Yes, but what do YOU think?

I ran across this video the other day and to be honest, I’m not sure what I think of it:

I get the point they’re trying to make and I agree… but I also know that imitating a child with special needs is a time-(dis)honoured way of making fun of them, of mocking them.

Vegemite imitates Lil Z all the time and it doesn’t bother me, because it’s her sister and she is simply doing it to copy her, not with any malice. In fact, I’ve noticed that Lil Z sometimes watches Vegemite with interest when she does it.


But I don’t think I’d like it if someone else imitated Lil Z.

Maybe this is because I don’t think many people really understand Lil Z or her actions.

One time I was leaving Vegemite’s school when one of the other mothers said, “oh, look at Lil Z – I think she’s trying to get out of the stroller herself!” In fact, Lil Z was having a tonic seizure and I was heading double-quick time to the car to be able to deal with it.

Often, people are alarmed by Lil Z’s squeals and shrieks, worried that it is a sign she’s unhappy. On the contrary, that is what she does when she’s happy. Put on some Katy Perry and she’ll squeal along to the music.

Yesterday, Lil Z had a long seizure at school and had to be taken to the hospital by ambulance. I arrived at the school in time to climb in the ambulance with her. The paramedic repeatedly told me how she was glad I was there because she didn’t know Lil Z and couldn’t tell what was and wasn’t a seizure. It’s a fair point, since someone who isn’t familiar with her could take her jerky movements or periods of quiet reflection as seizures.

I know Lil Z better than anyone. I’ve been to more doctor’s appointments and therapy sessions than I can count. I have ridden in the back of an ambulance with her more times than I can remember. I can recite her medical history in my sleep. I carry a list of her meds and their dosage and strength in my purse. I am the link between Lil Z’s medical team, carers, school, therapists and family – the one who at least tries to make sure that everyone is on the same page.

And therefore, I expect Lil Z’s medical specialists to consult me. And they do. Which is great. Only once have I encountered a doctor who had no interest in Lil Z’s background or abilities, and simply told me what would be done. I’m very happy that we haven’t seen him again.

But sometimes, I feel that perhaps medical staff are relying too much on me. After all, I may be a specialist in Lil Z, but I’m not a specialist in gastroenterology or neurology or orthopaedic surgery. My knowledge on these subjects and more comes from a combination of Google, Facebook parent forums, and the occasional discussion with a doctor. I’m hoping most specialists we see have a bit more formal training than that…

Lil Z is going through a bad patch at the moment. Her reflux has worsened considerably. Her seizures have increased in frequency and duration. She wakes frequently during the night coughing, bringing up big globs of thick, foamy phlegm. She is sleepy during the day and some days she is so unsettled that she does little except cry.

I’ve tried everything to figure out what is wrong with no success. And I’ve asked multiple doctors and specialists, again with no success. Lil Z has had all sorts of tests run, but nothing has come back with even a clue about what might be wrong.

In the past month, we’ve been in the Emergency Department four times: twice for seizures, once for respiratory distress and once for general unwellness. We have also been admitted for 3 days (following the respiratory distress) in the past month. I am exhausted and at the end of my tether.

These trips to Emergency – along with her regular appointments with doctors and specialists – are focused on me as much as they are on Lil Z. Doctors question me not only on her medical history, but also how I think she’s responded to different drugs, the number of times she has vomited / seized / wheezed, and my general observations on her health. I worry constantly that I will forget details or not describe something properly and it will cause the doctor to miss an important clue about what is wrong with Lil Z. I know that if it was QB instead of me talking to the doctor, the conversation might be totally different. Not because QB and I disagree on Lil Z’s health, but that we notice different things and give different symptoms greater or lesser importance.

Our first trip to Emergency this month was because I believed there was something wrong with Lil Z (I actually expected they would find that her pneumonia had returned). They ran every test imaginable, none of which showed anything wrong. As the day wore on and I sat, cold and hungry, at the bedside of a little girl who after days of crying seemed content to sleep peacefully, and I questioned that anything was wrong. Maybe I’d imagined it. After all, the doctors couldn’t find anything and Lil Z seemed OK… By the time we’d had our last consult, I was riddled with self-doubt, exhausted and ready to go home. But really I wished that someone would tell me what I should do with Lil Z.

Yesterday at the hospital, the neurologist suggested that perhaps Lil Z wasn’t getting the full effect of her anti-seizure medication because she was vomiting the drugs back up. I told her that I’d had a discussion with her paediatrician about her reflux and vomiting. He suggested that the next step in the process would be surgical – either a fundoplication or a gastrojejunostomy (GJ) tube. The fundo is a procedure where they wrap her stomach around her esophagus to strengthen the lower esophageal sphincter in order to stop vomit and acid from coming back up as easily whereas the GJ is a feeding tube that is inserted into the small intestine, rather than the stomach, which again reduces the chance of her formula coming back up.

Both require surgery and while they could improve her quality of life, they will also add some restrictions. A fundo will make it highly unlikely Lil Z will ever return to eating orally whereas feeds need to be run continuously with a GJ, which means she’ll be constantly connected to a feed pump.

The doctor asked me what I thought and I said I wanted to wait until our next appointment to decide if we should go down that route. I hadn’t gotten my head around surgery, wanted to hear about others’ experience with the two procedures, and I wanted to give Lil Z a chance to recover from whatever infection or virus has been plaguing her to see if her reflux improved.

Now, a month on, I’m not sure I made the right choice. But I simply don’t know enough about it. How many vomits a day is “too many” and how many are in the category of “just live with it”? How long should she have a lingering cough before we decide she’s apirating? I’d like the specialists to tell me what to do, rather than asking me what I want to do. I know Lil Z, I don’t know gastro.

There was a similar experience last week when I took Lil Z to the Spinal Clinic. The doctor looked at the x-rays and said that the brace was correcting her curve, but that when she wasn’t in her brace, her curve was probably worsening. I was happy that the brace was working (I would have been very angry if I’d been strapping Lil Z into it for the past 6+ months for nothing). Then he asked what I thought about a spinal fusion. Confused, I said I thought the objective of the brace was to delay spinal surgery for as long as possible – at least until she stops growing. He said yes, but then commented that they would be relying on my feedback as to when we should start considering surgery. Huh? Surely as the specialists they are the ones who should determine when surgery is necessary. I know Lil Z, I don’t know ortho.

So, I get it. I know that Lil Z’s doctors are going to defer to me because I know her best. But that doesn’t mean they can’t make recommendations. I may know Lil Z’s medical history, but that doesn’t mean I know what is medically best for her.

And boy could I use some medical recommendations now. I am out of ideas, out of energy and living with the constant thrum of anxiety about Lil Z. I know her best. I know there is something not right. But I just don’t know what to do about it.


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