Lizzie Lou Sweets and Treats

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08/12/2026

Me trying to use Lizzie’s feeding pump for the first time. Why I thought this was a good idea to document at the time is beyond me, but I hope y’all are entertained. Gotta keep things fun and silly, right? 🤪

08/11/2026

Lizzie can’t safely sit on a couch, a chair, in a highchair, on a bench - literally any kind of regular seating, so when we find something that can support her and she actually LIKES it - that’s a huge win!

Lizzie is non-ambulatory and is a GMFCS level five which is the most severe classification for classifying gross motor function with CP. Thiss just means she needs more support than most when it comes to any gross motor function, including sitting!

But Liz is an extremely determined girl and we are hopeful that with therapies and continuing interventions, we can help her make a lot progress!

We have been so overwhelmed by everyone's love, prayers, and encouraging words over the last few days!So many of you hav...
07/26/2026

We have been so overwhelmed by everyone's love, prayers, and encouraging words over the last few days!

So many of you have reached out asking how you can support Lizzie and our family; honestly just everyones prayers are the biggest gift 💛

Please pray for Lizzie's upcoming surgery, a quick and smooth recovery, and that this next step brings her more comfort and helps her continue to thrive!

A few of you have also asked if there's anything practical we need, so with Lizzie's birthday also coming up next week, I put together a wishlist that includes adaptive clothing, feeding supplies, equipment, equipment accessories, and a few other things that will help as we transition to life with a G-tube (along with some actual fun birthday stuff she would enjoy!)

There is absolutely no expectation to give, but we wanted to share!

Thank you everyone for all of your loving support! 💛
https://my.babylist.com/lizzie-leist

Lizzie's Support Now Page:
https://www.supportnow.org/lizzie-leist

07/25/2026

One of the biggest misconceptions is that feeding challenges are only about eating.

For Lizzie, it has actually been the combination of reflux, slower digestion, constipation, painful bloating, gas, vomiting, and trying to understand how all of those symptoms affect one another 😩

And trying to figure out what stems from JUST her tone is another piece of the puzzle.

We are just trying to isolate (as best we can) her symptoms to really get a good idea of what is causing what and what the actual sources are.

We are pumped to be able to manage the air swallowing a bit more, to remove that hurdle, and see where our new “baseline” is.

We pray that this is what we experience and we can continue to help Lizzie live a more comfortable life 💛

07/25/2026

After years of navigating reflux, vomiting, bloating, constipation, oral fatigue, and countless feeding challenges following Lizzie's TBI, we have made the decision to move forward with a G-tube.

This wasn't a quick or easy decision. We have spent years trying therapies, medications, feeding strategies, and making all the adjustments along the way.

Our hope is that a G-tube will take the pressure off getting all of her nutrition by mouth, that was we can focus on building her oral skills while helping make feeding more comfortable for her.

I will be sharing more about what led us here and what we are hoping this next step will bring!

If you have a feeding tube experience, I would love to hear your story 💛

06/23/2026

Lizzie is loving the ball pit! She’s loving all the input from all around her. A new favorite toy/tool/experience for sure. This was from today’s session with our favorite Springboard Pediatric Therapy ❤️❤️

Today we went back to Children’s Specialized to finalize our next equipment order and fill out all the paperwork to star...
06/05/2026

Today we went back to Children’s Specialized to finalize our next equipment order and fill out all the paperwork to start the process!

We are putting in for a gait trainer (a walker), a new activity chair 🤞🏼 and a stroller. We had originally decided on the blue stroller shown, but I shared about needing a bit more bottom storage (small thing, but Lizzie usually has a cooler and a bag of supplies we need) and the straps were a bit too high even at the lowest setting. They brought in the Voyage (the polka dotted one) and Lizzie calmed right down in it! She probably spent half the appointment just sitting in it 😂 so we pivoted and put an order in for that model. Also gives us the additional storage and it has a bit more trunk support for her.

If all goes smoothly and insurance approves, we can expect to have everything in 3-4 months. We pray we do not have any hiccups, everything is covered, and Lizzie can get her new equipment.

We cannot recommend Donna with and Brian with enough! They are amazing and we are blessed to have them be a part of Lizzie’s team. ❤️ 1. KidWalk Gait trainer 2. Rifton hi-low activity chair 3. Voyage stroller

Last Wednesday we went to Waterloo with our homeschool community - Lizzie loved the water! Such a blessing we are able ...
06/01/2026

Last Wednesday we went to Waterloo with our homeschool community - Lizzie loved the water! Such a blessing we are able to bring Lizzie to our meetups so she can participate too. We aren’t to stay too long due to current feeding hurdles and comfort, but it’s enough for her to still have an amazing time! Grateful for all the mamas who are always willing to help make Lizzie’s day just as special 🩷

Another waiting room - this time for another swallow study.Last Thursday was Lizzie’s second swallow study and it unfort...
06/01/2026

Another waiting room - this time for another swallow study.

Last Thursday was Lizzie’s second swallow study and it unfortunately didn’t go too smoothly. Lizzie had to fast for it, was hangry, wasn’t able to take her medicines, and everything we had to give her had to have barium mixed in it. I couldn’t hold her. She was upset the whole time.

All that being said, I always make sure to ask tons of questions to any new providers and I at least got small tidbits of new information and just new perspectives so I’ll take that.

They were able to see one swallow 😅 and it all looked normal based on that so we will ride that. We will just continue to monitor any and all signs of aspiration per usual.

05/30/2026

Daily swing time ending with a nap 🩷

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Warren County, NJ
07825

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