Emmaria is 9.5 Months & Thriving — Our July Update 💕
Hi friend,
I wanted to take a moment to sit down and write to you like I would a close friend — because that's exactly what this community feels like to me.
Emmaria is 9.5 months old and she is finally gaining weight! As of last week she was 13 lbs 2 oz, and if you know our journey, you know how big of a deal that is. 🎉
For those who are newer here — Emmaria was born with a rare genetic condition called Tuba1a. It has brought a lot of challenges: neurological issues, developmental delays, and she is Gtube dependent. But this girl shows up every single day.
This past month was one of the hardest yet. Since March, Emmaria had been having pain around her Gtube and we kept going back to doctors trying to find answers. Finally, in mid-June, we found out she had MRSA again — her 3rd time. On Father's Day, she began aspirating and we had to call 911. She was put on oxygen and taken to Children's Hospital. When we arrived the next day, we were met with resistance — but mom and dad pushed back and got her admitted. The doctors were glad we did. They didn't feel she was safe to go home until they figured out what was going on.
After a 4 day stay, Emmaria came home. 💕
Here's the good news: Instead of feeding her every 3 hours, I now feed her over 24 hours straight — and she is doing SO well. Vomiting is way down. She's tolerating baby puree in addition to her formula. The difference has been huge and will make things so much safer for her going forward.
She has a follow-up with her ENT on 7/26 and the team has a plan. We are all hopeful she may outgrow this without surgery. And the biggest win? Emmaria has not had reflux or vomiting since July 14th. 🙌
Emmaria is also working SO hard in therapy! She currently does Physical Therapy, Vision Therapy, and sees a Developmental Specialist. Occupational Therapy starts soon, and at 12 months she can begin Speech Therapy. She can already say Aurora, Hi, and her own little sounds — including making growling noises to scare you 😂 She is getting so good at holding her head up for longer periods. Every milestone is a victory we celebrate loudly.
And her big sister Aurora — 10 years old — is an absolute angel. She helps change Emmaria, feed her, give her medicine, and even learned how to put her Gtube extension on and off. Emmaria couldn't ask for a better sister. 💕
Thank you for being part of our village. Every prayer, every kind word, every donation to Emmaria's Heart — it all carries us forward.
With so much love,
Lindsay & Emmaria 💕