Caring for Florence

Many know that Jeremy and Mera’s oldest daughter, Florence, has epilepsy. For the most part, medication has kept seizure activity to a minimum. Unfortunately, in March of this year, her seizures began to break through her medication. All medical care happens in Portland, so there are more significant wait times between appointments. In the meantime, her seizure activity has continued to escalate, including days when Florence experiences 40 plus grand mal seizures. The physical, mental, and emotional toll on her little body are heartbreaking. A year ago, Florence started kindergarten at Madrone Trail and was flourishing. As of today, she is unable to go to school. Florence just celebrated her 7th birthday, but a recent psychological evaluation shows that her cognitive levels have declined to those of a three or four-year-old. She has been subject to test after test, which has determined that she has a malformation in her brain and that the seizure activity is coming from three locations. One of these is operable; the other two are not. The location of the operable one affects Florence’s impulse control, which means that she cannot regulate herself and, as the doctor put it, causes her to be in an “unhinged state.” This plays out with constant activity as well as unregulated behavior, and when coupled with the constant threat of seizures, it creates a need for 24/7 supervision. She is currently on heavy seizure and ADHD meds; however, she still seizes daily (some days are better than others) and seems to become more unhinged the longer this progresses.

Just before all this began, Jeremy and Mera started their self-employment journey. They began building a recording studio with high hopes of being done mid-summer. Neither could have foreseen this medical journey they would have to take with Florence. DIY construction deadlines have been pushed back multiple times and recordings delayed due to the numerous OHSU trips and the pure exhaustion they feel as they care for Florence and the boys. Jeremy and Mera both exist with a sleep deficit, as all the activity in Florence’s body causes her to be up most nights until 1:00 AM. However, the boys, ages 2 and 4, are up by six every morning. They are in the middle of a special need situation as they try to keep their heads above water. None of the above paints a clear picture of the heaviness of the circumstances and watching their daughter, our granddaughter, wither before their eyes. Florence rarely smiles or laughs, no longer likes cuddles (I miss this the most) and is a shell of who she was.

On November 14th, Florence will have the first of two procedures on her brain. In order to determine the exact location and size of the seizure activity, the first procedure will be a stereo EEG where they will drill 8-15 tiny holes in her skull and insert an electrode into each one. This will require at least a week's stay and possibly longer, depending on the readings they get and how she responds. It will be followed by a week of monitored home recovery. The skull holes will take about six weeks to heal. The second surgery will remove the malformation in her brain and must occur within three to four months of that stereo EEG. It will require another week or more up in Portland with a much longer recovery and aftercare period.

Many have asked us how to help them as they go through this. First and foremost, please pray. Below is a list of specific things that can be prayed over in the coming weeks and months. On a practical level, this fundraiser aims to lighten the financial burden, helping Jeremy and Mera be one hundred percent available to care for Florence before and after surgeries, including the many trips to and from Portland, loss of income, and provision for home care/respite. We want to allow them to team up in the daily care, relieve one another, and get much-needed rest. From experience, Florence always needs to be watched, and one person/parent cannot do it alone, especially with two other children to care for.

Things to pray over:

For Florence - Both procedures – no complications, and they would accomplish what they need to with little side effects, specifically with the second surgery and possible long-term effects in areas of her memory and emotions

Wisdom for the whole medical team assigned to her

Protection from harm with the constant seizure activity

For Jeremy and Mera - God would give them the physical, emotional, and mental strength to care for Florence.

Provision to function from a place of rest and not exhaustion.

Caspian and Atticus - Comfort and peace when the rest of the family is up in Portland.

They have never been gone from their parents this long.

Thank you so much for taking the time to read this lengthy description. We know the power of prayer to heal, restore, and bring peace amid our fears and the unknown parts of Florence's story. We appreciate the outpouring of prayer and love for the family from so many of you. We could not get through this without it.