Day 35 In Boston - Small Steps

Innie slept a lot last night.  This morning, she was visited by Bethoven the DOG who made her giggle.

I finally got India to eat 1/2 an egg (con mas caliente salsa) for lunch.

It's a beautiful day here in Boston so I'm going to try to get India outside for a few minutes.  I want her to have the fresh warm air hit her face and enjoy smells other than her hospital room and my farts. 

India has been confined to her hospital bed for almost a month now...

And the end result:

Day 34 In Boston - Not Doing Well Today

India isn't doing well, not sure why.

The Doctors are putting her back on IV fluids and an NG tube to try to get her over this hump.

India refuses to eat or drink. She isn't smiling and looks really bad.

India's pain is increasing to the point she falls asleep after each hurt attack from the exhaustion. 

We are trying to keep her spirits up and get India back on track.

db

Day 32 In Boston - Another Long Night

Not much sleep last night. India is having bouts of pain about every hour when her meds start to wear off.

Day 31 In Boston - Out Of Surgery - Painful

India is out of surgery and the ICU.  The first few hours were very painful for her; she is ok now. 

They removed the "pins" from her knees, x-rayed her spine and did bunch of blood tests.

The doctor is worried about the curvature of India's' spine and its impact on her heart, hips and lungs. The scoliosis is only 3 points away from being dangerous and requiring surgical intervention.  She will have to wear her torso brace 24/7 if possible to fend off a major surgery and more pain.

Day 31 In Boston - Post Surgery - In Surgery

India is in surgery now. As always, she was scared and wanted to go home.

Day 30 In Boston - Post Surgery - A Song Brought Her To Tears

Yesterday, two beautiful friends of my Buddhist Nun sister "Kelsang Dechok" who are complete strangers to India and I drove to Boston from Rhode Island. Angela and Jason came to meet India to give us some emotional support.

Well... they brought good will, a guitar and bracelet making material; the result was amazing.

Long story short, after a beautiful charm bracelet was made with the help of Angela and shortly thereafter being proudly worn by India (to this moment) - Jason sang songs.

I've never seen my child react the way she did today. 

India wept happy tears, smile on her face, as her cheeks regained color for the first time in weeks. I kneeled on the floor watching as my bed ridden daughter moved her head back and forth to the rhythm of Jason's touching tunes.

Angela and Jason took my India from her undeserved hospital bed today to a truly beautiful place in her mind; she was given the gift of respite. All of us who watched were deeply moved.

India has been confined 22 days to her mechanical bed with attached devices that flash and make various "beeps"; day in and day out.

India is awoken every hour by strangers who put fluids and pills in her mouth and arms.  The result is my daughter's spirit and personality being reduced to nothing more than blank stares and exhaustion at times.

However, today India again was blessed with something beautiful and at the hands of stangers.

And right now, she is in a rare and much needed deep sleep.

db

P.S: If you look at the lower photo, you'll see my "Baby Girl" is crying.

Day 28 In Boston - Post Surgery - Day #1 With Sherri.

Good Friends

Day 28 In Boston - Post Surgery - A VERY Cool Visit From The Good Doctor.

India's good pal Sherri made a surprise visit. She flew in from Denver last night dressed like a doctor, her face hidden behind a surgical mask.

I'll let the video tell the rest of the story.

Day 27 In Boston - Post Surgery - She Is Famous!

CNN came and did a segment with India and "Tucker" the "therapy" dog. 

India was so happy...

Day 27 In Boston - Post Surgery - She Loves The Young Man

Day 26 In Boston - Post Surgery - CNN

India is scheduled to be on CNN today with a special needs dog. This furry friend will fill in for India's boyfriend "Daniel" this Valentines Day.

Day 24 In Boston - Post Surgery - A Humble Request

The past days have been bad for India and myself. She is having a lot of pain and our stay has been extended for a considerable time here in Boston.

I'm wanting my wife and children to come be with us because I believe it will be a huge boost for India's spirits if her siblings are running around her hospital room making a bunch of noise; bringing smiles to India's face.

India has been in the same hospital room for over 2 weeks and now will most likely double that; not including rehab.

India and Nikki

India and Marion

India and Abbie

India and Vikki

If anybody has any extra frequent flyer miles, I'd be grateful beyond words.

I'm humbled to make such a request but - here I am.

Thank you for your consideration.

https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

Day 24 In Boston - Post Surgery - "2nd Attempt Off Of Traction"

India and I started the day hopeful again despite the unthinkable just hours before.  We wake up each morning with hope despite a darkness most can't fathom that follows us like a shadow.  

I know this sounds incomprehensible, but "by the grace of God", most never experience what India and I do. 

Imagine holding your child's head pressed against yours as you sing, hum, or talk about beautiful times as you're trying to give comfort to your "baby" while your child screams in pain; shaking.

All the while, the tears of your child mixes with yours; burning your eyelids. 

Then your child's saliva begins to drip into your mouth from their frantic screams and you can taste their fear and pain in a way most never do.

Think about having to feel your child's sweat from the pain that is so intense that it saturates the clothing and bedding; being mistaken for urine by the nurses and doctors.

What about holding your child as she or he trembles and begs for help as the nurses and doctors are calling a "stat" because of a critical situation; with "your" child. Feeling the panic and fear while your child looks into your eyes asking for help over and over.

This has been our life before and has now been for the past two days.

This is our day today and many days before and nobody deserves this.

Any help would be greatly appreciated.

https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

Day 24 In Boston - Post Surgery - "1st Attempt To Remove Traction"

Two weeks ago yesterday, Monday January 27th, 2014 - India had her hip/femur surgery at Harvard Boston Children's Hospital.

  

Yesterday morning, we took India off of her traction. Everything went well. India was making jokes with the nurses and talking nonstop about marrying Daniel.

A few hours later, I went to get India lunch. Just as I was getting back to the hospital a nurse calls me and says "not an emergency but that I should get back ASAP".

The minute I entered the room, India started sobbing and grabbed onto me asking for help; she was in a lot of pain. I tried to sooth her every way I could think of, including handing India a photo of her boyfriend "Daniel".  She put his picture against her lips, kissed it and then started crying again.

http://moomock.blogspot.com/2013/06/beautiful-love-may-24-2013.html

The nurses gave India pain meds. When that didn't work, they called a "stat" with the Orthopedic team. The Orthopedic team quickly put India back in traction and her pain eventually stopped. 

The doctor said they need to keep India in traction for another week.

India went to bed holding Daniels photo.

https://www.youcaring.com/medical-fundraiser/she-doesn-t-deserve-this/114808

Day 22 In Boston - The Day Started Good But Ended With Some Pain

India was a happy camper today until about 5:00; when the pain kicked in.

I'm grabbing India some good dinner, will get her super cozy and we will watch "Mamma Mia" for the 5th time today.

Tomorrow is going to be a rough and painful day. The doctors are going to try to remove her traction.

I'm keeping my fingers crossed that it goes smoothly.

We are grateful for any donations.