Update

I last did a detailed update of Cicily 2 years ago.
http://cicilyspage.blogspot.com/2013/04/update-how-is-cicily-doing.html
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.

Baptism Day and Happy 8th Birthday Cicily

Cicily Anne Watkins was baptized a member of the Church of Jesus Christ of Latter-day Saints and given the gift of the Holy Ghost by her Dad on October 3, 2014.  Her Grandpas were official witnesses of her baptism and many of her family and best friends were also there to witness this special event in her life.  

When Cicily woke up the next day we were talking about her baptism and birthday party.  She said it was the best day of her life!  She was in heaven getting to spend time with all of her most favorite people in the world!  

Her favorite nurses/best friends were there!

 So many friends made lots of yummy treats for everyone to enjoy.  Thank you very much sweet friends.

Cicily's friend and bus-mate Caleb came to celebrate!

 Aunt Kristine and Clint and Landon joined us.

 Our besties the GGs.  Cicily loves these girls!  They always take time to say hello and talk to her.

 Aulton and his family came.  Cicily and Aulton have been special friends since Cis was born!  Aulton wanted to sit on her lap tonight.  

 In addition to treats, we also had balloons to keep all the little friends happy!

 Grandpa Courtney and Grandma DeEtte  

 Grandpa Norm and Grandma Sue

 A big hug from and for Sister Sparhawk!!  I'm sure there was a handshake before or after too.  

Cicily loves handshakes!

 Cousins!!  The Snell Family (Minus Uncle Heath and Cade who made plans before they knew about the big day.)  Cicily enjoys playing with all of these guys and talking about her outfits with them!  Cicily and Kobe even made up a great game - trach vent soccer!

 The Snell Family! Uncle Adam and Aunt Fabiane traveled from Las Vegas just for Cicily's baptism.  Aunt Fabi gave a beautiful talk about baptism just for Cicily.  I love that Cis is giving her a hug in this picture!

Ashby Family!  

Thanks to all of Cicily's family and friends who could make it to her baptism and birthday celebration.  She really enjoyed her night a lot, as you can see!

It was a perfectly beautiful night for me.  I had spent the previous 2 years thinking about and planning her funeral.  It was so lovely to plan a night all about Cicily that so many of her favorite people could come to and enjoy together.  It was much nicer to celebrate her life on a night when she could be there to participate!  I'm so happy for her that she could make covenants with her Heavenly Father and now have the Holy Spirit as her constant companion. 

diagnoses

Thought it would be entertaining to list Cicily's diagnoses.  I'm sure we're missing some.

treacher collins like syndrome
leukodystrophy
poliodystrophy
dystonia
deaf
visually impaired
cerebral palsy
epilepsy
terminal
microtia
micrognathia
dysphasia
non-ambulatory
non-verbal
incontinent
happy

Chris likes to think of it as if Jesus were asking today, 'are there any among you who are lame, blind, or deaf' we could check all boxes!

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 had 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.

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.

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