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?

The Plan

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.

The scoli surgery.
The scoli surgery.

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.

Pump, then scoli.
Pump, then scoli.

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.

Could be this, could be that...could be something else entirely.
Could be this, could be that…could be something else entirely.

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.

Current plan.
Current plan.

All. Bets. Are. Off.

Well, if all bets are off, there can't very well be any money, now can there?
Well, if all bets are off, there can’t very well be any money, now can there?

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.

iHusband

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.

Mine is the not-green one.
Mine is the not-green one.