Tag Archives: Family

It’s been a while…

Posted on by

Life has been extra busy for us these past few months… we’ve been renovating a home (which included modifications to help make Lily’s day-to-day life easier for us all), packing up, looking for caregivers, managing her ever-evolving health issues and squeezing in fun and laughter whenever we can.

We moved into the new home at the end of last month with massive help from her uncle Matt (thank you Matt!). Technically we are still in New York City but it’s so much quieter and friendlier up here. Lily’s been loving her new home, exploring the new neighborhood, and getting used to her new school commute (gone are the days of living in the building where she goes to school, we now have to drive her in).

Here are a few photos of her most recent adventures – which include her favorite holiday of all – Halloween!

Even after the visit, Lily STILL wants a pet pig!
She chose pumpkins and decorations for our new home…
Come and visit us soon! (Hopefully by then, all construction will be completed and the permits and ladders will be gone)

Traveling with your medically complex family member

Posted on by

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.

Rett Syndrome and a pandemic don’t mix together well

Posted on by

I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.

That’s why you’ve not heard from me in a while.

Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.

So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.

The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).

The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.

Hence the appointment with the Rett specialist.

A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:

1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.

2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.

I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.

Double Digits

Posted on by

This kid is going to be 10 in a few days.


In these 10 years, she’s beaten so many odds. She’s doing well. But there are still so many things that she can’t do.


I often think about the conversations we would be having if she could talk. I have them with her regardless, searching her face for answers. But what about the conversations she wants to have? The Tobii is great but it is so very limiting. This child has complex thoughts and feelings. I can see it in her eyes. And those thoughts mostly stay trapped in that amazing brain of hers.


And when I say that Lily is doing well, it’s not like when typical kids are doing well. Doing well for her means that she’s not having significant breathing problems, she’s sleeping (albeit with medication), that she’s still able to walk independently, hasn’t been to the ER in a while and is capable of swallowing food. She still needs 24/7 support as she’s unsteady on her feet, her hands don’t function and she’s nonverbal.


And nothing is linear. Not her growth chart. Not her capabilities. Some days her ability to swallow food gets so compromised that we have to purée her meals.


But there’s good news too. She’s getting taller, she’s gained some weight (over 5 pounds this year alone) and she’s progressing academically (even in a fully remote environment). She also continues to be super cool, super funny and silly and super optimistic.


I say to her every day ‘how did I get so lucky to be your mom? To have such a sweet, smart, tenacious kid!’ I am so proud to call her my daughter. Everyone who knows her will tell you that she exudes love and sunshine and acceptance.
And she’s busting to see all of you in person — to give giggly hugs and have dance parties and make you read her books.


Hopefully we will get the opportunity to see you at some point this year. I’ll try to send more updates through www.blueberriesandgiggles.com as I’ve been off social media for a few months.


But for now, we celebrate a decade of Lily. Ten years have flown by and I want to make damn sure that the next ten are superior to the last.
I wish I could give you a list of things Lily would like for her birthday, but she’s gotten most of the tangible things for Christmas (which was less than two months ago). If you feel compelled to give something, please donate to Rett Syndrome Research Trust as the best gift this kid could get would be a cure. The second best would be something palliative to mitigate her symptoms. Both are being researched right now.


Sending love and health (both physical and mental) to you all.


C

Winter wonderland

Aloha!!

Posted on by

Lily’s 8th birthday was such a success. In the lead up to her birthday (and the subsequent week), she was ecstatic. Birthday parties, Valentines Day and Hawaii? All in one month? It was almost too much.

But not really – seeing her so happy and (mostly) healthy – especially at this time of year – is such a relief.

We are day 3 into our Hawaiian adventure and this kid hasn’t stopped beaming. Thank you Make-a-Wish! Here are a few shots… leaving for Honolulu at JFK, getting a tour of the cockpit with the captain of the plane at landing, riding a limo (with Urszula), relaxing at the pool/beach and partying it up at a luau! More photos to come.