Progress and perspective

My mom says I can pack more into a day than anyone she knows. And Friday was that kind of day.

It started with me taking Nate (and Georgia tagged along) to therapy. Every Friday morning he has back to back OT and PT, and during PT he rides the horse (hippotherapy). For the last couple of weeks we've had a substitute PT for one reason or another, and we had a very interesting conversation this time. She was taking a look at his braces, which are called SMOs and look pretty similar to this:

I can't tell about that one, but Nate's have a top strap around the ankle. He didn't use to have this top strap on his previous braces, but we noticed he was crouching a bit and bending his knees when standing still, so the PT thought this ankle strap would force his ankle a bit more still and make him stand up straighter. When he first got it, it was rubbing his ankle and making a place there, so the PT said to just leave it very loose. After that healed, I started strapping it tighter, thinking it would do its job that way. And it has--I really haven't noticed Nate crouching in the last several months. So apparently he has gotten stronger too. But a couple weeks ago, his regular PT told Blake that I was strapping that top strap too tight, that it needed to be lose. So on Friday when I was talking to the sub, I asked about this. If it's that loose, it's not even doing any good. Why not remove the strap? She agreed and said we could cut off the strap because it really doesn't look like he needs it anymore (after watching him run around without it strapped for awhile). Great! The less support, the better. I want Nate to be moving every single muscle that works, so we can get them stronger.

I was telling her about a night last week when Nate asked Blake to help him take his shoes off because he wanted to dance. Apparently his shoes were getting in the way, and he had some major dancing to get done. Nate can walk pretty well without his braces and shoes, and we like to give his feet that exercise (the braces stabilize his feet and ankle, so he can't move them much). But his feet pronate, which means he sort of stands on the insides of his feet a bit. Well Blake was watching him dance barefoot, and not only was he standing on the inside of his feet, but his left foot was so distorted that it looked like it was curving outward. It didn't look good. This PT said she understood we wanted him to be using those muscles, but he needs some support on his feet.

This is the way she explained it, which made total sense to me. You build strength from the top down. So first the hips, then the knees, then the ankles, then the feet. Well, we have worked on the leg above the ankle by strapping the ankle, and now it's time to strengthen the ankle. So we will need some side to side movement there that he can't do with his SMO on, but he will not be able to properly exercise his ankle if his foot is a mess. At first she suggested just a mid-rise shoe for him to wear around the house, but then she brought up a lower brace. He could wear this inside of a shoe, at home and maybe at PT sometimes, to stabilize that foot so we can strengthen the ankle. Something like this:

That right there makes me want to jump up and down. I know, I know it's not what he'll be wearing full time, but even the prospect of having these tiny braces in my house makes me excited. He's getting stronger! Maybe someday this is all he will need. The great thing is that even if our insurance doesn't pay for these, a pair is only about $50, so no biggie. I wanted to get him measured right there, but she said we'd be thinking about it over the next couple of weeks. She obviously isn't as excited as I am, and as Blake was when I told him about it. :)

Anyway, after therapy, the kids and I went out to lunch, which was a disaster because both were so tired and whiny (that is putting it mildly), and then we drove to Nashville (about 3 hours away). Yes we did. And for the last hour, Nate asked, "Are we there yet?" almost once a minute, every minute. It was a blast. But it was time for his 6 month urology update at Vanderbilt. We always do his big SB clinic in the fall, and urology is the only specialty that insists on seeing him another time of the year, despite the fact that he's never had a single problem. Anyway, we like them, so it's okay.

They did a renal ultrasound, and his bladder and kidneys looked perfect. I really like his urologist, Dr. Tanaka. When we saw her in October, potty training was going very well. Since then, Nate regressed and we have taken a total break from it because he is so resistant. She assured me that we did the right thing. IF he is able to potty train typically, which is our hope, it's only going to happen when he wants to do it. She reminded me that even typical boys potty train later than girls, and kids with SB who do potty train do so later than their typical peers. So it does not alarm her at all that Nate is still in pull ups. I told her that our goal has been that he will be in big boy underwear by Kindergarten. She said that would be wonderful but she doesn't think it's very realistic, and if it doesn't happen to not consider it a failure, for any of us. She assured me that eventually, he'll want to do it. I have had my doubt about that sometimes! But right now, that's my prayer--that Nate will WANT to do this. Otherwise, it's a no-go. It's often frustrating for me when I see other kids who have SB and are younger than Nate and they are already wearing big boy undies because they're on good bowel and bladder management programs. I asked Dr. Tanaka if she saw any reason for us to start any of these programs with Nate now, and she said no. There's no health reason to do it, and if he is resistant to just sitting on a potty, he's going to be even more resistant to those programs. So we wait. But I do feel much better about what we're doing ... or at this point, what we're not doing.

Nate and Georgia were actually great at the hospital. While we were in the room waiting for the doctor they ate snacks and chased each other and played games and got along like they like each other! which they usually do. Nate asked me the name of the doctor he would be seeing, and he practiced saying it. When she walked in, he said, "Hi, Dr. Tiniki!" :) Then he tried it again and said Dr. Tanaka, and she was impressed. As we were leaving and Nate was running ahead of me, I heard a nurse ask Dr. T., "Is that Nate? Is he a prenatal surgery baby?" She also sounded impressed.

For being so good, Nate got the supreme treat of being allowed to hang out at the big model train display on the first floor of the hospital. As I sat there watching him run around pushing the buttons, laughing, and playing with the other kids, I overheard a couple call their parents to give them an update about their daughter who was in the NICU. When I am at Vanderbilt, it feels like yesterday that Nate was in the NICU. It is such a time warp. I can be washing my hands, and the smell of the soap can transport me back nearly five years ago to the NICU, where I stood washing pump parts at the sink countless times a day. My mind starts playing video of us walking Nate past the trains in his stroller when he was a baby, then the time I brought him for his 30 month checkup, and he stood there at the trains in his walker. On Friday I sat there watching him run around with the other children, and people were passing by, totally unaware that Nate had any issues at all. I wanted to grab them and tell them what a miracle this was. And then I saw children with bald heads walking by, and I tearfully thanked God that he dealt us "only" Spina Bifida.

So back to me cramming so much in one day. After leaving the hospital (I have no idea what time it was because they're on a different time zone as us and I get confused, but probably around 5:30), we went to visit my friend Kathryn and her husband and three little boys. One is brand new, and this is the first time I had seen him. Her other two are a little older and a little younger than Nate, and oh my, Nate had so. much. fun. playing with these boys. They just disappeared for like an hour upstairs playing! Then they would run down and do a little skit or something and run back up. The whole time Nate would be yelling "Wait for me!!" :) We had fun, but we did not get much sleep that night, as Nate slept in the bed with me and kept reminding me he was NOT tired, and Georgia slept in a pack n play in the same room and ended up in the bed with us by morning.

Nate was so upset to leave his new friends, but we got on the road and headed to Bowling Green for a Spina Bifida playgroup. I had arranged to have this playgroup at a McDonalds that had an indoor playplace. Of course I had never been there before, so I hoped it had a place for little kids to play. Not so much. This thing was a huge climbing structure, with tubes and slides. We got there about an hour before the playdate started, and Nate said he wanted to try climbing it. I cringed. This place was crawling with kids, and lots of big kids. But I said go for it. He got halfway up the first tube and I could hear him crying. Kids were climbing over him. I told him he needed to either come back down or keep climbing. He chose to keep climbing. These tubes are solid, and there are only a few little windows where you can see anything, but I saw him get to the first platform and I yelled for him to go down the little slide there. He didn't hear me. He kept climbing higher.  At this point I was a nervous wreck. I couldn't see him. I couldn't hear him. Kids were everywhere. The only way down was this huge tube slide, that I knew he'd be afraid of. So I just sat there with my stomach in knots.

I looked around for a big kid--a girl--and finally saw one who was going in. I told her to look for Nate and said what he was wearing. She came down the slide a few minutes later and said he was all the way up at the top just sitting there and wouldn't come down the slide, but he was okay. First of all, the very top was like 20 feet up in the air. How in the world did he get up there?! And second, this thing is made for kids 12 and under, and I certainly cannot climb through these tubes to the top of the play structure!! The little girl went up, and next time I saw her, she had Nate in her lap coming down the slide. He was smiling. He wanted to go again. Oh my gosh! He's killing me! So the same thing happened again, including him getting stuck at the top and needing help down the slide, and another ulcer for me. Finally I asked the girl if she would show him where the first slide was. From then on he would just go up to the first platform and slide down the smaller slide by himself, which made me so much happier. Toward the very end of the playgroup, I heard crying coming from inside one of the tubes, but it was Georgia! How did she get up there?!!! My kids are monkeys. This time I did have to climb up there and rescue her. And I am so grateful that Nate can climb up there, but I am not going to McDonalds for a very long time.

Today we recuperated, but I think I could use another day or two. It was a big weekend.