What a ride

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.

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An almost visit to the ER

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.

Scenes from a snow day

As you know, the east coast was hit with quite the storm. Lily and I hunkered down and did our best to enjoy her day off from school.

We played dress-up, read books, watched movies and even went outside for a nanosecond. She doesn’t like the cold or the snow. She too must be a Floridian at heart like her momma.

Winters are not easy for Rett girls. Not only is it more isolating than usual, but also they struggle more with their health. Peeing, sleeping, breathing and eating have become concerns again in this house. For the most part, she’s staying positive. But she’s had more than a few moments of feeling miserable and sad. I’ve seen many more tears than usual these past few weeks.

We are both trying to keep our spirits up. It’s not so difficult to do as we are heading to Florida to visit our family next week. We are both excited to feel sun on our skin and sand under our feet. And of course see our relatives!!!

Stay warm.

Stir crazy

Yeah… we bad. We bad.

Actually, we bored!

Lily is ready to get back to school. She’s been sobbing intermittently for the past few days. Likely because she’s been cooped up and is missing her friends.  Or maybe today it’s because she’s not peed in over 18 hours.  There’s a lot of calculated guessing when it comes to figuring out what’s going on with her.

Anyway, it was pretty apparent when she came home to me yesterday evening that she wanted to go outside.

This is how she tells me she wants to go out… she stares at the doorknob wishing it to open

But as it’s currently hovering around 15 degrees Fahrenheit and she has zero body fat, there was no chance that we were going to venture out in the dark last night.

So today I planned a day of activity and fun! The American Museum of Natural History followed by lunch at her favorite restaurant Playa Betty’s.

Our first 20 or so minutes at the museum were tense. She was not pleased. But we finally made our way to the Native American section which she loves; she eventually perked up – her favorite music, Snapchat filters and bead displays helped. Lily spent about an hour roaming about looking at furs and feathers while I played bodyguard, blocking her from other museum patrons.

So the museum was mostly good, though exhausting as I had to carry her for much of it. And the other half was spent chasing after her.

Next on our agenda – lunch! The restaurant was 4 short blocks from the museum so I decided that we should walk. I mean… she was busting to get outside last night, right? Well it turns out that Lily likes the cold and snow even less than me. After about a half a block of walking/carrying, she burst into tears. Thankfully a taxi driver took pity on us and took us three(!) blocks to our restaurant. He was very kind and laughed along with me at my kids over-reaction to the snow.

Thankfully she ate her lunch – in between sobs – and I got mine packed to go. We braved the short block and a half to our home – amidst the sobs – and now we are home. And it’s only 2pm.  And she’s still not peed.

Wish us luck.

This is what she currently thinks of winter break.

The holidays

Lily was so excited about Christmas Eve that I couldn’t keep her still for a photo. She was literally squealing with joy. I was pretty excited too as we got to spend it with the Darlings, our beloved cousins.

I had forgotten how fast Lily can be. It’s been so long since I’ve seen her move like this. And she’s gotten taller. So it now takes about two steps for her to dart out of a room and down the hall. I got a lot of exercise chasing after her that night.  And I was so grateful.  Watching her run around giggling felt like a Christmas miracle given how she was doing last year at this time.

She was adamant about having her hair up in a bun with a silver hair tie.

Christmas Day she was feeling a little hungover from the previous evenings excitement. So we took it easy. Opened presents. Ate pancakes (courtesy of Stephen). And opened more presents. For lunch we went to Benihana. I think Stephen and I were more excited about it than Lily. We didn’t even realize that there was a Benihana restaurant in Manhattan until we started researching places to eat. Lily enjoyed the flying shrimp and the onion volcano, but not as much as the adults did!

Christmas day: Hibachi fun!

The rest of the day we chilled out at home – playing with our toys, reading our new books, wearing our fabulous new jewelry and feeling very loved.

Wearing her favorite bracelets (courtesy of Auntie Angela) while chatting with Grandma on Christmas Day.

For New Year’s Eve, we will likely have a crazy fun party. In mommy talk this means popping popcorn, watching High School Musical and in bed by 9. A pretty perfect sounding evening for me and my girl.

To everyone who showered my girl with love this holiday season: thank you! Lily felt so very special.  And so did I!

Big hugs,

C & L

Baby Animals

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Dreaming of having a pet bird

Yesterday morning while having breakfast, Lily told me that she wanted to look at baby animals – birds, cats, guinea pigs and dogs. So I pulled up some YouTube videos and we had fun watching these furry little creatures move around. She was especially fond of the kittens and birds. She eventually told me that she wants a pet kitten and a pet bird. I wasn’t surprised to hear that she wanted a bird. Last week, she fell asleep in school and was giggling in her sleep. When her teacher asked what it was she was giggling about, she said she was dreaming of having a pet bird!!!

 

Some of you may remember that we experimented with a pet cat back when we lived in Greenpoint, Brooklyn. Quelle disastre.

This mommy can’t take on any more responsibilities so instead of getting her a pet bird or pet cat, we will be taking her (often) to the pet store to visit her animal friends there.

Giving Thanks

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.

With Gratitude,

C & L