Thursday, December 13, 2007

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.

Wednesday, December 12, 2007

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.

Friday, December 07, 2007

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. :)

Saturday, September 22, 2007

The wheelchair

G got a loaner from the PT about a month ago, and it has been amazing how fast he's mastered the wheelchair. He's just so thrilled with it, and he asks to go in it every day. Today he climbed into it. Unfortunately, he's learned how to unbuckle himself and has taken a tumble out. That was before I knew he could unbuckle himself.

It's just a loaner, though, so it could leave any day. :( We are working on getting him his own, but it's such a long, drawn-out process. I hate the thought of him not having it because it is so important to him. He loves being higher and going fast. He's all about the wheels, that boy.

The walker, on the other hand, isn't nearly as thrilling to him. He gets very frustrated very fast that he can't move quicker. His awareness of his feet and legs and what they can do has increased, though, so I think at some point he will catch on. He gets mad because he's not moving fast enough, and he uses his arms to shake it, and yells, "I'M STUCK!!!"

Friday, September 21, 2007

In Love

Today is one of those days where I am positively absolutely in love with my little guy. Does anyone else know what I'm talking about? I look at G, and my heart feels like it's going to burst because I love him SO much. The little smiles, his profile, the way he moves his legs, everything about him is just so adorable and precious.

It has been a rough couple of weeks, and I feel a bit down today, but he's my little ray of sunshine.

Tuesday, September 11, 2007

I know

I haven't posted anything in a long time. A lot has been going on, most of it not related directly to G. He's been so healthy and thriving lately! We had a series of appointments in the last couple weeks and things are good. It's kind of weird.

My mom has been sick, though, and today we found out why. She has acute myelogenous leukemia. Cancer. She starts chemo today.

It is so scary. She is my mom. She is 52. It is fortunately in the early stages, and it sounds like she has a good chance to fight it. She survived septicemia in 2003, and that has much lower odds. It's so hard to grasp, though, and I hope I'm strong enough to be there for her. She's been there so much for me.

Tuesday, August 14, 2007


I cleaned of the piano recently, and G has been loving it while in his mobile stander! What a great incentive I had on my hands the whole while. I think he plays quite well, really.

He hasn't been enjoying PT much lately. He gets frustrated very quickly, and last week he threw a tantrum for quite awhile. He also has a walker, but he only lasts a few minutes in that. He is really excited about the mobile stander now that's he's figured out he can chase his brother around. G thinks it's quite amusing to run into people or things.

G has PT today, which I have a feeling will go okay, but not great. He's cutting some teeth, and they must be very annoying to him! He is usually quite even-tempered, but he's been impatient a lot lately. Two, I say!

Thursday, August 09, 2007

Burned Out

I think it has something to do with being summer, having all the kids home, being busy, and starting a new business (selling jewelry), but I've just felt burned out about posting. I haven't even been keeping up on reading all that well. If I sit down to the computer and try to spend any time on here, I am being harrassed to do a million other things.

G has been progressing wonderfully. His vocabulary is expanding, especially in the last two days. The kid says his version of "Chocolate", which is "Choc." He points out his ears, eyes, nose, and names them, and his animal noises are spot on.

G now has a walker. He's not impressed with it much. He's had a mobile stander for awhile, and he recently really caught on to how to maneuver it. He goes and goes so much while in it, he gets red-faced and breaks a sweat. The walker, though, needs to be controlled by his legs, and this isn't an easy feat. Being two (almost), he wants to go fast, and he knows his arms can accomplish this. He will tolerate the walker for a short while, though, so we'll take what we can get.

He has also learned how to get on and off the couch. Originally, he thought he was quite clever coming down face first, but he's now decided maybe mom was right, and he should do it feet first. The thing is, he can go face-first and not get hurt, but the potential is really, really there.

Ten years for hubby and I tomorrow. :)

Friday, July 20, 2007

Obviously, I'm no professional photographer

The pictures aren't in focus, but the kid is still cute. :)

Wednesday, July 18, 2007


I have plans, plans, plans to read and post and write, but my life. My life is so busy at the moment!! Eeeesh!

I forgot a PT appointment yesterday. It's been every Tuesday for almost two years. I have remembered to call and cancel during shunt revisions for pity's sake.


I hope things slow down, and I quit being so forgetful.

I think sleep would be helpful, too.

Sunday, July 15, 2007

Someone else's words

Today I read a message posted by someone on one of my email lists about life being like a big waiting room. Learning to wait is one of the hardest lessons as a little kid, but as an adult it's not a whole lot easier. Here I thought I had become a more patient individual, but I think I was wrong. I find myself going crazy somedays with this waiting game. I'm constantly questioning myself and sifting through what is paranoid and what is intuition. It's not so easy to tell. Intuition has been spot on in the past, but I'm starting to feel like I'm paranoid with our recent bout of stuff.

I feel like something isn't right. Tests are showing nothing is wrong. This is good, but why do I keep looking for something to be wrong? I don't want anything to be wrong. Or do I? I can't imagine why I would want something to be wrong, so I'm wondering if I'm just paranoid. Do I just ignore these feelings? Brush them aside? How does one cope with paranoia?

I don't want to become the parent who everyone stops listening to because they've cried wolf one too many times, but I don't want to be the person who ignores the obvious because they don't want to be perceived as overreactive. I've got myself in a quandary, don't I???

Anyway, a lot of this is due to just feeling deep down something is going on, but testing is showing nothing. I absolutely abhor the idea of putting him through unnecessary testing, so I've decided I've got to just let it go and believe and trust that if something IS going on, we'll catch it on time. G had his ophthalmologist appointment on Wednesday, and his optic nerve showed no change. We return in eight weeks to continue monitoring and making sure it has no change or gets better.

On another note, I'm a bit excited about progress in the equipment department. On Thursday, G and I went with his regular PT to see another physical therapist about his mobile stander. We were given the mobile stander because it was going to be thrown, but it just wasn't working. The other PT knew how to adjust it, and we now have a functioning stander. We talked about getting wheels and a walker, and it looks like it will be happening soon, hopefully. I'm hoping G is able to gain speed and mobility.

Friday, July 06, 2007

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.

Tuesday, July 03, 2007

A little thing called a bath

G hasn't had many baths in his lifetime. He's 21 months, and he had 21 casts off and on to correct his little feet. Many a sponge bath was had. He has had some baths, but he's been terrified of them, and I decided to not force it. Therefore, it's been awhile since he's had a bath. I've been having him wash his hands and splash and play in the sink a bit, and I have him watch the other kids bathe. He hasn't minded being splashed recently, so I decided it was time to give it a try again.

I put G in the bath chair in the tub with his brother a few nights ago, and at first he cried, but then I splashed a bit of water, and it tickled his fancy, I guess. He was happy and content to play, and he cried when I took him out.

I find this so exciting that he finally enjoys a bath. No more screaming and trembling from him and no more feeling like I'm torturing my kid.

Another thing he's been finding enjoyment in is Blue's Clues. None of my other kids have been suckered into a show like this. He will yell, "Blue clue!! Blue clue!!" while we are watching a show, and he's quite persistent about it. Today he signed "please." It's kind of cute, and it's very, very helpful for bedtime. Getting him ready for bed takes about a half hour, so it's been nice to not have him screaming as I dress him, change his diaper, put his braces on, and give him medications. I think it's taking less than a half hour because we're not engaged in a battle anymore. Thank you, Blue, Steve, and sometimes Joe.

Tuesday, June 26, 2007

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.

Thursday, June 21, 2007

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?

Tuesday, June 19, 2007


I've never been much of a worrier. I'm the laid-back mama who lets my kids play, who lets her kids develop at their pace. I always have a watchful eye, but I try not to smother.

Then along came G, and I've become that mother. The one you talk to who always thinks something is wrong with her child.

I see this about myself, and I don't know what to do. I don't particularly like to think I'm a worrywart or paranoid. I want to be calm and relaxed, but his recent history has warped my perspective.

What I'm most afraid of, though, is being dismissed by the medical community as THAT mother. So far, my record is pretty good in knowing when something was wrong. I'm always questioning myself, though. Is something wrong? Am I overreacting? Over and over I do this, and I try not to make a call unless I'm sure. Reading through some of the medical blogs only reinforces this doubt in myself. I don't want to be perceived as an overanxious parent caught up in having something wrong with her child. I don't want to be perceived as stupid or ignorant.

My latest concern has been tethered cord. I find myself looking for the signs, and I'm finding some. Every little thing that occurs, that is different, that "could" be something, is always, always about the shunt. G's been napping more and sleeping a long time. This could be attributed to a number of things. But there's this "but", and it is so hard to take things at face value. I hate losing that, I hate not being able to appreciate more sleep without that "maybe" surfacing. The one that I haven't spoken out loud because I KNOW it's silly is whether he's laughing too much. Seriously.

Do I seem officially over the top now on the worry factor? He giggles and giggles about something, and I honestly have been concerned that he's laughing too much. Worried that somehow his brain is being affected by pressure causing him to giggle incessantly. Now, honestly, why can't I just enjoy it? I do enjoy it, and I always end up laughing a long, but there's this cruel thought in the back of my head going, "I hope this is okay. I hope this doesn't mean anything serious."

Okay, maybe writing that out was a good thing. I'm giggling to myself now at how ludicrous it sounds.

It's so strange for me to worry this much. Worry isn't a good thing. It doesn't solve anything, and it only causes stress. And stress ain't no good. It gives me a big belly.

Monday, June 18, 2007

Musings on doctors

I've been attempting to write a post for several days now, but with four kids at home I have CONSTANT interruptions and lose my train of thought. I compose coherent essays while going to sleep at night, but when I sit down to write them during time at the computer, things sound fragmented.

I have several posts mulling in my head about doctors, challenges, perceptions, accomplishments, you know, things like that.

I will attempt to post something today despite the interruptions that frequently occur.

For us, since G was born, we have encountered quite a few doctors. Even before G was born, I guess. Once we found out about the spina bifida, we were sent to a group of perinatologists, and they thought it was brilliant if you saw each and every one of them. I hated that. How do you get comfortable with who is attending your birth? You don't. You don't know who will be there, and they think if you meet each of their doctor's at least once, somehow they'll remember you at your birth. Or you'll be more comfortable since you met this doctor. Or something. It's beside the point, really. My intention for this isn't about that.

At each visit, I had a lot of questions, and I wrote them down in this small notebook I purchased. I referred to it as my Brain because it contained names, addresses, pertinent questions, important answers, and it did the work for me to remember everything I couldn't at that time. Once G was born, I continued using this notebook and bought a new one in January. It's been invaluable.

One of the main questions I had at this time was "What can I expect?" Initially, when we were given a diagnosis, it wasn't correct. It was believed he would die due to his brain malformation. When we saw the perinatologist after an agonizing ultrasound, he said, "Oh no, it's just spina bifida." We were given a pamphlet and some other reading material, and we went home with our minds swirling. I read the handouts, I read stories online, and heard some stories from others about someone they knew with spina bifida.

What I wanted to know, though, what can I expect from this baby, my baby? What will he be able to do? How long will he live? Will he be able to walk? What about his bladder and bowels? What about the shunt? Will he be brain-damaged? How much? Will I be able to breastfeed? What is he going to be like? Will he look funny? Scary? I mostly focused on the birth plan after awhile because contemplating these questions and the possible answers were tough to deal with.

I remember we spoke to the neonatologist before G was born, and the answers he gave were vague and didn't really answer much. Basically, it came down to each baby with spina bifida is individual. The severity is different for each one. My baby's lesion was lumbar 4ish, and it was probable he'd walk, but it wasn't promised. He could have severe hydro and be mentally handicapped, or he could not have hydro at all. The range is wide for spina bifida babies.

It was tough to accept that we wouldn't have definite answers, but I decided I had to. After he was born, the doctors we've seen, the neurosurgeon, urologist, orthopedic, haven't given us false hope. They haven't given us devastation either. They've presented us with information and caring, of which I'm much appreciative. They haven't once said, "Oh, he won't be able to do this or do that." or "He'll have nothing wrong! He'll be able to walk!" They've told us clearly, They Don't Know.

In some ways, it was hard to accept this answer of I Don't Know, but as time has gone on, it's been okay. They were right. They don't know what my son will or won't be able to do. They have an idea, I'm sure, but as one told us, he didn't offer that kind of speculation anymore because he's been proven wrong more than once. I appreciate that. There's the knowledge of what he can potentially do/cannot do in regards to his lesion level, but nobody's stuck him in that box.

I feel that we've had very positive experiences with G's doctors so far, and I'm very thankful. This isn't to say we haven't had negative experiences because we have, but his main team has been excellent.

Saturday, June 16, 2007


It's been very hot and muggy here recently. I thrive in it, but G is on medication that inhibits his ability to sweat and puts him in danger of overheating, so to speak. He flushes up even when it's not this hot.

On Thursday, my mom, sister, nephew, G and I went to town. We ended up going to a few garage sales, but sis and I didn't feel like taking the toddlers in and out of their carseats, so we chatted in the car. Afterward, we went to a bakery to get cookies (can I say YUMMY?? I'm all about making my own, but these were delicious), and as we walk in the clerk commented on my G's "sunburn." I didn't correct him that he was flushed, but he went on about it a little.

We ordered our cookies, and he brought it up again, saying something about keeping little ones out of the sun. I made a comment about him being flushed by the heat, but I didn't feel like an explanation was necessary at this point. While we were paying and saying goodbye, he said, "Keep the little one out of the sun!"

I finally said, "He doesn't have sunburn. He's on medication that causes him to flush."


I'm not sure what's the correct thing to do in these circumstances. Sometimes I feel like I overshare and sometimes I don't feel like giving all the information. The clerk wasn't rude, and I appreciate his concern.

Thursday, June 14, 2007

Not finding time

Well, it is summer, but I think it'll slow down a bit after this week. The kids have been going to Bible school near my parent's, so we've been hanging out there. It's been nice, but I feel like I'm going, going, going.

G had an ophthalmologist appointment Thursday, and of course, it came with drama. His optic nerve was swollen, and we had to head over to the neurosurgeon for a CT scan and consult. We'll be going back in a few weeks to see if it's resolved. It's possible it is just that way, but it's also possible it's indicating pressure. My gut is telling me he's okay shunt-wise. A few weeks ago, I didn't feel that way, though, and I wonder if he had a partial blockage that flushed out.

The shunt is such a "thing" all the time. It sounds like it can be such a non-issue for some people. Not us, I guess!

Monday, June 04, 2007

He's not Spina Bifida

In one of my groups, we had a new parent join, and another parent gave her the advice that this isn't spina bifida you are expecting, it's a baby. She told her to enjoy the pregnancy and focus on the fact she has a baby coming.

I remember receiving that advice myself not too long ago. Well, almost two years ago! At the time, I yelled at the monitor, "HOW???", but it was the best piece of advice I received. At first, I was consumed with finding out information, uncertainties, concerns, all that good stuff when you get a diagnosis such as it's "just spina bifida."

But then it shifted. I decided to enjoy the pregnancy, I decided to embrace the baby, and come what may. Sure, each doctor's appointment brought issues to the forefront, but I resolved to have my moment and move forward.

I did have a good pregnancy. I was pregnant in the summer, he wasn't due until the end of September, and I loved it. I loved the clothes I was able to wear (sooooooo cute), I loved that I wasn't itchy (winter pregnancy gave me dry skin), and despite being diagnosed with gestational diabetes, I felt great.

When we were given the diagnosis that he had spina bifida at around 24-25 weeks, I hadn't felt him move much. He started going crazy then. At first, I was upset. It was bittersweet, but it eventually became reassuring.

When people would ask the normal pregnancy questions, it was difficult to not answer, "My baby has spina bifida." There was this sense of that was what he was, if that makes sense. He became different with that diagnosis, and I had to work past it. Even when he was a newborn, I still associated him with spina bifida. He's not spina bifida, though, he's a baby, a toddler, a person. I think he'll get this tag a lot as he gets older. He'll be "that kid with spina bifida", but to his mother, he'll be her son.

Saturday, June 02, 2007


When G was born, it was hard to imagine what his feet would look like. I knew he'd have clubfeet before the ultrasound. When I found out he did have clubfeet amidst the other issues, it was almost reassuring. It was something I was familiar with. Our oldest had been born with a clubfoot, and we'd been there, done that.

At birth, though, the sight of his feet and legs shocked me. He didn't have "just" clubfeet, and it was very apparent. I remember when my daughter was born, and I couldn't imagine how they could fix her foot to be straight. It happened (quite nicely, I might add), and I naively thought it would be just as "easy" for G. When he was lying in the NICU, and his little legs lay there, I had the same thoughts, the ones I wasn't expecting to have because, hey, I've already done this! How would they possible straighten and appear "normal"??

It did take a lot of casts (21), but his feet really do look good. He's had tenotomies, but he hasn't had to have major surgery on them. Perhaps it's in the future, but for now, they are straight and beautiful. It is such a small victory avoiding that one surgery. There was a time where I gave up and felt "doomed" to have the surgery. I remember thinking, "What's one more surgery?", and I can't believe I ever thought that, but I did.

Thursday, May 31, 2007

That feeling of isolation

Sometimes, it just hits you, that feeling that no one listens or understands. While I know that's not true, sometimes it feels like it. It's when it's the people you think are closest to you, seem the most distant.

Yesterday, I had a conversation with my sister, and I exited the conversation feeling so slighted. During the hospital stays in January and February I felt very alone. I was two hours away from everybody, and their lives went on while I cared for a crying, in pain baby who endured more pokes and stabs than I would have been able to. It was hard.

My sister, I thought, had some insight into that. We've discussed it, I've tried to convey some of the stuff that went on and how I felt. I got off the phone yesterday feeling like I've never been heard. As if I've been talking to myself.

It's not all about me and how I feel. She and I have conversations about her and her frustrations, feelings, etc.

Yesterday, though, she was talking about her youngest and being concerned he might have adenoid problems. She said she couldn't put him through a surgery for his tonsils because she did that with her oldest, and it was so hard. I responded that my view on surgery is a bit skewed (I certainly don't advocate surgery unless it is needed, but the Big Dealness of it hasn't lessened exactly, but certain surgeries seem like bigger deals than others, if that makes sense), and that's all the further I got. She responded, "Just IMAGINE seeing your baby in pain! Imagine yourself having the sorest throat ever and imagine seeing your baby go through that."

I could not even respond to that. It's not like she's just some person of the street who heard our story for the first time and perhaps forgot some of the details. It's not like she's even an acquaintance who knows us and of our story. She's my SISTER. I talk to her almost every day.

Can I possibly imagine, can I, what it's like to see my baby go through pain? Can I? He had four neurosurgeries in the span of one month, and my sense of normal is a bit skewed. I held my poor little baby down for I.V. lines to be placed, for blood to be drawn, for shunt taps to be done, and I watched him go off to surgery after being informed of all the risks time after time.

Having tonsils removed is scary. I don't want my nephews to go through that either, but if they have to, they have to, right? I tend to be pragmatic about our situation and not fly into a tither every time he's had surgery, so I'm not going to be overwhelmingly dramatic at the thought of a "potential" surgery that may or may not occur. It doesn't mean I don't care, it doesn't mean it isn't a big deal, but when your son's brain has been tampered with as much as mine has your perception tends to be a bit different.

I wasn't trying to minimalize her situation, and honestly, I didn't say a whole lot. I pretty much kept my mouth shut other than to say as far as surgeries go, her older son's did go really well, with no complications, and that if she did have to go through it again, she would know what to expect.

I'm not sure exactly why she thinks I can't imagine what it would be like to see my child recover from surgery. Am I being overly sensitive or was she insensitive?

*sigh* It's just one of those days. I'll move on and get over it.

Friday, May 25, 2007

Getting around

This isn't his most efficient way of getting places, but he likes to use it when he welcomes daddy home or he just has a short distance to go. Those little power arms are so wonderful to see again. After his surgeries in January and February, his arms looked so frail.
I also am so happy with his feet. We've gone through a lot of casting for those feet, and I'm so pleased they are looking so good. When he came out of his casts after all his shunt surgeries, his legs looked so limp and his feet so floppy. They seemed to want to immediately turn back in. Once he regained his strength and then starting bearing some weight, I've noticed a big difference.
I'll be so pleased and happy if he walks, but if he doesn't I don't think I'll be disappointed. One doctor made the comment that if you can't walk, you can still run a boardroom, and that's really stuck with me. I'll do my best to support G on his journey. If he walks, I will be thrilled. If he wheels, I'll be thrilled.
So many people put such an emphasis on his walking, and it's kind of weird to me that it's such a big deal to them. I've said many times the likelihood that he'll probably do both walking/wheeling is very high, but they are so dismissive of the wheeling aspect. I don't think they understand how weak his legs are and how much effort he has to put into using them.
I really think he probably will walk. And that's a great thing. I think, though, that he'll also use a wheelchair. That doesn't make me faithless. It doesn't make me a pessimist. It doesn't even make me a realist. I'm not accepting a negative reality because, really, what's so wrong with him having to use a wheelchair? I'll encourage the kid as much as I can. But I sense, I feel, this judgment when I say he'll probably do both. As if I'm somehow giving him limitations. I honestly believe he'll be limited if my focus is on just getting him to walk.

Thursday, May 24, 2007

Two years ago

Two years ago I was pregnant with G. I had seen my midwife once as I was planning a homebirth, but my ob/gyn I normally saw wouldn't see me. I was very sick at 11-13 weeks. I remember calling and asking to be seen, and they said they couldn't see me for over a month. I knew at that moment I wouldn't be dealing with them.

Being I was going to have a homebirth, I wasn't going to have an ultrasound unless medically indicated. This was going to be a hands-off kind of birth. I felt very strongly that I needed to have an u/s, though, because I felt like something was not right, and I talked to my husband's cousin who is an u/s tech. She agreed to do the u/s, but it wouldn't be an official one. I was okay with that.

I remember being late for the appointment. "Marilyn" was waiting for me at the entrance of the hospital (a very small, rural hospital), and we went back. She asked me if it was okay if someone observed, and I said that was fine. She did the u/s, showing the other girl, and explaining things. She didn't take very long, though, and she kind of rushed through it, I thought. Afterward, as we were talking in the parking lot and saying goodbye, Marilyn said she had to mention something.

I felt this sense of, "Okay, here it comes, I KNEW it." She told me the ventricles were enlarged. Ventricles? What was she talking about? I noted the words in my head as she continued talking. I was around 19-20 weeks at the time, and she said that sometimes they resolve in a couple of weeks. Her recommendation was to have an official ultrasound in a couple of weeks by a different tech and read by the radiologist. She told me not to worry, but she definitely recommended I be seen again. I thanked her and told her I appreciated her taking the time to do this for me.

At home, I researched on the internet. At first, I didn't type in ventricles, but vesicles. When I did type in ventricles and got more information as to what it might entail, I prayed. Things mentioned were hydrocephalus, spina bifida, other problems that resulted in death, and many even mentioned it could signify nothing.

I found a different doctor, since my ob/gyn wasn't receptive to working with me. I was still clinging to the hope that I would be having a homebirth. I met with Dr. A, and I really, really liked her. She was perfect, and if I ended up having to deliver at the hospital, the facilities were acceptable and comfortable. She also felt the enlarged ventricles could resolve on their own, and we scheduled an ultrasound that would be about three weeks from the first one. Dr. A also mentioned she'd be on vacation at that time, but she wanted to know if it would be alright if I didn't get the results until later. I was fine with that. I left that day, feeling calm and reassured. I was leaving my fears in God's hands, and if something was wrong, there was nothing that I could do about it. I didn't stress or worry those two weeks. I really didn't. I did my initial homework, but I let all of it go. I trusted in God, but I knew, I just knew, that something was not right.

It's weird to think that it was two years ago. It truly seems like it was a few months ago we were dealing with the knowledge. I don't remember the date of that u/s, but I remember it was in May. I do remember when we got the results of the second u/s. That was June 15.

Wednesday, May 23, 2007


There were so many things I looked forward to with my last baby. I couldn't wait to buy him/her baby shoes. With my older kids I hadn't heard about Robeez or Bobux, and I couldn't wait to purchase some. I looked forward to enjoying and relishing so many different things. Homebirth, slings, being that ultra-relaxed fourth time mom and enjoying every minute with my last baby.

I don't mourn often the things that changed when we received his diagnosis, but the shoes are the one that cuts the most for some reason. My nephew was born the same time as G, and he has some of the cutest shoes ever. I missed out on shoes with my oldest, who also had clubfoot. At least, when she turned a year, her shoes could go straight on her feet. With G, we're always having to figure something out that will go over the AFOs. The robeez did fit at one point, but they don't anymore.

It's one of those things. Just one of those tiny losses that cut deeper than they should.

My sister has helped find some cool footwear for my kid, and I love them (and her), but I would so love to just buy the shoes I want to.

So many people comment on the cuteness of the AFOs, but I have a hard time with the appearance sometimes. We've gotten the buses and trucks, or whatever the design is, but they mostly seem awkward and hot-looking to me. I don't mind them in the winter, but in the summer I want to leave them off and let his toes be bare. He needs the AFOs for stability and maintaining correction for his clubfeet. I don't want to lose that correction (we went through 21 casts, two tenotomies, and 7 hour trips one way for the last five), and I don't want him to fracture his leg again. So, they aren't optional.

I miss bare toes, I miss cute socks, I miss adorable shoes. It's just one of the little things that seems big sometimes.

Monday, May 21, 2007


This weekend we went to a park for a party, and G and siblings had a blast playing. G was determined to crawl up the steps over and over, and he did it. I was so proud and amazed at the strength his upper body has. He even went down the slide with my brother's help and me at he end. The first time he looked scared, but after that, it was belly laughs.

Other kids were there, and about four to five of them were his age, and it is always a little jolting to see where they're at as opposed to where he's at. It's impossible to not notice.

He's my incredible G, and he is who he is. I love him, I support him, I encourage him, I embrace him, I accept him, and I am truly blessed.

Thursday, May 17, 2007


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.

Thursday, May 10, 2007

One day at a time

When G was born my sisters both had babies. My niece turned two yesterday, and my nephew is 11 days older than G. I also have two cousins who had babies, one in July before G was born and one in January after he was born.

There's a large group of kids the same age. And here's my little boy. Everybody says how good he is doing and how good he looks, and it's true. He's pretty amazing.

But what he's starting to do, they've all been doing for a long time. What is so wonderful to me, is these parents. They share in my excitement of his achievements. He's 19 months old, and he's just learned to stand. All of their toddlers are running around, but they are SO excited to see him achieve something that came with ease to their little ones. That means a lot to me.

I'm thankful he's my last baby rather than my first. I find I'm pretty relaxed, and I'm actually happy he's kinda staying a "baby". He's definitely a toddler in attitude, but he doesn't get into near as much stuff as my nephew. LOL But it also saddens me. That little ache in my heart when I see my nephew trying to get G to stand up. Or seeing these other little toddlers running while my toddler looks longingly after them. He can't crawl fast enough to keep up. My heart hurts when his little fingers get stepped on or he hurts his hand on something sharp on the ground.

Recently, a few other people I know have had babies that are very early (around 25 weeks gestation). I feel so deeply for them. For the struggles they are facing, for the fears they are facing, for the realities they are facing, for the future they are worrying about, and for all those things that hit you when you bring a child into the world. It's hard enough worrying about a "normal" child, but when you have one with challenges you don't know what to think. You hear "Take one day at a time..." an awful lot, and it is truly one of the best pieces of advice to recieve, but to actually put into practice... Easier said than done.

Before G was born, and we found out he had spina bifida, hydrocephalus, bilateral clubfeet, and he would have bowel/bladder issues, the future seemed to collapse. It was impossible to not feel like my entire future was changed. It was hard to not think about those changes and how my life would forever be affected. It was a Big Deal. I thought and felt ways I never imagined I'd feel. I wished things that now make me sad. But it all had to be done. It was part of a process. It was grief over losing my future that I envisioned. It was grief as expectations were pronounced dead. It was grief as dreams were lost. And then that process shifted. Perspective changed. Acceptance, dealing with it, joy returned.

One day at a time. It is valuable advice. Sometimes, though, it's impossible to do. Sometimes it's the only thing that'll get you from one day to the next.

I do now take one day at a time. I worry about G's future now and then, but it's not an overwhelming worry. When we're going through a crisis, the only way I can survive without dissolving into a helpless mass of tears is to resolutely take it One Day at a Time. Sometimes it is one hour at a time. If I look too far ahead, if I allow those fears and worries to creep in, I become overwhelmed and incapable of facing the situation.

As he's gotten older, as we've faced some major, scary surgeries, and made it through, the future doesn't seem so frightening. I made it through some heavy stuff, and I can do it again.

Monday, April 30, 2007

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.

Friday, April 20, 2007

Gone and home again

One of the things about a hospital stay is life goes on for other people, but it halts and shifts for me. I come home, my house is still the way I left it, my kids are missing me, and life resumes, but I'm behind. I've missed something. I feel so alienated after a hospital stay.

G was in the hospital Monday and Tuesday night. He is still not himself, and today I'm getting worried. Monday he had these diarrhea diapers that were just water, and he had about 6 of them on the way home. I was cloth diapering, and it went surprisingly well and smoothly, but I can't say it was the most ideal circumstances in a five hour car trip with four kids. Fortunately, they didn't stink, the diapers that is. We got home, and he had two more diapers full, and then he vomited all over me. Oh joy. So, then I went into "I think we have to call about this" mode, cleaned up the floor, took my clothes off, put on some fresh clothes, helped get the kids ready for bed, as G laid on the couch without moving. He looked lifeless, and I was really worried he was dehydrating fast.

After we got the other three kids to bed, hubby and I took G to our the ER. MIL stayed with the sleeping beauties. Long story short, G got an IV, some blood draws, and an overnight stay. The next day, he seemed to be doing better until the afternoon, and then he became lethargic, hard to waken, and he had a low-grade fever. We stayed another night, with another dose of antibiotics, and Wednesday we took him to Children's for a CT and to see the neurosurgeon. It looked good, so we left very relieved.

The diarrhea has continued, though, and yesterday and today, he just passes out. Today, he was sitting in the high chair, and fell asleep. I know this happens with kids after a long day, but it isn't sitting right with me. So, worry, worry. And, OF COURSE, it's the weekend!! It's always the weekend. I remember the days when I used to think TGIF, and now I'm praying we make it through the weekend.

Coming out of the hospital, and getting back to Life is just a surreal experience.

Friday, April 13, 2007

What exactly?

I've had a struggle figuring out what I want this blog to be about. I have so many "things" to write about, so then I choose not to write about them at all because I don't know where to start. I don't think I'm a great writer, but I like to write.

So, anyway, as I'm not getting off to a great start here trying to say what I want to say, I'm going to try and be coherent.

I've been reading blogs recently of micropreemies, kids with cerebral palsy, and other things. I have a caringbridge page for my son with spina bifida, and at first, I wasn't sure that was what I wanted to write about here. I think I present a "nice" version and more of an update thing over there, and I think I could write more here about the reality of dealing with spina bifida and the stuff that goes with it. I also have a livejournal that I write about stuff with him frequently, but I'm thinking now, this would be a good forum to write an account of the stuff we're dealing with.

I also have three other kids, and I might be sharing things about them here, also. This is their story, also.

So, I dunno. I don't know if I'm interesting enough to do this, and I feel a little awkward about baring my soul. We'll see where this goes, I guess.

Wednesday, April 11, 2007


Things have been settling down. No neurological stuff seems to be presenting itself recently, thank goodness. In fact, he seems to be thriving, growing and learning. January and February were so incredibly stressful, I'm not sure what to think about them. March and April have been busy but mundane.

Wednesday, February 21, 2007

A Summary of 2007 (so far)

It has been an incredibly insane year. It feels like is should be half over.

December 29, 2006 is pertinent enough to add to this summary, so I will. We headed to Iowa to cast Grant's clubfeet, and we took all the kids to spend a little time as a family. The oldest ended up going to the ER that Friday night because she sprained her ankle. We thought it was broken, and so did they until the x-rays showed no broken bones. Whew. But stressful! The rest of the weekend was great.

January 5, 2007 was another trip to Iowa for change of casts. We are seeing great progress. I'm a bit worried about Grant's behavior, though, and I've put in a call to the neurosurgeon. Wait and see.

January 12, 2007 was my mother's birthday. She was heading out of town, and we were supposed to head back to Iowa for a cast change. Change of plans due to a CT scan showing an odd, "cystic" area along his shunt tract. Grant had a shunt revision that revealed his ventricular catheter was completely blocked. For some reason, though, the fluid didn't accumulate in the ventricles but along the shunt tract, causing many comments on the unusual presentation of malfunction. We skipped Iowa. We headed home on the 14th.

I was very pissed at the nurse practitioner's dismissal of my concerns when I called on the 10th (her instincts told HER that his symptoms weren't shunt related), but it sucked to be validated, too.

January 19, 2007 we were back in Iowa for a cast change. We were concerned with the appearance with Grant's shunt area. It was very swollen, we had returned to have it looked at on the Tuesday before we headed to Iowa. The CT looked good, but the ortho liked the appearance of the swelling about as much as we did.

Then I got sick, and I was really sick. I was still worried about Grant's incision site being so swollen, and when I went to the doctor, I had her look at him, too. Wait and see.

January 26, 2007 we were in Iowa again. This time for tenotomies that were performed in the office. He had casts put on, and we were to have a three week break from travel.

I was still worried about the appearance of his incision area, and it seemed like it was becoming bigger. Phone calls made. Appoinment set for January 31.

January 29, 2007 was my father-in-law's birthday. The big 50! At 3 am in the morning, though, hubby and I were headed to the ER in Minnesota. Grant's incision started leaking, and he had vomited earlier.

January 30, 2007 was my oldest's 8th birthday. I was devastated to be gone. Grant had a shunt revision, and his ventricular catheter was blocked due to the gel that had been used to seal his dura expanding. It's something they've never had happen before. Lucky Grant. :( They'll no longer use that gel on him.

January 31, 2007 we thought we were leaving, but Grant vomited and started having severe diarrhea. We decided to stay and that night his incision began leaking again. The NS came in, reinforced the stitches (heartbreaking cries), and figured we'd probably be taking the shunt out. There was no leakage in the morning, though, and we went home February 2.

February 4, 2007 we returned to the ER. On Saturday morning, a day after being released, I noticed some leaking, put a call in, and was told to try and wait it out until Monday. No such luck. It started leaking a bunch on Sunday, so we headed to the ER. It was hubby's Grandpa's birthday and the Super Bowl. We didn't get to see Grandpa, but the Superbowl was on in the ER room. Yea. Way too many pokes for my baby. :(

February 5, 2007 was a shunt replacement. The old shunt valve and catheters were removed, and a new system was placed in a different spot. Surgery was longer, and recovery was really, really rough. There was an abdominal incision to go along with the head incisions, and Grant seemed so sore and uncomfortable. We went home on the 8th.

February 14, 2007 ended up being a pretty sucky Valentine's day. We headed to the ER on the 13th because of symptoms and leaking he started having over the weekend. His new shunt already needed a new revision. We came home on the 16th. His casts were taken off the 15th. We were scheduled to have that done on the 16th, but we couldn't make the trip to Iowa.

We're home now, and I hope we have no more revisions/replacements, etc. He has a few things going on, but I'll detail those later.