Wednesday, March 27, 2013

Educate and Advocate

My partner and I started a organization. called Hope's Seed. Hope's Seed was founded in February 2013, to meet the needs of parents of special needs kids by focusing on local, face to face support and care.

Hope's Seed plants a seed of hope in parents by telling them "You're not alone!"  We all know what it is like to experience difficulty on the journey of raising our children with special needs, and so we created this organization to support and encourage each other, and to offer hope.

Each month Emily and I come up with a topic to talk about this month (March) we are talking about advocacy. Here was one of my post.

Please like us on Facebook and help show other parents of special needs that they are not alone.

Sometimes, advocating for your child can be difficult.  Standing up to a doctor and telling him or her how to care for your treasure can feel intimidating.

Many times I still feel intimidated when I speak my mind. Lots of things go through my head, like maybe I am wrong- after all they are the doctors they should know what they’re doing. I have come to the understanding that many times doctors have no idea how to handle our children and so they are just winging it.

In the last post we talked about how gut instinct mixed with knowledge is your biggest weapon. One of our parents who has a child on a ventilator felt that he was on the wrong ventilator.  Her gut was telling her so; however, she read up and asked other parents with children with the same diagnosis as her child. She took a deep breath and went and told the doctors she wanted her child on another ventilator. You know what?  She was right!! Her child improved quickly and drastically.

Standing up to the white coats (aka doctors) is hard, especially if you are questioning yourself.  However, remember that the doctors are working for you (you are giving them a paycheck every time they walk into your room), and there is a reason they say they are practicing medicine and they do not say they have mastered medicine.

Think of it like this: your child is your business and you are the CEO of the business, and the doctors are paid contractors. They cannot do anything to your child without your consent.  In fact, you can choose to move your child to another hospital if you do not feel that your child is being properly cared for.
Here are some key points:
Your Doctor does not know everything.
You are the leader of the team that is taking care of you child.
What you say carries more weight than what the doctors say.
Gut instinct and knowledge are the keys to caring for your child successfully.
Take a deep breath.  Know that you are right; tell the doctors what you want and do not back down

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Sunday, March 24, 2013

Abram's Story of Transverse myelitis

I first met Jen because my cousin's baby developed Transverse myelitis. I was they only person in my family who knew how to navigate this new world of Special Needs so I began teaching my cousin what to do. I spent hours looking up and researching Transverse myelitis, I also began to look for mom's of children with TM (Transverse myelitis). I ran across Abram's picture and contacted Jen I asked her a ton of questions and have been the middle man (or should I say woman) between Jen and my cousin every since. Jen is a wealth of knowledge about TM and how to advocate for your child. Here is a story of a normal little life turned upside down, and yet made whole and happy


 When the topic of children came up between my husband and I, it was never a discussion on having them, that was certain. It was how many we were going to have. See I wanted 4 and he wanted to have 2. So we came to an agreement that 2 was enough and if the Lord blessed us with more then so be it.

I always joke that Abram is my second and third child. I got all his firsts twice. I got to watch him gain control over his tiny body, roll over, sit up, etc. All the firsts that parents look forward to, I got to see twice with my son.

I had a very normal pregnancy and birth with A. Nothing abnormal at all. He wasn't ever sickly, grew just like he was suppose to. He crawled at 4 months and by 7 months he was walking. I breastfed him and since I work full time he slept with us. Around 8 months old we (mostly I) decided that it was time for him to sleep in his crib and sleep through the night too. We used the same routine with A that we used with our Gen. My husband started getting up with A because he didn't equate Daddy with food. Things were going great and Mommy was sleeping though the night!

7 am December 3, 2009 our lives changed forever. You know the feeling you get when your baby sleeps though the night for the first time. You wake up, it's light out and your like OMGosh! Then you have this debate with yourself about why you slept though the night. Then you wake your hubby to go check the baby. The words you never want to hear were spoke that morning “Oh God, Jennie you gotta get your car. He's not moving.”

I rushed to the ER and by rushed I mean I turned a 45 minute drive into about 20. Then we waited... Our town is small and our hospital is small. The closest children's hospital is 110 miles away and we couldn't get an ambulance to come get us. We decided to drive him ourselves. The hospital was kind enough to keep my car seat, we folded the seats down in my SUV and laid him strapped to a board in the back of the car, hung his IV bag from the coat hook and we were off. It was the longest drive of my life!  

At 9 pm on the 3rd after 4 hours of MRI and X-rays Abram was diagnosed with Acute Idiopathic Transverse Myelitis with lesions from C2 to T4. We spent 18 days in the children's hospital, 7 in PICU waiting, watching and wondering why he was still breathing. Then 11 days in Oncology. He gained 12 lbs from the steroids and possibly because all we did was nurse... We did 7 treatments of Plasmapheresis and still nothing.

He is completely paralyzed from the neck down. Couldn't make sounds couldn't move, nothing. Next came the hardest decision I will probably ever have to make in my live. They wanted to give my baby chemo. They handed me 2 pages of side effects and told me to let them know in the morning. I've never cried so hard in my life. I didn't tell a soul. The next morning the Dr's came in and took my baby away to hook him up to machines could change his life in so many ways and some of them real bad. We left the hospital 18 days later with a 5% chance of him ever walking or talking again. It was like having a 28 lb newborn all over again.

Abram turns 4 this week and though life has been a roller coaster for us he is amazing. In the 3 years since being diagnosed with TM he has regained all movement in his body although he can't feel anything on his right side and little on his left. The last MRI showed permanent spinal cord damage at C4 and T2 with continued swelling between the two points. He has days where he has to be on O2 because his muscles aren't strong enough to breath well if he is tired or sick.

 He has a wheelchair for distances or when it's to dangerous for him to walk. We live life to the fullest every minute we can. We camp, I carry him in a hiking pack so he doesn't miss out on hiking, rides ATV's and LOVES trucks! Sure life has changed for us, I mean who ever thought I would have a Urologist, Neurologist and PM&R Specialist on my speed dial! 
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