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! 

Tuesday, July 29, 2014

Chromosome Mico Array #2 results

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

Monday, June 30, 2014

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!

Thursday, May 29, 2014

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.