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

Thursday, December 11, 2014

Surgery #15

For the last 3 years, we have been working on fixing Scarlett's skull.  It's finally time for the last step!

School was canceled today due to stormy weather (the first time I have ever heard of that around here).  I got to go with Chris and Scarlett to both appointments - neurosurgery in Walnut Creek and neuro-oncology in Palo Alto.  Unfortunately they landed on the same day, and there was no way to reschedule.  We drove a lot, in sheets of rain, with lake-sized puddles on the freeways, but we made it to both appointments.

 First and foremost, the neuro-onc appointment confirmed what we have waited two weeks to hear - her MRI is clean, no signs of tumor!  Hooray!  The rest was a lot of catching up, us sharing all the great things Scarlett is doing, blah blah blah.

With the neurosurgeon, we discussed his plan for surgery.  A little history...

At 6 months old, Scarlett's first shunt failed.  It was removed and replaced with a new one...the wrong one.  The wrong shunt (a non-programmable type) over-drained and, since her skull was still healing after the tumor was removed from below it, it collapsed.  She was in no pain, but too sick from chemo to undergo the surgery to repair it.

After chemo ended and she was safe for surgery, we had the first cranioplasty.  At that point, her skull looked like this:
At about 18 months old, she had surgery to reset some of the bones in her skull to allow them to heal and grow correctly.  Her head was relatively round, a fact her neurosurgeon is very proud of. 

Then came the relapse.  More tumor, more surgery to remove it, more chemo.  During that time, the bone as not able to heal correctly, so it started to collapse again.  It is not as serious a it was, but needs to be repaired.  This was scheduled for June, when we were all out of school...until the explosions of seizures the week before.
We all decided that we needed to know where the seizures were going before we decided to go in for surgery - it was a possibility that she would need some type of surgery for the seizures, and we did not want to do anything twice, or that would put the new skull into jeopardy.  So...we waited.

Now, it's another school break.  Scarlett and I are both taking the last 4 days before the holiday break to have surgery.  On Tuesday, December 16, she will go in for her 15th surgery (1 biopsy, 2 resections, port, a bunch of shunts and repairs to shunts, g tube, first cranioplasty, another shunt, another resection, another port).  The surgeon is hoping to be able to use her own cranial bone to create some new bone (some sort of splitting and mesh-making...I don't really get it).  He is not sure that her bone is thick enough to be used in this way.  If it is not, then he will use a bone paste to create a new layer over the current hole.  Either way will allow her skull to grow more normally, and be safer when she falls.

He is very optimistic that she will be out in two days...I think we will be happy to be home by the weekend (when he leaves for vacation!)  From our previous experience, Scarlett will have some major swelling and need heavy duty pain medication for a few days.  This was difficult with a one year old the last time she's 4.  She can walk, climb and fight against us (and the nurses).  She is starting to have some fear of doctors offices and medical procedures (like blood pressure cuffs) that were previously not a problem for her - which is normal and typical for a preschooler.  It's going to be difficult for her and us.

The good news is that, since this is the last surgical procedure we expect her to need - maybe ever? - she will have her port removed in February.  We already made the appointment, so it's on the books!  She has had a port for all but about 6 months of her 4 years - she is ready to have it out of her chest!  Once that is done, we will only have MRIs and regular-kid maintenance, along with check-ups.  No more huge surgeries looming over us for years at a time.  Hooray!!

The reward for all this hard work is Christmas!  We will get out of the hospital and it will be time to finish (start??) wrapping gifts and baking.  Every year, Christmas seems to be the time when everything comes down on us...this year, at least it is planned and expected.

Our decorations are up, most of the gifts purchased, and plans for family fun in the days around Christmas are planned.  We just have this one little thing to get out of the way first.

Monday, October 20, 2014

One Two Three FOUR

Last week, Scarlett turned FOUR!

Can you believe it?  If you're still reading my sporadic updates, you've probably been around a while, and, like me, are completely floored that we are already at 4 years old.

This was the first time we felt like she would appreciate at least some part of it being her birthday.  She loves the "Happy Birthday" song, balloons and cake, so what more did she need?

She woke up to a room and bed filled with balloons...

At school, her friends presented her with handmade cards.  She also walked around a candle to represent her 4 trips around the sun, and shared pictures of her throughout her life.
School cupcakes
That afternoon, her cousin came to play while we put together her birthday present: a new trampoline!  We have been fighting to get her to stop jumping on the couches and beds, and thought a sanctioned, safer jumping space would help.  Then we saw this one on Amazon and we thought it would work well - and it does!

 She can jump to her heart's content in there and I won't worry as much as I do when she's on the couch.

We wrapped it up with more cake - she blew out her candles (with minor help) and dug in!

4 year old Scarlett is a delightful handful.  She is full of energy, and we jsut always hope she will use her powers for good rather than tantrums.  She loves school and her cousin Caleb.  She carries on full conversations in her own babble-speak, but also knows enough words to communicate exactly what (or who) she wants much of the time.  Her favorite word is probably "no"; my favorite of her words is "flower", which she pronounces "wow-ah".  She signs as much as she speaks, and when she puts the two together, we understand her best.  She is getting better at just imitating what she sees or hears, so we hear more from her.  She likes to count and sing.

She's a daredevil.  She climbs on everything, and wants to go as fast as she can.  If we turn our backs, it is not uncommon to find her standing on the kitchen table after climbing up the chairs, or hanging upside down on the bed looking at herself in the mirror.  She has favorites - food (cookies and cake); toys (babies and animals); clothes (pink dresses...sigh.); people (Daddy and Caleb); places (school); shows (Signing Time and Super Simple Songs); books (The Hungry Caterpillar, in which she pretends to eat every food with a little "nom nom nom" as we read).  She likes to be given a choice in what she wears or eats, which is just more of that 4 year old personality coming through.  If she agrees, it goes smoothly; if it is not her idea, we have a battle ahead.  Most of the time, she is quite the charmer.  She smiles, giggles and tickles everyone she meets (even though it sometimes feels like pinching) and loves to hold hands while she walks.

Her best buds.
 This girl amazes us day in and day out.  She surprises her specialists and therapists every time they see her, and those who have been with us since  the beginning take as much joy in her as we do.  We are proud and just plain happy to have her around.

Here's to a year of more firsts.

A few more pictures from the last few weeks...

At our alma mater high school's cancer awareness game.

 Our fourth blood drive was smaller, but we still collected about 40 units of blood.

 Pumpkin patch with the family...which is growing by TWO come Spring when Caleb becomes a big brother to twins!

Walking in with GG

Those sassy hands on out!