Saturday, April 22, 2017

Thursday, Friday, Saturday

Thursday Cicily went to school for her typical (as of the last month) 3 hours.  This schedule has been working very well for her.  She'll wake up a little late and lay in bed listening to music for a while.  Then get ready for the day and have some Mom and Cis time reading or something.  Then go enjoy her afternoon at school.  
In the evening on Thursday Cis started feeling pretty blah.  We snuggled for a bit in the green chair then she went to bed.  She woke up and had meds once in the night.  

Friday morning she wasn't feeling great still.  She had some poop with a little blood in it, which is somewhat to be expected with her bowel issues.  So, to cheer Cicily up, we gave Lucy a bath before school.  As you can see, Cis LOVES this because her job is drying off a wet, funny looking puppy.  Lucy doesn't love it so much, but Cicily gives her tons of dog treats after, so she puts up with it.  

Cicily wasn't feeling great at school, but had plenty of distractions from friends and her loving nurse to keep her happy.  She had a BM 5 times in the past 24 hours, so we were hoping that would make her feel better.  But when she got home, we just ended up having a snuggle for the rest of the day.  Thankfully Grandma was hanging out with us so she could get anything we needed/clean the house while Cicily and I snuggled.  Sorry Grandma, I definitely got the better end of that deal.  When Cicily really isn't feeling well only Mom snuggles or morphine can really make a difference.
Grandma helped realize that Cicily's stomach was full.  So thankfully she has a g-tube and we can just pop it open and use a tube to get whatever is in there out.  We drained 8 oz of fluid.  Hospice said this was likely to happen.  Towards the end your body can't use whatever food you're giving it (even when it's the most basic it can be and fed through your veins) and your body ends up storing it in other organs like the stomach and lungs.  So not a good sign, but I'm grateful we can at least use the g-tube and drain her stomach.

Even with the new issues and obvious pain, Cicily still managed to smile and laugh on Saturday while she helped clean her room, have a visit from some special members of our church,  and attend a family party and a friend party.  At night we did another draining and got about 6 ounces. Surprisingly, her respiratory infection seems to be improving.  Who knew it could do that without antibiotics?!  

Thursday, April 20, 2017


Tuesday this dude was at home to greet Cicily off the bus from school.  Jordan and Cicily share a diagnosis (even if it is just one of Cicily's "diagnoses" that drs have given her to get stuff approved).  It was awesome of Jordan to travel to spend the afternoon with Cis.  Books are always the way to her heart!

Cicily continues to get a little more distant.  She has more frequent staring spell seizures.  Her respiratory symptoms are staying fairly steady.  We're feeling more of the marathon here rather than a sprint to the finish.  And as long as that face keeps smiling, a happy marathon is awesome.

Wednesday, April 19, 2017


 We played for a couple hours outside after school today.  Maya read, Cicily and I snuggled and watched Sophie learn how to ride a bike.  Sophie just decided it was time to learn to ride on two wheels so she pulled out the bike and taught herself.  20 minutes later she's going up and down curbs, turning, and standing up off the seat.  Everything comes easily for that girl!  You'd think Cis might get a little jealous or even a tiny bit sad that she's not able to do these typical kid things that her sisters can do.  But she's only ever looked at Sophie with pride when she accomplishes something new.  She's a good big sister.
Cis sometimes has a hard time holding up her head.  Mom's shoulder makes a good pillow.


 We had a lovely dinner and Easter egg hunt with family.  Cicily usually scores big time with the money eggs.  But this year she only got a buck.  She was ok with it.
Later that night the girls' big sisters Shayla and Allison came to visit!  They're not really their big sisters (obviously) but we've adopted them in our hearts and we all love when they come spend time with us.  There were way too many "family only" stories told this night and tons of laughing!

Monday, April 17, 2017

Family Pictures

 My friend Cherri finished putting her expert touches on our family photo shoot today.  Here they are!  They are the perfect last family photos.  How big should a family picture be on a wall when it's the grand finale of us all together?  

 If you are interested in seeing more of Cherri's work, or to schedule your own session, check out her website:  

 These photos would already mean the world to me, but they are even more full of love and happiness because friends cared enough to make them happen.  Love you Cherri and Shanell


Saturday night we had a family Easter party.  There were lots of cousins, eggs, and swimming. 

 And baby holding for Cicily!!  Sorry if you're tired of seeing these adorable faces together (yeah right!)  Thank you Aunt Whitney for allowing Cicily these moments to love her little Rosette.  She won't ever get to snuggle her own little babies in this life, so it means a lot for her to be able to snuggle her cousin.
 Cicily and Sophie found a decent stash of eggs.  Maya was huddling, exchanging candy with a friend and cousins.
Soph pulled up Cicily's armrest for a headrest on the way home.  Cicily was loving it.  Live it up Sophie.

Sunday, April 16, 2017

Good Friday

Today was a good Friday indeed!

 No school today so Cicily got to stay home and play with Kristy and Magnolia ALL day.  There was a lot of great reading.  Cicily introduced Kristy to one of her faves, the Pigeon books.
 I missed getting a pic of it, but Cicily and Magnolia even had floor playtime together on a blanket.
 Cicily introduced Magnolia to the greatest indoor swing/hammock around, her hoyer lift (actual use for transferring Cicily).  We really loved our relaxed, quality time with these two.  Grateful for your visit.

 In the evening there was an epic lightsaber fight.  Cicily and Sophie made these lightsabers for their souvenirs on our last Disneyland trip.  Cis really loves hers!  Especially when she's using it to fight her sisters.
 One of Cicily's very fave nurses Joy came for a visit.  Cis couldn't be happier to see her old good buddy Joy!  There was even some silly face morphing and big Cicily laughs happening.
The girls wanted to show Joy and Kristy this cool trick.  Super spins on Cicily's eye gaze stand.  We tie our dog leash to it and put Cicily's big girl bumbo on top and get crazy with spinning!  Maya and Sophie and even Mom get a turn on the super spinner.
(If you're a medical supplier please forget you saw this post.  We do also actually use these medical devices as prescribed, but there have to be some big perks of a house full of medical supplies.)

So many thanks to all of Cicily's visitors.  She is absolutely loving this time and seeing you all.  Thank you for making her a priority.  I hope you don't all cry too hard driving home, as I'm sure I certainly would.  And come again, whenever you like!