Surgery Date

 So a lot of you know for several years now Julia has had to have her drinks thickened to a nectar consistency, thicker than water but not as thick as honey. This is to prevent her from aspirating the liquids (aspirating is when the liquid goes into the lungs instead of down the esophagus & into the stomach where they belong). In patients with NPC the flap @ the back of your throat that your brain is responsible for closing when you drink(to keep liquids out of your lungs) doesn't work properly. Either it doesn't close off the airway in time to keep the liquids out or it doesn't close completely, either way it lets liquids in where they shouldn't be which leads to infection or pneumonia. Thankfully Julia has only had one bout with pneumonia & hopefully it will be her last. She is scheduled to have surgery this Friday November 30th to have a feeding tube (also known as a g-tube) placed. She can still eat whatever she likes by mouth as she is not having trouble with solids currently but all of her liquids will then go through the tube instead of her drinking them. She is nervous about the surgery but has adapted to the idea very well as she always does. I'm so thankful for her sunny outlook & easy adaptability to whatever this disease throws @ her. She is teaching me how to be flexible so I can bend & not break, just like her. She will have her surgery @ Shands in Gainesville & will have to stay several nights before coming home so if anyone wants to come visit let me know, I know she would like that 😊

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.

Graduation!!

Totally unsure how this day has crept up on me so quickly. Today Julia received her High School Diploma. I couldn't be more proud of this girl, she continues to amaze me! I can still remember a day a short time ago when I was sitting in the back of a freshman meeting crying as they talked about all the wonderful things that these students would be doing & accomplishing over the next 4 years. I wasn't sure how Julia would be in 4 years, yet here she is, graduated & still trucking along amazingly well. We continue our biweekly trips to Shands & the medicine seems to be keeping her mostly stable. Hoping in the near future for FDA approval of the drug, but time will tell. Thanks so much for reading & God Bless!

New Year Reflections

The start of a new year is usually a time we find ourselves reflecting on the events of the past year & making plans for the year to come. We definitely have a lot to reflect on from the past year & also a lot of upcoming events to plan for during this year. We are so thankful for the trial continuing to be accessible so close to home & that Julia continues to tolerate the treatment so well. We have some amazing doctors @ Shands & have developed a routine that feels like normal to us now. She continues to do well & is looking forward to the Tim Tebow Foundation "Night To Shine" in February. This will be her 2nd time attending & she is very excited. Also I neglected to mention back in 2016 Julia became an Aunt for the 1st time & I became a grandma. It was a very exciting time in our family & now in a little less than a month Julia's sister Rebecka is due again. I can't tell you how thrilled Julia is to be an Aunt, she takes her job very seriously. Julia also has a birthday coming up @ the end of February & it's a BIG one, 18. Some days it seems unreal that we've made it it this far & she still seems to be in such good shape physically. If that's not enough excitement, Julia is also on track to graduate high school in May. She is really looking forward to entering adulthood, she is hoping to work with vocational rehab & do some on the job training after graduation. I wonder how long her enthusiasm for adulthood will last? Knowing her it will last, she continues to amaze me every day & I am so thankful for every single day God chooses to bless us with her :)