wheels and dreams

G's wheels are in!! I'm so excited to be getting the wheelchair, and I think it's a very timely arrival with the clubfoot surgery and all!

I had a dream last night. G took four steps, and I was just ecstatic. I can still picture his bare little feet taking those four steps. In my dream I shared it with everyone. His feet were straight, his ankles strong, his balance there, and it was such a moment in the dream! I would fret and stew and think I was having issues with him not being able to walk, but I've had some strange dreams this week. LOL There was this one with four guys with no shirts on....

Anyway, daylight breaks and the dream of G's steps is still with me. I was watching him get around yesterday, and he has his stumbling blocks, but it is amazing how he's figured things out. His arms are his legs, and he knows how to use them. I felt a bit melancholy watching him struggle to keep up with his siblings, but I felt triumphant seeing the ground he's gained. He loves his little homemade chair grandpa made for him, and I love the freedom, the glee that crosses his face, when he's in it. I had him outside in it yesterday, and he wasn't able to really get on the grass with it, but he was able to get around so much faster on the sidewalk. I do think that when all the snow melts and the grass isn't mush he'll be able to get onto the grass. As long as we keep it mowed and pinecones picked up!

The differences

My daughter was born with a left clubfoot in 1999. She was facing surgery at seven months, and I found out about the Ponseti method and its success rate prior to that. I was on a couple parenting and support boards at the time, and I was urged to call Dr. Ponseti, who was still treating kids at 86 years old. The man himself called me back, and a week later we were in Iowa. R responded wonderfully to the manipulation and casting and needed only a percutaneous heel cord tenotomy, a minor in-office procedure, and three weeks of casting after that. She wore a brace for the next couple of years, and we've had our ups and downs, but overall, it was successful.

My next two kids didn't have talipes equinovarus, but I knew deep down when I became pregnant with number four, he would have clubfeet. I don't know why I knew this, but I just did. When I had the ultrasound that told us he'd have clubfeet associated with spina bifida, I realized I was WAY out of my league. Especially when I saw them. They were so different than R's. It wasn't just the feet, but the entire legs were affected.

While I was pregnant with G, we contacted Dr. P about a referral in our area. We felt that going to Iowa weekly was a bit too much for our family of six, especially with all the other issues. The feet were really the least of our worries. Dr. P found us a doctor, and we met with him at around 30 weeks. He was wonderful and helped us understand spina bifida so much.

G's feet are nothing like R's foot. She's not had a regression, and he's on regression number three or four or something like that. He's had about 30 casts, and he's going into more shortly. We went to see Dr. Ponseti last year, and he had amazing results. G's feet responded fabulously to Dr. P's hands, but several weeks after being out of the casts, his heel was back up and his forefoot started adducting. Dr. Ponseti is 95, by the way, and still seeing kids. His 96th birthday is coming up in June.

G had two sets of tenotomies to bring his heels down. I am worried this surgery isn't going to stick either. That is my biggest fear. We will do this surgery, and it will go right back. Plus, he'll have scar tissue he didn't have before. I feel like I've been avoiding this surgery for NINE years (how old my daughter is), and here we are. Yikes.

It's hard for me to be here. It's tough to say he's having clubfoot surgery in two weeks. I think, though, we're doing the right thing. I want my boy to have the opportunity to walk, or even just to avoid skin breakdown from ill-fitting AFOs. This surgery could be the one to make a difference for him. I know if I sat and thought this long and hard about any of his shunt surgeries, I probably wouldn't have wanted to go through with those either. They HAD to be done. There wasn't a choice. Maybe that's how I need to approach this surgery. I have too much time to think about it! LOL

Verbal

This kid just never ceases to amaze me! He's just become incredibly verbal this past month where we have conversations. One of the things that really tickles me is he copies everything that's said. I like to use big words just to hear him try to say it. :)

Tonight, at bedtime, he just gazed at me, gave me a few kisses, and drifted off to sleep. What a sweet, precious boy.

scheduled

We have G's clubfoot surgery scheduled. April 25. I am feeling anxious about it, and I think the biggest reason for that is I have time to prepare. His shunt surgeries were stressful, no doubt, but I didn't have a lot of time to get ready. I just had to go ahead with it.

G STILL doesn't have a wheelchair, and we STILL haven't heard anything either way- approved or denied. He's getting around in a wheelchair my dad made him, and it is stinkin' adorable. He's also been cruising along the couch!! This is big stuff. Of course, he'll have his surgery and that'll set him back for a bit, but it will also help him in the long run.

It's been so busy, but it's also been nothing major, so all is well. :)

Where does time go?

I cannot believe we're approaching March so quickly! We've had a bout of sickness, going to weekly cast visits, birthdays, etc. It seems like I've been really busy, but I don't think I've been as busy as I've felt. G is out of his casts. For now. I am not sure what the course of action is going to be today because his left ankle is swollen and is hot. I'm worried he may have a stress fracture since he was casted for so long and his bones are probably quite brittle. He doesn't seem to be experiencing any pain, but that wouldn't be unusual since he has less sensation.

We have a brain/spine/scoliosis MRI coming up next Thursday. We'll be checking to see if his syrinx has remained stable or gotten larger. Tethered cord is also a concern, so that'll be addressed. Hopefully, the brain MRI shows things to be stable there.

That being said, we've made it a year without a shunt revision!!! February 14 marked the day. It's odd, but it just felt different to make it past that day and realize, yes, we made it an entire year. We really, truly did. We've had our scares/concerns throughout the year, but that scar has had a year to heal. :) I now know and understand (well, kinda) the nature of the shunt, and I'm aware there may be another revision (or more) in the future, but we'll take any small victory we can.

Interestingly enough, one of my major concerns when he was going through all these revisions was how it would it affect him developmentally. We were told recently he wasn't showing any developmental delays, was quite age appropriate other than physically, and he probably won't be eligible for school therapy once he's out of the birth to three program.

G is almost two-and-a-half. Where does time go???

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?!

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. :)

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!!!"

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.

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.

Therapy

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!

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. :)

Obviously, I'm no professional photographer

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

What?

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.

*sigh*

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

I think sleep would be helpful, too.

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.

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.

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.