This week was our first week back in physical therapy in quite some time. His therapist said that she can see so much continual improvement even with the break in therapy that we can assess whether we want to just keep living life how we are and let that be his "therapy". That is a great conversation to get to have.
For reference, here are some one year ago vs. now comparisons:
Aug 2019: walking about 10 feet with full reliance on a walker and a wheel chair the rest of the time
Aug 2020: walked about 4 miles a day on our trip without using a wheel chair at all. Also did P90X3 modified version for the full 30 minutes.
Aug 2019: struggled to feed himself both with hand coordination and chewing ability
Aug 2020: hold his fork oddly but has no issues eating ALL DAY LONG
Aug 2019: weighed 58 lbs
Aug 2020: weighs 69 lbs
Aug 2019: needs at least one nap a day and 13-14 hours of sleep a night
Aug 2020: sleeps 8:30pm-7:30am every day. No naps needed except in rare instances.
It has been a pretty amazing year for that kid. We pray for continued healing of his brain and muscles, for continued strength, and for seizures to end forever. But today I can honestly say that I am so happy and thankful for our life that if God never changes anything, we are going to be ok. What a miracle to be able to say that.
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I'm sorry for the lack of updates. We've been busy living. You just never know how much living you're going to get to do these days. I'll try to post a more thorough update soon. For now...
The deck was stacked against this day. To say that this day was not supposed to happen is not an understatement. No, this day should not be happening. Not according to diagnosis. Not according to prognosis. Even as we joyfully walked out of the hospital last August, we knew that we (and you) were praying into the face of overwhelming odds. Those odds told us that we were destined to spend every moment of every day and night on edge until Isaiah’s next major seizure came—at which point we would likely begin a repeat of our induced-coma nightmare…and it would likely end in loss rather than relief.
But, God was gracious to us. Isaiah survived his first major post-hospital seizure. He came out of it just as strong and smiley as before. As expected, the seizures continued coming (over the course of 2020, he's come out of over 60 seizures), and Isaiah continues to power through them on the wings of prayer and his unshakably positive attitude. We simply could not be more proud of him.
All that to say this…
Today is Isaiah’s birthday. Our wonderful warrior of a boy turned 13 years old today. He wasn't supposed to survive to 12, and yet we were given 13. Grateful doesn't begin to describe it. We aren't deserving of this boy, his smile, his strength, his joy, or his attitude. But, God has given us 13 years with him. We praise God for that.