Update

So Wednesday was a verry long day, but with very good results. The MRI showed that although Oli's brain has changed a bit since his last MRI, they do not see any obvious reasons for seizures or the need for a shunt. This is such a relief, since I really thought that we might be going the way of a shunt. He also hasn't had any seizure-like activity in almost a week, so I am hoping that has passed, as well. As always, we are in a wait and see phase. But I'll take that over needing to to get a shunt or seeing a problem that could be causing the seizures. We are going to follow up with neurology, although the wait time for an appointment is insane.

The whole MRI process took so long on Wednesday that we wound up missing our clinic appointment. But Oli did get his new AFOs (ankle-foot orthotics) and got measured for his KAFOs (braces that extend AFOs to brace the knee and support the hips). He has been doing extremely well learning to stand since we took his full casts off two weeks ago, and I am hoping that the KAFOs will give him the support he needs to stand on his own. I don't really know what to expect in terms of him standing or walking (more "wait and see"), but he has exceeded our expectations at every turn. Hopefully he will continue to do so.

To make the KAFOs, the orthotist had to make a mold of Oli's butt. I made Tim take a picture and will upload it as soon as I get it off of his phone. I felt silly enough taking a picture, but really wanted to ask if we could have the mold when they were done with it. Luckily, I restrained myself.

Our next steps are to follow up with neurology, reschedule clinic, and make a hearing test to see if that can explain his minor delay in speaking. Getting through Wednesday was a big deal, and I'm excited to keep moving forward.

Just to be on the safe side...

Any time a week starts out slow, the action picks up before we know it.

This week started with a 5/13 appointment for Oliver to pick up his braces. YES! FINALLY! I'm so excited. I can't wait to see those little feet on a daily basis. Plus, his casts are so disgusting now (covered in dirt, Popsicle, and maybe even a little poop) that I need them to come off. Then, because I raised the question of whether or not he would need knee braces to stand, we added a spinda bifida clinic visit so that the PT could check him and possibly have him measured for KAFOs, or knee braces. And today, we added an MRI.

Two times in the past week and a half, Oli has had an episode where his head goes kind of limp, his eyes flutter, and he is unresponsive for a minute (or less). I have not seen this happen, but Tim's mom has seen it twice. She was pretty freaked out by it, so I called neurosurgery today and they ordered an MRI immediately. Debbie, the Neurosurgery NP, said it sounds like seizure activity. This is the second time we have suspected Oli of seizures. The first time turned out to be nothing. Oli does have a wierd habit of getting "lost in space" for a minute now and then. Combined with these two episodes, it seems like a good idea to have an MRI. They will check for both increased ventricle size and any changes in his chiari malformation. So this could have implications for seizures and shunting.

It's hard for me to wrap my mind around it, because I haven't seen it. It happened the other day when I was home, but he was outside with Tim's mom. She brought him inside immediately afterwards, and he seemed fine. But I know what it is like to see him do something unusual, and it is very unsettling.

We just got the all clear for six months between neuro appointments, which is longer than we've ever gone. And now we're back only three weeks later. Please pray that it is nothing serious.

Sunny Days, Everything's A-OK

We have been enjoying a heat wave lately, and at the Chewning house, we have taken advantage of it. Friday was Nanny's birthday, so we had a picnic at the park. Saturday was Rutgers Day, so we went to Ag Field Day on Cook Campus. We even got a fish.

But the biggest day of the weekend was Sunday, when we went to Sesame Place. I got an e-mail earlier in the week saying that it was free for children with disabilities. We were planning on taking the kids anyway this summer, so I figured we might as well try it for free. I didn't tell the kids what where we were going, and Mac didn't know until we pulled into the parking lot and saw Big Bird's face on the parking signs.

Just like when we went to Disney for the first time with Mac, it was sort of surreal being someplace that I could remember going when I was a kid, but now being there as a parent. I remember the shadow wall (which is gone now!), the cardboard pizza, some sort of balance beam with water shooting out, and , of course, the ropes.

Things have definitely changed, but some of my memories held up. The first thing I noticed was how flat and sort of small it is. You can see the buildings and hotels surrounding the park, which makes it seem less "fantastic" and more blah. But even though it seemed small, we didn't get through everything at all. Mac went in the wading pool, climbed a "beach ball" mountain, and went CRAZY on the ropes. I went on them with her, afraid that she wouldn't be able to get far. First of all, I am too big, old, and scaredy for the ropes. Especially the tunnels -- I could literally barely fit through them. So that, combined with the fact that Mac could scale the ropes like a monkey, gave her a big lead on me. I wound up losing her going through one of the sets of tunnels, and couldn't find her. At one point, I could see her a level below me. I yelled to her, and I thought she heard me, but she just got off at the platform and started to go down the stairs. I started to plow down kids through the next tunnel trying to get to my platform (one level up) to get to her. I finally caught her, but it was a scary (and painful -- my knees are all scraped up) experience.

All in all, it was a great time. And a great weekend. And Sesame Place was, in fact, free (overpriced parking and food notwithstanding).

What is wrong with this picture?

a.) One couple shouldn't have two kids who are so darn cute.
b.) There are no parents in this bed, yet, it is the parents' bed.
c.) Nothing -- as long as the kids are sleeping, it's all good.

While we are very fortunate to have two cute kids, and it really is all good when kids are asleep (in general), the correct answer is B. I have chronicled our sleeping mishaps over the last year or two, so you probably know that sleep is a rare and precious commodity at our house. Indeed, I wouldn't know a full night's sleep if I got one (which I won't) and think that anyone who gets a full night's sleep has no right to complain about anything, ever. But that is beside the point. Mac and Oliver now both sleep in our bed, and there is just not enough room.

I have managed to enforce one rule -- everyone starts in his or her own bed. Laughable, but it buys me some time and sanity. This morning, we made it to 4:30 before both kids were in bed with us. A near record. That was 4 1/2 hours of uninterrupted sleep (for me). Once Oliver comes in, he falls right to sleep (of course, he has to pinch my neck while he is doing it). Mac, who is scared of monsters and shadows, still can take an hour or more to fall asleep, even after coming into our bed. This is no different than when we made her sleep in her own bed, except that there is less crying and back and forth. But I am convinced that she is not doing it for attention, but rather because she has real sleep issues. And I don't know what to do about it.

Am I spineless? A little. Crunchy granola co-sleeper? Partly; I actually like sleeping with the kids (when they sleep) and think that it is okay if both partners agree. Regretful that I let it get this far? Sometimes. I would like for them to be able to sleep on their own, and fear that I am not teaching/giving them that skill. Ambivalent? Not in that I don't care, but in that I can't decide what the right thing is to do. Tired? YES -- and that supersedes everything else.

So we are still without a solution and I'm more confused than ever about our sleeping arrangements. At least the kids seem happy in our room. And look how peacefully they are sleeping by the time I have to get up in the morning.

Look at My Girl Go!!

Here is Mac at her first big tournament. The file of her competing was too big, so this will have to do. She did awesome (of course)! She got her trophy for her jump front kick. I tried to upload video, but it didn't work. Still pictures will have to do.

PS - This is a double posting day. Check out the post below for an update on Oli's feet.