Category Archives: Medical

Traveling with your medically complex family member

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In the run-up to this trip (and even a few times during it), I’ve been thinking I’m crazy taking my Rett kid to Italy, especially when seizures aren’t under control*. And now here we are, and I know that it was 100% the right thing to do. Don’t get me wrong, it’s not always easy traveling with a person with complex disabilities. But it is well worth the effort if you can make it happen. I’ve listed a few practical tips for those who are considering traveling with their medically complex family member. This is also a helpful list for those traveling with small children.

1. Choose the best airline you can possibly afford (I looked into business class tickets but they were well beyond what I considered to be affordable). We flew Emirates which has a very roomy and accommodating coach class.


2. Book wheelchair support – once we checked in, everything was a breeze – from getting through security at JFK to going through passport control in Milan. No waiting time.

3. Book a direct flight. Minimize the transfers. The last thing you want is getting stranded in Munich airport for 2 days. And the possibility of lost luggage increases exponentially.

4. Pack all medications, supplies and a few changes of clothes in your carry-on. Don’t forget the iPad and charger too, along with a converter for when you arrive.

5. Bring help if you can afford it. We have been fortunate to have a caregiver who is more than willing to travel with us and go along on our crazy adventures (Sure, let’s stop off in Pisa for a quick visit!)

6. Limit the number of hotel or Airbnb transfers. Popping around all over Italy (or wherever you decide to go), moving from hotel to hotel is not something to aspire to on a trip like this. Day trips are great. Packing up your army of supplies every two days to relocate is not. 

7. Drive or rent a car. Train stations can be overwhelming and getting up and down stairs is downright tricky. My daughter can walk but some days are better than others. We chose not to bring her massive adaptive stroller, which would have been impossible to travel with on top of all the other gear we needed to bring. 

8. Research where to stay. We decided to go with an Airbnb because we needed a place that had a washing machine (she produces a lot of laundry) and a bedroom on the main floor.

9 Go with the flow. Not everything will go according to plan. But oftentimes, that’s where the magic happens!

10 Know how to explain (at a basic level) your child’s disabilities in the local language and always know where the nearest hospital is. Thankfully I speak Italian but I didn’t know a lot of medical terms like seizures or scoliosis so I made sure to learn them. 

Most importantly, live your life. When my brother and sister were planning this trip to Italy to honor our recently deceased mother, I knew that we had to go. Lily wasn’t able to make it to my moms funeral in Florida and I wanted her to be able to take part in this celebration of her grandmother’s life. And I wanted us all to be there with my brother and sister and their families. 

These are important things. And they matter. And I promise you, it is worth the effort. 

Buon viaggo!

*I got the ok from her epliptologist to go and a list of reasons to take her to the ER if needed – thankfully none of it was needed.

Sixth grade: seizures and screaming and scoliosis and Hope?

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This is not your typical beginning of the school year update. I don’t have time for nostalgia as we’re playing a thankless game of whack-a-mole and the stakes are terribly high. Where to begin….

Lily started having seizures at the end of May. We’ve been working with her neurologist to find the right medication but it’s a long process of trial and error. Seizures are scary. And they’ve been happening daily. This sucks.

Also, and likely related, she’s been getting easily overwhelmed. It started with sneezing and coughing – she’d break down crying whenever someone made an unfavorable noise in front of her (which curtailed our already limited social engagements) but now she’s been having full blown meltdowns. Daily. Usually in the afternoons. And for no known reason. This sucks too.

And as if those things weren’t enough, the latest result from the orthopedic surgeon show that not only has Lily’s scoliosis progressed, but now one of her legs is growing at a different pace. What. The. Suck.

The Hope? Well the Hope (not sure why my autocorrect keeps capitalizing this word but I like it) is that maybe going back into a familiar routine will help us all move into a new normal with less pain, less screaming, more peace.

And throughout all the hell this child deals with because of Rett syndrome, she still continues to have moments of calm and joy and positivity.

Thankfully, for her first day of 6th grade, she had a good day.

First day of school photo shoot

The latest

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The teeth could not be saved. She won’t have two top front teeth. Maybe ever. 

The good news (I’m grasping at straws here) is that she didn’t need a double root canal and the potentiality of the teeth getting infected in the future (which is what happened to me painfully twice) won’t be a cause for concern.  Her recovery will be faster. 

We will find a new normal. We always do. But this time it feels very different for me. Because it was an accident and I was there and if only I were a few feet closer, I could have saved her. I can’t stop her scoliosis from forming, I can’t stop her feet from deforming, I can’t stop her head from not growing. But I could have stopped her from falling. I should have stopped her. 

It’s been a harrowing few weeks, which included an ER visit earlier this week related to the first surgery. Pain management for this kid who has already been through so much has been tricky. Her voice is now hoarse from all the crying. 

Hopefully now, the true healing can begin.

Quick update on Lily

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Lily had her oral surgery today. The goal had been to fully resposition the teeth. Unfortunately the surgeon saw too much damage to reposition, so instead focused on shoring up the the teeth and roots with a bone graft and a tooth splint (like temporary braces).

Lily is home now and, though in some discomfort, she’s come around from the anesthesia and is watching Mary Poppins (what else?!?!).

We have more appointments coming up next week and will keep you posted as things progress.

The road to recovery… for us both

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Last week, a few days after Lily’s accident, Stephen gently nudged me out of the house to go to a previously scheduled yoga retreat. I was a wreck. I didn’t want to go. But I also didn’t want to subject my already traumatized child to a mother who was in break down mode. 

So I begrudgingly packed my bags and went to Mexico. It was beautiful. It was healing. It was filled with the most magical people and experiences. I was conflicted  the entire trip. But what kept me from ditching my retreat was the logistics of trying to find my way out of the jungle on my own. I could have done it. But it would have been a lot of work. And for what? Getting back one or two days early?

So I stayed. And I laughed. And cried a lot. And did a lot of yoga. And slept. 

Which is a good thing because Lily’s recovery is going to be far from straightforward. 

Lily will be having oral surgery on Monday (yes this coming Monday) to have her teeth repositioned.

Then two weeks later she will need root canals in both teeth as the nerves will be damaged when they move the teeth.  And after the root canal, the tooth that was chipped will be reconstructed. 

She’ll go under anesthesia for both procedures. 

The logistics of making this all happen and in such a quick turnaround has my head buzzing. Her dentist helped tremendously by making the dental appointments, including procuring an anesthesiologist for both procedures. But the pre-op appointments, the multiple calls with all the doctors, and the paperwork… oh the paperwork. Well, that’s mostly been on me.  And today Stephen is taking over as I’m heading to another previously scheduled day-retreat. 

Things are moving in the right direction. And for that I am grateful. I’m also grateful that I’ve got the most resilient kid in the world as well as the most encouraging and loving partner. 

But I can’t downplay how draining these next few weeks will be. So if you get a chance, send some positive thoughts our way. This kid, and her momma, could sure use them.