Sunday, June 28, 2015

Lil bits of what Cicily has been doing...

 Utah for Spring break.  Barfing and diarrhea didn't stop Cicily from having a good time!  A fave for Cis was playing in the snow.  She always laughs biggest just playing with her family!!!
 Cicily was spinning and swinging on this swing at the park for literally an hour!  Anyone know how we can get one for home use?!?!
 Nothing better than a lap full of chicks and ducklings for this girl!
 Cicily's new friend, Nurse Joy!
 Sophie and Mom got to go on the 2nd grade field trip with Cicily to Butterfly Wonderland.
 2nd grade end of year performance.  
 Lots of museums for this family.
 Favorite pastime of late - holding Mom's phone and listening to music!
 Playing arcade games with Grandma and Grandpa at a HopeKids event!!
Cicily always wants to push the cart when we're out.  So I've been taking her by myself lately when we only need a few things.  We make an awkward, silly train!  If we've made your shopping trip inconvenient, sorry we're too busy enjoying life to care.  :)  

The long path

When we received Cicily's degenerative/terminal diagnosis 4 years ago, we had a 45 minute talk with her neurologist (yes she was amazing and we are heartbroken she died before Cicily).  Dr. Sweetnam described that Cicily's life would either go one of two ways: she'd get too sick to recover and die; or she would continue on a path of degeneration where her body lost function and she'd slowly die.
Chris and I discussed this at length and both felt that clearly her body would take the shorter path for many reasons.  She'd always been so sick as a baby and young girl.  We know her love for life and being able to live it up as much as she can.  It sounded easier than the alternative.
The alternative, as I wrote in January 2011, "Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase.   I can't imagine her living too long without being able to smile, laugh and enjoy life with us. "
She's been so healthy over the past year compared to early on in her life, that we're starting to realize we're on the longer path.  
So rather than expecting every severe pneumonia to be her last, we're looking at long road implications.  And at the top of that list is, how do we continue to help Cicily be as happy as she can and get every bit of joy out of her life.  


I last did a detailed update of Cicily 2 years ago.
So it's probably time to do another.

Cognitively: Cicily completed 2nd grade this year and is now (thanks to her brilliant school nurse) multiplying, doing fractions, reading grade appropriate texts, answering grade appropriate comprehension questions.  Pretty much right on track for her age.  It's just taking more patience to figure out all the amazing things she knows and can figure out.

Fine motor (hand control):  Cicily cannot manipulate toys at all anymore.  Her hands stay very tight in fisted balls most of the time.  She likes to put toys in and out of containers because it's something she can actually still do with her hands.

Gross motor (sitting, rolling, etc):  Cis can't sit up anymore at all.  She can roll over but it takes a great deal of effort.  She can't bear her own weight - her feet are always moving up and down if were were to attempt to hold her up and assist her in stepping.

Respiratory: Best winter yet!  So odd.  She probably only needed her mega antibiotic 2-3 times this year instead of 8-10.  We think she's just older and not as susceptible to common little kid illnesses.  Just like most 8 year olds!

Communication: Cicily signs about 5 signs consistently, but prefers not to go to the hard work of signing unless necessary.  Her most important things: family members and books.   She still says, "yeah", though it's less exuberant usually.  She still makes a fantastic no face and a beautiful smile for yes.  But the wait time it takes for you to ask her a question and then for her to respond appropriately is getting MUCH longer.  It takes 10 or more seconds to get a good response.

Digestion:  She's been vomiting randomly for many months and we're not sure why.  I suspect it's just her soft muscles growing weaker.

Overall:  Cicily has been taking medication (Artane) for over a year now to help with her rigid movements.  It's very helpful in allowing her body to bend at the waist.  She still moves constantly and always has bruises on her arms and legs because although she can't move accurately, it doesn't stop her from trying and experiencing life.

Emotional:  Chris and I have noticed Cicily is not as happy as she used to be.  If you've read above you can appreciate why that may be.  But she manages to smile far more than cry.  Yes, she's amazing.