We are home!

After a 10 hour sleep, doctors felt she was ready to go home.  Erica was unhooked from the EEG monitor and released from the hospital at 10 o'clock Friday! Aside from having a lot of glue stuck to her scalp and flakes of glue in her hair that looks like blue dandruff, she is feeling great!

Children's Hospital - Day 4

The night nurse woke us up before sunrise.  Having had only four hours of rest, we were up and again grumpy and whiny.  We attempted to keep each other awake with nudges back and forth.  After breakfast and freshening up, Erica wanted to soak her feet in warm water.  She soaked feet and started reading a good book.  Then she sat up and yelled, "Button! Button!".  I pressed the alert button and she had a pretty intense seizure.  While she was recovering, her neurologists arrived and said she could sleep as long as she needed.  They had gotten the information they needed from the four seizures they have observed and recorded.  Sleep deprivation was terminated, medications were started up again, and we were told we could be discharged tomorrow (Friday).  Quite literally, Erica was asleep within 30 seconds of the doctors leaving and slept for about 4 hours.  I even got a nap in!  Today has been a great day for resting. 

EEG Monitoring during normal brain activity

Ahh...sleep at last!

We've been watching the news regarding the heat wave in Northern Colorado. We are so glad that we haven't had to deal with the hot temperatures at school. Because of the unprecedented heat and inability to cool temperatures at night, school has been cancelled for tomorrow.  I think this is a first for our school district.  I'm starting to really like our new superintendent!  As a result, we arranged for Sam to have a sleepover with a friend (thanks Trish!) so that Carl can work tomorrow.  Sounds like he'll get to go fishing!  Looking forward to seeing him tomorrow.  We are missing him so much!

Children's Hospital - Day 3

We woke this morning at 6 am after only having 4 hours of sleep, per doctors orders of sleep deprivation.  Tiredness is most certainly a trigger for seizures.  Both of us were grumpy and utterly exhausted.  When the neurologist checked in with us in the morning, we were surprised to hear that Erica had a seizure in her sleep.  The information they have received and learned thus far:
 - 1st night's sleep showed irregular patterns in her left temporal lobe.
 - seizure from 2nd day appeared in left temporal lobe.
 - seizure during 2nd night sleep also occurred in left temporal lobe.
These consistencies are great and happening in the same region as the tumor.

Around lunchtime, a neuropsychologist arrived to start intake questions for Erica's nuero-psych test in a few weeks.  They wanted to get some general background information about Erica's academic and social proficiencies to start a baseline measure. 

Since we've not been able to sleep or nap, we've filled our time with cards, games, a small attempt at school work, and a lot of classic movie watching.  Erica watched for the first time Pretty in Pink, Girls Just Want to Have Fun, and Footloose.  She laughed more at the outfits and hairstyles than she did the actual comedy.  She wanted to know why the 80s were so weird!

Around dinner time, she had a chance to Face Time with some friends and family.  Soon after her conversations, Erica yelled to me that she was having an aura.  I pushed the event button and by the time I reached her, she was in a full blown seizure.  It was the most intense one we've seen since our stay at the hospital.  It was a good one to capture on video and EEG.  She took a short nap after the seizure, but had to be woken since she is still on sleep deprivation orders.  Since she napped for about an hour this evening, we will most likely be limited to less than 4 hours tonight.  Ughh...

After waking Erica from her post-seizure nap, she was a hot mess, literally and figuratively.  She was SO exhausted, aggravated, and uncomfortable.  There wasn't much I could do to make things better for her.  Then there was the most timely delivery...chocolate covered strawberries sent with love from Grandpa and Grandma Martino.  Thank you!

My First Two Days in the Hospital

Erica here! I'll pick up where my mom left off...

Getting IV started

Around 5pm, a doctor came in to tell us sbout our evening plan.  They were going to wean me off my medicine to help provoke seizuers to happen. They also had informed me that I will be needing an IV, just in case I have a terrible seizure and need some emergency medicine. The IV nurse came in and tried the back of my left hand... and my vein collapsed. So he tried my other hand and... that one collapsed too. Needless to say, I was really upset and very sore. So, the nurse said we'll take a break and get another nurse to try. While we were waiting for the other nurse, I had some visitors arrive. Mrs. Tracey, Sanne and MJ couldn't have come at a better time to cheer me up. We all got settled in and the other nurse arrived to start my IV. My friends stayed to support me and the nurse got it on the first try. 


We all decided to order breakfast for dinner! while we were waiting, we listened to music, played a game of Balogna, and laughed a whole lot! We had a nice meal, and I enjoyed their visit. They stayed until arround 7:30pm and left, because they had a long ride, and because it was a school night. :)  After they left, we went to bed right away and watched the lightning storm outside our big window. I had a good night sleep, however, mom did not because her couch-bed was uncomfortable.

Add caption

                                                     

                        Okay...I'm going to let my mom take over writing now!

Science HW & Pedicure

Erica and I spent the day playing cards and games, doing school work, replying to emails,  and even pedicures.  The doctor came to discuss the interesting and notable observations made while she sleeps. Her left side of brain has very different patterns compared to her right brain.  We also discussed the plan for the day to provoke seizures.  Continue to wean off meds and start sleep deprivation.  At about 2:30, Erica had a seizure.  She felt it coming on and pressed the alert button.  After looking at the record on the EEG, it was determined to be a small 50 second seizure.  One thing that I learned when viewing the brain activity was how to actually tell when the seizure ends and recovery begins.  When Erica passed out, it was clear in the brain activity that it was the end of the seizure. 

Getting fitted for a new cap!

 So we are 1 seizure down.  A few more to go.  Going to be a long night.  She is limited to no more than 4 hours of sleep in a 24 hour time period.  Shouldn't be a problem for me...the bed is incredibly uncomfortable.  Maybe I'll try the chair tonight.

Carl and Sam arrived at dinnertime.  We had a great visit. Sam loved all the buttons on the bed, eating dinner in bed, and the chocolate cake too!  As I type, the kids and Carl are watching Antique Roadshow.  The episode is from 1998 and they are replaying it with then and now assessments.  The math teacher in me keeps wanting to shout "What is the percent of increase or decrease in value over the past 15 years?"

Okay...signing off for now.  Good night!

The EEG/Video monitoring has begun!

Yesterday was a busy day of packing and preparing for our stay at Children's Hospital.  Mid afternoon, Erica had a seizure with a very long recovery.  It was as if she passed out after the seizure because I had a tough time getting her to wake and respond to me.  She ended up taking a 4 hour nap.  When she woke, she was feeling up for some friend time at the bowling alley.  Sam and Erica had a blast.  Friendship and family is the best medicine!

Erica and her girls!

Because she had such a long nap during the day, she had a tough time getting to sleep.  Plus she was also very anxious about today.  Erica only had about 4-5 hours of sleep.  In some ways, maybe it is a good thing.  Sleep deprivation is a trigger for seizures, which is exactly what we what for the next few days.

Erica and I checked in at Children's Hospital in Aurora at 10:30 this morning.  We have a beautiful room with a gorgeous view of the gardens. 

Moving in just about everything but the kitchen sink!

Room 616

Beautiful view from the room!

An EEG technician arrived to get her "hooked" up. She attached 27 nodes to Erica's scalp with glue and wrapped her head with gauze to keep the nodes in place.  It took about an hour, but she passed the time watching a movie.  During our stay, Erica will be hooked up to the EEG monitor and videotaped continuously.  She will need to stay in her bed or chair throughout the study.  After the nodes were in place and video recording had begun, she went through a few tests with strobe lights and induced hyperventilation to see if we could provoke a seizure.  Towards the end of her 3 minute hyperventilation test, she began to feel an aura, but it did not develop into a large seizure. 

Nodes are in place and head wrapping begins!

EEG Monitoring Begins

Induced Hyperventilation Test

At noon we ordered our meal and settled into our room.  Erica was so excited that they server buttered noodles and had lots of desserts to choose from.  She enjoyed her chocolate cake so much that it was everywhere in her bed. What a mess!  After lunch, we checked email and texts and were cheered up by so many kind messages and positive thoughts.  Her Algebra class sent her the most amazing video/audio message about what a strong, brave girl she is.  She also received special messages posted on the Children's Hospital website that were delivered to her room.  So grateful to have such wonderful people in our lives.

Message from her algebra class

Messages from loved ones!

Erica is looking forward to having a few friends visit tonight and, although she may not admit it now, excited to see Sam.  We'll post more updates as they come.  Think it's time for a nap...for both of us.  :-)

Preparing for our stay at the EEG Lab

Erica and Sue will be preparing for her seizure monitoring this weekend.  First on our list is getting Erica lots of friend time and getting Sue lots of Sam time.  :-)  We'll be packing and planning for a handful of days of being confined to her room and, for the most part, her bed. We'll also begin to step down on her medicine on Sunday in hopes that it will bring on seizures when we arrive at the hospital.  We will be checking into Children's Hospital in Aurora at 10:30 on Monday.  We'll make daily updates throughout our stay.  Hoping we get the needed information for the neurologists to plan surgical procedures.  Also hoping we won't need to stay the whole week!  Stay tuned.

First week of school

First week of school was overall good for us all.  Sam has enjoyed reuniting with his buddies and really enjoys his 3rd grade teacher, Mr. Warren.
    

       

Kings of the playground!

Sue began her 16th year of teaching math at Preston Middle School.  Where do the years go? She is working part-time this year and hopes that it will help to make for a better balance between work and family.  The students she has this year are amazing and have brought many needed smiles and laughs.

Carl continues to keep busy working crazy summer hours and making time for the kids in the evening.  With any time left over, he is either working on the house or on the ice.

Erica had a fairly good first week at school.  Tues was filled with exciting new beginnings.  She was pretty exhausted by the end of the day, as we all were.  Perhaps the exhaustion from a busy and super hot day was the cause for the seizure she had that evening.  On Wednesday, Erica experienced another seizure during the school day and was relieved that she was able to make it safely to the hallway with her teacher in a more private setting during the worst part of the seizure.  Thursday and Friday were very warm days at school, but she was seizure-free both days.  Overall, she would say her first week was mostly great.

Erica's first day of 7th grade