Sharing stories of fear, frustration, hope and acceptance

Archive for the ‘helpful tip or idea included’ Category

Upsee, Upsee and Away!!

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This is the Upsee its a harness made by Firefly Company. I LOVE IT!
CHECK IT OUT Online

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This is Adam in 2013 and Adam in 2015
The progress is slow but its worth the wait.

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This is US LATELY.
(One of my favorite pictures)
Adam will be playing Baseball in Spring with League Of Dreams. Frankie will be his “Angel”.
An “Angel” with League of dreams means Frankie will assist Adam during the baseball game.

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MMJ Patient #batman

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I just watched Culture High,
A documentary film about legalization of Marijuana. This movie was a compelling
movie filled w truths about pros and cons to ending marijuana prohibition. Government does not want that. The documentary can tell u why.

Either way, our dear friend Jason David and his son Jayden both are in the documentary movie, also starring Snoop Dog, Joe Rogan and a few brilliant scientists (forgot their names ) sorry. Jason and Jayden helped save Adam’s life. They guided us out a dark scary time regarding Adam’s health.

In Sept 2012
I contacted Jason David.
The Davids shared their journey about mmj Info and how CBD had helped reduce or stop seizures Jayden’s seizures. He answered questions like: How to apply for a “caregivers” license. How to do this in a safe manner? He also offered MUCH NEEDED hope and encouragement.

in Dec. 2012 Adam was an official MMJ Patient. He had his first dose of CBD butter. He was on 44 seizures pills in one day, he could not breath on his own. Lets just say he was close to death. He went into respiratory failure too many times. He couldn’t move or smile. It was an extremely scary time. It was a difficult reality to face: Adam had two sections of his brain cut out, he had a breathing tube, feeding tube, a shunt in his head and HE STILL SEIZED! The CBD helped reduce the seizures.

WE HAD NOTHING TO LOSE SO fast forward to NOVEMBER 2014
Adam is still an MMJ patient but
now can:
Play baskeball (w assistance of course)
Eat by mouth- purred food
Breath on his own
He is down to 12 seizure pills a day
He holds his head, moves it side to side
Smiles
Will wear RX glasses
More alert
All this because of our ability to access safely MMJ.
IT TRULEY IS THE DIFFERENCE BETWEEN LIFE AND DEATH! Politicians and negative opinions should have ZERO say so about how I ensure my child’s medical well being. If I would not have chosen to look out side the box, or listened to doctors and gave up Adam would be dead right now. It was not ever a decision we took lightly.

This medicine has saved my sons life! Please don’t judge those other parents for finding hope in this important medicinal plant.
And for those who have and will offer support..
We love u.

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Victory! For “Professor Moms”

What is a PROFESSOR MOM you might ask. Well she falls under the same category as WARRIOR MOM…
She will do anything AND everything within her power to get the attention that she feels her child deserves. Whether it’s attention of teachers, therapists, or neurologist with PhD. Whatever or whoever they are DOES NOT MATTER…
Despite any insecurities or fears if it’s something for her child, SHE WILL GET IT DONE. In my case it was another day in the ICU and the neurologist had suggested that Adam may have Encephalitis (infection in the brain). After he muttered that word I found that I was at a loss for questions. Usually me and black book are ready to aim and fire- not this time. So I let it soak in, I asked the RN for a print out on Encephalitis. My sister came over to the hospital and we googled the latest research on this diagnosis. By the end of the night me, my sis and my notebook were exhausted with questions. After a good nights rest at a hotel -thanks to my sis. I headed back to the hospital.
Doctors are always in a hurry and I noticed that you have to be creative at how you go about, not only getting their attention but keeping it. As a joke my sister mentioned that there was a white board AND a marker. It was her idea to write my notes on the white board. At first I hesitated, could I be so bold so brave? These are Neurologist! These are world known high to-do doctors. Then I looked at Adam. What if anything I had to say, even if it was just one word, would spark an idea or connection for them that could help him. It took me one second after that thought and I DID IT!
I wrote each of the concerns or diagnosis doctors had mentioned about Adam and I listed my questions and my concerns. It was an outline with symptoms and all. To my surprise
when the doctors came in guess what?
As soon as they saw the board I had their attention! I went through my
mini-presentation, presented my reasons and findings and my questions and concerns all of it! After I finished they said, “we are actually considering that, good job mom. You did your homework. We should hire you.”
I don’t know if they thought I was crazy or if they were just humoring me but either way I got my voice heard. It didn’t matter if they had already thought of it. After they left my sister and I laughed hysterically because we could not believe what I just did. To me it was a great victory for moms every where! It was victory for every mom that has dealt with a busy doctor too in hurry to let her finish her sentence. It was a victory for mothers who have dealt with doctors that use their lingo like clue words we have to catch on to.
So to all mothers I share this tip: grab your smartest friend, or family member, don’t be afraid to list what the doctors say such as big words, scary words, write them down Google them.
Do not ever say you googled- say you did “some reading”.
If you need an answer to your question repeated, say, “I may have asked this before but ( ask your question again). Or say at the end of your conversation, ” I just want to make sure I understood what you said” and give them a short version of what you remember. Do not be afraid to say if you do not understand something, or ask them “could you repeat that.?”

Here’s to Professor Moms every where!

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Get What You Want From Your Doctor

As Adam’s advocate I have found that the one secret to getting the resources he needs depends on the vocabulary or terminology I use.
So here’s a tip for parents.
Find someone or go online to help you learn the terminology they are likely to use. Before going to any important appointment or doctor consult have a list of terminology prepared or memorized. If you hear a word used repeatedly write it down, look it up. So that when you talk to this person or team again you will seem more informed and be taken more seriously therefore increasing the chances of getting what you want from the meeting or encounter.

For Example, Adam has epilepsy, he has been hospitalized for two weeks.
During this stay I learned that:
twitch, spasm and jerking are each used differently.
Jerking is the most visible, forceful movement. This can be seen in Grand Mal Seizures.
Spasm is a less aggressive movement and is a little slower (still repeatedly). Twitch is quick tiny movements.
I also learned that the term “rhythmic” is code word for sure sign of seizure (at least for this neurologist). So to explain a movement that you believe may be a seizure describe the area, the style of movement and the duration.

You could say for example, I saw _____’s left arm start twitching at 9:30. It turned into a (heres the helpful terminology) more rhythmic pattern and eventually a jerking movement. This went on for ___mins.

Side note: here is more seizure vocabulary

Clinical Seizures: May be used to describe VISIBLE seizures/ symptoms.

Sub-clinical: seizures that occur in the brain and DO NOT show visible body movement.

Status: status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 5 minutes,[1] or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes. It is always considered a medical emergency.

Postitcal State: the resting stage that follows the seizure. The person is extremely exhausted and requires rest.

It’s sad that hospitals and doctors function this way, I worry for parents who may not have the ability to advocate for their children in such ways. If you have any tips or suggestions please feel free to comment.

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“ASL Cheat Sheet”

While being in the hospital with Adam I realized how little medical professionals know about dealing with Deaf/HH children. Yesterdays nurse was kind enough to ask me how to sign sorry.
In the past my mother in-law went to a website and found pictures of how to sign doctor, nurse, sorry, hurt, eat, and medicine and she created something I call the “ASL-CHEAT SHEET.” I tried to choose the five or six most used. http://www.lifeprint.com/
The last two-times Adam was admitted here I provided the nurses with this sheet, I asked them to place it somewhere in the RN area so they could refer to it when Adam returned or if any other Deaf children are admitted. That didn’t work obviously. So now I figured out it will be better to tape the “CHEAT SHEET”- right next to his bed. I will also tape a notice above his bed that says,

“PLEASE use facial expression or ASL to communicate with Adam.”

I’m still trying to perfect that statement. I wanted to put “please use facial expressions, ASL or gestures to…” but a-lot of people think gestures and signs are the same thing and don’t even try or ask.
As a result I find myself in a position of public-educator. Even if the sheet is presented in it’s simplest form if the person/RN or even family member is without genuine interest in communicating with Adam the cheat sheet gets over looked. This is so frustrating!
Side note: gestures are used in ASL for words that don’t have a sign. Although just as important as official signs, I think of gestures as a generic sign. Gestures are also used with signs to add further detail to the concept you want to convey. Before Adam was diagnosed we knew he was Deaf and I would make up signs aka gestures to communicate.

This is all still new to me and I’m trying to maintain balance between patience and initiative….advocate and mother…. Any tips?

Photo finger-spells:
Can You Sign Your Name?

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