Pity

This was posted on G's caringbridge page:

So I posted a link on Facebook today for www.curepity.org. G has frequent visits to Gillette and their site has this up. I found myself having to put it into practice today.

G has been playing with the neighbor girls a lot. They are both about his age, and they all play so well together. I heard him bawling and crying today, and I didn't know what was going on. Was he hurt? Mad? Why was he so upset? I ran outside to see what was going on, and he was furious because he wanted to ride bike. What do I do as a parent? Tell him he can't? Ugh... I felt so sad for him at that moment. I felt so sorry for him. I decided to put him on the bike and pushed him around until he got tired of it.

He was happy, and so was I! I know there are bikes he can use that are hand-propelled, and maybe I'll have to look into getting one. He was back on the ground playing, and all of a sudden he started yelling again, "Ahhhhh, I can't walk! I need to walk! I'm not too little!! Ahhhh, my legs are broken!"

Wow. He is such a verbal child. He's only three, and he expressed his frustration so well. Here's the thing, though, I have commented on how well he's doing this year getting around and didn't think he was that frustrated.

A little piece of my heart broke for my little one, but I know he'll triumph. The kid has determination and he'll figure it out. I'm not really talking about walking, but more about figuring things out and dealing with them. I know he will. I can't sit and feel sorry for him, but I can encourage and support him.

G went to a full afternoon of school yesterday! It sounds like he did wonderfully. When I picked him up, and we were heading home, I asked him what he thought of school. His reply, "It's a great school!"

We finally got his twister straps (and STILL no walker), and he isn't loving those. They sound horrible, but they're pretty basic. I plan on getting a picture, but right now, we'll just say he's not too cooperative.

After his MRI results, I feel so elated! And kind of lost! LOL When he had SO much going on, it seemed like that was the way it was going to be. Now, life with G is pretty low-key. When I had to fill out the paperwork for his MRI work up, the space for surgeries was way too small. It's always kind of sad to fill out all his surgeries, and he's only three.

What it looks like:
2005- 9/29- shunt placement/myelomeningocele closure, 12/13-bilateral clubfoot percutaneous tenotomies
2006- 1/9-shunt revision, 2/23-cystoscopy urethral stricture repair, 5/1-shunt revision
2007-1/12-shunt revision, 1/24-bilateral clubfoot percutaneous tenotomies, 1/30-shunt revision, 2/4-shunt replacement, 2/14-shunt revision
2008- 4/25 left clubfoot revision

It's tough to fit that in the space allotted.

As we approach April as our one year anniversary of being surgery-free, I think I can finally accept it. Now that we've been told TWO years for a follow-up, I feel like just maybe, yeah, we'll make it. For so long, not even realizing it, I was waiting for that other shoe to drop. I realize that it still can, but I'm not holding my breath anymore. Life without surgery after surgery feels kinda good. All the unknowns don't seem to be beating on my door so much.

An MRI,etc

G's appointment went well yesterday. I should really say appointmentS because the boy had several.

We arrived early at 9:00 am. He went NPO at 7:00 am, so it worked out well. I'm not sure about all the times, but it seems like they got things moving relatively quickly. His MRI was scheduled for 10:30, and it was started right at that time! He had a head CT before the MRI, and those kind of freak him out as he's had so many. He did SO well, though. He was sad, but he did remain still.

He charms the nurses like crazy. He's got so much wit and humor and makes the cutest faces. They did not want to poke him for the I.V. but, of course, it had to be done. He and I read a book while they tried to find some in his feet (no sensation), but the veins were too fragile and kept blowing out. He would look over the book to see what they were up to, and would start to get upset about them "hurting" his feet until I'd distract him and he'd forget all about it.
The I.V. ended up having to go in his hand. One of the nurses names was Rosie, and he really seemed to like her. They had a different nurse come in because they didn't want G to be mad at them. While they were poking about, G started yelling, "I get stickers! GET me stickers!" I felt so bad that it hurt, but I had to giggle at his demand in the midst of his pain. It went relatively fast (I'm sure not so much for him, but if he could remember a couple years ago...), and we took him in for the MRI.

Just like that he was out, looking like a peaceful little angel. Hubby and I headed downstairs for a candy bar and then back to the waiting room. He was in the recovery room within about 50 minutes.

Once G woke up, he was off and on a little loopy, and boy, he says funny things. He had a red popsicle and some apple juice. When the IV had to come out, he was so excited to get it out, until it had to be pulled out. The nurse asked if he could count to 10, and he said, "yes". She told him to start counting, and he said, "Ten." LOL

Afterward, we headed to the x-ray department, and G was amazingly cooperative. Usually, we have to help hold him still, but he would just stay in whatever position he was put in. He had about 6 taken, so very surprising to me he did so well!

We headed over to see the neurosurgeon's nurse practitioner, and she was pleased to report that all looked good!! Yay!! We won't need to return for two years to follow up!

So that was day, and the older kids got to go visit their cousins and aren't home yet.
We are so tired but oh so grateful for such a GOOD report.

Poor little G is sick. Nice, old-fashioned cold, and he's miserable. This morning he woke up and his eyes were glued shut. He was freaking out and crying that he couldn't see, and I think he made a comment about his eyes being gone. I got a warm washcloth and finally he was able to open them. His eyes got as wide as they could in their state, and he exclaimed, "I can see! I can see!"

It was so cute. His whites are a bit red streaked, so I'm pretty sure we're dealing with conjunctivitis. No PT today!

The temperature outside was about 30 below (F) this morning, not factoring in the windchill.

2008

2008 vs 2007. Quite a difference! G started 2007 out with four shunt revisions, rotavirus hospital stay, and the year went on with multiple UTIs and ear infections. My mother was also diagnosed with leukemia that year. But 2007 is gone, right? Why am I bringing it up? Because it's relevant to 2008, I guess. 2008 was as uneventful as 2007 was eventful. We had ONE surgery. A planned one at that! We had a couple scares where we thought something was going on with the shunt, but not this time... My mom is still on chemo but in remission, so the year 2008 rocked!

Why is it, though, when I reflect on 2008, I mostly think of 2007? I am so thankful this was a non-eventful year. There were things that went on, most assuredly, and not all of them were good, but overall, the year was a very good year. I'm a little shocked, actually, that it's 2009.

G is now three. He has taken steps in his walker. He is going to school sometimes and getting PT twice a week. He is here. One of the things that seems so far away is being told he wouldn't live. Living that first year of his life with bated breath, wondering if he'd be snatched away. Going through multiple surgeries and wondering if this, this is how it was going to always be. And then, here we are.

He may have things in his future, but I'm not dwelling on those. The here and now is that I have this fabulous three-year-old. He is G! He's fun, witty, smart, funny, ornery, and so full of personality.

Walkers, twister straps, waiting..

We are still waiting for G's walker. Thankfully, we have one through the school that is working well. He's been very stubborn with the PT, and I think he's in all his three-year-old glory when it comes to that. It's such a challenge figuring out how to discipline without giving him what he wants, which is to quit pt. So far, I've been encouraging to apologize after we are all done.

He's been taking steps in the walker! His therapist moves the walker, and he takes the steps. We need twister straps to give him more stability and endurance, but I'm thinking I have to call again to get the ball rolling. The holidays seem to have messed up our fairly timely clinic!

G likes to wheel around in his chair when we go places. Last week we forgot to put it in the van when we went to an event, and he was so irritated. He kept telling us to remember the chair next time. He tends to "run" while he's in it, so we're having to set some boundaries. He's way too good at stopping at will, so he thinks he's got it all figured out. I knew three was going to be a challenge!!

2008 was a really, really good year. No major hospital stays, only one surgery (planned), and overall good health. Soooooo different than 2007. My mom has been doing well with the chemo, and all of our kids have been relatively healthy this year. I have so much to be thankful!

I took G to school yesterday to participate in the classroom for about an hour. I left him rather than sticking around and observing because I knew he'd do better if I did. I wheeled him in, and he got down on the floor with the kids. As I left, I was totally tearing up. I couldn't believe how many emotions were swirling around as I exited the building. There was a sense of pride, that my little boy was growing up and didn't cry when I left, a sense of sadness for the same reasons, and a nice panicky sensation that my BABY was in school.

I walked over to my aunt's and we chatted and when I returned I sat and watched for about 15 minutes. G didn't see me come in, and he'd join in with the class sometimes, but mostly he watched the kids. They were so cute and so smart! Afterward, I asked him if he liked school, and he said, "yes" and said something about his friends. Awwwww... :)

I was a bit stressed over the weekend because G fell off a chair on Thursday. He hit his shunt, and HARD. I tried to put ice on, but he was very resistant to it. A few hours later, he had fluid all around the valve. I'm pretty sure it wasn't a goose egg because it was pretty soft. He didn't exhibit any other issues, so I've been waiting it out. I know those things are supposed to be pretty tough to damage. On Saturday, though, he fell on it again and bumped it pretty hard. :( I worried ALL weekend, but so far so good.

Three is obviously a bit more daredevil than two was. He has been climbing up onto all our chairs and climbing down on his own. I'm sure the table is next, but trust me, I'm not going to give him any ideas! Last Thursday, he dove out of his chair after something, and on Saturday he ventured down the stairs on his own. How do you maintain independence and caution??? He gets so angry if I help him (unless he asks), but this surge of independence is wreaking havoc on my hair color.

We went to a wedding this weekend. All the kids did well during the ceremony and afterward, G got in his chair and wheeled around outside. He was having a blast and showing off to no end.

I love the independence this grants him, and even the tantrums that come with that independence insistence are refreshing. What bothers me a little is how much attention he gets. People oooh and aaah over how cute he is, how fast he is, how clever he is, and I worry we're going to create a monster! LOL

At the reception, we didn't bring the chair in and he still went out on the dance floor. Most of the time people carried him, but when it was just the little kids out there he did some dancing of his own. All four of the kids danced up a storm, and they got so worn out, THEY asked to go home!

Things are actually quieting down a little. I'm not so worried about the shunt after the CT and appointments have slowed down. Therapy starts back up this week, and I'm excited to see what things we'll be working with the new therapists.

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???