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