Scott had another day of seizures Tuesday. That’s two in one week, so I we reached out to his Neologist and we are waiting to schedule a 24 hour at home EEG, to monitor and find out what is happening. We don’t want to add more meds as he has 3 seizure Meds already.. He is doing much better today.  I am off for the week. My office is closed due to the doctors out of town, so I hope we would be able to get the eeg done while I am home. 

He had Avastin yesterday and has PT today. There has been discussion about using a wheelchair at home and possibly getting an electric wheelchair. Not that Scott can not walk at all, but due to the amount of falls lately, the therapist is encouraging safety first. 

Insurance would probably cover some of this depending on the chair / scooter. However, we have been talking about purchasing a Journey Zoomer electric chair. These chairs are not approved by the FDA, and there for will not be covered with insurance. But these chairs are light weight, fold down easily and would allow for independent movement for Scott. I have found a few on Marketplace for resale locally and there are other brands that are cheaper than the sooner. That said, it’s something we are considering with the encouragement of both our physical and occupational therapists. Scott of course is struggling with this idea and I understand this, these are difficult choices. The safety issue is part of the reason, the other is time management as walking takes a lot of time and doesn’t always work well with schedules and timelines that need to be met, so he is not rushing and has a falls or accidents. 

We were hoping to get to St Louis next weekend but plans have changed and instead, Jake and Kyle are going to come here and Scott’s cousin from Texas. We are very excited about having them all here! 

We are hoping we will make it to Pennsylvania in June to see my family too. We are still looking at driving or flying and where to stay. With Scott’s left side struggles, stairs and bathrooms are things we need to consider. My family’s homes (who we usually stay with) are not functional for our situation so we are looking to stay in a hotel, giving us few things to consider when planning a vacation and what will be the best for us.

We just wanted to thank all of you who have reached out and stopped by to encourage us and support us. We are so very thankful to have you as friends. You are all awesome!