D-Day

Tomorrow it will be three years since we got the Rett Syndrome diagnosis.  Sometimes it feels like time has stood still since that moment.  Sometimes it feels like time is racing by.  Sometimes I feel like I’m on top of it.  Sometimes I feel completely defeated.

These past two months have really put us to the test.  And I’ve been more afraid now than I was when I first heard the words ‘your daughter has Rett syndrome.’  I don’t think it’s because I was naive to what the future could hold. I’ve been cautiously optimistic that my kid would beat the odds and be healthy.  And we’ve taken every measure to try and make this a reality.

However, her health has taken a nose-dive as of late, as many of you know.  And I’m still looking for answers to what’s been going on.  But have come up with nothing new.

Physically I’ve noticed that she has been getting stronger.  Afternoons and evenings are better for her.  She can walk around most evenings completely independently and somewhat safely.  But mornings… they take my breath away.  And not in a good way.  Most mornings she is struggling to stand.  Some mornings, she can’t even get herself up to sit.  But when she is struggling, she has a smile, and a determined look on her face.  It’s almost like she’s saying ‘I’m going to have fun while fighting this.’  I try to take her lead on these things.  I really do.  But it’s fucking heartbreaking.

Just as she’s been seemingly getting physically stronger, a new symptom has reared its ugly head out which is putting a wrench on her recovery.  Breathing.  Or lack thereof.  The past two nights in a row, it’s taken her 5 hours to fall asleep.  Breath holding and hyperventilating for hours at a time.  She’ll fall asleep, but forget to breathe while doing so.  Which means that a few moments later she wakes up gasping for air.  It’s been this terrifying cycle to watch.  And there is nothing I can do but hold her hand and tell her I love her and that I’m proud of her and that we will figure this out.

In a few weeks she is going to have a birthday.  Six years old.  In many ways she is a typical 6 year old – she loves to play dress up and read stories and giggle.  But in so many ways she is not.  There are way too many hospital visits.  Way too many health issues.

The scientific community is inching closer and closer to a cure.  Some say it is a matter of 3-5 years.  This is not soon enough.  But one day, Lily will be rid of this Rett monster.  This is a fact.

For those who were considering sending her a birthday gift, the greatest gift you could give would be making a donation to the Rett Syndrome Research Trust.  In honor of Lily’s birthday and diagnosis day, I’ve created a fundraising page specifically for her.  I have an audacious goal of raising $100,000 by year end.  Help me get there.  Help me spread the word.

A cure is in sight.  And it can’t come soon enough.

Here is the direct link: https://rettgive.org/projects/a-cure-for-lily/

 

 

Home

We are so relieved to be home. And so grateful for the help we’ve gotten to get back here and get settled back in.

Yesterday Lily’s dad met us at the hospital and sherpa-ed us through the snow storm to our apartment.  I do not travel lightly with these hospital visits. Pillows, blankets, blenders, food – you name it, I bring it. We had a lot of luggage.

Once home, John started working on Lily’s hair while I started unpacking/doing laundry. He left shortly thereafter. I put Lily in the bath. Washed her hair three times, scrubbed her down, got her all clean.

Then I jumped on a conference call with other Rett mommas to talk about fundraising strategies.  It was a great way to wile away an hour of combing out Lily’s knots. But alas, her hair defeated me. EEGs and long hair do not go well together. I got through about half of the tangled mess.

At 5:30pm the doorbell rang with hot food from a wonderful Italian restaurant, courtesy of Beverly Salerno.  She just did it. Food just showed up.  Like magic. It was an amazing gift.

Stephen (my wonderful boyfriend of many months) came over a little later with wine and groceries. He set up our dinner while I fed Lily.  Then he watched her so I could finally shower off the hospital germs.  I’m quite the germaphobe for those unaware.

After I put Lily to sleep, we ate. It was delicious. I fell asleep on the sofa afterwards and when I woke an hour later, Stephen had done my dishes and finished the laundry. It was like waking from a dream!!

Today Lily and I are recuperating. Lily continues to have her ups and downs. Sometimes she walks well.  Other times she can barely stand. We have quite the road ahead of us. But soon enough we will be climbing those hills again.

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Playing dress-up yestersay while waiting to get discharged

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Visiting with Urzsula and Shamekia earlier today

 

 

Searching for answers

It started with her having 2 bad Rett episodes (shaking and freezing and groaning) back to back and then getting strep in late November. It was while we were in Florida for thanksgiving that I started to notice her left arm freezing. And then a few days later her left shoulder looking like it was getting pulled back and then a few days after that watching her entire body writhing (not convulsing) and knocking her to the ground.

So we did the home EEG. During a 24 hour period we saw two dozen of these writhing events. It turns out they weren’t seizures. However, she did have one seizure in her sleep the night of the home EEG that I didn’t even notice (she slept with me that night).

Before we got the results back from that EEG, I made the decision to put her on anti-seizure medicine. The meds initially worked. And then they stopped. And then she got even worse. Lips turning blue, breathing labored, mobility worsening. Zero energy. Little appetite.

So we went to the hospital. We were admitted yesterday and will be leaving tomorrow.

What did we learn at the hospital? Well these episodes we are seeing are definitely not seizures. This is a good thing. However what is going on isn’t entirely clear. The doctor says Lily had a growth spurt and it’s been exacerbating her apraxia. Basically what it means is that she’s having dizzy spells and her body has changed so much so quickly that she needs to relearn how to do all the things she was, up until recently, able to do. I know my kid well and I haven’t noticed any major growth spurt. But this is all we’ve got.

The Rett specialist says that this is just a bump in the road. It’s going to take months, and lots of physical therapy, to get her back to where she was 4 short weeks ago.

Right now Lily can’t walk without assistance and when she does walk, she now walks backwards mostly. She’s lost almost 2 pounds.

She has managed a few times in the past few days to emerge from the fog and be her silly Lily self. These moments don’t last nearly long enough. But when they do, my heart soars.

I’m trying to wrap my head around this new TEMPORARY chapter. Lily cannot be left alone for a moment. How do you cook? How do you get ready for work in the morning? I don’t know the answer right now but I’m going to have to figure it out fast. And I will. And this kid is going to get better.

The strength of motherhood

I hope everyone had a Merry Christmas.

I had a quiet Christmas day while Lily was with her dad.  It’s been a roller coaster of a few weeks – so many highs and way too many lows – so I’ve been looking forward to some much needed down time.

We’ve not yet received Lily’s EEG results but in the meantime, I asked her neurologist to prescribe her some anti-seizure medication while we are awaiting the results.  I couldn’t bear to not try something (and of course I’ve done countless hours of research on the topic so it’s not a knee-jerk reaction).  Lily had become a shell of herself.  And dammit if I’m not going to try every approach I can to help her get back to where she was 3 weeks ago.

Before Lily had her setback, my friend Carlos sent this note my way and it perfectly explains the joy, and pain, of motherhood.  And it’s even more relevant to me now than ever.

The strength of motherhood

Motherhood takes you to heaven and hell every day. It erases your past and amplifies it at the same time. It destroys and rebuilds you, slowly and carefully: replacing the cracked, broken bricks with stronger ones with no anesthesia.

Motherhood kills the old you; it doesn’t care who you think you are, only who you must be in this moment to meet the needs of the ones you invited into this world.

And somehow, by feeding that child, loving that child, wiping that child’s tears from their damp cheeks, pouring water over that child’s head as you sit beside them, uncomfortable and damp next to the bathtub, you become the gentlest of warriors.

Motherhood is a bridge that you walk alone, but as you look to your left and to your right, you see others on their own bridges, navigating the rickety planks of swaying wood. And as you see them struggling just like you are not to fall, it gives you the courage to take one more step.

Motherhood is painfully lonely, but at 3 o’clockin the afternoon whether you’re sitting on the living room floor with a child who doesn’t know your real name or at 3 o’clock in the morning with a child who needs your steady tapping on their pajama-ed back, you’re not alone because all over the world, mothers are doing the same thing. Their minds wander through the garden of their imaginations and memories, dreaming of sleep and rest, but powered by the fiercest of love.

The love that one pours into their child doesn’t come from the heart. Anyone can be in love. Anyone can be infatuated. The type of love one has for their child comes from the center of their bones. It’s the type of love that doesn’t need reciprocation to burn hot. It’s the type of love that never keeps score. It’s the type of love that powers nature in her infinite beauty and ruthlessness.

When a mother says, “I love you,” she doesn’t mean “I love how you make me feel” she means “You are my world, my sun and my moon and not life or death can change that, wherever you are I will find you whether it be across seas or lost within yourself. You are my breath and the light inside my eyes.”

Motherhood, while almost never glamorous, is always beautiful.

Written by:  Bunmi Laditan

Lessons Learned in Life

Motherhood has been the greatest gift I have ever received.  And I’m so grateful for my sweet kid.  She’s going to get through this and come out even stronger.  I just know it.

Wishing you all a peaceful and healthy new year.  See you in 2017!

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Opening Lily’s Christmas presents a few days earlier

The to-do lists are endless

My soul is hurting this week. 

I’m still fighting for basic Medicaid services (like diapers, overnight respite, daytime respite) while trying to prepare (and not completely flip out) for Lily starting kindergarten next month. 

I’ve had to postpone our move to the Upper West Side which means she will be in for quite a bus ride to and from school. So I need to make sure it’s as comfortable, and as safe, as possible. I’ve already gotten a doctors note requesting what must happen but trying to find the right person within the DOE to make this a reality is proving impossible.

Good news is that I’ve averted the ‘adaptive stroller’ issue for the bus but that was a research project and fight in its own right. And the fight is only half over. 

There’s always so much to do. The lists I have written down, and in my head, are endless.  So the idea of moving while all this is going on (and I’m not even adding the to-do’s from my job) makes my head reel. 

At the top of these lists (other than bussing and Medicaid) is to get her new school up to speed with her abilities, and needs (they’ve never had a Rett sweetie nor do they have experience with the Tobii), get Lily acclimated to a new school with new kids and new teachers, find a few new home-based therapists to replace those that fall off after pre-k (hint: this is not easy), and remind myself that it is all going to work out. Deep breaths. 

I wish I could say that Lily’s sleep has stabilized but that would be a lie. And the panic attacks, though less frequent for now, are still happening. 

The upside? Lily is keeping me laughing with her silly antics. Yesterday she kept pulling down her Peppa Pig artwork from the wall. Shamekia the nanny initially thought it was an accident so kept pinning it back up. But after the third time she found it on the floor, she asked Lily ‘you don’t like Peppa Pig today?’ And Lily scrunched up her face in a recognizable look of disgust, which means ‘no.’  And then she giggled about it.

Why my child doesn’t like Peppa Pig all of a sudden is still unknown to us. But I love that she is always finding new ways to let us know what she likes, and doesn’t like. 

If we (meaning me, Shamekia and/or her therapists) figure out why Peppa has turned into persona non grata, I will let you know. But for now, I will leave you with a visual of my kid admiring her art wall sans Peppa from earlier today. 

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We have food on our faces!

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Hopefully this is the last of the spa treatments for the week, a supposedly nourishing mask of oats, yogurt and honey. You see Lily and I spent the past two days in the hospital as she was finishing up the clinical trial on statins for girls with Rett Syndrome. The results will be published in August and it looks promising for some girls.  Thankfully we didn’t have to do a sleepover for this wrap-up but regardless, driving to and from the Bronx on Thursday and Friday was exhausting enough.

On Thursday she only had one ‘spa treatment’ – the breathing study which consisted of attaching 20 leads to her head, three straps around her torso, and one lead on her piggy. The set up wasn’t too difficult and it went rather smoothly. But then we had to sit there for three hours. I had to make sure Lily didn’t move around too much, or fall asleep. It was physically demanding for us both. We made the most of it – watched a few movies, read a few stories, and I even managed to give her a real spa treatment – a pedicure!

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Afterwards I took her for a celebratory lunch and a stroll at the Bronx Botanical Gardens. Mommy had a glass of wine while Lily socialized with the other diners.

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Friday we were back at the hospital bright and early. Lots of ‘spa treatments’ this day.  She started out with a blood draw. Brave kid didn’t even flinch when the phlebotomist put the needle in. Then we had an hour-long session with Dr. Sasha to talk about Lily’s emerging anxiety, her increased clumsiness, and her ongoing sleep issues. What many people don’t know about Rett Syndrome is that it is continuous and relentless. And my poor sweetie is struggling a lot.

After talking to Dr. Sasha and having Lily do a cognitive test (which thankfully was not at all invasive), we made our way down to the dungeon for the EEG.

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The test itself was only 20 minutes long. But it took over an hour to get all 27 leads on her head. The technician was an amateur. However, Lily was a champ throughout. We were giggling and telling stories and listening to music. I told her I would take her to the zoo afterwards if she wanted. But she was so tired after the EEG that we just made our way home.

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Once we got home, she had a few therapy sessions (she needed help with movement after being sedentary for such long periods of time). We had pizza for dinner. It was pizza Friday after all! However her appetite just wasn’t there. She managed to eat a few bites. Then she took an hour long bath, soaking the hospital visit out of her pores while mommy cleaned –  yet again – the glue out of her hair.

We spent the rest of the evening cuddling in mommy’s bed watching Mary Poppins. It was a struggle to get her to fall asleep (which is unfortunately the norm), but eventually she did and she slept through the night!

When she woke this morning, she had an angry looking rash all over her sweet face. I’m sure it’s all the tape and glue and alcohol and leads that has aggravated her skin. I have to go to the pharmacy later to pick up some calamine lotion because my at-home spa treatment did nothing for her.

And there’s another reason to go to the pharmacy today – I’m picking up her latest sleep medication. Hopefully this one will work. Us girls need our beauty rest, especially after this past week.

A beautiful sight!

 

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It’s official.  Lily loves Christmas.  Well, at least she loves the tree and the decorations.  This is now her favorite spot in the house. It warms my heart to watch her enjoy those twinkly lights.

It’s been a rough few weeks for us over here.  My mom’s not been well (but thankfully she’s on the mend) and Lily had one hell of a stomach bug last week which threw off her sleep in a way that I wasn’t sure either of us would recover from.

We’re both still recovering from it actually.  But she’s back at school and I’m back at the office and we are doing our best to stay awake during the day and ride the sleepless wave at night. And we’re BOTH looking forward to seeing Grandma and the cousins in Florida soon!

Happy Holidays to all you wonderful people.

Love,

C and L