Welcome to our journey with Pediatric Stroke (and a few other challenges)! Our hope is that by posting our experiences, we might be able to help you in your own journey. We have certainly benefited from hearing the stories of others!
Diagnosis, Testing, and Our Journey (clickable):
- Our Pediatric Stroke Journey Begins
- Grief, Anger, and Despair – Surviving the First Few Years
- Blood Tests in Children – How to Prepare
- The Future: What Lies Beyond?
- Donating Used AFO’s, Splints, and Medical Supplies
Pediatric Stroke Therapy (clickable):
- CIMT – Constraint-Induced Movement Therapy
- Affected Side Activity Ideas – Home Therapy (PT/OT)
- McKies, AFOs, and Theratogs, oh, my! – Our Orthoses Age 0-4
- Our Dynamic Movement Orthoses (DMO) Experience – Age 4
- Our Orthoses and Therapies Age 4-5
- Entering the School Years: Our Orthoses and Therapies – Age 5-8
- Bilateral Walking Casts – Achilles (Heel Cord) Stretch
- Massage Therapy and Chiropractic Adjustments for Hemiplegic Cerebral Palsy
- ABM – Anat Baniel Method
- MNRI – Masgutova Neurosensorimotor Reflex Integration
Hemiplegia Medical Issues (clickable):
- Sleep Challenges – Delayed Sleep Onset, Frequent Wakings, Insomnia
- Post-Stroke Bladder & Bowel Tone – Constipation, UTIs, and Potty Learning
- Taming the Temper – Social and Emotional Struggles
- Academic Challenges – Homeschooling Our Stroke Survivor
Unrelated Medical Issues (clickable):
- ECC – Early Childhood Caries (Cavities) – Our Experience
- Food Allergies – Dairy, Egg, Soy – and FPIES – Our Experience
- Childhood Obesity – Our Experience
- Constitutional Growth Delay / Idiopathic Short Stature – Our Experience
- Recurrent Clostridium Difficile
- Overflow Incontinence and Neurogenic Bladder
- Adult Braces Journey
Spiritual Journey (clickable):
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
- Dr. Karen Pape – a Pediatric Neurologist based in Toronto, Canada. To read her blog is highly inspiring, to say the least!
The first “old fact” that must be dispelled is the often stated opinion that baby brain injury is permanent and irreversible. The skeptics who cling to the way things have always been will ask, “What proof is there that a child’s brain can recover from brain injury?” You will not find any claims of cure in the cerebral palsy literature. However, if you look outside the narrow focus of cerebral palsy treatment centers, there is ample evidence of both recovery from and cure of early brain damage. Roughly 30% of babies with a documented abnormality on an early brain scan have a full functional recovery. Yet, in spite of this knowledge, that is common to all the professionals in the NICU, parents are still told that there is no hope of a cure and cerebral palsy can at best be somewhat improved with therapy. Human neuroplasticity offers the real hope that all baby brains have the potential for recovery and some children can be cured.
4. The 9 Essentials of the neuromovement approach of the Anat Baniel Method (ABM). How to encourage neuroplasticity!
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Maybe all your life has been leading to this one moment: The Bridge to God.
…we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. Romans 5:3-5
“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)
Verse 3 here talks about this beautiful side of God. He’s the God of all comfort. He’s the God of compassion; the healing hugs of God, who brings what only He can bring us; a supernatural comfort deep inside of us where no human being can go. I hope you’ve experienced that.
There’s a comfort cycle here. It says that we’re supposed to comfort with the comfort we got from Him. This word comforting is really the Greek word that means “called alongside of to help.” It’s saying God comes alongside to encourage us so that we then can do that for others. The comfort isn’t just for us to get comfortable. It’s to fill us up with love and support that we pass on to others.
How does this happen? Well, you go through a deep valley. Maybe you lose someone, you have a season alone, some lingering illness, maybe a financial disaster, or you’re abandoned, you’re betrayed, and it hurts. But God does something beautiful with that hurt. He turns it into sensitivity; into radar for people who are hurting in that same area.
When life’s trouble hits you, it can be a tool either for Satan or for God. You dwell on the pain, you dwell on the people who hurt you or on yourself, and you’re going to start a downward cycle of depression. That might be where you are right now.
But if you surrender to Jesus all the pain, all those people who hurt you, all the questions, you’re on your way to turning a loss into a victory.
It might be that you’re going through so many of life’s troubles, so much of life’s pain without the Great Comforter, without the God of all compassion because you don’t have a relationship with Him. You might have a religion, but you don’t know Him personally.
I tell you that Jesus came here to walk the most painful road anyone has ever walked, to die on a brutal cross to pay for the sin that keeps us from God, so the wall could come down between you and Him this very day. And all His resources are yours to walk through the pain and the storm. Our website will show you how to get started with Him – AnewStory.com. (Source)