For most of you reading this, you'll understand what I mean when I use the phrase black ice.
Have you ever been travelling down the road, most likely in the winter time, behind the wheel of your automobile, paying close attention to the weather conditions but for the most part the air is clear, no snow flakes at all to be seen. The road itself looks bare, no snow build up just bare pavement. So you continue to tour along at pretty good speed cause you've got places to go and people to see. Then something happens that makes you have to slow down in a hurry. Could be an animal jumps in front of you, the vehicle in front makes a sudden stop or needs to turn, pedestrian or cyclist maybe..... Whatever it is you find yourself having to take your foot off the gas and use the brake petal instead. But it's no problem cause the road is clear remember? Or so you thought....
As you press harder and harder on the brakes to get your vehicle to stop you discover that what you thought was bare pavement is actually coated with a very thin, unnoticeable layer of ice. BLACK ICE as they call it. And as you probably well know, ice under skidding tires makes you keep on sliding. Totally uncontrollable, you might as well take your hands right off the wheel and take a prayer position because that's all that's going to help you now.
Around and around you may go, and when you finally do come to a complete stop, if you're lucky no harm has come to you, your passengers or your vehicle. OR you might end up in a ditch or you might have an impact with whatever it was that made you have to brake in the first place. Either way, once you have stopped completely, you can then assess what has transpired since you began to spin uncontrollably. That's usually about the same time you get that nervous, worry feeling inside. Quite often if feels as though someone had sucker punched you in the gut and it can be quite a while before you are able to calm down and that feeling subsides.
We had "black ice" occurrence yesterday while on our weekly trip to London. It wasn't exactly as described above or as you might think. We didn't have trouble with driving or with the road under us at all. Our occurrence happened while on the road of life and a life dealing with MPS.
We have be motoring along in our journey with Jasper and MPS. Not sure you could ever call it being in cruise control but it almost feels like it at times. He's taken to his treatments well, never had side effects and most importantly, all of the specialists we have been seeing for check ups have been happy with his progress, or in the case of MPS, lack of progress. Things have been stable for Jasper in all respects and when things are stable you start to just cruise along, going day to day.
Until yesterday, as I said, we were forced to take our foot off the gas and apply the brakes. As soon as we did, we hit a large patch of "black ice."
Jasper had an appointment to have his MRI repeated since it had been 12 months since his last one. So, up early we got, left home at 6:30am to begin our day. Seemed like forever but by 11:15am Jasper was asleep and then Pam and I went back to the waiting room to of course, wait.
When it was finally over, we waiting for a bit more, until Jasper was alert enough to head over to our usual spot in PMDU for his infusion.
While his infusion was running we got a visit from the Neurosurgeon. She had with her a print out of that day's scan as well as a shot from last years to compare.
BLACK ICE.
A common symptom of MPS is spinal cord compression. Waste builds up and cause the spinal canal to tighten up and quite often end up compressing on the cord itself. Obviously, any unnatural pressure on the spinal cord can cause any number of neurological problems and the only way to fix or prevent it is very risky and invasive decompression surgery.
In Jasper's MRI from last January there was noticeable room in his canal, as you could see room for fluid in and around the spinal cord.
This year however, there wasn't any room in there. Things looked tightened right up. There isn't any evidence of compression yet, and the Dr was happy with his reflexes and how easy they were to find etc. But..... they were a bit puzzled by the lack of room and afraid that we might be headed for some eventual compression.
We're spinning uncontrollably. As Carrie Underwood so properly puts it in her song, we have not choice but to put our hands up and let Jesus take the wheel. It's out of our control and entirely in his now. We put our faith and our hope in him completely.
So, rather than waiting another year for follow up MRI, we are going back in 6 months. Again, hoping that things don't worsen any further.
Of course, there's always a chance that the MRI wasn't 100% accurate or that the radiologist and neurosurgeon aren't reading it correctly in regards to his condition. It is true, they don't see MPS all that often, if ever, so they have no one else to compare it with in London. And there's a chance that if Jasper grows, he may stretch out his spine etc it might open up a bit more on his own. We're pressing harder and harder on the brakes to get us to stop the wild ride.
Those are the bright sides, those are the possibilities that we can hope for. On the other hand, what we fear is that it will tighten up more and force the need for risky surgery.
Now that we're done spinning and have come to a complete stop, we now have that awful "punched in the gut" feeling. Sick to our stomachs, can't sleep, don't want to eat etc etc.
Yes, things aren't as good as we hoped they would be, BUT we have to remember they're not as bad as they could be either, yet at least.
I realize it's been over a year since our last blog entry and most of you have probably given up on following cause there hasn't been anything to follow. I do apologize and part of that reason is due to the fact that things have been good and we've been travelling down the hwy without worrying about bumps or black ice.
Signing off now, with hopes that none of you have to experience any kinds of deadly Black Ice out there. Please take your time, slow down and make sure alway keep an eye out for the unexpected.
Keep in touch.
Love from the More's as always.
