Happy Birthday Madison!

Happy Birthday to my little girl! I can't believe it's been a whole year since her little wiggly body struggled her way out of my womb.
It's been a long year full of tears and joy. We traveled a lot- we visited Europe and California, Florida and Canada, swam in the Caribbean and visited DC.
Along with all the joy that comes with the little bundle we had our share of worries. We went through 14 seizures, 3 different medications,4 hospital stays and 5 EEGs. We are well acquainted with all hospital procedures and have seen the inside of the hospitals of most major cities from San Diego to Montreal( and we are still receiving bills). We are now going on 3 months seizure free and hoping that we can soon take her off the meds. And through all that she was still one happy little girl always with a smile on her face, my little warrior.
A few days ago we had a birthday party for Madison and she was the queen of the ball. She hit the dancefloor and was dancing like there was no tomorrow, she blew her candles and tried to grab them too, and loved her cake. We are having an ice cream cake for her today.

We are now taking bets on how soon she is going to walk. We have grandma down for three weeks and grandpa for next week. The winner gets a wet kiss!

Happy New Year!

E

The adventures of Madison

Madison enjoyed the wonders of south Florida

she rollerbladed through Key West and stood on the Southernmost point of the US, sailed a catamaran and went kayaking, rode a bike and most importantly watched mommy parasail. If I had a choice in that matter that would be my favorite pastime- it's like a swing between the sea and sky, so serene and so beautiful.

All that before she even turned one!

E

Happy Holidays

Hello,
from the southest and warmest place in the country.
After a couple of days splashing in the pool in Cape Canaveral and visiting grandma we are now down in Key West.

Even though it's not the same it's a little sniff of the Caribbean. It's beautiful here and most importantly warm.
Madison is having a blast. She loves splashing in the ocean or the pool, crawling and cruising around and making mischief. She will be one bug trouble maker- i can taste it already.


We took a sunset tour last night. It was really nice and windy...

She is becoming such a little person. I can't believe it's been a year already. It seems like yesterday i was introducing solid foods to her and today she is lunching on chicken fingers and french fries. I am not thrilled about her diet but have you tried feeding the spinach while you are munching a big fat french fry.
At least i know she gets her Vitamin C from sucking on lemons.

Happy Holidays to all shivering and snowed in friends!

E

Putting the fun back into life

It seems like this year has been dragging on forever  not always filled with pleasant experiences.

Although I thought i didn't need a vacation since i am not working it seems that a change of scenery and lots of sun can do miracles. 

Doing trapeze finally gave me the trill that it used to when I first started. For more that two years trapeze wasn't fun any more it was just another thing i did.  Now the fun is back. I didn't need an excuse to stop flying- my hands hurting, falling off the catcher in apron, being sick couldn't stop me.

There is a very simple reason I can't seem to find and keep a hobby- I like trying new things. That is my hobby. Not having a challenge and doing the same thing over and over again is like death to me. So windsurfing was my first challenge in a very long time. It feels so ... I don't know the word to describe it, may be liberating. IT's just you, the sea and the wind. The taste of salt on your lips and the wind on your skin. There is no other feeling like that.  I  have always loved the sea but i never knew it like this. Like all great things I only did the last day and the last hour. Now the sea keeps calling me and i will have to go back to it sooner or later.

Yes so after a very long and weary year I think Maddie's mom is happy to be just Elena sometimes.

Back to the cold...brrrrrr

Yes, we are back despite my vain attempts to be deserted on a Caribbean island forever.

We had a blast despite the fact that we all got sick and Madi is still throwing up and probably going to see the doctor today.

Oh, where do i start?

We swam with the dolphins, celebrated daddy's 40th b-day, played with the most colorful parrot who kept saying "hola", bathed in the sun, played in the pool and flew in the Club MED Punta Cana Grand opening Trapeze show( I did smooch the president of Club Med trying to give him the stomach bug we all got there so he experience it first hand), and I discovered the joy of windsurfing an hour before we left so i now want to go back so badly and do it again.

The great news is Madison has been with no seizures for more than 2 months and through 2 pretty major sicknesses so i am hoping that soon we can take her off the drugs. Hopefully i am not talking too soon.

And here the pictures say it all!

Peace

E

Exciting news

My little baby is getting ready to walk.... (tear)
Daddy put her on the walker this morning and she was running down the hallway. It was so cute. she is still very wabbly but enjoys wabbling around.
Yesterday we went to visit our friends Peter and Margaret and she climbed all the way up their staircase. She is getting to be so much fun and it's so exciting to watch her do all these new things. She began waving a couple of days ago and although her timing is kind of off- she just waves whenever she feels like, like in the car she waves to herself in the mirror- it is still a wave.
On Friday I left her to take a nap in our bed and half an hour later when I went to check in on her i found her behind the door trying to come out. She had climbed out of bed- she knows she has to turn backwards and drop and was trying to come to us.
And here is how she helps me cook.

E

long silence...sorry

I guess her seizures were making me write more and now that we have been seizure free for over 5 weeks there aren't many exciting things to write about.
Madison is doing really great -today she was playing with her computer ( not a real one - it plays kid's songs) and stood up all by herself and started waving and flapping her hands- it's the longest she ever stood on her own. Other than that she is happy to be feeding herself and go mama dada all day long.
we took her to the Big apple circus last thursday and she really enjoyed it. she was very interested in the horses,loved the little doggies running around and clapped after the trapeze act.
I am starting to pack for our vacation and really looking forward to it. Club Med sound like the best deal right now because we can leave her in the baby club and go do whatever. I am really determined to try windsurfing even though my husband is trying to convince me it's way too hard. Sand and water sounds so good.....
I have also discovered the joys of baking and enjoy making cakes and cookies...and eating them too.
Madison's getting really grumpy so i have to go


E

Halloween...

some costumes worked better than others as you can see...
Madison enjoyed her first Halloween party but was too wiped out to go trick or treating with daddy and napped instead.
Thank you aunty Jen for my first ever Halloween card.....it tasted so good!

E

Happy halloween

and happy 3 weeks without seizures!!!I guess i haven't written in a long time because nothing interesting is going on.
Madison is doing great and very excited about her first Halloween party!
See for yourself!
Yes she likes getting into things.

Pics from Halloween coming soon

E

2 weeks seizure free

We've made it for 15 days now with no seizure!!!
We spent the weekend ,however, cruising Epilepsy conferences. We've gathered a lot of useful information and met some great people. It's good to know that so many kids have normal lives and do great despite the epilepsy. Still hoping that Madison will outgrow it but I'd rather be prepared to deal with school issues if she doesn't.
She loved the epilepsy dog we met at NYU today. Her name was Carly and she enjoyed licking Madison's face.

E

First words

Amidst all the blabbing and talking Maddie has been doing she made daddy very happy this morning by saying DADA.
Not sure she knows who she is referring to but she repeats it after us and we even managed to get it on camera. she is also beginning to wave- all very exciting things.
she is also getting better at balancing and walking- she would stand for half a minute on her own until she realizes and then squats down.
My little girl is not so little any more.
And it was the first time yesterday that we left her at night. We had to attend Jeff' award dinner and she stayed home with our friend Jean Marie. she did great until she had to go to bed and screamed for her dear life ( she does that with me too). And honestly I wasn't so freaked out and had a good time. It was nice to be all dressed up and go out. And then I was thinking that to be at the AP chairman awards was quite an experience.

E

New Medication is working great so far

Depakote is working good now but I am more happy that we are aggressively lowering the Trileptal and she will be off of it by the end of next week.
She is a completely different person- talking so much more and standing better and in a better mood. I almost forgot what a happy child she was before the Trileptal. She is sleeping better- waking up only 2 -3 times a night and not crying, not having nightmares. and the best news of all- we've been seizure free for over a week now. since we started the Trileptal this is the longest we've gone without one.
Not only did the damn medication give her seizure but I feel that it slowed down her development. She will be fine now that we are taking her off.
Madison had a busy week- we did a half an hour EEG last weekend, did bloodwork on Wednesday and did a 24 EEG Thursday Friday.
I am still working on getting the glue out of her hair.
She did great the funny hat didn't bother her at all and I think she wil make a great mummy for Halloween.

Groundhog day...

I feel like I am stuck in a time loop where every day is the same like the previous one and everything achieved one day is lost the next.
WE went for a half an hour EEG which most likely showed nothing. She was feeling better all day saturday and sunday until last night when she started throwing up again. Daddy wasn't very trilled since this time he was on the receiving end but calmed Madison down with nice hot bath. We ended up going to bed without knowing how much medication she had taken. She seems much better now but is still running a fever.
I just feel so overwhelmed. I am lost in this chaos where everything is fine one day and the world just tumbles over me the next. Nothing gets done, there is nothing to really look forward to except another day just like this one.
I am sick of her not feeling well, of me forcing medication down her throat or pushing it in her butt; of being afraid that she might have a seizure and not being able to tell me what is wrong with her.
Is it ever going to end?

E

New Medication

After 3 seizures in 2 days we are switching to Depakote and weaning off the Trileptal.
Madison has been sleeping literally in my arms so I can feel her if she seizes. She woke us up around 2am on Thursdaymorning and around 6 am on Friday. The yesterday she had another one around 5pm. They were all short- 3-4 min and stopped on their own. After yesterday morning however, she was awfully quiet. she seems to have regressed back to simple sounds she was making when she was 4 months old.
WE started Depakote yesterday and she seems better- she is at least back to her usual chatter. And she has a cold. How much does this kid have to go through before she is a year old.
Today we are doing another 24 EEG. We won't stay at the hospital but she will be hooked to a lot of wires.


I will keep updating

E

Epilepsy Petiton

if you can't view the sticker please go to http://www.epilepsyfoundation.org/petition/index.cfm and sign the epilepsy petition to to support efforts that end discrimination, improve access to care programs, and increase funding for epilepsy research and programs.

Thanks

E

Alone

So I braved leaving Maddie alone with our new nanny yesterday. Strange feeling going out without pushing a stroller, carrying a diaper bag full of all my earthy possessions and scurrying back not to miss a nap. Very strange feeling - to be actually alone with my thoughts and worries and just strolling down the street like I have nowhere to be. I had forgotten the feeling. I don't really miss it. What I miss is her little wiggly body and sweet milky breath when she is not with me. If you can't tell I have a very serious case of separation anxiety. The nanny was here for 3 hours.
My child however, has no clue what separation anxiety feels like.
Sonia- the nanny- said she was giggling and laughing and playing in the sand in the playground. She wasn't even excited to see me when I saw them in front of the building. It breaks my heart.
But as JEff said do I really need a super duper clingy child. No!
Madison loves people- her daddy's girl.

E

some happy moments

We've had a couple of good days with no seizures and no trouble.
Here are some of our happy moments

E

Happy new year and all..

Not exactly the great start I've imagined but a new year it is.
We started it at the hospital- this time just visiting. Grandma had a minor stroke and had to visit the hospital and we got to se the inside of a hospital without being hooked to beeping machines or poked. Madison scored a teddy bear as soon as we got in. She has learned how to work the medical staff to get stuff.
WE had a grand time with Maddie's cousins. Visited the neuro on wednesday and decided to another 24 hour EEG this time at home before we decide whether to keep increasing the TRileptal or try another medication.
I personally think Trileptal is not the drug for her b/c of all the side effects she gets- nightmares, trouble sleeping, drowsiness, grumpiness and who knows what else that we don't know about. On top of it all it doesn't seem to work- she had a seizure at 5 am this morning and then slept for hours b/c of the Diastat. She got a flu shot yesterday so that may have helped trigger the seizure although I gave he Tylenol right away after the shot and again before bed.
We are increasing the drug tonight so I expect a fun weekend that will end up with throwing up on someone. Daddy is leaving on sunday for CA so it will be double the fun.
I managed to sweet talk a win pack of Diastat from a nice CVS pharmacist. Duane Reade always has to order it so we wouldn't get it until Monday. I said let's try CVS and they had one. They weren't supposed to give me just a partial order (controlled substance) but Madison gave her big droopy look and they caved in. It was nice- I am going there from now on. I felt the need to have at least 5 syringes in the house since we'll be alone sunday night. and I am sure I won't be able to got to sleep without having my bag packed for the hospital.
Joan is coming to visit so at least we'll have company in our misery.
I am getting used to sleeping 3 hours a night again and walking around like a zombie all day long. So if I am rambling it's because my brain cells are slowly dying.

E

Doing better

Madison is doing better but still not completely herself.
Her eyes are glazed and sometimes she looks like a drunken sailor. She is much grumpier than usual and gets tired very quickly. Jeff and I think she is getting chubbier which is very possibly a side effect from the medication. It's funny they don't know when and whether the medications work, but regardless the side effects are there.
We are starting to think that is not the right medication for her. But what is? Every medication will have its side effects some better some worse.
She has a fourth tooth coming- which is another reason why she hasn't been feeling all that well. and for all we know the pain or a slight fever we didn't detect could have triggered the seizures last week.
She is enjoying exploring new foods. She has already had a french fry and some mashed potatoes. She really enjoyed her first bagel ( picture to come).
I feel lost. I hate seeing her like that. I am not sure what to do because there is nothing I can do. I keep thinking how her life is going to be- what are the things she wont be able to do, how is going to be different, how is she going to handle it.
At this point I just want her to be happy. I want to see my little girl giggle and laugh like she used to be. That's the only thing I can try to do- make sure she has the right attitude and is happy with who she is.

E

and it keeps on going

it actually never stops.
Madison 's been having a rough couple of days.
After her Seizure on Wednesday the neuro upped her dose of Trileptal to 3cc twice a day.
I was expecting her to be grumpy and throw up but she was actually doing pretty well.
Until late last night when she threw up while asleep- that was already scary since it was only luck that we were in the room with her. The thought that she could have choked still bugs me. I will now definitely have trouble leaving her alone. Poor thing had pureed veggies coming out through her nose.
Fortunately daddy always knows how to make her feel better so they took anice hot bath together and she felt better.
She threw up once more but was obviously doing better. The question was whether to give her another full dose of Trileptal. The doctor said yes, but we decided on giving her less and then giving it to her again earlier than usual.
She actually slept better than she had in days, woke up around 5 am and we gave her 2cc ( the dose remained the same but we'll be giving ti her 3 times a day now instead of 2)
At 7:16 I woke up from her jerky movements. She was having another seizure- full body and face. We gave Diastat right away and she stopped seizing at 7:24.
she has been out of it all morning and gets tired very quickly but is recovering pretty well.
She learned to clap her hands this week so whenever she wants to make me happy she claps her hands and smiles at me.
She is such a strong little girl. The seizures and the tons of medications never make her want to stop moving and playing and be around people.
She is my sunshine


E

A new one...

We had our first seizure while we were outside yesterday. I've been fearing this day would come and like everything inevitable it did.
I was walking down the street arguing on the phone with Daddy when I noticed that she was staring at me, which is not like her. Sitting in the stroller her head was turned up and back toward me, as if asking for my attention. Her body was still, there were no convulsions although he right arm was rigid, holding on the water bottle strap. The only sign that was having a seizure was that she was blinking rhythmically and not responding to me calling her name.
Of course I freaked out and asked Jeff to bike over. Pushed the stroller to the side of a building, lied her down on her right side and undressed her to give her the diastat. I didn't know how long she had been seizing and certainly wasn't going to wait another 5 min.
I soon as I pulled out the diastat I saw the blinking was slowing down and the seizure stopped. I am pretty sure it stopped on its own - the diastat never wrks so fast.
Of course she was a drunken sailor for the rest of the night but didn't want to go to sleep right away. Finally around 8 she passed out. Until about 12:30 when she decided it's time to play- mommy was already exhausted so daddy took her in the other room to tire her out as well. She was restless again for the rest of the night. I believe that the Trileptal is giving her nightmares. Although some people say it actually gave them night terrors. In either case our family is sleep deprived again. She's been sleeping now since about 8:30 and I just woke up.

We love her so much.

E

long overdue pictures

oooohhhhhhmmmmm

Everything seems to be just fine these days.
Madison hasn't had a seizure in more than a week. Last weekend was tough because daddy was away and she just had a seizure on Friday. so she wasn't feeling very peachy. Grandma came over and Madison welcomed her with a vomit volcano on the shoulder. she felt much better after that- Madison not grandma.
We are now joyfully exploring finger foods and she loves gumming everything from cheerios to pears to prunes.
We went back to our mommy and baby yoga class after missing many of those. she got to see her old friends Maggi and Leora and they played together ever so nicely. Maggi pulled Madison's pants down while trying to pull herself up on her and Madison went for another Mammy's boob.
LAst night I went to a Hebrew chanting class while daddy stayed home with her and had to figure out how to grow a boob- he is very inventive, I don't worry about him much.
so now mommy has found her long lost inspiration for yoga, chanting and meditation and looking forward to more of that experience that brings some sense into her chaos of a life.

E

Censorship

This blog was started for fun - for me to write my experience during pregnancy and then when Madison was born, so that I can go back and read and laugh and one day she can read it too. It was so I can keep my friends can keep up with the fast growing Madison and our daily adventures. It wasn't so that my parents can hardly understand what I am saying and then pester me questions and phone calls.
But hey, here they go ruining it all again. so I am going back to the original title "My buldging belly" it may not be spelled right but that was not the point in the first place. I felt that there should have been a "d" there to emphasize the bulging and since it is my blog it is my spelling too. I hardly ever write any more because before I write I have to think what my parents would think and what are they going to call and ask. So many events go unrecorded. If that is not Censorship I don't know what is. So here we are back to the original title and hopefully back to the original idea- to just write To write because it feels good not because someone would read it.
and the harsh truth is there are hardly any friends left to update too. No one seems to give a crap any more- no one calls, no one emails, no one says how are you, do you need someone to talk to, do you need a hug.
But that's fine because when hard times hit only true friends hang around.
And here we are hard times are here but there is no one around. and the silence is deafening. It Screams. You are alone.
And that's fine too- after all haven't I been alone all my life. There were very few passers by who stuck around long enough for the bad times and eventually they all went their way too. But I am still here and I still stand. I've been through enough to know that I can take it. Especially now when I know that there are people who love me and who need me. My own family. Not the one that for years took for granted that I should love them and be there no matter what they do. And they still haven't realized that that love and care are not an entitlement that runs through one's veins. They are a privilege that has to be earned. Through unconditional love and affection. And they are still in denial when it comes to our relationship- denial that I have anything in common with them.
I have the family I chose- it may be dysfunctional but it is mine. And I would never take it for granted that they should love me and be close to me.


E

not knowing

another day, another trip to the ER, another doctor saying she looks fine. I am getting tired of going from hospital to hospital and getting the same lame answer- we don't know. She looks good.
She was improving. Last night before we went to bed she was almost back to her normal self- playing and smiling and crawling around.
This morning she woke up and was very lethargic again. She would drift in and out of sleep, twitch and vomited all over me.
We called our doctor- he said go to the ER. He assumed she might have had another seizure.
The ER doctors saw nothing wrong with her. It could be something viral, it could be just the new meds, it could be this and that.
I wish someone would give me a definitive answer and tell me what is wrong.
The fact that I can do nothing for her drives me crazy.

I just want to hear her giggle again.

E

Drugs, Canada and Status Epilepticus

Madi is officially 8 months old today and what a week it has been!
First thing Monday morning we headed out to Montreal to visit our friend Joan. Made a pitstop in Saratoga Springs for a John Meyer concert. I didn't stay for the concert, since it was past Madison's bedtime but did get to meet and greet him- cool guy, very tall. We had 3 extra tickets so we decided to play benefactors and walked around looking for someone we liked to give them the tickets. I saw 3 girls who were super excited to get VIP tickets in the orchestra and it turned out 2 of them were pregnant too so they were really grateful.
We got to Montreal Tuesday and spent the afternoon roaming around Old town. It took us a while since most of the city is under construction and our GPS had suddenly lost its ability to understand English.
Wednesday we visited the Biodome and loved the penguins. At lunchtime our day and our trip went spiraling down...
We were about to order lunch when I noticed that Madi's hand was jerking. she was having another seizure. She was asleep so we woke her up. Waited 5 minutes and gave her 5 mg of Diastat. Repeated the dose since the first one didn't seem to work. About 15 min in the seizure we realized it wasn't stopping and headed to the nearest hospital. The convulsions had spread from the right arm to the right leg, to the left leg, left arm and finally the her face and were causing her to blink rhythmically with the convulsions.
My attempts to find the ER were helped by an administrator who found me in the hallway, ordered me on a wheelchair and got me there in no time. About 8 doctors and nurses surrounded Madison who had been seizing for about 25 minutes already. Their attempts to stop the seizure were in vain. Madison was in what is known as Status Epilepticus- a state of constant seizure. They kept on poking and probing and shooting drugs in her little body. Finally 55 minutes after the seizure had begun she relaxed and went into deep, drug induced sleep.
We were transferred to a pediatric hospital where we spent the night. Welcome back to socialism!- no diapers or anything provided by the hospital. Three beds to a room and they weren't even monitoring her heart rate or O2 saturation. The nurses came in like prison guards with flashlights every 2 hours to check on her. Every time they woke her up it took me another hour and a half to put her back to sleep. Around 4 am she started screaming like a banchee. It took me half an hour to convince the nurses that something is wrong with her and she is not just throwing a tantrum. It took them another 20 min to get her some tylenol.
Our road trip ended even more prematurely because the drugs we needed were not available on that side of the border. They could not give her a 10 mg Diastat for the ride home because she didn't weigh enough. Even after our doctor faxed a prescription to be filled Trileptal, an AED, was nowhere to be found.
So we headed back home.
When the guard on the border said "Welcome home" I said " thank god for Capitalism!
We are now back home. Madi is doing well. As well as she can between being drugged up, having 3 teeth come in, and fighting some kind of mysterious infection.
I hope this all ends well!


E

Happenings

Things happen and then they go in the past just as another experience.
some moments I want to live in forever some I can't wait to forget.
Madison had two more seizure and another fruitless stay in the hospital. Last Thursday was seizure#5- right arm, eventually spread to her face and her mouth started twitching. the Diastat didn't work right away so we went to the ER.Of course the seizure stopped when we were getting out of the cab- lasted about 20 min.The nurse made fun of us that we were so calm- we had seen it all before, no need to fret. They took her BP and temperature and held us for 5 hours to wait for an ambulance to transfer us to Beth Israel for another 24hr EEG. The results- They have no idea what is causing the seizures. We knew just as much before we spend another tiring night in the hospital.
The good news- we made it to club getaway so I got to waterski again(doing much better now) and finally get into a backend split and catch it twice.
My first catch in two years was scary and I was so nervous i felt nauseous on the board. But the second was perfect and I was so happy to fly again. That is the feeling I want to feel forever.
Anyway in between crawling, standing, cutting teeth and babbling up a storm Madison had another small seizure yesterday morning- only left arm diastat kicked in in about 4 min and the whole seizure was about 12-15 min- she was smiling at us and didn't seem disturbed about it.
Enough about the bad moments!
Madison went on the swing for the first time and loved it. Yesterday we went to see the animals in the petting Zoo and spend half the day with auntie Astrid and Vania. Madison loves company she would play with anyone who comes close.
She had a great round of giggles with Maria( our cleaning lady) who was trying to teach her to count in Spanish.
she is just the happiest baby. Obviously she's gotten very good at forgetting the bad moments right away.

E

How we pass time...