Romi Praise’s Trip to CHOP

If you’ve found your way on this page, it means you are invested in our family and the progress of our precious girl, Romi. First, I want to acknowledge your presence here and say thank you.

Romi’s journey has been complex, the road has often felt like an uphill battle but time and time again we find ourselves in awe of the goodness of God and the power of prayer. She is here, with us, and every day her smile reminds us of the miracle that is being present in this life.

Unfortunately, doctors have reached a bit of a dead end here in Charlotte with Romi’s care, and our family has decided to (in absolute faith) take Romi to Children’s Hospital of Philadelphia (CHOP)— one of the best GI centers in the world.

We are hopeful for answers, and excited for the possibilities ahead, but taking this step means many uncertainties for our family. One, Romi will now be out of network for insurance and we will have to pay out of pocket for her care. We will be in Philly for the foreseeable future and it means having to pay for accommodation, meals, travel expenses, on top of all of the hospital visits.

Oftentimes people ask what they can do for our family, and honestly I haven’t always known what to ask for besides prayer because up until this point, our finances have been covered. Now though, we are reaching out for both covering in prayer & covering financially.

Any dollar amount contributes to our family being one step closer to finding answers for Romi.

Romi’s second opinion visit starts August 22nd and we are driving up to Philadelphia on the 20th.

Below is a brief summary of where Romi has been on her medical journey and where she is now:

Romi Praise was born on May 8, 2022 at 39 weeks old with a bowel blockage that almost exclusively points towards cystic fibrosis. After extensive genetic testing and doing the gold standard sweat testing twice, we have successfully ruled out CF. Since birth, Romi has had a complex GI system. To this day, she hasn’t been able to tolerate enough food into her stomach to sustain her growth and development so she has relied on IV nutrition, TPN and lipids, through a central line. In the NICU, Romi had 3 major surgeries to remove bowel blockages in hopes that we would find answers. We didn’t. So her third surgery landed her with an ileostomy (where your small intestine is pulled out of your side and your stool in a bag) in order to decompress her and give her gut time to heal. Romi also got a g tube at this time, a port to directly feed her stomach through a tube. After we came home we were hopeful that working with a new team we would be able to continue to try to wean TPN and use her stomach more. We were successful some of the time, almost got up to full enteral feeding at one point, but we also endured 5 hospital stays between the NICU and her fourth surgery. We found out Romi had a high grade partial obstruction causing her not to tolerate feeds so Romi’s 4th major surgery was on April 4th where she had her ileostomy take down (small intestine put back together with colon) and many other surgical techniques to try and optimize its function. Only because of a miracle does Romi still have 90% of her intestines left. We spent 28 days in the hospital waiting for poop and for her motility to speed up. We finally got to come home feeding some through g tube and still on IV nutrition. Since, we have been in the hospital 5 more times. This is a total of 10 admissions since leaving the NICU on September 6th.

During all of Romi’s stays in the hospital she has gone through multiple studies, procedures and other invasive testing. We still don’t have a diagnosis, some say severe dysmotility (which is the least studied GI disorder at this time) and if you ask most of her doctors they throw their hands up not understanding her complexity. We have been focused since birth on dysfunction in the small intestine, but now most are convinced it’s the colon we should be focusing on. This journey is heart breaking, vulnerable and so scary but Josh and I have held on to all of the hope we can. We know Jesus has promised us her healing and we won’t stop fighting and advocating for it until we have it. Romi teaches us so much about joy because she has maintained it since birth and it shines through every moment of her life.