watch & wait & worry

A few days ago it was finally time to discuss the MRI results and go over Carson's symptoms with his neurosurgeon. I was extremely anxious for this appointment. I had no idea if his doctor would recommend scheduling a surgery, or if he would want to just watch and wait.

Thankfully his neurosurgeon is very conservative when it comes to operations and he was content to watch and wait. While we are relieved that we don't have to schedule a surgery, it's hard watching and waiting for things to get worse. Carson's bladder/bowel issues have resumed back to normal but if they change again we need to do more testing. And of course tonight we saw a minor change again (many of you know the inner dialogue: is this the start of a UTI or is this something else?) I'm guess I'm struggling a little bit. I want to celebrate the fact that we have no surgeries on the calendar but at the same time I'm too anxious because I'm watching for symptoms to happen that could mean surgery. Symptoms that are important to catch early on.

These anxious feelings are reminding me of Carson's first year of life where everything felt uncertain and there was a lot of watching and waiting. I have been frustrated many times thinking about the first year because looking back I feel like I "worried away" his baby years. Months later here I am again worrying!

So here I am learning the same lesson again. Worrying does not make it better, I'm not in control, God knows what we need, He is in control, His love never fails. Carson is a blessing and his life was meant to be enjoyed and I cannot let fear hold me back.

The MRI and the details

This morning my phone rang at 7:15 am and even though I was still half asleep (okay, completely asleep) I knew exactly who it would be. Ever since we scheduled our MRI several weeks ago I have been praying that there would be a cancellation so that we could do the MRI sooner. Who else would call me at 7:15? Sure enough, there was a 90 min time slot open, perfect!

Unfortunately the MRI had to be scheduled in the first place because of some new problems that have popped up with Carson. 6 weeks ago we have discovered some sudden bowel/bladder changes. This can be a concern because it can indicate that there's a tethered cord. Carson's neurosurgeon decided to issue an MRI to take a closer look at his spine to check on the tethering among some other things.

Coincidently we also recently had an appointment with Carson's orthopedic surgeon who detected minor scoliosis in the thoracic portion of his spine. It may not be serious but it may be a symptom of some changes going on in his central nervous system. The scoliosis could be a symptom of a tethered cord, his syrinx (hydrocephalus, or fluid, in his spine), or his chiari (a malformation of the cerebellum in his brain). So as you can see it's quite complicated. The new problems we're seeing in Carson could be symptoms of several issues.

Hopefully the MRI will give us a good direction if there needs to be some sort of surgical intervention, but most of the time the results are used as "one piece of the puzzle." I'm hoping and praying however, that with the help of the MRI we will have a simple, clear direction in terms of how we should proceed with his current issues.

Overall, the day went pretty well. The challenging part was denying him food until his MRI at 2pm. By the time we entered the hospital that was pretty much the only thing on his mind. Other than that, everything went well and I'm glad to have it all behind us.

For the past few years we have certainly had our share of "the unexpected," yet it is always hard to get used to. These past few weeks have been stressful dealing with the new symptoms and changes with Carson. And although I try to be proactive and meticulous with his care I am reminded that there are many aspects of his condition that are simply out of my control. It's a hard lesson every time and I'm trying to trust God that He is in control.

Now we are eagerly anticipating the follow-up appointment with Carson's neurosurgeon. Please keep us in your prayers.