Friday, March 14, 2014

Day 54 In Boston - We are headed home hopefully soon...



Yesterday was very long. We had a "team" meeting to outline what India needs.

The general consensus is to get India back home ASAP.  She is asking for her sisters and brother - Marion, Nikki and Abbie. And needless to say, her boyfriend Daniel.

The thought is if she can have more moral support, her spirits will improve and her body will follow.

We will come home soon if all goes well. It's going to be an intense process as India is very weak and requires a lot of assistance; way more than normal.


We are returning on a "Med-Flight" because of India's condition. There is no way she could do a commercial flight. India can't grasp the concept of a private flight yet. I've told her we are going to party like rock stars - watch Willy Wonka and eat Ice-Cream.

Once we get home, India will need enormous amounts of attention and TLC. It's not going to be easy. 

It's my plan to have India make an unnounced visit to school for an hour or so not long after we return; once she is strong enough.  India giggles when we talk about her surprise school visit. And of course she starts talking about her boyfriend Daniel and how she is going to marry him; she is in love.



India also had a series of new x-rays yesterday. Her hips are looking good, India's back however is a different story.

The x-rays were very hard to look at. India's spine is terribly twisted and getting worse. She is +/- 3% points from her scoliosis becoming a danger to her heart and lungs.




No set timeframe on how long until India has to return to Harvard Boston Children's to have rods placed along her spine. But it's safe to say the time will come quicker than anybody would like. It's going to be another intense surgery that is critical for my child and one I dread.

I told the doctor that we needed to buy as much time as possible so India could recover, become stronger, be a teenager and enjoy life; the doctor agreed.


I am however worried sick that when we return home, the "Dementor" will again refuse to use India's Orthotics and/or medications as she has done in the past. India can't afford anymore narcissistic shennagins with complete disregard for the children.

(she·nan·i·gans
SHəˈnanəgənz/
noun
informal
  1. 1.
    secret or dishonest activity or maneuvering.)









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