It has been awhile since I last updated everyone on Kate, which could mean a few things – 1. Kate has been doing well, so there isn’t much to report OR 2. Things have been very busy and I havent had time OR 3. I’ve been lazy. Truth is all are true.
The summer was busy, especially July, and when I had time to sit down and write I was too tired to put into words how Kate was doing. Honestly for the most part, she has been great. I was thinking this morning about Kate’s current status and thanking God for how stable she has been. We are still battling her seizures but other than that she has been good. We havent noticed a progression in the disease or had to deal with new symptoms. She remains alert, most days, and happy. We still see her funny, stubborn personality from time to time and that brings a lot of joy to our lives.
Kate’s seizure control, for a batten kid, is good. She has on average five seizures a day. Each month we deal with her seizures going back-to-back (several seizures w/in a small period of time, which do not stop without medical intervention) for a prolonged period of time. Prior to June we used diastat to treat the seizures with no success. We would then head to the ER where Kate would receive meds through an IV. Finally, after trying a few different rescue meds, we have two on hand that stop her seizures and keep us from visiting the ER. We have come to the resolve that Kate’s daily seizure drugs will not prevent these once-a-month occurrence. Well, we had come to that resolution, until we were invited to participate in a clinical trial at Nationwide Children’s Hospital for Cannabis.
Nationwide was given permission by the FDA to allow 20 patients with hard to control seizures a form of Cannabis. The form of cannabis Kate will be taking contains 98% Cannabidol and less than 2% THC, which means she will not get “high” from the drug. Over the last several months Brock and I have read news reports and studies on cannabis and watched documentaries. We agreed that if Kate was ever offered the opportunity to take it we would do so. People with hard to control seizures seem to respond positively to the drug and have a higher success rate with it than traditional seizure meds. Considering all of the drugs Kate takes and types of drugs she is on, we feel that this route is safer for her body and will have a higher success rate. The study is for two years and is heavily regulated. It will require several visit, phone conversations, etc. but we feel beyond blessed that Kate was selected to be a part of this group. Over time, if she responds well to cannabis, we can decrease or even stop the regular seizure drugs she is on. The doctor also said that the kids who started cannabis last month are showing some improvements with muscle tremors and jerks. We are hopeful Kate will have the same response. Please pray with us that this goes well for Kate. We are praying that she responds positively to cannabis, does not have any serious, negative side effects, and tolerates it well. We are also praying that some of the positive side effects will happen, such as less to no tremors, jerks, etc.
Kate had a birthday last week. Hard to believe she is 8 already. Typically we celebrate her birthday by inviting family and a few friends over, but this year we elected to celebrate differently. Kate’s birthday is two days after our nephew’s birthday. Even though they were 14 years a part in age, they had a special bond, therefore we always celebrated their birthdays together. Over the last few years we also celebrated my sister-in-law’s birthday at the same time. As some of you know, our nephew, Dylan, passed away last December after battling cancer for three weeks. Since this was his first birthday in heaven, we decided to not have our traditional party. We felt it would be too hard to celebrate without Dylan. Brock, Lauren, Kate and I went to the Fort Wayne zoo and spent the together enjoying the animals, the weather and being together. It was a very nice day and something we will always remember. I was worried about how we would handle her birthday since she is now 8 and the average life expectancy for Kate is 8-12 years. Since her 7th birthday I have been anxious about her turning 8 but thankfully the anxiety has gone away. Rather than focusing on how long they say she will live, I am focusing on how well she is doing today and praying for the miracle of healing we so desperately want!
The end of July we attended the Batten conference in Columbus. As always it was a great time. It was nice to see everyone, catch up and make new connections. Since it was in Columbus and the Ohio Chapter was hosting we were busy helping with different aspects of the conference. It was nice being involved and working with the BDSRA, who did most of the work. As soon as the conference was over we were looking forward to the next one. Hurry up July 2015
School is back in session and Kate has done well adjusting to the new year. Kate has always been someone that likes to go, go, go. So summer is VERY boring for her. We cant keep her busy enough or offer her enough chaos. Since school has started, Kate has been in a better mood, smiling more, etc. We worry about the germs and illnesses she is exposed to but she loves going and seems to benefit from the activities and therapies, so we send her. She did come home with a cold after a few weeks, but has recovered from it well.
Recently we had to let one of our nurses go. She was working every weekend and I found her sleeping. After watching the videos of previous shifts, we elected to go our separate ways. I was so angry. She was sleeping during every shift, up to four hours. She was setting an alarm on her phone so she would be awake and alert before we came to relive her in the morning. We really liked the nurse and were so upset that she didn’t treat our daughter’s life with respect. The majority of the time Kate doesn’t need anyone’s attention during the middle of the night, but when she does, it is imperative that someone be there to help her. The night I found the nurse sleeping I had told her that Kate had a bad day and asked her to watch Kate’s oxygen levels and seizure activity. Within one hour of reporting to work, she was a sleep. The more I think about what could’ve happened, the angrier I get. In my opinion, it was a complete disregard for Kate’s welfare.
Within the last 24 hours two sweet batten girls have gained their wings. Sophia and Ali are free from the disease and are running, playing and enjoying being free from batten disease. Since January 30+ children have passed away from batten disease. Please pray for these families.