Still hanging on

our girlie is still hanging on. She's had slowed labored breathing since last night.
She appreciated everyone who came by yesterday. And was mostly awake but too sleepy to smile.
This morning she let me know she's ready to go. A huge comfort to an aching mommy's heart.
She was awake all afternoon looking at family memory books with all of us. And doing lots of "smiling on the inside" as Maya calls it.
She signed the only sign I've seen from her in days. It was "Maya".

Visiting hours 2-4

We're thinking this may be our last day with our Cicily.  We know many people want to visit and we want everyone to be able to come who wants to.  Cicily would want to pass on her love to all who love her.  So we've decided to set up some visiting hours.  You are welcome to come to our home today between 2-4 for a quick visit.  We can't promise Cicily will be awake, but that's been a good time for her the past few days.  She had a peaceful night and is still sleeping.  We'd love to see whoever wants to come.  Call, text, email (janalyn at gmail) if you need an address.

Friday - We're down to days with our girl

This morning we had a home visit from the hospice team (dr, nurse, social worker, resident dr).  Home visits are awesome.  Hospice is awesome.  

The doctor confirmed what we had suspected.  Cicily's new symptoms are not just bad days they are end of days.  After examining Cicily and hearing our report of the past week, she gave us the news.  The food and water (TPN) Cicily has been getting through her IV is not being used by her body.  It's seeping out of her veins and into her stomach, lungs, abdomen, etc.  Essentially, continuing to feed her is doing more harm than good.  We could choose to continue her food or stop it, but the result would be the same.  Her body has been amazing.  Doing so well with its incredible limitations.  Her spirit is even more amazing.  But, her body is just done.  It can't function well enough to keep her spirit living in it much longer.  So, Chris and I made the awful and heartwrenching; but also simple and peaceful decision to disconnect Cicily's TPN this morning.  The dr said she could be with us for a few more hours, days or weeks.  Our best feeling is we have a day to three more with our girl. 

 So Daddy and Mom snuggled and cried and talked with Cis about what was going on.  We asked her if she was ok with stopping the TPN.  She couldn't bring herself to say yes or no.  That's ok.  Even the most wise 10 year olds need parents to make the tough choices.

 Then we brought Maya and Sophie (They had been playing Legos together in Maya's room.  I hope this nice togetherness will last after Cis goes.  They'll need each other.) in to tell them the news.  We had some lovely family time.  Crying, talking about how much we'll miss Cicily, hugging, talking about what Cicily will be doing in the spirit world, and making fart jokes.

 Then visitors came, and more visitors, and more and more.  Cicily LOVED it.  Except at the end she got exhausted and still loved everyone coming, but with less smiles.  This is Maya's bestie since they were 2 playing Maya's ukulele with Cis.

 And while cousins were here, a chicken got plopped on Cicily's lap by Sophie.  (I think she was shocked when I told her she could do it.)  

 Then we had a little more family time.  A spontaneous Small World dance and song was performed and enjoyed.  

And in the midst of it all, I learned how to give IV morphine.  Now Cicily's on a morphine drip, with doses of lorazepam (anti-anxiety, end of life med).  Hopefully she can be comfortable but still conscious enough to enjoy her last couple days on this earth.

Thursday

 Dying's not all fun and games, even for Cis.  Sometimes it hurts and is very sad. 

 Cicily's nurse Tamara came to visit today.  She brought Cis a gummy bear keychain.  Gummy bears are their class' "thing".  Her teacher came later with an armful of sweet cards from her friends in class.  They miss her smile.

 Cis was asking for her buddy Lucy a lot today.  Lucy was happy to oblige for some belly scratches.

 Grandma got a hug/headlock

 Maya got a big laugh dancing Lucy on Cis' belly.

Maya helped Cicily read her cards. Cis loved the cards and her Maya time.

For most of the morning Cicily was pretty upset.  She brightened up completely when her sisters came home.  We mostly all hung out on the bed this afternoon and played.

Wednesday

 Maya laid down on the bed by Cicily after she got home from school.  I'm glad I caught a picture of this sweet moment.  I often miss capturing Maya's sweet quiet moments with Cicily.

Cis was going sans- clothing again today so it was harder to take pictures.  Plus, she wasn't very happy so adorable smiley pictures would have been hard to come by.  Here's a sweet moment with her doggy Lucy though.  (I love the Sophie photo bomb.)  Lucy was the only thing she asked for today and it was the first smile I saw when I got Lucy up on the bed to give Cicily "kisses for Cisses".
Cicily woke up at 4 am needing meds.  She stayed awake sad and fitful until 6.  Then she feel asleep and slept peacefully until noon.  Then she woke up crying and I gave her more meds.  She stayed in bed for the rest of the afternoon.  Playing and reading with Mom, Lucy, Sophie and Maya.  She was fairly "out of it" for the most part today.  Dad and I took turns holding her in the green chair tonight and eating dinner.  Then she was ready for bed by 6 pm.  We're starting to think this is looking like a new normal instead of a string of bad days.  But the next few days will tell.

Tuesday

We had an appointment this morning so I got Cicily her sponge bath, dressed and in her chair ready to go.  She cried the whole time.  I felt awful.  It reinforced why hospice is so amazing in not making people go anywhere, they deliver meds, make house calls, etc.  I can't say enough good things about hospice so far.  Cicily was good once we got out in the car (though that may be due to me giving her morphine and lorazepam) and the appointment was quick.  When we got home she just wanted to lay in bed (and have her clothes off which she laughed about - hey whatever makes a dying girl comfortable I say).  We listened to music, and played swipe the ipod games.  She took a tiny nap.  She was legit happy laying in bed all day.  As we were playing and laughing, I said Cis what am I going to do without you.  She looked a bit concerned.  I just couldn't think of any positive follow up. I'm just going to miss her.  Like every single day for the rest of my life.   

In the afternoon Grandma came and brought a silly clown nose.  Cicily and Sophie enjoyed antics with that of course!  And there was nail painting.  It's Minnie Mouse nails today.

That's Sophie's cot in the background.  She and Cis share a bedroom.  Since Cicily's scary breathing night a few weeks ago, Cicily has been sleeping in Mom and Dad's bed and Soph sleeps at the foot of our bed in that cot.

Cicily continues to have fluid in her stomach.  Drained 2.5 ounces at lunch and another 6 at bedtime.  We're suctioning clear secretions all the time from her trach, which leads us to believe she also has the fluid in her lungs.  She's losing a bit of weight.  This all adds up to what the hospice nurse mentioned to us about bodies not being able to use TPN at a certain point so it gets stored elsewhere. The only question is, is this another few days of bad and then her body will work for a while or is this a new normal.

Sunday, Monday

 Sunday Cicily slept in until after 10 am.  Which was good because she was up crying in the night for an hour or so.  She got dressed for the day but never felt good.  She was clammy and sweaty and wanted her clothes off.  So she spent the day snuggling with Mom.  When she was in her wheelchair for lunch and dinner time, she was sad and crying.  But as you can see, if she was snuggling with Mom, she was just fine and playing jokes and laughing even.  It worked well for a nice restful Sunday.  Sophie decided she wanted to get into Harry Potter so we ended up watching 3 movies.  Can't complain about being able to make my girl happy.  But I hope she can be happy without snuggles some of the days this week.  I don't necessarily do well sitting in a chair all day, not being able to get anything done.

Monday morning.  Cis had a good night, slept through until 5:45 am when she woke up crying.  Tried to give her tylenol and then morphine and it didn't really help.  We got her in the bath as she had thrown up and we thought it might help her feel better.  She cried through the bath and getting dressed.  But laying back in bed snuggling with Daddy made it all good.  She even outlasted him before they both took a nap.

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?!  

Tuesday

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.

Monday

 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.

Easter

 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!

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: www.shuttersparkphotography.com  

 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

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.

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!

Thursday

This girl would have been so popular in the 80s!

So Wednesday was such a good day.  But Wednesday night Cicily woke up a couple times crying.  It was definitely a sad cry instead of a pain cry.  It broke my heart.  I think she was getting sad about what's coming.  I didn't really want to ask her today because she doesn't like talking about sad things.  So we gave her just lorazepam and she was able to go back to sleep.  Then she woke up again and gave it to her but she was still upset so we did morphine.  I'm told sometimes hospice patients feel like they have a hard time breathing so the combination of those two meds helps.  

Cicily didn't feel good enough to go to school today.  So she stayed home for another Mom and Cis day.  But she did say she was up for visiting Grandma at work, so we did that too!

 Then at night, Cicily got some very special visitors!  This is her second cousin Magnolia, visiting us from out of town and her mom Kristy.  Magnolia usually pulls on her brothers' hair before bed, so tonight Cicily was happy to fill in and get her hair pulled.

Wednesday

Wednesday was a truly great day for Cis.  Her trach secretions were normal looking, she woke up early and was happy all day!  We were being silly while folding clothes in this pic and she was making her no face.  Every time I try to capture a true no face she starts smiling immediately as the camera comes out.  I asked her to just tell me no so I could get a good picture of it and she really tried, but just couldn't keep the smile out of it.  Classic Cis, classic.

The hospice nurse came today and said again it's very typical of peds hospice patients to have really good times and then have bad days come from nowhere.  It was very reassuring.  We absolutely love and enjoy the good days.  But it really makes me feel like I'm going crazy.  I told Cicily's school nurse that I'm glad she and Chris see Cicily's up and down days too or I would really feel like I was making things up.  The good days give us such hope and make me question our decisions.  A roller coaster doesn't even begin to describe it.

 Monday ready for school, looking good in her cute outfit.  I can't remember why she was signing Sophie, but I love the goofy smile. 

Cicily has been sleeping VERY well the past week.  We've determined that her stomach issues were due to so many antibiotics and a build up of yeast in her gut.  Now that we have the yeast under control, her intestines have been very quiet, it doesn't hurt her to move her legs and she's been sleeping well at night.  Hooray

Playing air guitar for uncle Adam's birthday today!  Cis had a slow start to the day today, slept in and then chilled with Mom and listened to music in bed.  She's starting to get yellow, thick secretions.  This is the point where we have always started antibiotics as this means a respiratory infection/pneumonia is starting.  Given that her intestinal issues will come back with antibiotics and the fact that even the "silver bullet" ones haven't been truly effective this winter, we have decided to let her ride it out without them.  Chris and I prayed about the decision and both feel peaceful about it, which is good as there isn't really a satisfactory other option.  She's a little more tired today, but still enjoyed school, playing with sisters and busting up laughing at silly slapstick stunts.

I went to a craft store to buy some things for her funeral.  When the checkout lady was asking me what project I was working on I said, a sign in book...  I couldn't get the words, for my daughter's funeral to come out.
Then while Cis was at school my Mom and I went to the florist to talk about casket sprays.  It's going to be beautiful and perfect for my girl.
It is the most out of body experience to make preparations like this for your daughter.  I go and do it, but feel like it's not necessarily me saying words like casket, funeral, 10 years old, etc.

Best buds and family weekend

Friday Cicily took a couple hours off school and got to do this.  Maya reading books to her is definitely her happy place.  Maya has a library in her room and she checks out books to Cicily and Sophie.  Cicily signs Maya to ask for Maya's library all the time when Maya's home.  

Saturday

 One of Cicily's favorite nurses Ashli and her daughter Andee came for a visit full of laughs.  Ashli is always full of fun times!  Cicily has enjoyed seeing all her besties over the past couple weeks.  Sometimes we joke that she got sick just so she could party with everyone!

 Yes Sophie is holding a chicken upside down and Andee is chillin with our duck.

 Cicily's first friend Aulton came with his family.  Aulton used to live next door to us and at the age of 2 he would use his little boy walker and cruise over to our house to see Cicily every afternoon.  Aulton communicates spirit to spirit just like Cis.  We're so happy he's still comfortable enough at our house to just lay out on our couch.  We tease Cicily about marrying him someday.  She gets all coy and smiley about it.

 Aulton's little sister Lyla was so sweet reading a Minnie Mouse book to Cis.

Sunday

 Cicily woke up very unhappy very early Sunday.  She had some gas and stayed awake a bit then went back for some needed sleep.  (She was very sad and in pain, but a few seconds after this pic, she knew I was taking pictures so she started smiling - classic Cis.)

 Sophie brought cards home from her class at church for Cicily.  It was very thoughtful.  Cicily really enjoyed having Sophie hold each card for her to see.

 Oaklynn and her mom Whitney came for a nice visit.  Whitney and I have been friends for a few years, brought together by our special girlies.  It's humbling to be with courageous spirits like these girls have.  This was the first time Cicily and Oaklynn have met and they were all smiles and holding hands.  We're lucky moms.

Tonight we played Disney Apples to Apples.  Cicily was busting up at any answer that was silly or ironic.  She'd always choose the most off the wall answer and laugh like crazy about it.  Once the card was "pretty" and she chose "Captain Jack Sparrow".  And in honor of her teacher, when the card was "fancy" she chose "teachers".  Cicily has always had a very obvious sense of humor, but this past week she has really been letting loose and laughing a lot.  We think she's just happy to be here while she can and is soaking up every hilarious moment of her life.