Spina Bifida boogie man

That's what one of my SB mommy friends calls it ... when everything is going just fine, and then BOO, it jumps out and scares you all over again.

Nate has been walking for 2 years now. Our shunt fears are long gone. The potty training thing has been frustrating, but we have a game plan. And we decided that when Nate starts Kindergarten (next week!!!) we will take our first hiatus from all therapies. Things were going very well. Spina wha?

Over spring break this year, we let Nate wear his short, shoe insert braces all week, and by the end of the week his big toe on his left foot hurt, and his left foot was turning out. That's when the PT really reprimanded us for letting him wear his little braces so much. (Her: "Did you not understand me when I said he could wear them 2 hours a day?" Me: "Yes, we understood you, but we did it anyway." lol) She said he was turning his foot because he was unstable and needed a wider base of support. But it was odd because his left foot has always been his straight one. The right foot has always turned out some, and I used to stress about it, but over time it has turned in quite a bit. Now all of a sudden the left one turns. And even with his taller braces, it hasn't turned back in. I don't even know if the short braces had any relevance.

So I have been asking the PT about the foot turning and she assured me it was because his braces were wearing out and he needed new, stiffer ones to provide support. I was still worried, and right after I got back from national conference, at the beginning of July, I called the neurosurgeon's office about it. We decided to move up his clinic appointment from September to August 22. That would be the first chance available to see the neurosurgeon, ortho, and urologist all at the same time.

In addition to the foot turning out, we have also noticed that Nate has been getting constipated more often lately. He had a belly x-ray and was pretty backed up, and I didn't even know it. If you're not immersed in this SB world, these signs point to tethered cord syndrome. All babies with repaired Spina Bifida have a tethered cord. When they do surgery, scar tissue forms, and that gets stuck on things. As the child grows, it can pull on it and start affecting nerves. The solution is a pretty major surgery to go in there and snip the tethering to release it. 

After we moved up the appointment, I really tried to convince myself I was being paranoid. Maybe we're just seeing things. Noo... he really is turning that foot out pretty dramatically. Maybe it was like that all along and we're just noticing up. Noo ... that is just dumb, lol. But I tried to put it out of my mind until we could see the doctor.

One night I was shopping at Kohls, and I got a text:

Blake: Nate can't move his left foot around in circles and he can't wiggle those toes
Me: What?!
Blake: I had Nate laying on his back and had him rotate his ankles--he can do the right one well but his left one he can't turn and I had him wiggle toes and he can't do it on left foot. I think that explains why he is turning foot out more--loss of control so turns foot out more since he can't spread out toes. That concerns me for tethered cord.
Me: (speeding home)

The whole way home I was fighting back tears and telling myself Blake was seeing things and just being a hypochondriac as usual. He has always been able to move all his toes. But when I got home I tested him too and sure enough he was not moving them. I told him to move his toes up and down like I was doing, and you could tell he was concentrating on doing it, and only the right toes moved. I could tell he was confused. He told me he only wanted to do it on the right side, he was better at it on that side. Blake and I just looked at each other, and I told him we would freak out after Nate went to bed.

And we did. I immediately got online and started asking my SB mommies what to do, as Blake was saying, "Get online and ask your mommy friends!" And I was stunned by the huge outpouring of support and concern and prayers--even still. This really is an amazing community. Normally I'm telling everyone else to calm down and not panic, and now I was asking someone to tell me that. I didn't know what to do--take Nate to the ER, call the on-call neurosurgeon, wait until Monday to call the neuro's office (why do things like this always happen on Friday nights!). I sent a facebook message to Mary, my nurse from the MOMS study at Vanderbilt, to ask for advice. I also called Kellie, another SB mommy friend, and came up with a plan, which calmed me down enough to sleep.

The next day I did call the on-call neurosurgeon at Vanderbilt, who was not at all helpful and told me to call the neuro's office on Monday. So we waited. And prayed. On Monday morning, I worked with the clinic nurse to get Nate scheduled for an MRI and visit with Dr. Tulipan as soon as possible. Turns out, Dr. Tulipan only sees patients on Monday (and I didn't have enough time to high tail it to Nashville for that day, and he sure didn't have time for us), and he's in surgery the rest of the week. Okay, the next Monday? On vacatiion. OF COURSE. So the next Monday, August 15, it is. I texted Blake to tell him. He reminded me that is the first day of Kindergarten. CRUSHED. That was really the first time I cried about it. No more "thank you, Spina Bifida, for making us better people." For the first time in a long time, I was angry and sad about SB. For the next few days I tried to come up with every possible scenario to fix this. We thought about planning an ER visit, until we learned that Nate would probably not even be able to see Dr. Tulipan that way. We thought about doing an MRI here in Louisville and sending it to Dr. T, but Dr. T wanted us to use his MRI. We thought about waiting until our scheduled clinic appointment a week later, but I was afraid the MRI might show some kind of emergency. I was going over all this with another SB mom at work one day, and she suggested we go down to Nashville for an MRI this week (before school) so Dr. T can look at it when he returns from vacation, but unless there was something crazy we wait until our clinic appointment. If she wasn't over the phone I would have hugged her! Brilliant! Why didn't I think of that? So I sent an email, and it was settled.

This Thursday is Nate's MRI, and I'm scared to death of sedated MRI's ever since the time they put him under and he stopped breathing and his lips turned blue. Only for a second, but it was traumatic for mama. Next week he starts Kindergarten. And the next Monday is his Spina Bifida clinic where we talk to Dr. Tulipan about what to do. He may say it's not that at all. He might say it's probably tethered cord but it's not bad enough to operate yet. Or he might want to schedule surgery. Gulp. Nate has never had a surgery since before he was born. I doubt a mom ever gets used to her child having surgery. But the first time? At five years old? I can't even think about it.

I'm scared. But I have the very best support system of SB mom friends praying for us and sharing their experiences and reassuring me. And of course my family and friends are supportive as always. I have come to a place where I realize that God is in control of this, and none of my scheming to get prime appointments is going to make a difference in the world. And it's a good thing He's in control, cause he loves Nate even more than I do, and he has good plans for Nate. That is so comforting. So I guess I'm not as scared as I was at first, and I'm totally trusting God on this one. Nate is in good hands.