Aaaaaaaaargh! Sums it up

A part of it

Before even becoming pregnant with baby #4, I had visions of my kids playing all together. Running, playing ball, laughing, all that good stuff. I have two girls and two boys. I found out G was a boy the same day I found out he was going to have spina bifida. No, wait, I actually found out he was a boy when we were told he had no chance to live. The next day we found out it was just spina bifida when we saw the perinatologist.

Those dreams of siblings and brothers seemed to crash around me. My overloaded, worrying brain couldn't conjure up happy images. I saw a little boy in a wheelchair watching from the sidelines, left out and unable to do anything. Fortunately, this dismal picture was so far from the truth. The reality.

I had such a narrow view of what disabilities really, truly entail. Oh, yes, my dream is still different than it was when I became pregnant, but it's not doom and gloom. I have a new understanding of what disabled means, how it works.

G is such a part of our family. I remember when I had a difficult time imagining what life was going to be like with him, and now I can't imagine life without him. He fits in so perfectly. He's that fourth child I dreamed about, but an even better reality.

Is there something in the air?

What a face! :)

I've been making cryptic remarks lately about being stuck in the hospital in January. For the last two years, we've had weekly appointments in January (for casting) and hospital stays (shunt revisions).

We do have an orthopedic appointment for G coming up in January, and I actually should be making one for my oldest daughter also right now, and I dread it. I know we'll be doing 'something' whether it be more casting or discussing the big S word. G's left foot has regressed quite a bit in the last two weeks, and he's bearing weight and we don't want any pressure sores to develop. So far, so good, though.

As far as the shunt goes, I just pray this is our first January without a revision.

Life took over!

Life took over, and I didn't feel like writing for awhile.

My mom spent 37 days in the hospital, and she appears to be in remission! She's continuing maintenance chemo, and she was doing really well until today. Today she has a fever, and we hope it's not an infection. She'll find out more later when she sees the doctor. I feel so blessed that my mom responded so well to treatment. When those words and enter your atmosphere, there is such a shift, and such a process.

G has been doing well. His loaner chair is gone, so he's been without wheels. He is supposed to be getting his own wheels, but of course, it's taking forever to be approved and processed.

G is progressing on the bearing weight and taking steps front! He gets onto and off the couch on his own, and he's taken about 2-3 steps alongside the couch. One of his clubfeet is rapidly regressing, though, so we need to address that soon.

We recently saw a neurologist regarding possible seizure activity. We thought maybe shunt in October/November, but the ventricles appeared to be stable. We saw the ophthalmologist in November, and his optic nerve swelling appears to be chronic. I was a bit discouraged about that as I hoped we could use that as an indicator. The neurologist ordered a EEG, so that is our next step. Shunt doesn't appear to be the problem, and I'm not sure if there is any seizure activity going on. Sometimes I worry I'm too paranoid and having him tested too much. Sometimes I worry I'll miss something. I need to stop worrying, don't I?!

Last year, G was doing some serious headbanging. The PT, primary, and neuro NP all thought it was probably behavioral. He was 14 months old, and headbanging isn't unusual at that age. Even I convinced myself it was probably normal. It wasn't. From November to January the poor kid banged his head, banged our heads and noses, trying to relieve some serious pressure. It became more aggressive, and I called about it several times before I was finally listened to that I didn't think it was normal anymore.

I think the fact that G has had unusual presentations of shunt malfunction that only I have picked up on due to their subtlety (and lack of "clinical signs") has put me in a "hyper-aware" mode. Maybe paranoid is a better word for it. Anyway, I feel like I've lost my touch and don't know what's going on. I don't want to subject him to anymore tests, especially CT scans in light of recent studies. I don't want to just let things go on either.

And, toddlerhood. Um yeah. Confuses "normal" a bit. He's two and knows it. :)