We are thankful for so many things.  Here are just a few:  Our supportive families, my sisters for literally dropping everything to take us to NYC at a moments notice, our caring and attentive friends, the warm sunshine, Novalie's heart that it continues to do what it's supposed to do, The Zone, the Family Resource Center at Mt. Sinai, brilliant doctors, nurturing and intelligent nurses (there are about 40 of you, and we love you all!), COTA, our generous community, our supportive church, everyone who signs the guestbook, The Childrens Cardiomyopathy Foundation, my husband for working so hard to give me the blessing of caring for our children full time, my Dad for doing all the yard work, our elementary school, Central Park, The Transplant Living Center in Manhattan, Child Life Specialists (who have guided me through the ups and downs of parenting Novalie in the hospital setting), our Social worker, the hospital chapel, and of course Novalie's future donor.

As far as me, I'm a bit fatigued.  It's hard to believe that we've been living in the hospital for 11 weeks.  Novalie hasn't smelled fresh air or played outside in almost 3 months!  Whew!  This is getting tough.

Novalie is the picture of strength.  She's truly incredible.  She directs her care with the nurses.  It's her way or the highway!  I can't blame her really.  She takes her own temperature, puts on the leads for the cardiac monitor, and puts on the pulse oximeter all by herself.  (with nursing supervision of course)  And she's a pro with all the tests performed. 

She's certainly tougher than me.

Love, Kathy

Novalie is truly made of tough stuff.  I'd be out the door weeks ago!  She's been through so much and still maintains a happy cheery disposition.  I think meeting other patients and showing them the ropes gives her ego a needed boost.  Don't get me wrong.  She has her strong-willed moments of anger and resistance.  But lately, it's been such a calm and happy time for her.

These past few weeks have been immensely trying on our whole family.  We've been through the ups and downs of hospital life.  I am so grateful for my wonderful family who have stuck by me when I could barely hold myself up.  Our family has dropped everything in their lives to committ to our lives.  Thank you to my sisters, my parents and our extended family.  Without you, Thanh and I couldn't do this.

Also, we're coming off a weekend of fun for Novalie!  Her cousins and sister were here!  They played house, tic-tac-toe, watched Sponge Bob, ate meals and just laughed together.  It was so refreshing for Novalie to do normal things with her cousins and sister!  Great fun for her.  :)

Love, Kathy & Thanh

Last week, Novalie's doctor gave us the news that there was  a heart for Novalie.  But after some time, her doctors had to decline this heart for medical reasons.  We certainly felt a whole host of emotions!  Excitement, anxiety, relief, hope, bewilderment, and fright all ran through our veins.  We also felt grief and pain for the donor family.  This was their darkest hour.  They selflessly donated to possibly many patients.  We pray for their healing.

Novalie is still fine.  We'll continue to wait for her gift.

Thank you for listening,

Love, Kathy & Thanh

Novalie graduated from Kindergarten!  Such a proud moment for us!  She planned her own party with invitations, homemade chocolate chip cookies, and the best part:  Daddy and Jade were here to celebrate too.  It wasn't easy hounding her to read and do her homework but Novalie completed all her homework each and every day! She loved her teacher also.  We're so happy that she won't have to repeat Kindergarten.  She wouldn't understand not being promoted to 1st grade.  She did great! 

Love, Kathy

Novalie has had her long term IV replaced which required anesthesia (sp?) the other day.  She had to wait until 3pm for the procedure.  So she was unable to eat breakfast or lunch that day.  It wasn't pretty.  She was hungry and mad!  The line is in her arm awkwardly this time and her arm is so sore.  She's allergic to the germ busting solution that they used on her so we're looking at red itchy hives.  A rough patch indeed.

I know, big picture here.  But it's these little things that build on each other that make me want to scream.  And yes, I know this is only the beginning of tough times. The Mommy in me makes it's hard not to sweat the small medical stuff.  

 On and upward.

Today should be a better day.  She can go back to school and The Zone.

Her grandmother has been here so it's been so nice for her to play and talk to someone else. 

This morning Novalie's Child Life Specialist created some therapeutic play.  Novalie drew pictures of things that she hates about the hospital.  The pictures were put on the floor.  Then Novalie threw wet tissues at each picture that makes her upset about being here.  It was so good for her to do.  I could tell that it was a great release for her and a great relief to know that it's ok to be mad about things.  She drew pictures like the monitors, the cardiac wires that she's hooked up to 24/7 (they're on her chest, toes, and leg!), and a picture of herself looking tired from all the interruptions in the middle of the night.  What a great few moments for her.  She would shout, "Take that blood pressure cuff!" as she whipped the wet tissue at the picture!  Priceless.

The hospital has its own TV channel for kids or KZTV or Kids Zone TV.  They broadcast games, puppet shows, and music just for kids in the hospital!  Novalie has had the priviledge to co-host a handful of shows!  It was so great to watch her on TV.  She's such a natural.  She just beems with pride.

She's attending school in the classroom.  After school,she actively participates in group sessions in the Zone.  The Zone is an interactive play area for kids in the hospital.  The Zone is amazing!  Think of it as a smaller version of the Strong's National Museum of Play.  Her room is nearly filled with her artwork and creative designs that she has completed.  Novalie is now the air-hockey champion!

Novalie has a nice routine to her days now.  She easily waves goodbye to me when the school "bus" picks her up.  She's still so good about all the wires and tubes everywhere.  Got to give her credit for that.  I know I'd be so frustrated by now!  She thinks it's so cool to press a red button and someone comes in!  I just hope she doesn't get too used to that concept. ;)

She's played with other kids which is a nice change for her.  She does say that she misses her friends at school and wants to play outside.  But it's been easy to redirect her to other actitivies.

Tomorrow Uncle Andy will visit!  She's already told everyone that tomorrow is a special day!

See you later,

Kathy & Novalie