Sigh... Just when you think life can't get any more hectic than it already is....bam! Some ups, lots of downs and some really special moments. I will share an uplifting story that warmed my heart the other night. Here's the picture:
I was in the kitchen preparing the girls' meds before bed. Lauren was watching TV in her pink bean bag and said, "Mom, look." I turned to look at her and found her pointing to Lindsey who was having a seizure in the red chair. I ran over and took care of Lindsey and laid her on the floor. After watching every move I made, Lauren then said to me, "Where is the Strawberry Shortcake blanket?" I pointed it out to her and the next thing I know, the above picture happened. She placed the blanket on her sister and made sure she was covered up perfectly as she rested. My friends, that right there is a picture of love shared by two special little girls. Some days they get on each other's nerves but, they are inseparable and always looking out for the other. Well...except for the night before when Lauren was giving Lindsey a "piggyback" ride which came to an abrupt stop when Lindsey fell and chipped her tooth... Never a dull moment here.
We had our appointment with our new Neurologist with the University of Iowa back in October. We really like her and are excited to have her as part of our medical team. She was very thorough with the girls and very intrigued with them being identical twins with Dravet Syndrome. If all goes according to plan...hopefully by early spring our girls will be enrolled in a clinical study for Epidiolex. Epidiolex is a pharmaceutical drug made with pure CBD (cannabidiol) and is the last medication option we have for the girls that can hopefully offer us hope in treating their seizures. With our legislature passing the unusable cannabidiol law last year, this is pretty much the only way that we will legally be able to get our hands on this medicine. We are thrilled to hopefully be a part of a very controlled double-blind placebo study. Each girl will have a 50/50 chance of receiving the real medicine or a placebo. We will not know and neither will our doctor know which medication the girls will have. We will have to keep a strict seizure diary and adhere to all of the rules of the study. It will be quite an undertaking for us but, if it can help our girls...we are all for it. We have our next appointment with Dr. Joshi on January 30th and hopefully after that appointment we will know more and have a timeline of when we will start the study.
The girls have been doing ok. We doubled their newest medication over the last couple of weeks. We are also tapering one medication we think isn't working. When you have four different medications being used, it is hard to tell which one is helping. Our goal is to try to get them on the minimum amount of medications without causing more seizures. Quite an undertaking and pretty much a crap shoot. If we can lessen the amount of drugs in their system and lessen the side-effects they cause, it is a win/win. We would appreciate your prayers for our girls' continued safety and for wisdom for treating their seizures. We are very hopeful that Epidiolex can bring our girls relief from their seizures so they can have a greater quality of life.
A lot has happened with my mom since we last spoke. It has been a roller coaster ride to say the least. She spent nearly three weeks in the nursing home in Greenfield. Unfortunately, it wasn't a very good fit for mom and she was very unhappy. She did receive good care from the nurses, aides and therapists for which we are thankful but, the environment and the room in which she was placed in made mom miserable (emotionally and physically.) It was very hard on all of us to see her so upset and to watch her struggle every single day. Luckily, the nursing home in Fontanelle, which we had hoped to get her in originally, had a room open up and we were able to move mom to that facility. Her first couple of weeks have gone well and we hope and pray she will be comfortable and happy there. We are all still coming to terms with her diagnosis. I would ask for your prayers for our family, especially Mom and Dad. Our family is no stranger to adversities but, this is by far the hardest trial we have ever faced. I could go on and on....but I just can't right now.
We were blessed to be able to have Mom come to our house for Thanksgiving and we look forward to having her back at Christmas. Friends, I know I have said this to you many times before but, if you haven't taken it to heart, please do so now. Never, ever take one moment for granted.
Do you have family or friends that you don't see often? Visit them.
Do you take time out of your hectic day to call them? Send them a text to check on them? Maybe just to tell them you love them? If you don't, you should.
Do you have a friend or loved one that you know is hurting? Let them know you care and lend them a shoulder to cry on and an ear to listen.
Do you have any regrets or said things you wished you hadn't? It's not too late to apologize or make a wrong, right. Don't let your pride get in the way.
I have been guilty of all of the above as I am sure everyone else has too. We are only guaranteed right now so live life with no regrets.
The Christmas season is now upon us. Just another reminder that it's not all about the presents under the tree. It's about our presence in each other's lives.
~Merry Christmas~
My wise and wonderful friends. Hugs.
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