1 year ago...

One year ago I first witnessed one of Erica's seizures. At the time, we didn't realize what we were dealing with. So much has happened in this past year, so much has been learned, and so much is to be celebrated. Erica has been seizure free for FOUR months!! Her life has resumed to that of a normal 12 year old girl...whatever that is. :-) She is full of life, enthusiasm, and teenage attitude. 

3 Months Post Surgery

Still seizure free! Erica is enjoying being able to do anything her heart desires! We have also begun to finally feel comfortable enough to allow her to babysit Sam. We actually had a date night!! More to come. :-) 

Cool Pictures from MRI and CT Scan

First MRI picture of the tumor. White spot on right side. 

This picture below was taken during her Wada Test. You can see the wire on the lower right side being sent through her artery.

This next picture below was taken during the CT scan while they placed the head frame on her head. You can see two of the four pins that were secured in her skull to keep frame in place. 

In the picture below, you can see the laser fiber that was place in the tumor. This picture was taken at some point during the "burn". 

This colorful picture of her brain is just cool! Not exactly sure what it tells us. 

This picture shows the black hole where the tumor once lived!

This last picture is a neat profile picture of Erica's head. 

Heading to CT!

Booked our flights and are super excited to finally be able to visit family and friends in Connecticut. We will fly into Hartford on Dec 25 in the evening, and we will stay through Jan 6.  Looking forward to saying goodbye to 2013 and welcoming 2014!

Student of the Month!

Erica was recognized as one of Preston Middle School's Student of the Month!  We are so proud of her.

Mrs. Baker and Erica

Look what I can do!

After many months of restricted activities, Erica enjoyed her moments of getting back in the water and on the ice. She described this week as freeing!

And yes, she is supposed to still be taking it easy on her ankle. 😳

Oh...and about her ankle...

She had a check-up with her Orthopedic doctor last week.  X-ray looked good.  She no longer needs to wear the walking boot.  She has three more weeks in an ankle brace and has been cleared for light activity.  Doc said it is okay for a little Tae Kwon Do and ice skating, but nothing intense.  Another check-up in one month.  Whew! 

One Month Follow-Up Appointment with Neurology Team

ONE MONTH SEIZURE FREE!!

We met with her neurology team today:  Dr. Park (Epilepsy Specialist), Dr. O'Neill (Neurosurgeon), and Dr. Wilkensen (Neuropsychologist).  In brief, all were very pleased with Erica's progress.  Seizure free, with not even an aura, was celebrated by all.  They were excited to hear how well Erica recovered.  We spoke in length with Dr. Park about Erica's current medications and dosage.  Her recommendation is to continue to take current dosage and both medications.  She believes the brain is still calming and it is uncertain if medication is assisting this process.  Since things are going so well, let's continue the course for a bit longer.  We will reevaluate at our next visit. 

Next steps:
In 3 months - Meet with Dr. Park for check-up
In 6 months - Repeat MRI
In 9 months - Neuropschology Testing

Great day to celebrate!  We are looking forward to Thanksgiving Break so that she can swim and ice skate, both activities she has not been able to participate in for some time.  Looks like we'll look into booking flights for Winter Break so that we can visit CT!

Benign!!

At Erica's two week check-up, we learned from the pathology report that her tumor was in fact benign! Yay! Today marks three weeks of being seizure-free. Erica started back to a full day of school (every other day) this week. So glad to be getting our lives back to some normalcy. Now if we can get her walking without an aircast boot, we'll be smooth sailing!

Exploring Rocketry!

11 days seizure free!  Still doing amazing.  We meet with Dr. O'Neill (Superman) on Thursday for a check-up and biopsy results.  We will then meet on Nov 25 with the neurology team supporting Erica.  We will see what the next steps are for Erica and when we can start to wean her off medication.

In the meantime, we've kept busy this weekend exploring rocketry.  Erica has joined a rocketry team at her school.  They have not started meeting yet, but the rocketry mentor at Erica's school, Mr. Howe (assistant principal) invited us to attend a rocket launch event today.  He and several other Preston students and parents attended and spent the day launching rockets.  This was Erica and Sam's first exposure to rocketry.  Within 5 minutes they were hooked!  Sam was one of the best rocket retrievers at the event.  We were also very happy to celebrate Mr. Howe's successful launch to earn him his Level 2 rocketry certification.  So much fun and learning today!

Learning how to prepare a rocket

Preparing rocket

Retrieving Rocket

Mr. Howe and Preston Rocketeers!

Packing the rocket

Getting ready for launch!

Happy Halloween!

What a tremendous week back to school.  Although Erica missed her ladies in the front office, she didn't miss the reason for visiting the nurses office so frequently.  What a miraculous change in Erica.  Absolutely NO SEIZURES, not even an aura!  We have all noticed, teachers included, that her focus and clarity have improved.  Can't wait to see how good she feels when she can get off her medications.  That will be some time though. 

Halloween approached with many fun events on the calendar.  Sam was excited to be a Sumo wrestler and Erica was going to be one of the "Dumb and Dumber" duo (Her friend Sanne was the other).  Sam's class had a Halloween party.  Trick-or-Treating of course was a highlight and we had lots of fun with our good friends.  Erica's school also had a Halloween activity night on Friday for which I also had "activity night duty".  This never pleases Erica, but something miraculous happened in the dance area! I was enjoying a peppy tune and dancing a bit.  Normally Erica would be totally embarrassed and leave the room.  Not this time!  She and her friends came over and danced the rest of the song with me!!  Love that girl.  Later on in the evening, Dumb and Dumber (Erica and Sanne) won for one of the best costumes at the dance. 

Sumo Sam!

Dumb and Dumber

Best costumes at Preston Activity Night!

First seizure-free weekend...and LOTS of smiles!

So it has been a week since I've had some down time to blog our family's progress.  It is a GOOD thing because we've been busy getting our lives back to normal!  Erica's recovery has been unbelievable.

Besides resting last weekend, Erica also had a chance to spend time with some of her closest friends.  MJ and Sanne visited on Friday night.  Although I was a bit anxious that increased activity and movement might trigger a seizure, nothing of the sort happened.  It was good to see her cheeks get pink from giggling and activity, and even better when she didn't have a seizure.

Sanne and Erica

MJ and Erica

She rested up on Saturday to prepare for a busy Sunday.  Sam had a great hockey practice, played floor hockey with Mimi and then made dinner for us all! 

Sam in black with white helmet...playing defense as usual!

Team Martino

VS  Team Pallone

               

Chef Sam!

Getting ready for yummy pork chops and grilled potatoes!

Sunday was a great day of celebration. Sanne and Petra (Sanne's mom), hosted a wonderful luncheon for Erica and her "school support group".  What a special group of kids!  Thanks to the Westenbrinks for hosting a great luncheon to celebrate a successful surgery.  Had a great time jumping in leaves, eating Erica's favorite food for lunch, and playing charades.

Ready...Set......

Best Seizure Support Group Ever!

Later that day, Erica was feeling so good, we decided to stop by a Halloween party.  We stayed long enough for the kids to carve pumpkins, visit with friends, and for Sam to win one of the grand prizes for best pumpkin.  I think the sideburns is what won it for him! 

Sam's winning pumpkin!  Sideburns and all!

Mimi was scheduled to leave back for CT on Monday.  We all returned to school and Mimi joined Sue for lunch and successfully embarrassed Erica in the lunch line.  What a wonderful visit with Sue's mom.  Thanks Mom for being there through it all!  We will miss you!!!

Back to School!

Getting goodbye hugs from Mimi in the lunch line!

Home and Resting!

Yesterday was a busy day and exhausting day.  I think Erica had a fairly good night of rest, but Sue struggled with the rock-hard bed and many visits from nurses checking Erica's vitals, changing IV drips, etc...Starting at 7am, Erica was visited by many different doctors and nurses throughout the morning.  All were very impressed by how well she was recovering.  Aside from a bit of lingering nausea, she had managed to eat a light breakfast.  Doctor O'Neill and his team stopped by with great news.  Erica was well enough to head home after she received her last dose of steroid/antibiotic via IV sometime between 11 and 12. 

Superman and Supergirl!

We learned that during Erica's surgery, they had been using a new software program and head frame.  They were impressed with how "slick" and "smooth" the surgery went using this new software/hardware.  Erica was also the very first patient at Children's Hospital to undergo Visualase surgery and not need to go to ICU post-surgery.  They said she is a trend setter for future patients! 

We continued to have many visits to our room.  Mimi and Sam arrived to help us pack and get discharged.  Erica also had several gift deliveries from her grandparents!  Thanks for cheering up the morning!

Finally, a well needed hug from brother!

Checking out her pin-holes from the frame

Thank you Grandma and Grandpa Charron!

Thank you Greg, Lindsey, Grandma and Grandpa Martino!

 
Erica received her final dosage of antibiotics and had her IVs removed.  We dressed, packed, and checked out around 12:30  We couldn't believe that 12 hours earlier, Erica was having a tumor removed.  Incredible what current technology can do for quick and painless recoveries! 

Mimi drove us home.  Erica and Sue slept the entire ride and then some more when we arrived at home.  Thanks to Mimi for taking care of Sam while the girls got rested up!  The rest of the day and evening was very low key.  The whole family was mentally drained from all that we've been through.  Erica decided it was time to shower and wash out her hair.  When we took the hair-tie out of her hair, the side pony that she was wearing simply stood in place from all the gunk left over from surgery.  She sat in the shower for some time letting the water run down her head.  She had lots of dry blood and left-over soap from when they washed with disinfectant soap and alcohol. After the shower, mom carefully brushed her hair out and took a good look at the incision.  It looked clean and healthy.  We rested the rest of the evening and had a wonderful night sleep. 

Ahhh...nothing like clean hair!

That's all folks!  That's the incision.  All that remains from a tumor being removed.

Friday has been a wonderfully restful day.  Erica is excited to see her good friends tonight.  They should be by in a bit for a visit. 

Did I mention we are 2+ days of being seizure free?  Still keeping fingers crossed.