Writing letters part 2

The other day I rushed home from work because I was so curious as to WHO she wrote her first independent letter to.  And then my heart just melted.

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How cool is this kid?  She navigated through her pages completely independently and not only did she tell me a silly joke, but she told me she was happy!  Goodness I love her so much.

The next day, she wasn’t feeling so well.  She had a stomachache (which is unfortunately a frequent occurrence even though I do my best to stay on top of her digestive issues) and didn’t have a lot of energy at school.  But still.  This kid wanted to write another letter.   And this one was addressed to…

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Writing letters

My heart is bursting with pride. Sharing a note Lily’s teacher wrote today along with some pictures…

This kiddo had an amazing day! She’s been very interested in notes and letters (wanting to keep re-reading the notes you send in her lunchbox, very proud of the card she wrote for Christine’s birthday, etc). So yesterday and today we started talking more about letters. We talked about parts of a letter (greeting, body, closing) and Lily helped me sequence a letter that I wrote to Ms. Ariel. She was very into the activity (wanted it to be a secret and a surprise, and asked for “more” when the activity was complete). Then, she worked on her own letter. Christine, we sent it home in her backpack. We were blown away… she wrote it almost completely by herself, with nothing but some verbal prompts (e.g. “don’t forget, a greeting is like a hello…”).  She chose who the letter was for, what she wanted to say, and how she wanted to close out the letter. It was really great practice (writing work and using the Tobii), so I’m sure you’ll be seeing more letters in the upcoming weeks.

Today we also read a few more chapters of Junie B Jones and she was laughing hysterically at the silly parts. In one of the chapters, Junie is sharpening pencils (and attempts to sharpen a crayon in a pencil sharpener, which doesn’t go so well). Lily requested, “my turn,” so I took her to the office to sharpen a pencil. She seemed to think it was great fun! She once again did a fabulous job asking comprehension questions during the read aloud, and seemed very engaged. Once again, she was a total cuddle bunny today. At the end of the day, she kept going back and forth between me and Ariel, squealing, and leaning in for hugs. She also put her arm around each of us at least once, which was so exciting! She was very, very happy this afternoon.

See you soon,

Ellie

P.S. Lily and I had matching shirts on today, which she seemed to think was pretty funny!

Back to Work, Back to School

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:

  1. Mom working hard
  2. Lily letting me know what she thinks about Rett Syndrome on a bad day
  3. Excited about the first day of first grade!

Tellin’ time

orange watchA few weeks ago, Lily lost a tooth and got $5 from the tooth fairy.  She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch!  You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition.  A watch is the perfect accompaniment to this activity, no?  She’s so proud of this orange watch.

Earlier today, I got this text from Elaine and it made my heart burst with pride:

It was the most amazing thing watching [Lily] yesterday try and figure out on her own what the clock said… she kept looking at the analogue clock I brought, checking a cheat sheet I made for her and then making selections on the Tobii…  it was so exciting to see!

We are so lucky to have not only the Tobii, but also Elaine – the SLP/AT extraordinaire – to help us communicate with, and challenge this kiddo!

 

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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A visit to the library, with Teetee!

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I didn’t mean to keep you all hanging from my last entry. I did take Lily to the library as she requested. But we had an extra special guest with us – Teetee Angela from Florida!!!

Initially Lily was enthralled with the library. We read a few books, tried to find a few new ones (Teetee and I thought the book Chicken Cheeks was hilarious; Lily was ambivalent) and flirted with the idea of taking her to the ‘get ready for kindergarten’ program that was serendipitously starting while we were there. However, at that point she had enough and we left.

We had such a great weekend with Teetee.  Not only did we go to the library, but we went to Brooklyn Crab for lunch and went swimming at a friend’s pool where Lily had the time of her life.  We were so sad when it came time for Teets to head back to Florida.  Good thing we get to see her again in a few weeks!!

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Don’t go Teetee Angela!

 

 

 

 

Graduation!

I’m such a sucker.  Of course I had to buy the ridiculous preschool graduation photo.  I mean, it’s the cutest thing in the world.  Second to her class photo, which was taken only a few months befimageore.

It’s been a quick two years for us.  Lily has grown so much, both physically (at least 5 or 6 inches) and intellectually (see next blog post).  We’re going to miss that little cocoon of a preschool.  The teachers, the para, the therapists, even the administrators, are all amazing there.

And I was so touched when the principal asked me to give the preschool commencement address.  I wasn’t quite sure what I was going to talk about but I knew it had something to do with all of the wonderful people I have met, because of Lily.  Thankfully my little speech went off without a hitch.

However, the run-up to the graduation was touch and go.  I wasn’t even sure Lily was going to be well enough to attend.   A week or so prior, her appetite went.  Her sleep meds stopped working (again).  She started having severe panic attacks.  And she was getting clumsier and weaker.  It was a scary period.  The morning of graduation, I wasn’t sure whether to take her to the ER or to school.

Thankfully she woke up that morning feeling much better.  She even managed to have a little bit of her smoothie.  Shamekia (her beloved nanny) met us at our home that morning and helped us get to school.  Lily did not want to miss graduation.  She had practiced so much.  And you should have seen her up on that stage, dancing and laughing and feeling like a star.  It was a beautiful sight.

I’m so glad she went because she had such a fun morning.  She was surrounded by all the people that she loves – her mommy, her nanny (mommy #2 – in the yellow dress), her para Urzsula (mommy #3 – in the striped shirt), her daddy, teachers and therapists, past and present and all of her school friends.  She had a blast.  And thankfully she started eating and drinking again that day.  And from that day forward, she’s been getting stronger and stronger.

We’re still struggling with sleep.  And the panic attacks come and go.  But damned if we’re not going to have the best summer ever.

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