SUNDAY NIGHT UPDATE (11/18, 8:30pm)

Hello Julia’s Army!  For Julia we thank you.  We know many of you prayed and lit candles for Julia.  Today was not one of her best as she fought her BIPAP breathing mask and just did not feel well with nausea being a big part of her day.  Everyone is working hard to improve her respiratory function.  The crew here at UNC’s PICU (pediatric ICU) works hard and truly has good doctors, nurses and staff.  They know their medicine, are responsive and put up with Dad’s many questions (now limited to 5 per hour).  Julia did not have much strength today and struggled to get her breathing steady with the BIPAP machine.  Many things are at work in Julia’s body, and the medical team will continue to work on getting her strong and breathing on her own.  She has certain portions of her lungs that are not expanding yet, and she is not able to breath deep enough to get air into the lower lungs.  Maybe it has a bit to do with her pain from the spine surgery and her chest tube.  She is taking a higher volume of short, quick breaths.  We are confident the PICU folks will get it worked out.  We did manage to get Julia to sit in her chair for one hour.  Although she sat rather lethargically, it helps to get her up and moving some.

We are hoping Julia has a restful night and gets some rest.  Tomorrow she will continue to surprise us and overcome her obstacles.

Family went home today.  John and Nicholas along with Yiayia Stathopoulos and Grandparents Brown were able to visit with Julia.  Christina will be back tomorrow.  Uncle Nick, Aunt Dina and cousin Nicole also visited this afternoon.  Although Julia was not able to converse with everyone, we believe it is good for her to know who was here to comfort her.

As we move into Thanksgiving week, it is most fitting to give THANKS to God, the angels and holy saints, and all of you out in Julia’s World who have kept her close to your heart.  We feel much has been overcome over the past 5 days.  We discussed with Julia prior to surgery that we would take it “one day at a time”.  The surgery is past, the ventilator tube is out, Julia is healing, Julia spoke to us, Julia softly told us “I love you”, Julia held our hands, Julia opened her eyes, Julia waved at us, Julia was able to see her family – siblings, grandparents, godparents, priests, uncles, aunts, and Julia took a sip of Coke today.  What a wonderful 5 days.  We hear it many times to “never take the small things in life for granted”, and it is true.  When we no longer take life for granted, we become grateful for everything we have.  Every day is a gift.  Even more than before, we have a profound sense of gratitude for the simplest things in life.  We will savor these moments with Julia with gratitude.

Day 5 comes to a close and we move into Day 6.  Tomorrow we will see Julia’s surgeon Dr. Campion and discuss progress and plans for the week.

We want to share with you this rather lengthy poem regarding “thanks” titled “Thank You Life” (author unknown).  Good night and Thank You Julia’s Army.      Regina & Harry

Thank you Life

Thank you for this breath

Thank you for this inhale

Thank you for this exhale

Thank you for this Life

Thank you Heart

Thank you for this pounding

Thank you for this pulsing

Thank you for this Love

Thank you feet

Thank you for this walk

Thank you for this run

Thank you for the Dancing

Thank you Eyes

Thank you for the Sunrise

Thank you for the Sunset

Thank you for all the Colors

Thank you Ears

Thank you for The Music

Thank you for the Rhythm

And Thank you for the Stillness

Thank you Hands

Thank you for the Caressing

Thank you for the Clapping

And Thank you for the Holding

Thank you Mouth

Thank you for the nourishment

Thank you for the Wine

Thank you for the Kisses

Thank you Nose

Thank you for the Flowers

Thank you for the Pines

Thank you for the Sniffles

Thank you Arms and Shoulders

Thank you for the Carrying

Thank you for the Burdening

And Thank you for the Hugging

Thank you Voice

Thank you for the Expression

Thank you for the Word

Thank you for the Gift of Creation

Thank you for this Day

Thank you for the Light

Thank you for the Stars

Thank you for the Night

Thank you Self

Thank you for the Laughter

Thank you for the Play

Thank you for You

Thank you for the Emotions

Thank you for the Joys

Thank you for the Tears and Sorrows

Thank you for the Richness

Thank you for the Abundance that is

Thank you for the Abundance that is given

Thank you for the so many experiences and so many things

Thank you for this Dance

Thank you Life

SUNDAY EARLY UPDATE (11/18, 12:30pm)

Julia has been sleeping most of today.  The pain meds are slowing her down.  She is still on the BIPAP machine giving her oxygen and helping her breath.  No real progress last night or today on respiratory.  Lungs are still weak and chest x-rays do not show any improvement from yesterday.  Julia likely will be in ICU for a couple more days.  We hope to get Julia awake so that we can move her into a chair – this will help her get movement.  Doctors are telling us that it is going to take more time in Julia’s case.  They are being cautious with her respiratory, and we certainly concur.

Julia still has a road to travel with her respiratory.  We have to get her lungs working on their own.  Please continue to keep her in your prayers.

It is a nice sunny day in Chapel Hill today.  We hope it is nice where you are today.

We have no update on Micah Arrants on Julia’s hall other than he is stable.  Please remember Micah, his parents and his sister in your prayers also.

Harry & Regina

SATURDAY NIGHT UPDATE (11/17, 11:30pm)

Julia had a nice day today.  She has improved and things are continuing to move in the right direction.  We were able to get her out of bed to sit in her chair and move her around the bed.  She continues to have pain in her back and chest as expected but somehow she pushes through it with a high pain threshold.  She has minimal pain medication now.  We did not progress as far as we would like on respiratory and had to put her back on the BIPAP machine for the night.  We do expect to see more progress tomorrow.  It is just going to take a little more time for her lungs to get where they need to be.  Julia’s color to her face is coming back and the swelling is mostly concentrated in her legs and arms.

It was fun spending good time with Julia and hearing her sweet voice.  Must have told her “I love you” 100 times today and it was so good to hear her reply back “I love you too” – even though her voice is weak, you can hear it and understand.  This was priceless.

Julia had visits this afternoon and evening from her godparents and godbrother, George, Elaine and Zachary Demopoulos, and her Aunt Helen and Uncle Lee.  Grandparents Brown, sister Christina and brothers John and Nicholas were able to spend some time with Julia.  Christina has gone back to State to work on her project and will get a ride back to the hospital on Sunday.  Dad told everyone he would keep trying to get Nicholas into ICU even though the age limit is 12, and the night nurse allowed Nicholas to come into the room briefly and he was able to see Julia for the first time.  Yesterday they would not allow Nicholas into the room.  He was happy to see his sister.  He had a few tough moments when he broke down and cried seeing her in this condition and with all the medical equipment in the room.  He may be 8 years old but he understands what Julia is faced with and has been worried about her for quite some time.  Nicholas like Christina and John has grown up watching Julia’s daily challenges and does not like to see her suffer.  He is very protective of her.  He does not remember much of Julia’s past surgeries when he was a toddler.

We expect more progress from Julia tomorrow.  She did at one point ask for pizza this evening but she is not able to drink or eat yet.  Our goal is to improve and hopefully get out of ICU on Monday.

While all of you continue to keep Julia in your prayers, please also pray for a young man who is on Julia’s pediatric ICU floor.  This young man’s name is Micah Arrants, and he is a 17-year-old high school student from Concord, NC.  He attends Northwest Cabarrus High School and is a member of their track and cross country teams.  After having some weak feelings in his legs back in early October, he was admitted to CMC in Concord on October 15^th and eventually transferred to UNC on October 25^th suffering with unusual blood clots in his body, including his legs, heart and brain.  Today he had emergency brain surgery to relieve pressure and fluids.  He is fighting for his life now.  He has been a healthy and strong young man until this clot situation arose.  We met his mother and sister this evening and had a lengthy discussion about Micah.  Micah has a bright future ahead of him but now faces a very difficult circumstances.  Please pray for Micah, his recovery and strength for his parents and sister.

A pleasant Sunday to everyone.

Regina and Harry