Thursday, March 14, 2013

Go, Go, Go!

Round three of chemo has been relatively kind to Scarlett.  She has had a few bouts of nausea and has taken some extra naps, but on the whole is feeling pretty good.

Scarlett has made some great progress in the last few months.  Her doctor has been asking us t video her around the house so she can see what she is doing outside the hospital (since she is only seen during her chem infusions, her mobility is very limited when we are here.)  So, our phones have been trained on her, trying to catch her many tricks.  She is learning and changing all the time.  She is currently just over 25 pounds and gaining.  She is crawling, climbing and cruising everywhere.  She is most interested in her zebra scooter bike.  She can ride it for hours each day, and has learned to steer and control it despite its fixed wheels. She can even get it over cracks or the sliding door track, and gets mad when she can't go up steps (though she was also not pleased when she accidentally went down the step into the living room...) Since the weather has been warming up, she has been outside enjoying the sun.

She has gotten very adventurous.  So much so, that she is getting herself into trouble wherever she goes.  She has been falling, bumping and bruising on a regular basis.  It makes us nervous, but we have to let her learn to trust herself, and to explore on her own.  Normal kids get bumps and bruises, so we have to let her do that too...we just hope we don't upset her neurosurgeon, who has spent hours building the rounded head that she enjoys banging against her high chair!

She has also learned several new signs. She now regularly signs "more", "want" and "all done". She can imitate "mama", "diaper", "pacifier" and "happy" at appropriate times.  Her auditory receptive vocabulary (words she understands others saying) is exploding, especially for songs.  She knows the signs for several of the songs they sing at school, and shows understanding of words and phrases we use every day.  Her spoken vocabulary is still negligible, but she is babbling (as I type: wawawa ga ga babababa....)


Last week, we were excited when she scored at her age level for the very first time.  We are used to, and somewhat numbed to, her normal scoring of about a year behind her age. Her overall development is about on par with a 10-14 month old.  It has been this way since we first learned about her tumor and its effects.  It's hard to see her compared to other kids her age, but we know that progress is progress, no matter how it has to be labeled by standardized tests.  However, this time, they tested "self care skills" - essentially dressing herself - and she was at 2-2.5 years!  She can take off her shoes and socks (and in fact, never keeps them on); she lifts her feet for socks - one then the other; she can put her arms into and pull them out of long sleeves with minimal help; she can take short-sleeved shirts off on her own when she wants to; she pushes her feet into and pulls them out of pants, and can pull pants off her legs when laying down.  If I hold a jacket up to her, she puts her arm into the sleeve.  She brushes her hair (or at least puts the brush to her head and hits herself in head), and puts the toothbrush in her mouth (when she is feeling very agreeable).

The next round of testing is right around the corner.  We just scheduled the first of many meetings for her Individual Education Plan (IEP) with the school district.  It has the potential to be a very challenging transition, as the school district assumes the responsibility (and costs) of her education and speech services.  We have been preparing for it for a while already, and feel like we have a good handle on what will need to happen, but it is the next hurdle that we must cross for her.


April said...

She looks like she is doing great! I loved the video of her blowing kisses. What a sweetheart. You guys are doing an awesome job.

G said...

Absolutely amazing!! I have been following from the beginning. I have a son around a week younger than Scarlett and can say she rides the Zebra better than he. We bought his for his 1st bday and he only started sitting and scooting with his legs a few months ago...He prefers to push and run. But even when he is sitting Scarlett would have passed him in speed..he can't go very quickly. So there is another test she is with her age group and above my so called "normal" child. I love to see her progress and how much she is a fighter!

Andrea said...

Yeah for Scarlett!

debtfree4me said...

Those videos are so precious! Love the blowing kisses one! Go Scarlett!

child of God said...

Your daughter is adorable!! The Father has His hand on her, just look at her go. Thanks for sharing the videos of her, you must be so very proud of her.

Praying for you Scarlett. :)

Haley said...

My daughter is exactly one month older then Scarlett, and her and I loved watching the videos. Thanks for sharing!

Carrie said...

I am a preschool special ed itinerant teacher ( we call birth to 3 here early intervention and 3 to 5 preschool ed). If you need some help navigating the 3 to 5 range let me know! It is another state though! From what I experience it is a bit harder to get things at age 3, once you get to 4 1/2 it seems like they give you tons of services! I guess, the closer to kindergarten. In general though when parents press, it seems like the are willing to accomodate! I like this area so much better then school age!