UPDATE ON HEATHER
February 7, 2014
February 7, 2014 UPDATE on Heather: It has been 7 months since our last update which is very hard to believe! Heather has continued to have several rocky days the past 7 months, and March will be a year ago that she had her hip replaced. As I type today, Heather has had her best week ever since the surgery! Every month we have been making medication changes to try and give her the best quality of life without seizures. The last medicine change was made about 2 weeks ago. Prior to this change, she was having some very rough days where seizures were coming in spurts and locking-in where they were only a few minutes apart. She has now gone 5 days without any outward seizures! Praise the Lord! I don’t remember the last time where she has had that many seizure free days in a row, but it has been months and months. She still has activity in the brain which is affecting her right hand and causing it to contract and tremble almost constantly, BUT NO OUTWARD SEIZURES!!! We have decreased and decreased and decreased medicine the past few months because of seizures and toxicity. Normally, when seizures are present, it is a result of the medication being too low, but this hasn’t been the case this time around. Heather’s medicine has continued to be too high resulting in lots and lots of seizures!
So, you ask what has been going on the past 7 months? Well, in the month of August, Heather had another fall from a seizure where every safety precaution possible was being taken. She was sitting and had a safety belt on when the seizure hit her, but the belt gave way and she fell and broke her collar bone. So, to summarize, we have been busy with our usual regimen of doctor visits, therapy 2 – 3 days a week, labs, seizures, all of the things that have become the normal for our family over the years. Someone said recently, “Can’t they stop the seizures?” Others say, “What are the doctors saying?” It’s hard for people to fully understand at times, but Heather’s brain is diseased. It is greatly scarred from the disease and the seizures occur because of the electrical firing taking place in her brain where portions of her left frontal and temporal lobes are missing from surgery in 1996. The doctor’s don’t know what to say, so they usually say nothing except, “let’s try this medicine, or we will see you in a few weeks unless there are problems.”
We are constantly seeking for the best quality of life possible for our daughter. It was only a few years ago that Heather was able to walk freely and would ride some of the rides at amusement parks, while thoroughly enjoying every moment of doing so. However, life for her the past 4 years has been confined to a wheelchair. Just getting her to stand for the family Christmas picture this year was almost unattainable, but we managed at least one decent picture where she wasn’t grimacing from discomfort and pain.
Recently, a new device for seizure control has just been approved by the FDA. We are trying now to get the insurance approval for a consultation with a neurosurgeon in Nashville, TN to see if Heather is a possible candidate, this would involve surgery. More information will follow once we know if this is what the Lord has planned for Heather, next. We ask that you please help us pray for the Lord’s leading as well as wisdom!
Psalm 62: 8 “Trust in him at all times; ye people, pour out
your heart before him: God is a refuge for us. Selah.”