Here is what Adam has been up to since the last post in January. It’s been busy and it’s probably going to get busier. Since the rehab facilities deemed Adam “chronically ill” he does not qualify for rehab services as an inpatient. Apparently insurances only want to pay for the acute cases aka “easy fixes”. So I am doing everything within my power to get him services that will facilitate his recovery as out patient. Which has its challenges. I use the word recovery because Adam is recovering from the two brain surgeries and multiple seizure meds. It’s been slow and doctors gave him two years to fully recover. That two years has came and went but I refuse to give up. How dare doctors give God a time frame. As for Adam’s near future he just started Home Schooling. A teacher comes to the home to work one on one with him until he is prepared to transition to a full day than a full week. He also getsVision Therapy, Physical Therapy soon after that Occupational Therapy will follow, he also has been playing Basketball and Baseball with the help of his big brother Frankie and League of Dreams. We are on our way to discontinuing another seizure medication. We will ween another dose of medication in December. It’s been a lot of work for Adam and for all of us who love and care so closely for him. Each time I become weary I just repeat “I can do all things through Christ who strengthens me” and than drink a big cup of coffee 😉
Adam Turned 6 years old
This is the Upsee its a harness made by Firefly Company. I LOVE IT!
CHECK IT OUT Online
This is Adam in 2013 and Adam in 2015
The progress is slow but its worth the wait.
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.
WE MADE IT TO D-land!!
It was a dream come true!
There were days when the thought of Adam at Disneyland was something I’d picture in mind just to get through a horrible day. (You know, kind of like how I refer to Hawaii).
Than I thought of it as a far out of reach goal. One day out of the blue I whispered under my breath,
“God, if this Your Will please make it happen. If this is meant to be help us because I do not see a way.”
Let me say He did it!
By an “unexpected gift” of 5 Disneyland tickets! Adam’s nurse was able to go and our hotels conjoined so when her shift was over she just went next door and when morning came I carried Adam to her room as we packed an prepped.
Some may ask how i know it was God’s. I know it was GOD’s plan because of this: the day we went to DisneyLand was the same day they celebrate Epilepsy Awareness Day!
We had NO IDEA UNTIL WE ARRIVED and saw the hundreds of people wearing purple epilepsy awareness shirts and they had Mickey on the front.
God knows the details of our heart’s desire.
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
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
Will wear RX glasses
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.
First, I need to thank everyone who has prayed and offered their support to our family in anyway. The past five years we’ve been through ALOT and YOU have helped us through. Thanks to all the prayer warriors out there!
Keep it up!
After everything Adam has been through HE STILL SMILES. Truly there has never been a smile that shines so bright! To know Adam is to fall head over hills in love. It’s a special kind of love. One that he exudes generously to all who BELIEVE. It’s God’s love as innocent and pure as it could get, its direct from Heaven.
I’m his mom-so blessed. I wish him a happy birthday so grand even his little Deaf ears hear it. I wish him/ pray him more hours alert, more purposeful movement, more play and a stronger immune system to protect him on more family outings. None of these things money can buy. None of these can be put in a box and gift wrapped but just imagine when they come true! Imagine how good Adam will look doing them!
Yesterday we took Adam to church and held a special mass to give thanks for all he has overcome. Family and friends gathered and prayed and after we went home to have cake and icecream, including Adam. He had a wonderful time. Thanks Be to God.
So much fun is happening around here! FINALLY!!!! We are continuing to reduce seizure meds on Adam. It’s been a long year and FINALLY Adam is slowly showing consistent, positive responses.
He is more attentive, his eyes are wide awake and smiles/ smirks more often, he is re-learning about peek-a-boo and patty-cake and bubbles.
He has a new dog named Mia. Mia loves to be by Adam mostly when he takes her cruising in his wheelchair.
Adam has gone HORSEBACK RIDING!
Yes! See picture to prove it!
He started horse riding therapy.
His first time was last Tuesday.
Watching Adam ride away on the horse (of course with therapists all around him) was one of the highlights of my life. I felt like I was letting him ride off into the sunset, to land of pure happiness. As I stood there I realized this precious moment in life had taken my breath away and I could only whisper, “GO ADAM GO” as tears of pure blissful joy skipped merrily down my cheeks. It was the BEST PLACE THIS CHILD HAS EVER BEEN. Can’t wait to go back.
He lost a tooth!! A TOTAL SURPRISE!
Thank goodness the nurse was with him and calmly went fishing for the missing tooth. I would have freaked!
Let see… What else…
Oh. The park. Adam also went to the park with his big brother Frankie.
Adam is truly turning a corner.
Each day I’M SO SO THANKFUL TO GOD. Words don’t describe. He is making a comeback… More and more this Adam resembles “old-Adam”, “healthier-Adam”. I’m realizing that he never left…. Adam’s personality NEVER left. It NEVER changed. It was/is there for the unveiling. I am more hopeful and more determined.
LETS DO THIS ADAM!!!
March 30, 2005 our first son was born;
March 30, 2012 our second son had his first of two brain surgeries.
I’ve been really busy preparing for Mr. FSW 9th birthday. I enjoy the creative aspect of party planning but not the time restraints. He’s such a good boy and he’s a great big brother. He deserves an entire day of everyone’s attention. For once its all about him…
Than why? Of all the 364 other days in a year did Adams surgery also occur on his birthday.
It’s a reminder two years ago was Adams surgery. Incase you don’t know: traumatic brain injuries such as his are given a time limitation of two years as a “new baseline.” They told me whatever he is like at two years after surgery is what he will probably remain at… Doctors said he functions at a 6week old child’s ability level… I disagree.
So on this weekend I will be reflecting on the growth of my two boys and the significance of March 30, to our lives. I will certainly be counting my blessings and looking closer at what I think really matters.
OPTIMISM, HOPE, FAITH and LOVE. NOT TIME.