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.