Spina Bifida Clinic.


Yesterday was D’s second time going to clinic. And again, it went really well.

As much as I hate living here, I always feel so blessed to be in Central Florida since it has some of the most amazing doctors in the country. I’ve heard so many families go to clinic and have horrible experinces…negative doctors, rude nurses, unanswered questions and so on. Our clinic is so well organized. I like and dislike that you don’t really decide which doctors you see that day. It’s nice to meet new ones if you’re not super happy with who you’ve seen in the past, but it kind of sucks if you have to see someone different than a doctor you love.

A nurse calls you a week before to get a quick update. Then you go in and meet with her first. Then you see all the doctors, plus a few consults that are just getting updates. Yesterday we saw a Neurologist, Urologist and Orthopedic Surgeon. They were all really happy with his progress, which was great.


We saw a different Neuro than normal. We’ve only seen her when D was in the hospital, and I don’t dislike her at all, but she is not one of my two preferred docs. Whom I prefer just because we’ve seen them so much. Last time we were at their office they told us not to bother getting an MRI done before clinic, so there really wasn’t much to talk about. They just looked at him, felt his head, checked his back and played with his feet. All is well. We go back to their office in three months.


We saw a doctor we had never seen before but I LOVED him. And he LOVED Donovan. He said that he is still having a tiny bit of reflux but it is almost completely gone, so that is great. It also means no more VCUGs (they empty his bladder with a cath, then fill it with some dye, then probe him with a sonogram and wait to see if he pees it all out). Donovan hates them, and Max hates taking him to them. We’re still doing with some constipation issues, so he decided it’s time to move onto meds. So, he’ll start taking Mirilax every day. He did also discuss that once he’s two we’re going to have to revisit the cathing issue if we want to get him out of diapers. He said only about 4-5% of his SB kids go through childhood without being cathed. We’ll see how it goes when we get there. I’m not a fan of cathing, but we’ll do what we need to do. I’m not really concerned about getting him out of diapers at two anyway.


The Ortho was super pleased. Reiterated again that he doesn’t need him. We still see him every six months though. Just in case anything changes.

So, that’s about it. Overall, really well!


One Comment Add yours

  1. Great update!

    And good news!

    We love our clinic, too. Well organized (if not a bit chaotic with all of the doctors)!

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