The girls are plugging along. We met with our Neurologist a couple weeks ago. She decided that we need to put them back on the medication that we had stopped a few months back. The girls were in a tailspin and the seizures were way out of control. So, we are now back on four seizure medications. Things have settled down some since we started and we are hoping they will continue to get better as we increase. We talked at length about the CBD clinical trial. We should receive a phone call from her in early March to start the initial phase of qualification for the trial. Just because we fit all of the criteria for the trial does not mean we will be chosen. There are only 130 patients world-wide for this trial and the qualifications are pretty strict. We hope we will be part of the 130 so please join with us in prayer that our girls will be chosen.
If you didn't already see it, we did a news story with the Des Moines Register a couple of weeks ago. Des Moines Register is the link if you would like to read it. We still have a few Republicans who are content with a law that doesn't work. Hopefully they will have a change of heart and see the need for change. There a lot of lawmakers who are working hard for us and we hope that once again their hard work will pay off and we will have access to this medicine. Not just for those of us suffering with epilepsy but, also those with other life-threatening and debilitating diseases who could benefit. I made a trip to the Capitol yesterday and had a frank discussion with Clel Baudler. He is one of the Republicans that are content with the law that doesn't work. It seems the progress he made last year has been completely lost. To say that I am frustrated with him would be an understatement. If you haven't already done so, please reach out to your local legislators and ask for their support for expansion of the current law. Find My Legislator is the link you can use to access your local information. Sick Iowans need access to this medication IN IOWA.
Our beloved Scooby passed away three weeks ago. Although he had been dealing with a health condition for a few years, it was very unexpected. It's quiet here without him. We don't have a warm welcome every time we walk in the door. We don't have a vacuum cleaner to clean up our messes on the floor. We don't have a warm snuggle buddy as we watch TV. I miss the times he would pass by me and nudge me with his nose; just because. He was a good dog and he can never be replaced.
"You just gotta roll with the punches." Those were the words my dear mother spoke as she laid in intensive care after she developed pneumonia and spent 5 days at Methodist Hospital a couple of weeks ago. I am happy to report that she is back "home" to Fontanelle following her stay. Unfortunately, her health continues to decline rapidly. She is now under hospice care at the Good Samaritan Society and our main focus is to keep her pain under control and keep her comfortable until God calls her home. We had many hard conversations over the last couple weeks and have shared some very emotional times. Please pray for Mom's comfort and peace, for strength and peace for Dad as he only leaves her bedside when relieved by one of us kids. For those of us who are blessed to call her Mom, Grandma Rose and friend. She is handling this with such grace and dignity, I am in awe of her every single day. She deserves only the finest mansion heaven has to offer.
Thank you to those who are going above and beyond to help take care of our family while we travel down this path of life. The meals, the cards, the house cleaning, the words of love and encouragement mean the world to us. There is no greater thing than to see the love of Christ being lived out by those He loves. "Not all of us can do great things. But we can do small things with great love." - Mother Teresa
With Love,
Kim
sending love.
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