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Almost over

Frankie is doing well. As expected he has to keep us on his toes. He had a seizure today. At first I was upset but, it was just not meant to be. The important thing is I have my Frankie and he is still Frankie. Looking around the Pediatric ICU for 3 weeks makes me realize how lucky I am. He will get the Vagus Nerve Stimulator in 2 months (day op). They also plan on changing medication a bit at our next visit. He has been an amazing little boy through this. We will figure this out.

Today we had a surprise visit from our North Carolina Family. They came bearing a very heart warming and generous present. We thank you all so very much for thinking of us. If only Aunt Ruby wouldn't cry!!!!!!! :).
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Frankie is done with surgeries. They couldn't remove any epileptic foci because he didn't have enough seizures. We feel horrible that this didn't work out. They think it could be due to the doses of steroids. In 2 months he will get the Vagus Nerve Stimulator. That is an Out Patient procedure. He is doing well. Hopefully, we will go home Friday. We are happy this is over for now.
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Its over

Frankie is out of the OR. He is ok. A few more days and we get to go home.
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Frankie is in the OR now to take out the EEG leads and end this saga.
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OR Tomorrow

OR tomorrow to end this mistake! They are removing the leads and putting him back on the medications he was on prior to surgery. Yes, we did this for nothing.
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Just Waiting and Relaxing

Frankie is doing well. Team Meeting tomorrow. Surgery is wednesday. It might just be to close up and not cure.
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Christmas

Nothing to update. Just making the best of this!

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Christmas Morning

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Update

Still no seizures. He is just acting a bit slow and distracted. We only have till next wednesday and this is over. On a good note NYU FACES extended our apartment use for free. On a bad note we will ring in the New Year here.
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Santa giving Frankie a Nintendo DS game!!

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Macys Santa

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Update

We are still waiting for more seizures. There won't be surgery today next date is thursday. After thursday they will take it day by day to determine if a resection can happen or if the leads will be taken out. We decided to do things our way today. To let him sleep tonight and see if what happens with sleep since we have tried everything they wanted us to try. Hoping for a seizure.

Santa has come everyday and he has received a lot of presents. Today the Macys Santa is coming. Santa will be coming everyday until Christmas.
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Update.

Well we still are waiting for more seizures. The one that he had is not enough. Still waiting.
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Update

Well, while thoroughly reviewing the EEG they found a seizure. They want more but at least we know they are coming.

Frankie is having a great experience with the teacher here. She is great. She is using the work that his school sent home and some of her books. He has a book that he sings that is so cute. I'm really proud of him. A hospital administrator color copied the book for us and attended a performance!!!

They gave Frankie caffeine and ritilin to hopefully induce seizures. Well all it is giving him is diarrhea of the mouth. I do not know how ritilin can help with ADD because he is nonstop!
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Update

Frankie still hasn't had a seizure. There will not be surgery tomorrow. I have been reassured by several people that this happens all of the time since the kids are stuck in bed and are on steroids. Ugh
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Frankieisms

"Ma put my toys in the bag. My socks too! Let's crack the window and start walking"

"Ma I don't have "Epiplepsy" and seizures". - Well that would be why - huh!

We are still waiting for seizures but keep getting reassured that it takes most kids days to have them. I say general anesthesia once a month and no more meds everyday! :)
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They said to give him soda with caffeine

Boy isn't he happy!
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Still waiting

Still no seizures. We sleep deprived him. Kept him up until 1 and woke him up at 530. I think his brain likes NYU. I guess will be his med school.
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Next Surgery

The next surgery is tentatively thursday! The surgeon is happy with how quickly Frankie bounced back. Now he needs to have seizures.
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Playing the Banana

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Playing his Nintendo DS

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Still no Seizures

We are still waiting for seizures. The Doctors are confident that it will be soon. They said the general anesthesia and the steroids are delaying things. He is very comfortable and slept all night. He is just home sick and misses "his Molly".
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Disney

Just promised Frankie a trip to Disney to make him stop crying. I don't know how we will swing it but a promise is a promise!
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Last night was a loud night in the room. Frankie barely got any sleep. We are still waiting for seizures. By the way he is acting there might be a few in our near future.

Today, Frankie got his first set of Hanukkah gifts ever from the Jewish Lawyers Society. It was very generous of them.

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Much better

Frankie is doing much better today. He slept all night. They changed his pain meds and he is feeling much better. He is moving around well. Now we just have to wait for seizures. Santa came by today too!
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Frankie's Christmas Tree

Frankie and his Christmas Tree

The get well card made him smile

Get Well Card From Frankies Class

Get Well Card From Frankies Class!! Thank You it made Frankie smile.

Still Smiling

When Frankie told them that he had pain they asked him to pick which face on the "smiles pain scale" he was.  He picked the "Happy" face..  When asked "Why?"  Frankie responded because "I am happy but, I just hurt a little bit".  Gotta love him.

Oh What A Night!

Frankie had a rough night. He was scared and uncomfortable. They gave him plenty of pain medicine. He was angry about every tube and IV. I mean every tube. He was fascinated by the tubes and drains too. He is very irritable. This morning he woke up, sat up, and insisted on brushing his teeth. He can't play with anything we have with us now. Both hands have IVs in them. His new ipod is a no go because his ears are covered. So this morning we have done stickers and hidden pictures together. Our morning has started at 4 but I don't know when our night ended :). He is much more alert today. I asked him what he wants as a present when we get out of here. He replied the "yellow transformer bumble bee". I told him I will get him one when we go home. He insisted that he couldn't go to the Toys R Us in NYC because the dinosaur is to loud and scary! So all wheels are turning. This morning Frankie will get another MRI.
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2 more surgeries to go!

He is out of the OR. The surgeon said everything went perfect.
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As Frankie would say: "Waiting...Waiting...Waiting..."

Frankie was just brought into the OR we wont know anything until 5PM.

Frankie with Computer Markers on his head

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We are here!

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The Apartment

We are here!!

Alright we are here in the City!! The apartment is nice.  We are unpacked and as ready as we will ever be.

Frankie's Hair Cut

Alright so yes he had to get his beautiful hair buzzed!!!  He laughed the entire time.  Daddy had to take him because we knew that I would cry.  (So I went shopping)  Afterwards, Frankie turned to Frank and said "I'm a tough guy now!!!" Then said "Uh Oh!! What is Mom going to say?"  Well, Mom was speechless.  He is too cute. 

Thank You Everyone

We have been overwhelmed by everyones kindness and support.  We are lucky to have so many special people in our lives.  Thank you!!!!!

Medically Cleared

This morning, Frankie was cleared for surgery by our Pediatrician.  Frankie was full of nervous energy while at the Dr's office and when we got in the car started crying.  He says he is scared.  Poor Little Guy.  With a little reassurance and a video game he is happy again.