This planner is no longer available. We're actively working on enhancing ways for your friends and family to assist you. In the meantime, feel free to use journals to share your requests for help.

Add Request
Accepted
Export
List
Day
Week
Month
May 12-18

This Week

Nothing Planned This Week
Leave a Well Wish to encourage them to add to their planner or ask how you can help.

Latest Site Updates

Journal

When it rains, it pours? Since my last entry, the whole Rome family ended up getting hit with Covid and there were definitely some dark bleak days in there. One night, for example, Jeff was really very sick, but was up all night holding Elijah, who was also very sick, and would only sleep 20-30 mins at a time… and this after Miriam threw up all over herself, Natanya, and the crib. Oy! Of course, to avoid exposure, they couldn’t really have help come into the house, but with Jeff sick and Natanya’s stroke recovery, it really was too much to handle with 2 sick littles and (still!!) a feeding tube. Our mom, Linda (aka Mimi), was there helping the Romes but then also got covid sick (she’s recovered now and back in PA- thank you, Yorkers, for your support to her!). The new nanny, Celina, ended up also having Covid, but it hadn’t hit her super hard, so she was still able to come and support most days. Thank goodness for Celina! 

The new year had NOT kicked off with the new normal we had hoped for (a consistent nanny, Elijah drinking, Natanya making leaps and bounds with her recovery, and a stable home routine).  Natanya was also supposed to have her big MRA scans last week to investigate the possibility of the Fibromuscular Dysplasia, but they had to cancel those appointments with everyone sick- Natanya needed to help watch the kids. She will complete those scans next week.

There were, as has been a theme in this story, lots of heroic efforts during this time. Sandi brought them her healing soup (twice!). Lisa took Miriam and Elijah for much of the weekend before they were sick, when Jeff was sick. Aunt Janie and Uncle Rob came up from Allentown to drive Natanya to appointments, make meals, and help with the kids. Babysitter Kate G supported extra days before returning to Clark.  There were lots of others who delivered meals and offered resources. The light that shines by those supports (and all of you!) during those dark days is not something the Romes or I take for granted. 

And now it feels like the momentum has shifted in the right direction! The virus has almost worked its way out of the house (still some lingering coughs and stuffy noses). Celina will now be coming regularly to support Natanya during the day with the kids. But the biggest news is that ELIJAH IS DRINKING (hallelujah)!! He’s not drinking enough yet to be out of the woods, but enough that they’re able to supplement with hydrating foods, and avoid putting the feeding tube back in. Celina was a huge force in getting him to drink, and hopefully he continues to get better and better at his new skill.

Natanya‘s recovery involves several appointments each week for PT, OT, etc. She is not able to drive yet, so transportation to and from appointments has been tricky. She still suffers headaches and exhaustion, as well as anxieties around continued stroke risk, especially in the night. However, her endurance and persistence are palpable, and her profound dedication to her kids remains her obvious and clear priority. She really is a warrior! 

Thank you for staying tuned, and for all of your continued love and support. XOXO Elyana


Read the latest Journal Entry

9 Hearts • 10 Comments

SVG_Icons_Back_To_Top
Top