Next Chapter- 7 years since diagnosis

Hard to believe it but October 7th marked 7 years since Julia was diagnosed with this horrible disease. October is also the 5 year mark for the restart of the trial. While we have experienced a lot of ups & downs in these last 7 years there is still so much to be thankful for. Julia did some on the job training recently @ a local restaurant, she got a $1 tip from a customer during her 2 hour shift & was thrilled. Although she was tired when she came home she loved it. On the other hand I recently was laid off from my  work from home data entry job. It would be very difficult for me to get a job outside the house with Julia's schedule of appointments, not to mention I can't leave her by herself. So we have decide to expand our home based sign business to include custom t-shirts, screen printing & our own brand, Marker 28 Apparel. Please say a prayer for us if you would as we embark on this new venture. Julia & I also just returned from our yearly visit to NIH. She is still mostly stable, I feel like I say this a lot but it's the only way I know to describe her condition. We do see small bits of decline both physically & cognitively but for the most part things haven't changed much with her condition over the last year. The most notable change is with her swallowing. The folks @ NIH do a swallow study on her every year to monitor this. Recently Julia had a case of pneumonia, which we thought was just caused from a virus. Turns out it was aspiration pneumonia. So it was recommended that we immediately begin thickening her drinks to honey consistency  & when we came home find a surgeon to place a feeding tube. Not exactly news we wanted to hear, but in the course of this disease not uncommon or totally unexpected. I'll post more about the surgery after meet with a surgeon & get everything scheduled. One thing in life is always certain, changes happen, good & bad. I've learned if you're not flexible enough to bend you'll end up breaking.