Thursday, October 15, 2015


Nearly 5 years ago, we sat together in a small clinic room with a doctor and nurse practitioner.  We had left Scarlett, just a few days out of surgery, in the hospital with my sister nervously watching her while we traveled down the Bay to see the doctors at a separate hospital.  We joked that it was the closest to a “date” we had had together since she was born 3 months earlier.

We were there to learn about the chemotherapy regimen we would be embarking on with Scarlett.  The first hurdle – removing the massive, deadly tumor from her brain in two 12-hour surgeries – had been jumped.  The next stage was much longer, and much more mysterious to us.

We listened carefully as the year-long process of killing our baby’s cancer cells was explained to us.  She would need to be in the hospital for days, maybe weeks, at a time.  She would need an implanted port catheter to allow chemo to be pumped into her body, as well as blood when she needed it.  She would need additional medications to help protect her other organs from the poison.  She was going to be very, very sick.

We were obviously distressed.  A box of tissues seemed to magically appear in every one of these tiny rooms we had visited over the last few weeks, and I put them to good use.  We had planned the start date, with another minor surgery, as soon as she was expected to be released from the surgeon’s care at the other hospital; there was no time to wait, process or deliberate.

We needed to know – is this going to work?  Are we going to put her through this torture for no reason?  If she is going to die anyway, shouldn’t we just let her die peacefully?  The doctor told us: Let’s look ahead to why we are doing this.  Let’s think about what we might see when she is 5.  She might have some issues with her hearing, maybe her vision.  She might struggle with balance.  Math might be harder for her than other kids.  She will walk into kindergarten.  She will go to school with other kids, and she can be happy and learn.

We hung on to that.  We have fought every single day for 5 years for that image.  We have believed in her when no one was sure.  We have agreed to medicines, surgeries, procedures, therapies and trials, all with the belief that if we kept pushing, she could do exactly as he said so long ago.

And today, she turns 5 years old. FIVE!  And she has plenty to show them.

She is not a baby anymore.  She is almost 40 pounds! She walks, or runs, everywhere, unless she doesn’t feel like it (“HUG!” she demands.) She sings constantly (while I type this, her song of choice is “Row, Row, Row Your Boat.”  Other hits include “Twinkle, Twinkle Little Star” and “Jingle Bells.” Every song ends with “Yea!!” and clapping.)  She signs and says "I love you" all day long.  She loves mermaids, graham crackers, baby dolls, toy cars and the color purple.  She asks for foods she wants – yogurt (with a “spoon!”), grapes, apples, bananas, watermelon and peas rate highly.  Everyone is her friend, and gets a hug, high 5 and fist bump, but no one outranks her cousin Caleb…though she is fond of kissing her baby cousins, too!
Scarlett, Andrew, Olivia and Caleb

She speaks in single words most of the time, but with the prompt of a sentence, she tells us “I.want.a.cracker.” She has mastered “NOPE,” and it is usually her first response; however, if she’s excited, she says “OOH!” and claps her hands over her head.  

First day of school 2015
We’re working on potty training.  It’s been a while, and it’s going to take a while, but we’ve made progress and we’re pushing ahead.  She can get clothes off (a favorite pastime of hers!) and helps to put them on (not as exciting).  She does not like having her hair brushed, but does enjoy choosing the bows for her hair.  She insists on her jackets being fully zipped, and her shoes before going outside (“SHOES!”) She can navigate her iPad about as quickly as I can, and likes to listen to songs and do puzzles, and asks to wear her headphones (which mommy and daddy appreciate!)

At her IEP last month, we solidified the goals for the next year.  She can currently count to 10 and sing the alphabet; she will be working on identifying numbers of things and the letters in her name.  She knows colors, animals (plus sounds – “MOO!”), and is working on shapes.  In fact, when we tried to count the words she knows, both spoken and signed, we lost count at about 150.  We know she understands far more, like “Go close the door,” “Where are your shoes?” and “Caleb is coming!” (which we only say when he is in sight, or else she cries at the window until he appears!)

With Caleb!
We are phasing out some things…physical and occupational therapy only once a month…MRIs only every 6 months…port removed last week…no more surgeries!
Boo boo face!
But that’s not to say everything is simple.

There are many challenges ahead.  We are fighting for an effective feeding therapy that will allow her to eat without using the G-Tube.  We are currently waiting for an official denial, which we will protest, which will be denied again, which will then allow us to apply for outside funding. 

She should be entering kindergarten next school year.  We are very torn on how to handle this transition.  She is so much younger than her age suggests; is she really going to ready for a school with bigger kids? We do not know what school she will attend once she is finished with preschool – there is no school program near us that sounds like a god fit.  She is making progress now, thanks to the intense level of support she is receiving.  How do we leave that behind for a mystery? Right now, our best plan is that she continues in preschool an additional year, until she is nearly 7, since we know her needs are being met there.  It would give her a year to grow and mature a little more before unleashing her on a bigger school.  Her IEP team (10+ of us!) will come together a few more times over the coming months, tour possible programs, watch her progress, and discuss our options as time goes on. After that, there are decisions to be made, priorities to be decided.

We requested a behavioral evaluation.  We are very concerned about some of her behaviors, especially those that are dangerous (like walking into streets), self-injurious (like biting her hand when she is frustrated, to the point of calluses and broken skin) or painful to others (pinching, biting, smacking, hair-pulling).  She is constantly searching for sensory input, whether it is loud noises, vibration, or tight squeezes; this deep need for incoming sensation drives her and us to keep looking for the next new feeling, and it never seems to completely satisfy her.

She will also be evaluated for an Augmentative and Assistive Communication (AAC) device.  They will test to see if some kind of picture communication system (either using a tablet or just printed pictures) could help her express herself better.  Since her receptive language (what she understands) is much more extensive than her expressive language (what she uses, both speech and sign), this type of device or system might give her a way to communicate more.  We were hesitant at first – no more devices! – but see her frustration, and hope to find a way to give her more ways to communicate.

She is still small.  Her weight is about the 50th percentile for weight, but only about the 10th percentile for height.  We are backing down on calories to find some balance. Her doctors are monitoring her height closely, as many kids who have been through what she has take growth hormones.  She lost 2 teeth over the summer!  The big, new teeth in the front of her mouth look out of place…and are pushing the other teeth in her still-tiny jaw out of place, too.  We’ve been referred to a more specialized dentist.

Chris and I are still trying to learn what normal life with Scarlett means.   I have moved to teaching first grade from kindergarten.  My heart was torn over this decision, in part because the kindergarten students I would be teaching are 5…and I would be face to face with Scarlett’s differences every day.  I was afraid, anxious, and just overwhelmed at that prospect, so instead of facing it with a brave face, I fled.  It wasn’t the only reason, but it was a piece.  I am enjoying the change, embracing the opportunity to push myself a little more.

Chris is still the full-time manager for Scarlett.  He drives her about 90 minutes to school each morning, then hangs around the school (volunteering in classrooms, taking classes with other parents, and even being hired to do some work in the business office lately), then drives her home.  After the last several months of this strenuous schedule, we have a new schedule in place that we hope will begin soon; it includes a few hours of her school’s on-site day care 2 days each week, and a chauffeured (taxi) drive home (compliments of the school district, which currently pays for our mileage).  This, in conjunction with 30 hours a month of respite care at home, help to give him some time to make phone calls, go grocery shopping and just do something for himself each week.  It’s an exciting prospect for us both!

On vacation in Maui

 We are still learning the ins and outs of the “system” for special needs children.  System seems like a joke, since there is very little connection from one step to the next; there is no guide, no manual, and very few experts to which we can refer.  We currently deal with:
  • California Children’s Services (CCS) – medical services for medically fragile children in California.  Scarlett is under the “full scope” coverage, which means most medical appointments, procedures, medical therapies, appliances (like orthotics and hearing aids) and medications are covered
  • Medi-Cal: Chris receives pay via In Home Supportive Services (IHSS) to make it possible for him to stay home and care for Scarlett.  He gets paid for performing all of the needs that would otherwise require specialized care (dressing, diapering, tube feeding, food preparation, medical appointments, etc.)
  • Regional Center of the East Bay (RCEB) – County-based services for kids with special needs.  Currently provides diapers (and pull ups!), 30 hours/month respite, and soon a full time aide to allow Scarlett to participate in the “regular” child care offered at her school.  When CCS officially declines feeding therapy twice, we can apply to have it covered by RCEB.
  •   School District – Provides out-of-district preschool, including speech therapy, occupational therapy, physical therapy, behaviorist, and transportation to school.

It’s a full time job to deal with the paperwork, phone calls and appointments.  For instance, Chris has made follow up phone calls, e-mails and office visits for over 7 months waiting for an approved document…and it has still not arrived.  Every time we are told it is in the mail, it doesn’t arrive.  So we call again, wait for a call back, clarify what is needed next, yet again, and wait, yet again.  If it is this difficult for us, I wonder, what would it be like if we did not speak and read in English?  What if we simply could not afford for him to be home to make the endless phone calls?  As we have seen for nearly 5 years, the system in place is not intuitive, and parents must often fend for themselves.

We chose to throw a birthday party instead of a blood drive this year.  Scarlett understands cake, candles, and the Happy Birthday song, and so we wanted to give her a chance to enjoy that.  We don’t really have the bandwidth for two big events, so party it was.  Last weekend, we surrounded ourselves with Bubble Guppies and friends.

She had a blast.

From here, we can only go up.  We are watching, practicing and trialing to learn how Scarlett learns.  We are trying to celebrate even the smallest triumphs, because some days, we need to distract ourselves from the struggles we encounter.  We worry.  We take turns being the one to panic over simple things like fevers and upset tummies.  We teach her jokes and tricks to make her giggle. We try to appreciate her as she is, find joy in her now, rather than focus on what to work on next…and sometimes we succeed.

 I wonder where we will be in 5 more years.  As long and arduous as it has been, I look at her and can’t believe this climbing, chatting little person is the frail baby I held back then.  She’s so different, so strong.  I’m different, too.  We are taking the next steps together.

Saturday, April 11, 2015

Spring Break Update

It's the end of our Spring Break, heading into the home-stretch of the school year and some crazy weeks around the house, so I though I would try to sneak in an update.

First, Scarlett is doing amazingly.  She is EVERYWHERE - running, climbing on everything, up and down stairs, and just about as mobile as she can be.  She is still wearing a brace on her left foot to help support it, but even that is making good progress (her ankle is no longer rolling in).  She is FAST, and gets away from us if we're not watching.  We had our first real stroller-free family fun outing to the Bay Area Children's Discovery Museum yesterday - Scarlett walked herself everywhere, and asked for a "huuuug" when she needed a break.

She is eating better.  She suddenly decided she likes yogurt, so she can eat an entire 6 oz yogurt cup now, and it is starting to carry over to other purees like baby food.  We have been using the pouches of baby food to feed her by tube for years, so now to be able to feed her at least some by mouth is great.  It's challenging to be feeding a 4.5 year old in the same manner that you would feed a 1 year old - adult holding the spoon to keep her from throwing it everywhere, tiny bite-size pieces of finger foods, bibs, walls splattered with food...but we're making progress, and that's what we try to focus on.  We are waiting to hear on a feeding clinic we hope to work with - they have a good track record with G-Tube fed kids, and will work with her at home and school intensively rather than a weekly clinic or missing school for other intensive clinics.  The only hang-up is the months-long approval process that any kind of private therapy takes to get coverage.

She LOVES school.  She always has, but she is really able to show it now.  She is learning a lot - she knows several colors, sings several songs, can count to 10, names many animals, body parts, and familiar things.  Something things she uses her voice - counting, singing, saying "Hello!" - and other things she signs - for help, to turn on lights, for foods.  Her school focuses on using both, and it seems to be working for her.  We feel like we are on he cusp of a big language growth spurt, as we are starting to understand her much more often, and she is beginning to understand the benefits of using words and signs to communicate - she gets what she wants when she tells us what it is!

She's still waiting for surgery.  We scheduled it 6 times - SIX!  It's been almost a year since she was first scheduled to have it, and she has somehow wormed her way out of every single time. Now, things are wild again, so we think that we will probably just wait until summer again.  We're waiting for a call back from the neurosurgeon's office to attempt another one...we'll see how that goes.

The wildness...things have gotten a little crazy in the last few weeks.  First, the new baby cousins arrived!  Olivia and Andrew were born on March 29.  They were a few weeks early, so pretty teeny still - 5 lb 4 oz and 4 lb 14 oz - but are doing well and were all home by Easter.  Scarlett isn't really too interested in them, other than to give a wave and a kiss and then get back to playing.  She's a good distraction for her cousin Caleb, who is adjusting to big brother life.  I'm getting my baby snuggles as much as I can!!

New baby cousins Andrew Douglas and Olivia Michelle
Scarlett and Caleb snuggling on Easter

Then, we found out we have to move.  We have lived in our house for a little over a year, and just signed the new lease in February.  Then...the owner passed away.  We always knew that if she were to pass away, her family would have to sell the house.  When we signed the lease, it seemed all was fine, and then it very quickly wasn't.  Since the lease was signed, we had until it ended next January to find a new place and move, so we weren't in a rush.  Then, a coworker suddenly had their renter give notice and needed to find someone new...  BAM!  Now we're moving in a few weeks.  The rental market is tight here, and expensive, so it's a gift to not have to search and to be able to save a little every month on the new place.

Before the move came about, Chris took on some new roles, too.  Several months ago, he was asked to join the local special needs family resource network as a parent advocate.  He did a training over several weekends, and then was asked to attend a summit in Sacramento to address some legislators about big changes coming to medical coverage for kids with special needs in California.  From his contributions there, he was asked to participate in two work groups that are building the legislation for the new programs that will provide medical coverage for complex kids like Scarlett.  He is the only parent on one of the committees, working with medical professionals, hospital administrators, legislators and others to shape who will qualify for what kids of care, and how kids as complicated as Scarlett (and those with more) will have the continuous coverage and services they need.  He really hopes to bring some fluidity of care to families who are not able to navigate the system as we have fought to do for the last 4.5 years.

That's not to say he has it all figured out - he spends the majority of his days trying to manage the things we already have in place.  Most recently, he has battled in home supportive services (IHSS) for an adequate number of hours.  This program pays him to care for Scarlett in place of a hospital or professional facility - basically makes it possible for us to have a full-time parent to care for her.  He fought to have them more accurately assess Scarlett's daily needs to modify the hours he is paid for - things like diapering, mobility, feeding, food preparation, dressing, appointments.  She qualifies for things that are outside of "typical" age - like diapering, since she is 4.5, as well as things that would have to be done by a trained medical provider - like tube feeding.  It's been an uphill battle of documentation, interviews and follow up with in person, since the phone system has been non-functioning for 3+ months.  It's in the final approval stage, so it's looking like a win!

In addition, he has been nominated as Volunteer of the Year in our city for his work in my school's garden.  He didn't win his bid for school board, but that didn't stop him from pursuing his pet project of the garden, as well as signing up for the area special education oversight committee.

The days are full of the good kind of busy.  Hopefully the summer will bring some vacation, because we are going to need it!

Thursday, February 12, 2015

Surgery tomorrow? Nope.

Scarlett has successfully avoided this surgery 5 times now.  Once in June, when she suddenly started having hundreds of seizures a day, and then abruptly stopped (and hasn't had a single one since). Twice in December, first for an emergency and then for a cough that developed the morning of the surgery. 

Last week, Chris arrived for the scheduled pre-op appointment to be told "There's no surgery scheduled for this week."  After some high-tension phone calls, we were told that somewhere along the line, the message was crossed, and there was never a surgery scheduled for February 6.  Chris solidly remembers the conversation where it was scheduled, but that doesn't change what was on the surgeon's schedule.  In their minds, it was always scheduled to be the 13th.

So, this week we were ready, yet again.  And...bam.  Runny nose.  Coughing when laying down.  Waking in the night.  We called Wednesday to check in, not wanting to go to the lengths we did before only to be turned away after putting on her surgical gown.  Surgery checked with anesthesia, and they shut it down.  So, no surgery yet again.  We'll try again next month.

We're going to enjoy our Valentine's Day at home, gardening and working on projects for the new baby cousins!!

"Hello, Doctor.  I won't be coming in for that surgery you keep telling my parents I need.  Maybe next time!"  

Friday, February 6, 2015

Scratch that...Next week

Don't have time for much, but the bottom line is that surgery is now next Friday.  Apparently what we heard as "February 6" was actually "February 13"...not sure how that happens.  I think we would have connected that we scheduled a surgery on Friday the 13th...and the day before Valentine's day, which is a long-running theme in Scarlett's life.  Anyway, one more week of freedom for the little one.

Monday, February 2, 2015

The Surgery that Wasn't (But Will Be)

You probably think we fell off the face of the earth. We didn't.

I'm sorry!  I was so burned out after the surgery planning...and then the day came.

It was scheduled for a Tuesday.  We had worked really hard to plan out all the details - all of Scarlett's classes, therapies and appointments had been rescheduled; I had 4 days of lesson plans for my class, including their field trip and holiday party; we were ready.

Which, really, should have been my first clue that things were bound to derail.

The neurosurgeon's office called Monday afternoon to tell us they had an emergency case that would delay Scarlett to Friday.  It was frustrating, but we understood - we have been that emergency case more than once.  I talked to my boss, and together we agreed I should just take the scheduled time off since I had already done all the planning and the students and parents were already prepared.

Instead of work or sit in the hospital, I spent a few glorious days just relaxing - taking Scarlett to school, finishing shopping and wrapping gifts, and planning for holiday cooking.

On Wednesday, she went to the pre-op appointment, and was cleared for take-off.  On Thursday, they called to confirm times and that she was still well. We made sure to make a last minute stop at Santa's workshop, then did the pre-surgical bath, packed our bags, read our books about the doctors and hospitals once more, and set our alarms for the early morning trip to the hospital.

I am pretty convinced that she wish for a no surgery Christmas from could he have resisted?
Then came Friday at 5:00am.  We were all groggy and anxious.  We started driving, and then we heard the dreaded sound from the back seat - COUGH.  COUGH.  COUGH COUGH COUGH.

We checked in, but the first nurse who heard her through the curtain shut it all down.  She called all the doctors and OR and told them all she was sick.  She didn't both to tell us she was refusing to allow her to go through for a solid hour into waiting - after we had done all the pre-surgical checks, changed her into a gown and even had an anesthesia resident okay her (I made a stink about that!!)  In the end, they didn't feel it was worth the increased risk of pneumonia or infection for an "optional" (not emergency) surgery.
She sure didn't LOOK sick.

After that, we were in a funk.  We had been so revved up, it was hard to come down without the desired result.  I felt like I cheated my class, did a ton of extra work and was just going to have to do it all over again.  The next few days were grumpy, even though it really just meant that we would get to be home and enjoy the days before Christmas without pain medication.  

In fact, Scarlett and I both ended up pretty sick by that point.  Coughing, fever, all the delightful things that would have made her SO sick had they gone through with the surgery (I recognize this in hindsight, of course...)

So, then came Christmas (with me sick), New Years (with Chris sick), school starting back up and...well, here we are in February.

Helping mommy bake cookies for Santa

The good news is that we finally got her surgery rescheduled for this weekend.  She is SCHEDULED to go in Friday morning and get this whole thing over with.  It's a 3 day weekend for me, so that helps ease the workload; Scarlett should only miss a few days of school.  We'll see...I know better than to try to plan too closely this time!

Christmas Eve with her best bud and cousin Caleb
Spoiled rotten by Santa, mommy, daddy, grandparents, great grandma and aunties and uncles.
Helping Peter Pan walk
Testing out her new sleeping bag - she napped in it for days afterward.

Test-driving her new wheels with her favorite co-pilots

Loving Elsa at her friend's birthday party
Last weekend...all the adults are tired of pulling the wagon, but the riders are waiting...
"Helping" mommy build the baby swing for the new baby cousins