I can’t stand the cuteness!! Today was Superhero Day at school and Lily was Wonder Woman (costume courtesy of Uncle Carl and Auntie Alina). She loved her outfit so much she didn’t want to take it off, even for her after school physical therapy session (see bottom right photo of her rocking out on the stairs with her PT).
You wouldn’t believe it by these pictures but she was barely able to walk and was feeling emotional and uncomfortable earlier. She’s been extra lethargic these past few weeks, especially in the mornings. And this morning, the damned rash on her face came back with a vengeance. We have no idea what is causing it and it seems to come and go with no correlation to anything. And it’s super painful and itchy for her. Cortisone, bacitracin, even anti-fungal cream doesn’t do much to alleviate it. So far, what works best is a cold compress.
It seems like every day brings about some new, weird and random Rett symptom. It is a relentless and ruthless disorder. And through it all, my kid handles it with such grace and determination. She’s truly a Wonder Woman.
There is so much promising research happening with Rett Syndrome right now. For this momma, it’s overwhelming to digest. There are currently 3 clinical trials that Lily is eligible to participate in and all three offer the potential to help with some of her symptoms.
Clinical trials are no joke. We participated in one a few years back and it’s a lot of work. Lots of hospital visits and monitoring. And a new medication to remember to give her every day.
I’ve done a lot of poking around, reading medical papers, have consulted with two Rett specialists, a bunch of Rett mommas and have decided that Lily will be only participating in one trial. It should be starting in late fall and I’ll be sure to send updates.
In the meantime, we’ll just be enjoying life in our little oasis on the UWS, trying to get this kiddo to gain some weight. Come and visit if you’re in town!
C & L
We didn’t make it to Florida this past weekend as Lily was too weak to travel. It wasn’t because of her tummy (which was the big concern last week at this time) but because she was battling a fever.
I got a call from school last Wednesday telling me that Lily had asked to go to the nurse. When the nurse took her temperature it was hovering around 100 degrees. Not too bad but the poor kid was feeling miserable. And she wanted to go home. So I rushed from work to get her.
By the time we got home, she was her normal, bubbly self. But over the course of the next 24+ hours, she would swing from feeling fine to just plain awful. At one point she had the shivers so bad that I had considered taking her to the ER. (Sidenote: high fevers can trigger seizures and as Lily is already prone to them, it was imperative to keep her fever regulated.)
On Friday (the day we were supposed to fly out) I took her to the doctor where we ruled out strep, the flu and UTI. Likely just a viral infection. I was hopeful that we could get to Florida on Saturday but when I checked her temperature that morning, it was not good.
So we’ve been home in NYC on this cold and blustery weekend. Cuddling up a storm, watching movies, and enjoying the visitors who have come to help out and cheer us both up.
This is the first morning in four days that she’s not been feverish. So tomorrow she goes to school. I’m still taking the day off work. I need some time to recuperate!
We are both so sad to have missed seeing our family in Florida. But I’m so grateful that we were only battling a regular kid issue. Kids get sick from time to time. And Lily handled it all with such grace. She’s amazing.
I’ve said this before and I’ll say it again: Rett Syndrome is no fucking joke. Even for a relatively healthy and high-functioning girl like Lily.
Even though her team of caregivers and I actively manage her food intake and output, she still gets terribly backed up from time to time. Last night, however, was exceptional. She was in so much pain and was trying so hard. None of my standby tricks worked.
It was a tough call to make – do we spend the night in the hospital or do we ride it out at home? I’m so grateful to have a plugged in network of Rett moms to turn to in moments like these. And also so grateful to have had Shamekia the nanny (soon to be nurse) on hand with me for much of it. Stephen was on standby. And John came over to drop off supplies from the pharmacy. I felt very supported. But also very scared. And helpless. It’s in moments like these that I wish I went to medical school. I made the right decision last night to stay home. But that might not always be the case.
Thankfully Lily woke this morning with a smile (we finally had some success unclogging her late last night). She’s the most resilient person I know. She’s my hero.
Passing out on me last night after a tough few hours.
Even though our mornings start with me saying “Lily – breathe” “Scoot forward angel face” “Stand up – you can do it!” “Keep your feet under you baby girl” “Walk forward” “Lily relax your muscles” “Lily open your mouth sweetie” “Swallow your food honey” “Lily you need to eat something before going to school”, they are also filled with so much love and many giggles.
Her struggles continue. Some of her symptoms are getting worse. Some are easing up. But she still manages to put a smile on her face and bravely move forward with her day. I do my best to follow suit.
I’m grateful that this girl continues to persevere in the face of so much adversity. A lesser person would crumble. I’ve crumbled. But I dust myself off and remember that Lily needs me. I do not have the luxury of losing my shit completely. Though I do lose it momentarily, and preferably when she’s not around.
I am her voice (though she’s getting quite fluent with the Tobii), I am her arms, sometimes her legs, oftentimes her nurse, her doctor and always her advocate. Oh yes, and I’m her mommy. So we do our best to have as much fun as possible in between (and sometimes during) all those doctors and hospital appointments.
It’s the season of giving. And my ask to you is this: if you are considering making a charitable donation in the coming weeks, please consider giving to the Rett Syndrome Research Trust. We are SO very close to a cure; every dollar raised inches us to our goal. And all of our Rett sweeties and their families could use a miracle right about now.
C & L
A few months ago while Lily and I were flying back from Florida, we struck up a conversation with the woman sitting next to us. It turns out that this woman works in the media – in a pretty high-profile way. Vera had never heard of Rett Syndrome and was intrigued. And so we kept in touch.
About a week into my 5-week leave from work this summer, she interviewed me for an online magazine. We weren’t quite sure what the focus of the interview was going to be but it became pretty apparent with the first few questions that it was going to be about how the hell I manage working full time and caring for Lily.
You see – I was week one into a 5 week leave and it hit me in these first five days of not going into the office just how much I have on my plate with Lily. Managing her 4 caregivers, her 2 home-based therapists, her 15+ doctors, filling out medicaid paperwork, filling out private insurance paperwork, making appointments, thinking about her diet, writing about her diet, counting calories, carrying therapy over into the home, ensuring that I’m communicating effectively with her teachers and therapists at school ALL while managing a home (laundry? dishes?). Holy shit. I really didn’t know how I was keeping up. And now that I’m back at work, I’m still not fully sure how it all comes together. But it does (hint: super helpful caregivers and therapists/teachers). And so I continue – on most days, with a smile on my face. Because I really have the sweetest, smartest, bravest, funniest, coolest kid in the world.
If you want to check out our interview, click here.
Both Lily and I transitioned easily back into our routines. I returned to work with a clear head about the direction we were/likely are going in with the feeding tube. Of course my kid upended it all by devouring most everything in her sight after the appointment with her pediatric GI (who recommended a small feeding tube). So for now, the decision is still somewhat up in the air. She’s still eating well. But I’ve done my research, I’ve written out the pros/cons and I’m as comfortable as can be about this situation.
Which is a good thing as it’s been a crazy few weeks at the office. Thankfully my team held things together while I was out. Actually they did more than hold things together – they did a phenomenal job managing some really complex projects that arose during my absence. And the projects have kept piling up since my return. Currently my team is running multiple community fundraisers and assistance programs for employees who have been severely impacted by these recent disasters (the company I work for operates in over 100 countries and 500 cities). Additionally we hosted Cherie Blair (former Prime Minister Tony Blair’s wife and kick-ass advocate for women’s rights) for a conversation and cocktails the day after the earthquake in Mexico. It’s been both a a sad and inspirational time at work. So much devastation but also so much support for our employees (which my team and I are managing). And to top it off, a cool panel session with some awesome ladies.
As for Lily – she continues to have her ups and downs. But is loving school and her therapies. I’m getting notes from her teachers and therapists that she is blowing them away. I’m so proud of this hard-working kid.
From top to bottom:
- Mom working hard
- Lily letting me know what she thinks about Rett Syndrome on a bad day
- Excited about the first day of first grade!