Category Archives: Inspiration

This area is for ideas – things that may or may not exist. I want to hear from parents, and attempt to help bring the equipment or technology to them that will actually work.
I also would love to hear about your projects that have worked. Is there something that makes your days easier that you would like to share on my site? Let me know!

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.

Death, simplified

I wrote this post not long after Memorial Day, and it got lost in the vault. I have taken an extended hiatus since Katie’s back surgery – almost two years ago now. I will be going into that more later. For the moment, I hope you enjoy this little bit of fluff.
This little memory doesn’t have a lot to do with anything. It is true that, as a parent of a child with lots of differences, I wind up trying to explain complicated things in simple ways – to children, to adults. I’m still working on it.

“These were people that died. We put their bodies underground. Then, we put a stone on top. But when I die, I’m not going underground, I’m going up to Heaven.”

This knocked me out of my own thoughts this morning. I woke up thinking about a friend who just buried her husband. A few years ago she buried her daughter. She put her eight year old next to the grave of her mother. This lady has way too much cemetery experience. (You can follow Karen at:
www.dflybuzz.blogspot.com
She can teach you all about grief and strength.)
Anna had her first cemetery visit yesterday. My parents put out flowers for family gone- for their parents, aunts and uncles, and for my niece’s dad, who died in a car crash last year.

So, how to explain the physicality of death to a five year old?

“Your body is just a house for your spirit. It lives right in the middle of you, where you feel joy. Some day, your body will die, and your spirit will break free and fly away like a butterfly. Your body will go underground, but you won’t be in it.

The people who love you and miss you will put a stone up to remember you.”

“Okay…?” This is what Anna says when her questions haven’t been covered well enough. “So… when do wasps die?”

When it’s cold? Probably. I went with that. At least I can take a decent stab at that one.

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?

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.

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.

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.

And when you can’t walk, I will carry you.

One of the first resources I came across after getting Katie’s diagnosis was a list group for agenesis of the corpus callosum out of the the U of Maine. The parents that made this group helped carry me through the earliest, most difficult times in this journey.

One lesson I learned: you can fire the doctors that don’t impress you. This sounds obvious in hindsight, but at the time, it was a revelation. We had a stack of specialists we were trying to see, and we waited months for most of those appointments. The idea of pitching that doctor back, and waiting again, and taking our chances again, well- it just hadn’t really even occurred to me in the early days.

On what seems to be a totally unrelated side note: don’t use waterproof mattress pads. This might sound a little counterintuitive – they are popular for a messy and expensive reason. However, I have a story that will tie it all together for you.

When Melinda was little, she threw up a lot. When her momma took her to a gastroenterologist, he said that her esophagus looked horrible from all the acid coming up. He also said there was a simple procedure to help keep the acid in the stomach (it’s called a fundoplication), but that because Melinda was ‘a retard’, he wouldn’t do the surgery. He suggested that she probably enjoyed forcing food up, and she would ruin any surgery he might do.

Um, yeah. Can you say ‘fired’? This mom did.

Melinda’s momma found another doctor, and this one did the surgery. It helped immensely.

So, back to the mattress protectors. Having a chronic vomiter, we all try to minimize the damage. One night, Melinda’s momma came into her room, only to find that she had vomited. The mattress protector held the moisture up around her face, and cut off her airway.

She was rushed to the hospital. Melinda had a seizure – they don’t know how long she was without oxygen – and exams showed that her liver had been damaged. A gastroenterologist was called in for a consult.

Guess who it was?

Why yes, doctor #1, or if you prefer, the retard doctor. (I’m sorry, I don’t approve of the use of the r word in any derogatory sense, however it is a repetition of this doctor’s use of words for the sake of demonstrating how little he understood his patient, so please forgive the language in this limited context).

Melinda’s momma heard him coming from the hospital room. She got up, went to the door, and blocked it. Arms out. Legs out. She made it clear to everyone involved with her daughter’s care at that hospital that this doctor was not to enter her child’s room, whether she was present or not.

And so Laura, Melinda’s momma, became one of my first mentors. That story, presented by this sweet, unassuming momma, helped me to understand that I am my child’s advocate. Me. Every time.

Years have gone by, but I saved those emails. They gave me strength, they gave me a boost when I needed it.

Thank you, Laura.

Today, I got this post from Laura:
“Melinda passed away peacefully today. Her Daddy and I were with her as well as her Auntie Pat. She was our sunshine girl and we were very blessed to have her in our lives. Huggles to all, Laura Ours (Melinda’s Mommy)”

I have no words. But sometimes, life just sucks, and there’s no way to make it suck less. Huggles to you Laura. You and Melinda will be in my heart forever.

Melinda