the ultimate buzzkill

so on top of the bad sleep and the terrible sinus infection that emerson had for like two straight months, i had to go ahead and fracture her femur. mommy guilt forever over that one. i don't think oliver feels the least bit sorry.

so off we went to UVA. enter leigh ann lather, emerson's pediatric orthopedic doctor. she fell in love with emerson instantly. i will admit...she can be super duper charming. dr. lather put a cast on emerson's leg for comfort mainly and said she'd see us back in three weeks. she also urged us to switch doctors and demand an antibiotic for emerson and her sinus infection. i had been battling our first pediatrician for 27 days [yes, i kept track]. it had spread to her ears and her eyes and they were still refusing to give her anything. i guess i should add that dr. lather used to be a pediatrician.

so we switched doctors. and we never looked back. and at that point i wanted dr. lather to be my best friend.

we were scheduled for family pictures the week before emerson's appointment to get her cast off [mind you, she would have been in her cast a week longer than necessary, but that was just the closest appointment date available]. being the ridiculous mommy that i was am, i had ordered emerson the CUTEST outfit and because of the cast, it didn't really fit her right. so, i called dr. lather and mentioned the occasion and she agreed to meet us ON HER DAY OFF to take the cast off for us. ON HER DAY OFF PEOPLE. she's my hero. seriously.

after the cast was removed she took emerson and started examining her leg. dr. lather laughed and made a comment on how emerson must find having the cast off weird because she wouldn't bear any weight on her legs. i mentioned that i've been super concerned with emerson's development [mainly gross motor] and started noticing around five months that she didn't seem to be making any progress. not bearing weight on her legs, not rolling over in either direction. at almost nine months she STILL isn't doing any of those things. so of course she's also not crawling or pulling herself up or babbling either really. she is sitting up on her own though. i brought the issue up to our first pediatrician multiple times but they just assured me that she was just fine. even though i was always answering 'no' on all of those developmental checklists they make you fill out. in my gut i felt like something was wrong.

dr. lather sat listening to me pour my heart out. and she didn't rush me or interrupt me or make me feel like one of those super high needs, annoying moms. this wasn't my first time. so, she kindly started observing emerson more closely.

she reached emerson's head and immediately got quiet. she made comments like, 'i can't believe her pediatrician didn't notice this,' or 'i can't believe i didn't notice this when i saw her three weeks ago.' of course i started to get nervous...

basically, she explained that emerson has a bulging fontanelle (located under her soft spot above her forehead). she mentioned the word craniosynostosis. this means that the growth plates, or sutures, in her skull are fusing [closing] too early. when they close too early the brain doesn't have the room that it needs to expand. if left untreated, it can lead to serious health issues like seizures, mental impairment and eye/facial abnormalities/deformities. she mentioned having a total facial reconstructive surgery. i think i might have vomited in my mouth after those words. i left there after almost two hours with the advice to call our pediatrician and have him see us that week.

what.the.hell? this was supposed to be a happy day! we were getting that terrible cast off! we could enjoy baths again! and pajamas! and cute outfits! i got to the car and immediately called mark, who was at a conference out of the building that day. i was freaking out.

we saw our new pediatrician the next day. he agreed with dr. lather and we were sent straight over to the local hospital for x-rays. our pediatrician told us that he'd call us that night or the next morning. we never heard from him. that next afternoon, i got a phone call from UVA's pediatric cranio-facial plastic surgeon. well, her secretary. they wanted to see emerson. but they wouldn't/didn't/couldn't give us any additional information. they couldn't see her until may 19th. may 19th. they wanted us to wait until may 19th to find out what the x-rays showed? i don't freaking think so.

unfortunately after many countless phone calls into our pediatrician and the plastic surgeon's office...we really still don't know anything more. does she have craniosynostosis or not? what type? will she need surgery or not? is it affecting her development or not? is she experiencing pressure on her brain or not? maybe she has a headache and that's why she's miserable. does it affect sleeping or not?

thanks to a dear friend [ali, you rock my world], she put me in contact with another mommy whose little girl had the same diagnosis and the surgery at six months. she's now a happy, independent little four year old. she gave me the push i needed to be a more aggressive advocate for getting answers. UVA's office still won't call us back. and it's very frustrating. short of going there and sitting in the office and refusing to leave until someone sees us, i feel like we've done what we can. so, we have an appointment at the pediatric cranio-facial clinic at VCU on may 6th. and in the meantime we're going to continue bothering and annoying UVA until we see them on may 19th.

and that's where we are.

ps, i have learned that google can be the devil. and my bones are tired. and i should stop eating my feelings. the end.

xoxo.