Pressure Sore

Braces/Pressure Sores

Something most of you don't know.

Without these braces Taylor was getting foot drop. We have been using them at night but she woke up with a sore over a month ago. These sores can be dangerous and sometimes don't heal for months even a year.

Foot drop is serious
Pressure sores are serious

I need to find a different solution.
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#spinalcordinjury #pressuresore #afo

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ASIA Test

Spinal cord ASIA Score:

A tool to assess function after SCI, on a scale from A (complete, no motor or sensory function) through E (normal motor and sensory)

The doctors diagnosed Taylor as ASIA A? Interesting.

She has some motor sensory and working on more.

After Taylor's accident in June 2016 they diagnosed her as a complete injury. When she was released from RIC, we then had an evaluation at Shriners hospital in October 2016. She was then changed to an incomplete injury because they saw and felt some movement in her legs and feet.

After being with them for 2 years and seeing improvement they have her marked as a complete injury again and said they never changed her first diagnosis?!.

What I am finding out is these places are controlled by doctors and insurance companies. They do therapy to help you live in a wheelchair the rest of your life even though we have told them her goal of regaining movement and some day walking again.

In my opinion complete or incomplete diagnosis should be based on if your spinal cord was severed or not.

I absolutely despise this test.

If you or someone you love has an SCI and wants to walk again or has bigger goals you may need to do research on your own. Doctors and the medical industry give up on you. They don't believe in miracles. Well I do. We all see them happen.

Why can Taylor or you be one of them?

Taylor goes inpatient to Shriners for 2 weeks but will continue with Next Steps in Willow Springs because they believe in activity based therapy and give people HOPE.

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#Taylorstrong #spinalcordinjury #stemcells #nextsteps #nevergiveup #dreambig #goals

DEAR CLOSE MINDED DOCTORS

Dear close minded Doctors, (future doctors please read this)


My name is Jenny Dagostino and my daughter had an accident June 8, 2016. From the moment the first MRI was done you said she would never walk again.

Why would you tell a young,  healthy,  positive 16 year old that?

Why?

Afraid of being sued? Well shame on you. Have ever been sued for killing someone's dreams and taking away hope? You should be.  Again shame on you.


Do you have any morals? What is wrong with you?

How does that make you feel when you speak those words to another human being?

YOU ARE NOT GOD!

What happened to miracles? What happened to hope? Were you taught that at all?

We were so excited to walk in to the surgeons office and show him the progress that she has made and what did you Do? You told her well yeah sorry but the odds are against you....

What the hell is wrong with you?

That appointment, those words that you spoke, ruined our whole day .....

I bet it didn't affect you at all. And I was a fool to let it get to me.

What happens when a miracle happens? What do doctors say to that? They can't because it's against what they are taught and practice.

Have you ever heard being kind, caring, compassionate? Having respect? Giving hope and never giving up?You may have a degree but you have no manners.

You need to take personal development classes and learn how to talk to people and give them a little bit of hope!!!!!! Is that so wrong to ask? Your bedside manner sucks.

I know everyone is different out there and some Do not believe in miracles or hope but we Do and I will find doctors who believe in Taylor.

I will go to the end of the earth to help my daughter walk again! I believe in miracles, and we have hope and faith!

This is my recommendation to all the doctors out there when you are seeing patients. Please say this instead,


" I can't say you WILL or you Won't, but you Never know. If you stay positive your mind will help heal your body in ways you can't even imagine.

Your brain is a powerful tool! Feed it Right...Have hope, faith, love, courage and strength and NEVER EVER GIVE UP TRYING!!!!!"

Now wouldn't that be a better response,  Dr. M?

Take care,

Jenny Grass Dagostino

(A very determined mom of 4  and daughter team that will prove you wrong)


To all of the families out there dealing with the situation please print this off and look at it everyday you do not have to give up.

Feel free to share this with anyone who has given up.  Your mind is POWERFUL!   Now go get that fight back 💪

 

STOP COMPLAINING ABOUT YOUR LIFE

I met a young girl with a disability.  I found out her mom couldn't handle it,  so she has a new mom now.

I met a boy at Shriners and he seemed kinda down. My friend told me that last year him and his friends were just hanging out,  leaning up against some rocks and one of the boulders came loose and fell on top of him. His friends dragged him out but he now lives in a wheelchair.

Yesterday,  I helped feed a beautiful girl some food because she can't.  (Amazing girl)

What if this never happened to Taylor?

Do you know before Taylor got hurt I was so busy working that I wasn't living life. I was ignorant to see the world. To see people with disabilities. To see people in wheelchairs. To be able to feel for the parents.  To help feed someone who can't feed herself.

There is no way that you can understand what someone else is going through until you are going through something yourself. You have never truly lived until you've helped someone else in this world.

Stop complaining about your life if you have 2 arms., 2 legs,  and your health.

I would never wish this to happen to us but it has opened up my eyes and let me experience life in a whole new way and for that I am truly grateful. My heart is full!


Think your life sucks? Go visit a children's hospital and see them smile.


(If you know someone in your life who is constantly complaining share this message with them and hopefully it will start opening up their eyes. )


#grateful #changes #support #caregiver #singlemomlife #legacy #life #Taylorstrong #trustyourgut #nevergiveup #spinalcordinjury #findthegift #beagift