so, what's better? being up all night or literally listening to your baby whine+scream all.day.long? the jury is still out on that one. we're also back to crying for a few minutes when i lay her down for naps and bed time. i hate that. it doesn't last long though...maybe a minute. but it still sends my anxiety through the roof and back again. and i hate her going to bed so upset. i much prefer our normal sweet, peaceful routine. obviously.
the next stop on our little journey was visiting the developmental pediatrician. this was the appointment that i was dreading the most. hearing that emerson was going to suffer a lifetime of problems was just something i didn't feel like i was ready to hear. we saw dr. norwood at UVA on 5.20. our appointment was at 8am. butt crack of dawn. we arrived thirty minutes early like they asked. emerson gets up as soon as someone showers [even with her sound machine on] so she was up at 5:45am. by the time we got there, she was ready for a nap. and if you remember anything about emerson, it's that when she's tired...she wants her crib. she will not sleep anywhere but. the doctor didn't even show up until after 9am. he was late. seriously? so far, i've not been impressed with UVA. at all.
he was a very abrasive man. mark and i both didn't feel comfortable with him. emerson sat on the waiting table and i kept shoving puffs and yogurt melts and mum mums at her face to get her to calm down so that i could listen and focus. i didn't want to miss a single second. he didn't interact with her at all. he checked her ears and touched her legs a few times. and that was as far as his interaction with emerson went.
and we left with the following news:
emerson has low muscle tone. this low muscle tone will never go away. it is due to a neurological disorder. it has caused her to also have the diagnosis of developmental delay. she will learn, through therapy, to compensate for her low muscle tone. she will not be a star athlete. she will also most likely suffer long term from this...in the form of gross motor problems, learning disabilities, potential speech delays, mood disorders, bipolar, adhd and anxiety issues.
uhm. what.the.hell? i told everyone in the room that i thought i was going to throw up and i started crying.
he seemed very surprised by my reaction. and i suppose it's because what he sees on a daily basis can be way worse than what he just told me. but, to me, he just basically said...take everything that you dreamed up for your sweet baby girl and toss it right down the freaking drain.
i'm sitting here with the paperwork that we received from him after our visit. for the first time i am sitting here reading through it. it was not a good
global developmental delay. which means she's exhibiting delays in most, if not all, areas. i don't really agree with this. she can't roll, bear weight on legs, or crawl. and those are all gross motor areas only. but whatever. she babbles, when she's not crying. he acted like she's not babbling at all. she's not saying the 'm' yet though. so maybe she is having speech difficulty? who knows? her development is disordered. she is advanced in some areas that she shouldn't even be at this age...yet she can't roll over.
his recommendations are as follows: i do not think that emerson will outgrow her neurodevelopmental difficulties. i do not think she has cerebral palsy, intellectual disability or autism [although when mark started talking about all the things she CAN DO, he said THAT CAN ALL CHANGE IN HER SECOND YEAR OF LIFE IF IT IS AUTISM. thanks. that makes me feel so much better. way to take something off of the table and then put it right back on]. i think the parents should follow through with the sedated MRI. i am making a referral to genetics. we are making referrals for PT and OT evaluations. i encourage mom to contact early intervention. once emerson turns one, i will recommend trying a sleep aide. mom needs to go to counseling. she did not seem particularly happy or open about these possibilities.
okay asshole. what mom would be HAPPY and OPEN to just hearing this extremely bleak future for her sweet baby girl? i'm still mad at him. i'm doing the best that i can do. sometimes it's good enough and sometimes i just plain shut down, give up and feel like running away. and forgive me if maybe i need some time to process this. he kept asking me about whether or not i'm medicated. even my own family doctor said, 'i can give you medication, but i don't think it will help. your situation is hard and medication won't change that.' if he's trying to help, he has a terrible way of going about it.
and as he left the room he said, and i quote: I HOPE I HAVEN'T UPSET YOU TOO MUCH. door close. no bye, nice to meet you, she's beautiful or you're doing a great job. none of those things. for being so smart, he seems like a real dumb ass to me.
-i've called early intervention. twice now. so far, nothing from them. the second time i called they had no recollection of my first call. so annoying. so after filling out everything over the phone for the second time i told them that i'm getting pretty good at becoming a nag thanks to UVA [and because i'm a wife, hehe]. i'll call back again today.
-we've had our PT evaluation. that will be my next post when i have a free minute.
-haven't heard from Genetics, OT or the GI department.
-MRI is scheduled for June 6th. i'm dreading it. my mom is coming for it and mark will meet us there from work.
and that's where we are. hard pills to swallow. i'm trying to keep my mind busy. my body has no down time, but my mind will not shut off or stop wandering. i've never been so exhausted in my life. i just wish so much that she were happier. it breaks my heart every day to see her so unhappy.
xoxo.
i should add pictures. i think i'll try to do that from now on. if i can remember. which i probably won't. but, the thought is there at least (:
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