Katie was a cheerleader. Anna changed her mind at the last second, transforming herself from a monkey into a ballerina. She is a ballerina at least five days a week, so it wasn’t too tough for her to make that swap.
My husband was busy with work, so it was just me and the girls. Anna is four, and this was the first year she was really excited about trick or treating. Katie, I think, can take it or leave it.
We started down the block, and got into a rhythm pretty quickly. Anna got over her stage fright after the first or second piece of candy. Once she had mastered the rhythm (ding dong, trick or treat!, thank you!), she was happy to to set the pace.
Katie had her own rhythm, in counterpoint to her sister. Roll up as close as possible to be seen from the door, wait for her sister to do her trick or treat routine, and wait. Katie can’t actually say, ‘trick or treat’, but she can smile and be adorable.
The treaters were suitably impressed with my little ballerina. After taking care of her treat needs, they would usually glance out and spot her sister. Most of them would give Anna a couple more pieces of candy, with instructions to give them to her sister. Three people brought the candy out to her themselves. There were also a couple who weren’t able to see her at all.
Over the last few years, I have become a fan of ‘trunk or treat’ events. I’m sure they have lots of redeeming values, but I only care about one. They are held in PARKING LOTS. Parking lots are awesome for a girl on wheels.
A couple of months ago, I found out that there was a newer, more advanced, more awesome version of the Mic-key button out there. It’s called the Mini-One. The Mini doesn’t stick out as far, so it makes life easier if you need a body brace, or belly crawl, or have a kid who likes to grab them and pull them out, etc. Naturally, I wanted one.
I jumped through the necessary hoops (why are there always hoops?), and got the new awesome thing for Katie. And… well, for starters, the largest diameter available in the Mini is a 14 French (4.6 mm). Katie had an 18 French (6 mm) button before. No big deal , but it did mean her stoma needed to shrink around the new button, and in the mean time it was going to be a bit floppy. Also, because the diameter is smaller, it is more likely to clog. I found this out the hard way. Katie’s Prevacid simply will not go through this tube. It clogs every time. I resorted to giving her this orally. It isn’t supposed to be chewed, but at least she was getting some of it.
Then I decided we had been better off with the old button. So, I tried to switch it back, but I didn’t have much luck with that. (See previous post for more on that.)
This week, it occurred to me that I could check with the doc about changing the button back. If it would require another surgery, that would be a deal breaker. But perhaps there was yet another piece of this equation that I didn’t know.
I called Katie’s gastro, and again was referred back to the surgeon. So, I talked with the the surgeon’s nurse, and she said they could probably dilate her stoma to get the larger button in. Woo hoo!
Well, okay, not totally woo hoo. Stretching out her stoma could be uncomfortable. So, I felt kind of crappy about that. But, having a button that fit her better overall, that did what we needed it to do, that didn’t sag – that outweighed the pinch of making the switch.
We met with the surgeon (again), and she asked about why we wanted to change back. Then she said that the last hospital she worked at had unilaterally sent all their Minis back – they hated them. So, I guess it isn’t just me.
Some people love the Mini. I think it has some neat features. In our case, though, the older technology is what works best.
Katie got her gastrostomy (feeding tube) a month before she turned three. Her pediatrician had been nudging us in that direction for the better part of two years, with Katie clinging by her fingernails to the third percentile all the while. She didn’t drop into that failure to thrive range, but the summer she was two I was able to pull the clothes back out from the previous year and put them on her again.
Why did it take so long to make that decision? Well, it’s complicated. I was a stay at home mom at the time, and we didn’t have any family nearby. So, I was pretty much completely immersed in my first child and her care. We spent years in feeding therapy, and it wasn’t uncommon for me to spend 8-10 hours a day feeding her one little bite at a time.
At the time, I had reservations that had more to do with me than with Katie or a procedure or anything else. I was pouring myself into her care. When it came down to really needing to take the surgical step, I felt like such a failure. I felt like if I had done things differently, better, whatever, she wouldn’t be in this position. I cried a lot the day we decided to go ahead with the g-tube.
I was also worried about becoming complacent. Working on feeding, going to feeding therapy, trying different equipment, trying a therapist someone else said was really good, searching for the magic food that would make everything work – it was exhausting. I was afraid that if we had the tube in place, I would give up. I wouldn’t do my best for my daughter anymore. I was so tired.
In hindsight, it was all pretty stupid. We were spending all of our waking hours on this, trying to keep the stress out of the equation, but of course that was impossible. Katie got her button, and we got the hang of using it. Prior to surgery, we had to give any meds precariously by mouth. If she needed Tylenol, I would take it and put a few drops on a little bite of bread, and feed it to her bit by bit. We called them Tylenol sandwiches.
We did back off on feeding therapy, and realistically, that was also the right thing to do. What kid wants to spend their life working on therapy? What mom wants to spend all their time with their baby pretending to be a therapist?
Katie learned to eat but she never did master drinking. She was nursed initially, and never would take a bottle. She also has a delayed swallow reflex, so liquids and anything thin or light is really hard for her to control. For the longest time, I felt terribly guilty. If only I’d just bottle fed her, maybe… Well, maybe lots of things. Maybe she would have been able to bridge that gap by continuing on a bottle into her toddler years, and who knows, maybe even to this day. Or, maybe she would have aspirated and died.
I’m done beating myself up over it.
We kept up feeding therapy for awhile, but eventually let it drop altogether. Katie hated it. I hated it. She enjoys eating, and does well with that. She still doesn’t like anything remotely smooth – no Jello or ice cream for this kid. She gets the rest of what she needs through her tube. She doesn’t mind this arrangement, and I have reached a point where I am at peace with it.
Every once in a while, a doctor will ask about this, and whether we are pursuing feeding therapy. I just smile, and let them know that we have what we need. It isn’t conventional, but what part of our life is? Different isn’t bad. It’s just different.
Katie uses a wheelchair. She rarely speaks – when she does, it’s either ‘yeah’ or ‘oh no’. If she feels apprehensive, she cries and/or screams. She feels apprehensive a lot.
Her hearing is flawless.
People are frequently intimidated by Katie and her complex wheelchair. Some people just give her a wide berth. But more often people are falling all over themselves to display their acceptance. Yeah, it is kinda cool.
When people who don’t know Katie want her attention, they frequently get right down in her face. Then they shout.
“HI, KATIE! I’M SARAH!”
Well, alrighty then. Katie might engage with this behavior, but more likely she’ll try to turn away from them, or yell back, in her own fashion – I would, too.
Katie has limited ways of engaging with others socially. She has preferences in how she’s treated. She enjoys being with a group, if they respect her boundaries and do something she likes.
All of this means that she’s just like anybody else.
When was the last time you met someone new? Were you a little apprehensive? Not sure whether you should offer to shake their hand, wave, hug, whatever? You probably opted for the least invasive greeting. You probably did not get six inches from their nose and shout, “HI! I’M ANGIE!!!”
The response probably wouldn’t be positive.
People with disabilities can be a bit intimidating, but they are just people. Just like meeting a friend of a friend at a party, you need to watch for their cues. Do the social dance. My daughter dances very well. Assuming you don’t shout at her.
So, Plan A involved having Katie’s back fused. She has an impressive curve at this point, and since she’s only ten years old, it has become clear that we just aren’t going to be able to avoid this.
So, we scheduled that. It turned out to be close to a three month wait.
In the meantime, Katie’s dystonia has been getting more and more difficult to work with. She yells every time her diaper is changed, every time I put her in her chair, etc. The straps that hold her in her chair are barely keeping up; she’ll bruise herself pushing against the straps that keep her from totally flying out of her chair. So, we have played around with her meds. That hasn’t gone well – which is about as positive a spin as I can put on it.
So, we decided to go ahead and do a Baclofen pump. Kate’s muscle doctor thought this was a great idea, and got us lined up with a neurosurgeon right away. The surgery for the pump would need to come before the surgery for her back.
We met the neurosurgeon. She is awesome – one of those rare doctors that is passionate about her work without forgetting that a whole person is connected to this interesting medical phenomenon. She wanted to check out a few things before Katie has any surgery. So, we scheduled brain and spinal cord MRIs. She also felt that Katie’s response to the variety of treatment we have tried so far made her a little skeptical about whether a Baclofen pump would work. So, we are going to follow the MRI immediately with a trial of the medicine, where they put it in her spine through an epidural and see how that goes.
If the MRI doesn’t show anything wrong, and if the Baclofen trial goes well, we will put off the scoliosis surgery and do the pump first. But, getting the scoli surgery on the books took a three month wait – now one month away. So, we haven’t cancelled that date yet. If we can’t do the Baclofen pump, then we could still go ahead with the original date of the scoliosis surgery. Provided that there isn’t something else apparent on the MRI, like a tethered cord. That would involve a different surgery, and all bets would be off.
So, there is a plan here. And it will fit together reasonably well in the end. Assuming that we can get the MRI done soon, and that goes well, and the pump trial goes well, too. Which should be good, since we’re scheduled to go do that next Monday.
And… um… assuming Katie stays healthy. Doctors are leery of doing any major testing, sedation, etc, when a kiddo is sick.
So yesterday, Katie was diagnosed with walking pneumonia. We have started meds for it. I talked with the hospital yesterday, and they are all bouncing around whether it’s okay to go ahead with the MRI and whatnot.
Today’s little product review… the Surround toothbrush
A couple of months ago Katie’s dentist gave us a free sample of a Surround toothbrush. I set it on a shelf and abruptly forgot about it.
I came across it the other day, and decided to give it a go. This is a toothbrush with bristles angling in on both sides. The idea is that you can brush your (child’s) teeth more thoroughly in a smaller amount of time than you need with a regular toothbrush.
Well – it might work. For someone. If that someone has a fairly large mouth, and is happy to open it to get their teeth cleaned.
Katie is not that someone.
I normally use a toddler size or just slightly larger brush to get her teeth cleaned. We also count when we do this. Katie loves counting, and it makes the task more tolerable for her to know that there will only be a few more seconds.
Katie gave the Surround brush a very definite thumbs down. While the concept might work for some, it is simply too big to wield in my ten year old’s mouth. I also could only move it back and forth on one plane – like sawing. Otherwise, the bristles would be down on her gums. Moving the brush around – a little here, a little over there – seems to make the process more acceptable for Katie. We’re going to stick with the little Snoopy toothbrushes from Target.
That said, someone in a different situation might find this brush useful.
How often do you take your child to the doctor/therapist/orthotist/DME person etc etc? How often does your spouse come along? I’m curious about how many moms take this on by themselves.
I see a lot of waiting rooms, with lots of people waiting. There are usually more moms than anyone, by my rough guess. But I also see dads, grammas, whole families in significant numbers.
My husband has been to relatively few of Katie’s appointments. In the early days, it was because I was at home with her, and his employer wasn’t very flexible about getting away. Now, he has his own business, so… well, his employer isn’t very flexible about his getting away.
We have been doing some long distance doctoring lately – about a six hour drive when I make the accommodations that Kate needs for a road trip. My husband hasn’t been able to get away for these trips very often – it’s just more time than he can spare as a one-person business. Normally, I brief him afterwards. This isn’t terribly satisfying for either of us, but it’s what we have.
Katie has some bigger care items coming up on her schedule. She and I took a road trip earlier this week. We met with a neurosurgeon, who had more to say than I would be able to relay back home in a five to ten minute call. Fortunately, this time I was able to bring my husband with me.
In my pocket.
I haven’t played with FaceTime much. If you aren’t familiar with it, it’s like the videophone of the future we imagined as kids. I see you. You see me. We talk. Mostly, I’ve used it to say goodnight to my babies when I was away. My husband is more savvy, so really, he should have been on the doctor end, but oh well. He set aside the time, and was able to be at the appointment, meet the doctor, and give his input. I was able to avoid giving Cliff notes by pointing my phone at the doctor.
My arm got tired pretty quickly, so I just set my phone on the chair next to me. I thought I had him angled pretty well, but later discovered he mostly just saw the ceiling at that point. I kept looking over at the chair next to me to say things to my husband, only to rediscover he was stuck in a five inch tall phone.
Overall, it was good. It isn’t a perfect solution, but it is a definite improvement over not having everyone there. I think we’ll be able to fine tune the process into something good.
So, today was Katie’s appointment with the neurosurgeon.
I was expecting a pretty basic meet-n-greet. This is a Baclofen pump, this is how we place it, etc etc. Let’s get this on the schedule quick and move on to the big surgery, which is already scheduled for October.
We spent a good 45 minutes with this doctor. She seemed a little preoccupied with Katie’s diagnosis. 1. Agenesis of the corpus callosum. 2. Cerebral palsy. 3. Dystonia. These all kind of flow together, right?
Well… sort of. Not exactly. Actually, many people with agenesis of the corpus callosum are walking and talking. Some of them don’t even know they are missing this part of their brain. Sometimes this is an incidental finding when someone needs a brain MRI for some other reason.
Of course, this is a spectrum that affects people differently. I know several other kids with ACC. Some of them walk, some of them don’t. Some of them talk, some of them don’t.
Anyway, this doctor (who is Harvard trained, and has a seriously impressive CV) was a little concerned that something might be getting missed.
We haven’t had much luck with oral meds or Botox to help Katie’s muscle tone. So, the Baclofen pump might not work. This means the Baclofen trial, where they give her the drug by epidural to see how she responds to it, is back on the table.
She also wants a spinal MRI (which the orthopedic surgeon hadn’t mentioned to date. Great, let’s take my confidence in him down a notch.), and a ‘quick’ brain MRI. She is wondering whether Katie might have a tethered cord. This is a structural anomaly at the bottom portion of the spinal cord, and can have an impact on the lower part of the body. It is usually pretty fixable with surgery.
So, we agreed to go ahead and do the trial and do the MRI – hopefully together. Then we moved on to the next appointment.
Doctor B (appointment #2 for the afternoon) had talked with Doctor A. She had intended that we would skip the trial portion, so she was backpedalling a little. Doc A was hoping we could administer the trial dose while she was still under the anesthesia from the MRI. Doc B says this won’t work, as we won’t know what result comes from the anesthesia and what comes from the drug. Also, to do a single dose trial, she would need for Katie to be cooperative and to hold still for a lumbar puncture. (Oh, did you hear me laughing hysterically? The rest of Minneapolis did.)
So, now we need to schedule a MRI. We need to schedule a drug trial that sounds like it could be 2-3 days in the hospital. I still have no confidence in this trial, because Katie hates (HATES!) all things medical, and sitting in a hospital is guaranteed to result in a very grumpy kid. Also, with the epidural, she won’t be able to be in her chair, which is one of the things that is currently a challenge, and where we’re hoping to gain some relief.
Then I asked the million dollar question. If oral meds don’t work, and Botox doesn’t work, and the Baclofen pump isn’t a good option… what do we do about her muscle tone?
Doctor B had to pause at this point. Her first response was pretty telling, though.
“I would refer you back to a neurologist at that point, to see if there’s anything they could do.”
Translation: there isn’t anything more I can do.
But she was still chewing on it. She wanted something to give me, clearly.
“There is deep brain stimulation.” She looked thoughtful. “We do have a doctor here who does that. It usually works best for people who have primary dystonia from a genetic defect, but it might be an option.”
Did you just hear me sigh? The rest of Minneapolis did.
So, the doctors are going to have a confab about my little sweetheart. Doctor A and Doctor B have both promised to get back to me by the end of next week. Not what I expected or what I was hoping for on this trip.
And now, I have something new to research. Which means I won’t be sleeping any time soon.
What’s your kid’s least favorite thing? Katie’s least favorite thing is her braces for her feet.
Scratch that. Her least favorite thing is getting casted for the braces for her feet. She has expressed herself so thoroughly on this fact that I think she may have actually caused some orthotists to leave the profession.
Regardless, we need them. Because Katie has good range of motion in her feet (and because she really, really hates them) we only wear them for standing exercises.
I haven’t been doing much of that this summer. Normally, Katie goes to summer school, so she would wear them then. This year I decided we should have a real summer, and I barely put her in them at all. Getting her into a stander or gait trainer has become a real challenge for me physically, so we mostly let them gather dust. Katie doesn’t mind.
Yes, yes. My bad.
A few weeks ago, I was doing some cleaning, and I noticed one of the inserts for her AFOs (ankle foot orthotics) was missing. Her braces work in two parts – there’s a hard outer shell, that protects and gives structure to her ankle and foot. Then there’s a silicone sleeve (sock?) that protects her skin from the hard outer shell. One of the sleeve/sock things was not with the rest of the stuff.
My three year is fascinated by Katie’s orthotics (like everything else of Kate’s), and occasionally she gets hold of the braces and tries to wear them. (Yes, once again, my bad.) My first thought was that perhaps my littlest had taken off with it.
After a thorough tossing of the girls’ toy boxes, dressers, beds, and closets, I came up empty.
So, school is about to start in a couple of weeks. I have three fourths of Katie’s AFOs. What to do?
I stewed on it for a few days, sure that the stupid thing would turn up. Nope. So, I swallowed my pride and called the clinic. I was routed to Mark, one of three orthotists.
Mark checked on when the last casting was done, and said the company might still have it. He checked and called me back within about fifteen minutes. No problem. Yay!!! I was really starting to sweat that I might need to buy a whole additional set of hateful AFOs over this.
The company did still have the impression of Katie’s foot, and Mark said it would only take about a week to get it.
So, I walked around for a few days with a little boost of having something gone my way.
A week went by.
Another week went by.
I tend to lose track of things that aren’t right in front of me, demanding my attention (read: mommy syndrome). I suddenly realized school was about to start, and I hadn’t heard back from Mark.
Okay, time to get annoying. So I called the clinic. I asked for Mark, in orthotics. “Which Mark in orthotics?”
Umm… what? You only have three orthotists, and two of them are named Mark? Are you kidding me? Come on, at least give one of them a nickname or something!
They routed me to one of the Marks, and I left a voicemail. The next day, noone called me back. Of course, I didn’t realize this until 5:05…
The following day, I called again. “Which Mark?”
“Heck if I know. I think it was the one with the curly hair, but I just talked to him on the phone.”
That caused a pregnant little silence. Then I was shunted off to a voicemail again.
The next day, after explaining again, I was routed to a medical supply person(s voicemail).
On Friday afternoon, I realized (again – remember the mommy syndrome thing) that this stupid issue still wasn’t resolved, and the first day of school was Monday. So, I called again, and pled with the receptionist.
She got the nurse to call back, who figured out that the stupid little silicone sleeve/sock thing was actually there. Did we want to come and pick it up, or just wait and get it during our appointment later next week?
Um, yeah – now, please!
So, at 4:15 on Friday, I loaded up my ten year old and my three year old. We got there in five minutes.They took about five minutes to confirm that the new one did fit Kate’s foot, and we were off!
So, this morning Katie went off to her first day of fifth grade with all of her accessories in place.
A few months ago, I decided to get a slightly different access port for Katie’s tummy. She had the MIC-key. We switched to the MINI-One. Our local hospital system put us through a few hoops to do it.
The new button is a little smaller than the old one, which is why I wanted it. Katie wears a body brace, and having a button sticking out of her tummy can be a real pain. The new button is also a little smaller in diameter, which I wasn’t expecting. This means it clogs easier. Also, Katie’s stoma (the hole the surgeons made to gain direct access to her tummy) was a little big for the new button.
When Katie got her first button, we were warned that it’s very important to keep it in place at all times (like we’d take it out for the fun of it.). We were told that, if her button came out, that stoma could start to close itself in a matter of hours.
Three months (or so – not looking back at dates right now) later, and the new button still fits a little loosely. That means that I either need to put gauze or some other absorbent material around Katie’s button before I give her a feed (which I basically never remember to do), or she winds up with a soggy tummy (shirt, skin, etc.). So, apparently her stoma isn’t going to close up in an instant if her button fails.
I told my husband the other night, ‘I’m thinking about going back to the MIC-key.’.
‘Why?’ He asks.
‘Well, this one is still loose. It’s a little harder to get the extension seated. And it really isn’t that much different. So, we might as well go with the one that didn’t clog every time she gets her Prevacid.’
Okay, so that was settled. Easy enough, right?
Yesterday morning, I decided to change out her button. I try to change it on a schedule anyway – after the first one surprised me by breaking after only six months (read: earlier freak out warning). So, I got all my supplies ready. New button (old style), little syringe ready to fill it, empty syringe to empty the old button for removal,a little Vaseline for the new button, a washcloth. Yada Yada.
I took out the old button. Easy enough. I went to put in the new (old style) button. Hmm – not so easy! And Kate yelled at me. So I tried again – sometimes you have push a bit to get things right. Nope. Apparently, while her stoma hadn’t shrunk enough to seal things up, it had shrunk to the point the old buttons won’t fit anymore.
Fortunately, I did have a replacement MINI, so I went for that.
Turns out, those aren’t that easy to place, either. I prepped it like I always do, and went to put it through her stoma.
Hmm. Bendy. The stalk is so slim, it just wanted to bend to the side instead of going straight through. I could make an x-rated comparison here, but that’s all I’m saying.
It took a few tries, and eventually I had to just grab it up close to the tummy side. We got it placed, but Katie was Not Happy.
So, we’re sticking with the new button. While there was no good reason for the hospital to make us see a surgeon to get the new one, that’s exactly what we would have to do to make her stoma bigger again. Therefore I changed my mind (again). The new button is freaking awesome.
As I went to throw away the copious amounts of packaging, I found what looked like a little golf tee in the MINI’s case. Huh.
So, I dug out the instructions (you get a book with each new button, along with a cubic foot of packaging). Interesting… it turns out that some people have a hard time placing these buttons, because they are kind of squishy. So, the manufacturer includes this little golf tee thing to put in the button and stiffen it for placement. Then you can take the golf tee back out, and you’re good to go.
My bad. I guess I should have read the directions.
Saying you shouldn't be unhappy because someone else has it worse is about as smart as saying you shouldn't be happy because someone else has it better.