Month: November 2018

We hope that all of you had a Happy Thanksgiving! We are beyond thankful that the four of us and our two fur babies got to celebrate another holiday together. Connor has been sleeping through most of the day lately but we had an extra special Thanksgiving this year. Jake created “the menu”, helped me make dinner and set the table. We have been having fun spending time together in the kitchen! We loaded our plates up with delicious food and pushed sleeping Connor in his wheelchair up to the table. We timed his afternoon feeding so that it would coincide with dinner and we could all eat together. It was about 4:00 in the afternoon.

Just before we started to say grace, Connor woke up for the first time that day and not only was he alert and in a great mood, he was vocal and wanted to party. 🙂 He got a little taste of his favorite cranberry apple sauce and pumpkin pie. As I was sitting on the couch next to Connor in his wheelchair, he said “Ma”, grabbed my hand with his little hand and pulled me in close to him. Later in the day, he did the same thing with Tom. He said “Da” and pulled his hand close while Tom sat on the floor next to his wheelchair for a long time. Connor loved spending time with big brother Jake too! We will always cherish these special memories together!

For the next two days, Connor was more awake and playful than normal. It’s as if God knew we all needed that. We visited friends and spent a lot of time at home lounging around, eating leftovers, and enjoying endless cuddles. We played games and watched movies and Jake played the piano with Connor.

And then, for some reason, Connor was up all night long and had a really rough night. He is back to sleeping through most of the day, only awake for short periods of time. We are reluctantly trying to adjust to what we feel is the “new normal”. He had his Botox injections a few days ago to help decrease spasticity and slept through the entire thing. He has an upcoming 24 hr home EEG to monitor for any seizure activity. We are in the process of trying to get PT at home because it is getting to be too much for him to go to PT, even though it is only once a week. We feel the weight and fear of what is ahead whether it be weeks, months or years away but at the same time our hearts are filled to the brim with love, faith, hope, and gratitude. Batten Disease can never take those things from us.

Connor has had lots of up and downs lately which we have learned to expect due to his disease. We adapt as quickly as we can to his ever-changing needs. He is the biggest sweetheart, even on his worst days! They increased his spasticity meds and one of his seizure meds which has made him much more lethargic than he was. Pain management continues to be a top priority. Due to the painful spasticity in his legs, we have decided to try Botox injections which I know sounds strange but multiple doctors and therapists said it can really help. The good news is, the injections don’t cause increased fatigue and can be targeted to the problem areas which for Connor is the calves and heal cords. It usually takes a couple weeks to see any improvement from the Botox and he would get the shots about once every four months. His first appointment for Botox is right before Thanksgiving and we are excited to see if it helps him! Overall, he has been sleeping well through the night but every once in a while, he wants to be a 2:00am party animal. 🙂

He has had some seizures and some “episodes” that we and his neurologist cannot identify. They don’t look like any kind of typical seizure but we are going to do another EEG in the near future to rule out seizure activity. If he continues to have seizures, he may have to switch to the keto diet formula and we may have to add to or change his meds. We know some family members and friends are curious as to whether or not CBD oil could be a treatment option for Connor. The short answer is, YES. In fact, Epidiolex has been FDA approved and will be available legally in Idaho with a doctor’s prescription. You can read more about it here: https://idahonews.com/news/local/legal-version-cbd-oil-epidiolex-approved-by-dea-to-be-offered-in-idaho

That being said, he would have to be weaned completely off of one of his seizure meds and reduce the dose on the other in order to use Epidiolex. That in itself could cause him to have more seizures so it would be like a balancing act with the meds. Regardless, we are happy to know that it’s an option that was not available to him before.

We recently switched his food from a chicken formula to an organic plant-based blended food and he is doing much better with it. He has less acid reflux issues and seems more content overall with the new food.

This morning a nurse visited our home to do an assessment to see if Connor would qualify for some Private Care Services. It went better than expected and she said on the low end, we are looking at about 15 hrs. of help per week. This would not be a nurse but more like an assistant to me in helping Connor with daily living tasks such as bathing, diaper changing, stretching, physical therapy exercises, transfers, etc. They would even be allowed to go with us to doctor’s appointments! It takes a while to get these services going but we are looking forward to the help!

Thank you for your continued prayers and positive thoughts!

Love,

The Perran Family