Ortho Visit

Back at clinic in June we discussed another surgery on her foot in the fall. Well, here we are. We met with doc today to confirm. Looks like it will be a 2.5-3hr surgery, splitting a long tendon on one side and transferring it to new places. Β He still isn’t sure if he will need to do any ‘bony surgery’. He doesn’t *think* he will, he says today, but he’s not certain. So that’s positive, at least. It’s not definite, no, but it’s a positive. After seeing how much her foot had turned back in, I was afraid we’d be guaranteed bone work this time. But he thinks there’s still a chance we won’t. So…yay!

She will go for three weeks of casting starting in November. Then surgery will be at the end of the month.


Eff You Spina Bifida!!

Having a real “eff you spina bifida” night here. Everything had been going fine. We went to the beach, didn’t do the cone for a couple of nights. Got home, got back to our routine and I thought we were doing okay. Then cathing went back and forth between dismal output a couple of times a day, and leaking considerably between caths. And we’re having aftershocks regularly when we hadn’t had any issues.
I bumped her solution down as the aftershocks weren’t very messy at all, mostly water (even when output at time of cone was ‘ideal’ consistency). They have lessened, but still happening.
Then tonight we are 3 hr after enema time and she’s had at least 4 little aftershocks. No activity to speak of to jostle things. We’ve just been relaxed and chillin’.

What. The. Flip. Is going on?!? I’m just so weary right now.

I feel like all day every day has to do with the bathroom. We’re cathing, coning, or cleaning up. 😩😩

JUST when I thought we had things figured out and she was even wearing underwear (no pad!) all day! No problems. Just pad at night since we don’t cath overnight. And even that was often dry in the morning.

Everything seemed to be going so well and now it all seems so wrong.


June 2016 Clinic

Five and a half years old.

Three surgeries under her belt.

Today’s clinic went well. We touched base over our bladder and bowel control regimes. We discussed future options. We talked about progress and progression.

She still has a touch of kidney reflux, but nothing worse. So that’s a positive. We are going to test out a higher dosage of Ditropan. First briefly to test her physical reaction. If she gets too flushed, or dehydrated or otherwise reacts negatively, we will reconfigure. Likely going to 5mg twice a day, instead of the 10 all at once. Hopefully that will help her stay dry between cathing, which shall remain at 3-3.5 hr (preferably 4, but we can deal with 3 during the day) more consistently. If the 10 mg still doesn’t do enough, we will add Sudafed. But again, hopefully it won’t come to that. Things aren’t horrible now, just not super consistent. We are hoping to line that out a little more. Also, after next clinic (in a year) we will try backing off the Bactrim to see if she then develops a UTI, to determine if the Bactrim is still necessary. She is on a very small dose of it now, so it *is* possible she would be fine without it. So, next year, we will test that theory.

Bowel control. We will experiment again with frequency. We tried every other night before and it seemed like there just wasn’t ‘enough’ on the nights we did it to have made up for the night of not doing it. And it continued to not be as productive as the nightly ones were. Though even nightly, we would go a couple of nights and then it seem to not be as much. Obviously, we are still figuring out what’s normal for her. We will try omitting a night or two a week, consistently, to see where that gets us. And then maybe move to every other night, watching for bloating, stomach aches, and constipation. Otherwise doc was content with what we were doing, how we were adjusting and figuring things out for ourselves, confident we had this under control.

Neuro says all is well. She is functioning fine, progressing, not regressing. She’s meeting typical goals, no concerns. Again he mentions the statistics regarding a retether surgery. In studies, half the patients needed surgery by age 10. Very few under 5yr. He’s good at keeping it real. Yes, there’s a possibility of retethering. Is it a guarantee? No. Is it a guarantee it won’t? No, can’t say that either. There’s a 50% chance that by the age of 10, she will need a detethering surgery. But in typical Dr. Oakes fashion, he then rephrases “…or a 50% chance she won’t…” Folks on the Spina Bifida page I frequent were talking about a neuro psych evaluation at this age. I asked about it and he wasn’t concerned at all. He said if I was asking him to set one up for her, ok, he could do that. But did he see it as necessary? Not at all. She was not a candidate for concern in his opinion. I also asked his thoughts on chiropractic care. He was not inclined to such. He says it would do nothing at all for cases such as hers. I’ll have to mull that over a while. I believe in chiropractic care and believe it *can* do some amazing things. No I’m not expecting it to cure her. Oh goodness no! But might it help keep things loosened and keep her from having the leg falling asleep as she’s had a couple of times now? That’s all I’m asking for. Keeping things loose. So, I’ll have to think about that some more and continue discussion with our chiropractor. I may still have her receive some treatment. Not anything aggressive at all, and not even very often. But maybe ‘here and there’ ?? We’ll see.

And that pretty well sums up our visit. Our neuro will not be seeing us next time. This is the end for him, his last year. It’s kind of weird to think about that. I mean, we knew it would come. He wasn’t exactly a spring chicken when we met him. We were sure he would leave us before we left him (provided we didn’t leave this state any time soon), but still..it’s…something. This man who diagnosed and operated on our child in such a delicate manner..who has been with us for 5.5 yr now..will no longer be walking with us.

Oh, I guess I forgot something, ortho! As mentioned before, last fall’s surgery *did* help her right foot, but it did not do all that we had hoped it would. Last winter we were already discussing another surgery next fall..that we would discuss that at clinic in June. So, here we are. Surgery is still slated for the fall. Of course the exacts of that will be defined later. Doc will review xrays and notes and devise the best plan of action. That is likely to take a few turns over the course of these few months. But…she *will* be having surgery on her right foot again in the fall. Another tendon release/transfer…thing.

Now, that is all. I believe.


Today, Baby Girl graduated from physical therapy. Woot! Woot!

At least through the summer and likely into the fall.πŸ˜‰

Doc said the surgery in September did what he expected it to do. All is well, it has healed well and brought about the changes he expected. However..

They weren’t quite enough. He had *hoped* he could get by with the less intervention. He had thought about doing more, but really hesitated releasing that other tendon. Often when that one is released, the kid is left with nothing at all. So after much thought and consideration, he chose to leave that one alone and hope the release of the one was enough.

But it wasn’t. Yes, what she had done helped. A lot! It just did not result in the change we had *hoped*. Her foot still turns inward a lot and she tends to roll it. Not as much to the top now as just to the side. But the point being, she still has a hard time walking with a flat foot on that side.

So, the plan is nothing for now.πŸ™‚

We are going to run and play and jump and SWIM this summer. Hopefully get our potty routines completely nailed down and like second nature. We will talk to Doc again in June and at that time we will talk more about possible surgery in the fall. After pool season is over.πŸ˜‰ Important things, ya know.

Until then, no more PT, just exercises at home.

Potty Time

Yeah any parent is used to seeing those words and they have a very different picture in their head than what we are dealing with here.

BabyGirl doesn’t have sensation or control of her bladder and bowel. We weren’t entirely sure her level of either, so we held off on doing anything until she was well into the typical ‘potty training age’ range.

But it is obvious she has no idea when she has to pee, only knows that she has if it is running down her leg. She has no concept of needing to poop nor how to push it out. Nothing.

So it’s time we start working on social continence. She’s five. Five year old’s are generally not wearing diapers or wetting or soiling themselves. Yep, it’s time.

We started with a cone enema routine. I dreaded this so much. I put it off when it was mentioned in passing last clinic. I’m like “no, I’m not ready for that, let’s try the less invasive tactic first…” and that we have, to no real resolve. So, enema it is.

I kept reading stories about kids sitting on the toilet for an hour at a time every night. Seriously? An hour? For a five year old? That seems so unfair and torturous! I can’t do that. Please no.

But, as I said, our previous tactic wasn’t getting us anywhere. We were always changing messy diapers. There was no timing and consistency. No catching it in the potty. So, onto the next step.

It honestly took me a while to get ‘there’. But with the great encouragement of folks on the Bowel Management page for folks with Spina Bifida, I began to feel more confident. Ok, I can do this. I have to do this. She needs to do this. We need to do this. Ok, let’s go!

I then called her doctor and they ordered us up a kit and it was here in short time.

It wasn’t so bad. It really wasn’t! We’ve done a little tweaking already, but I think we’ve settled into our routine as far as our ‘perfect solution’ and schedule.

No accidents between potty times!

Next up, call the urologist and get started on cathing so she can work on staying dry as well. I’m not as intimidated by that, but nonetheless, I’m still sitting here with the call not made, dragging my feet.

We’ll get there.


Nearing the Finish Line

BabyGirl is almost done with her casting. Today she had the 2 week post op cast removed (the second after surgery, that she has had on for two of the three weeks since surgery) and was measured and cast for an AFO. Then to see Doc who looked her over again, saying all was looking good. She’s back in a cast for another couple of weeks while we wait on the AFO. She has permission to weight bear!! So the walking boot is back on and she’s off and running. Hallelujah! We’ve been waiting for THAT! I’m getting rather tired of the plasma car and helplessnessπŸ˜‰

Post-op and MRI

Hey! Look at that, I made it back!

BabyGirl had surgery Sept. 29, 2015. All the technical terms that get thrown around and the way it changes just a little bit each time we meet…well..what actually happened has gotten lost in translation. But she had surgery on her foot to lengthen and release tendons to work on achieving a flatter foot on her right side.

She had serial casting for three weeks prior to surgery. First she picked out a purple cast, because purple is her favorite color. Mr. Will forgot to offer her sparkles though. He felt very bad that he didn’t remember them until she was walking out the door. So he told her to remind him next time and if she wanted them, he’d be sure to hook her up. She remembered. So the second time she had pink camouflage with purple sparkles. Mmhmm Girly girl. Then she surprised everyone by getting dinosaurs.

Then surgery.

They were slow getting her back that day, she was getting hungry. They finally came for her, over two hours after anticipated. Everything went well. She was soon happily chugging down apple juice and throwing back french fries in her overnight room.

She never complained of any pain or discomfort. All night. She did great! Oh and she had a bright pink cast put on that time. We didn’t see her incisions until a week later at follow up. Again, all looked well and was going great.

Throughout the initial casting she was allowed to wear a boot and walk. But not after surgery. We were sent home with a wheelchair, which she figured out very quickly. However, he preferred mode of transportation was the plasma car. If you don’t know what that is, Google it. They’re awesome! We already owned one from a few years ago, it has gotten much use. But the week before surgery I happened to see one at a thrift store so I snatched it up. Then it dawned on me how brilliant this was. She can scoot all about the house on it on our wood floors.

So now we have a few weeks of post op casting with NO weight bearing. Plasma car is a life saver!

Now going into this whole serial casting/surgery thing, doc mentioned getting an MRI just to check if anything was going on there affecting this foot. He was confident enough that it wasn’t, so continued with the surgery. But concerned just enough about everything that he put a call in to her neurosurgeon who concurred and thus the MRI was ordered.

That’s what we did today. Went to one hospital for the sedated MRI. This girl is a RIOT ‘drunk’ by the way. Most don’t see the really funny side of this girl, certainly not doctors and nurses. She’s all quiet and serious around them, whereas at home she’s wild and free and chatty. But waking up from sedation…she was something else. I laughed so hard I had tears streaming down my face. I mentioned the plasma car…we bring that to doctor’s visits and such so she can get around on her own. So, we had that with us, but obviously, after sedation, she wasn’t going to be driving it back out to the van. First a nurse mentioned grabbing a wagon. My daughter just mumbles ‘no, no wagon’, the nurse didn’t hear. Nurse comes back after a bit saying she couldn’t find a wagon, so “we’ll have to use a wheel chair” and that’s when my daughter had the room rolling. She whipped her head around and shouted in drunk redneck fashion “I don’t need a wheelchair, I have my plasma car” with an indignant flair. ‘Sweetie, you’re too drunk to drive, we’ll get you a wagon to safely ride’ She continued to blabber on and laugh and crack herself up with little things. She noticed she was dizzy and wondered why then would break out in laughter. Oh goodness she was fun to watch.

Anyway, we finally made it downtown to meet with the neurosurgeon who in typical fashion plainly stated the facts and was on his way. Pretty much that fast.

Our girl has a very complicated case of lipomyelomeningocele. Doc says it is so complicated, you couldn’t drag him back into the OR kicking and screaming, to work on her, unless we told him she was drastically falling off the charts neurogenically speaking. But she’s not. She’s doing just fine. She gets along fine, there have been no changes or set backs. She’s still progressing and getting along just fine. So he says no surgery. He says he’s worried going in would cause more harm than good and if she’s already fine…leave it alone.

So, no surgery, that’s a good thing.

But that ‘complicated case’ thing is kinda hanging with me. What does that mean for her future? Right now it doesn’t seem as though that means anything negative, it’s not had any adverse affect on her. But will that always be the case? Will things just look like a mess down there…but ‘miraculously’ manage to keep functioning well? I’m not real sure what that means. So, I guess I can mull that over for a while and if questions arise, write them down for clinic in June.

Until then…two more weeks in this cast then she’s fitted for a new brace, with my not so favorite folks…but doc swears by their work and we trust doc so I’ll just be bold and request that the techs go back outside and air out after their smoke and wash their hands before touching my daughter, should the need arise again.

Spina Bifida Awareness Month 2015

I often feel like an uneducated idiot when asked about Spina Bifida, what it means for my daughter.

You see, Spina Bifida isn’t ‘cut and dry’ like other defects, diseases, or what have you. It isn’t as simple as “this means she will need a kidney transplant by age 4” or “She will never see out of her right eye, because there isn’t one in the socket” No, it is not nearly so straight forward as that.

My daughter has a lower level lesion…it is in the lower L or sacral region. That means, any and everything from that point and below, could have been damaged in ANY capacity. Another child could have the same level lesion, yet one could have complete bladder control, and the other can’t feel a thing, constantly leaking. One may have full use of both legs, the other may not be able to control their left with any accuracy at all. One may be able to walk independently, the other may need braces and/or a walker.

There’s a lot of wait and see involved with a Spina Bifida diagnosis. We wait to see if they can move their toes at will, their legs. We wait to see if they will be able to sit and crawl, pull to a stand and take a step. We wait to see if they can control their bladder and bowel, if they can hold it, if they can release at will.

So someone asks me, what does Spina Bifida mean for her future..and I cannot really answer them. Not because I know nothing about my daughter’s condition, but rather because I know more and more about it all the time and that tells me more and more, nothing is certain. Nothing is written in stone. Nothing can be fully determined. We are all along for the ride.

I’ve heard of others who were told their child would never be able to walk, and now they are running and playing on sports teams. Even their doctors were along for this ride of uncertainty.

Others who were told their child would have no movement in their feet, surprise them all by moving the foot and pulling to a stand.

I guess one thing we can say with certainty, is you can never tell a Spina Bifida child they ‘cannot’ or ‘will never’ do something, because they WILL prove you wrong.

They cannot be put into a box. Not with their diagnosis, not with their lives and abilities. Every single one of them is different. Every single one of them is strong.

And their parents.

I look around and see the parents of other children with this diagnosis, and I see immense strength, courage, and determination. Parents who chose life and to love. And have ended up being the ones with their socks blessed off and standing in awe and wonder of these determined kids. Who in turn give the parents more strength to keep doing what they’re doing. To withstand the therapy appointments, the doctor’s visits, the surgeries, the sleepless nights of worry and fret, the depressive feelings of failure.

We may not know what ‘the future’ holds for our children, but we are learning every day how to better help them. We are learning more about ourselves and our children, each day.

Surely I am not the only parent out there that feels this way. Please do not think I’m uneducated or not asking questions and getting answers about my daughter’s condition simply because I cannot answer your questions. There just aren’t answers to everything right now.

This is part of why awareness is so important. Others need to understand this uncertainty, this broad spectrum kind of diagnosis. Spina Bifida. It sounds like a clear diagnosis with specifics, but it really isn’t that simple. So join us, the parents, in learning about this birth defect and spreading the word.

June 2015

It’s been a long time since I’ve popped in here. We’ve just been going on with our lives. Day to day stuff.

BabyGirl is now 4 and just the same, only more. She makes me smile daily. Even on the days I don’t feel I have it in me. She has quite literally been my lifesaver here in recent months.

She just had her yearly clinic visit, which was supposed to have been back in February, but we were expecting Snowpocalypse 2 down here, so everything shut down and cancelled in anticipation. So, that go rescheduled for June. June!! But anyway…

No big changes in anything. Her scoliosis hasn’t worsened at all, kidney reflux still there, though no worse than before. She’s still running around, keeping up with everyone and everything. Still with that one foot turned inward.

She’s worn orthotics. There just doesn’t seem to be a big difference in when she wears them and when she doesn’t. There’s only a slight change *when* worn, obviously no correction going on.

The fact that there has been no big change in that, leads us to think it is time for a big change. We are looking at surgery in the fall. They will relax one tendon, move one to where it will be better served…something like that.. First she will undergo some pre-op casting in which they will begin moving her foot in the direction we want it to go and thus get a better feel for what actually needs done. Having her in a cast for those weeks prior to *and* after, is not high on my looked forward to events, naturally. But I *am* looking forward to this being done. I understand it’s not meant to be a ‘cure-all’ but I do think it is for the best and will improve things for this time period.

She will also begin a bowel program and we will begin working on a cathing schedule. I’ve been putting this off for a while now. I feel so lost. Where/how to start? But, I’m just going to have to jump in and get started with it. She’s 4. She can’t go to any pre-k programs or such wearing diapers. Not that I have plans to send her anywhere, I’m just saying…it’s time. So, wish us luck!

Also, her neurologist wants her to have another MRI when she comes back next year. It’s time to check in on everything.

And, there we are. See you in another year I suppose. In the fall for surgery if you’re lucky.πŸ˜‰

Happy 3rd Birthday BabyGirl!

She’s three! How the heck did that happen?

BabyGirl has grown up so much recently. Ohmygoodness!

She talks non-stop. Questions, randomness, silliness, and stories. She LOVES to talk! She also loves to argue with her siblings, a habit we are trying to curb, you know, keep to reasonable levels. She argues for the sake of arguing.

She has also been making great strides physically. She is wearing a new AFO (though, I think they called it something else..sfo ??) which seems to be making some headway on her inwardly turned foot. We have determined that the turning is coming from the knee, as opposed to the hip. The hip still lacks strength, but it is supporting and not causing the twist. So, now we are trying Theratogs again. We dabbled with them before, but I was never confident our PT knew quite what she was doing with them. I mean, sure, either of us could get things wrapped around in a way that ‘made sense’, but I just wasn’t confident in her experience or expertise with them, so I feel we didn’t make it far.

But now, this PT is more confident in her approach and I feel more confident in her ability. She whipped something up right away on BabyGirl and fully explained every step. I’m feeling better about this Theratogs endeavor.

Now to get back into the habit of putting them on BabyGirl. Every day, fully dressed, Theratogs, brace and shoes. When you are a stay at home family and something like this comes along, you realize how relaxed things are and how often your small children go around half dressed.πŸ˜‰

Thankfully, BabyGirl does okay with new routines. She may still whine a little bit here and there, but she still goes with the flow. I can tell her to go get her socks, brace and shoes…and she willingly does. Now if we could get there with the Theratogs, we’ll be golden! Previously, she would go get them, but she wasn’t happy about putting them on. Once on, she got over it and carried on, never giving them any more thought. But something about putting them on…she’d balk every time. And she did again yesterday at PT when they were brought out. *sigh* Hopefully she’ll lighten up on that.

Off to a great start…I just told her to go gather her things and she’s whining at me. It was the addition of “Theratogs” to that request that put her over the edge. She never fusses about the footwear.

But anyway…

She’s growing and improving so quickly. She is quite the little handful. She is very entertaining. She never fails to bring a smile to my face. She’s lovey and snuggly. She’s independent and assertive. She’s pretty darn awesome!

Happy birthday BabyGirl!