Note from school

This note came home on picture day:

Lily had a fantastic day!  She was so excited for picture day.  She looked like a model in her pictures.  She posed very well for the photographer.  She worked so hard the rest of the day.  Lots of energy today!  Miss Ariel (one of Lily’s therapists) said, ‘Lily, I want to hear your voice.’ And she yelled for us!  She also requested ‘clementine’ ‘smoothie’ and ‘juice’ during snack time.  Then she said it was ‘yummy.’  Also, one of her teachers was talking to Lily and the teacher said, ‘I’m not sure if you heard me Lily’ and Lily replied (via the tobii, with zero assistance), ‘I understand.’   This kid!

We get the photos in a few weeks.  I’ll be sure to share them.

Thank you!

The other week I launched a matching campaign to celebrate Lily’s birthday.  I was overwhelmed by the donations that came pouring in.  Within 24 hours, we had raised well over the $1500 target.  The campaign is now at 12% of my fundraising goal for the year.  Obviously we still have a ways to go but please continue to share this link with family and friends near and far.  We are getting so close to a cure and holy cow do we need this now more than ever.

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Scenes from a Lily Poppins Birthday Party!

Celebrating Lily’s birthday

On February 8th, Lily is going to be six years old.  In honor of her upcoming birthday and my unwavering desire to obliterate Rett Syndrome, I will match up to a total of $1500 donated to her RettGive.org page between today and the 8th.

I’m so proud of this kid – she literally smiles in the face of adversity. I see it every day when she’s struggling to stand, walk or breathe.  I see how hard she works to do – well – almost anything right now.  I pray for the day when Rett Syndrome will be just a painful memory.

For those who have already generously donated… from the bottom of my heart, thank you! Your support and love is palpable.  For those who’ve not gotten around to it yet, or don’t feel that giving $10 or $20 will make a difference, believe me when I say that every dollar counts.

Lily is the bravest, sweetest, smartest, hardest working almost 6 year old that I know. And I know that one day in the near future she, and her Rett sisters, will be cured.  But without funding, it will remain a pipedream.

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.

My Christmas Wish

It’s a cure for Rett Syndrome. Seriously, it cannot come soon enough.

I went on Facebook earlier and saw that created a slideshow of my recent photos. It made my heart break to see them as it shows just how much my little girl has been struggling these past few weeks – things we all take for granted like breathing, eating, walking. If you’re considering any end of year giving, Lily, her Rett family and I would be eternally grateful if you gave to reverserett.org. We are also accepting prayers and positive vibes.

love,

C & L

PS we are anxiously awaiting eeg results. PPS if you ever find yourself needing to take your kid in for an extended eeg (which is a frequent occurrence for girls with Rett), I highly recommend you try to get it done in-home. PPSS if you ever have a week like Lily and I had, I also recommend that you get as much support as possible. We were lucky to have the fabulous, multi-talented uncle Carlos in town visiting us from Geneva.

To supplement or not to supplement

Recently on one of the parent groups, a question was asked about whether or not it’s worth buying expensive supplements for your kiddo. I thought my response could be helpful to other parents on a similar journey so I’m sharing here:

I’ve been using Agape on and off for years. When I can’t find it or afford it, I use the stuff you get at wholefoods ‘child life’ I think is the brand. I also have used and am using a mix of other supplements for my kiddo on top of this. And have I seen results? How can you really know? And what results are you looking for?

My daughter isn’t ASD (autism spectrum disorder), she has a disorder that, among other things, can cause growth issues (i.e. head and feet and other body parts stop growing) and failure to thrive because of malabsorption in the gut. She also has sensory issues and struggles concentrating. She physically cannot sit still due her her disorder.

So what have I seen? Well one thing is that she is on the growth charts. And continues to grow (though her weight is very much on the low end of the charts, but so is mine). I also see that she is healthy. And is getting better at paying attention. But is it just because she’s maturing? Is it because she got lucky and doesn’t have the growth issues that the other girls with Rett Syndrome have?

I don’t know. But I’m going to keep supplementing her and ensuring she eats the cleanest and healthiest foods possible (she’s on modified GAPS) because it can’t do anything but help.

If you’re not comfortable paying for Agape, why don’t you try the child life supplement to see if it’s something your kid will even tolerate before investing in a big, expensive bottle.

This SN parenting journey is not an easy one. And I’ve realized that we can’t do everything all the time. So pick and choose the things you believe in and think can help your sweetie be the best kiddo s/he can be.

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Long and lean, happy and healthy!

Lily’s favorite things

Two years ago, right before Lily was starting preschool and I was in the height of mommy flip-out mode, I wrote a 5 page document about Lily’s favorite things which I gave to all of her teachers and therapists.

Two years on, I find myself in the same place.  Freaking out about her going to a new school – new teachers, new therapists, new friends, a new routine.  And so I revisited the ‘Lily’s favorite things’ list to update it for kindergarten.

I’m not going to lie.  A lot of it was heartbreaking.  I had to remove all of the things Lily was able to do at 3, but can no longer do at 5, like:

  • Shooting hoops: Lily can pick up tiny basketballs and puts them in the basket. She even independently bends down to pick up the ball from the ground so she can put it back in the basket.
  • Turning the pages of the books we are reading. And we often prompt her to use her pointer finger to point to an item on the page (dog, moon, bird, etc..). If you start by asking her ‘are you ready?’, she will most likely reply, ‘I’m ready!’…
  • Approximating the word ‘omelet’
  • Approximating the word ‘berry’

I try not to get mired in the depression of the regressions.  It’s not easy.  But I will continue to be proud of all the other things she can do, like:

  • Dancing: in preschool, she was known as the disco diva as she would always try to start a dance party during class-time.
  • Running: Lily has really gotten into walking fast (almost running) when outside and she gets a huge grin on her face once she gets booking.
  • Walking up steps: she has a lot of determination and likes to challenge herself. Sometimes she will need an extra hand to step up but she’s getting to the point where she can independently walk up a few steps without assistance.
  • Hiking/climbing hills: maybe it’s because she loves the ‘Elmo climbs Mount Biggest Everest’ episode so much, but this kid loves hiking up hills.
  • Climbing on furniture: just the other day, I turned around and ‘poof!’, this kid had figured out how to pull herself up to stand.  On my sofa.

I’m going to work with her new therapists to try to get her back to being able to shoot hoops, turn pages and talk, and more!  We will get there.

But wow, what a difference two years make!  She’s grown into such a sweet kid, who’s almost 4 feet tall.