More Changes Ahead

Just back from an appointment with the orthotist. 

After working with a physical therapist for the last several months and trying Leap Frog AFOs as well as TheraTogs, we hadn’t gotten far. LilBit still wobbles a lot. She cannot stand still in one place, constantly moving to maintain balance.

We’ve been seeing a new therapist since our move and she has been more proactive, which I have liked. She suggested a new brace. One unlike the ‘one for all’ Leap Frog variety she had been using. She was talking about a ‘just for her’ molded brace, similar to before we used the Leap Frogs (butterfly brace, remember that?).

Same company as before, but a different guy. Already, my ‘vibe’ of this guy has been better than the first guy. We have made it quite clear we will not work with him again. At all.

Anyway, so, we got in there today under the impression she was to be checked and fitted for a brace to correct her ‘c foot’ on the right. And again, once it came time for casting, two were mentioned. So we backed up and talked about that and the orthotist backed off and we settled on just one brace. Sooo….a little bit of ‘car salesman’ stuff going on there, in my opinion, but like I said, overall, this experience was better than before. (by all means, ask me in a couple of hours and again after a day or two…but I think this is a better experience this time)

LilBit will soon be sporting a purple orthotic. This will be a small one, similar to the LeapFrogs, but specific to her foot and needs. It will hopefully help stretch her foot out so that more surface comes into contact with the floor when walking, rather than catching just the side of her foot, due to that high arch/c-shape.

Again, she wasn’t thrilled with the whole process. But then again, strangers! She’s having another phase of ‘stranger anxiety’ here lately. I mean, all of my kids have been on the shy side, but, I think this is just that ‘stranger anxiety’ thing and hopefully will fade again shortly. But for now, it’s making things rather difficult and she wasn’t too eager about her appointment today.

However, we managed. As we came down the hall to our room, the orthotist caught us in the hall so he was able to take those few moments to see her in action and make an initial assessment. Good thing, because she wasn’t overly cooperative once back in that room. She didn’t improve with the therapist came in and *sure* didn’t improve once the orthotist came in. But anyway, we managed. She played her games on my phone while he did the casting, stopping only briefly to glance down at what he was doing as he had to change positions to cut it off when finished.

He was able to get her foot rather straight for the casting, so, I’m really hopeful that will help LilBit. Now…let’s hope she doesn’t resist wearing it. In the end, she does what we make her do. But, I don’t want for her to whine and fuss when I say it’s time to get her brace and shoes on, ya know? I’d rather it just be common place again “Let’s get ready to go” and she brings socks, brace and shoes.

And hopefully this isn’t too much of a change to cause her to get frustrated and shut down. I highly doubt that will happen, but still, once someone mentions it, you can’t help but think it from time to time.

I’ll try to remember to post pics of the PURPLEness once it gets here.

Then begins the shoe shopping challenge, again. She’s been in need of shoes for a while (due to wear, mind you, not because her foot has grown any :-p) but I’ve been putting it off because I wasn’t sure what we were doing about bracing needs…with clinic coming up in February…I didn’t want to wait THAT long, but, ya know.

So, that’s where we are today.


Awareness Month 2013

Once again, October rolls around. Once again I am reminded of the permanence of my daughter’s condition.

October is Spina Bifida Awareness Month. A time dedicated to sharing and educating others of this birth defect that affects around 1,500 babies every year.

What IS Spina Bifida?

Spina Bifida is a neural tube defect. A phenomenon in which, around the 28th day from conception, something goes awry.  At this crucial time of conception, the neural tube is developing into what is later known as the spinal cord which we all know is surround and protected by the spinal column. However, in a baby with Spina Bifida, that doesn’t happen. For whatever reason, this development doesn’t go ‘as planned’ (I use quotes there because it is all still going according to His divine plan 😉 ) and a gap is left in the spinal column. Often, vertebrae are also deformed.

Most of the time, when people think of Spina Bifida, they immediately picture the open lesion on a newborn’s back. That is all people know about Spina Bifida. That it has something to do with the spine, the babies can’t walk and they were born with a hole in their back.

But that is not very accurate. Yes, babies born with a myelomeningocele are born with a hole in their back. The place where the spinal column did not fuse together and the spinal column nerves are thus exposed. However, not all Spina Bifida cases are the same.

There is also the occulta variety, which means hidden. These people often do not even know they have Spina Bifida and show no signs of having a defect. They go on with normal lives.

Then we have the meningocele variety in which a fluid filled sac (cyst) protrudes from the spine. However, no nerves are involved in this. It is ‘just’ an opening in the spine. The cyst is removed and development is usually unphased.

So now you are probably wondering which one we are dealing with. Well, we complicate things even further as my daughter has something not on the list. We always have been ones to buy the odd year of a vehicle that changed a part midway through the year or some such thing. In like manner, my daughter had to do her own thing with her neural tube defect.

BabyGirl has what has been labeled lipomyelomeningocele occulta. I’ll give you a moment to try to piece that together on your own.

This means, she had a fatty protrusion (lipo) covering her lower spinal (sacral) region. This is what drew our attention to the issue. Once that was checked into, it was then determined she had the myelomeningocele variety (spinal nerves protruding outside of the spinal column) which was then considered occulta because it was all hidden by the cyst and the lipo.

So, she was not born with a gaping hole in her back. There was no visible sac outside her body. She just appeared to have a fatty lump atop her bottom.

She had surgery when she was just a week old. This corrected the defect. The neurosurgeon went in, opened the lipo, got down to the delicate, intricate nerves of her spine (hello? complete control over the entire body!) and gently placed them back inside the safe covering of her spinal column and closed everything back up. She also endured another surgery a week later due to an infection in the site wound.

Surgery Scars
Surgery Scars

What does this mean for us now?

It means we have a daughter who is slower to walk and run. She doesn’t run like the other kids her age. She cannot stand on her tippy toes. She can only just barely, momentarily balance on one foot. She does not navigate stairs ‘left foot, right foot’. She is nearly three and nowhere near ready to potty train. Her feet are two different sizes. Her legs are slightly mismatched. One foot turns starkly inward with an over-pronounced arch.

One full size difference. Also the tone in her calves is quite different.
One full size difference. Also the tone in her calves is quite different.


You can see the deep wrinkles where her foot curls in on itself and the massive arch.
You can see the deep wrinkles where her foot curls in on itself and the massive arch.

It also means we have a child who has shown us the real meaning of empathy.

It means we have a child through whom we have seen the hand of God.

And the love of His people.

Through her eyes we have seen and experienced so much joy.

Slightly out of focus BabyGirl
Slightly out of focus BabyGirl

So, I have a child with Spina Bifida who can walk and talk and run and play. She can roll and kick a ball. She can bounce on her knees. To most, the defect is hardly noticeable.

But it’s still there. It will always be there. Every day I see the scar on her back, I am reminded, that will likely not be her last. You see, an ongoing problem with Spina Bifida is that the cord often retethers. Which means, in a normal person, the spinal cord floats freely within the spinal column. This allows one to grow and stretch and develop normally. However, in a Spina Bifida patient, the cord will reattach itself using the surrounding tissue. Thus preventing that free movement that is so necessary for growth and development. This re-tethering will cause pain and stiffness in the legs and feet. Toes will curl up and legs will become weak. It is not a guarantee, but a quite likely probability that her spinal cord will try to re-attach itself and she will need another surgery to disconnect that.

Every day, when I see that inwardly turned foot, the scuffed toes and calloused soles, I am reminded that my daughter is not ‘normal’. She will never be.

When she was just beginning to navigate stairs on her own, this summer.
When she was just beginning to navigate stairs on her own, this summer.

As I said, she is nearly three and we are nowhere near potty training. A skill that was mastered by most of my children by this age, we have not even begun. She’s not there. She doesn’t even feel it. There is no sensation, therefore, there is nothing to train. One must have awareness before they can be trained how to use it. BabyGirl lacks awareness.

She will always have some degree of bladder and/or bowel malfunction. The extent of which we do not yet know. But for now, she is prone to UTIs (urinary tract infections) and is on a preventative medication to hopefully keep those at bay. She will almost certainly have to self-cath as she gets older. Which means, she will use a catheter device to eliminate urine from her bladder so that it does not reflux up into her kidneys and cause a full on kidney infection. This means, in addition to potty training, I will have to teach her how to self-cath. She will have to deal with that the rest of her life. She also lacks control of the bowels. She cannot bear down to eliminate. It just happens. Her body voids it on its own. She is unaware. We do not know yet what kind of control she may yet gain over that function. Something else I will have to teach her to deal with.

Every day, I look at this little girl and feel immensely blessed.

Her face looks terrified, but she was squealing with delight.
Her face looks terrified, but she was squealing with delight.

I was given a gift like never before.

I have been given new eyes to see the world.

I am eternally grateful.

For my daughter.

For Spina Bifida.

Spina Bifida isn’t just an open lesion or fluid on the brain, wheelchairs and braces, diapers and wobbly legs.

It’s kids, like mine, with beautiful faces and lovely hearts, teaching the rest of us how to love and how to live.

My face of Spina Bifida.
My face of Spina Bifida.

If you would like to learn more about Spina Bifida, please follow these links:


Educating yourself on Spina Bifida will not necessarily prevent it from happening to you and yours, but at least you can be prepared and have a better idea of what’s going on when it does. Educating yourself can help it seem not quite so scary. Educating yourself can help you as you encounter others afflicted by this birth defect.

February 2013

I haven’t checked in for a while. My apologies. It’s just that when she’s progressing along, she is just that…progressing along. And there is seemingly not much to report.

But I suppose I could break things down for you a bit.

Back in November she really started cruising. She would walk along furniture and walls in short spurts and take a few wobbly steps on her own.

Within just a few short weeks, there was less holding/cruising and much more independent walking.

She turned two in December and enjoyed a birthday cake made by sister.

Since then she has continued improving her walking skills. She has practiced standing up on her own, without the support of a chair, wall, or person. She still doesn’t do so consistently, but she *can* and we encourage it as much as possible. Calling out the “cheater!” when she crawls to a wall to pull up after a fall.

She outgrew the calf length brace some time ago. We have now gone back to the smaller, ankle support LeapFrog option. A new brace meant new shoes. Her feet had finally grown and the shoes we bought previously to accommodate the brace and insert, had then fit just her feet properly. So, the new brace was never going to fit with those shoes.

Once again it was a depressing battle. It is not easy to find shoes that will fit over the brace. We had managed to keep both shoes the same size last time and I was hoping to continue that again. We did, for the time being. But I think it is going to be better if I go back and get the smaller size in one of her new pair. 

She turns her right foot inward to accommodate for balance lost in the weakness of her left foot. We need to turn that back out. She is likely further encouraged to turn it in due to the extra length of that shoe. So, it looks like I’ll have to go buy the smaller size pair…so we can have that one smaller shoe.

That stinks to think about. Buying two pair of shoes so you can use one shoe from each. Buy two pair so you can use one. Boo! But, such is life with Spina Bifida, right? 

Then, PT came by today to check on her shoe fit. We had an annual evaluation as well. To go over our goals, see what had been accomplished, what still needed work and to set up a new treatment plan.

PT mentioned the possibility of to help with her gait and the turning in of her right foot, if there is no marked improvement over the next month or so.

That kind of kicked me in the gut.

I mean, it’s not a huge deal. But, it is.

Just another of those reminders that even as we see her making strides and making such progress, there are still deficiencies, there are still problems. She STILL has Spina Bifida.

Another reminder that…that’s never going away. It will always be. Sometimes it may seem more obvious than others. But it WILL. ALWAYS. be.

And the price on those things? Yikes!

I better get back to work filling out this application for assistance. And hope that comes through for us. It will help with her braces as well. But these small ones aren’t so bad. However the taller ones are pricey. And these Theratogs!?! Ouch!

Praying that’s not needed. But also praying that I realize it is not the end of the world if it is. I just want to do what is best for my BabyGirl. I want to continue to see her advance and grow strong. So if that means $500, out of pocket, for special clothing, so be it.

Awareness Month

It’s October! That means it is Spina Bifida Awareness Month.

I’ll be honest…I often forget. I don’t think about it. October sneaks up on me and I’m like “oh, yeah…I should try to help in that awareness”

My daughter is on the mild end, as one affected by Spina Bifida, a neural tube defect that affects some 1,500 babies every year.

Spina Bifida knows no color boundaries, nor financial state, nor city or state. It does not have to run in a family. It just shows up. But once it is there, it is always there. It is then carried on, with a possibility of coming out on another child.

As I said, my daughter is on the mild end. She was born with a lipomylemeningocele around the sacral region of her spine.

That means, she did not suffer from hydrocephalus. She did not need a shunt to control a build up of fluid on the brain.

She was not born with an open lesion.

She did not need skin grafts in order to close things up.

She ‘simply’ had a fatty spot that covered a malformed area of her spine. An area that was operated on and ‘fixed’, but it is not a permanent fix. She is not cured.

She still deals with Spina Bifida every day and will continue to for the rest of her life.

Something I am reminded of as I watch my 22 month old attempt to walk on her own. She still waddles while holding our hands or cruises along the wall. She does not yet take independent steps. All of my other children were walking (or running as the case may be) by one year. Here we have nearly doubled that and still no independent steps.

It was hard to see her peers, friends’ babies born around the same time as LilBit, pull to a stand at 9 months. Then they take their first steps at 12 and 14 months. And my LilBit is still back here thinking about straightening her legs, putting some weight on them, to semi-support herself in a stand, as we fully hold her arms, hips or torso.

Then come her younger friends. The ones 6-12 months younger. They now pull to a stand and take steps on their own.

These other kids can easily and independently move both of their legs at will. You can point to one foot and ask them to lift it, and they readily will. Not my LilBit. She loves to lift her foot for me to tickle her toes, but that only works for one side. The other side she hasn’t much control over. You can see her concentrating, looking at the foot she wants to move, but it doesn’t. Instead, the other, easier side, is moving.

These other kids will lift one foot and then the other as they walk across the room or up stairs. Not my LilBit. She will lift one, but mostly drag the other.

Her close in age peers are now moving into the realm of potty training. A thought we can’t even begin to entertain at this time with LilBit. At this age with my other children, we were introducing the concept. Some were already there and done. Some were just catching on. Some…weren’t sure. But LilBit is nowhere near. It gets frustrating at times because we have to change so many diapers a day. Her bladder and bowels are affected by Spina Bifida. She has no control that we can tell at this time. She does not feel that ‘urge’ to go. So where other kids her age are beginning to catch on to that sensation and can ‘fill a diaper’ when it is time to go…she doesn’t. It just happens bit by bit as her body deals with it. Which means, a spot here, gotta change her, a spot there, gotta change her. You never know if she’s going to ‘finish’ within the next 10 minutes or two hours. So you can’t just let that spot be. So, we constantly change diapers. And like I said, at almost two, this is generally the time when we get to slack off on this aspect. We’re getting OUT of diapers. But, not with my LilBit.

It can be depressing at times as one inevitably compares to others. As parents we can’t help but do that at times, can we?

But I know my LilBit is making great strides. She *is* improving. She *is* learning to walk. It’s just taking her longer. She has to work harder because that one leg doesn’t want to work as much.

She’s been in physical therapy. She wears her brace for support and strengthening her leg muscles. She will now cruise all over the house holding onto the walls or furniture. She walks well while holding our hands. She has even gone to just barely holding one hand. At times I can convince her to hold onto a toy, as I hold the other side. She supports her own weight much better that way. She’s just not confident she can do it, so often reaches for a hand.

Just this past week she has been letting go of the couch, turning around and trying to take a step or two. It’s more like flailing lunges before a *splat* to the floor. But it’s an attempt none the less.

She’s getting stronger. She’s getting more confident.

She’s just not *there* yet.

So, I am here, sharing her story, our ups and our downs, to show you the face of Spina Bifida. It’s real. It knows no boundaries. There is no cure nor preventative measure. Yes, research has shown folic acid is helpful. But just because you take plenty of folic acid does not mean your baby will not be born with Spina Bifida. It still happens. A lot. But, being the ‘rebel’ that I am, I will also go so far as to say, just because you do *not* take your folic acid, does not mean you *will* have a baby with Spina Bifida, either. Personally, I *would* err to the side of taking the folic acid in an attempt to prevent. But know it is not a guarantee. It’s a ‘freak accident’, quite honestly.

Just be aware….and know that it is *not* the end of the world. Don’t be frightened if you hear those words. Don’t assume the worst. Don’t expect a horrid, trying life.

Instead, see the wonder and the blessing of this life. And what they can teach you. 🙂 Give them life and let them give you the joy. Prepare to be blessed immensely!

Anticipating a New Brace

So, as I recently blogged, LilBit had clinic last week and we discussed a new brace, as she’s outgrowing hers and PT had mentioned talking to the other PT about the higher brace.

So we went to her appt for that today and got her molded for a new AFO. I’m trying to decide how I feel about this whole scenario, this guy who’s doing it.

All this one has ever mentioned the need for two braces. They were only concerned with the left ankle rolling. Then PT wondered if she needed a little extra support. Just something to give a boost in confidence and security.  I understood that logic.

Then I start hearing about her weak thigh muscles. Not drastically weak, just weakER, again, the AFO would help with that.

The differing dr opinions thing…one strongly suggests a brace, the other ‘meh, whatever’. But in the end, that one seemed to even out to something I was comfortable with. And felt like going ahead with a new, taller brace was the right idea.

Then we have the appointment today to have her cast for it. He barely looks at her at all. Hardly sees her walking. And is then ready to form up braces for BOTH legs??

No one has ever mentioned both legs. Ever. EV.ER! They have ONLY EVER mentioned bracing the left side as it is weaker.

Now this guy is talking both? What the heck? Where did that come from? I mean, if that’s what she needs, ok, sure, we’re all over that. We’ll do what she needs. But …. ?? So hub said something about it and the guy like flipped a switch. Not to the defensive “oh this is what you need to do…” but rather “oh, ok, no problem, we can just do one” Um, ok, that was easy. Too easy. Then why in the WORLD were you saying two if you now act like it’s no big deal at all to just go with one ???

Is anyone else thoroughly confused by that?

I’m just getting a not so great feeling about all of this now.

And then the money. *ouch* Something goofy with insurance deductibles and we had to pay more for this today than we realized. Not cool.

I don’t know. I just have a less than fab feeling about all of this now. *sigh* And I don’t know what to do about it.

I want to do whatever BabyGirl needs, but I don’t want to do or feel pressured to do MORE than what she needs. *I* think she could benefit from the taller brace. I also think it could lend confidence and that with work on her skills, as we’ve been doing, with and without the brace, that she will progress at a faster rate. That is truly what I feel and believe. Her PT, who has seen her twice a month for the last several months, thinks the same way. My husband thinks this same way.

Her doctors at clinic feel similarly, as we finally deduced. No one wants over-bracing. We all want ‘just enough’. We all want her to continue to work her legs/muscles and work on walking independently. We all believe she is highly likely to do so.

Then enters this guy who does the AFOs.

At this moment, I’m feeling like he was just swarming around the SB clinic that day awaiting a victim. And made his advance at us.

I don’t like that. I don’t like that feeling at all! And it irritates me even more than my baby is involved in it. Don’t USE my child! Talk about getting a mama bear fired up, right?

So, I guess I have some more soul searching to do here, and talking. I don’t think we can cancel anything now. But, oh well. Once this is done though, I’m not sure I’ll be going back. I’m just getting a not so great feeling here.

Clinic at 20 months

LilBit had SB Clinic this week. I had already planned to talk to them about a new brace for her as she is reaching the end of hers. Also, her PT had mentioned me talking to the other PT (who prescribed the brace) about possibly going to the taller one.

So, I had planned to talk to the drs and then see if they could schedule me with their PT again. (figuring I could probably get in faster, kwim?)

Well, she sees an ortho as well as rehab. One said he thought the higher brace would be a good idea. (this is what he said on his own, I hadn’t mentioned anything yet). Then the other comes in and says he thought she was doing fine without any bracing.


But….he barely saw her on her feet. She was VERY done for the day. It was a long, long day! She only took a couple cranky steps between me and hub, both hands held.

Then we mentioned what the other dr said as well as the PT. He understood and didn’t press against that at all. So, that was nice. It felt like the views evened out at that point.

We totally see what he is saying too. That we do not want to brace her if not needed. We want her to use those muscles, to strengthen them. As opposed to bracing them up and letting the orthotic do all the work, thus causing any strength she had, to go down.

So, we are going to go ahead with a new brace. There was a specialist in house that day, making the rounds with the drs. We now have an appointment set up, for this coming Monday, in fact, to have a mold made so she can get a new brace. Our plan is to continue to work with her without the brace, but use it as needed. We want to see if using the brace will give her confidence to step out, then still do those things even when not wearing it. Strengthening those muscles.

We’ll see.

In other news, all is well. No kidney issues have cropped up. That is the big concern right now. THAT is the kicker. THAT is why she must endure ultrasounds every six months and urodynamics testing every year. (no, the u/s is no big deal, but when you’re her age, it sure feels like it LOL she wasn’t happy at all) But, that all came back clear.

I think the biggest kicker for me this visit was the realization that….though she is doing well and is progressing physically, this isn’t over. This progress doesn’t mean she’s ‘kicking this illness’. Spina Bifida is still there. Always will be. As the neuro said, which is the one that got me, another operation to untether is quite possible. In his experience, this is not likely to happen too soon (though there is always that possibility), but, nonetheless, even if it be 8-10 yr down the road, (as he says holds a 50% chance) the possibility is still there. Spina Bifida still has my child. My child will never ‘outgrow’ this. She will never ‘beat’ it. It will always be there.

But that doesn’t mean she is limited. 🙂 She can still fight, and strive, and overcome obstacles, and be and do her best. She IS still my spunky, determined, stubborn, independent little girl. And I don’t expect that to change. Ever. 🙂

Daddy and his girls

Therapy Continues

I haven’t updated here in a while, so sorry. There’s just so little to report now, yet, at the same time, I guess a lot, for those on the outside.

LilBit has been receiving physical therapy here at home twice a month. It’s nothing dramatic. The therapist watches her a bit, sees what her natural skills and inclinations are then tries to encourage her to try something else.

LilBit has a stubborn streak. She very much does things in her own time. You can’t make her do what she doesn’t want. She was that way with crawling, remember? I was beginning to feel sad that she wasn’t crawling yet. I was ‘worried’. That was like my first kicker “she’s not like the others”. But then, she took off!

From then on, we believed that’s how she operates. She’ll do things, just in her time. Well, it’s coming to be with walking too. She still not walking on her own or even standing independently. But she will cruise along furniture, she will walk holding your hands.  She will even walk while holding just one hand. Still wobbly and inconsistent stepping, but she’s doing it. And enjoys doing it.

Therapy is encouraging her to use that left leg more. Walk her up and down steps, walk short distances for purpose, such as walking to the kitchen for a snack or to the bathroom for a bath, that type of thing. She’s started pushing her ride on/push toy lately too, with control!

The other day we were outside when the therapist came so we just hung out there. We discovered the slight angle of the driveway was PERFECT for her! She would push her toy up the driveway. It provided just enough resistance that she could stay upright. In the house it gets away from her. :p

She’s progressing, just at her speed, which isn’t in any hurry. LOL

The Shoe Saga Begins

We picked up her AFO yesterday then immediately hit the shoe stores.

I had heard Stride Rite could well be *the* place to go, due to their selection of wide width shoes. So, I had already braced myself for that. I don’t typically buy expensive shoes. But I understood our dilemma. And since LilBit’s feet *are* so small, quite short, like 0-6 months socks, short, at 15 months, I was getting myself ready for the expenditure of these shoes. Not confident other stores would carry shoes that would fit well.

But, not yet willing to give in, we tried Target. That was a no go. Mostly because the particular store we went to had a super crappy selection, but nonetheless, that was strike one.

Two doors down was a Shoe Carnival. What the heck? They had a super crappy selection of baby shoes too! Oh if you want Nike or Kswiss you could choose from several pair, but that wasn’t what I was looking for, preferably. Strike two.

Next came Payless. Payless has wide width, we might make out ok there. Wrong! First I had the sales gal who thought she knew what she was doing but she really wasn’t helpful at all. Then when she noticed I wasn’t impressed with her ‘expertise’ she just bailed.  Strike three.

That’s when I recommitted myself to the Stride Rite idea. *ouch* Our PT advised us to not spend a lot on the shoe, it wasn’t necessary, she had the ‘pricey shoe’ already, the AFO. She just needed something with the proper bottom and all. I’m guessing she’s never actually *shopped* for shoes to fit over AFOs. Oh sure, she’s talked to parents who have, but I’m thinking she’s never actually been on that boat,  looking for a place to dock.

Mind you, I did have a certain style in mind. Not that that was *the* only style I was going to accept, just, ya know, that’s what I was going to try first. I had something in mind, I was going to exhaust those options before moving to option B.

So I get to Stride Rite and the sales gal there starts off pushing this ‘option B’ looking style. Blah. It was very….not attractive. NOT what I was hoping for. Um, no.

I point out styles I was hoping for, she brings out a couple.



What about these?


Or these aren’t bad.

Oh, those might work.

And I really like these.


I have LilBit crawl around in them for a while.


She crawled out of the shoe. Not the AFO one, the other side. I was afraid of that. It was along the lines of (yes, this is a Target shoe and I said I was at Stride Rite..I was just already browsing Target shoes again and came across this shoe nearly identical to the one  I fell in love with at SR…that LilBit crawled out of 😦 )

So, you see, this meshy, open-ish, sandal-esque kind of style is what I was hoping for. It’s nearly summer afterall…in Alabama. I wanted to make her first summer in AFOs to be as comfortable as I could make them. Offering summery, breathable shoes to fend off sweaty feet.

I tried a more Mary Jane style shoe.


T-straps were out too as they wouldn’t open up enough.

I’m hoping to find something like this:  I see that the back has a velcro strap, hopefully the top opens wide enough. The next concern here is the openness of the back. They are like the ones linked above…without a full back, just a strap. I don’t know how that will do on her un-AFO foot.

Next choice, I think we’re looking at some Chucks. Not necessarily pink, not necessarily velcro, but, anywho.

Until then, LilBit shall be sportin’ these (not my first choice, I don’t care for character shoes/clothing items)***8********BG40544*W070&stockNumber=BG40544&showDefaultOption=true&subCatId=cat1530651SR&subCatTabId=&viewall=

If I can figure out how to get a pic from my iPhone to the blog, I’ll post. But, you might have to wait for a phone dump day…or for me to remember to take a pic with the Nikon. So, yeah, links will have to do for now.

Oh, I guess I could probably manage a pic fairly soon. I need to snap a shot of her AFO :p (with the real camera, I mean)

1st Physical Therapy Eval

LilBit had her first PT appointment today.

She was impressed with her crawling. Said she was doing really well there. Then noticed how she doesn’t use her left leg much. She pulls to a stand now, but she just drags her left leg up then stands on it. Not bearing a lot of weight on that side.

We were shown an exercise to help with that. We are to encourage her to step to the left, leading with that weaker leg. LilBit did really well with that. She *would* move it just as she should. She just doesn’t do that on her own, she’d rather lead with her right and bring her left up to meet it.

So, we’ll be working with her on her standing and working toward ‘cruising’.

And…she’ll be getting AnkleFootOrthotics. Her left ankle tends to roll in and she’s lacking a good arch on that foot. So, she’ll be sporting a tiny little splint to help with all that. Meanwhile, her right foot will benefit from a simple shoe insert.

Nothing too fancy right now. I’ve seen that you can customize AFOs in some really cute ‘n funky ways. But, we weren’t given any options. These aren’t custom fitted numbers, so, maybe that’s why? But anyway, in just a few short weeks we’ll go pick those up. She’ll have to wear them all the time. That means I have to find some good socks to keep her feet from getting/staying all sweaty this summer. I’ll also have to find some shoes that will fit over it all.

I had planned on a summery pair of Robeez knock-offs…but I am not sure if that will work. If those will fit or even if she ought to wear that style of shoe. We’ll delve into that more when we go for our follow up and to retrieve the AFOs.

So, no actual ‘therapy’ right now. Just work on getting her to put weight on that left leg, to cruise, leading with the left, using the AFO. Once she’s actually walking, we’ll go from there. There’s more therapy to do at that stage…not so much at this ‘not quite walking’ stage. 😉