Wednesday, February 26, 2014

Day 39 In Boston - Rough Times

India's having a rough time. She has been in her hospital bed for 31 days. 

My days surround my beautiful baby girls sleep pattern. When she is medicated and falls asleep, I take a walk, bathe, sleep, or even watch TV. It's my only chance to to recharge.

Last night when I came back in the early morning hours, she cried out in pain and sobbed.

Words can't express the emotions...

Monday, February 24, 2014

Day 37 In Boston - A friend in need is a friend indeed; A friend with Chile is better...

A friend in need is a friend indeed; A friend with Chile is better... 

We have been in the hospital for a month now in Boston.

This past weekend several amazing people went very far out of their way to help us in such a beautiful way.

We were surprised with Monroe's chile from New Mexico; a couple blocks from where I grew up. And yummy chile dishes from local Bostonians.

I mixed these wonderful hot morsels with some fantastic stuff that our new friends from Rhode Island brought us. The result was a smile, a big smile in India's face, smacking of lips and a full belly.

Thank you...

Sunday, February 23, 2014

The President’s Speech Tonight - Representative Joe Wilson 9-9-9

The President’s speech tonight was near and dear to my heart. President Obama could have been talking specifically about my life; it was eerie. When my daughter, India was an infant, she was injured at Presbyterian Hospital in Albuquerque; a doctors error. She was born normal but as a result of the doctor’s blunder, she ended up with cerebral palsy, a tri-pelagic. 

When we finally got India home and the dust began to settle, we found that we were over $130,000.00 in debt as a direct result of India's injury. We had no money to our name and had to borrow $5,000.00 from a dear friend to start my current company, Alameda Property Group, LLC. We lived day to day with the horrific fear of our daughter passing away or ending up in chronic pain as a result of our not being able to cover her necessary medical/physical needs. This worry was absolutely crushing to my spirit and yet, I continued to go to work every day, paid my insurance dues and still had this terrible cloud over my head. It's been a constant fight with the insurance companies to cover the absolute basic needs for my daughter. Yet I regularly pay her insurance premiums every month, year in and year out.

Up to this day, Wednesday September 9, 2009, I've had to pay $1,200 + a month in medical insurance premium plus an average of $7,000.00 additional dollars per month for medical/physical care that the insurance companies refuse to pay. This additional care keeps my daughter alive and pain free.
I'm incredibly fortunate that I can usually afford the additional coverage my daughter needs, not to mention the high monthly insurance premium. With the amount of love that I have in my heart for my children, I can't even imagine what it's like for families who aren't as fortunate as I am. I can't bring myself to think about what it must be like for parents who are helpless and must watch their children die or descend into a life of chronic pain and suffering.

When Representative Joe Wilson called our President a "liar" tonight, I was horrified at the insanity, irresponsibility and disrespect that this man displayed. We have a President in office that’s fighting to better the system. Both Democrats and Republicans alike have had decades within my lifetime to do so but yet the overall health care system has remained “status quo”. Here is a man who is willing to take on the immense challenge and yet he's yelled at, during a worldwide speech, by an elected official whose political party has virtually bankrupted the United States of America.

I'm proud as an American Veteran can be for President Obama. I only hope that those who viciously oppose his health care goal never have to personally experience what I've experienced. I hope that they can stop the nonsense, sit down and help come up with something that betters our system as a team.

I’m tired, tired, tired of the political rhetoric from those who don’t personally face the daily challenges of life that the average American experiences. Those privileged politicians who enjoy top end insurance benefits with low premiums. The very same, out of touch, people who don’t send their children off to wars they champion or honestly serve in the military they so quickly put into harm’s way. 

I wholeheartedly support my Presidents efforts and I’m proud of him beyond words.

Saturday, February 22, 2014

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:

Friday, February 21, 2014

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.


Wednesday, February 19, 2014

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.

Tuesday, February 18, 2014

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.

Monday, February 17, 2014

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.


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

Thursday, February 13, 2014

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.

Tuesday, February 11, 2014

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.

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.

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.

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.

Sunday, February 9, 2014

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.