How Lizzie is doing and updates - July 2026
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Lizzie Leist
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Lizzie Leist
Hello! We first wanted to say thank you for all of the incredible support from everyone <3
We were unable to attend our out of state intensive therapy program last year, but we were able to complete TWO intensive therapies here in NJ with Springboard Pediatric Therapy (where she already gets her continual therapies multiple times a week, so having the same therapists that she sees everyday be able to do this was such a blessing) This was also a great peek into seeing how she handles the intensity of these kinds of programs!
We thank you for your prayers and your financial support that helped get us through these programs!
We are on our way to finding our core team of providers/doctors who are able to best support Lizzie, and making a few strides in understanding how we can best support her.
A few things that we are working on accomplishing throughout the rest of the 2026 year:
We were unable to attend our out of state intensive therapy program last year, but we were able to complete TWO intensive therapies here in NJ with Springboard Pediatric Therapy (where she already gets her continual therapies multiple times a week, so having the same therapists that she sees everyday be able to do this was such a blessing) This was also a great peek into seeing how she handles the intensity of these kinds of programs!
We thank you for your prayers and your financial support that helped get us through these programs!
We are on our way to finding our core team of providers/doctors who are able to best support Lizzie, and making a few strides in understanding how we can best support her.
A few things that we are working on accomplishing throughout the rest of the 2026 year:
- Lizzie will be getting a G-Tube at CHOP in a few weeks. Lizzie gets most of her nutrition via bottle right now, which in turn makes her swallow a ton of air and takes a toll on her oral endurance. That then takes away from he being able to work on feeding therapy with puree's/"solids". A G-tube will help alleviate that oral fatigue so we can really focus on eating orally for fun and associating it with positive experiences!
- We really want to be able to get down to All Kids are Perfect in NC for the intensive PT program that we already have a deposit down for (they were gracious enough to extend it to the 2026 calendar year) - This is a completely out of pocket expense so we are trying to have funds together to do this by October of this year
- We are meeting virtually with a doctor in Mexico to talk more about Muse stem cells and how they can possibly help Lizzie and her healing. Will be sharing more of this after we speak with the team there!
Again, we thank you so incredibly much for your support and prayers. Please let me know if you have any questions <3
Comments
Phyllis Smith 2 months ago