Trials of Grace

Life with Batten's Disease
Update on Charlotte (7/26/25)

Update on Charlotte (7/26/25)

*CHARLOTTE IS NOW HOME! (7/30/25)* Charlotte is still at the hospital recovering slowly; she is finally breathing on her own but still experiencing difficulty in accepting her feeds. She is allowed to go home when she can tolerate full feeds again. The doctors think...

Update on Charlotte (7/23/25)

Update on Charlotte (7/23/25)

Last week Charlotte experienced very high fevers and much discomfort, so we took her back to the hospital. She was diagnosed with a UTI, but even after several days of antibiotics and fever reducers, her high fevers persisted. We also noticed an increase of seizure...

Update on Charlotte (6/30/25)

Update on Charlotte (6/30/25)

Charlotte is home! We are so happy to be back together as a family and we praise God for the positive outcome of this whole situation; God intervened, and we are so grateful to have Charlotte still with us. There will be a learning curve for us as we become more...

Update on Charlotte (6/27/25)

Update on Charlotte (6/27/25)

Charlotte's g-tube surgery went very well on Wednesday, and we were happy to see her wake up quickly from the sedatives. Yesterday they started feeding her through her new g-tube, and her body is currently accepting the volume. She has been receiving small quantities...

Update on Charlotte (6/25/25)

Update on Charlotte (6/25/25)

Charlotte is now fully awake, and we have been seeing so many smiles from her. They inserted an NG tube through her nose to her stomach so she could receive food, water, and medicine and we saw her perk up immensely. Her body is still having difficulty removing...

Update on Charlotte (6/21/25)

Update on Charlotte (6/21/25)

Not much has changed since our last update. Charlotte is still having great difficulty fully waking from her sedative, so her swallow study test is on hold until Monday. The doctors believe it’s been harder to recover from the sedatives because of her brain shrinkage....

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