Today, Baby Girl graduated from physical therapy. Woot! Woot!
At least through the summer and likely into the fall. 😉
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. 🙂
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. 😉 Important things, ya know.
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.
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.
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.
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.
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.
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.
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.
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!
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 time..no 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.
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.
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. 🙂
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
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 http://www.target.com/p/Girl-s-Circo-Jaslene-Sndl-Pink/-/A-12938009 (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.
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)
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. 😉
Friday we have an appointment with Early Intervention.
I was confused with the phone call as this is something different than the mail I had just received.
But I talked to the gal, then I talked to my husband and it is slowly coming into focus for me. I think the deal is that doc set us up with PT at Children’s to get us moving because it can take a while for the EI to get in place. He didn’t want us to have to wait that long, he wanted us to feel forward momentum. 🙂
So, we’ll go ahead with that appointment to make sure that *is* what’s going on and what we need to do from there with all of it.
Anyway, this week: the gal is coming to visit us, get a feel for what we believe needs addressed. Then we have an evaluation in a few weeks, actually, a week after the evaluation visit at Children’s. From there, well, I guess we’ll see from there. Like I said, I’m still not entirely sure why I have two appointments. I have to make sure we have that all lined out. It may be that she receives care via Children’s until she gets a full eval from EI ??? Anyone have some insight/input there?
So, um, yeah, well, I guess this is step 2, huh? First step was getting the appoints with the appropriate therapies in motion…now they are in motion and will be meeting soon.
Oh, for the eval…she will be tested in 5 areas and must have a minimum 25% delay/deficiency in at least one of those in order for EI to cover her. So, we’ll see. Weird how you can ‘wish’ for both at the same time. Of course you ultimately wish there were nothing wrong or different, so there would be no %. But then, you know there’s a difference and that this could help so you wish for the minimum so they can receive the help being offered. Did that make sense? It didn’t come out as eloquently as it rolled around in my head. LOL But anyway, yeah, wishing for and against a 25% delay. It is obvious there is a delay/deficiency, I just don’t know to what degree. I kind of feel like..if it’s not that minimum 25%…what then? What do we do?
Put that on my list of questions to ask Friday I suppose. 😉
Approved for physical therapy. Appointment scheduled for March 6 for our initial evaluation.
Now to look up our surgery dates to put them on our information form.
Something I thought was kind of funny. The form asks: What is the best way for a therapist to give you information and instructions: __writing them down __showing them to you __telling you. I had to check all of the above. I need it written so I remember it was said, I need it said so I remember to refer to written instructions and I need to see it in order to fully grasp. Multi-sensory learner? Yes, I think so. LOL
So, here we go. Starting down another path on which we’ve never before ventured. I’ll keep you posted.