It's raining miracles...
And we've witnessed a miracle I feared I may never see...
JAYSON IS WALKING!!!
And WALKING is just ONE of the many miracles we have been witnessing since Jayson's Posterior Vault Distraction surgery!
This was a Facebook Post I made at the beginning of December:
And we've witnessed a miracle I feared I may never see...
JAYSON IS WALKING!!!
And WALKING is just ONE of the many miracles we have been witnessing since Jayson's Posterior Vault Distraction surgery!
This was a Facebook Post I made at the beginning of December:
Since Jayson's Cranio surgery and his head sized
has increased 3 1/2 cm...
He is
walking everywhere, all day long, and doesn't seem to have the balance issues
he had before
He has learned 4 new signs in 4 weeks- iPad, eat, sleep, movie
He is trying to communicate with us often, using signs, sounds and body language
He is often responding to his name -He is following a few simple, directions and never has before
He is sleeping through the night without a problem, and isn't overly exhausted during the day
He overall looks and feels better -Some of his new eye movements have decreased
He is NOT rubbing his face and head on a daily basis and crying
He is NOT putting his head on the floor and standing, putting immense pressure on his head
He is NOT rubbing his head on numerous surfaces, especially the carpet
He is NOT pushing his head against people and objects trying to relieve pain
He is NOT randomly crying in the middle of a activity without a real known cause
He is NOT rubbing his face and head all throughout his sleep like he has been for the past few months
He has NOT had any identifiable migraines or headaches, which were becoming a new "norm" for us
He has learned 4 new signs in 4 weeks- iPad, eat, sleep, movie
He is trying to communicate with us often, using signs, sounds and body language
He is often responding to his name -He is following a few simple, directions and never has before
He is sleeping through the night without a problem, and isn't overly exhausted during the day
He overall looks and feels better -Some of his new eye movements have decreased
He is NOT rubbing his face and head on a daily basis and crying
He is NOT putting his head on the floor and standing, putting immense pressure on his head
He is NOT rubbing his head on numerous surfaces, especially the carpet
He is NOT pushing his head against people and objects trying to relieve pain
He is NOT randomly crying in the middle of a activity without a real known cause
He is NOT rubbing his face and head all throughout his sleep like he has been for the past few months
He has NOT had any identifiable migraines or headaches, which were becoming a new "norm" for us
As you can see, this Posterior Vault Distraction
surgery has brought much relief for Jayson and much hope for our family. While
our hearts are very grateful, we are still going through a process of anger
that our son has been suffering for MONTHS and our concerns were not heard.
Although I pushed, asked, and even unleashed crazy mama bear, I still feel
guilty that I didn't do more. Jayson has needed this surgery for a very long
time. My poor baby suffered for months, if not years, and he now has permanent
brain damage, which is likely a result of his long term intracranial pressure.
I really hope my heart can find peace over time, and I can just sit back and
watch my miracle boy grow and progress, but right now I'm a victim of guilt,
anger, and regret. Your continued support, prayers, encouragement and kindness
is so very much appreciated! We are hoping that now the distractor rods are
removed and we are done with daily torture and adjusting his skull that our
family can relax and enjoy this beautiful season with our miracle boy. Much
love to you all
Since that Facebook post was made, Jayson has progressed even more!
He has started to put a couple of things ON and IN after years of therapy; he typically has only taken things off or out
He holds your hand out of love, or also grabs it to try and help show you what he wants
He has started pushing the switch wired onto his Power Wheels car to make it go himself
He is playing some more advanced games on his iPad and truly understanding some more cause and effect, matching, etc.
He comes to you when you tell him to come here (dependent on if he feels like listening haha)
He hugs and cuddles family members when they visit
When you say, "It's time to change your bum" he knows that that means... and cries because it hurts him right now
When you say, "Let's put your (socks or shoes) on" he lifts up each foot one at a time
When he's hungry he goes to his high chair, pats it and tries to climb up
He fills up a little cup with water (in bathtub or tupperware container) and brings the cup to his mouth and drinks several gulps!!
He sees something he wants and walks to it or fusses/whines trying to communicate what it is that he wants
It seems like there is a new little miracle every
day. Each day seems to be filled with hope and possibility. We are
so blessed that this condition was discovered, that it was operable, and that
Jayson has an opportunity to live a life without excruciating pain and pressure
on his brain. We know there are some hurdles Jayson may never overcome,
but we are so grateful for how far he's come and even more hopeful for his
future!
Check out some footage of even more of his miracles!!
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