Monday, August 25, 2014

Flower Girl

Here is Scarlett's flower girl debut!
At the rehearsal



All glammed up!





With papa




With Best Man Daddy




Uncle Danny and Auntie Allie

Up bright and early the next morning for the first day of school!

Wednesday, August 20, 2014

Summer

It's been a long time since I've had a chance to write.  I've gotten several messages asking how she is doing.  Thankfully, we've been busy in all the good ways.  I went through the pictures from the last few month to see what has not made its way here...we'll have to back up a bit.

For Mother's Day, we all went to Reno to visit my great grandma, Scarlett's great-great-grandma. 





We have spent the majority of the summer chasing her - she's everywhere!  This is her using a laundry basket as a stool, as the new stool we bought sits a few feet away.

We got a call one day from another brain tumor momma whom we met at camp.  Her daughter Audrey had recently gotten a play house from the Habitat for Humanity Play House Project.  They were looking for another little one to give a house to...and we were available!  A team from Samsung, as part of their team-building exercise, had two houses ready to go and no kids to give them to.  We were on it!  That evening, we watched as they finished painting, constructed and modified an adorable play house for Scarlett.
Adding her handprint
Checking out her new digs.  They made Scarlett's house wheelchair accessible - not knowing that she wouldn't need that - which allows her to ride her bikes through without slowing down!



Now it is pretty much her favorite hang-out spot.
 She is a big fan of purses.  Her favorite is a retired Seatbelt Bag of mine; she prefers it empty, despite how many times I have showed her that things can go inside.  She swings it over her shoulder and takes off.
 Once my school got out in June, we had several adventures....camping with family was first.  Then a Giant's game at AT&T park, 4th of July parades, and a few perfect-weather beach days.  Chris and I went away for a few days where I attended the I Teach K kindergarten teacher's conference by day, and we explored the city by night.  Grandma stayed home with Scarlett, and got her workout from the little lady!   Scarlett "graduated" from the toddler class at her school, and will be starting the preschool class next week!





The most amazing thing?  We have had only a tiny tiny handful of appointments this summer.  Scarlett was originally scheduled to have surgery in July, but with the seizure activity in June and new medications to balance, we all decided it was best to wait.  Since we left the hospital, we have seen NO seizures.  She has weaned off of some of the medications, and is down to just one mild seizure control med, which is very tolerable for her and us.  If this keeps up, she will have her reconstructive surgery around December.  Until then, I am enjoying her full head of hair...



We haven't gone a day without commenting on how she is developing.  She signs/speaks (usually together) constantly.  She has learned so many new words in the last few months...bus, watermelon, star, night, butterfly, hungry, train, colors, body parts, animals...we stopped counting a while ago.

She is a dancer.  Any music comes on, and she is moving.  I won't say she has great form, but she has enough enthusiasm to cover it.  She jumps, kicks her legs out, stomps, wiggles, shakes and

Beach lounging with Uncle Danny
This weekend, Scarlett will be the flower girl in her Uncle Danny's wedding.  There are several lists of things to do, especially since school starts for Scarlett and me the next day!  We'll be incredibly busy for a few days, but it should be a good time.  I promise I will post a pictures of her in the dress I made for the wedding before Christmas!!
Flower girl preview!
Here's all the videos I could upload - enjoy!!

Sunday, June 15, 2014

Seizures

We are home after a 5 day hospital stay.  Yuck.
Let me out!!


Baby jail

Scarlett has been having visible seizures for a few months.  For the last few years, she has had none (that we knew about); it was one of the few "expected" brain tumor effects that we weren't dealing with.  We noticed them right around her last MRI in March.  Her doctors tell us they can just start sometimes, with no new cause.  We had an EEG in April when we thought they were increasing; with confirmed seizure activity then, we began medication for them.  A few weeks later, when the medication did not seem to have any effect, we increased it.  And then increased it again.  Then saw another neurologist, who added a second anti-convulsant.  None of the medications worked, and the seizures have continued to increase in frequency.

Her seizures are not what most people think of: she does not fall to the ground convulsing.  The typical pattern is that her eyes tick to the left repeatedly, her left hand opens and closes and her upper body twitches for 5-10 seconds.  As soon as it is over, she is back to whatever she was doing, unphased by the interruption.  Sometimes, she continues to move - putting food in her mouth, playing with a toy - through the seizure.  If she is walking, she seems to sense it coming and can fall to her hands and knees safely, seize, then get up and keep going.  It is strange, but not particularly invasive to her.

On Tuesday, she had another MRI.  It was perfectly clear, so we are sure that this is not tumor-induced, which is fantastic.  However, that leaves a long and arduous list of possibilities.  We knew the seizures were continuing to increase in frequency, and we estimated 10 a day - that seemed like a lot to us.  As we sat in the clinic room with the nurse practitioner, Scarlett had 5 in less than an hour.  That prompted a discussion about how frequent they are really happening.  It was a startling realization that with that kind of pattern, she was likely having upwards of 50 a day.  This prompted her team to speed up their planned evaluations, specifically a 3-day long EEG that would give them a chance to look for patterns and a source of the seizures.  That day, Chris drove Scarlett to the hospital in the morning for the MRI, then home; back in the afternoon for clinic with me, then home again; when we got home, we got calls from the hospital that they had a bed, and they were ready for her that night.  She was admitted by 7:00pm.

EEGs measure electrical activity in the brain.  The patient is fitted with electrodes to pick up changes in the brain activity.  As the brain functions, it creates waves on the monitor connected to the EEG machine.  Seizures, which are like electrical surges in the brain, show as sharp spikes and abnormal waves.  Since Scarlett has had some strange behavior along with the seizures, they did a video EEG, so we had a video camera trained on her (and therefore us) at all times so that the doctors could compare her brain activity with her behavior in the moment.  To help the doctors track the seizures, we were to push a button when we saw one; that would mark the time and we would type in notes about what she was doing or what we saw.  The doctors were very impressed that Chris was catching almost all of the visible seizures within seconds.


In the first day, they got a reading on the actual frequency of seizures - more like 15 an hour, hundreds in a day.  And that's with medication already firmly established.  We only see some of them - they are often absent, where she might just blank out for a few seconds, others still follow the same twitching pattern we have seen for a few months.  Over the last few days, we have tried several things to get a handle on them - varying medications at varying doses and steroids - and are just now starting to see a change that we hope will stick.  She went down to 5-10 seizures a day early in the weekend, then only 1 in 12 hours overnight.  With that, they let her go, and will check in again soon to see where we are.


It's been wild, since this was the last week of school for me and I had to be packed up by Friday afternoon for construction to begin right away (and, in fact, they started on Friday, moving all my organized piles to the middle of the room to "help" me!)  Chris spent 3 nights back-to-back in the hospital while I visited in the evenings.  Finally, last night, I was free, so I stayed while he got to sleep at home.  We're readjusting to hospital life - we haven't been inpatient at Stanford for a really long time, and things are different (mostly for the better)!

Don't touch my baby!

The biggest change for us in hospital life is Scarlett.  She is mobile and gets bored quickly.  When she was an infant, she stayed in the crib or our arms without much complaint.  Now, we are managing a jumping, climbing, walking escape artist!  The medications kept her more sedated than usual, but she is still pretty lively.  With the EEG on her head, and the video monitor on her, it's quite cumbersome to move around, and she easily got tangled or stumbled.  Her favorite way to fill the boredom was to either eat - primarily graham crackers with crumbs everywhere - or to scoot her toy train around the room.
Jumping on the chair while wired up.
 



Just plain bored.
Despite the many toys we brought, she found the soiled linens bin to be most engaging.

The next steps are vague - there are many approaches to seizure management, and we are getting an overwhelming amount of information about them all as we learn more.  The doctors are working to find a medication solution that balances the sedation effects with effectiveness - stopping as many seizures as possible with the least impact on her daily life.  This is proving difficult, but is critical before the next phase is discussed: surgery.  She is slated for cranial reconstruction in July, so we need to make some big decisions on how to move forward.  According to our doctors, they would usually take several months to try to manage seizures before even discussing surgery.  However, with a brain surgery already on the books, we need to seriously look at the options before we move ahead or close any doors.

Daddy helping entertain her while the technician cleans glue and tape from her hair.

Cruising the hospital halls in the new push car - the highlight of her stay, besides ice cream on-demand.

It's great to be on the other side of that stay, and hopefully we stay out for a while, seizure-free.

Wednesday, April 23, 2014

March and April Recap

Here's what Scarlett has been up to lately...

She had an EEG to measure seizure activity.  Her seizures were confirmed, and she started a new medication to help manage them.  The seizures are still present, so the medication will need some tweaking, but none of it is interfering with her days.
Wired up for EEG.  She was sleep-deprived for several hours the night before to help increase the likelihood of catching a seizure during the test - torture for her and us!
Ice cream parlor for mommy's birthday
She has a new fascination with purses - carrying her own and emptying mommy's!
New occupational therapy goal: dressing herself.  We have a ways to go...
Carousel ride at Happy Hollow


We went to Jack's Camp with other brain tumor families.  It was a great weekend!





Scarlett did several Easter Egg hunts in the last week.  By the time Easter actually arrived, she was starting to get it, and enjoyed opening her eggs (filled with stickers!)  She got dressed up and played with her cousin Caleb.




Helping daddy blend her meals for the week.
Playing horsey!
She got her new and improved hearing aids a few weeks ago.  They needed a few tweaks from the audiologist, but now they're running full time and she wears them with no complaints.  They are really high-tech - with a digital microphone that we can use to enhance our voices for her, a connection for her iPad to directly go into her hearing aids, and self-adjusting features that maximize her access to the sounds around her.  Plus, they're pink.  Always a plus.

The biggest new development is that Scarlett is walking independently!!  She has been taking a few steps between people for a while, but last week, she set her mind to it and just started walking around the house. 

She started with a few steps (surely in part because of her fancy cape from Cape4Heroes!)

Then, last week, we snuck around the corner of the living room to see this:


Now, she's on the move everywhere she goes!  At school, she follows the other kids around and does a good job dodging them as they play around her.  She can stand on her own, pick things up and carry them.  She tries to sign while she walks, but still needs her arms for balance. I am not sure what finally changed after a year of using the walker, but she decided she was ready.  Yesterday at physical therapy, we officially returned the walker, and even got the OK to have her wear regular shoes (without braces or inserts) for a while!

Last week, my article was published in the Narrative Inquiry in Bioethics journal.  It's one among a collection of stories from parents who have children with pediatric brain tumors.  I am very proud to have contributed to this, and hope that doctors and other professionals will read it and gain some insight into parent experiences that will benefit families who go through the same things in the future.  If you are interested in reading the journal, you can access it here or with Project Muse access (with a university or library affiliation).  Just for fun, I searched for myself in Google Scholar...
There I am!  Somehow second when I search my name, but there.

Tomorrow, we visit the neurosurgeon to discuss plans for her next surgery to continue rebuilding her skull.  We're hoping that he can continue to wait into the summer, when our schedules all calm down a bit...we'll see how patient he can be.  The idea of surgery now - days (weeks?) in the hospital, trying to keep this new walker from escaping her crib...ugh.  Procrastinating won't help, but it is the least amount of fun I can imagine for our summer.