Goodbye, 2015! Hello, 2016!
- Ethan got his own car, thanks to the Metamora H.S. robotics team!
- Ethan had PT in the pool for the first time!
- We celebrated Rare Disease Day 2015!
- I spent the night away from Ethan for the first time EVER. I actually did this on two separate occasions. Jeff and Ethan did better the second time around then they did the first, but I'm so glad that I was able to go on the short trips, even if it took me away from them. The first was to OK where I was able to visit with two fellow PBD-ZSD families. For the second I road the train from Bloomington to Chicago for the first time and attended a NORD conference in Downtown Chicago.
- Several dear close friends were forced to say goodbye to children who died because we still don't have life-saving treatment options for PBD-ZSD and thousands of other rare diseases.
- Ethan went to a dairy farm for the first time!
- We met and have gotten to know another family who has a little boy who was born with PBD-ZSD that only live an hour away from us. This is practically being next door neighbors for those of us in the rare disease world, since PBD-ZSD has an estimated incidence rate of 1 in 50,000 births. We consider ourselves blessed to call this family our friends. You can learn more about Max in the video below.
- We went on a mini vacation with Jeff's family in June and spent the 4th of July weekend with my family.
- We attended the 2015 GFPD Conference in Omaha, NE. We always look forward to the opportunity that conference provides us to be with other families who understand this disease and how it affects us as a family. It also allows us to have Ethan seen by some of the top PBD-ZSD specialists in the world and to learn about the latest PBD-ZSD research.
- Ethan turned 5 years old, and we celebrated with a house full of friends and family.
- Ethan started his third year of preschool at a new building in a Deaf/Hard of Hearing Plus classroom.
- Ethan's mobility improved dramatically in August, September and October only to then rapidly decline when his seizures came back with a vengeance. Ethan is now incredibly unsteady, almost always needs to hold someone's hand and his endurance has dramatically decreased.
- Jeff joined Ethan and I for the class field trip to the pumpkin patch.
- Ethan went bowling for the first time when his class went to the Bass Pro Shop.
- We enjoyed our first visit to our local Children's Museum/Playhouse during a family night sponsored by Easter Seals.
- Unfortunately, November and December were marked with multiple trips to the ER and admissions to the hospital, all seizure related. Ethan and I had our first ride in an ambulance since he was transported from DMH to St. John's shortly after his birth. Sadly, we got to do this not just once, but twice -- both times from school to the hospital.
January and February are going to be filled with doctor appointments as we'll see Ethan's orthopedic, neurologists (yes, he currently has 2 as we transition his care from one who is two hours away to someone local), geneticist, endocrinologist, dentist, GI, and eye doctors. School will also be starting back up for Ethan soon, and hopefully the seizures won't keep him home too many days and/or I won't get too many calls to come get him due to the seizures, because our little boy really does seem to love school. We are very blessed that he has amazing teachers and therapists.
My plan is to follow a 31 Day Scripture Writing Plan this month as a devotional. This morning's reading/writing/reflection was Isaiah 43:16-19:
- Salvation of friends, family, and all who don't know Jesus as their personal Savior and Lord.
- A closer and deeper relationship with Christ for all those who already know Him [this especially includes myself] and that believers would feel His presence in mighty and powerful ways, and that our lives would reflect that we know Him.
- Wisdom for all those who are studying PBD-ZSD and for the discovery of medical breakthroughs that lead to the creation of effective treatment options and ultimately a cure.
- Patience, wisdom, guidance, strength, comfort, contentment, joy and peace for Jeff, Ethan and I. PBD-ZSD is hard on all of us!
- An end to Ethan's seizures and that he will be able to regain his stability and strength of walking.
- January is Sanctity of Life month and our church is collecting formula, diapers, pullups, children's socks and underwear, coloring/activity books, and crayons/colored pencils with the goal of blessing our local crisis nursery, pregnancy center and various foster care agencies with these much needed items.