Female, 24 yrs
Adrian has had many challenges in her life from birth. She was overdue and in the 2 weeks between 40 and 42, fluid built up which damaged her brain. The next day, they put in a shunt and we’ve lived life as it comes ever since. 11 consequent diagnosis, countless surgeries, hospitalizations, procedures, highs and lows later, we thought we’d somewhat plataed, like this is our new norm, we got this. I was incorrect. What started in 2016 with regression then neurosurgery for a new shunt valve, then enlarged ventricles, back and forth, back an forth, searching for anything to help her, it turns out Adrian has suffered a massive stroke in her brain the early part of this year. Another one will kill her and there isn’t any surgical intervention that would benefit her at this point. Atrophy has begun to set in and whether this is the beginning of the end the surgeon doesn’t know because he’s not God. That was hard to hear.It was also a game changer for myself. One person can only endure so much and I decided anything I don’t have to, I am not. No negativity, only genuine people allowed who don’t want anything from me but me because I don’t have anything else to give. I made a lot of tough choices that I feel were necessary for Adrian and myself and for our happiness. .Straight up or not at all, no exceptions. Not even for family because with all the things I got to cry about, no one is worth crying over because the ones who are wouldn’t make you cry. Maybe they’ll work that out but I got to keep it moving for my child. We want our circle filled with people who truly are happy for each other and help each other out and hang out and eat good food, which I’ll be cooking btw, and listen to good music because at the end of the day, everyone has stuff to deal with, no matter what it is. If you have good people around you, you can get through anything.It’s in God’s hands now, but she’s good, she’s happy, and whatever comes our way, we’ll get through together with a new outlook, refreshed soul, and a real smile.
Adrian loves music and joking around. She knows all the songs ever made somehow and feels music so deeply it’s emotional for her. “Put tunes on” is her favorite thing to do and is a requirement at our house pretty much all the time. She got that honestly, as music is a very necessary part of my life as well. She likes hanging out and peac. She hates hassles and she knows when I’m upset so she protects me and makes me laugh. She tells me to “relax man” like she knows we’re going to be alright and to “lean back” while we ride this out.
Adrian needs a case and a powerbank for her iPad, she’s rough on them. She broke her current case, Thank God it did it’s job!, and the charger port is already acting up because she yanks it, so I think wireless will help. A new tv, her’s finally died after 10 years. The tactile metronome she needs to be able to feel the beat in hopes of the brain associating sound and vision pathways to prevent further regression and atrophy. After the stroke, we’re told by the surgeon that she has to use it or lose it and she loves music so much.These are the items I found on Amazon:
Case-iPad 6th Generation Cases, iPad 9.7 Case For Kids, [Shockproof] Ambison Full Body Protective Case with Pencil Holder, Tempered Glass Screen Protector, Rotatable Kickstand & Hand Strap (Orange & Black)
Powerbank-Techsmarter Wireless Charger with 30W USB C Power Delivery Port and 18W TS+ Fast Charge Ports. Compatible with Samsung S7 S8 S9 S10 Note 8 9, iPhone 8 X XR XS, Ipad, MacBook
TV-TCL 43S425 43 Inch 4K Ultra HD Smart Roku LED TV (2018) **And that’s only because it was a great deal for $144.49**
Metronome-Peterson Metronome (BPS1)Peterson Body Beat Pulse Solo
Adrian loves music. The spero ring specdrums are for anyone with any ability to make music just by taping on things. There is an app that is more in depth but this is right up her alley because she’s always drumming on me.The echo sub is again for feel, the deep sounds she hears, as well as alexa voice activation. Talkitt is about to launch a voice recognition system for “non verbal” and people with speech impediments and we already have a few alexa items and I see how they can really help her be as independent as possible; lights, safety, recreation, choices. I found her tapping on the tv screen for Alexa to wake up so she gets it. The light up gloves are fun and I think they would be good for visual tracking with her CVI. I also thought it may be helpful at night for us to see each other like from the car to the house or when she walks with Grandpa when he visits. In the dark, she has no usable vision to speak of without extreme contrast.This is what I found on Amazon:
Sphero 2 Ring Specdrums: Turn Color Into Music, Included Play Pad, Steam Activities, Create Sounds, Loops, Beats for Musicians of Any Skill Level, Midi Support, Connects to Garageband & Ableton
HITOP Led Gloves Light Up Kids Toys Boys Girls for Age 5 6 7 8 9 10 with Extra Batteries( 2 Pair)