Wednesday, December 3, 2014

One of a kind

We're at the wheelchair place getting adjustments made to Cicily's chair. The man who manages adjustments shakes his head in disbelief and says I have never has this problem with any other kid who comes in here!  I told him we get that same sentiment from doctors all the time.
For better and worse she's just one of a kind.

Wednesday, November 12, 2014

The incredible shrinking brain

I know the post title is weird, but laughing is better than crying.  Went to Cicily's neurologist today to discuss her latest MRI (as well as meds, etc.).  Cicily has had 4 MRIs done of her brain. Comparing the first at age 1 1/2 and the most recent at almost age 8 was very enlightening.  Basically, Cicily's brain is shrinking.  She is losing white matter (leukodystrohpy) which we knew and she is also losing gray matter (poliodystrophy) which we thought may happen but not to this extent.  Does it really change Cicily's prognosis - no.  We knew her brain was losing tissue (where does it go?  I'd like to find it and put it back where it belongs.) and that it would lead to her losing function of her body until it can't function at all.  Now we just know she's losing white and gray matter.  It doesn't mean she'll lose function any faster, just gives us more pieces on the Cicily medical puzzle.  

For the interested readers, here are Cicily's images.  I find them fascinating.  
(White areas = fluid, light gray areas = white matter, dark gray areas = gray matter) I think

Cicily's brain MRI taken on 4/2008 (1 1/2 years old) 
Around this age Cicily could crawl; cruise furniture; identify animals, colors and shapes; and sign about 50 signs. 

Cicily's brain MRI taken on 7/2014 (7 1/2 years old) 
Around this age Cicily cannot crawl, or cruise, and can only sign 10 signs.  She can read sentences, has all previous knowledge and is still learning more. (How does she do it???  Nobody gets it, but she LOVES it, so I'm happy.)

Here are some MRI brain scans I found of children with typical development. (These images are T1 and the above of Cicily are T2, so the blacks and whites are sorta swapped.)

I realize not everyone looking at these images has the extensive 5 minute training I receive when I talk to Cicily's neurologists about her MRIs, but you can still look and appreciate the changes!

A few things to notice:

The big blob in the very center is fluid (as I understand).  There is so much more fluid in Cicily's 7 year old scan because something has to fill up the space left by her disappearing brain matter.

Underneath the "legs" of the white "blob" notice the light gray areas.  These are white matter.  You can appreciate how much smaller those areas are now than when she was 1 1/2.

If you look at the brain overall you can notice more "canyon" areas (bright white areas that look more or less like grand canyons in between large mesas).  Those canyons are where gray matter has disappeared and fluid has filled in the space (again, as I understand, anyway).  There are larger canyons and smaller mesas.  That's not what you want in a brain!


After the appointment I was asking Cicily if she thought looking at her brain was cool.  She was unimpressed and annoyed.  But later when I told her she should take her pictures of her brain to school if her 2nd grade class talks about brains in science she was all over it!! Then I joked with her about her incredible shrinking brain and how it reminds me of the shrunken heads on the Jungle Cruise ride at Disneyland and she thought that was amusing.  

How does a person learn to read without talking???

How does a person learn to read without talking???  Be honest, when you heard Cicily could read, you asked yourself this question, but were too afraid to ask.  (By the way, you can always ask, I much prefer it.)  This is definitely what I wondered when Cicily was mastering her preschool letters and looking forward to the next step of reading.  So I thought I would explain some of the techniques Cicily's teachers use to know what she's reading and help her learn more.  

 These pictures are of Cicily reading in Speech Therapy.  Cicily's therapist read a story with her and then wrote out two questions for her to answer.  Her therapist just held up the answers without reading them and Cicily pointed to the correct answer without fail.



Her SpEd teacher has cards and a toy duck.  The cards say things like, "put the duck on top of the cup."  Cicily reads the card on her own and then demonstrates that she read the card by putting the duck on the cup.


Cicily's K-1st grade SpEd teacher now teaches reading resource in her school.  So, Cicily gets to go to resource with her and her 4th grade reading group.  They've recently been focussing on prefixes and suffixes.  Cicily's nurse says Cicily can determine if a word has a prefix or suffix with complete accuracy.  Cicily also gets to bring home books from this group that focus on different letter blends. She loves reading them with me and Sophie!  And, she brings home words on flashcards.  We hold up two words such as "about" and "around" and ask Cicily, "which word is about".  She'll point to "about" without fail, unless she's in a silly mood, then she'll point to all the wrong words in a row!  To combat the silly moods, we've had her "teaching" Sophie the words.  Cicily has to point to the right words so she can teach them to Sophie.  Now we get pretty much 100% accuracy from Cicily and learning for Sophie.  :)


Cicily also continues to make sentences from word cards that she reads and organizes into sentences and make sentences on her iPad from words she reads.


I continue to be amazed at how dedicated her teachers and nurse are at helping Cicily learn new things.  Cicily LOVES learning.  It's something she can do and do very well.  And I love that she has amazing people who make it possible.

Friday, October 10, 2014

More lessons from being Cicily's Mom

Dear Mom and Dad, thank you for raising me in a family devoid of prejudice and so full of love for my fellow man that when I was judged and found wanting solely based on my religion it was incomprehensible to me. (Though I could have used more lessons in humility :) )


Back story: We're interviewing for a new nurse for Cicily. A lovely woman came to our home to meet us. She's here from Georgia going to Bible school. She seemed to be a very capable nurse that loved the Bible and took to Cicily. Hey we have a lot in common I thought! I called the agency to tell them we'd like to entrust her with the care of our daughter. The agency's response surprised me, she may not be comfortable going to your church. Ok we thought, she can just work with Cicily on the other days and we'll work something else out for Cicily at church. Then we got word today that she doesn't want to work with us at all.



Dear lovely nurse,

My heart is sad for you.  You declined to work with an amazing daughter of God. Cicily is filled with Christlike love that she would have gladly shared with you.  If you are looking to know Jesus your Savior better you could have had no better teacher. For Cicily teaches me about patience, unconditional love, charity, and faith every day if I open my heart and allow her.  Our family wishes you all the best.
Janalyn

Saturday, September 13, 2014

Cicily is getting baptized!


We belong to the Church of Jesus Christ of Latter-day Saints (Mormons).  In our church children are baptized when they turn 8.  At the age of 8 we feel kids are mature enough to know the difference between basic good and bad choices and decide for themselves if they want to follow Jesus and make promises with God.  Cicily is very excited to be baptized just like Jesus was and to make her own promises with God.  Though the promises will be nothing new for Cicily as she's already very good at remembering Jesus and trying to be like Him!  


In anticipation of her baptism, this morning Grandma, me and Cicily went to the temple to take pictures in Cicily's baptism dress.  


 Since Cicily understands and thinks just as any other almost 8 year old, we feel she is capable of making this choice to be baptized.  And we're happy she is choosing to do it! 

 (Had to get a shot with the rock art for Daddy.)


Cicily seems to know Jesus and understand spiritual things very naturally. We're happy she will get to share this special day in her life with people she loves! 


Excited, happy Cis!  

Wednesday, August 6, 2014

Newport Beach and Disneyland

In June we traveled over to California to stay with the 
Watkins fam for our biannual Newport trip.  

 A little walk down to Crystal Cove and a silly picture.

 Newport Beach (and a lot of CA beaches) have these totally awesome beach wheelchairs to borrow.  The wheels were full of air so the chair glides along the sand.  And it sorta floats in the water so Cis could catch waves.  It was awesome!  Totally made our dreaded beach day actually enjoyable.  Cicily really loved getting in the water and floating on the waves.  She even got to eat some sand and ocean water! 




Cicily and I went on a few errands and wandered into the Newport LDS Temple.  Cool surprise!
We spent a few days at Disneyland!  Cicily got to ride the Teacups with Grandma Sue.  Now when she watches her teacup video on her YouTube channel she signs Grandma!  



Mom and Cicily Disneyland Day!!!
I have to say this was one of my favorite days of the whole vacation.  Maya and Sophie wanted to hit the beach again with their cousins, and since Chris and I are only up for one beach day with Cicily, we split up. Dad took Maya and Sophie to the beach and Cicily and I had a solo day at Disneyland.   
 Cicily decided she wanted to be brave and give Splash Mountain another chance.  She liked it this time, but only wanted to do it once that day.  We figure if her brain wasn't getting in the way, she'd really enjoy roller coasters.  She just can't handle the jerking movements very well in her body.  Will there be roller coasters after this life??  I hope so!
 Carousel.  Rode at least 2 times.  Loves the horses!
 Small World of course!!!
 Apparently you need some foot covering even in the Happiest Place on Earth and even if your feet never touch the ground.  Cicily never wears shoes (lucky girl!!).  And since it was a hot summer day she hates to wear socks so I didn't put any on her.  Some of the Disney cast members didn't want to let it slide so we had to break down and buy some Minnie Mouse socks.  We'll forgive Disney for their silly foot rule since they're extremely accomodating and inclusive for kids with disabilities.  

Riding Big Thunder Mountain for the 4th time!  Disneyland rebuilt Thunder Mtn. and it's so very smooth now.  Cicily tried it out with Chris and I earlier in the week and really liked it!  So we went on it over and over and over and over again and LOVED it on our day together.  I so enjoyed my day with my adventurous Cicily.  

Tuesday, August 5, 2014

Camp Fiesta!

This summer Cicily got to got to Camp Fiesta!  She REALLY loved it!!!  Her favorite part was making friends, both kids and adults, but they also had awesome activities each day.  

 There was a talent show on the last day of camp.  Cicily's group did a dance to Everything is Awesome.  It was a very unique and heartfelt show!
 Cicily made a lava lamp one day.  She liked the science class.
 Every Thursday was a special day.  This time was a carnival - complete with bounce house, games, prizes and treats.
 Cooking class - making American flag rice krispy treats.  Cicily was happy to give hers to her sisters when she got home.  

 Art class
 Bowling!
  
 Making a cloud out of Ivory soap.  We tried this at home later and it didn't work out so well.  
 Ball room - a very favorite of Cicily's. 

 Ball room
Another special Thursday brought some lizards and snakes.
Of course that was popular with Cis!

Camp Fiesta is done by the city parks and recreation department.  It runs M-Th for 4 hours for most of the summer.  It is all for kids with special needs and it is amazing!  I got to take Cicily on her first day.  Such a lovely program.  We're so glad she had 2 wonderful nurses to take her to camp each day.   She's already looking forward to camp next year!