3 great nights

Cicily has had three nights in a row of sleeping comfortably through the night. The first night I woke up at 5 and it freaked me out that she hadn't woken up yet. But she was still breathing and looked comfortable. It's been so nice for everyone to sleep through the night! And now I can even go to sleep free from anxiety of how many times she'll wake up and how bad it'll be.  But also knowing some night soon I'll need to draw those meds again.
Hospice said she'll have bad nights and good nights. The three great nights in a row has been awesome.  It does underscore the fact that Cicily may hang in for months and months.

Peace

Philippians 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.


I just had a friend remind me of this scripture.  Thanks Laura, you're always good at coming up with perfect scriptures for me.  It perfectly describes how you can prepare your daughter to die and still have peace and happiness.  It doesn't make sense, it passeth all our earthly understanding.  But I have felt great peace that I know comes from Jesus Christ.  

Thank you all for praying for us.  It passeth all my understanding to know exactly how having friends and family praying for us gives us such peace and strength.  But I know it's a powerful gift from God.  

Old friends and animals

 After Cicily's GI appointment this morning, she had some old friends visit.  I contacted some of her old bus drivers and aides and they wanted to come visit.  Cicily had such a great time!  These women know her so well and were cracking all kinds of jokes with her.  And one of her faves even brought her cute new baby boy!  Cicily was loving him and the attention.  Thanks ladies, seeing you all again really made Cicily so happy.
I think if Cis could put together a plan for how she would like to peace out from this life, it would be exactly what she's doing - spending quality time with her family, getting to see/hear from old friends, laughing with friends and cousins, holding babies, and spreading love.

In the afternoon we went to the zoo with cousins.  We spent most of our time watching the prairie dogs, all the girls favorites.  Another great memory day.

The case of the great days/horrible nights SOLVED

Cicily had an appointment with her gastroenterologist (gut doc) today.  We told him about how she's been in horrible pain at night but then perfectly happy, typical Cicily during the day.  He said he could shed some light on that.  Apparently the intestines are fairly still except for right after we eat and at night.  Since Cicily eats 24/7, her intestines are mostly active at night.  And I know if I had air floating around in my abdomen and an inflamed colon I'd be calling out for the pain meds all the time.  Cicily amazes me with her choice to be happy.
Hearing a sound medical explanation for the huge swing in how Cicily feels was very reassuring.

Med-less night, Mom & Cis day

Sunday night I woke up at 4 am confused, worrying I had slept through Cicily needing me.  But, all seemed well.  She didn't need any special meds at all last night.  (We're doing tylenol pm and ibuprofen as a rule now at night, seems to help.)  Today her stomach was rumbling awfully bad though.  I can't imagine my stomach doing that and not being in the fetal position in bed.

I asked Cicily several times if she wanted to go to school today (she REALLY loves her school!) but she kept saying no and signing books or Mom.  So she stayed home and we had a Mom & Cis day all day long.  I was honored to be her preference today.  We read books, chased Lucy with the remote control car (big laughs!), had lunch with Dad, did laundry, fed chickens, and read more books with Sophie snuggled together in our green chair.  The quintessential Mom & Cis day.

I also got to talk to Cicily about her dreaded topic.  I kept it short and sweet and went right back to reading.  She was really cool about it.  While we were reading books, I just said Cicily I'm really going to miss you.  But you know we'll be ok right?  She said yeah.  Then we read another page.  And I said, you're going to do some amazing things there aren't you.  Will you come back and tell me about it every once in a while.  She smiled.  

Wonderful gifts

Sunday afternoon a lovely friend of Cicily's and our family came over to give this amazing blanket to Cicily.  She got all these pictures off her blog/facebook and made a beautiful blanket out of them!  It was the first time in 4 or 5 days I wore mascara - mistake!

Later in the evening we were able to have our family pictures taken.  A dear friend arranged the whole thing with a photographer friend.  It's something I really wanted to have happen, but probably never would have gotten around to.  Thank you friends for making that happen so I don't have to have regrets for the rest of my life.  (I will of course post the pics when Cherri is done editing them.)

Great days, bad nights

After having a bad Thursday night, Cicily woke up at 12:30 in the afternoon and had a great day.  

 Grandma came over and gave her an Easter mani/pedi to replace her St. Patrick's day one.  For some reason, Grandma made Cicily laugh so hard when she asked her to tell her hands which nail color to choose.  Cicily was in a great laughing mood all day today.  

Friday night we had to give Cis her morphine/lorazepam combo 3 times.  Her episodes didn't seem as bad as the night before, but there was 1 more of them.  We are still so glad to have fast acting, effective meds.

 Saturday we got to spend a lovely family afternoon at Bumblebee Ranch with HopeKids.
We decided we were going to all have a serious face, so of course Cicily smiles!

  As you can see, Maya and Sophie got to ride horses and Cicily
was very happy to be feeding them carrots!  

 Thank you to Bumblebee Ranch and HopeKids.
We really enjoyed spending a beautiful day together making cherished memories.

 Chris was leaning on Cicily's chair talking to her and Cicily leaned her head over and snuggled in.  I'm really going to miss this.

We also got to ride in a wagon.  

We're sad that the nights are bad.  But, given that the days are full of smiles and belly laughs, we'll take it.