life as we know it

i thought seeing the Pediatric Physical Therapist would help me see a bright future, instead of the future that i have in my head. our appointment was at 3:30. we got there early so that we could feed emerson. of course it was a big cluster mess. we sat in the waiting room and no one was to be found. mark eventually had to hunt someone down and they directed us to the right place.
the therapist was very nice. she had a great personality and was very loving towards emerson. emerson let her pick her up and play with her for about ten minutes. and then in true emerson fashion...she ended the appointment hyperventilating and screaming. she was literally covered in sweat when we left. the therapist agreed that she is a very hard baby and would be a very hard patient. she felt like emerson could benefit from PT 3 times/week. she knows that we can't drive her to UVA that often. we are going to research finding a pediatric PT closer to home while we wait for Early Intervention to call us back. she gave us some home exercises to do in the meantime. it's been a complete disaster. it pisses her off and then she's done for the rest of the day. and i have no idea what i'm doing.

she doesn't feel like emerson will crawl at all. and that she will walk late, which we expected. when we asked how late, my heart sunk to my feet when i heard her answer.

CLOSER TO HER THIRD BIRTHDAY.

three?! that was absolutely not at all what i was expecting. i am still processing this. i can't imagine still carrying around a three year old. she won't be able to play with her friends. will anyone want to be her friend? ainsley was in pre-school two half days a week. how could emerson do that if she can't walk? how will this contribute to her irritability if she can't get anywhere? if she can't crawl OR walk? what if she ALSO exhibits speech delays?

will she run and jump? PROBABLY. not definitely. maybe yes. maybe no. to us these seem like pretty important skills to have. emerson may never reach these goals.

she said that children do surprise us sometimes. and maybe she will crawl or walk sooner but i don't want to hold onto an unrealistic goal and she doesn't want to give me an unrealistic timeline just to spare my feelings.

needless to say, mark and i left there trying to accept that this is where we are and probably will be for a lot longer than we thought. we have a long, hard road ahead of us. and taking it hour by hour at this point.

the good news is that she doesn't see any delays in fine motor skills. and she seems pretty on schedule for speech other than not saying 'mama.' emerson does this weird thing with her mouth that worries me so much and i keep forgetting to say something. it's like she's screaming or trying to talk. her mouth opens really wide and her eyes bulge out of her head, but nothing comes out. it's like a really strange, violent yawn. see picture below. it happens if she's excited or upset or sleepy...seems sensory related. i get more pictures of this than i do of anything else. will speech come? will she be able to talk? she doesn't babble often.

i worry myself sick over what her future may look like. literally sick. logically i know there is nothing i can do. but, i'm blessed with the worry gene. and worry i will. because that's what moms do best, right?

let's end on a happy note. miss emerson clapping her hands.

xoxo.

dropping bombs like whoa...

dare i say this out loud? as in, via the internet. emerson's sleep at night has been pretty good. waking up only 1-3 times. so you'd think that would make her irritability decrease, right? am.i.freaking.right? yea...not so much. she has been so unbelievably cranky pants the past couple weeks. so i feel just as exhausted during the days...even if i am getting more sleep. don't say teething. don't.you.even. i know what you're thinking over there. the answer is no. just no. she's not teething for ten straight months...day and night. i'm not saying teething never contributes, but she's like this regardless.

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 day week two weeks for me. the paperwork says this:

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 (:

the calm after the storm

ah, do you hear that? peace and quiet. emerson is napping upstairs and ainsley is at pre-school until noon. pre-school days have become my one saving grace; specifically during these last two weeks. to catch up on the endless housework and the mountains of dog hair, to actually eat breakfast and enjoy an entire cup of hot coffee, and to just catch my breath.

my day started off like it normally does...mass chaos. at approximately 6:15 every morning. emerson's crying screaming [even though she's fed and changed and has a plethora of toys surrounding her], ainsley is whining every .5 seconds about wanting breakfast and the dogs are literally up.my.ass. i'm tripping over them and stepping on their paws and tails as i'm shuffling from room to room trying to tackle the morning before i stab my ears out with the nearest sharp object from all the crying. can you feel the stress?

most mornings i think to myself: jeesh. for being the most non-needy person on the planet, i sure have a house full of super needy living things up in here. blame mark? sure, why not.

i've survived another morning. i've bounced emerson from room to room to room and switched up activities every minute for the last two hours...long enough to justify trying for nap time. all while feeding, dressing and getting ainsley ready for pre-school. and it was successful. and here i am.

we have had both the VCU and UVA appointments. i didn't hate the doctors at VCU, but i didn't leave the appointment feeling full of the knowledge i went there for. they closed doors, but weren't willing to open any new ones for me. i felt a little broken. they spoke their smart doctor talk and at the time i think i understood, but as soon as i left i felt all confused again. and so did mark. emerson screamed in my arms most of the time so i was overwhelmed and probably half listening/focused to begin with. so we decided to keep our appointment with UVA. and i think we are both glad we did.

the night before our appointment at UVA, i broke down. i'm talking serious mental breakdown here people. for about five straight hours. i just couldn't get my shit together. it's such a roller coaster ride of emotions. mark sat with me the whole time...not making me feel crazy and verifying that i have every right to feel my feelings. even though sometimes they make me feel guilty as hell.  i love my sweet little girl with all of my heart, but when we have these bad times that last weeks or sometimes even months, i feel so much frustration and even anger that my family spends their days (and nights) in misery. when nothing you do makes your beautiful baby happy...that's a low feeling. the anger i feel is mostly because i have this beautiful little blessing. this blessing that many women and families would kill for. and i love her and i appreciate it and i try so hard not to take this blessing for granted. but, when you have this beautiful blessing that seems so miserable...you feel like you can't enjoy her. and you desperately want to. that's all you want to do. and then you find yourself feeling sad/resentful/pissed off when you see other families enjoying their babies and their babies enjoying their families. mark and i...well, that's all we want. really and truly.

i feel like i missed out on this time in ainsley's life because i was working. and i hated that. now, with emerson, i feel like i'm missing out on this time in her life too. and, well, that really just stinks!

anyway, i'll get to it (:

the doctors at UVA and VCU both confirmed that emerson has Mild Metopic Craniosynostosis. Her frontal (metopic) suture has closed early. the rest of her sutures appear to be open still. however, both hospitals felt that because it is a mild case that she will not have to have surgery. which is GREAT! and we feel sooo relieved about that. they feel as though the ridge on her forehead will not grow any larger or more deformed and she will not experience any permanent delays or issues because of the early closing. but, i broke down again in the office in front of everyone. another closed door. don't get me wrong, i'm thrilled. but, now what? i could tell the plastic surgeon was ready to leave the office. they can't help us. she doesn't require their services. good luck. see you later. but i refused, REFUSED to leave there until someone listened to me. CAN YOU NOT SEE HER SCREAMING RIGHT NOW?! SHE DOES THIS ALL DAY AND ALL NIGHT. NO, I'M NOT EXAGGERATING. HELP ME. HELP ME!!!!! PLEASE DON'T MAKE ME GO BACK HOME WITHOUT SOMETHING. GIVE ME SOMETHING. yea, i went a little nuts. but, i meant it. i also asked if i had to be the parent that refuses to leave...because i would have. i was definitely at that point. we are desperate for answers...desperate to have our happy baby back.

the plastic surgeon called the neurologist in. i loved him. he listened to me. he sympathized with me. and he agreed with me. this amount of irritability is not normal. so, he created a plan for us:

1. have a test done that will FOR SURE rule out that she isn't experiencing any pressure on the brain. pressure on the brain could cause her major discomfort...like having a headache. could explain her constant irritability. they don't seem to think this will be the case, but he felt better knowing for sure and giving us that peace as well. if she happens to have pressure, we would have to revisit the idea of surgery.

2. have an MRI. rule out or potentially discover any issues there.

3. see a Gastroenterologist. explore potential GI issues.

4. keep our appointment with the Developmental Pediatrician on May 20th. this scares the shit out of me honestly. i just can't even think about this or talk about this. i'm just not ready to accept or learn about potential lifelong disorders.

so there it is. our plan. who knows how freaking long we'll have to wait to have these appointments/tests. but, for once, a doctor didn't just close a door in my face without helping me to open new ones. they listened. they saw. and they agreed. that emerson needs some help. and we'll do what we need to do to get her the help that she needs.

xoxo.

ps. if one more person tells me that maybe she's teething...well, i might just punch them right in the face. teething for 7 straight months? yea, i don't think so.