- Driving on 695 shouldn't be this much of a pain. 1 day ago
- To celiac or not to, that is the question. @ Johns Hopkins Children's Center instagram.com/p/BaTs8bLhcCp/ 2 days ago
- "Dad, how do we get into that pool? Is there a dog over there?" . . . To have the zest for all… instagram.com/p/BaSKyZahjcS/ 2 days ago
- Why is the sound on Fox always so terrible and why is this game on Fox? 2 days ago
- How many more pumpkins would be picked if you had backyard pumpkins? (We had more than 12)… instagram.com/p/BaQAtYghrc1/ 3 days ago
- "Maybe we should go because I'm a good celebrator" - @littlepund in reference to the open house at @EllicottCityVFD. 3 days ago
- Anyone participating in the #tealpumpkinproject in #HoCo? #glutenfree 4 days ago
- RT @Orioles: #FridayThe13th could be your lucky day! Retweet for a chance to win a photo autographed by Manny Machado! #Birdland https://t.… 4 days ago
- This tweet didn't age well. twitter.com/zackpund/statu… 5 days ago
- The Nats might finally break thru and win a playoff series. 5 days 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!!!