Surprises.

Surprises come in all shapes and sizes. Some surprises are good, and some, well, not so much. We’re (Isaac) facing one that isn’t so much fun.

This was just the other day - when KSU fell to Iowa State in the Big 12 Tourney.

You see, Ryan and I both had the same mindset on Isaac’s surgeries this past fall. We thought, “He just has to make it through these, and we’ll be smooth sailing. Yearly rod-lengthening surgeries, and we’ll figure out how to time those, and all of this will just be a distant memory of the hugeness of these surgeries.”

Fast forward several months, and we’ve been noticing that Isaac’s legs have become more rigid. He ‘crawls’ with his legs straight out behind him, kind of in a plank position. When he tries to pull himself up into a chair, he can make it up high enough, but can’t communicate to his legs to tell them to relax so he can maneuver into the chair. Then there are times when his legs are relaxed, and he can do some of these things. But, the progression has been that this has been happening with more frequency. When his legs are relaxed, we notice that his club foot is starting to recur because of the increased tone and rigidity or spasticity. It has culminated enough that Isaac will be having a CT Myelogram and Angiogram done to see if Dr. S & Dr. I can determine what precisely is causing this.

3.15.14 at the park close to Gigi's house

The initial thought is that there is a ‘gibbus’ or a knuckle like form of bone underneath where they relieved much of the pressure this past fall. This is right below where his spinal cord thins to several small fibers. The problem is that the gibbus is between the two growth plates there, and the hypothesis is that instead of growing lengthwise, perhaps it is growing outward and putting pressure on his spinal cord. Isaac will have a CT Myelogram to see if this is the case.

The CT Myelogram is where they will inject contrast into the fluid in Isaac’s spine so the CT will show defined pictures of the bones as well as the fluid-filled space between the bones in the spine, in hopes to help to pinpoint the cause of this increased rigidity/spasticity that Isaac is showing. 

The Angiogram will look at the blood flow to the suspected affected area of the spine. This will help the doctors determine the best plan of action, should we be faced with another surgery (which we are trying to mentally prepare for). It will be very important for them to know precisely where all of the blood flows that supplies the spine in that area. One of the biggest risks of Isaac’s spine surgeries is negatively affecting the blood flow to the spinal cord while trying to alleviate the problem at hand.

At this point, we are waiting to hear from the CMH to let us know if they are able to squeeze Isaac in sooner than next Thursday (27^th March) for this test to be done. Because we are seeing progressive changes in him, everyone feels that expediting the CT/Myelogram/Angiogram is the prudent thing to do.

With all of the technical stuff out of the way, I’d be lying if I said this wasn’t one of the more challenging things we’ve been faced with. Right now, the uncertainty of what is causing this as well as the uncertainty of what we will find out is difficult. Knowing that as Isaac gets older, this gets harder. He can question now – why do we have to do this? He is so aware of everything that is going on, we do our best to keep everything else very ‘normal’ for him and Eli (we'll let you define normal!).

Eli and his jelly 'stache

We’ll update again when we know when his test is going to be scheduled, assuming we’ll get in sooner than the 27^th. Otherwise, that’s the date we’re scheduled for.

Thanks for all of the thoughts and prayers!