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.

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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

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…

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!

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 from the tooth fairy

Was anyone else aware that on top of all the more well-known symptoms of Rett Syndrome (like loss of language, physical disabilities, breathing problems, severe anxiety, sleep disorders), there are so many lesser known ones, like excessive tartar buildup?  Yup, my kid has that too.  So what does it mean?  We go to the dentist every 6 weeks for a cleaning.

Thankfully we’ve found a wonderful dentist who puts Lily completely at ease.  For example, the last time we were there for a cleaning, we had to get her two bottom front teeth pulled (her baby teeth had popped up behind them and were there for a while).  This kid didn’t cry once – not when they gave her the novocaine.  Not even when they pulled her teeth.  I cried.  But not her.

Earlier that morning, I explained to her what was going to happen.  And I told her that if we put her two baby teeth under her pillow, the tooth fairy will come.  She became very excited.

That evening, she and one of her therapists had a conversation about it and they wrote a letter to the tooth fairy.  All the words underlined were her exact words on the Tobii.  The tooth fairy found it when she was picking up her baby teeth and putting money under her pillow. And it made this tooth fairy extremely proud!!!

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