- June 25/26 vs SD. #orioles vs Manny 1 hour ago
- A careful curated box of recipes as well as a translated recipe book recently arrived at our house. Generations of… twitter.com/i/web/status/1… 2 days ago
- RT @elonuniversity: Thanks to all the friends of @ElonPhoenix for a great night of philanthropy and fellowship at the Night of the Phoenix.… 3 days ago
- Go buy something and support student athlete scholarships! twitter.com/elonphoenix/st… 4 days ago
- Great #Elon event and auction items! twitter.com/elonphoenix/st… 5 days ago
- It might look nice but it sure wasn’t. #hoco #ellicottcity #iced instagram.com/p/BtzjnWrBcxS/… 6 days ago
- 6 years since the #Ravens Super Bowl parade. 1 week ago
- Lady working at @Potbelly today sold us a soda cup knowing the soda machine wasn’t working and then looked surprise… twitter.com/i/web/status/1… 2 weeks ago
- Just hanging with my guy Chris Davis at @Orioles Fanfest! #bigfella #crusher #orioles #fanfest #letsgoOs #mybmore @… twitter.com/i/web/status/1… 3 weeks ago
- #Orioles #fanfest (@ Baltimore Convention Center in Baltimore, MD) swarmapp.com/c/7631UN7kowP 3 weeks ago
a collection of random thoughts and ideas from me, her, and sometimes us
Monthly Archives: August 2016
August 4, 2016Posted by on
At the beginning of July, we took the boys to their one year pediatricians appointment . . . a rite of passage almost. Everyone has told us that making it through the first year of twins is the hardest. We took our pediatrician cupcakes to celebrate because of how crazy the year has been and how impactful she has been on our lives. The visit did not disappoint . . . BBA is almost 19 pounds and his head circumference charted in the 9th percentile (a marked improvement on past readings and a good thing – you want your head circumference to grow as you grow). BBB is almost 25 pounds and thriving.
Yesterday, we had an appointment with neurology and learned the following:
- BBA has a chromosome 2 duplication not previously reported in research (a variance of unknown significance). Essentially, the duplication either means nothing or it is so rare there is not a large enough cohort of patients to do research yet. Additional testing is necessary and we will glean more information next week at our genetics follow-up appointment.
- We are scheduling an MRI to get a better look at his brain and optic nerve. For his brain, we are looking for growth abnormalities to assess areas for caution/concern as he develops. They think his challenges lie in the basal ganglia which, overall, reduces his risk for seizures and large-scale development issues moving forward. For his optic nerve, we are looking for strength and size which would help to determine intervention ranging from patching his eyes to glasses to surgery.
- BBA continues to have amazing cognitive recognition and development and even with the new information, his progress is remarkable.
In other news, BBA’s physical therapist has him standing now (picture below) which gives him a chance to development muscle memory, strengthen his hip sockets with the hope that he gains strength, and PLAY WITH BBB and @littlepund! The three of them have loved interacting on a different level. It is amazing!!!