This morning I was emailing another mom about clubfeet and shared some photos with her. I hadn't been in the clubfoot folder for awhile, but my goodness. G was so little. He's approaching three shortly here, and I find myself going back to that last month of pregnancy. It was so marked with doctor visits, with unknowns and worries, and here we are today.

Life, though more difficult in some ways, is so much easier now that he's here. It's just life when you're living it, but when you're waiting for something and worrying, you're not living. You're suspended, and frankly, it really sucks. Limbo Land. I've been fussing about the shunt the last couple weeks. Is he three (two) or is it excessive irritability? For him, he's more cranky than usual. Growth spurt or excessive sleepiness? He's growing but combined with the cranky, I'm not sure. I'm not a fan of this Limbo Land but I have gotten better at dealing with it. Well, I say that now. Definitely subject to change.

Regression

G is visiting the casting room again. His left foot has regressed, so he is back in a cast in hopes to regain some correction.

This is January. What a month for the last two years. I feel a bit of anxiety, as if something is just around the corner, daily.

January 9, 2006, G had his first shunt revision. Experiencing it for the first time was frightening and reassuring at the same time. Scary sending my child off for brain surgery but comforting knowing we had caught it and seen the signs.

January 11, 2007, we took G to the doctor and had revision number three (second one in May 2006) the next day. This revision wasn't so cut and dry. It presented oddly, the doctors were puzzled as to why, but we went home with G not quite looking right.

Two neurosurgeon visits, several phone calls, and amidst a bunch of other stuff, we returned to the ER at 3 am with a leaking incision on January 29, 2007. Surgery the next day.

We have also been in casts the last two Januarys. So much fun in WI to have to drive 2 hours one way. Weather just isn't consistent here. Nor is health this time of year. G is pretty sick with a head cold, and I think we'll be skipping this weeks casting due to weather AND sickness.

I've been meaning to write more consistently here, but I find myself not accomplishing this goal. I haven't made any resolutions this year, but maybe I should. One can make resolutions any time of the year, right?!

Terrific Twos

It's obvious the child is entering that "Terrific" Two phase. It can be terrible for the parent, and tough for the child, but all in all it's a terrific phase. I mean, every day, despite much frustration, tantrums, irritation, it seems there is this energy, this desire to learn, to destroy, to shout, to exclaim. It's encouraging to see development and progress for mom and dad despite the ringing ears. As this photo demonstrates, the kid was not happy. It wasn't because he wanted to be out of the corn, he wanted to do it on his own, and he was furious I had pulled him in there. Once I put him on the ground, he crawled in and was as happy as could be.

G is definitely emerging as a personality. As a baby, he was this silent, watchful, peaceful buddha figure. He didn't use much energy to cry or complain, and he was a huge baby because of it. He is still very watchful, but he makes noise with the rest of 'em! I remember telling people who would often tell me what a fantastic, sweet baby he was, that I thought the twos would be challenging. I figured he was biding his time. And, it was painfully obvious to me that he was taking notes with how watchful he was!

Number Three was my most challenging in this phase, and I must admit, G isn't quite like that or even like my nephew. He doesn't always have the physical capabilities to get into stuff, climb counters, open fridge doors of fish in the toilet, but his personality is definitely that of a toddler entering that two-year-old phase. He expects, no demands, that I allow him these privileges and take him there right NOW! And the word NO to him is as if I've slapped him across the face and ripped his poor, wittle heart out

I love the challenge of this age because they want to learn so much. It's all about learning and discovering and figuring things out. There are days I can't keep up with it and get frustrated and act out like I'm two, but for the most part, I really don't mind the Twos.

With G, there is a different aspect that I find difficult to deal with. This would be the shunt. Again. I'm having to learn what his Two is like. I know what my other three kids were like, I know how they acted, but what is normal for him? What is excessively irritable? Where does one draw the line? What do you ignore and what do you pay attention to? It's a challenge, that's for sure, and I'm not sure I'm relishing it much. I feel on edge whenever he cries or screamz, especially if he sounds in pain. And of course, the smart kid has figured out if he cries, "Owie!" mommy is right there asking where it hurts. Boy, I'm going to have to work on that.

Overall, though, I'm enjoying the attitude from this kid. He's funny, smart, and ornery.

What's worse than dirty underwear?

The answer: dirty socks. I'm thinking of this because I'm packing. When G had his first shunt revision, hubby and I didn't pack anything when we went to the appointment. We live about two hours away from the hospital, so I'm not sure what we were thinking. G was admitted and had surgery that afternoon. It was a Monday, and we came home by Wednesday. I was able to survive the underwear, pants, shirt, but the socks were giving me heaves when I had to put them back on in the mornings. I shudder at the memory.

We've been through a few more unexpected surgeries since then, and I bring extra underwear, but I definitely overpack socks.

G has an appointment today for a CT scan. His behavior has changed, and we're thinking shunt. I hope I'm wrong.

The shadow of the shunt

This morning was G's last dose of antibiotics. He has a fever. I debate, I call, and we go. He was on amoxicillin, so I wouldn't have been surprised if it hadn't done the trick for the UTI we were trying to get rid of. It looks like it's just a virus, though.

I said to the doctor that I felt so paranoid bringing him in for just a virus. His comment was, "You need to be paranoid with him." He meant this in a reassuring way, and I took it that way.

I still feel paranoid, though. G is four months post-op for his shunt, and he's still at risk for shunt infection. He cleared for strep throat (his throat was red), his urine sample looked clear, so we're going with the virus. Unless something grows in the cultures. His blood count was good, though (11, 000), so as I run through all these things I feel calmer.

I feel like, though, I live under a shadow. The shadow of the shunt. The questions, the concerns, the potential issues. They are always there. I'm always trying to rule them out. Will I be able to breathe easier someday?

Quiet

Things have been quiet around here. I find myself worrying in the too quietness of it all! We've had doctor appointment after doctor appointment week after week, and May has been so quiet. G had his orthopedic appointment on the 2nd, and that's been it this month. I don't feel safe, I feel something looming in the future, and I hate that feeling. I want to just appreciate things for what they are rather than feeling watchful for every little thing. How does one work past that? I feel paranoid, and I don't care much for feeling that way.

The shunt has been THE issue this year, and I am having a hard time relaxing about it. Is it even possible for it to go an entire year without malfunctioning?? I know it's not only possible, but it happens for many people on a regular basis. Little things have been bugging me, though. A little head growth, bulging soft spot (intermittent), some "different" breathing that's hard to explain but there, a large bruise on his forehead from smacking it on the floor, veins seem darker (in my head, though?), and the other night he cried "owie" off and on for about an hour. He slept fine last night, though. This is why I feel paranoid. They are such little, subtle signs, probably easily explained away. I've been obsessively measuring his head again, and when I get like this, when this feeling doesn't go away, I hate to say it, but I haven't been wrong yet. The intuition with this kid is so strong!! I think he's teething to cloud the issue.

On a positive note, though, this kid is doing some exceptional things lately. Progress has been phenomonal, I think, and his PT has been happy with what he's doing. It's amazing when something clicks. He's been "dancing", and it is just adorable. I HAVE to capture it. He's also been becoming much more verbal and entertaining us with babble stories.

I have to let go of that worry. Even writing that, in my head, I hear, "but this...", "but that...", "you can't..." Worry doesn't want to let me go.

Shunt revisions

Tomorrow it will be a year ago that G had his second shunt revision. I've been working out in the garden the last couple days, and I was wondering why it kept popping into my thoughts. A year ago I was feeling so hopeful with promise and thoughts of getting gardening done. Life felt good. And concerns started creeping in. I ended up going in on a Friday with him and spending the weekend. His revision was on Monday, and we took him home on Wednesday. It seems so weird that it was only a year ago.

Thankfully, this year I don't feel as if anything shunt related is going on. Well, I still worry, and I check the signs, but he seems okay. His burr hole "soft spot" has been fuller but not tense.

It took a lot out of me, and I ended up not doing any gardening when I got home. I think I did a few annuals around the yard, but I didn't do anything special.

There is such a love/hate relationship with that thing. I love it because it's the reason he's still alive, but I hate it because of its frailty. Not even frailty really, but it is flawed. Shunts are as dependent on the person in some sense as the person is on them. G has had 7 operations on his brain, and he's not even two years old. It really freaks me out sometimes!! Most of the time, though, we go on our merry way. :) His shunt failures/malfunctions have occured due to tissue blockage and the gel incident.

Well, I am going to try and not worry about the shunt this week. It'll probably me more on my mind, though, I think.