Thursday, December 29, 2011

there are lines in hanover!?

we took advantage of ryan's school holiday break and headed out for a date night. we decided to see sherlock holmes ii and left in plenty of time to drive a mile down the street to the movie theater. the roads were basically ice, so it took us probably 7 minutes instead of 5. 

when we arrived "downtown" there wasn't a parking spot to be found, which is strange for a wednesday night, but strange in general for hanover. there are no lines anywhere here! ever! i usually don't have to wait for anything and rarely have a hard time finding parking.   so, i ran into the theater {okay, i tip-toed really was seriously icy} while ryan parked the car. 

i ended up purchasing what i didn't know at the time were the very last two tickets for the movie. and when you purchase the last two tickets...and your husband is still parking the car minutes before the previews will be sitting in the front row. 

and after two hours of sitting in the front row, your necks might possibly be stuck like this for a very long time. 
{ryan is totally looking the wrong way. the screen was to our RIGHT! but do you like his new christmas sweater?}

even with our stellar seats, the show and the company were great. 
and so was the gelato we had afterward. mmm...pistachio.

Tuesday, December 27, 2011

spreading christmas cheer, one four year old at a time

we had lofty goals of doing tons of christmas-ey activities while ryan and leah had a break from school. instead we sat around home doing nothing. and let's be honest: we were all just fine with that. 

we did, however, venture out to the joseph smith birthplace memorial, which is about 25 minutes from our house. they had it beautifully lit up with lights. 

first we jumped into part of an information session about joseph's parents that was pretty interesting. leah didn't think so. 
then we went outside to see the live animals they had set up. leah was not entertained. 
then we tried to get a family picture. leah was not enthused. 
then we went on a walk. leah would have none of it. 
ryan and i, however, enjoyed ourselves. well, maybe just i did since ryan was busy wrangling leah. the lights were beautiful - i especially loved the light post they wrapped to represent the star that shone as a sign of Christ's birth - 
and it was nice to walk around all bundled up on a cold, quiet {except for leah} night.
i'm not sure why we don't go on family outings more often???

Monday, December 26, 2011

christmas day

as i mentioned earlier, christmas day 2011 was a hit. i might possibly put it down in the record books as the best christmas for the layton family trio thus far. leah slept in and woke up happy, which made me and ryan happy. then we took the annual picture on the stairs. wait...i mean our first-ever picture on the stairs because this is the first time we've had stairs! 

leah wasn't a fan. 
she was a fan of the virtual yule log.
and rapunzel. 
and her new apron {that actually fits and matches mom's!}. 
and her new legit african bongo drum. she's seriously good. but we seriously got no pictures of it! she was even interested in helping to unwrap some presents this year which was an added, unexpected bonus.

and apparently ryan was the official photographer of christmas day because there are also no pictures of him??

but best of all was finally seeing the contents of what we lovingly referred to as "the gender box." hooray for girls! 

we got all gussied up for church {and snapped a quick 19 week shot of my awkward belly} and were off. 
even our toenails got dressed up. 
ryan had leah duty during church while i performed in some different musical numbers - a women's a capella octet, piano accompanist for an amazing soprano singing an excerpt from the messiah {seriously, i did NOT practice enough for that one!}, and a piano duet accompaniment for some congregational hymns. i went in knowing i was going to play two and ended up playing a third on the fly, which added some hilarity to my meeting. the music was a wonderful addition to a really great meeting about Christ - a perfect way to spend a christmas afternoon.

we ended the day eating delicious soup and bread bowls and a yummy pumpkin ice cream pie with an incredible family from our church. 

yup. it was a good day.

Sunday, December 25, 2011

it's a....


so excited for leah's little sister to join our family in may!!

just hope her hearing wasn't fully developed when ryan referred to her as 
the second cutest little girl in the world.

merry christmas 2011

all in all, christmas 2011 was muuuuuuuuuuuuch better than thanksgiving 2011. like a bazillion times better. three cheers for that. pics will come soon. until then, our annual christmas card:

{still can't believe brittani got miss ribbons to look AND smile a regular smile at the same time...without hands in her mouth. although, can you tell we're holding one and smashing the other between her and ryan? whatever works...}

christmas eve

our christmas eve this year was quiet and peaceful - exactly as we wished. we made our traditional christmas eve dinner. this year it was chicken cordon bleu, rolls, peas and juice. not an overwhelming amount of food - but perfect for a special night. and we licked our plates clean. 
michelle dropped off our surprise package to be opened the next morning. if you think her face says, "i know something you don't know," you're spot on. michelle took the envelope with the ultrasound picture of whether #2 is a boy or a girl, and filled this giant box with the appropriate colored balloons. at this point in time, only the ultrasound tech, the balloon artist and michelle knew what we were dying to know! 
we opened up one gift each. leah and i got matching jammies. i didn't really need new jammies, but when i saw these bottoms that matched the footed pajamas i had already purchased for leah, i just couldn't resist. ryan also didn't need new pajamas, and i figured he wouldn't appreciate a surprise pair of pink polka-dot ones, so we got him some comfy slippers, which are conveniently not pictured. 
we snapped a few photos 
 {including our leah sandwich, of course}, 
tucked leah into her bed {where it took her for-ev-er to fall asleep - i think someone was excited!}, then ryan and i watched it's a wonderful life. we helped santa with a few last-minute things before heading to bed ourselves at a ridiculously decent hour. i was quite proud.
i have to admit that i loved being lazy this season, sitting on my couch watching tv with the tree lit up. lest you think we went crazy overboard on presents this year , our tree is actually sitting on a giant box covered in green and white striped fabric, and the presents are resting on top of that. we were, however, very blessed and actually ended up with more than i initially thought we would thanks to parents and siblings. it was a perfect night.

Friday, December 23, 2011

dear santa, volume 5

we didn't get a chance to visit the jolly old man in person this year, 
but leah still wrote her letter. check it out here

christmas adam

for as long as i can remember, we've referred to december 23rd as christmas adam in our house. if i remember right, it was my mom who coined the phrase in our house and when we were younger, we thought it was downright hilarious and witty. 

i've used it in regular conversation throughout the years and most people just think i'm crazy. that may be true, but not because i call december 23rd christmas adam. adam came before eve and december 23rd comes just before december 24th, christmas eve. 

and because i thought it would be fun to actually have an activity planned for the day before all the festivities really begin, we decided to make christmas adam cookies and share them with some friends. 
leah was our little helper. she was quite proficient at rolling the dough balls in our holiday-colored sugar and couldn't have looked cuter in her rolled up, over-sized apron. 
i'm hoping a tradition has been born.

Friday, December 16, 2011

blessings from boston

thursday, december 15th, i got a phone call. it was from the rett clinic in boston. 

the same clinic i have been anxiously waiting to take leah to for four months. the same clinic where i have called and left countless messages for an appointment. the same clinic where i have spoken to three different people all saying they would call me back - or have so-and-so call me back - to make said appointment. and then i wait. and wait. and wait. so the second week of december, when i finally called and actually spoke to someone and was actually able to make an appointment, i was half ecstatic. the reason i was only half ecstatic was because the appointment wouldn't be until february. three months away. seven months after we moved and almost a year after her last rett-specific appointment. not good. i asked to be put on the waiting list if someone canceled, but wasn't holding my breath as the doctor we needed to see was on holiday out of the country and his schedule would obviously be jam-packed when he returned.

so, when i got a phone call on december 15th telling me there was a cancellation for the next morning at 11 am and could we come?, we all know the answer was a resounding yes. leah skipped school {she's not nearly as risk-averse as her mother was when in school} and we drove two hours to boston just the two of us. i would have invited ryan, but he was frolicking in the warm california sunshine all week...not wearing a coat...and sending me pictures of sunsets on the beach. nice.

since leah has health insurance that is restricted by state, i knew i needed to get cross-border permission. i was assured this wouldn't be a problem since there is no rett clinic in new hampshire, so we have to go out of state, but hadn't called yet as our appointment was three months away. i got the phone call at 3:00 pm and spent the next two hours making phone call after phone call to people who thought i was crazy and wondered why i was calling them. i should be calling this group or that doctor or this insurance company or that  hospital or this person, didn't i know. aaaaaaaaaaaaaaand, all the phone numbers listed on my two insurance cards apparently don't work when calling from a cell phone? so i had to find other phone numbers. after a lot of tears, and a little bit of yelling {most of it directed at no one but the air, but some of it at leah, sadly, after which i locked myself in a room while she watched cartoons}, around 4:50, i finally got on the phone with a friendly girl named amanda who works in ohio at the company that manages my insurance company. she was the most helpful person in the universe. and kind to boot. she was the only person who didn't make me cry after hanging up the phone. thank you, amanda from ohio. really, truly, thank you.

the next morning, we were out the door by 8:00, parked {in the wrong parking garage} by 10:20 and in the waiting room in the neurology department of children's hospital boston by 10:45, ready to meet with dr. omar khwaja, the director of the rett syndrome program there.

leah got her weight and height checked and she's still over 30 lbs. actually teetering around 32. woot woot! and then dr. khwaja called us back. 

the first thing he said was, "so, what brings you here?" my first reaction was to say, "my daughter has rett syndrome, you dummy." but i resisted and, after remembering that he probably sees more than just rett syndrome patients and has a lot on his plate, i explained our situation. he actually remembered hearing about a four year old girl moving from california to new hampshire and was excited to finally meet her. 

sadly, he didn't send us home with a pill or cream that would cure rett syndrome {high hopes, i know}, but after asking lots of questions about her background and current situation {as every girl with rett syndrome is so, so different}, he actually sent me home with three great pieces of information - one more valuable than i could have imagined. 

first, we chatted about her seizures, which honestly was the main thing on my mind and the one symptom i really wanted to figure out and try to control. we chatted about different medications and the options we had - what was working, what wasn't. and finally settled on a solution that will hopefully work for now. 

second, there is an AAC {augmentative and alternative communication} specialist who works with the girls who come to the boston clinic and helps them get the devices or services they might need to help them. this person obviously knows the specific needs of those with rett syndrome as well as the ins and outs of insurance and trials and all that other baggage that comes along with getting those services or devices. and we can take part. hooray!

third, as we were leaving the office, dr. khwaja said, "leah looks great. she really is quite a healthy little girl and is really thriving. i can tell you are working hard to do the things you think are best for her and she just looks great" {or something to that effect}.
i was a bit taken aback, but kind of wanted to cry. sometimes i get so lost in the overwhelming day-to-day of taking care of a little girl who can't do the things other little girls can do, that i forget she really is "improving" and "thriving." she seems to truly love life and i know for a fact that i truly love her and do try to do what i think is best for her. it was really nice to hear those simple words from someone who sees others with similar challenges and battles on a daily basis. 
we'll be back in six months to follow up with dr. khwaja about our hopefully still- happy, healthy, thriving miss ribbons.

during the appointment, we realized leah was due for another ekg to check for long qt syndrome as her last one was one year ago. he made a simple call to the fourth floor cardiac unit and made an appointment for us right on the spot. seriously? when does that ever happen?! we checked in, waited for maybe 5 minutes and then went back to get an ekg with nurse leah. yup, miss ribbons thought it was pretty cool that she and the nurse had the same name. nurse leah was just as awesome as patient leah and had us in and out, painlessly, in under 15 minutes. 
we headed home via trader joes {of course} and a pit stop at a hotel parking lot just off the freeway for me to take a cat nap as i was going to fall asleep on the road. we made it home just after 5:00. it was a loooooooooooooooong day, but one we'd been waiting for for a loooooooooooooooong time.

Thursday, December 15, 2011

beLEAF in a cure and a few other things

i try not to make rett syndrome my life, but let's be honest: it kind of is. christmas is an especially interesting time of year as my emotions are all over the place with what could be and what really is with regards to holiday celebrations, gift giving for leah and my own holiday wishes.

if is could wish for anything, it would be a cure for rett syndrome. obviously. 

but then i feel guilty because i hate fundraising. really, truly, i do. i used to hate it in elementary school when we had to sell candy bars and wrapping paper. i hated it in high school when i had to sell happenings books and christmas wreaths for my choir trips. and i hate it now. 

but...when it's something i truly believe in, i'm willing. so, i have for you two great ways to help make a christmas wish come true. 

beLEAF in a cure earrings. 
you can find them in my etsy shop and all proceeds will benefit the International Rett Syndrome Foundation on behalf of miss ribbons herself. 

if you're in the Boise, Idaho area, you do not want to miss an amazing benefit concert put on by Mindy Gledhill for another sweet little girl named brynn. my dear friend cristi {who i've known for years and years} is an amazing photographer, psychologist, mother and friend. she organized this incredible benefit concert just for brynn and her family, after realizing the profound effect music can have on our girls.

to purchase tickets for the concert, go HERE

to read about brynn in the newspaper, go HERE

and to read about brynn and the concert from cristi herself, go HERE.

a huge thanks to cristi, mindy gledhill and brynn and her family for believing in a cure!

Saturday, December 3, 2011

winter gift and craft fair

together with some friends from my church and tuck, i helped throw a little craft boutique at our community center this year. we spent weeks and weeks preparing our goods: all kinds of jewelry, christmas ornaments, scarves, hand crocheted goods, hand made cards, delectable goodies, tile coasters and more. 
{ashley, michelle, maren, brittani, latasha, brittany, missy}

my kitchen table {and entire first floor} might not have seen the light of day for a few weeks...

...but it was a lot of fun! and i wish i had a picture of the entire room. it really transformed beautifully!

i even got to decorate my table with the lovely green striped fabric from IKEA that i've been meaning to turn into a tablecloth now for a few years. 

i hope it was worth it for all the other lovely ladies - if not monetarily then at least in other ways. i'm hoping we can recreate the madness...and year.

{thanks to brittani for documenting...}

live nativity

each year, the hanover ward {our local church congregation} has the primary kids {ages 3-12} do a live nativity at the annual christmas party. this year, someone had the brilliant idea to take pictures of the entire nativity story - costumes and all - and set it to words and music and then play the video at the annual christmas party. i think it turned out lovely. 

leah, along with all the other 3-4 year olds, was cast as a sheep. eat your hearts out? yes. but i was the one charged with capturing them on my trusty nikon. those shepherds tried their darndest to keep watch over this particular flock, but it was harder than it looked. especially for poor shepherd alex, who begged his mom for permission to keep watch over sheep leah. he was darling with her, but she proved to be especially tricky. 

here's a glimpse of alex and leah {why is signing time in my head now?}:

here's the entire crew {click to enlarge and see the serious creativity going on with some of these costumes!}: 

if you want to spot her in the video, look for the sheep who looks like she lost the battle during hunting season. that's my girl. 

seriously, though, darling video. to watch, click the link below.

o dartmouth tree, o dartmouth tree

this evening marked the annual lighting of the dartmouth tree on the green. it's no rockefeller plaza tree, but let's be honest: hanover, new hampshire is to new york city as the dartmouth green is to rockefeller center. it's actually quite the sight when driving through hanover in the dark {which is any time after 4:00pm, if you were wondering}.
they had hot chocolate and cookies for all. leah was on hyper drive and it was all ryan could do to keep the hot chocolate from spilling out of its foam cup and scalding his hand. that girl is wiggly. look at those pigtails fly! 

we attempted a family portrait, but these were the best we got. 

i think this was the best photo of the night. for a live {black and white} look at the tree, check out the webcam.
a fun - and cold - night out to usher in the holiday season.

Sunday, November 27, 2011

nyc thanksgiving style

the day after thanksgiving, we headed to nyc for a quick weekend getaway. a friend i worked with at byu was kind enough to let us stay in her amazing apartment while she was away visiting family for thanksgiving. it was amazing! we loved everything about her apartment and her hospitality. 
miss ribbons loved finding new corners to hang out in. 
and she loved times square. 

but she didn't love the manhattan temple? we'll have to have a chat...
{she did love the juice box and raisins the temple worker gave her, though.}

ryan loved the dj at h&m - reliving his high school glory days as mix master ryan {he and miss ribbons sat at the front of the store for probably an hour listening to this guy while i shopped!}. 

but he didn't love the realization that his hard-earned money is paying for courses in capital markets, accounting and finance this year rather than a scrumptious meal at ruth's chris. 

he did, however, love his crab that was purchased with a gift certificate we have patiently waited to use. 

leah was amazingly patient on this trip. she slept in the car. she slept at night {mostly} and she even slept in the stroller while we were out and about. she fell asleep in my arms at dinner and nearly dozed off on the subway once. it was kind of incredible. and we kind of loved it. 

because she was such a trooper, we decided to brave the thanksgiving weekend crowds in the time's square disney store and oh was it worth it. we could not have wiped the smile off miss ribbons' face if we tried. she stared - and i mean stared - at the rapunzel doll and lots of other toys. i kind of caught a glimpse of what leah might be like without that blasted genetic mutation. after all, lots of other kids were staring, speechless at the rows and rows of displays as well. 

macy's was all aglow and we had fun maneuvering our way through the crowds with a stroller. 
we shopped on canal street {where ryan bumped into an elderly chinese lady with the stroller and he got an he gave her an earful back...who knew a white guy could speak chinese!?}, ate lots of pizza, caught a glimpse of the tree in rockefeller plaza {set up, but not lit when we went} and spent quiet evenings at "home". 
  {loved these angels in rockefeller plaza.}
 {miss ribbons and her dad by a big apple in the big apple.}

i drove most of the way both ways so ryan could study. and this ended up being super awesome because i got to listen to hours and hours of christmas music. a truly fantastic weekend.