IMG00049-20101231-1530.jpg

IMG00046-20101231-0931.jpg

Sent from my Verizon Wireless BlackBerry

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!!!!!!! :).
Sent from my Verizon Wireless BlackBerry

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.
Sent from my Verizon Wireless BlackBerry

Its over

Frankie is out of the OR. He is ok. A few more days and we get to go home.
Sent from my Verizon Wireless BlackBerry

Frankie is in the OR now to take out the EEG leads and end this saga.
Sent from my Verizon Wireless BlackBerry

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.
Sent from my Verizon Wireless BlackBerry

Just Waiting and Relaxing

Frankie is doing well. Team Meeting tomorrow. Surgery is wednesday. It might just be to close up and not cure.
Sent from my Verizon Wireless BlackBerry

Christmas

Nothing to update. Just making the best of this!

Sent from my Verizon Wireless BlackBerry

Christmas Morning

Sent from my Verizon Wireless BlackBerry

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.
Sent from my Verizon Wireless BlackBerry

Santa giving Frankie a Nintendo DS game!!

Sent from my Verizon Wireless BlackBerry

Sent from my Verizon Wireless BlackBerry

Sent from my Verizon Wireless BlackBerry

Macys Santa

Sent from my Verizon Wireless BlackBerry

Sent from my Verizon Wireless BlackBerry

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.
Sent from my Verizon Wireless BlackBerry

Update.

Well we still are waiting for more seizures. The one that he had is not enough. Still waiting.
Sent from my Verizon Wireless BlackBerry

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!
Sent from my Verizon Wireless BlackBerry

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
Sent from my Verizon Wireless BlackBerry

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! :)
Sent from my Verizon Wireless BlackBerry

They said to give him soda with caffeine

Boy isn't he happy!
Sent from my Verizon Wireless BlackBerry

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.
Sent from my Verizon Wireless BlackBerry

Next Surgery

The next surgery is tentatively thursday! The surgeon is happy with how quickly Frankie bounced back. Now he needs to have seizures.
Sent from my Verizon Wireless BlackBerry

Playing the Banana

Sent from my Verizon Wireless BlackBerry

Playing his Nintendo DS

Sent from my Verizon Wireless BlackBerry

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".
Sent from my Verizon Wireless BlackBerry

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!
Sent from my Verizon Wireless BlackBerry

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.

Sent from my Verizon Wireless BlackBerry

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!
Sent from my Verizon Wireless BlackBerry

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.
Sent from my Verizon Wireless BlackBerry

2 more surgeries to go!

He is out of the OR. The surgeon said everything went perfect.
Sent from my Verizon Wireless BlackBerry

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

Sent from my Verizon Wireless BlackBerry

We are here!

IMG00010-20101209-0540.jpg

Sent from my Verizon Wireless BlackBerry

IMG00011-20101209-0553.jpg

Sent from my Verizon Wireless BlackBerry

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.

Presurgical Testing at NYU

Today Frankie had his Presurgical Testing and Hematology clearance. We found out more details of what to expect the day of the surgery. That day is going to be a long day.  Starting off with an MRI, Surgery including pulling any loose teeth, and placement of a picc line. As per hematology he is cleared for surgery.  Next clearance is with our Pediatrician.

Also today Daddy, Uncle Jimmy, Grandpa, and Uncle Grant donated blood for Frankie.  That is one way to make us blood related.  :)

Special thank you to the new Mr. & Mrs. Richard Lucas who on their first day married went to NYU and donated blood for Frankie.  We thank you so much for thinking of Frankie during this busy and happy time for you.  Congratulations and Thank You!

THANK YOU EVERYONE!!!  We should have enough blood now.  (It better be !!!).  We will put the word out if we need more. 

Letter to Santa

Dear Santa,
I am a good boy.  I am getting my brain fixed. Please come to my house and the hospital in NYC.  Don't forget me! I want Legos and drums.  I Love Dad and Mom. 
Love,
Frankie
Anzaldi

Video games too!!

Meeting the Neurosurgeon

On 9/21/2010 we met the Neurosurgeon.  Dr. Weiner already reviewed Frankie's file with 'The Panel" at NYU and has already determined him as a candidate for surgery.  This is our chance to meet him.  He was wonderful, knowledgeable, honest, and reassuring.  Surgery is scheduled for 12/9/2010.  Frankie will most likely be in the hospital for Christmas but, we really don't want to put the surgery off too much longer.  Frankie has had a lot of seizure activity recently including a prolonged 45 minute long seizure that resulted in a visit to the ER.  Christmas will just have to be celebrated when we get home and I am sure Santa will find his way into Frankie's hospital room.  We are hoping for a Christmas Miracle and all of our Christmas Wishes to come true. 

We are also very lucky to have been able to get a free apartment for 3 weeks from the FACES organization (Finding a Cure for Epilepsy).  That relieved alot of stress of wondering where Frank will sleep while I stay at the hospital.  (Ok 3 weeks is a long time maybe I will take a few hours off!!).  The apartment is aparently very close to the hospital too!

"Alright enough pictures Ma!"

6/2010

Now that smile is a bit more convincing.  Check out that Lego truck he built!!!

6/2010

Frankie having an EEG done at NYU and building his Lego's. 

6/2010

Frankie's Story

Frankie was adopted at 5 1/2 years old.  He is an amazing child.  He was home for about 8 months when he had his first seizure.  Then, he was diagnosed with Epilepsy.  We went to many Dr's and tried many different medications.  We discovered NYU.  The Dr's and staff there have been amazing.  Frankie was evaluated to see if he was a surgical candidate.  Well, he is.  We are meeting with the neurosurgeon in September.  They plan on doing an invasive EEG (EEG leads placed directly on his brain) and then weaning his meds to allow him to have seizures.  They will then determine which areas are causing the seizures.  If the area is a safe area to remove they will remove that epileptic area of his brain.  They do not think in Frankie's case this will be a cure but, they do hope it will significantly reduce his seizures so he wont require so much medication.  It is a 3 step surgery.  He will go have the leads placed on his brain then brought back to the Pediatric ICU and wait for seizures to occur.  He will then go back to the OR for a resection (if it can be done) then they will replace the EEG leads.  He will return to the Pediatric ICU again and wait to see if he has seizures.  He will then be brought back to the OR to refine the resection and close his head up.  The poor kid will be put through a lot.  We trust these Doctors and staff so we hope this is the right thing to do!!!

Calling Dr. Frankie!!!!

Frankie putting an IV into the Teddy Bear's arm with the Child Life Therapist. 

April EEG at NYU

April EEG at NYU to evaluate Frankie for surgery. Frankie made a pair of glasses out of Bendaroos!!!

Tuberous Sclerosis Surgery

This is the surgeon that will be performing Frankie's surgery.  Frankie does not have Tuberous Sclerosis but, the first step of the surgery is the same.  Instead of removing tumors they will be removing epileptic areas of the brain to hopefully decrease the amount of seizures he has.