Hard Stuff and an Urgent Need

It’s been awhile since we’ve updated here, and we left things hanging with Lilyan’s second broken leg and Kathryn’s seizures. Things are stable, but not great with Lilyan now, but things are very unstable and really bad for our Kathryn.

Lilyan’s break was a bad one, right through the femur, and she has been in a cast for several weeks. Her X-ray shed a little more light on things, showing many older, smaller fractures that we were never aware of, and also significant osteoporosis. We have an appointment scheduled with a doctor at Cincinnati Children’s who specializes in osteoporosis in children with limited mobility. We hope to start learning more about the causes for this and possible treatment options. Unfortunately, they couldn’t get her in until the end of July, so we will have to wait awhile on that.

Lilyan being casted

Sadly, things have deteriorated for Kathryn, and she is the main one I’m writing about today. We need your help.

Kathryn at her most recent neurology appointment

Her EEG was very troubling and showed that, during that twenty-minute test, she experienced five obvious seizures and many smaller, focal seizures. This confirmed for us something that we were beginning to fear — that Kathryn is seizing pretty much all the time.

Speech is a tremendous challenge for her all the time, and most of the time she also struggles with coordination and eye control. Trying to get on top of this has already been kind of a long journey, and she is currently on four different medications and still experiencing seizure activity through most of each day.

This very short video shows one manifestation of her seizures. Notice the rhythmic motion in her left shoulder and arm, and her empty eyes (please ignore her messy hair). This is pretty constant unless she is so heavily medicated that she can’t function, and sometimes even then this continues. This is already very concerning, and it can become a much bigger seizure with no warning.

It’s breaking our hearts to see our girl so affected. We worry about what kind of long-term damage is being inflicted on her little brain, and we miss her conversations and her delightfully animated spirit in our daily lives.

Bedtime is the scariest time for us because, even though we have a camera in her room so we can hear and see her all night, we do have to sleep. She could have a life-threatening seizure without us ever knowing it. We are currently following the story of another adoptive family who found their son unconscious in his bed just a few days ago as a result of seizing during the night. They will spend this weekend now making end of life decisions about their precious son. This is a very real danger.

A specially trained dog could sense a life threatening seizure during the night and wake us up so we could administer emergency medications and get Kathryn the urgent care she would need. We have now come to the conclusion that it’s necessary for Kathryn to be paired with one of these dogs. It would also be trained in specific ways to comfort and care for Kathryn throughout the seizure, as well as assisting with mobility and retrieval needs.

We have spent the past couple of weeks going through the steps to be approved through 4 Paws for Ability for a seizure dog for Kathryn. Last week, we were officially accepted into the program, and now we have to raise the funds. It’s expensive to raise and train these very specialized dogs, so we have set up a page to help raise those funds. You can learn more about Kathryn and this project by going to Kathryn’s page at Mighty Cause.

We have been told that, even after we complete our fund-raising, it will be another two years before Kathryn’s dog will be ready for her. But just this past week, we learned that there are a few cases when it can unexpectedly happen much faster. Unfortunately, we can’t even be on a list for an opportunity like that until we have finished raising the funds, so we are very anxious to complete this step. 

We would be so grateful if you would help us share Kathryn’s Mighty Cause page as we try to raise these funds as quickly as possible. Also, if you are interested in donating, you can so do at that link above.

Lastly, I can’t even tell you how much we would cherish your prayers, not only for our efforts to raise these funds, but also for Kathryn’s safety, and for guidance as we try to get these seizures under control.

Thank you so much for always praying for and loving our family. We continue to be so awed by the depth of love showered over our family so regularly.

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