WOW! So much to catch up on!

What a treat to look back at the blog and see Harper's journey and my families memories. I'm so upset with myself for getting too busy to keep up with the blog for the last six years. These last 6 years so much has happened. Harper attended PPCD, Preschool Program for Children with Disabilities at the school I worked for. She was there for two years, and it was a horrible experience. Harper didn't progress much, had lots of tantrums, and the teacher wasn't very good with her. Brian and I decided that private school would be the best option for her. We packed up and moved out of our dream home in The Woodlands and moved to Houston for Harper to attend The Briarwood School. WE LOVED, LOVED, LOVED the school. Mrs. Brinkmeyer was her teacher there for 4 years and Harper progressed SOOOOOOOOOOO much and was so loved and did so well. Her teacher introduced Harper to a communication device that they worked on with her, and now Harper communicates iwth us via sign language, gestures, or her "voice," her communication device. In July of 2016 Harper had a follow up appointment with her geneticist. We had one every year. While we were there were told that they had found a diagnosis for Harper. At he time she was 1 out of 15, and it was called Okur Chung Neurodevelopmental Syndrome. We were shocked and in tears. The only downfall was it was such anew syndrome, they didn't and don't have a lot of answers of what the syndrome is like. Since then, we've gone to an OCNDS conference, made friends, and now I'm on the board for the foundation. In June of 2017 Brian and I moved into a townhome in the Memorial area. It was perfect for our family in a great area, totally updated and move in ready. Unfortunately, on our wedding anniversary our house was flodded by Hurricane Harvey and we lost everything we owned that was downstairs. It was 6 months of work, and we had used our entire savings to rebuild our house. It was a very tough time for our family, but we presvered and worked togetehr to get through it, and get back onto our house. In July of 2019, our family grew and our sweet Aspen joined our family. She is a full bred Siberian Husky and we just love her so so much! Then 2020 happened... the year of the pandemic! When the Coronovirus hit and everyone was at home, virtual learning, and wearing masks. We made the tough decision to take Harper out of private school, because it was so much money and to do online learning. We put her in the public school by us, Frostwood Elementary, and it has been AMAZING!

What could it be?

On August 15th, Harper had her second MRI. My little girl is such a trooper and my husband is my rock as we go through this journey together. For this MRI we (or should I say Brian) had to hold her while they put in her IV. Sweet girl was terrified at to what was going on. Then Brian carried her as I followed to the actual room where she would be getting the MRI scan. They then put the anasthesthia in the IV and Brian and I sat there as we watched Harper's eyes rollback into her head as she drifted to her out of concious state. It was extremely sad to watch! They made us then leave and wait in the waiting room for about 45 minutes, until they called us to go help wake her up. Within 10 minutes she was awake and we were on our way home. 10 days later we went back to the neurologist to find out the results. From the doctor he said that her brain is "significantly abnormal." The white squiggly lines on the outside of the brain were more straight (they should be squiggly.) and the cerebellum (the internet part of her brain) was very thin when it should be think. He said that the reason why is that Harper has a chromosome abnormality or irregularity. He said it happens in 2%-4% of all my first time pregnancies. It is not genetic because genetics would be that Brian or myself passed it to her.

We told him that we had an appointment with a new geneticist (for a second opinion per her pediatrician) and he said that if they could not find a more accurate diagnosis then to close the door. He said we know it's a chromosome