Medical Updates for Isaac

On Wednesday, we took Isaac to the Spina Bifida Clinic at Children's Mercy Hospital. The clinic is a great place to be able to see multiple doctors all in one setting and it was nice to have all of his providers except for his Orthopedist that is following his spine there to consult with. To give a quick overview, we saw his Neurosurgeon, Orthopedist (for his club foot), Urology, Physical Therapy, Rehab, Nutritionist and a general Pediatrician. The only downside is that his appointment lasted almost 4 hours. That is a long time to try and keep Isaac happy!

From his orthopedist, he will continue to wear his foot brace for almost another year to continue the correction of his right club foot. It will not be essential that he is wearing the brace every night though it will be used more often than not. The explanation given to us was that we hypothetically could get away with bracing every other night, but with a child Isaac's age, it is hard to explain to them why they have to wear their brace some nights, and not others. So in theory, if Isaac isn't protesting, then it would likely be easiest on him, if we just keep the routine the same, and have him wear it nightly. And if we skip a night here and there, no big deal.

From his neurosurgeon, Isaac will continue to be evaluated by Dr. I (who will continue to consult with Dr. S). Our biggest concern at this point is Isaac's tethered cord, from a neurological standpoint. Our questions centered around the risks vs. benefits of the surgery to untether Isaac's cord. Initially, this procedure was to be done in tandem with Isaac's spinal stabilization surgery. As of Isaac's last appointment with Dr. S, the spinal stabilization surgery was tabled until he has a CT and MRI to reevaluate to make sure that the procedure is necessary. We were afraid that his tethered cord would not be addressed, which is why we had these questions. In talking to Dr. I, we just asked what the risks were to not untether the cord. The answer to that is that it is highly likely that his legs and lower trunk function would have a significant chance and likelihood of getting worse, if we do not untether the cord. A better explanation of this and visualization is that imagine as he gets taller, and his spinal cord remains attached at the bottom, it will strain and pressure will be put on it, especially where his spinal column narrows.

However, untethering the cord will be more of a preventative measure. Isaac's legs likely will not gain more strength or use because of untethering, but we would be more or less preventing them from deteriorating any further, and preserving the use that he does have in his legs and lower trunk (including, but not limited to bowel and bladder function).  We can continue to work on gaining muscle in his legs through intensive physical therapy, and working with him in his stander, which we will continue to do.

And finally, the update from urology. Isaac has a bladder that is thicker than usual and a high amount of pressure within his bladder, and could possibly be classified as a Neurogenic Bladder.

In addition the muscles that should work together to allow the bladder to empty are not working together properly. This also increases the pressure in his bladder and does put him at risk of urine backing up into his kidneys, and could in turn cause kidney damage. Dr. G was unsure what the long range implications of these developments will be except that it will range from his muscles learning to work together, to maybe, to the other end of the spectrum which would be a catheter being needed. In the short term, Isaac will start a new medication that will hopefully help his bladder become a little thinner and more elastic. If this happens, it should hold more urine and might allow things to start working together a little more. We shall see. If a catheter is needed, and it is quite common amongst individuals with spinal defects, we will do all of that explaining at that time.

Another visitor that we had was Physical Therapy and Rehab. They mainly wanted to get a baseline of what Isaac can do now, what muscle groups he uses, and note any that he does not. They watched all of the way down to his ankles, and noted that he does move his ankles on his own, not just reflexively. They asked us if we had thought about a wheelchair for Isaac as he gets older. This might be a shock to some of you - but yes, we have had several very indepth conversations with some of Isaac's First Steps therapists, and have begun to cross that bridge mentally. I won't lie. It was a tough bridge to begin to cross. We first started talking about it back in January. I (Kristi) remember a very cold day, spending much of my lunch talking to one of Isaacs therapists on the phone, and working through some of my emotion around it. Too bad she couldn't bill my insurance for that call!!! Since then, Ryan and I have had a few other conversations about it, but hadn't put that much thought into it. Fast forward to this appointment with PT & Rehab, and they asked if we wanted to see a kids wheelchair. They mentioned that it would be a bit big for Isaac, but would give us a good idea as to what is in our future. We said sure, to go ahead and bring it down to our room. As soon as they brought it in, Isaac was chanting "Go, Go, Go, Go, Go..." Very similar to Finding Nemo, when all of the birds are going "Bite, bite, bite, bite, bite!!!" He clearly wanted to sit in it, so we buckled him in. It was almost like it was second nature to him, and his hands reached out for the wheels, and he immediately started maneuvering the chair. The look on his face was priceless. He was SO proud that he could make it go on his own. He even figured out how to turn circles, and go forwards and backwards. All within a matter of about 10 or 15 minutes.

Let me be completely honest. Through all of this - sure there are days and moments that stink. But let me also tell you, that in the instant that I saw the look on Isaac's face, it sure said so many words to me. It is hard to explain, but I really feel like what God taught me on Wednesday was that this is SO not about me!!! This is about Isaac. And to Isaac - that chair is freedom and independence. Isaac needs us to be happy. To be upbeat and to be his biggest cheerleaders. And Eli needs us to set an example for him. We need to be able to lean on one another, so that we can be examples to our boys on how to deal with adversity and disappointment and be their biggest advocates.