- When you are missing your #Orioles baseball. #birdland #hotdograce #ua #mustardfan instagram.com/p/B-no4yjj81O/… 1 day ago
- No one better to get “corn-teened” with as we say here in Baltimore. Coming up on 20 days at home with 3 kids while… twitter.com/i/web/status/1… 2 days ago
- This is the end of conventions as we know them, right? No one will want to go to an enclosed space with lots of peo… twitter.com/i/web/status/1… 1 week ago
- You know we are in bad shape when people on the Neighborhood app are posting about Costco having toilet paper! https://t.co/8O3KZqcBdg 1 week ago
- She did it! #bike #notrainingwheels #optoutside instagram.com/p/B-R2X7rDZI6/… 1 week ago
- Happy #OpeningDayAtHome #Birdland! instagram.com/p/B-OBFw3DE17/… 1 week ago
- Getting into family stained glass chalk art like everyone else. #quarintinelife #chalkart instagram.com/p/B-BCSCVDX-N/… 2 weeks ago
a collection of random thoughts and ideas from me, her, and sometimes us
BBA: July and August
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!!!