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!

Scenes from a beach vacation

Holy cow have we been having fun! From the Cape to Shelter Island, Lily and I have been surrounded by laughter and love – from old friends to new.

Here are a few photos which capture some of our adventures. If you want to see more, let me know. As usual, I took too many pictures of this sweet kiddo.

Our first full day in the Cape (with the Bernsteins!) was your typical romantic New England weather: chilly and gray! We spent the day reading books at the beach house and in the library. Hint: the Wellfleet library has an amazing kids section that rivals the old FAO Schwartz on 5th Ave – complete with costumes and stuffed animals.

We also had a lot of fun using the Snapchat filters once all the books were read.

The next day, the clouds parted and we went to the beach. While we didn’t find any mermaids, we did see some seals!

And the following day was more of the same: perfect company, perfect weather and perfect waves! The ocean was too cold for Lily to go in and it was almost too cold for me. But I braved it and jumped in.

The next day, we embarked on the second part of our beach vacation: Shelter Island!! Lily and I had the most fun time riding the Cross Island Ferry on our journey. I think we ran around that big boat at least 3 times. And of course, Lily made a bunch of new friends on the ferry.

We spent a week in total at Shelter (thanks to the Nelsons!!!). The weather was beautiful and the beaches were lovely.

Our first day out there we met up with the Rogers family in New Suffolk to watch the boat races, which has become an annual tradition. This year we had the addition of Elaine, Lily’s SLP and our family friend.

Lily and I took a much needed break from the sun on Friday and met up with Stephen (who came out for the weekend) to ride the carousel in Greenport. We also had the opportunity to see our friends Maren and Ben DeSantis too.

On Saturday and Sunday we hit the beach with the Nelson-Dollar clan. We spent both days searching for mermaids but only found mermaid toenails (i.e. magical looking shells that come in all colors of the rainbow).

And on Monday, Lily and I watched the eclipse, borrowing eclipse sunglasses from our newfound friends. I’m telling you – this kid is super social.

Lily is now on the second part of her vacation – the Poconos with her dad. I’m also on the second part of my time-off – the Sivananda yoga ranch upstate. I’m going to miss my sweetie so much but I’m looking forward to getting some down-time. I’ve got some big decisions to make about Lily and need to process it. Though we had a great trip, her appetite was a big struggle. And even when she was hungry and wanting to eat, it would take upwards of an hour for her to have a meal. It’s not been heartening. But I’m grateful to have had the time to get to learn as much as I can about my kids struggles, and her abilities.

Om Namah Sivaya.

Some good news

The week started out tough.  Lily got a ‘failure to thrive’ diagnosis on Monday from the nephrologist.  This is like getting (as one wise Rett momma so eloquently put it) a punch in the gut.  Hearing those words, especially as a mom, well… the guilt and disappointment and anger is indescribable.  I walked away from that appointment trying to not feel like a total failure as a mother. Thankfully my kid was being extra sweet and silly which helped shake me out of my funk.

The next day I got a video from school showing Lily holding onto the handlebars for close to 40 seconds while riding a bike.  This is HUGE.  Her hand function has slowly been improving over the past few weeks.  I can’t post videos to this site so you’ll have to settle for a screenshot instead.  If you’re on Facebook, I’ll be posting the full video shortly.

And then this morning, we had to see her pediatrician to get his signature for a Medicaid form.  They do not make it easy to get, nor maintain Medicaid but holy cow am I glad that Trumpcare failed because I’m not sure what we’d do without it.  But I digress….  We did a weigh-in at the same scale we used 5 weeks ago and according to the scale, she gained 2 pounds.  It’s taken a lot of effort – and patience – for both Lily and her nannies, therapists, teachers, parents, etc. to get here.   And we’re not done yet.  She’s still 3 pounds away from where she was 6 months ago but she’s starting to gain it back.

How did she gain 2 pounds in 5 weeks?  Well, Lily’s been on a steady diet of home-made mac-n-cheese, duck, tater tots, cupcakes, avocados, yogurt, pudding and pizza.  I’m still slipping in super healthy stuff for her morning smoothies to ensure she’s getting the vitamins and minerals her body needs.  But she’s basically eating anything and everything she wants.

In two weeks we are seeing the GI doctor to discuss further this ‘failure to thrive’ issue but I’m hopeful that the conversation will be a mostly positive one.

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Holding on to the handlebars like a pro!

A great day!

I just got this note from Lily’s teacher. After yesterday (we were at the hospital for a scheduled appointment for most of the afternoon – she was a champ throughout), this kid deserved to have a great day!

Lily had a great day! She was hungry at the end of the day, and was drinking more of her smoothie as she walked out of class. She may want a snack when communication camp is over. I gave her a blueberry cereal bar, which she loved (recorded it in her food diary). She squealed with delight when we brought it out. At recess, she was walking up to kids from other classes and giving big smiles. It was awesome! She was using her hands a lot today. With an elbow tap, she waved several times (at Ally and then again at the student in the attached picture, Jamie). She also gave a high five. She kept her hands in the shaving cream without support for I think 27 seconds! She also was playing with a switch operated toy in which you push a button to make a toy dog walk/bark. She was laughing and working hard. Great job sorting during math and working on letter ID activities as well.

I’m so proud of this kid!

A hell of a disorder

What a difference a day makes. Yesterday she could barely stand. Today she walked to school all smiles.

She was super wobbly when she woke (unfortunately this is quite common most days) and she only had a few tiny sips of smoothie this morning. But once I started talking to her about her day (school with friends, and then summer camp), she perked up.

I’m grateful for these mornings when she can walk to school. And it’s in these moments that I remind myself how lucky we are.

We have a few big doctors appointments coming up. Next week we are checking in with the nephrologist about the pee situation (which is still a pretty big issue). And then in August we are seeing the GI doctor. This appointment is the one I’m dreading the most. You see, Lily has lost 3.5 pounds since February. This is a lot of weight loss for her tiny frame. We will be discussing whether she needs a feeding tube. Her eating has not returned to the levels needed and it is concerning (to say the least).

I will keep you posted.  In the meantime, we will continue to make the most out of this summer.  This may just be my kids favorite season. And damned if we’re going to let Rett Syndrome get in the way of our fun.

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Someone’s having a fun summer

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Finally!  Her kindergarten headshots.  Lily chose her overalls instead of her sparkly dress.

The days are slipping by. I keep meaning to post but by the time I get to even thinking about it, I’m too tired. This kid has been keeping me busy!  Lily’s been enjoying summer school, summer camp (an after school program for kids who use communication devices), weekends in the country and outdoor dining. Here are some fun photos from the past few weeks.

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Backstage at Mary Poppins at the Paper Mill Playhouse with the Salerno-Abrahams!  Dream come true for Lily Poppins.

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Boston Corners weekend fun!

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Performing at her school’s moving up ceremony with her classmates and getting her certificate of achievement