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!

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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!

Seven Lessons I’ve Learned From Rett Syndrome

I know what you’re thinking… you’ve not heard from me in ages and then within 24 hours, I post three things.

Well they say that all (good or bad? I can’t remember the saying) things come in three so this will likely be my last one for a while. And it’s really just a repost of what another wise momma wrote. It resonated with me so much that I wanted to share it here.

Thank you momma-warrior Joanne for sharing your insights,  specifically the ones on bizarre symptoms and respite.  She has nailed it with her commentary on what Rett Syndrome has taught her.  Like I said in my earlier post, it’s a hell of a disorder.

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At school earlier today playing with bubbles!

 

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