Saturday, July 20, 2013

33 Months

Miss Scarlett is 33 months old, closing in on the big 3!
Digging in the sand at Santa Cruz

She loves to play with cars, trucks and trains - anything with wheels.  She pushes them all over the house.  She wants to move - swing, ride, walk, crawl, anything to not be still.  She has become quite a daredevil, climbing on to chairs and tables, even dragging her toys around to use as step stools.  When she is on the move, she has no fear, which causes her knees and arms to be very bruised, toes blistered and gave her a lovely skinned nose last week.  She is also learning to give hugs and be very cuddly, which we all love!
Tolerating swimming lessons with Mommy
She is hovering at right about 25 pounds - we're hoping to make some progress on growth again once she finishes chemo.  She is about 32 inches tall.  She teeters between 18 and 24 month clothes - 18 month are usually a little short, but her waist is too skinny for most 24 months.  Her feet are still an itsy bitsy size 5!
Snuggling with Uncle Danny
Her language skills are blowing up!  She can independently sign many things: mom, dad, want, more, eat, cookie, cracker, all done, bath, swing, please, shoe, cheerio.  She is getting better at signing along with us too - if we model it, she tries it pretty quickly (especially if it might get her a bite of something yummy or a toy she wants!)  She has even begun putting signs together to make sentences - WANT SWING PLEASE, MORE CHEERIO PLEASE (we're pushing PLEASE lately).  She is fascinated with being able to tell us what she wants - it is a very empowering skill for her right now.  She is showing herself to be a listener and a signer - she hears us say something, and then signs her response.  She rarely responds to our signs, and doesn't speak much (though she makes herself heard!).  She is remembering more of what she experiences, like yesterday, when she saw the carousel at the beach, it was clear she knew what it was from her ride a few weeks ago (immediately signing WANT WANT WANT MORE MORE WANT WANT!) She is such an interesting little creature to watch learn and adapt to how her brain and body are taking in everything around her!


Unfortunately, it also comes with a downside - the girl is INSISTENT.  If she wants it, she wants it NOW.  She has a breakdown nearly every day about wanting to go out to her swing.  And boy, can she throw a fit.  She has mastered the head-throwing, screaming, kicking and boneless spaghetti legs that toddlers are known for.  We thought we might escape the tantrum 2's, but just like everything else, she is making sure she gets her chance.

We've been working a lot in PT on walking.  She has her walker that she uses almost every day.  We have been trying to take her places where it is safe for her to walk around - a handicap-accessible playground, parks, anywhere where she can have some freedom to explore.  
She also got a new accessory this month - SMO (Supra-Malleolar Orthosis) braces for her ankles.  She wears them most days, and anytime she will be walking.  They help to stabilize her ankles from rolling inward, and help point her foot straight out.  There is a lot of debate about why her feet are doing this - delayed motor development, brain damage from surgery and stroke, months of hospitalization, and some specific chemo drugs can all have an impact on how her feet and muscles develop.  Luckily, she does not seem to mind them, lifting up her little foot every time she sees them.

We still struggle with eating.  It is a battle every day.  She likes to eat, likes to play with food, but she struggles to swallow and cannot ingest enough.  We have decided this is a battle we are not going to fight until after chemo, when hopefully her appetite and taste come back.  Her g-tube works great for getting in the nutrition she needs for now.  Until then, we are working on teacher her not throwing the requested cheerios on the floor, and swallowing anything we can get her to take, even if it is only ice cream, whipped cream or pudding.

We are nearing the end of her current treatment.  By mid-August, the plan is to finish chemo and be back on the road to remission.  She has an MRI at the end of the month, which will hopefully show nothing new.  There are follow up appointments with her surgeon, where we are quite sure we will be discussing  her next phases of reconstructive surgery - her skull has yet to heal from the original surgeries more than two years ago. She will be seeing the ophthalmologist and GI doctors soon too, in a effort to continue investigating her vision and swallowing struggles.


Today we are headed to our local Relay For Life, where Scarlett can show everyone a thing or two about what it means to survive cancer!

5 comments:

MC said...

I've said it and I'll say it again: She is so CUTE!!! Love, love, love her! I hope that this stage of chemo ends soon and no more of this EVER for Scarlett! Wish you all the best! Thanks for sharing her videos. Makes my day.

child of God said...

Scarlett is sooooooo adorable!!! I love watching her sign and dance. :) Thank you for sharing these videos of your precious daughter.

Praying and praying the cancer is GONE and these present obstacles will be overcome soon.

<><

Mishu said...

Don't worry about the food. My girl was the same! I'd get excited if she ate ice cream lol.... Some people judged but who cares. I'm happy to report, once she started pre school, she started eating better!

Jeanne Charles said...

I haven't checked out this blog in a while. Not only is Scarlett an amazing young lady, you are amazing parents. God is using all of you to bless each other's lives. Thank you for sharing so much of yourselves with us!

R. Schreiber-Reis said...

I haven't stopped by in a while and I'm so excited to read that Scarlett is doing so well. (My son is 5 days younger; I'm from the BBC birth board back in the day.) I wanted to suggest, in case you haven't tried them- pants from Children's Place! Or really any adjustable waist. My son is a few pounds heavier and a few inches taller, but has the same problem- too tall for the right weight size, and anything long enough falls right off his waist. So I only buy adjustable-waist pants now. Maybe that can help? I always get them at Once Upon a Child b/c they are pricey when brand-new. Anyway, glad little miss is reaching the end of her chemo, that is such awesome news!