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! 

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.