Monday, February 29, 2016

Leap Day - February 29, 2016

There was nothing to report yesterday, but today was Lilit's last day at Mt. Sinai. Tomorrow she's making the leap and starting a new month in the rehab facility.  Hopefully we will get more detailed updates about her physical progress then.

Friday, February 26, 2016

More Of The Same - February 25 & 26, 2016

Lilit is doing very well.  She is eating and drinking nicely and focusing on her exercises.  She is walking with the help of her physical therapists.  Lilit's spinal curvature has decreased from 135 degrees pre-surgery to 45 degrees post-surgery.

Lilit is likely going to transfer to the rehab facility on Monday.

Wednesday, February 24, 2016

Waiting - February 24, 2016

Lilit is in good spirits.  Today, she walked her furthest distance to date since the surgery, going from her bedside down half of the hallway. She used her rolling walker and had help from the physical therapist.

Still no word when Lilit will be cleared to transfer to the rehab facility.

Tuesday, February 23, 2016

No News - February 23, 2016

Lilit is well.  She is eating, drinking and working on her strength and mobility.  Everyone is eager to find out when she can transfer to rehab.

Monday, February 22, 2016

Keeping On - February 22, 2016

Siranoush reports that Lilit is feeling well.  She is eating adequately and her GI issues are improving.  She is using the bathroom again and happy to leave diapers behind.

Lilit is also trying to walk more, but feels scared to use her left leg, the one that used to be significantly shorter than the other up until a few weeks ago.  Lilit never before had her legs be the same length and touch the ground evenly, so it will take some time to get used to it.  Once she moves to rehab, the physical therapists will assist Lilit in adjusting to the changes her body has undergone.

Sunday, February 21, 2016

More Progress - February 21, 2016

Lilit is in good spirits and increasingly taking charge of her own recovery.  She has requested her rolling walker and taken a few steps with some difficulty, but proud and happy about her own effort.  She's eating more than ever and trying to accept her remaining medications by mouth.

Lilit is enjoying the play zone provided by child life services where she can play with a multitude of toys and participate in various guided activities.

Saturday, February 20, 2016

Loveliness - February 20, 2016

Lilit is having a wonderful day.  She is now able to sit up without support and move herself from the bed into the chair.  Her catheter has been removed and she is drinking quite a bit on her own.

Lilit was thrilled to have a visit from new friends Lili and Teni...

... and to receive a costume to play dress-up.

Friday, February 19, 2016

Moving Right Along - February 19, 2016

There's not much new to report.  Lilit continues to make strides with her eating and physical activity and should be ready to get into rehab next week.  Once there, she will be receiving two hours of PT and one hour of OT per day along with mandatory schooling.  This will be the first time in her life that Lilit participates in a formal educational setting focused on academics.

Thursday, February 18, 2016

Step by Step - February 18, 2016

Lilit is doing fine and looking great.  She will need to be weaned off her last pain medication, keep up her caloric intake, continue with PT, and overcome her intestinal challenges before she can move to rehab.  She should be out of the hospital by the end of next week.

Lilit continues to receive presents from many people around the country who love her.

Lilit and Lena

Due to Lilit's extended stay in pediatric intensive care, the cost of her treatment has increased beyond the initial estimate.  If you would like to help SOAR in covering expenses for Lilit, please follow the Go Fund Me link on the right hand side of this blog.  The link does not seem to work well via cell phones, but is reliable when accessed from a computer.

SOAR would also like to express sincerest gratitude to the attendees of the 5th Annual "La Festa Del Barolo" fundraiser.  This gala dinner benefits Mt. Sinai Hospital and when asked specifically to give toward Lilit's medical expenses, guests donated $48,000.

Wednesday, February 17, 2016

Going Strong - February 17, 2016

Lilit is doing well.  She is moving more and trying to get used to bigger meals.  She will be transferring to the rehab facility soon.

Tuesday, February 16, 2016

Another Good Day - February 16, 2016

Lilit is well.  She continues to focus on eating and drinking as well as her physical therapy goals.

These photos where taken on Sunday when Lilit had many special visitors.

Monday, February 15, 2016

Farewell PICU - February 15, 2016

Lilit had another wonderful day even though she wanted a little more peace and quiet for herself at times.  On the other hand of that coin, however, she was also much more willing to work on regaining her physical strength, asking, outside of her official session with PT, twice to be placed in a chair to sit and once to stand while holding on to her rolling walker and with nurse assistance.  She is not yet taking any steps, but slowly building up her confidence to try it out.  What a difference 48 hours make!

Here's Lilit sitting up with just a little support and practicing moving her arms up and down with two physical therapists:

Lilit was eating reasonably well again today and it became obvious that she doesn't like the hospital food when she happily ate some salad, chicken and hummus from a nearby restaurant and later homemade chicken soup courtesy of Naira.  Oh, and let's not forget the bag of Skittles she shared with Ella.

Siranoush read Lilit the book from Ella's classmates.

And the music therapist stopped by in the afternoon and brought lots of joy to Lilit and her new friend Emilia.

Shortly after the music therapist left, Lilit was transferred out of PICU back to her original room on the fifth floor.  She was very happy to be there again and see the nurses who had taken such good care of her prior to the surgery.

Even though there were tears when Ella and Lilit had to say their goodbyes this evening...

... it's been a blessing to see this gorgeous smile again:

Sunday, February 14, 2016

Valentine's Day - February 14, 2016

Lilit had a very good Valentine's Day.  Visitors started to arrive early and kept on coming through the afternoon, including folks from SOAR, from Lilit's orphanage as well as local friends.  Siranoush continues to take loving care of Lilit through all of these happenings and has begun to challenge her more toward physical recovery.

Lilit got to spend about seven hours with Ella today and they had a wonderful time.  Ella was there to cheer Lilit on when she was asked to sit up in a chair for as long as she could.  She lasted three hours and got more comfortable with sitting as time went by.  Initially she was a little upset about it though, so Ella showed sisterly solidarity by posing for this picture:

Lilit's nurse also asked Ella to encourage Lilit to eat and drink more which she did.  Lilit did a wonderful job increasing her intake today, enjoying mashed potatoes, chocolate pudding, a banana, some juice and fruit smoothie as well as homemade sugar cookies.

The medical team wants Lilit to begin moving her legs more, to stretch them out and to bear weight again.  Lilit is a bit reluctant, but she worked very hard with the physical therapists this morning to stand for the first time since the surgery.

Meanwhile, Ella and Lilit had quite a bit of fun trying to scare the nurses and handing out the Valentine's cards that they prepared yesterday to the staff.  There was much laughter and mischief.

After all this excitement, two precious Armenian princesses needed a nap before they were ready for more visitors.

Overall, Lilit did great today and is well on her way to making it out of PICU.

Q & A - Maybe - February 14, 2016

If anyone reading here has questions for Lilit, please leave them in the comment section.  I will try to get answers, but Lilit still has a sore throat, so I make no promises.

Friday, February 12, 2016

Feeling Better - February 12, 2016

Lilit looks wonderful and happy today and gladly accepted some juice and a donut for breakfast.  She will be receiving a regular lunch soon.  Lilit is speaking in a whisper due to her sore throat, but enjoying her surroundings.  Her medical team will try to get her up and walking later today and hopefully out of PICU by Sunday.

This morning, Lilit received a special gift from the SOAR Ventura County chapter and was clearly excited.

Thursday, February 11, 2016

Take 2 - February 11, 2016

Lilit was extubated this afternoon and is trying, once more, to breathe on her own.  So far, she is doing well.

In other news, Ella's entire first grade class wrote notes of encouragement to Lilit and put them together in a wonderful book.

Wednesday, February 10, 2016

Another Bump in the Road - February 10, 2016

Lilit had a good night, but complained of some stomach pain this morning, so the doctors decided to rule out an obstruction via X-rays and postpone extubation until tomorrow, pending Lilit's condition then.

Update: The X-rays did not show anything concerning and Lilit was rather energetic today.  She should be extubated in the morning.

Tuesday, February 9, 2016

Doing Well - February 9, 2016

Lilit had a restful night and did very well today.  Her oxygen was lowered gradually to allow her to breathe more and more on her own.  The doctors hope to make another attempt at extubation tomorrow morning.

Today, Lilit also got a phone call from her friend Ella and it brought big smiles and excitement to both girls.  They cannot wait to see each other again soon.

A note from Siranoush:

It was 6:25 pm when Viviane phoned and Anjella - Ella - spoke to Lilit for about 10 minutes. It was great. Lilit was happy. She recognized Ella's voice. Unfortunately she was not able to talk too much to Ella with the tube in her mouth.  She was just listening to her talk and sing at the end and nodding her head after my translation of Ella's speech. 

Lilit had a number of visitors today, Dr. Caridi, Ash, and Nancy, and she reacted so nicely. She recognized all of them. Ash and Nancy were feeling so good when she shook their hands to say good-bye and moved her lips to kiss both of them.  

She'll be extubated again tomorrow.  Hope for the best.

Monday, February 8, 2016

Breathing On Her Own - February 8, 2016

Lilit was extubated today.  She is breathing on her own and only receiving supplemental oxygen via a nasal cannula. She is likely going to be offered food and drink by mouth later this evening.

Update 7:45 pm - After a few hours of breathing on her own, Lilit's efforts to do so became labored and the doctors decided to re-intubate her.  She will be on full support until tomorrow when the process of weaning her off oxygen begins again.  In a few days, another attempt at extubation will be made.  This is Lilit's first major challenge post-surgery, so please keep her in your thoughts.

Sunday, February 7, 2016

Getting Stronger - February 7, 2016

Lilit is much more awake today than she has been since January 27.  She even listened to some Armenian music this morning.

The doctors decided not to extubate today to allow Lilit's lung and bowel function to improve for another 24 hours.  They will re-evaluate tomorrow and are still hopeful for the tubes to come off then.

Saturday, February 6, 2016

Recovering - February 6, 2016

Lilit had a good night. She woke up a few times, but fell back asleep with one of the staff reading to her.  She has been more awake throughout the day today and is likely going to be extubated tomorrow morning.

We decided to give Lilit a little privacy at this stage of her treatment and not share photos, but as soon as she's up and smiling again, we will resume posting pictures and videos here.

Friday, February 5, 2016

Waking Up - February 5, 2016

Our Sleeping Beauty will be gradually weaned off the sedation today to wake up. She is doing well.

Update 4:30 pm - Lilit continues to do well.  She has woken up briefly 6 -7 times thus far today, each time asking for food and drink.  Since Lilit cannot take anything by mouth at this point, the nurses are dampening her lips with a sponge.  Lilit is not complaining of pain and drifts back to sleep after a few minutes of being awake.  Her sedation levels are being lowered slowly and continuously.

Thursday, February 4, 2016

Resting - February 4, 2016

Lilit, thankfully, had an uneventful night in PICU and is getting some much needed rest.  Her doctors have decided to delay waking her up for one more day until tomorrow morning to reduce the level of pain she has to experience as she recovers.  More news as it arrives.

Wednesday, February 3, 2016

Surgery Part 2 - February 3, 2016

As planned since last week, Lilit will be undergoing the remainder of her spinal surgery today.  Her X-rays and CAT-scan look good and she and her medical team are ready.  The procedure will start at 9:15 am and is expected to last no more than four hours.  Updates to be added here as they become available.

Update 9:36 am - Lilit is on her way into the OR.

Update 2:30 pm - The surgery is taking a bit longer than expected again. Dr. Caridi is currently placing the rods which should be complete by around 4:30 pm at which time the plastic surgeon will close the incision.  Target time for being finished is 6:00 pm.

Update 4:05 pm - The rod placement is complete and the plastic surgeons are closing Lilit's back now.  Dr. Caridi said Lilit is out of the woods and will be brought out of sedation tomorrow morning.  However, she will remain intubated through the weekend while gradually weaning off oxygen.  Extubation is expected on Monday which will be the earliest point at which Lilit may be able to speak.  Physical rehabilitation will begin on Monday as well.

Update 6:04 pm - Lilit's surgery is complete.  The SOAR team will be going to see her in PICU in about an hour.

Update 6:48 pm - Lilit is settling into PICU.  She will be heavily sedated until morning.

Tuesday, February 2, 2016

Waiting - February 1 & 2, 2016

Lilit is well.  Her surgery should be completed tomorrow.  Updates will be posted on this blog as they become available.

Prior to her surgery, Lilit made a few videos singing for her friend Ella (known to Lilit as Anjella).  When she heard this particular song, Ella told her mother (aka the author of this blog), "I remember this song.  I do.  Lilit and I used to sing it quietly at night, holding hands in bed, and then we would go to sleep."

*Ella pointed out that the wrong song to match this story was uploaded, so here's the correct one now.

Monday, February 1, 2016

Sleeping On - January 30 & 31, 2016

Lilit continues to be stable and under a certain level of sedation, but did wake up a little bit on Sunday and immediately tried to communicate.  She's looking stronger and better with every passing day and should be in good shape for the completion of her surgery on Wednesday.  Lilit has visitors with her most of the time and Siranoush is watching over her with great devotion.