Tag Archives: cerebral palsy

Pneumonia, again

A couple of weeks ago, Katie got pneumonia again. The first time she had pneumonia, I was warned that her lungs were likely not ever going to be as strong as they were before, that every time it would be worse. But I expected her to stay healthy for more than two weeks.

I had started the conversation with palliative care on her prior hospitalization. Not because I didn’t expect her to get better, but because I have been in a frame of mind for quite some time that centers on Katie’s quality of life, rather than the quantity. Palliative care does not mean refusing treatment that would save her life. It really just means focusing on comfort care over aggressive treatments that could be traumatizing and leave her with a reduced quality of life from what she started with.

Somewhere over the last few months, Katie lost the ability to control her swallow, to protect her airway. So, she got pneumonia because food, or saliva, or who knows what got into her lungs. And she went to the hospital. And she was intubated for – 4? – I think it was four days. And she got better, and worse, and better, and worse. And better, but then had other interesting problems because now she can’t eat. So now we get to try to figure out what and how much formula to give her by g-tube. We were only giving her water and a little formula before. So, even though she’s had a g-tube for over ten years, I’m a newbie with this.
When she got sick again so quickly, I made sure to include palliative care right away. After a lot of discussion, I decided not to let her be intubated. I decided to take her home, because I would rather she be in a peaceful and familiar place, a comfy bed, and not in the place she so vocally hated.
The palliative care doctor came along. Yeah, wow – house calls? Well, with pediatric palliative care, where we live – yes. House calls. He was available to give her meds if she started getting distressed. He didn’t think she’d make it through the night.
She did, though. She kept breathing. Family came to tell her good bye. And the next night, she was still breathing. And the next. And then, she actually seemed to be getting a little better.
A week went by, and it was clear that she had decided to beat the pneumonia. All on her own. No intubation, no arterial lines, no oxygen (she HATED the oxygen mask last time – if she could voice words, I’m certain they would have been inappropriate for a children’s hospital.)
She isn’t back to her old self, and I honestly don’t know if she ever will be. But she’s breathing. She’s showing some interest in the things that interested her before, although she doesn’t express quite as much. I don’t know if we get a day, a week, a year before we go through this again. What I do know:
_ The grandparents are a hell of a lot stronger than I have given them credit for. I was afraid one of them was going to keel over from the stress, but I think I was the closest to having that happen.
– While my husband mostly lets me drive the ship, he will step up when I can’t find my voice
_ When people don’t know what else to do, they offer food and prayer.
_ I will never, ever in my life stop hearing the sound of my own voice answering the DNR questions in the ICU
_ My soul-sister special mommies contemplating hopping a plane to come support me… My bff responding to my asking her to come at the end of the work day with ‘I’ll be there in five minutes’… my other bff popping up with hot cider and a fanciful story I made up about Kate years ago and had totally forgotten… another bff popping up with food and showing her mommy heart, lavishing some needed fun and attention on my other beautiful little ‘un, my other bff showing up with a care package that included foods I loved when I was a ten year old…
_ I have an amazing tribe. I am so blessed.

All I want for Christmas

Does anyone else dread being asked what their kids want for Christmas?

The answer, in regards to my four year old girl, is easy. EVERYTHING. If there has been a commercial for it, she’s all about it. It doesn’t matter if she knows what it is – it’s on TV, and therefore she must have it.

With Katie, it just isn’t simple. Most ten year old girls want all sorts of things – makeup, nail polish, sparkly anything. Katie still loves to watch the TV shows she watched when she was two and three years old. I try to give her a chance to watch the latest Disney shows and boy bands, but her response is usually to start screaming. Smart kid.

Anyway, people ask me what they should get for her. I have to say, I hate this question. I hate it. I hate that I don’t have many good answers. I can tell people her clothing sizes. I can direct them to the baby toy aisle – anything requiring fine motor skills is out of the question. I can confirm that she still watches Sesame Street, and what videos she has.

I want more for her than this. I know there must be more out there that she would love. I hate that I can’t get it for her, but even more, I hate that I can’t even figure out what it is.

People mean well when they ask this question, but I’ve pretty much stopped answering it. I don’t have answers. This has actually led to a good thing. Now more people are brainstorming about what Katie might like. More people willing to take a chance on this or that toy. And that has resulted in Katie getting a few things I never would have considered picking up for her.

One year, her teacher gave her a singing dog. Like, LOUD. This cheesy critter dances in place and howls to the music. It has been adapted so that she can use a big switch to make it go. I never would have pegged this for something she would want.

She loves it.

So, this is what Katie wants for Christmas. She wants you to think of her, and to use your imagination. Maybe you’ll hit on something really great.

Mini vs. Mickey – the rematch.

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.

There and back again.
There and back again.
No tears over switching back.
No tears over switching back.

Life’s full of tough choices, idn’t it?

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.

Well, angelfish, the solution to your problem is simple.
Well, angelfish, the solution to your problem is simple.

Can you hear me now?

My daughter does not have a hearing impairment.

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.

Is this how you treat everyone?
Is this how you treat everyone?

Brush, brush, brush your teeth…

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.

The Surround Toothbrush
$5.00 + shipping at www.specializedcare.com
or free, if your dentist gives you a sample

Time saver or space waster?
Time saver or space waster?
In case you're traveling. Or if you want to call and order more. I don't.
In case you’re traveling. Or if you want to call and order more. I don’t.

I won! I won!

What’s your kid’s least favorite thing? Katie’s least favorite thing is her braces for her feet.

Katie's AFOs
Katie’s AFOs

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.

Silicone sleeve to keep the brace from hurting Kate's skin.
Silicone sleeve to keep the brace from hurting Kate’s skin.

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.

Well, crap.

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.

We’ll see if they all make it home.

Random monkey.
Random monkey.

These are a few of my favorite things…

Wow. That was SO COOL!

I was lucky enough to get to the Abilities Expo in Chicago this weekend, and it was awesome. (Yes, I am a child of the ‘80s. I also lived on the west coast for awhile, so I get to use the word awesome. Deal with it.)

It will take awhile to sort out the blur of all that was, but I wanted to mention of few of the most interesting things that I saw.

FreeWheel. – This is a single wheel, about 10-12” high, that hooks easily to the front of a chair with a standard footplate. You know how those tiny front wheels won’t go over anything? Yeah, solved. The FreeWheel (which has a fender – why can’t I get fenders for our back wheels?! – Question for another day.) turns in a way that your front wheels come off the ground slightly. This makes it a lot easier to push. The beefier front wheel also means the chair can handle rougher terrain. The inventor has collected pictures of users taking their chairs into the woods, on the beach, etc.
It also has an attachment for a rack: the perfect size to hold a grocery basket, bungee on your textbooks or set a baby’s car seat.
The downsides: the Freewheel only works with a standard type of chair. This won’t work on Kate’s complex chair. Oh, and it costs about $500. But, it’s probably worth it if does everything it’s supposed to.
www.gofreewheel.com

Freewheel's inventor. Necessity is a mother.
Freewheel’s inventor. Necessity is a mother.
This rack works well for a grocery basket or similar sized item.
This rack works well for a grocery basket or similar sized item.

Frog Legs – These are SO COOL! (Once again, child of the ‘80s, etc.) These were probably my single favorite invention at the whole show. I have been lamenting for years that Katie has such a rough ride. We can’t even go down the sidewalk without her head bouncing all over the place. These little shock absorbers fit above the little front wheels, and they DO work on a complex chair (YAY!). It’s a simple matter of switching out that front caster, so it doesn’t matter if the chair tilts, if the footplate is fixed, etc.
The downsides: I didn’t see one. Perhaps I’ll find some feedback that will fill that in, but right now, I’m just impressed. Unfortunately, I think I’ll have to wait to order ours until after Katie’s surgery this fall, as we may wind up in a new chair.
Cost: $350
www.froglegsinc.com

Mobility-Usa’s Grillo – I don’t know about you, but I have kind of a hard time with Katie’s gait trainer. I have to take it in to be adjusted every time she grows. She’s nine – she grows a lot. And, I can’t fit her and the Bronco in my can at the same time, which means I need to drop the thing off and pick it up separately. What to do?
Oh hey, let’s make it push button adjustable! Yes, I am about to spout out another great ‘80s word.
The Grillo is an anterior gait trainer, meaning the bar that connects the sides is in front of the user. It has articulating vertical supports (think of knees bending or straightening). You can change the ride height with nothing more than your unprofessional hands. It also has a padded strap seat, padded chest strap, and a handlebar instead of a tray. Our tray mostly just gets in the way, and is one more thing for Kate to bruise her arms on. The handlebar is also adjustable and removeable.
Oh, and did I mention this? – It FOLDS. No seriously – one of the gigantic pieces of equipment for my kid, and it doesn’t require a permanent parking space? This sucker will fit into a trunk!
The downsides: there is still some hardware that is probably within reach of flailing arms. I would be looking for ways to pad that. For some kids, the tray is very useful, and it doesn’t have that. Also, if someone really needed head support, I’m not sure how you would add that.
Cost: I’m sure it varies, but adaptivemall.com has them for about $2500 – $2800. They also have a posterior version, which might solve some of the padding and head issues. This is also DME, and if your insurance covers equipment, you may be able to get it covered with a good letter from your PT.
www.mobility-usa.com

This gait trainer raises and lowers with the touch of a button (or two).
This gait trainer raises and lowers with the touch of a button (or two).

There were a couple of things I was expecting to see, but was bummed (see 80s references) not to find.

First off, is there a sling out there anywhere that really works well for children with dystonia? I saw nothing new or innovative with transfers. One of these days, I will make something.

Also, I was expecting to see VPG there. The first vehicle purpose built for a wheelchair user, I wanted to see what they have coming up next. I also wanted to offer my suggestions about how they missed the mark the first time around. I know they would love me for that. No such luck.

Finally, some of the workshops were a little lackluster. The therapist from Shriners, who covered equipment and ways to make your own cheap versions, did a nice job. The guy who covered home modifications was basically a sales rep.

Overall, this was worth the trip. Admission is free, so if you can make it to one of the shows, it’s definitely worth the time.

You can check out their schedule at www.abilitiesexpo.com.

Don't Diss

The Accidental Tourist

You don’t know what you don’t know.

This truth has vexed me for years now. You mean there’s a fix for that? You mean there’s a thing that might make this other task easier? Okay, great! Why didn’t you tell me?

Oh,yeah. I didn’t ask.

I am getting better at asking questions. Sometimes, it gets me nowhere, but once in a while it pays off.

A while ago, I accidentally found out about a lower profile g-tube button. Then, when I was at the home medical supply store, picking up our monthly accessories, I mentioned the problem to the tech.

He told me I should go to the Abilities Expo.

Huh?

Yep, complaints work sometimes. It turns out, there is an event that’s held every couple of months in different cities. They showcase all that’s new and awesome in the world of disability. Check it out:
www.abilitiesexpo.com

Since Chicago isn’t too far from where I live, and the event was coming up soon, I decided I needed to check this out. After deliberation, my family decided that Katie would stay home for this trip. So, I’m on a scouting mission.

I can’t wait to see what’s out there.

Thank you. Now shut up.

Shortly after Katie was diagnosed, I was given a copy of the essay, “Welcome to Holland”. Odds are, you’ve read it. If not, go here. I’ll wait…

So, the Holland essay gave me a little comfort in the early days, and gives the overall message that things will be a little different, but they will still be cool.

Later, I read a piece called Schmolland. Read it, right? If no, you should – it’s great.

This one also spoke to me at a time when I was really feeling like I lived on my own planet. Play dates? No! Stress! Invites? What are the circumstances, will there be an easy escape, will it be during nap time, is there room for a wheelchair, is there a place I can change a four foot tall person’s diaper?

I still feel like I’m from my own planet sometimes, but much less than in the past. I know so many parents now, it’s like we made our own country. I have learned, finally, that this is normal. Not “normal” (do you see air quotes?), but really, just normal. I worry about my kids. Both of them. I rejoice in both of them. They give me utterly different causes for stress, and also very similar ones.

Every once in awhile, someone thinks they are complimenting me by saying something like, ‘I couldn’t do what you do! You’re so strong!’. Have you gotten this?

If you’re one of the people who says this, let me just say 1. Thanks. and 2. Shut up.

Parenting is not for wimps, and it isn’t for people who do things halfway. Are you a parent? Do you believe you couldn’t do it if your kid needed something more, or different, or whatever? Give yourself more credit. If you are faced with a challenge, you will handle it.