updates galore

right now i'm sitting in Emmy's room, but she's not here. her dad swooped in and took her away. it's a beautiful day and he took her out back for a little sunshine. i can hear him talking to her. it's a wonderful sound. i should be utilizing this time to work. but alas, i am taken by hearing them and how could i possibly concentrate under these circumstances. besides, i'm long overdue for a blog update anyway!

the days at the palm ranch have been flying by. if you could see our schedule, i'm sure you would gasp aloud. each day is packed to the gills with therapies, doctor appointments, work meetings, travel, and general keeping it all together.

emmy continues to grow. she's quickly approaching 15 pounds and has gotten quite tall as well. she's swiftly descending beyond six month sized clothes into nine and 12 month sizes! her hair is growing and a barrette is her signature look. . .right up front in the middle with sprouts of hair coming out of the top. her dad was a little hesitant of the style, but we've convinced him it's her look. she has a bow to match every outfit.

a couple of weeks back, we ventured into a whole new realm. . .the blenderized diet. instead of giving her manufactured formula through her g-tube, we are now blending real foods! i've been anxious to do this for some time, and after a visit with a dietician and a little guidance, we are on our way. it's a bit more work and preparation, but it feels so good to be doing something for her. finally. . .something i really can do for her. the blend includes a meat (salmon, chicken or turkey), veggies (we've used butternut squash, sweet potato, spinach, broccoli and peas), fruit (we've used blueberries, mangoes, apples and bananas), avocado, oil (we've used coconut and flax), whole grain rice cereal and a milk of some sort (we've been using almond milk). i mix up a blend each morning, changing up the ingredients slightly and that feeds her five meals throughout the day. then she gets a bit of formula still overnight. but the goal will be to get rid of that pesky overnight feeding and omit the yucky formula altogether. she's already doing so much better. . .less vomiting and reflux. hooray!

she's also recently tried swimming, which she seems to enjoy. we have an organized swim group every wed afternoon, so when we can fit it in the schedule and she's feeling well, we go. so far we've only gotten to go once.


so many more updates, but i must get back to work. . .that and getting my new iphone up and running. yes, it's true, i finally bit the bullet and gave up on my old blackberry.

go emmy go!

more smiles

emmy's smiles continue to come more frequently and more purposefully and we couldn't be happier. it's amazing how one little smile can turn your mood upside down, in a good way! and yesterday, we even witnessed her very first giggle. we haven't captured that on video yet, but in the interim, here are some smiles for your viewing pleasure.



in other news, i haven't been posting much here because Emmy's now got her very own Facebook page "An Appeal for Emmy". it started as a fundraising page for her, but has evolved into being a bit more comprehensive. it's an easy place to share photos, etc. here are a few pictures that have gone up there recently.

Emmy's first birthday "party"

I think she liked all of her presents

some playtime smiles

just looking totally adorable without even trying

and one more video of her enjoying a red balloon.

An Appeal for Emmy

With Emmy's 1st B-day just a few weeks away, we're kicking off a fundraiser for her on Facebook. Please "like" her Facebook page to keep up with the latest, donate if you can and "share" with your networks. Thank you!

An Appeal for Emmy: Emmy went without oxygen at birth. The result was a traumatic brain injury that has left her with many challenges. But we fight for her every day and we hope you will join

a new year, another therapy

we haven't had the best beginning to the new year. in fact, it's been downright awful, but starting to look up. coming back from Christmas vacation Adam started to feel a bit under the weather. this was scary because some family members had been sick at Christmas and we were scared to death of getting Emmy sick. so when Adam started showing signs, we prayed Emmy (and I) had evaded it. but Saturday morning, I woke up with a sore throat and knew it was coming on strong. and if I was getting it, I knew it would be a miracle for Emmy not to.

we had our lovely nurse Vanessa on Saturday, which isn't usually the case, but she was making up some hours since we had been gone for a week. she was closely monitoring Emmy's breathing, feeding and temperature. she seemed to be a bit crankier than normal and also seemed to be more congested.

by about noon, her breathing was getting more labored and the monitor that tells us how much oxygen she is getting was showing she was not getting enough. so we started giving her some supplemental oxygen. (we have only had the pulse-ox monitor and oxygen at home for a few weeks, but it came in handy!)

just a few hours later, she started spiking a fever. but we were managing everything ok with our mini home hospital. . .until all of a sudden, we weren't. it took only minutes for Emmy to go from good to bad. . .she couldn't get a breath and her oxygen saturation number continued to decrease even as we increased the oxygen she was getting. she started to go limp, stop crying and losing color. so we jumped into the car and drove as fast as possible to the nearest hospital. . .with no carseat and me banging on her back all the way trying to get her to breathe. thankfully, within minutes they had a team of doctors working on her and breathing life back into her.

and there we stayed to ring in the New Year and several subsequent days. we were released yesterday and are so happy to be home. she is still requiring oxygen supplementation, breathing treatments every four hours around the clock and some extra meds, but home is so much better. it's such a shame that a silly little cold can land our sweet girl a week in the hospital!

before that trip to the hospital, we started a brand new therapy (to us) that we are really excited about. it's called Cuevas Medek Exercise (CME) and Emmy will be doing sessions once a week. . .or twice a week if we can find the time and the funds! it's supposed to really help build trunk and neck strength to get Emmy closer to being able to hold her head up, sit up, etc. here are a few videos from her first session that was really more of an evaluation. we can't wait until we can go again!

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.