Sheesh! I am so delayed on updating! G's evaluation went well. He did qualify for school on physical disability alone, but he won't be attending school yet. He is receiving at-home physical therapy because the bus ride would be as long as the school day! Which is about 3 1/2 hours, we figure. He can't sit that long due to his breakdown issues and because he's only three. I'm satisfied with the set up for now, and the teacher and the PT will each come out once a week.

Also, last week we went to the neurosurgeon and G had a CT and shunt series. All checked out well, and I'm very thankful for that. We also headed to IA for a checkup for his clubfeet, and that appointment also went well. It was a symposium we attended for the Ponseti method, and my oldest and G showed off their feet. Afterward, there was a race for all the little ones that were there, and it was so much fun. Dr. Ponseti is 94 years old, and he was there with his beautiful wife. G went around and around the track in his wheelchair and participated in two of the races. It was wonderful seeing him go. Our biggest challenge recently is dealing with the temper tantrums that come with us guiding his chair. Let's just say, he doesn't appreciate any help. LOL Sorry, kiddo, but there are still rules to follow!

I will try to post pics soon and be more diligent about blogging!! I always have things I want to blog about, but I write it in my head and then, poof!, it's gone.

G had his school eval, and we'll find out on Wednesday if he qualifies. I'm nervous. On one hand, I want him to qualify but on the other, I don't. I've never sent any of my other kids to school before they turned five, so this is way different (as many other things have been, but still...)for me. What a big step for momma. LOL

Last week when the pt was here, G was so uncooperative. He's been rather difficult with me recently, too. It's tough when there are possible underlying factors. Is it his shunt or is it just being three? Everyone else wants to think it's just being three. Me? I'm not sure. But, I also don't feel like it couldn't be. It's always figuring out what's going on, and sometimes that gets so difficult. He's not three yet, by the way. That is one week away!! How is it possible this kid is approaching three so quickly??

We took G to the airshow to see the Blue Angels despite his aversion to loud noises. With his ears covered he did remarkably well. :)

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.

It's just G and me! The older three siblings are off to school. G keeps telling me he wants to go to school! He is being evaluated to see if he qualifies for the Early Learning Program. I should hear something soon. Hopefully.

G's endurance is getting better. He is able to stand for about 10 seconds, maybe 15. It doesn't sound like a whole lot when I write it, but it's progress, baby!

There are several kids about a year younger than G on a couple spina bifida boards I frequent, and they are walking. It's so hard to not compare and feel a little bummed. He IS progressing, and that's what I need to hold on to. I am so excited for the other little ones but a little sad that G is still working on standing. It's hard to try to not rush things. I know deep down he's doing very well and I'm proud of what he CAN do.

What's going on?

I really have no idea why I haven't been updating at all. Well, I guess, in a way, I do. I haven't felt like writing. I've avoided it as much as possible. Everything I try to say seems to require either too much or I just can't get it to come out the way I wish.

Things are going well. Remarkably well, really. G will hopefully be getting a walker soon. His endurance is still not quite there, but he is definitely progressing. How cool is that?? His shunt has been functioning, and we will be going to a *routine* neurosurgeon appointment in the fall. Wow! It seems weird to not be fretting about the shunt so much. The thought is always there, but I think that's the way it'll always be.

G's siblings are all three heading off to school next week. I'm not sure how he's going to handle it. He's going to be bored, no doubt! Mom will have to step up a little and play more. G will have PT once a week, so we will be setting that up soon with a different PT as he's going out of the birth to three program the end of September.

There's the pretty boring update. Oh, I almost forgot! G has a ramp that is absolutely beautiful! He didn't qualify for funding, but the labor was volunteered by a handful of AWESOME guys.

Progressing to the "finish line"

I took G to his ortho appointment last week, and was a little disappointed in the appearance of his foot. It was still swollen, so I think that had something to do with it. We were going to have him molded for AFOs, but decided to wait until this week. In about two weeks, I should have a lighter kid. LOL My shoulder isn't doing so well with this bout of casts.

G has been playing outside with his brother and sisters, and his favorite places to be are in the cozy coupe or in the dirt. He has a couple of tractors, and he plays and plays in the dirt. I get a little frustrated because he always gets left alone by the kids, but I'm not quite sure how to balance it.

I have more to post about but too many interruptions. I'll come back to it later. :)

post op

G's clubfoot surgery went smoothly, and he's sporting a neon green cast to his hip. We did decide to put a short-leg cast on the other foot that didn't have surgery. He was sooooooo bored in the room, but he did very well. I sure was glad to get home!

It is finally springtime. G is loving the outdoors, but it's been challenging. He wants to get down and play but it is limited to hard surfaces. We got his new wheelchair!!! He loves it, but the outside terrain is a litte difficult for him right now. He's getting around in the house, and is so excited to be able to see out the windows and the top of the tables and cupboards. He's all toddler now! LOL

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.