Quite some time has passed since my last post and much life has been lived in the gap. The reality is, life is so full I don’t often make the time to write formally here, even though it really does bless me to do so.
See the last grouping of posts were written either during the dysfunction or during the resting portion of recovery from surgery. The truth is that we’ve been up to our eyeballs fighting our way back.
Garrett underwent spinal cord de-tethering surgery on 6/20/15. Someday, I will write that day’s post, I promise. One thing’s for sure when you’re headed into a surgery like that, after witnessing your child live in pain, you’re ready to truly surrender the whole thing. It has long ceased to be about you and what you want, what dreamed for your child’s future and definitely not about easing your pain and exhaustion. You’ve reached the end of your rope and there’s nothing left for you to do. You enter into the moment willing to accept whatever outcome, you just hope and pray the pain will be gone.
Our neurosurgeon asked us to proclaim our medical priorities for Garrett and it was pretty easy to say 1. organ health, 2. Pain-free 3. Mobility. He indicated that exactly what I suspected was going on was, stress on the spinal cord due to tethering and scar tissue, and that this surgery would be the only way to medically treat Garrett.
Like I said earlier, since surgery we’ve been working hard to heal and come back strong. Garrett’s been working hard with a really great physical therapist and he was making great progress! Just a few weeks ago, it looked like he might even get released from PT early. Then things started going the other way. Garrett started regressing. His balance got worse, his legs were weaker, and he fatigue began hitting him sooner. The PT and I both had the scary thoughts cross our minds, but we also knew that Garrett was experiencing a growth spurt and hoped that was the cause. The PT ran Garrett through a lot of assessments of strength, flexibility, balance, and reflexes and recorded the results. The next week he did the same and in addition to marked changes in the results, there were stronger indications of neurologic stress/dysfunction. In one look across the room, he communicated everything and I struggled to hold it together.
Again we’re in the space of the unknown. We suspect there’s something going on with his spinal cord again.
We cut the appointment short so that we could both call the neurosurgeon and request Garrett be seen as quickly as possible.
That was 10/12/15. The soonest they could get us in was 10/28/15 and they added us to the list of to call if there is a cancellation. They instructed us, of course, to go to urgent care or the ER if symptoms became severe and unmanageable.
We haven’t said much to many people, we’ve been processing and coming to terms with it. I just told my siblings yesterday.
Over the last week, there’s been an even greater decline. He’s using a walker around the house, and a wheelchair when we’re out and about. However, being on his feet at all is becoming increasingly painful and unsafe.
We share this all now because the weight of it is getting heavy and we remember well how so many around us shared the burden with us last time. We would appreciate your prayers to help lift us up and carry us through again.