the post christmas blues

we just returned from a week in Kansas with my family. it was awesome spending Emmy's first Christmas with them. it was also her first flight and she did amazing. . .no crying, no blowouts, no major issues. amazing!

she doesn't travel light, but despite lugging way too many bags and accoutrements for my liking, it was pretty smooth and easy. the loudest noise she made on the plane was a hiccup, so i can't complain about that!

we got back to LA today. . .to crystal clear blue skies and 70 degree temps. but i must confess, i'm a little down in the dumps. i always feel a little sad after the excitement of Christmas is over. and i especially feel sad after leaving my dear family so many miles behind and not knowing when i will see them again. i really wish we were closer and could share those visits more often.

Emmy flashed her evasive smile more than ever and the largest one i ever saw was delivered in response to her sweet little cousin Griffon. i think she was pretty excited to see little people that were closer to her stature.

i will leave you with these shots courtesy of my sister.

Emmy and me with my niece Jessica

A Christmas Eve prayer

Little Miss Bright Eyes

All dressed up for Christmas Eve

Adam and my nephew Griffon

it goes without saying

visiting Santa and getting the obligatory photo was a necessity. fortunately, we had the pleasure of doing this outing with our dear friends Holly and her son Maceo. we had the luck of finding the one-and-only REAL Santa too. there are, as i'm sure you are aware, many imposters out there. but we found the real one indeed. and this is the result:

and not to fret. . .Emmy has many more holiday-specific outfits to model in the plethora of photos we'll be taking over the next few weeks. so stay tuned!

So Many Activities, So Little Time

after a week in the hospital for a severe respiratory infection, emmy is home, busy and doing well. this week she tried swimming in her new therapy pool. she wears a little inflatable neck ring and can move freely in a free-standing pool of warm water. the only place it fits is in adam's oversized ultra-luxurious spa shower. let's just say i made a few errors filling it and flooded his bathroom. he was irritated and ready to ban us from further aquatherapy sessions in his room. he even went so far as to move the pool into my bathroom and squeeze it into my bathtub where it did not fit. but we worked out the kinks and although we are on probation with him, he's letting us proceed for now. how could he possibly say no to emmy?

so without further ado, here is her first session in the pool. she was sleepy and not really into it, but she tolerated it for a few minutes.


for the second session, her nurse vanessa was helping me. she was more awake, but still not too sure about the pool. it may take a few more times, but we'll stick with it. she didn't like baths at first either and now she LOVES them.


and finally, a month or so ago one of her therapists brought over a contraption called a "Little Room". the idea is to put her in there and let her move and explore, totally on her own, without any interruptions. it helps her become more aware of her body and the cause and effect of movement (ie: move my arm and a toy will move, or if i move, it's actually me making that sound).

she started out only tolerating being in the little room for a few minutes at a time and not really noticing the various dangling toys. well what do you know, on saturday i put her in and she hung out for at least 30 minutes, batting at toys, grasping beads and just in general seeming quite content.

we've been spending time in the little room each day since and i can honestly say i think she likes it! when her OT saw her in it earlier this week, she was very impressed and said our Emmy has progressed beyond "curious" and now she's "ready to play"! we like the sounds of that.
WARNING - TURN YOUR SOUND DOWN BEFORE WATCHING. SOMETHING'S WRONG AND IT'S NOT A NICE SOUND

Sabado Gigante

It was one small roll for Emmy, one giant Saturday at the Hamilton house (aka Palm Ranch). Little E was laying on her tummy, fussing just a bit, when all of a sudden she rolled right over. I couldn't believe my eyes, so I quickly put her back on her tummy and she rolled right over again. I yelled for Adam. He watched her do it again. I said, quick, get the video camera. I barely caught this one:



Then I tried again and caught this one:



Then she was done rolling.

But I did catch this little clip of a nice pushing up without too much fussing right before my camera ran out of juice:



I do believe our little Emmy Bear is making progress. Slow and steady progress. But then, wasn't it slow and steady that won the race? Yes, I thought so.

bootcamp pays off

months ago i mentioned we are on a strict "tummy time bootcamp" schedule. well the bootcamp continues and we are starting to see the results in miss em's progress. she still has a tough time resisting the "twist" and pushing up properly. what does this mean exactly? one of her challenges is controlling high muscle tone that takes over and causes her to go into what's called an "asymmetric tonic neck reflex" or "atnr". this is a nasty primitive reflex that is involuntary. most babies that are developing typically naturally lose this reflex after a few months. em still has it and it's triggered at the most inopportune times. it looks like she is pushing up, but really, the reflex is doing the work causing her muscles to stiffen and she has no control over it. it does not help her increase her neck and trunk strength. it is bad. it is our nemesis. but she's getting better at learning to control it and getting out of it. and then she is able to actually use her muscles and push up for real. here's a video showing her ability to fight her way out of the dreaded atnr and do a proper tummy time push up. she works very hard for this. bless her little heart. as always, she's on her own developmental schedule and we are thankful for any progress. oh, and the fact that she is on her tummy for any length of time without screaming is also huge progress. now can we get a collective "hooray!" please?

which one of these is not like the others

last night we visited the pumpkin patch. actually, it's so much more than just pumpkins. we have the fortune of having the pierce college halloween harvest festival just a block from our house with corn mazes, carousels, hay rides, haunted houses, a petting zoo, bounce houses and so much more. of course this is all much to look forward to in years to come as emmy gets bigger and can enjoy everything it has to offer. this time we just stuck to the pumpkins. emmy wanted to wear her beloved strawberry costume, so we obliged.

she felt a bit out of place with the pumpkins. but it was as we were leaving that she realized where she really belonged. . .with the other strawberries!

i'm a strawberry, not a pumpkin!

in other news, emmy got a new swing. this is swing number 3 in the less the 6 months that she's been home. swing number 1 ran on batteries and we soon learned it would be much more efficient to buy a new swing that had an adapter than continue replacing the batteries every few days. swing number 2's motor blew out last week. no surprise, she spends A LOT of time swinging. so swing number 3 is in full effect and she seems to like it just fine.

no words needed

added security

me thinks it best to add a little security to our lives and hence the decision to make our blog private. so if you are reading this now, you've sent me a request to access this blog. thanks for keeping up with us!

this week was a little rough. our girl had her first sickness since coming home from the hospital. oh, she's had plenty of medical challenges, but up until now, her health has been good. we're actually really thankful that we've gotten this far without any sickness!

but i have to admit, it's been a little scary. we had no idea what to expect. she started sneezing and coughing on sunday night and we thought she was having allergies. but by monday morning, it was clear that she had a cold. so we set up the vaporizer in her room and added echinacea and vitamin c to her diet.

although she's uncomfortable, she's actually been handling it quite well. her coughing has been productive and she's gotten a bit better through the course of the week. it's good to know that her little immune system seems to be strong and able to fight back. go em!

what dreams may come

it's funny, all the time people tell me that Emerson was in their dreams. i'm always jealous as she's never made an appearance in my dreams. . .that i remember anyway. . .until last night!

my friend Rachel once shared a sweet dream where she said Emmy was saying little words and we were laughing at how cute she was. Rachel was holding her and walking her around to see different rooms in her house. in every new room she'd be scared at first, but she'd just tell her all about the room and she'd understand and then enjoy hearing all about it.

my friend Sonja just shared that Emmy was in her dream last night and was smiling.

and in my dream last night, i was leaving the house. i handed Emmy off to the nurse. just as i was walking out the door, i looked back and she was staring at me with a sad look on her face. i asked her if she wanted to come with me and she emphatically nodded her head yes. i remember feeling such joy that she understood and of course i went back for her and off we went.

dreams fascinate me as i'm always trying to figure out exactly what they could mean, and rarely come to any conclusions.

i shared my dream with my mom and without hesitation, she said: "That is a sign you are on a journey together. We are going to see great things."

i agree.

in other news, our E is cutting her first tooth! i have mixed feelings about this. in some ways it's exciting, in other ways it saddens me and in every way it's exhausting. she is clearly not happy and sleeping very poorly, waking up screaming several times a night. she typically wakes up every hour or two. now she's waking up every 30 minutes to an hour! i've been coating her bottom gum with teething gel and giving her Tylenol too when she is beyond comforting. it also seems to help if i massage her little gum and sometimes she bites down and it seems to help relieve the pain. oh boy. . .here we go!

and a look into our lives this week.

bath time

bumbo time (aka naptime)

daisy pose

sunset over the palm ranch

the week in review

so we've had a pretty positive week around the ol' palm ranch. of particular note, our emmy girl is getting really close to smiling, we believe. we spend a lot of time playing with her legs and feet. . .stretching them, bicycling them, keeping them moving. this started months ago to attempt to loosen them up. they used to be stiff all the time she was awake. they have gotten much better and are just stiff when she gets upset now. and they are much easier to loosen back up. last weekend during grandpa's visit, we were showing him how we work out her legs and she suddenly had a very distinct curling up of the corners of her mouth. it wasn't a full smile, but she certainly looked happy and it wasn't a face we had seen before. needless to say, it delighted us both and we carried on trying to get that smile. since then, every time we play with her legs in that particular fashion, she seems to get happy and consistently so. so guess what i've been doing? yesssssss. . . playing with those legs!

i've yet to capture a great photo, but you can kind of see the glimmer of content in her face here:

therapy sessions continue to be positive with all her therapists acknowledging how much more organized she is and her ability to handle much more in terms of movement, positions, objects, etc. dare i say, she even actually seemed to be exhibiting a bit of interest in an unusual "toy" her developmental therapist brought over today! it was a silver strainer with a smooshy ball, slinky and a strand of beads all dangling from it. the rationale was to provide a metallic visually interesting object with various dangling textures. she seemed to look at it a few times and actually bat at the ball, beads and slinky and open and close her hands around the objects ever so slightly. let me tell you, that's a big deal around here, so we'll take it!

yesterday at feeding therapy, the therapist suggested trying baby food! i had to admit to her that we actually had already tried mango puree at home. she didn't give me too much of a hard time. but anyway, that was exciting to be getting the go ahead to be moving forward with new foods. not sure she was too impressed with the sweet potatoes, but they say to give each new flavor 10 tries before you officially decide whether they like it or not.

finally, we continue to work on the dreaded tummy time. and she's actually gotten to a point where she likes being on her tummy at times. . .and will fall asleep! well this kind of defeats the whole goal of tummy time and building up neck strength, however, we do like that she can settle and be happy in this position. we are always exploring comfy new positions for sleeping since she seems to have such a hard time staying asleep. so when we got her in this position and looking quite happy, i had to get documentation.

asleep at the wheel

So yesterday's neurologist appointment was pretty good and uneventful. He is pleased we haven't seen any additional seizures and suggested we could try decreasing her Topamax just slightly to see how she does. He said he'll likely want to keep her on some dose of Topamax for at least 6 months even if we don't see any seizures, as a preventative. He says she is still really high risk for having additional seizures. . .like 50 to 75% chance. After that, if she isn't having any seizures, he may want to switch to a different medication that has even less side effects (ie: doesn't make her so sleepy and allows her to sweat and regulate her temperature better). But for now, he believes the Topamax is the best option.

He went over the latest MRI with us and showed us the various areas of concern. He said it really doesn't look that bad. There are areas that show a bit brighter than normal and a few areas that show a bit darker. But the thing about an MRI of the brain is that it really doesn't say much. An MRI can show horrific damage and then the kid can recover quite well, and vice versa. It is again a "wait and see" to see what she does in her own time. He says the best thing we can do is get the most amount of therapies at the most intensive levels she can handle early in her life because this is when her brain is re-wiring and learning things. So that's what we shall do. I don't think she's ready for much more at this point, considering she already has one therapy session every day of the week. But as she gets a little bigger/older and can handle more, we will be looking to add some additional outside intensive therapies that we'll have to pay for (rather than what the government program and insurance provides). I've researched and found several that are offered in the LA area, so that is good.

He was also pretty positive about the strength of her neck and the tone in her arms and legs. Although her neck strength isn't where it should be (for a child without a brain injury), he did acknowledge that she has some, so that's good. And we just need to keep working on it because it's so important to all the rest of her development. Also the tone in her arms and legs isn't normal, but not horrible either (ie: she can loosen up her stiff arms and legs and have full range of motion). We've seen improvement in her tone over the last few months for sure.

So that's what I can tell you. Overall, we walked out feeling good about things and really thankful she hasn't been having seizures.

On that note, what you are all really waiting for. . .the latest pictures:

asleep at the wheel

trying on the new halloween costume. she's going to be a strawberry. . .and she's not sure she likes it

doing what we do best. . .hanging out in the back yard

a visit from grandpa

Rice Rice Baby

Emmy's developmental therapist brought over a new "toy" the week before last. She brought a big tub of rice for our Miss E. The idea is to help with sensory issues. She's not totally sold on it yet, but she is "tolerating" it. Here she is in the tub today.

another big day

we have another big day tomorrow. e is finally getting the ear tubes we've been anxiously awaiting. we have to be at the hospital at 5:30 am. ouch! but she's the first surgery of the day, so we are happy about that. please keep us in your thoughts and prayers. and for your pleasure, here are some shots from this past weekend courtesy of the wonderful simko.

love and support

There have been so many wonderful friends and family who have offered words of encouragement, prayers and support during the last six months. You all will never know how much that means to us. We weren't always able to answer the phone, return the text or email back, but it doesn't mean the message wasn't received and appreciated.

In the beginning, it was tough emotionally to answer the phone or respond with a text. We were going through so much and I found it easier to isolate. As time has gone on, I've been coming out of my shell more. I'm more willing and able to talk about what's going on. I'm more willing and able to have visitors. But there's also this deficit of time that it makes it tough to return every call, text, email. . .or to make it to every event or social gathering. There just isn't enough time in the day to work, maintain a household, eat, pay bills, clean, exercise Daisy and care for this sweet (albeit very demanding) child of ours. So to those of you who don't hold that against me, thank you! Right now I'm probably giving a little less to our relationships than you are, but that's the way it has to be. And I know the strong relationships will survive and flourish.

I also have a whole new set of "friends" whom I've never met in person all around the world. These are the ladies (and some men) who are experiencing the same (or similar) challenges as we are. To this group, I am eternally grateful. You ladies offer advice and knowledge deeper and better than the best doctors we've seen. Walking in the footsteps of the paths you have forged gives me hope for the future. Your children are beautiful, your stories inspiring and your spirits lift me up in my darkest hours.

And finally, for those who ask what you can do to help us. It's simple. It's less about the physical things, although we always enjoy a visit or a homemade meal or both! It's just being there through the thick and thin. We are doing better every day, but we still have a long road. Don't give up on us. Keep sharing the love, support and words of wisdom. We need that more than anything. I know it's tough to relate to what we are going through. We don't expect you to. But giving us your unconditional love through a simple phone call, text or email means so much.

With that, I'll leave you with a recent photo of our sweet girl.

family photo

adam and i had our first solo night time outing since having baby emmy last weekend. my mom was in town helping out with emmy while i was away on a work trip in nyc last week. the timing was perfect as we had been invited to the wedding of our very dear friends on saturday night. had my mom not been here, we likely would not have been able to attend. we've yet to find anyone to watch emmy on nights or weekends, although the hunt is on and i have a couple of candidates in mind. more on that later.

anyway, since we were nice and cleaned up for the wedding, we thought it a good time to capture a family photo. . .one that didn't involve me with a dirty ponytail and sweatpants. unfortunately, emmy was not feeling up to a photo session at this particular moment. but like any good parent, we forced her to participate. and this is what we got.

6 months down the road

Well it's unbelievable, but true. Our little girl is celebrating her half a year birthday today. I can't believe it has been six whole months since the best/worst day of my life. I'm not allowing myself to really think about what was happening six months ago today. I'll save that for the first year birthday when I imagine it'll be unavoidable.

In honor of this milestone, we decided Emerson should try real food. She tried mangoes. And I'm pretty sure she really enjoyed them. Here's the proof:

We continue to work on feeding therapy and she has made some slow and steady progress in her sucking and swallowing. Slow and steady wins the race.

On another positive note, we heard back from the neurologists about her 72 hour VEEG. It seems I was incorrect in the last post when I said she is having seizures. She is not!!!! He said they did not see seizure activity, but rather "activity that indicates ongoing risk of seizures, specifically arising from the left frontal and central region of Emerson's brain. This is the rationale for starting Topamax, which provides protection from infantile spasms as well as other seizure types." Well hallelujah. That's good news and we'll take it.

A tough week

precious feet before the poking began

I stood peering through a wire file rack, tears streaming down my face, as three doctors held down my precious baby. She was screaming to the point that her cry had dwindled to a low throaty almost mute sound. She had run out of tears. Her face was red. Her arms, legs and feet were bruised with puncture wounds from way too many failed attempts at placing an IV in her tiny veins. The doctors had asked me to help hold her down and keep her calm, but I refused. I was torn. I didn't want her to think I had abandoned her to let these horrible people hurt her. But I also didn't want her to think I would partake in anything that would traumatize her so much. I want her to know I am safe. I want her to know I won't hurt her. I want her to know that she is always protected in my arms.

So I hid behind the file rack. But much like when you cover your eyes because something is too tough to watch, I realized that I couldn't help watching. I needed to know that despite her pain, she was still there and still ok. So like when you open your fingers and peek through to watch the train wreck, I watched. And I cried. After failed attempts by four nurses and one doctor, one man was finally able to successfully place the IV on the first try. He then called me over and with much sincerity, looked me in the eyes and said: "I'm sorry that she had to go through this." And although it didn't make the pain go away for me or for her, it was comforting to know that this doctor seemed to care. There are too many who don't.

hanging out in the ER

We had checked into the hospital, via the emergency room at 8 am on Monday morning. It had been a bit of journey to get to this point. About two months ago, Emerson started having strange episodes that we feared might be seizures. Her risk for seizures is very high considering her history. Each time we went in for an EEG, there was not sufficient evidence that she was having seizures. But I knew in my gut that she was. So a few weeks ago, we went in yet again for another EEG at Children's Hospital Los Angeles. And finally, my fear was recognized. Not only did the EEG show she was having seizures, but that they were the worst possible kind, infantile spasms. Her neurologist seemed very lackadaisical about the whole thing and prescribed a medication that I knew wasn't even a frontline treatment for these very serious and devastating seizures. I knew I needed a second opinion and a doctor I had more faith in. I knew time was of the essence.

These are the infantile spasms. I share this video to help others wondering what these kind of seizures look like who may stumble upon my blog.


I had been trying to get in to the epilepsy specialists at UCLA's Children's Hospital with little luck. I knew I could try harder. So I put on my research hat, a talent of mine, and went to the internet. It didn't take much to find the direct email address to Dr. Sankar who is the head of that department. I took a shot in the dark and emailed him directly. Within a few short hours, he responded and the ball begun rolling. That was last Thursday afternoon and by Friday morning the plan had been made to check in for testing first thing Monday morning. We expected to stay only 24 hours for the EEG, but we ended up staying four days for a 72 EEG as well as a PET/CT scan and MRI.

EEG electrodes literally super glued to her head

So there is good news and bad news. The good news is, no hypssarhythmia showed up on the EEG. This is the very specific pattern that shows up on the EEG when a child is having infantile spasms. This doesn't mean she didn't have it before, nor does it mean it can't show up in the future. But we live in the moment, and for now, it is not there. And that is glorious. But she is having seizures. We haven't gotten the full breakdown of what types of seizures she is having, but we know there is some activity. So last night we started an anti-convulsant medication called Topamax. Finally last night, we both got to sleep in our own beds. What a wonderful feeling that was.

after the first day, a mesh hat was added to keep the electrodes secure against her head

Today, it is back into reality with a bang. In the hospital, it seems like the world stands still. But once I opened my computer, I realized it didn't. I have over 300 emails sitting in my work account and another 200 in my personal account. I have a list of projects that would have kept me busy all week, but now need to be done in one day. I wish I could catch up on the sleep I didn't get this week in the hospital. But I have to take advantage of the 8 hours I have a nurse today and try to get back on top of work.

in recovery, just waking up after sedation for the PET/CT and MRI

All this while, I feel the pull of my sweet, innocent, beautiful child. Because I know there is only one thing I can do to comfort her. I feel helpless in so many ways when it comes to her, but I know that holding her provides her comfort. It seems like doing anything but that is so completely insignificant.

But we will march on.

two steps forward, one step back

well it seems it's becoming more and more difficult to update regularly. our schedule continues to be insane. and when we aren't bouncing around to various doctors or therapies, we are just trying to squeeze in work hours while the nurse is here. and then once she's gone, it's typically pretty difficult to have free hands to type until about 10 pm. . .at which time i'm all too eager to do nothing at all (other than a bit of reality tv).

but emmy is currently fast asleep on dad's lap after a busy day. this morning she had an appt with neurologist specializing in movement disorders at children's hospital. emmy's brain injury is in the section of the brain that affects movement. she already shows significant delay in her movement abilities. in particular, she has a very weak trunk and neck for her age. her arms and legs tend to be very tense when she is upset. and she tends to get stuck in a twist to either the right or left side. however, we are seeing some progress. her arms and legs are moving more and aren't so stiff as much as they used to be. even the neurologist said he was happy to see her hands so open and moving. so that was good to hear.

on a not so positive note, we got confirmation of what we had feared. emmy is having seizures that are finally showing up on the EEG. the neuro is starting her on medication this week in the hopes of stopping them. unfortunately, these are showing up as a really disturbing and difficult to treat form of seizures called "infantile spasms". whatever you do, don't google that term. it's scary and even more so on google. we're trying not to get lost in the fear of it, but just do as we've been doing, live in the moment and do the best we can for her. ironically (or not) as soon as they were diagnosed, they seem to have disappeared. but these type of seizures are notorious for changing and evolving as the child grows. so we pray for a miracle and hope for the best.

today we also had an encouraging OT session. emmy was awake and alert and for the most part content during her whole session. let's just say that is leaps and bounds from where she was when we started OT and she would either shut down and fall asleep or scream bloody murder.

ahhh. . .lots more to report, but i've run out of time for now. so i'll just leave you with a new photo that was taken on sunday funday.

all things emmy

last week we actually had a whole week without any doctor's appointments. that was cool! we of course still had OT on Tuesday, vision on Wednesday, feeding on Thursday and development on Friday. but that's a pretty easy week, comparatively speaking.

this week has been fairly easy too. we only have one doctor's appointment and her daily therapies. on thursday we'll be going back to see the surgeon who placed her g-tube. we've had several complications, not the least of which is the darn things keep breaking and popping out. and this is not good. . .not good at all. eventually we will learn how to replace them, but thus far we haven't been taught. so the first time it popped out, we had to trek down to CHLA to get it replaced in Friday rush hour traffic no less. and we ended up spending our whole day there. the second time it happened at 2 in the morning. so we didn't encounter rush hour traffic, but we still had to trek to CHLA in the middle of the night and spend several hours getting it replaced. the third time it happened, our nurse was here and able to replace it. and finally, last weekend, when it happened, we were able to get our neighbor (a nurse) to come over and replace it. but this is getting ridiculous since a g-tube is only supposed to be replaced every 3-4 months. and so far we've replaced 4 in as many months. so hopefully we can get a handle on what the heck is going wrong.

of course, then there's the insurance company that doesn't want to pay to keep replacing so many g-tubes. but hello. we are not doing this on purpose. and she certainly can't go without it getting replaced. oy!

next week we have a busy Wednesday. she has a follow up with her GI doctor to see how her new feeding schedule is going, check in on her reflux, etc. she'll then see her pediatrician who sees her every 3-4 weeks. finally, we'll be seeing a new neurologist that i've been trying to get an appointment with for months. this guy is in high demand and was nearly impossible to get in with. but thanks to knowing the right people, not only did we get in, but we got in in July, when they are currently scheduling all the way in to December for first-time patients. (shout out to Holly!) he is a highly esteemed movement specialist and we hope he can shed some light on some of Miss Em's movement issues.

looking further into the future, we have an MRI scheduled at the end of August. this will be in follow up to the initial MRI we got just after she was born that showed damage to the brain. this MRI, we're told, will give a better picture of the overall damage and will hopefully show that some healing has occurred.

at the end of the month we will also go in for ear tube surgery. this will be to place tubes to drain the fluid in her ears and we are anxious to get a better idea of how well she is hearing after this surgery is complete. typically, this is an outpatient surgery, but Emmy will have to be admitted overnight for observation. so i will be staying in the hospital with her.

in other news, tummy time boot camp continues. today she actually had a full 5 minutes of no screaming, just a little fussing at the end. i only captured the last minute on video and she was pretty tired, but here's the proof.


and emmy continues to enjoy a good swing. i've shared her sleeping in the swing, so here's a little glimpse of what she looks like when she's awake and swinging.

first fourth

rockin the red, white and blue. . .where else, but in her swing.

a real update

we try to keep things positive around here and not dwell too much in the negative. it's a technique of survival. and when i don't have much good to say, i tend to stick with posting pictures or videos. because my baby girl always looks so cute in pictures and videos and that IS so very positive. but here's a bit more of our reality.

last week we had our 4-month check up with the NICU staff. they didn't really tell me too much more than i already knew. Emmy is definitely significantly delayed. she has yet to start "seeing" things. or at least she's not reacting like she is seeing things. she doesn't look at or track toys. she doesn't respond when something flashes in front of her face. she doesn't even really squint or turn away from bright lights. but despite all of this, we have seen what we consider some improvement in her eyesight. her eyes used to swim around and have a lot less purposeful movement. now, at times, she seems to actually be looking at something. and sometimes, it seems like she is even looking at us. that's always a good feeling. today, she was diagnosed (as suspected) with "Delayed Visual Maturation" or "Cortical Vision Impairment". this essentially means her eyes work fine, but the translation of what she is seeing is being lost somewhere in the transmission to her brain. the good news is, there is the possibility of improvement in this area. essentially, she will need to learn a new way of seeing. so she has vision therapy and will be going back to the opthamologist in four months to determine if there has been improvement. we are hopeful that there will be.

next up is hearing. she hasn't passed any of the three hearing tests she's had and isn't showing us any signs that she hears. she doesn't startle at loud noises or look towards the direction of noises. however, i feel pretty confident that she "hears" me. she seems to like when i sing to her. . .which actually might be a sign that she can't hear. ha! i also think she enjoys having music on. we are constantly playing an iPod in her nursery. i've discovered we will soon need to "clean up" her playlist as some of the songs that play aren't so age appropriate. we probably don't want to be teaching her those kinds of words. strangely, we've found that she has an affinity for Rhianna's song "Umbrella". not sure how this song got on my iPod. . .or why the daughter of two indie rockers would be so keen to a mainstream pop song. but it does have a good beat that we both like to bop along to.

smiles. oh. . .the evasive smile. i'm dying a slow death waiting for her to smile. somehow i believe that this first official purposeful smile will make everything alright. of course i know that it won't solve everything. but i do think it will bring me a lot of happiness and a sense of peace in knowing that she can feel happiness and express it. so far she smiles in her sleep. sometimes her eyes are even half open and i wonder if she is toying with me. even when i know this smile is yet to be intentional, it still makes me smile right back. and i know when she finally flashes that first real grin i will feel an overwhelming sense of joy. so for that day i will continue to wait.

head control is another thing we've been working on. i know this will take much practice and patience. to help us with our goal, we've implemented a stringent "tummy time bootcamp" schedule. at least four times a day, she is forced to submit to the dreaded tummy time position for 5 minutes at a time. she screams bloody murder and it breaks my heart. but i know that it's a necessary evil to help her develop. and i hope that not only will this help her head and neck control, but that eventually she can actually learn to relax and enjoy being on her tummy.

so although she's behind in her development, which was to be expected, we've also seen great strides in our Emmy. the changes we see may seem subtle to others, but we know they are leaps and bounds for her. she's gone from screaming inconsolably for hours on end, to screaming quite a bit, but with the ability to soothe her fairly quickly most of the time. she loves to be held and swung and held. she won't allow you to sit down on the job, but at least there is SOMETHING you can do. she also is having much more time where she is awake and alert and not screaming. don't get me wrong, she still sleeps A LOT. but little be little we are seeing her come around. i already mentioned her vision progress. and finally, her feeding therapy is going well as well. she's gone from sucking only 5-10 times in a row to up to 30-40 times in a row. she has a LONG way to go. her swallow is still not strong. but we are working on it every day. along these same lines, her gag and coughing reflexes have also gotten stronger, which is a good sign of improvement. it also means she is better capable of protecting her airway and not at as high of a risk for choking.

so with that, i'll leave you with some fabulous new photos which i believe are proof positive of how much more alert our girl has become.

our little glam girl, lounging by the pool "Hollywood" style

"mom, i'm bored. . ."

bright eyed and bushy tailed

conked out

the yawns never get old. . .just too cute!

post yawn pucker

i mean really. . .could this face be any more perfect?

darn hiccups

well this whole video thing has made me lazy. it's just too easy to capture a quick video, slap it up here and call it good. so here's another one featuring emerson and the darn hiccups.

splish splash

the going to the park video series was a big hit with our far away friends and relatives who don't get to see E in person. so by popular demand, here's a new video of our girl. this one features bath time with her nurse. enjoy!

happy father's day

we have had a wonderful father's day. it was simple. but it was special. it was adam's first father's day as a dad. last year we had just learned i was pregnant, so it had special meaning. this year we have our emmy in the world with us. last year i could only imagine what a good dad adam was going to be. i needed a lot of nurturing this time last year as i was terribly sick with morning (all day) sickness. adam was constantly running out to find things to either help me feel better or that i could possibly eat. mashed potatoes were a favorite as was ginger ale, saltine crackers and plain white toast. with four whole months of parenthood under our belts, i can now attest that adam is a better father than i could have even imagined. and being a great father has made him an even better husband. through all the trials and complications we've encountered he has only grown and stretched as a man. his strength, faith and support build me up and keep me going. and the love he oozes for our sweet emmy makes me love him even more. he is my perfect partner and he is the perfect dad for emmy. so with that, i say happy first father's day adam. and here's to a lifetime more in our future together.

emmy goes to the park

Please enjoy this nine-part docudrama miniseries featuring:
-rising young starlet "Emmy G"
-spunky furball "Daisy Mae Alligator"

With guest appearances by:
-firey rockstar dad
-severely-in-need-of-a-cut-and-color mom

the emmy bear

not much time for writing. our little emmy continues to progress. however, it is quite apparent as she gets older (she's 16 weeks as of this past saturday!) and begins missing milestones that she has a brain injury. she does not smile yet, except in her sleep. it is so cute when it flickers across her face and i can't wait for the day when she flashes a real one. she also has very low muscle tone. this means that while most babies are kicking their legs and reaching and grasping, she mostly just lays there. her neck and trunk are also very weak and we are working hard on tummy time (which she absolutely hates!) to get her little neck strong enough to hold her head. she's not doing much visually either, although we have seen some progress in her eyes and feel like she's starting to see more. she has an appointment with an opthamologist later this month. she also will see an ENT later this month about her ears, which we were told have fluid, which could be affecting her hearing. only four months in and she's already seen four neurologists, two urologists, two pediatricians, many neonatologists, and a pediatric surgeon. she has occupational therapy on tuesdays, developmental therapy on wednesdays and feeding therapy on thursdays. she will soon add physical therapy and vision therapy to her weekly appointments. it's not what we signed up for, but it's what we do for our little angel. and once again, here is the sweet face that keeps us going.