Bye bye

crossed eyes.

Eye surgery is scheduled for this Thursday, August 5th.

I guess it was inevitable. Surgery has been on the horizon for over a year since his first appointment. We're lucky we've put it off this long.

In other updates...

We've moved from University of Chicago to Children's Memorial. We made this move hoping that the spina bifida clinic would help to limit the number of trips we would have to make since many things are scheduled on one day. Unfortunately, this hasn't exactly been the case. I will say, however, that our first clinic went well-we loved all three doctors we saw-but getting new doctors always opens the doors to more tests, even if you send over your previous medical records. It would probably take me the rest of the night to type out everything we have done this summer, so I am going to try and condense it as much as possible.

Urology
A VCUG test showed that Nate still has reflux in his L kidney. The doctor was concerned that it doesn't seem to be getting better, even though we are cathing, and mentioned that down the road we may need to look into surgery.

He had a CMG or urodynamics test done to check the pressures in his bladder. He was a rock star through the whole process. His bladder filled to 280cc before he started "leaking". Still haven't met with urologist to follow up with this test yet (see Neuro below).

We are constantly having BM problems. It's either all or nothing, literally. We've had a couple bouts of 7, 8, 9, even 10 days with no BM. Lots of enemas, fruit, and miralax. Happy to report that as of today he's in the "all" category.

Ortho
We finally met with an orthopedic surgeon. We'd gone to Shriners once when he was about 9 months old but he was too young to really come to any conclusions. I was hoping that we could get scripts for RGOs and a wheel chair (although I'd heard that this was sometimes difficult to obtain-doctors aren't always on the same page as the parents) but thankfully, we loved our ortho and she was on the same page with us. Since that clinic visit, Nate has gotten new AFOs, been fitted for RGOs, is getting a lift in one shoe (due to his L hip being displaced, his L leg is about 3/4 inch shorter), and been fitted for a wheel chair. The wheel chair has probably brought me the most anxiety. Not because of the thought of my kid being in a wheel chair (I am honestly genuinely excited for Nate to be able to get around independently) but because we want to make sure we choose the right one. We still haven't technically decided, and we have a rep from the company bringing two different chairs by this week. I'll post updates/videos when we get the RGOs, walker and his chair in. BIG things happening in this department, though!

Neuro
Here's the long and short of it. Ortho found some significant curvature in Nate's spine (44%) and referred us to a spinal specialist. The spinal specialist believed the curvature could be related to tethering and referred us to our Neuro Surgeon. Our Neuro Surgeon wants Nate to have another MRI before we schedule another clinic appointment. We can't get his RGOs or meet with uro to follow up with his urodynamics test until we can make a clinic appointment. I am currently playing phone tag with the SB coordinator about scheduling an MRI. Sigh. And the saga continues. To read more about tethered cord, click here.

Sleep Study/Apnea
Nate also had another sleep study. He was soooooo good about it. He must think it's old news now, since this was his 4th one. Slept like a rock all night! The test showed that he is having bouts of central AND obstructive apneas. The good news is that the oxygen he is on seems to be keeping the episodes from being too severe. So, oxygen it is, indefinitely.

I think I've been avoiding writing this post for a long time. I like posting about the the fun family stuff and not dwelling on the medical stuff. However, if my mission is for this blog to be helpful to families who find themselves in our situation-I must also make it a point to post the medical side of things. This post was an overload, even just for me to type out, so I promise to sneak in a little bit at a time from now on.

Please pray that the surgery goes well Thursday. It's outpatient and should be quick, and although it's Nate's 5th surgery it never gets any easier to hand your baby over to someone who will take them to an OR.