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Lizzie Lou Sweets and Treats

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05/07/2026

We have been hitting feeding therapy HARD over here, and Lizzie is doing so well 😭 just look at this happy girl.

Just a few weeks ago she was still predominantly on infant formula and only tolerating purées here and there. NOW she is completely off formula, loving whole milk, and just this morning she ate an entire egg yolk for breakfast (so moving up from purées) and then downed two purée pouches and avocado at lunch. Like, who is this girl!?

Oral coordination has been the tricky part. We are still also working on open cup drinking and we would love to get her comfortable with a straw (she’s drinking mainly through a bottle and then an open cup during meals for practice) but this little girl is so tenacious, there is absolutely no question that she will get there ❤️❤️

05/03/2026

We had an amazing day yesterday at the Abilities Expo! I’m so thankful for events like this—even though Lizzie is still little, it’s great to get a glimpse of all the resources out there. We spoke with vendors who do alternative communication, we trialed a larger special tomato chair, saw some great modifications for her positioning, and even looked at a different stander. While we didn’t find anything for outdoor carrying, home renovations, or a more supportive gait trainer, we still feel this trip was a success and we’ll keep searching for the right solutions!

04/28/2026

Lizzie and I took a trip to CHOP on April 13th for an initial Cerebral Palsy clinic evaluation to see if she qualified for their program. During that visit, I had mentioned that we were still searching for a GI specialist who worked with kids with CP. The doctor let us know they did have one—she’s only there twice a month—and she was coming in the very next day AND they had a clinic opening 🤪

So we drove back to Philly the next day for the full clinic!

The clinic itself was about 4½ hours, and between the two days we met with over 10 specialists across multiple disciplines—physiatrists, physical and occupational therapists, a speech therapist, orthotics through Hanger Clinic, a social worker, and the GI specialist. Lizzie also had bloodwork done while we were there.

It was truly an incredible experience, and we’re so grateful to have access to a clinic like this! We’ll go about twice a year, and how it works is that we take everything we learn and bring it back to her local therapy team to implement in her day-to-day routines.

On the GI side, we talked through ways to better support her growth. One of the interesting parts was that they evaluated her individual fat stores and used a growth chart specific to her Gross Motor Function Classification System level—something I have never had a doctor do before.

We have a few new things to try and several strategies we have already started to implement across all areas of focus for Liz🤍

04/12/2026

We call this “crazy time” now and it’s Lizzie’s favorite thing 🤣 terrifying at first to watch as a mom but seeing how much she loves it and how much more VOCAL she is has just been amazing to see.

02/21/2026

This little love bug has had a rollercoaster of a week. Last weekend she was crushing purées, but with the increased “solid” foods, the “maintenance” amount of magnesium we give her to keep bowels moving wasn’t t enough and she quickly became constipated.

Lizzie is a foodie and loves to eat so constipation can happen quickly if we don’t stay on top of it. This is especially true when she takes in more solids (since she has been mainly bottle fed)

When this happens, she usually throws up because her GI is backed up/moving slowly due to her low tone. We had to cancel her swallow study this past week due to this, unfortunately.

We are trying to make sure she stays hydrated enough now that we have things moving. Tummy aches with the added supplements and enemas to get things consistent again is what we are currently working through.

The positive is she is loving purées and solids and is motivated to keep eating! We will be adding back more solids once she is stable again and continue to monitor bowel movements now that we know this small increase can cause this level of constipation on her current protocol.

02/16/2026

Lizzie started neuromuscular electrical stimulation (e-stim) last Friday and she did AMAZING. We are hoping to do this 3X a week and move up to 4x if she keeps responding well, including at home sessions.

This therapy helps activate and strengthen specific muscles, and even in her very first session she sat up straighter and held her head in midline! It was such an incredible thing to see! (Eevee was excited to offer support lol)

02/15/2026

Specialist Appointment 2/5 ✔️

This week we were back at Children’s Hospital of Philadelphia (CHOP) for Lizzie’s GI appointment.

The plan right now is to test the motility of her GI tract — basically how well food moves through her digestive system. Peristalsis is the wave-like muscle movement that pushes food along, and because of Lizzie’s tone, that movement may not be working as efficiently as it should. We’ll also be discussing medications that could potentially help support that process.

The hard part? Radiation exposure.

We already have:
• A swallow study on Tuesday
• Adenoid X-rays recommended by ENT
• And now this motility test, where she swallows tiny markers and 5 days later gets an abdominal X-ray to see how far they’ve traveled

So we’re carefully weighing what’s priority and what makes the most sense right now.

Outside of the medical pieces, the trip itself went smoothly. And in the middle of it all, there were some really sweet wins.

Lizzie has been working so hard in feeding therapy. When she saw us eating chips, she decided she wanted to munch on something too 🥹 Watching her desire to participate felt huge.

And by the end of the trip, she was so tired that she fell asleep as I placed her in the stroller — something that would have been completely unheard of just a month ago.

Progress doesn’t always look how we expect, but we’re grateful for every small step forward. 💛

02/08/2026

Basically the past 4 days 😩 We had ENT Thursday while this one wasn’t feeling the best and that lasted through the weekend. She finally had 4 huge BM’s last night and felt wayyyy better today. Just some sniffles lingering but other than that, out of the rough parts 🙏🏼 sick, upping Gabapentin dose for nighttime (the try and help with sleep) and still experimenting with feeding really was a rough one. We have 5 specialist appointments five weeks in a row. First was ENT last week in Princeton. This week we are at CHOP in Philly for ANOTHER GI doctor. Praying we have some luck with this one ❤️

02/05/2026

The day after Thanksgiving, Lizzie started a new medication called gabapentin. You might know it for neurological pain, but it has in some cases shown to help dystonia. It was a five week ramp up to her full dose, which then also took some time to really take affect. We started seeing a few positive changes with her overall coordination so we were hopeful!

We then however, started introducing a new formal after seeing an allergy marker in some stool tests. Well, after we fully transitioned to the new formula, Lizzie had some of the worst constipation and vomiting since the start of her GI issues. It set us back, and we went back to her old formula.

It’s been about two weeks now and she is feeling much better and we are starting to see the gabapentin working again! We are so excited that it has helped bring her tone down a bit and give her a better “baseline”. Her eyes work better, she’s grabbing things and able to let go, and she’s making progress with feeding therapy. We love being able to see a bit more of her personality shine through ❤️

12/04/2025

(Lizzie is such a daddy’s girl haha) - But wanted to share that this week was the start of Lizzie’s second intensive at . It is three weeks long this time! So she is going every day for two hours for 3 weeks straight (excluding weekends because we all need all the rest!) She is loving the vibration plate and starting to show some smiles on it while also relaxing her hands. Progress!!

05/12/2025

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this......

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

“Welcome To Holland” By Emily Perl Kingsley

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Warren County, NJ
07825

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