A Day With Lily

A Day With Lily My name is Lily Jo (Bean). I was born with trisomy 18. So far, my family and I have been in the hospital most of the time. Love is all you need to start.

We’re currently working on changing that. This is my story and how we can help you.

05/29/2026

One of the best things we have found. No buttons just touch. She loves this thing.

New teether to get these stubborn teeth in. This girl had the top 2 break through now we have 4 more coming brings us to...
05/24/2026

New teether to get these stubborn teeth in. This girl had the top 2 break through now we have 4 more coming brings us to 8 all together

Working on side sitting.
05/21/2026

Working on side sitting.

05/16/2026

Go ahead and pay $100 or more on Etsy for this.....not me. For maybe $30 I made my own. Lily's gonna love it

This little lady weighs 18.38 lbs. So proud of her. This time last year we were coming home from the nicu with a 6lb lit...
05/13/2026

This little lady weighs 18.38 lbs. So proud of her. This time last year we were coming home from the nicu with a 6lb little bean.

What is that I see.....tooth number 3? #4 is peeking if you look closely
05/08/2026

What is that I see.....tooth number 3? #4 is peeking if you look closely

State medicaid......lily has been on medicaid since birth, we were on blue cross blue shield then switched to united. Ha...
05/05/2026

State medicaid......lily has been on medicaid since birth, we were on blue cross blue shield then switched to united. Had that from June till December with no issues. January they told us we had to switch to state medicaid in order for us to get state help....makes sence right? State pays for her nursing and pays the home head aid company to pay us. Well they have been denying all of lily's appointments at motts children's, despite all the letter sent to them by each on of her specialists down at parkveiw and her pediatrician. Most recently they denied all her medical supplies to keep her alive...oxygen concentrator, portable oxygen and her ventilator. They have been given numerous reasons as to why motts is better suited to care for lily they have a trisomy clinic, teams that specialize in conditions shes been diagnosed with and they still deny her. Why? Cause it's out of state. Motts is just under a 2 hour drive and lily will tolerate that. Rileys is a joke of a hospital and it's 4 hours away. That drive is putting lilys health at risk but they don't see that. This mama is heated and will be making some not so nice phone calls today.

Pic of our beautiful bean

04/30/2026

I got a little emotional today. The feeling of relief filled my eyes with tears, knowing we are doing everything in our power to keep our daughter safe. We bought a generator, and for many you're thinking why did she cry over that. Well that generator will keep our baby alive and fed when the power goes out. Since she's been home anytime the lights flicker, or I hear thunder my anxiety hits. Now we have peace of mind knowing we won't have to drive through a snow storm or a bad thunderstorm to get her to the hospital just to have power for her machines. She's been home for 4 months and slowly we are building a new norm for the family. It was so scary at first but we take one day at a time and do our best.

04/30/2026

Got lily this cool high chair that's also a swing.

Address

Angola, IN
46703

Website

https://ronaldmcdonaldhouse.org/, https://www.extratolove.org/travelgrant

Alerts

Be the first to know and let us send you an email when A Day With Lily posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category