Tuesday, July 29, 2014

Chromosome Mico Array #2 results

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

Monday, June 30, 2014

New medical news

 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.

Wednesday, May 28, 2014

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?

Thursday, April 24, 2014

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.) :)