Monday, February 17, 2014

Valentine's Day 2014

V-day has come and gone once again, and I feel like this year we really made progress.

To recap:
Feb. 14, 2010 - I found out I was pregnant.
Feb. 14 2011 - Scarlett's first dose of chemo.
Feb. 14, 2012 - Scarlett had surgery to place a feeding tube.
Feb. 14, 2013 - quiet...sitting at my parents' house.

Last year, we were doing well, but this year, we set a goal of being moved out by Valentine's Day...and we did it!

There was nothing too fancy about our Valentine's day - it was exhausting at school that day (me in the classroom with 25 sugared-up kindergarteners and Chris working in the muddy garden) so we were both happy to sit and enjoy a nice dinner at home with Scarlett.  I couldn't help myself from thinking about how much has happened in the last 4 a way, we've come full-circle, with Scarlett doing so well and back in our own place.  I know better than to think it is complete - we're never out of the woods with this tumor - but we are back on track to feeling like we are making forward motion, and it feels GOOD!

We're all moved in to the new house now.  It's great - Scarlett has a playroom (that we share as an office and sewing room); we have a big kitchen that fits all the great stuff we have had in storage for almost two years.  A big garage for storage, a backyard to play and garden in - so much space!  We are still getting settled, but it's all going well so far.

We have been working on filling up this big house, since the combination of a much smaller previous home with the purge of moving into storage two years ago meant we had very few big pieces.  We couldn't get too wild, so we have limited ourselves to Craigslist, thrift stores and hand-me-downs.  We have done great so far - couch and loveseat from Craigslist for $75, rug from the thrift store for $30, and several small pieces from friends and family who are downsizing.  We even got a great rocking chair and entertainment center (which we are using as a coffee table for now) from a blog reader nearby (Thanks, Jamie!  Sorry again that Scarlett was so grumpy!)  We did get one big gift: my grandma wanted to make sure we had clean clothes (and appliances with warranties) so she bought us a new washer and dryer - but even those came from an outlet and were about half off!

Scarlett loves the new house, and has found all kinds of ways to be adventurous here.  Here newest game is to push the dining chairs up to the kitchen counters and climb up.  Luckily, the chairs make a terrible racket on the tile floor, so she is never very sneaky about it.  She is already making friends with neighbors as she walks laps around the block in her walker; she even made it most of the way around the lake across the street - it's about a mile around, so we were pretty impressed!

She has a new trick this weekend, too - she can now stand up from the floor with no support and take several steps.  Tonight, we counted 16 steps from daddy to momma!  We're going through the typical walking milestones at a snail's pace, but she's doing it!  Despite all the specialty gear, therapy and fancy shoes we have tried, I have decided that she is going to just have to learn the way other kids do - falling, practicing, and taking her own little risks - in her own time. She has a big job as flower girl in August, and I am getting more optimistic that she may just walk for it!

Her signing is blowing up, too - she's added signs for momma, daddy, water, home, Cosmo (our dog), socks, shoes and pear.  She has an approximated word for most signs, too.  The more we understand her, the less she has tantrums, so it is good for us all.

The first steps of her institutional deeming Medi-Cal (full-coverage insurance for certain special needs) set in, so she can finally get her new ankle braces and hearing aids, which have been withheld while we awaited the last several months of bureaucracy.  Now we are hoping the coverage is in full-swing before her MRI in early March.

Finally, yet another of our brain tumor friends is losing their battle.  Nicky suddenly began hospice this week after the return of his tumor.  He went through much of the same treatment as Scarlett as an infant, plus additional radiation and hyperbaric oxygen treatments for the resulting damage.  He has deteriorated very fast, and his family is now left to make him comfortable as the tumors take over.  I hate it, and it seems to be happening over and over and over lately.  We've lost so many kids in the last few months; something has to be done.