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

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!  

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.  

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! 

Chromosome Mico Array #2 results

Normal
All DNA appear to be normal as far as current standard DNA technology can detect.

New medical news

EEG

 Cicily was not a fan of having all the leads pasted onto her head.  Sister Sophie to the rescue!  Sophie and Maya can always make Cicily smile.  The test only lasted 30 minutes and then she was free.

In April Cicily had an EEG to test for seizure activity.  The test results showed: (drum roll please) nothing of course!  Just like every other medical diagnostic test we've done.  This girl is supposedly so perfectly normal!  She had one of her absence seizures just as the lady was putting on her leads, and then didn't have any during the test.


In May Cicily and I went to talk to a group of doctors (2 neurologists, 1 neurosurgeon) and physical therapists to discuss if a procedure called Deep Brain Stimulation (DBS) would be appropriate and potentially helpful for Cicily's dystonic movements.  We met for 4 hours and we even got to meet a girl who had the procedure and her family.  After the appointment the doctors and therapists met and discussed if this could help Cicily.  A week later we got a call saying they would like to do the procedure on Cicily.  Now it's up to Me, Chris and Cicily to decide if it's worth the potential gain.
For a DBS procedure the neurosurgeon places electrodes in the brain and then connects them to a transmitter placed in the abdomen.  Then 2 weeks later the neurologist turns on the electrodes and fine tunes them with the transmitter (all remotely).  It's supposed to help the brain send signals better and helps people control their movements better.  There is a 20-30% risk of infection with the surgery.  Knowing Cicily and infections, if there's that good a chance, then it's likely she'd get it!  Decisions, decisions
Here's more info on DBS if you're interested: http://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/basics/definition/prc-20019122


Last week Cicily went to the geneticist.  She thought it would be a good idea to do another chromosome micro array because the technology has improved since Cicily had the test 5 years ago that showed normal chromosomes.  The great part for Cicily was they could now swab her cheeks instead of drawing blood. Cicily was quite happy about her cheek swab and kept signing to tell Dad and Grandma about it.  Results for the CMA come back in 2-3 weeks.  Probably will be normal, but if it's not you'll find out here first!

Sophie's conversation with a stranger

The girls and I went to the library today.  As usual Sophie made fast friends with a few kids there.  One of the girls was standing at a table with Sophie playing with toys and I overheard their conversation, which I transcribed in a text to Chris. 

Girl: "What happened to your sister?"

Sophie: "Nothing they're right there behind us."

 (Soph didn't get what the girl was referring to.)

Girl: "What happened to your sister?

Sophie: "Nothing."

Girl: "What happened to your sister, the one that's in the wheelchair?"

Sophie: "That's just the way she was born."

G:  "Why does she make funny faces?"

S:  "She doesn't that's just the way Jesus made her."

G: "Why does Jesus want people to be hurt? 

S: "He doesn't want people to be hurt he wants them to be happy."

G: "Why does she have that thing on her neck that looks like a dog collar?"

S: "That's her trach. She has that because she has a hole in her neck. It helps her not get sand in her mouth."

  (Not sure about that one.  I guess she can't get them all right, she is only 3.) 

G: "Does she walk?"

S: "No."

G: "Does she eat?"

S: "No she eats with a thing called a food pump."

G: "What's a food pump?"

S:  "It's something people who don't walk or talk use to eat."

Sophie was very matter of fact and nice about it all.  Then the girl's curiosity was satisfied and they continued playing.  

Sad to say bye to friends

Cicily's last day of first grade was last week.  1/2 of her friends in her class are going to other schools next year.  When I found out about this, I was very sad.  Cicily doesn't really have friends her age outside of her school class.  These 8 kids are amazing!  I've been blessed to see them interact with each other for the past 2 years.  They communicate mostly nonverbally - through touch, smile, and gesture.  Mostly they seem to communicate spirit to spirit.  It's pretty remarkable to witness.  So I asked Cicily if she wanted to make a special present for all of her friends and the women that take amazing care of them in class.  She was totally excited about the idea.  So we got a picture from the day Daddy taught her class about archaeology and one of Cicily's favorite scriptures that describes every child in her class.  Then Cicily had fun choosing a color for each person and painting their wooden blocks.

On the last day of school Sophie and I took all the blocks to Cicily's class and she got to hand them out.  She absolutely loved it!  I got to say goodbye to all her friends and give them each a hug.  I didn't even cry too much.  I hope they all end up in good schools that will give them the care and opportunities they deserve. 

"Jesus answered, neither hath this man sinned nor his parents but that the 

works of God should be made manifest in him."  John 9:3

2013-14 School Fieldtrips

Cicily's class went on some good fieldtrips this year!  And lucky me and Sophie got to go with them!!  Cicily's teacher invites us to go on each one. 

Cicily and Sophie fishing in our local park lake.  AZ game and fish stocked the lake and then invited some of the special education classes to come and fish.  We didn't catch anything, but Cicily did get to bring home her own fishing pole!

Since this fieldtrip was all outside at a park, we decided to take Lucy.  Cis was very happy to share her Lucy with her friends!!  And most of her friends thought Lucy was pretty cool.  

That is a butterfly on Cicily's head!  We went to Butterfly Wonderland where they have an atrium full of exotic butterflies.  It was pretty amazing!  

Sophie marveling at this beauty.  She just sat there admiring it for a long time!

Cicily's teacher invited Dad to meet the class at a park to teach them about archaeology.  He buried some pottery sherds in the sand and the kids got to dig for them.  A dream come true for Dad to teach his daughters' classes about archaeology (he was a guest speaker in Maya's class this year too).  I love this picture of the kids out of their chairs, enjoying the sand.  These women (teacher, Cicily's nurse, and aides) are truly amazing at taking care of and giving love to these kids.  

State Fair!  This fieldtrip was on Mom's birthday so we let Maya come along too.  What an awesome way to spend my birthday afternoon!  All the kids, especially Cicily, really like seeing all the animals on display.  I love how some of the boys are being goofy in this picture.  These kids are ALWAYS cracking each other up!!

Going to these fieldtrips I got to witness some very cool interactions between Cicily and her friends at school.  One of the boys loves to give hugs!  He likes to have Cicily's chair close to his so they can hug.  At lunch one day Cicily was grabbing onto her friends chair and tipping her back.  Her and her friend were both laughing hysterically.  Another day Cicily put her hand on her friend's knee.  I rarely see this boy smile, but as soon as Cis put her hand on his knee, he had a big grin.  They just communicate in a different way than us.  I love that they understand each other.  They're like a special little family.  Cicily loves it!!!  And so do I.

How much work is Cicily?

I have a friend who has a son who has some disabilities.  She told me a few years ago that she feels like her son is equal to two kids in how much work it takes to care for him.  She said she figures the amount of care Cicily requires is probably equal to having 3 or 4 kids.
Since this conversation I've thought a lot about how much work we really put in to caring for Cicily.  Some people have asked about how it really is.
I've given it some honest consideration and decided that right now taking care of Cicily is pretty equivalent to: having a 7 year old, a 5 month old baby, and a small part time job.

A 7 year old because she's 7 and does a lot of things a 7 year old girl does.  She wants to play on her iPad, play with toys, loves to read, and loves to joke around.  We spend about as much time doing these things with her as we did with Maya when she was 7.

A 5 month old baby because the day to day care she requires is like a 5 month old baby.  I remember the specific day when Sophie was 6 months old and I realized, man she is actually less work than Cicily now.  Cicily needs her clothes changed, her diaper changed, to be moved from one place to another, to be strapped into a carseat, to be entertained, etc.  But all these things are more difficult to do with a 7 year old body!  Let me tell you, a 7 year old blow out is horrendous.  I've been collecting pictures for a possible future post, but haven't decided if anyone in the world wants to be exposed to the horror.

A part time job for all the other care and "office" work.  Probably a part time job in nursing, and medical office manager.  For nursing there's suctioning, tube feedings, trach changing, breathing treatments, various daily medicines, bathing, and diaper blow outs (trust me, they're worth putting in 2 categories).  For medical office manager there's ordering 5+ boxes of medical supplies each month, fixing medical supply orders each month, making doctor appointments, getting appointments approved, getting insurance mistakes corrected, etc.

There you have it.  I don't share this in any way to complain or so anyone will feel compelled to give compliments.  I've just been asked, and I thought it would be interesting for people outside of our house to get a glimpse into the daily grind.  How much time and effort a child like Cicily actually takes to care for.  So is it worth it?

The kind of pretending Cicily's life inspires - Sophie edition

I was thinking of posting about something I heard while Sophie was playing the other day.  And then I remembered this post about Maya playing: The kind of pretending Cicily's life inspires.  Maya was about 4 years old and Sophie is 3.  Both play scenarios really mirror our lives at the time.  When Maya was 4 we were all about therapists and medical procedures.  Now when Sophie's 3 we're all about wheelchairs and having hope in a future day when Cicily has a perfect body.
So Sophie was playing the other day (she likes to pretend on her own) and I overheard her saying, "It's ok, when you're resurrected you'll be able to walk and do all that stuff."
I'm happy Sophie has perfect 3 year old faith that because of Jesus, Cicily will be resurrected and be able to walk someday.

(No photo accompanying this post as Sophie likes to spend her days as a "nudie" whenever possible.) :)

Cissie Selfies

A couple months ago Cicily figured out how to take pictures on her iPad (communication device).  So now whenever she wants a break from school work, she entertains herself and her nurse by taking selfies!

Staring - after 7 years I finally discovered something nice to say that works!

"Do you want to say hi?"  It's simple, it's nice, it makes Cicily relatable.

For the past 7 years I've tried out many tricks to get people to move on when they're staring at Cicily.  I've smiled back, ignored, made silly faces, given evil looks, etc.  Sadly I used to find evil looks to be the most effective!  ;{   Until a couple months ago, I asked a small kid who couldn't keep her eyes off of Cicily if she wanted to say hi to her.  At first she was startled that she'd been caught and that I'd talked to her, but then she smiled and said hi to Cicily and then walked away.  Since then I've tried it numerous times and it works!  Most kids will say hi and walk away, some look embarrassed, and some say hi and then ask their questions that we're happy to answer.  Cicily likes it because she loves to interact with people!!  Most of the time this seems to help the child realize that Cicily is just a kid too.  Once we've started a conversation with someone, I always like asking them what their favorite color is or how old they are or what they like to play and then telling them about Cicily's favorite color, age or activity.

Phew, 7 years in the making and I figured it out!  Now if I can just find something that works on those pesky adults....