Support Registry Update

CLIMB DMI Intensive — Week 2 💪🏼

Eiley's Continued SMA Journey photo
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Eiley's Continued SMA Journey
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Wow, this girl is really pushing hard. 🥹

Erin is really fine-tuning and focusing in on Eiley’s areas of weakness, and it’s showing because the exercises are getting HARD. Eiley was definitely showing more frustration today because things are getting harder for her, and I’m sure she’s feeling more fatigued too. 😮‍💨

Here are some of the things they’ve been focusing on:

🍑 Glutes & hips: Erin has really been targeting Eiley’s glutes and hips. One thing she noticed is that when something becomes too difficult, Eiley will sometimes just collapse or “turn off” her body. Erin has been working hard to correct that and teach Eiley to keep engaging her muscles, even when something gets difficult. Eiley is definitely NOT a fan. 😂 But honestly, that’s how I know Erin has pinpointed something important to work on.

🦶🏼 Foot positioning & pronation: We also found a different positioning for Eiley’s E-stim that is helping us pinpoint and target the pronation in her feet even more. It’s amazing how making even a small adjustment can allow us to focus more specifically on an area that needs strengthening and correction.

💪🏼 Upper-body strength: With Mary, her OT, they’ve been working on chest presses and isolating Eiley’s shoulders so she doesn’t compensate by pulling from other areas of her body.

👖Functional skills: They’re practicing sit-to-stand while also working on pulling her “pants” up and down using a resistance band that mimics the resistance of clothing. These are everyday skills that we want to help Eiley become more independent with.

🤏🏼 Fine motor skills: They’re also working on her pincer grasp and grip strength through activities like pinching clothespins and other exercises that challenge those little hands.

Between Erin and Mary, they are targeting SO much, and Eiley is being challenged in ways that are hard for her right now. But I can see how much she is fighting through it, even on the days when she is frustrated and exhausted. 🥹🤍

It’s hard to watch your child struggle. It’s even harder when you know they’re giving absolutely everything they have. 

She may not be able to do these things easily yet, but she keeps showing up, keeps fighting, and keeps trying. 🥹💪🏽

So incredibly proud of my brave girl. She is one tough little fighter. 🤍

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Comments

Carrie Pitzl 6 days ago

This is wonderful Lauren. Love reading the updates and hear how Eiley is doing. Praying strength and peace on you all. Proud of Eiley and proud of you too! ❤️