Trials of Grace

Life with Batten's Disease
Update on Charlotte (2/6/26)

Update on Charlotte (2/6/26)

Charlotte is now home and doing better, but she will continue taking antibiotics for her pneumonia for a few more days. We’re trying to keep her comfortable giving her pain killer as needed while praying for God to fully heal her pancreatitis and pneumonia. For months...

Update on Charlotte (2/3/2026)

Update on Charlotte (2/3/2026)

The doctors are giving Charlotte medication for her pancreatitis, pneumonia, and pain. We think she is even feeling throat pain after she threw up so frequently; we found blood in her vomit once, and she winces when she coughs. The doctors are treating Charlotte's...

Update on Charlotte (2/2/2026)

Update on Charlotte (2/2/2026)

Please keep sweet Charlotte in your prayers. Last night she was admitted to the hospital after vomiting for over 36 hours and showing signs of dehydration, discomfort, and pain. The doctors have diagnosed her with pneumonia and pancreatitis. They are hopeful and think...

Merry Christmas (12/18/25)

Merry Christmas (12/18/25)

We are jumping on very briefly to share an update on Charlotte and Sophie. We know it has been a long time since sharing anything, but please assume no news is good news. We are grateful Charlotte has had fewer hospital visits and her seizures have calmed down...

It Is Not Death to Die

It Is Not Death to Die

The subject of death has been a prominent topic in our house since Charlotte’s and Sophie’s terminal disease was diagnosed. Every day we have with them is a gift because we do not know if we will wake up the next day to find they are no longer with us. We have...

Update on Charlotte (09/16/25)

Update on Charlotte (09/16/25)

Summer has come and gone in a whirlwind, and we apologize for not keeping all of you updated. Here are a few updates since we last posted: We have been in and out of the hospital several times these last couple months for Charlotte. She has continued to experience...

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