere, and Madison has spent too much time watching TV I think i fell in love with my husband all over again. 

Life is so full of surprises!

E

Is hope a good thing?

Sometimes I wonder if I should waste my energy hoping.  The more I hope that Madison will outgrow her seizures the harder I get hit every time she gets another one. 

After the 3 months with no seizures I was so hopeful that we can may be stop the medication some time this year and see how she would do on her own. 

But no, that was too much to ask. 

I keep blaming myself for not reading up on this vaccination propaganda before i took her to the doctor. Can't really blame my pediatrician, assuming that he does what he believes is right. IF he vaccinates his four children then he apparently believes that this is the way to go. But I do have the right to think for myself and I don't agree.  Who do I blame?

Well if I have to blame someone, and I don't necessarily do, but I am angry. I am angry at myself for letting this slip by me and I am angry at a society that blindly accepts everything they are sold.

Do we all go and buy products because we see the shiny ads and brainwashing commercials? Yes, sometimes we do. But sometimes we also second guess and ask around for other's opinions and if we are gullible enough to do it once we don't go and buy the same thing again if we don't like it and if it doesn't perform to our standards?

So why don't we do the same with inoculations? After all the whole thing is one big ad campaign the pharmaceutical companies asked the government to do for them.

How much longer are we going to keep our eyes shut and ears deaf?

For how much longer would our kids will have to suffer the dangers of genetically engineered viruses shot up into heir little bodies?

For how long will we just stand there and let the state and federal government make the choice for our kids' health and well being? 

After all isn't that our choice? Isn't that our right to look out for our children that is being taken away right under our noses?

When was the last time that your pediatrician asked YOU should your child be vaccinated ?

So I wonder should I hope that things might change during my lifetime, or my daughter's lifetime? Or should I give up the hope?

E

Vaccinations???

After 2 seizures in two days in dawned on us that Madison had just gotten her MMr shot this previous Wednesday.

I know that many will say there is no point in blaming myself but just a it of googling will have you having a second thought about giving your child the shot. Especially if she has a history of seizures.

Apparently the measles shot alone increases the likelihood of a febrile seizures three times. The mumps shot  is also known to cause convulsions. Put them together and add the rubella in the mix to take another jab at your already lowered immunity and you have a recipe for disaster  even if you child doesn't have epilepsy to begin with. On top of that doctors like to give 20lb babies more than one shot per visit so we also got the Pneumococcal shot to prevent pneumonia.

Now up until now I blindly trusted my doctor's judgement thinking that it's better for her to get the shots than get sick, since getting sick also can predispose her to have seizures. But a little reading done a little bit too late has changed my mind. No one will look out for the best interest of my child but me. 

Most importantly I need to make sure i stay informed from al different source because the government and our doctor's  medical opinions seem to be very lopsided to say the least.

E

It's snowing...

It's snowing outside and i am sitting here next to my asleep little angel. It sounds like a perfect winter Saturday afternoon. Unfortunately she had another seizure earlier today. We were outside and i had decided not to take her Diastat because we were only going to the store and it would be impossible to give it to her outside with all the clothing she had  and in the cold.

Well I am sure that it's one of Murphy's laws that the one time you don't take a medication is the one time you will need it.

I stopped on the corner of 93rd and Amsterdam to put her gloves on. Right there and then a bunch of stupid scared pigeons dashed over our heads. Madison gave a little shriek, and i somehow knew then that she was going to have one. She arched her back and started convulsing. I started running as fast a I could to get home and give her the Diastat. By the time we got in the elevator she was already going out of it. The whole thing lasted no more than 3-4 min, so she didn't need the Diastat. It could have been that she got scared from the pigeons or that she got frustrated  that i was putting gloves on her.   Or it could have been neither of those.

She fell asleep right away and has been drifting in and out of sleep ever since.

The poor little thing. she was doing so good. IT has been more that 12 weeks since she had one. This time was the first since we started her on Depakote. I was hoping that we would be able to have her off the medicine in another 6 months or so.

I started the process of getting her developmentally evaluated. I am waiting for them to call and schedule the appointments to have the specialist come to our house and do the evaluation. She is a bright little thing and I am afraid that the drugs and the seizures are slowing her down.

E