Happy Fall/Autumn!! Its hard to believe this year is almost over and the holidays are approaching. We are enjoying the change in season and hope you all are doing well. Today we had a visit with the doctor that is overseeing the clinical trial for cannabis. These visits are easy and quick since we talk to him every Wednesday via the phone. We have had several people ask how things are going, etc. I apologize for not updating sooner. Life has been busy with Lauren playing volleyball, Christmas play practices, and various other activities. The cannabis has been successful in some aspects and in other areas it hasn’t lived up to our hopes. Kate’s daily seizures seem to be about the same. She has on average 5-8 seizures a day. Some days she will have less, some days she will have more. On the bright side, she hasn’t had the seizures that cause us to go to the emergency room or any grand-mal seizures. We are very thankful we have stayed out of the ER and she hasn’t had any grand-mal seizures!!! We are able to increase the cannabis two more times and if those increases don’t improve her daily seizures we are out of options with the cannabis. We are praying the increase will be effective! Please join us in praying for this. Regardless of whether or not her daily seizures change, we will keep her on cannabis because it is helping with the other types of seizures.
Since starting cannabis Kate’s myoclonic jerks have increased and disturb her sleep. Whether or not this is a result of the cannabis, we don’t know. Its likely NOT a side effect because cannabis should decrease her jerks. WE upped one med in the hopes of helping but it has not been effective. At today’s appointment the doctor suggested we increase one of the other meds, so we are starting that tonight. Please also pray for this.
Another benefit we have noticed since Kate started cannabis is she is more alert. She is more engaged in her environment and the things going on around her. She tries to talk and participate. We love this!! We also have been able to reduce the amount of MiraLAX she takes on a daily basis. (I will just leave it at that ).
Overall, the trial seems to be going well. Most of the kids are having good results. A few had to drop out because cannabis was causing other issues and those issues were worse than the seizures. The other batten child that is in the trial is doing well on the med. We are thankful that the results for most are favorable.
In October Kate was hospitalized with pneumonia. Kate struggles a lot with congestion. Her congestion sits in her throat and is hard to reach with the suction machine. If she is tired she doesn’t have the energy to cough and clear her throat. Most days this isn’t a big deal. We position her and do various things to help her out. However, one night none of our efforts were effective. She went to bed fine and by 4 am she struggling to breath, had a fever and her heart rate was very high. The moment the doctor saw her, he said she would be admitted. We had the choice to be admitted into our local hospital (St Ritas/SRMC) or go to Nationwide in Columbus. We elected to stay local. Kate received great care at SRMC. The staff was amazing and made our stay pleasant. It was loney and boring but Kate did well with all the treatments and meds she was given.
We recently decreased Kate’s outpatient therapy. She was doing OT, PT and Speech. However, the speech and OT therapist do not believe the therapies are as beneficial for Kate as they once were. After much consideration we agreed to decrease each of them. She now sees them every-other week. It was a hard pill to swallow. No parent wants to hear that their child has lost too much and the therapies are no longer effective. Its one more defeat. Rather than focusing on the negative, we are trying to do things at home to keep her engaged and active. My mom, who was a special ed teacher, put together didn’t “shoe box” activities. Each box has different activities and the activities engage different senses, textures, etc. She seems to enjoy doing these things.
Other than those two things, life has been pretty typically. Kate is enjoying school and the busyness that comes with that, such as after school activities, equestrian therapy, sleep overs, etc. Unless something major happens, I probably wont update again until after Thanksgiving. So we would like to wish everyone a Happy Thanksgiving. We pray it is filled with family, great food and love. We have so much to be thankful for and will take a moment to pause and reflect on those blessings.
Please keep Elijah (Elijah’s journey), Seth (Seth’s fight for peach), Becca, Asher (Asher Bash), and Ashlynn (Ashlynn Noel – A Batten Journey) in your prayer. They are fighting hard! As well as Westley’s cousin, Jarrod. He is a young man and is having heart surgery this week. Also, please pray for those families that will be “celebrating” Thanksgiving and Christmas for the first time without their precious child.