Bianca is 1! Happy Birthday! Cha-cha-cha!
Bianca is now 12lbs 14oz and just about 25 inches. Woo hoo! Renal ultrasound and echocardiogram came back ok. OT therapy 2x a week to start soon. Speech eval done. Bianca and Daddy will be busy!
About time for an update! What did we do? Went to have a renal ultrasound and an echocardiogram. Didn’t discuss the results yet, I guess at the next check up. Bianca did not enjoy the echo nor the ultrasound. She kept trying to swat the echo lady’s hand to stop it.
Had OT evaluation. Should be receiving once a week…need to do speech eval soon.
What else? ooh! Parent-tot swimming classes. Even kuya took Bianca once. As long as the water’s not too cold, she likes swimming. Bianca kicks and swats at the water.
Bus ride to NYC! Went with mommy down to Rockefeller Center on the bus to meet with mommy’s 5th grade teacher found through facebook(!)
Anything else? Finally using Baby Bjorn again and this time she’s not swimming in it!
Got a new music kit. Loves it. Makes lot of noise with the tambourine, maracas, cymbals!!!
Lots of new things this past month. Pictures to come soon (if Mommy doesn’t procrastinate and kuya lets her use the computer…)
Soon - Bianca turns 1!!!
Bianca had her 9-month check up today, although she’s really almost 10 months…(because we screwed up her appointment!) She’s doing well and is now 11 lbs 8 oz…and we don’t know how long because the assistant didn’t say it out loud and we forgot to ask! Bad parents. No shots today but they did prick her finger to draw blood and she didn’t like that… So now we need to schedule the echo cardiogram and the renal ultrasound.
She also finally started PT yesterday with Patty! Hooray! Play time! She is doing well and is tracking at a 5 month old level, although her standing seems to be above normal! She does love to stand. So now we have to get her to sit still more and build up her stomach muscles.
Bianca did lots of turning on the bed today. Hooray! Turn turn turn.
What else? Had some more appointments! Ophthalmologist, neurologist, geneticist, physiatry, physical therapy evaluation, case workers, oh my…
So far, most things are ok aside from being behind with the milestones. Physical therapy should be starting soon at home. And then more evaluations and other doctors!
Who? 
Well, we found out about a week or so ago that Bianca has Cornelia de Lange syndrome. It is a rare genetic disorder which you can find out more about at cdlsusa.org. After having gone to a neurologist, we were referred to a geneticist who diagnosed her based on her physical features — short, long eyelashes, very defined eyebrows that meet, short upturned nose, etc… Bianca does seem to be on the mild side although we will be going through lots of checks (eyes, ears, heart, kidneys…) to make sure all is well. She should be getting physical therapy soon also to help her develop her motor skills.
On a lighter note, she is enjoying eating her mushy foods and making a big mess! She took her first plane ride and also went swimming for the first time at the Palms in South Beach (nothing like doing it in style!) We’ve found out since then that cdls kids enjoy swimming so we’ll have to go more often.
