Showing posts with label Cerebral Palsy. Show all posts
Showing posts with label Cerebral Palsy. Show all posts

Tuesday, April 8, 2014

Day 10 - UNM Hospital, ABC News

Thursday, April 3, 2014

Day 6, 7, 8 - UNM Hospital, Update

The last 3 days have had some beautiful moments.

India had a suprise visit from her boyfriends mother. Daniels mother came to the hospital to let India know that daniel is going to come visit her this coming week.  India couldn't stop smiling as she stared out the window thinking about her love.

India's teachers Mrs. Lydia and Mr. Stuart dropped in to see their good friend. When they came into the room, India couldn't believe what she was seeing was real.

My dear friend Ray made the 600 mile drive to come support me and my family. I can't begin to say just how much his being here helped us. 

Wednesday, April 2, 2014

Day 5 - UNM Hospital - Pretty Good Day

India slept a whole lot today. We aren't sure if it's from her new meds or if it's from exhaustion brought on by the horrible pain she's been experiencing. 

She had another IV line fail, causing her arm to swell up with fluids. It's the 6th line to go bad in 4 days and this one was very painful. You can see in the photos below that India is holding her arm tightly.

India's weight is a huge concern, she is hovering around 55 pounds at 15 years of age. I put out a post on Facebook asking family and friends to bring food to the hospital so I could fatten India up. My little girl just isn't very interested in hospital food. And to be honest, we were both lonely and wanted some company.

I guess the past year has taken it's toll on me. I was told tonight that I was looking "chunky" by my old pal Barbara from Garcias on Central and my friend "Heidi" aka "1 of 9" said that I was looking old...

I'm hoping for another good day tomorrow, we deserve it.

Our view just before sunrise.

India trying to work the pain out of her arm after the IV failed.

India's swollen arm from the IV failing.

I wonder if this is how India sees her shadow.

Crazy Buddhist sister having dinner with India.

Tuesday, April 1, 2014

Day 4 - UNM Hospital, Nerve Damage & Weight Loss

The doctors are now looking at the possibility of India having nerve damage and that being the cause of her pain. They are starting her on Gabapentin in a few minutes to try and target this debilitating pain.

We weighed India today and she has gone from 67+/- pounds to 55+/- pounds. It's very difficult to get India to eat now. Imagine your 15 year old weighing 55 pounds.

India slept for most of the day; she's sleeping now. Neither India nor I have had more than 2 hours of sleep at a time in weeks; we are exhausted.

She is incredibly pail and fragile. As I sit and watch her sleep, I pray that India will regain the strength to recover and get on with life.

And all the while that this living nightmare is taking place, it's only me who is by her side each and every day; no excuses.

This breaks my heart and if I'm distraught, imagine how India feels.

Day 4 - UNM Hospital, The Pain Isn't Going Away

India isn't doing very well.  Her pain is back and wearing her out. None of the narcotics are working.

The doctors now think it's possibly nerve damage of some sort. They are moving to a different group of drugs that focus on the nerves. 

India and I didn't sleep again last night for the exception of 10 minutes her and 20 minutes there. We are exhausted beyond belief. The major pain last night started at 2:00 am. She is just now calming down.

My little girl can only handle so much.

Monday, March 31, 2014

Sunday, March 30, 2014

Dear God - Your Relationship With My Child Is Frightening Me

"Dear God"
Your Relationship With My Child Is Frightening Me...

My beautiful India is my best friend as are her two sisters and brother; I'm sure you know this. India however was dealt a bad hand, apparently under your watch and has now been sentenced to a less than comfortable existence. Did my child fall through the cracks while you were distracted, did you make a mistake? Surely you'd not intentionally inflict this horrible and debilitating pain on an innocent child if you are truly an all powerful, loving and compassionate God. 

As you know dear God, almost every day for the past 15 years, India's big beautiful eyes have looked up at me for help; what was your reason for this undeserved pain placed onto a little girl? You've watched as India time and time again holds onto me with her broken body and tells me that things aren't ok. 

I regularly find myself trying to comfort India as she sobs from the hurt, frustration, fear, or anger. And I have no way to make a difference other than to bury her head into my chest as I rock back and forth and hum. Will you explain why you've allowed this to happen dear God?

God, remember a couple years ago at the park? It's something I've tried to block out of my mind but find myself thinking about all the time. 

You and I witnessed India experience the joy of children her age running up to her at a park. We watched as the kids started asking India questions. They wanted to know her name, why she was in a wheelchair, was it fast and one little girl even said "you're so pretty". 

At that moment I felt a warmth in my soul that I'd never known and wanted to embrace you to show my gratitude. You and I witnessed India become the happiest girl on the face of the earth; smiling from ear to ear. 

But as you're aware God, India couldn't respond to her peers in a way they could understand. I'll never know, why you chose to not intervene, make an exception, perform a miracle and allow India to communicate with those kids; would that have been too much to ask?

If it's true that your power affords miracles like water being made to wine, the Red Sea being parted and your sons image burned onto tortillas, I'd think you could have given a bit of assistance to my child to have the ability to communicate to her friends in this rare but beautiful situation. But I might be asking way too much of you.

So God, when you did nothing, I quickly tried to translate and answer all the children's questions in a silly and entertaining way to keep their attention on my daughter. 

However India's excitement from all these new friends looking at her with big smiles and asking about her, India's body stiffened up and she started to rotate her head back forth.  Then she squealed with delight as her eyes sparkling with happiness.This is when the children lost their smiles and their questions for India stopped. They didn't understand India or what her body was doing; they became afraid.

One of the kids asked me in front of India “what’s wrong with her”? Another said “why is she doing that”? India sat there in her wheelchair watching helplessly as something beautiful become tragic.  India's smile went from an ear to ear pure joy smile to a nervous grin. India looked up at me hoping I could do something. 

The kids turned and ran off before I could say a word. One of them stopped and turned around to look at my daughter. India still was putting on her nervous grin as she glanced back and forth between me and the kid who had stopped turned around. 

God, after this and so many other harsh experiences that I'd thought you'd protect my child from, she took a terrible physical turn for the worse.  Your "child" India could no longer go to school full time and be with her friends because of her dislocated hips. She'd been reduced to days of floating in a hot bath to manage her pain.

It was one of these days that India decided to ask me the most painful question she'd ever asked me:
  1. Hand in a fist with thumb going up and down = “India”.
  2. Wiggling fingers quickly = “how many days or what day is it”. 
  3. Then India did a new sign which was spiraling her good arm upwards from her hips to the sky ending in an upward pointing position with her index finger.  
  4. She then placed her crippled and functioning hand together at chest level = Virgin Mary. 
  5. Next India lifted her hands to her forehead as she turned her head down onto the tip of her fingers = praying.  
  6. India then took her good hand and placed her face on the back of it at an angle and closed her eyes = sleeping.
My child had just asked me how many days until she gets to die, go to heaven with Mother Mary and rest.

India's pain, both emotional and physical, had caused her to look to the Virgin Mary and Heaven as a place of rest and comfort.  

As you know God, I'd never once taken India to the Catholic Church much less any other church. Yet since the age of 4, she's had a deep appreciation of the Virgin Mary; have you two been talking?

Not long after India telling me she wanted to die and go to heaven, she asked if her wheelchair had to go to Heaven with her.  When I told her "no", India asked "why"? It was explained to her that when she went to Heaven, she'd walk through Heaven's gates on her own two feet and Mother Mary would be waiting for her.  India let out a gasp, swiped her hand over her forehead and said "wheew" in a sign of relief.

India then pointed to her legs and hips and said "owie", then did the sign for going to Heaven.  When I told her "no, you wont have anymore pain in heaven", she started to giggle and asked if I was going to go with her...

Day 2 - UNM Hospital, Nightmare

India had the worst pain attacks she's ever had in her life today. When it happened, they were so jolting that the physical reaction for those who were in the hospital room was frightening. And the pain didn't stop. She screamed in agony for most of the day, into the night and early morning.

I prepared myself at one point for my little girl to die. I could see the sparkle in her eyes disappear, She had never done that before.

Late in the evening, India began to moan. We realized that her IV had failed and the IV fluids were filling her wrist, hand and forearm with fluids. Her forearm began to look like a balloon.

So at 1:30 am, doctors and nurses were trying to place a new line. It took them hours and my child being stuck with needles over and over. They brought in an ultrasound to locate a good vein which didn't help.  A line was finally placed in India's shoulder.

Her arms are riddled with puncture marks from failed attempts to place an IV...