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
Apr 28-May 04

This Week

Mara hasn't added requests yet
Leave a Well Wish to encourage them to add to their planner or ask how you can help.

Latest Site Updates

Journal

2 weeks ago I noticed that Mara had pink pee after the day at the county fair. Did she get dehydrated? I of course was worried that kidney function was getting worse or maybe Mara had a kidney stone. Then I remembered that Mara had eaten 3 beets in the previous 2 days. Yup. She was peeing pink from eating beets. Dwight Schrute would be very proud of Mara's love for beets. If you don't know who Dwight Schrute is... Watch an episode or 2 of The Office and enjoy a few laughs. I am glad we can laugh about Mara's kidney stuff when we are not in crisis!

Mara did meet with her kidney doctor this last week and is growing and thriving which is great and a good sign that her kidneys are still doing their job. Labs and blood pressure are stable with no sign of big changes in kidney functioning. The kidney doctor gave us the green light to not come back again for 6 months!! Next set of labs and blood pressure check is now set for January 2024!

Mara also got the green light from the NICU follow-up program 2 weeks ago to graduate from their services after completing testing to screen for learning disabilities. No additional referrals were made as her little brain is doing everything it is supposed to do. Big exhale as this was testing I had been waiting for since Mara was born.

Mara has just started pediatric pelvic floor physical therapy to get help with potty training as we don't know how to potty train someone who has zero urges to go potty. Mara is excited to have a doctor who will teach her how to pee and poop as she really wants big girl underwear.

Mara also has her yearly lipid check and cardiology appointment in September. So stay tuned for hopefully another boring update. Those are our favorite to share!

In the meantime, we look forward to less medical stuff for the moment and can focus on other things like collecting pop tabs for the Ronald McDonald house and serving a meal at the Ronald McDonald house to pay forward the goodness we received from them when she was born. Mara is focused on other good things like ballet class this summer, learning to paddle a canoe, camping and starting preschool this fall. And maybe eating fewer beets.....

Read the latest Journal Entry

7 Hearts • 11 Comments

SVG_Icons_Back_To_Top
Top