Friday, February 7, 2014

An early Birthday...

Yesterday we celebrated Lucy's 6th birthday early, the kids REALLY wanted to do this for their sister.  They planned everything from the guest list, to party games complete with "good" prizes, and of course the decorations.  

It was a "Handy Manny" themed party, sort of.

If you didn't already know, our girl, she loves Handy Manny!  Jack made for Lucy out of paper all of Manny's tools and tool box.  Jack is an origami whiz, he can make just about anything out of paper.  Anywhere that Jack goes, the origami is sure to follow:).

Lucy's actual birthday is not until the middle of March, the middle of March feels too far away.

This week has proven to be a really difficult week for our girl.  Her pain was out of control on Monday. By Tuesday she was miserable but we could not increase her narcotic medications any more.  We believe that the opioid receptors in her brain are saturated and as such cannot absorb any more narcotic medications.  She is proving to everyone yet again just how impressive she is, the amount of pain medications that she is taking in is unbelievable!  In an effort to give our girl the comfort she so deserves we started her on a continuous infusion of a sedative medication in addition to adding another pain medication that targets different pain receptors in the brain.  This combination of meds appears to be working at the moment, and at the moment we are grateful for this.

Our palliative team discussed with Drew and I this week that we are faced with having to decided between a more alert Lucy who experiences pain, and a sedate Lucy who is not experiencing pain.  Seriously, there are no easy decisions e-v-e-r!  In an effort for Lucy to be more alert for her party, we dialed back a bit on her sedative med so that she could be awake and enjoy the kids and festivities.  It worked for a short period of time, but then the pain returned and so too did the continuous infusion of sedative medication.

Lucy was very specific about what the menu was going to be for her party.  In her softest weakest voice ever she very clearly requested pizza, vanilla cupcakes with white frosting, and a purple heart cake.  Keeping in mind that she can't eat, we believe that she enjoyed the food more than anyone at the party.  Our dear friend Gina went above and beyond and poured her love into making Lucy the most precious purple heart birthday cake and cupcakes.

We sang Happy Birthday for her three times - the traditional way, in Chinese thanks to our friends the Puffs who have been learning Chinese while living in Hong Kong, and the elementary school way complete with cha-cha-cha's.  Lucy loved it and even tried to clap her hands after each chorus.

When you ask Lucy how old she is going to be just she just shrugs her shoulders.  In my mind she will always be my baby.

I fought back so many tears, the thought of our little girl not being here with us anymore to celebrate any more birthdays, it was too much for me think about.

7 comments:

Carrie said...

So glad you were able to do this for your girl. I'm sorry to hear about her continued struggles with pain and will continue to lift her up in prayer that God will give her comfort she deserves. Sending our love and birthday wishes to lovely Lucy!

Piper said...

How special this must have been. And it breaks my heart for you.... prayers for peace and comfort.

Kim Anderson said...

praying for you daily. May his peace cover you all.

johnm said...

"and she treasured up these things and pondered them in her heart." Thanks for sharing. Each moment, no matter how painful, is one more treasure given that you will ponder - maybe in the car or on a beach on in the shower. Tears will flow but so will the love that remains always. God's peace be with you all.

Sara said...

May God hold all of your hearts and minds to give you each the comfort you deserve. I am so sad for each of you, and I admire your grace through all of these trials.

Pradanurse said...

Thanks for allowing to me to help care for your precious little girl and allowing me to share time with your family! You guys will always have a very special place in my heart!

Pradanurse said...

Thanks for allowing me to help care for your ANGEL. Your family will always be in my hearts! The Marletts are an awesome display of love and family.