The Aye Team

Fun Fun Weekend

2011-10-02T21:07:00.000-07:00

We started our Saturday morning with some tennis. I HATE sports. Well, maybe I shouldn't say hate, more like I've never been introduced to sports as a child. I actually had fun (!) and so did Orion. Here he is pooped out after lots of ball chasing.

After tennis, we headed to one of our favorite restaurants Calafia. It is owned by the original Google chef, Charlie, so you know the food is good.

Orion got a tofu scramble with spinach and mushrooms plus hash browns and toast. He requested tofu scramble. He only ate the hash browns and toast. This kid hates bread!! I think he liked the super crunchy texture.

This picture of him makes him look so skinny!! He lost some weight after the couple of colds he was battling.

After lunch we headed to a playdate for all the preschool kids in his class. I was too busy meeting all the parents I did not take any pics.

In the evening, we went to Orion's friend's school that was holding a carnival. He played a few games, decorated a pumpkin, and did spin art. Love kids arts and crafts!

Growing Up In A Week

2011-09-27T15:27:00.000-07:00

Orion's gone from being so shy and having separation anxiety during his first weeks of preschool to saying "I love you, teacher" and giving her a kiss :)

He is FINALLY sleeping in his own bed!!!!!!!! It only took 4.5 years but we did it. He has one of those ikea reversible beds and promised he'd sleep in it if we put the bunk on top. I cushioned it with about a billion pillows just in case. Even though we will find him wandering into our bed at 3am, I am still so happy I don't have little feet kicking me all night long. The only problem I have now is that I'm too anxious to know if he is ok in his bed. I feel like a worry-wort all night. Then I finally end up falling into a deep sleep and don't wake up to change his diapers. His clothes and bed are usually soaked by the middle of the night (bad mommy).

Our forward-facing boy :( We tried our best to keep him rear-facing as long as possible. At 37 inches tall and 30 pounds, he was finally reaching the maximum height on his Britax Boulevard. I even tried to find a taller carseat to keep him rear-facing, but no such luck. So here he is with a big grin on his face sitting in his forward-facing seat for the first time :)

Getting the old infant carseat out to see how it fit's in our car. Orion had to make sure to try it out first :) Yup, he's gettin big!

And this is what he loves to do all day everyday!

Past and Passed (Out)

2011-09-22T17:18:00.000-07:00

I was just reading some old blog posts while Orion was playing on his Leapster. I can hear the music of one of the games, and i gave him a time limit of 10 minutes. I am sitting on the couch with the laptop in front of me, and when I move my laptop to look over at him, he's totally passed out on the ground! He is worn out from this cold he has....

I'm putting in more effort to our blog and not relying on social sites so much to post updates. With the new baby coming along, it's nice to see the growth and change over time in one place and we can look back and read about it.

As I was saying, I was reading old posts. I went back a year and read a post I wrote on Sept 16 2010. It was after a doctor visit and how our pediatrician said it would take Orion about 1.5 years to get to that minimum weight of 35-40 pounds to be a candidate for heart surgery via cath. At the time he was 27 pounds. Well, it is now a year later and he is a solid 30 pounds. I guess this is going to take much longer. At least we know his heart is still doing good and hasn't had any new changes in the last year. Maybe he will still have another year to get bigger and not need surgery yet. Maybe two :)

Tonight is back to school night but seeing how Orion is passed out on our living room floor, I'm not sure how this is going to pan out. Hopefully one of us will be able to make it there.

Surprise!

2011-09-22T11:08:00.000-07:00

I had my anatomy scan/level 2 ultrasound and all looks great. Everything measured perfectly, and baby's got a good-lookin spine. BUT they could not tell if it was a boy or a girl! Baby was curled up so tightly and they could not get a good look. My first ultrasound was at 14 weeks and was deemed a boy, but I thought it was a bit early to tell so I didn't find myself 100% sure about it. Today, the technician thought it was a girl, then a boy, then the attending couldn't find anything boy-like at all. So we shall see!

Hating school less and less...

2011-09-19T22:00:00.000-07:00

Orion's has been having trouble starting preschool. One day was even kicking and screaming on the floor of the classroom. Once here's there, after 15min, he's OK. Each day is getting better, today was only 9 mins of crying, but it's been three weeks. When he comes home he's so happy, singing the songs and telling us about his day, you would have never thought he hated going.

We hope this will pass... like the time when he would wake up at 1-3am every-night scoot (he couldn't walk yet) to the kitchen and open the fridge and just sit there crying at the fridge, good times... or the time when we tried to make him sleep in his crib and he just banged his face against the crib even after he was all bleeding... yeah, determined kid... actually we are still working on getting him to sleep in his own bed :/

But overall he's growing up fast, wants to be independent (and have his way), and still obsessed with astronomy. We think he might be like his grandpa and become a physicist. :)

Baby Time

2011-09-19T21:51:00.002-07:00

Orion's going to have a baby brother in February. He is so excited!

Baby's heart has already checked out awesomely perfect and everything is going smoothly :)

Soccer

2011-03-20T10:22:00.000-07:00

I found the most perfect soccer program for Orion this year. It is an inclusion program for typical and special needs kids, and it is all provided by volunteers. It is for kids age 5-18, and there is a "preschool" group for the young ones. Orion is in the age 2-4 group since the 4-6 group seemed to be more active. Each session is an hour long, and he got the hang of things very quickly! He was shy in the beginning, but wanted to take part in all the drills once he felt comfortable.

My absolute favorite thing about this group is that there are three coaches plus four volunteers (I think they were in high school) for a group of ten kids! Each child got the attention they needed to get involved in the game. Orion was running a bit behind the rest of the kids, but there was always someone with him to cheer him on and guide him. They also understand when he would get tired and let him just hang out and watch the rest of the kids. Love that understanding!!

The kids were supposed to be in a circle kicking the ball to each other, but Orion hogged the ball and just wanted to make goals.

Aliens vs. humans. The aliens knock down cones.

Humans fix the cones.

Favorite drill: making goals.

More goals.

GOAL!

the start of 2011

2011-01-12T10:19:00.001-08:00

we got through the whole end of 2010 without any sicknesses, and of course we start the year with stomach flus and colds. orion is sick as a dog. with a stomach virus that has turned into a common cold with sneezes, runny nose, stuffiness, coughing, and sore throat, i truly forgot what it is like to have a sick kid! the grumpiness, whining, no sleep, no eating is a nice reminder about how sick he used to get in previous years and how what a great "healthy" season we have had so far. hopefully this won't take a toll on his body and he'll get through it quickly.

bo was lucky to be away in tahoe when we all got sick, so i'm also hoping he doesn't catch it now!

orion's additional supplements to his diet are not working. he has been the same exact weight since he first got weighed at the dietician's office. this cold isn't helping either! she said to be patient and give it time, so we will see. her goal is for him to gain 5g a day, i don't know when that's gonna start....

i have been busy doing a deep cleaning of our house, including donating a lot of things we don't need anymore. i think we are hoarders?! i like to save a lot of things that can be used for "art" and bo is an avid collector of anything vintage aka dumpster diving. we have accumulated a lot of things since moving up north 4 years ago. most of it we have not used, just saving for some special day (?). time to throw away. it's my fault for always moving to a bigger house, having room to bring home more stuff. good thing we don't have a garage; if we did it would totally look like my mother-in-law's.

time to go hang out on the couch with the sickie....

winter

2010-12-21T15:51:00.001-08:00

now that it is winter, it is time to stay indoors and avoid all the nasty germs out there. i have heard a lot of people getting stomach viruses, even overseas. it's definitely going around! so here i am today, researching preschool curriculum, in hopes of getting orion prepared for preschool.

today, he read a new word: FOX. i thought it was the coolest thing ever! he knows how to spell TEN and RED, but today he actually read the word FOX without a picture. i suppose the first words he read was YES and NO (phone app haha).

maybe we will try preschool next year. for now, we are just doing some homeschooling and he looooooooves worksheets. we can do those all day! bo and i are discussing public versus private school. it's just a preliminary thought, so who knows. it is crazy expensive. if anyone has advice on this subject, please feel free to pass on some info!

update on nutrition: we have seen the dietician twice. with a month in between the visits, he did not gain a single ounce :( so we are trying a supplement called duocal. it is a protein-free powder that you can mix into drinks/food. i add roughly 50 calories per drink 3x a day, so that's a good 150 extra. awesome. bo thinks he's fatter already and he seems to be getting heavier (we need a scale at home!).

we finally mailed our christmas cards out! first time i made it before christmas!! i didn't order enough, so i saved them for family, doctors, and for those who asked. i will know to order more next year!

happy holidays to everyone!

New Job, Mini Vacation, Dr Appts, Camp, Did I Miss Anything? (pictures to come)

2010-09-16T16:41:00.000-07:00

bo is now working here! sweet job!!!

before he started his first day there, we took a short vacation down the coast. since orion is not supposed to fly on a plane without oxygen (and it takes about 4 weeks to process an order for a supply) we decided on going to the monterey bay aquarium (he's been really into jellies). we planned on going to big sur for some hiking but the little mister fell asleep so we just did a drive-thru. we stopped in carmel-by-the-sea for dinner and a stroll through town. the next day we spent most of it at the aquarium, then on the way home, we stopped in santa cruz so i could go to harts fabrics. got some cool fabric for bo to work on a couple of chairs.

we headed home because orion had a dr. appt with his pediatrician. after reviewing his weight chart, we all came to the conclusion that at his rate of weight gain, it would take about 1.5 years to get to the minimum weight of 35-40 pounds (to be a candidate for his pulmonary valve repair via cath). sooooo we are really pushing the calories so he can hopefully get to 35 pounds in one year. it was pretty discouraging, especially after he lost one full pound because he was sick for two weeks. i'm really on the hunt for high-calorie recipes (that are healthy too). FYI he weighs 27 pounds right now.

we then had plans to spend the rest of the week off in san francisco, but i brought home a cold, then passed it on to orion. so we stayed home and bo took good care of us.

then we headed to camp! definitely a fun time for all three of us, and we hope to go again next year. click the photo below to see all the camp photos.

now we are home, healthy, and just getting back into our routine of things.

when i collect all the photos, i will (hopefully) post. bo took some really awesome pics at the aquarium!

heart update

2010-08-13T13:29:00.000-07:00

i know it's been a while since i've posted any updates. things have been busy (aren't they always?!). we had a couple of trips down to socal for some great family fun, including Anson and Lisa's wedding which was gorgeous! and just a couple of weeks after that we headed to the hollywood bowl with the newlyweds and kids in tow to see the bird and the bee and she & him. it was an awesome day for some family time outdoors.

we finally got an update on the conference with the cardiac team on orion's case. they want to wait until orion is bigger (35-40 pounds) so they can implant a new pulmonary valve for him via cardiac cath instead of open heart surgery. there is always the possibility that he would need the valve replaced before he reaches the minimum weight to become a candidate, so if it were an emergency, he would have the traditional through-the-chest surgery. i seriously need to fatten this kid up!!! it would be amazing to have all the repairs done through a cath, the recovery is so much easier and there are so many less risks. i have to go through my high fat/high calorie list of foods again....

on another note, orion has recently been doing a lot of hospital pretend play. i'm not sure if it's a good thing or not, but maybe this is his way of dealing with his fear. he has been talking about his echos (getting stickers put on, "glue" which is the ultrasound gel, then getting to watch a movie and having a lollipop). he's also been acting out blood draws on himself by putting on gloves, checking his veins (!) and then making the blood go up through a needle. and just the last few days, he has been preparing his meds, using markers as syringes and even using tiny pieces of toys to act as his aspirin pill. crazy??? i know we have been spending more time at the hospital the last few months, so it's probably fresher in his mind. it would be really nice to have his next surgery be a cath so it's not so traumatizing for him.

other than that, we have just been trying to settle into our new house. i probably spend too much time trying to organize repeatly, bo can never find anything haha. we have a nice long driveway to fit all our cars and a front yard area for orion to play basketball and ride his bike around. our house is enclosed by a tall fence, so it's nice to let orion play outside without the worry of going into the street (which is a major road). we also have mature fruit trees including loquats and lemons. there is a HUGE blackberry bush which are so amazingly sweet.

bo has his own office at home (phew!). so great to keep all of his things in his own room :) i am finally settled on the layout of orion's room (we must have moved things around several times already) so the next step is to paint and decorate. we have a nice large kitchen with zero counter space. everything is so old, i.e. meant for tiny people. we have a double oven but my baking sheets don't even fit in there! not a whole lot of cupboard space so we have things out all the time. no dishwasher, i wash dishes ALL DAY LONG. it never ends.

BUT we love our house. orion loves it. so much is near us within walking distance. we walk to the park nearly everyday, and when orion starts grade school, it's only a couple blocks away (not to mention the middle school and high school is on our street). i wouldn't mind living here forever :)

Orion's Heart

2010-05-10T10:59:00.001-07:00

orion had an echo and ekg today, and we got news we were not expecting at all. even though his echo and ekg were essentially the same, the fact that his two valves (the artificial pulmonary valve and tricuspid valve) have moderate to severe leakage (which has remained the same) PLUS having recently been getting more tired easily leads the cardiologist to believe there could be too much fluid in his heart and not enough fluid going out to provide oxygen. this brings us to having to repair these valves, which of course means another open-heart surgery. our first step is to try to reduce the fluid in his body and see if it changes anything. we are adding another dose of lasix his daily regimen. previously, he was on 3 doses, we brought it down to 2, but now we are going back to 3. we are testing this out for 3 weeks as well as getting some bloodwork done in a week to check his levels. if this does not help at all, we are going to have to talk about when surgery will be. but the doctor implied that orion will most definitely need a surgery sooner than we had planned (which was 5-10 years from when he had his artificial valve put in, march 2008).

i sure felt like things were normalizing around here!!! he seems so happy and really active and trying out new things. he's eating so well and really growing and developing how he should be. but the cardiologist doesn't want us to have to limit orion's physical activity, so this surgery will for sure help him to be a typical preschooler.

WE are just trying to absorb all the news right now. please feel free to post comments here or ask questions. it's been a while since we've been on this road!

memory lane

2010-04-26T11:34:00.001-07:00

orion and i went to packard the other day to pick up his meds. i go about once a month, but the last 6 months or so, visitors under age 16 have not been allowed in (due to swine flu). we usually just go in, grab our stuff, then head out. since they have lifted that rule, we were able to go check out the train, one of orion's favorite things to see there.

a lot of memories came back to me that day. i have walked those halls so many times in my pajamas and socks with backback in tow of a change of clothes and toiletries to get showered/dressed in the parents' lounge. or sitting outside in front of the water fountain in the garden just to get a breath of fresh air or to cry by myself. time is going by so fast and i know we will be doing this again in no time.

in march of 2008, we were told orion's artificial valve will last 5-10 years. two years have already gone by, so now we are down to 3-8 years. i can't imagine him being a big kid and going through surgery. i wonder what the technology will be like then.

orion has an echo in a few weeks. we always pray things have been unchanged. when we look at him now, we don't see any "problems". he still gets winded easily (about 30 minutes of active play) and when he is sick or cold, his face turns a little bluer. we haven't experienced anything serious like we did when he was an infant. these days, he is pretty much living the life of a typical preschooler :)

speaking of typical preschooler! i signed him up for a gymnastics class, thinking he would be ok by now. flu season is over, hopefully he will get something good out of a physical class. well, he got a cold from it! 30 minutes of being in an indoor gym and he's been sick for almost a week. he was doing pretty good the last few weeks being illness-free, but i guess he is just not ready for indoor group activities. we missed a trip to socal for a wedding since orion was sick, and we are also missing his second class of gymnastics. his pediatrician's gonna kill me :) she suggested i sign him up for an art or music class in the summer, i guess i did this too soon.

this also makes me question if he will be ready for preschool. WHO KNOWS. i wonder if i should just try it anyway? he has got to get his little body ready to tackle all the illnesses that will be in regular school right? i guess this is why a lot of parents homeschool their heart babies.

does anyone out there have suggestions on preparing their special needs kids for school???

Heart Homies

2010-04-20T17:39:00.000-07:00

This is a repost from Moriah's blog. Reading it brought back a lot of feelings of fear, hope, and love.

Recently, we've had several of our heart friends going through some trials or those who will be facing them soon (i.e. upcoming surgeries). I thought I would share who they are so that you could love on them, pray, and/or support them in any way you like...just as you have done for us. "Blog world" is such a special community, being a place where we can all come together and rally behind one another.

Reagan Williams - will be having major open heart surgery

Miracle Mason - just had a heart transplant but is now facing complications

Callie Carver - just had a major open heart surgery and is in recovery

Owen Simmons - will be listed for a heart transplant

Callie Stapp - will be having major open heart surgery

All these families (with the exception of Mason because he was there after us) are those who we spent time with at LPCH and the Ronald McDonald House. Each of these children have flown or driven with their families from across the country just to be at LPCH. They are away from family and friends, and the comfort of being close to home. We are praying for their strength, peace, and comfort as well as guidance and wisdom for their nurses and doctors in the CVICU...

Please feel free to list any more children in the comment section who might be in need of prayer and support right now too.

Lots of love,

the Nelsons

she & him

2010-04-13T15:39:00.000-07:00

orion and i can't stop listening to this album!!!

the best yet the worst

2010-04-13T12:51:00.000-07:00

i'm talking about where we live. our apt complex is made up of five separate buildings. i like our building the best because it is very small and has a nice large courtyard that makes you feel like you're living in a home with a front yard. it doesn't feel like a dorm hall and the majority of people that live in this building are families with young kids or working professionals (i.e. no noisy students!).

our building is the worst because its foundation is literally rotten. i've seen it. the wood is BLACK. mold. nasty. they started construction last year to investigate. they took out pieces of the wall to test materials. that itself was already noisy, messy, but bearable.

last month, we got a letter posted on our front door stating construction will begin in april and will last until august. residents will NOT have access to our building monday through friday, 830-430pm. it also states if we are staying home due to a medical condition and must exit our home at some point in the day, we would have to call the leasing office to schedule an appointment so a safe pathway can be made.

are you kidding me???!!!???!!!

it is so obvious that if it is so unsafe to be home during construction, they should not even be doing construction in the first place while there are tenants! there is really no option to move to another building since all the units are occupied, and with the price we are paying, it is not worth looking at moving since it is so expensive out there.

at the same time, it could be jeopardizing our health. think of all the dust, chemicals, toxins that will be airborne. obviously, if we stay home, i will be keeping all the windows shut, but that doesn't mean it will not enter our home. also consider the noise! how could orion ever nap? if we were to leave for the day, we'd have to leave before 830 and not come home until 430. where is he supposed to nap? am i supposed to pack breakfast, lunch, snacks, medicine, change of clothes, etc etc etc etc?

construction begins this monday. orion's gymnastics class also begins monday at 1030. bo's mom is coming that sunday before. monday is going to be an interesting day of wandering around town!

if the construction seems unbearable, we will consider moving. we had already started looking at renting a house after we received this letter, but we wanted to wait it out and see how bad this construction will be. let's hope it isn't miserable and orion and i will survive being stuck at home for the whole summer! i suppose i can look at this way: i can potty train him knowing we won't be going anywhere :)

bo's feeling better

2010-04-07T10:33:00.000-07:00

after seeing his rheumatologist and treating his sickness as a flare, he's gotten so much better. his CT scan came back clear and with his new dosage of meds, he is feeling back to normal. he says it was probably pleural effusion. but we are all glad he is feeling better and getting back to his normal routine. he is just following up with the doctor again in a month and hopefully he is back on track.

he has been pretty busy with work (what else is new?) but even more so since he does not have help with his regular freelance work. i've been looking into preschools for orion so when he is there, i can help out with work. we shall see....

orion won't stop growing!

2010-04-07T10:04:00.001-07:00

he is getting so tall. i just bought some new clothes for him because he is finally outgrowing his 3Ts! he's filling into his size 6 converses now, so i bought a couple new pairs of shoes to wear when he can't fit into his red cons anymore. i also bought a 4T hoodie and a couple 5T jackets. his current clothes are getting short on him, though the rest of him fit fine in it. he's growing!! we are so happy. last weight check he was at 25 lbs and something oz. the oz seem to fluctuate since he's been going through sickness spats, but overall at a good weight and almost making it on the charts!

he is still eating pretty good. though he is not a breakfast person, he is getting some good meals in him like brown rice, pastas, chicken, pork, tofu, and soups. he is definitely a fruit guy and goes through boxes of blueberries per sitting. i've just recently started buying the giant $10 box of berries just to make it through a few days! he is also trying new vegetables. he typically only eats it if it's all mixed up in soup, but lately he's been adventurous enough to try raw carrot sticks. he loves picking out vegetables at the market but isn't ready to try them when we get home. at least he is semi-interested :)

lately it's been really tough getting him to sit at the table and just have a meal! since he stopped sitting in a high chair about a year ago, he just runs all over the place and i'm following him around with a bowl and spoon trying to feed him. after months of this, it's really tiring and annoying to chase him around (though i am happy to see his little legs working and being so active)! but seriously, i can't really complain about anything, orion has been growing so well and learning so many new things and physically doing amazing. it's exactly what we like to see!

when worrying is not an option

2010-03-31T19:23:00.000-07:00

the last few days i've been thinking that the most important think in OUR lives is our health. without it, we can't enjoy quality time with friends/family, work can't be done, and overall it's draining on your mind and body.

because both bo and orion have such rare cases of health challenges, it is SO important to have the right medical team to look after them. i am so thankful to have the stanford team (and orion's pediatrician) watch over my family. i am truly thankful we made the sacrifice to move here because i've got two mostly healthy boys.

the other most important thing is our dedication to ourselves and our family. the only reason bo and orion are alive and (semi) well is because we had the initiative to search for what was the best for us and go after it. we cannot sit and watch our health dwindle away because we were waiting for the opportunity to come to us. we have to strive for that opportunity.

that said, i stayed up late last night trying to convince another heart mom (whom i have never met) to take her heart kid to the ER. after so much efforts of trying to explain to her the importance of her son needing to be seen by a doctor, i never heard back from her and stayed awake most of the night worrying about the 2-year old boy. he had been sick for more than a week with super-high fevers - i'm talking 104 F, rapid breathing, vomiting. we have had our share of orion emergencies, so i think after so much experience, i have learned when action needs to be made. i don't know why the mom was so hesitant to get her son seen. there are too many things that can go wrong so quickly, and there is no harm in going to the emergency room (that's why we have insurance right?). the boy had an appt with his pediatrician in the morning, and she wanted to just wait it out (even though she's been waiting it out for over a week and he was getting worse). she even mentioned that every time she sees the pediatrician, she has to remind him that her son has a CHD?! ok at that point, a parent should realize that is probably not the best doctor for your child. i can only do so much for someone else by offering advice, suggestions, and support. it is up to them to figure out how they want to deal with their situation.

this was a really great reminder for me, the importance of taking action and really pushing for what needs to be done, even when others don't have faith in you. it made me look back on the weeks after orion was born, when i stuck with my gut instincts even when the doctors did not believe what i was saying. upon bringing him in, they realized he was having congestive heart failure. if i had not listened to my own voice, he may not have survived.

on another note, i took bo to his rheumatologist on monday since i had it written on my calendar he was scheduled for march 29. checking in, his appt was actually for april 29, but considering his symptoms, they allowed him in on an urgent basis. woo hoo! i was happy to have him seen by her because he really has been so miserable coughing up blood and fevers (he saw two primary care physicians who chalked it up to just being irritation). i LOVE doctors that are aggressive and go straight to treatments and no guessing games. since it can either be an infection or lupus flare, she treated him for both - 10-day course of antibiotics plus doubled his dose of meds to take care of the flare and giving him a hardcore prescription for his cough. he is no longer coughing up blood but he does still have that cough and cannot sleep. at least he is getting better, even if it is a little bit each day.

update on that little boy, the doctor could not figure out what was wrong and only prescribed an antiobotic and sent him home. i also told her that she absolutely needs to contact his cardiologist, but i have not seen or heard any more updates. if it were me, i could not go home without some sort of diagnosis. but that's just me :)

on yet another note, orion has a stomach virus. he's in good spirits but isn't hungry much and has had 4 dirty diapers just today. at least he is drinking a lot, i hope it's gone by tomorrow. trying to look back on what he ate, i fed him a taco bell chicken quesadilla and he literally ate the entire thing - tortilla, chicken, cheese, all together! i was proud of him, but i can see maybe that's what is upsetting his system :( sorry orion! no more taco bell.

i was going to talk about our decision on preschool, but it's medicine time. i will post about that later.

sick going on 8 months now...

2010-03-22T23:13:00.000-07:00

for both bo and orion. since july 2009, they have both been hit with a slew of colds/flus, viruses, etc. i get sick in between, but nothing compared to when they get sick.

right now, orion is mostly over his cold. he's had this cough for weeks now, but the runny nose has stopped and he's in good spirits. bo on the other hand has had pneumonia for the past week, and now it seems it turned into the flu or maybe these flu symptoms are part of pneumonia. either way, his lupus seems worse which i'm sure affects how his body is fighting this infection. he spent the entire last week at home resting and semi-working, but for the most part slept through it. today was his first day back to the office, and he said he felt fine the whole day until he came home. severe coughing probably still congested. i just might take him to the dr again tomorrow.

we did have plans on going down to socal this weekend since it is gaia's first birthday and bo's dad's 65th birthday. we already decided we are going to stay home so bo's health doesn't get worse.

aside from bo, orion is really doing wonderfully. with the warmer weather, we've been able to play outside more, enjoying parks and just even hanging out in our courtyard. orion climbed a ladder at the park by himself which was a HUGE DEAL.

we also got him a little "skateboard" scooter which he was also great on alone. he's becoming more adventurous, woohoo!

i am touring preschools again, so far have not found the perfect place. if we were to enroll him, he would start this fall and would also have to be potty-trained by then (working on it!). we've gotten into a routine where i will give him his meds, he'll take a bath, then after the bath, sit on his potty and he will do his peepee business. it's been a few days in a row, and he now knows he's supposed to go sit down and pee! yes, very exciting news :) i'm now trying to add in another pee session in the morning, but he just hates it when i ask him. one step at a time....

we got orion his first fish last weekend, but poor sprinkles already died within a few days :( so sensitive to water!! i have to get the water tested and see. we may try a betta fish.

A FEW FUN RECENT PICS

daddy helping out on the tricycle

skateboard break

artiste!

chalk fun with johanna

i look gooooood!

HAPPY VALENTINE'S DAY!!!

2010-02-13T21:41:00.001-08:00

kool aid play doh

2010-02-08T13:18:00.001-08:00

just made some kool aid play doh with orion! he picked out kool aid colors at the store this morning and of course it's PINK! here's the recipe:
Kool-Aid Play Doh

2 1/2 cups of flour
1/2 cup salt
2 packages dry unsweetened Kool-Aid
2 cups boiling water
3 tablespoons oil

Mix the dry ingredients together in a bowl. Mix the liquids together and pour them over the dry ingredients. Stir the mixture until it forms a ball (this may take a while - keep stirring). As the mixture cools, it will become less sticky. After the mixture has cooled, take it out of the bowl and knead it until it is smooth.

be sure to get TWO packets of kool aid. i just grabbed one of each color, so we had to combine. we did strawberry and grape and it's a nice dark pink color. i'm still waiting for it to cool down so we can play with it.

tantrums continue

2010-01-27T13:42:00.001-08:00

orion's starting to come down from his meltdown as i type this. big fight to sit down and eat his lunch, he gave himself timeouts three times then finally promised to eat, only to come back to the table and want to go back down and play. i sent him to his room to nap (that is my usual tactic, no eat=no play=nap). he insisted on sleeping in our room (which he already did his timeouts in there) so it was yet another fight to go in his room. i'd say it's been almost an hour now!?

(and yes it's starting again!)

today is going to be an awesome day....

other than orion, i finally went grocery shopping today. it's been about a month since my mom came and did the shopping, then bo's mom came and did the shopping. we went to trader joes and they have all sorts of new products! lots of turkey variations of popular items like hot dogs and bacon. they did not have any ABC pastas in stock today, so orion picked out some colorful organic pastas :) he was also very sad the cashier did not give him any stickers. maybe that's why he's so miserable today....haha

as for the rest of our day...i think there will be a lot of cleaning (to de-stress myself!).

bo is doing much much better. he actually drove himself to his office today as a test run to see if he can make it through the day on his own. nice place to test himself out since he has help from his office mate and it's not his "day job" office which he plans to return to next week. the only thing i've really been helping him with the last few days is reminding him to sleep and rest and take the baths he needs to take so he can heal. i'm glad he can dress himself now, but i still have to help him put his socks on. i told him it's like he's pregnant now haha

orion is still crying. maybe if i take a nap i won't hear him anymore ;)

grandma withdrawal

2010-01-24T10:57:00.000-08:00

orion has been pretty cranky since bo's mom left. the last few weeks have been full of visitors. first my parents came, sung came right after. bo's mom arrived while sung was here, then everyone left. then bo had his surgery so his mom came again. now that she left yesterday, orion's showing his sadness by throwing tantrums, being feisty and rebellious, and pretty much being a brat! that means a lot of bribing is happening in this house :)

i am still trying to catch up on things, like our daily laundry and cooking. bo is getting better, except his incision seems to show redness. i've already called the surgeon and he said since he is already on antibiotics, there's no other route to go so as long as it doesn't get worse, bo is on the right track.

today is semone's 30th birthday (!!!) and we are so bummed we can't be with her to celebrate. HAPPY BIRTHDAY FROM NORCAL!!!

that just means my birthday is approaching in four days. i originally planned to spend the weekend in santa cruz - i found all the cafes i wanted to try and places to check out. i don't think bo will be up for travelling and walking around, so maybe we will do it another weekend. i honestly don't mind celebrating at home with just us! maybe i will be lazy and order in, watch a good movie and hang out with my boys. there's nothing better than that :)

some recent photos

2010-01-22T15:41:00.000-08:00

birthday fun with his twin, lizzie

enjoying the rain with bo's mom

he loves golf!

lazy golf is even better!

it's been so long...

2010-01-22T15:11:00.001-08:00

i think this is the longest i've gone without blogging. probably because most updates are posted on FB but that doesn't mean i should stop the aye team blog!!!

let's see, well the last place i left off was when orion came home after his cath (way back in august 09!). the last post doesn't count because that was just bo adding new songs to our playlist - even though he said he would post "later that day" hahaha.

in september, orion started school at a parent-participation preschool. it was a two-day per week program and i would participate in the classroom one of the days as well as attend night classes. after being there for a week, orion got sick from all the other snotty kids which kept him home for a week or so. he continued back at school only to catch another cold, missing school again, then returning into the classroom to catch the swine flu. after having the misery of dealing with that flu, multiple visits to his pediatrician and hospital, plus giving it to both me and bo, school was done. i pulled him out of the program, only to learn that some of the parents who were on the board were begging me to keep orion in school because he "needs" it. after their attempt to make him stay, it made me realize they were not understanding at all of orion's health and the importance of keeping him well. i don't plan on trying that school again next year.

so we spent september and october sick with the flu, then came thanksgiving and christmas which we celebrated in socal. bo had to work part of that christmas trip, so orion and i used that time to see all his aunties, AKA mommy's friends :)

now it is the new year, and it has started out rough with bo getting sick. he had an emergency surgery done immediately following a trip to ER because of so much pain. this was over the holiday weekend, so now he is home and recovering very well.

i always knew 2010 would be a poor year for bo's health. it's in his cards. really, it is. according to his "schedule" he has been hospitalized every four years: 1998, 2002, 2006, and now it's 2010. it always happens in the summer time, so i have been prepping ourselves for good health. i hope it just happened to come early this year and the rest of the year will be smooth sailing.

i should probably post some pics at some point, especially of orion's first disneyland trip right before christmas and being able to hang out with the croatian family :)

sianara for now, i will try to keep our blog updated regularly!

new songs uploaded!

2009-11-14T12:43:00.000-08:00

Its been a while, ill blog later today!

00 Edward Sharpe & The Magnetic Zeros - Janglin.mp3
00 Taken by Trees - My Boys.mp3
01 Chromeo - Tenderoni.mp3
01 Chromeo - momma's boy.mp3

Home!

2009-08-20T19:30:00.000-07:00

We were able to leave at 630. The bleeding had stopped after an hour of sitting up and moving around. When it was time to go, he refused to get in the car! He even said yes to wanting to go back to the hospital!! We had to bribe him with wow wow wubbzy YouTube videos then he was good to go :)

We are so happy to be home and so proud of how well he did today. This
was probably the easiest, quickest stay ever, it's weird!!! But we appreciate it!

It is dinner time, we still need to figure out what to have! Will post some updates tomorrow :)

Not quite ready to go yet

2009-08-20T16:19:00.001-07:00

There is still some bleeding, so we are going to wait and see if it
lessens. He's getting grumpier - the meds are wearing off, he's tired,
and wanting to be held (his leg has to stay straight). Hopefully the
bleeding will stop and we can go home today.

Looking good

2009-08-20T14:36:00.001-07:00

He's doing great so far. Had a little bleeding at the site (groin) but
it's looking better. If things continue to go well, we can leave at 4!

They did not need to go through the neck. The reading they received
through the groin was enough.

We also saw our cardiologist and he said Orion can stop taking
sildenafil (Viagra). Orion will be happy about that!

Cheese! (and French fries)

2009-08-20T13:54:00.001-07:00

Still pulling off picture face!

2009-08-20T13:28:00.000-07:00

All done!

2009-08-20T11:59:00.000-07:00

They just finished the cath. Everything went well. They are taking him
into the recovery room, and they asked us to continue waiting in the
waiting room to speak with dr. Peng. They are also going to see how he
does for the next four hours, if he's fine we can go home!!! Woohoo!
Hoping things go smoothly so he can relax at home. Yay! We miss our
little boy!!

Waiting

2009-08-20T08:52:00.001-07:00

I think I feel a lot better today. The last several days have been
full of worry, stress, and anxiety. Once we got to the hospital,
everything felt familiar again.

Orion got some "happy" medicine before getting carried off to the
room. He actually woke up at 4am ready to play! So after the med, he
was ready for a nap. We were so glad he conked out and had a good
memory of us before going in the room. I was able to place him on the
scanning bed and we watched them place the EKG and the gas mask.

That was at 8am. The MRI is up to 2 hours, then they take him straight
to the cath lab, which will be 2-4 hours. We will not be hearing from
anyone in between.

The cool new thing stanford didn't have before is a tracking board.
Each patient is assigned a number, and you can check the status of the
patient on the board (all computerized). This is great, we can watch
the progress that will show prep to OR to finishing to transport, etc.
What a great way to ease our minds :)

We are in the waiting room now. This is a brand new floor that we have
not seen. Super nice with flat screens, benches if you want to sit in
the garden, outlets for our computers and phones. But where did the
free coffee go? That's ok, I brought more than enough vinacafes to
hold us over :)

Bo is on his computer, and I brought my knitting and a book. Will post
updates as the day goes.

xoxo to all our family and friends. We couldn't do this without you.

Orion's Cath & MRI today

2009-08-20T05:29:00.000-07:00

Orion goes in for a cath AND MRI today. We been keeping it on the DL for really no apparent reason. I think we just didn't want to think about it until we had to, the anxiety is too much. It is almost a year since his last surgery, and thus they want to do a full work-up. The plan is to do two caths, one through his neck to check the Glenn, and one from his groin, to check his PValve. This will be his 8th cath and the first cath NOT done by Dr. Perry. :( I think that added to the anxiety that last day also (we just found out in his pre-op). But Dr. Peng comes form CH Boston, with a residency in John's Hopkins, so she must be good. We had a short taste of what the next week would be like, when Orion can home REALLY upset after his blood draw. Poor guys going to be even more upset after his cath, waking up all groggy and in a different place... off to the cath!

daddy & me soccer

2009-06-24T21:56:00.000-07:00

i signed orion up for his first sport!!!

he will start in july, and it is 8 sessions long, every saturday. each session is 30 minutes. i can't wait to see all the little kiddies running around in their uniforms kicking balls around :) it was under $100, i didn't think that was too bad. i got the confirmation email, stating that shin guards are required (seriously?! i hope these kids aren't going to get hurt!) and soccer cleats are recommended. these are little 2-year-olds! he's going to grow out of this equipment so fast.

and so it begins, the extra-curricular activities....

today's weight check

2009-06-24T21:51:00.000-07:00

orion goes every month to get weighed at his pediatrician's office. in the last month, he gained more than 1.5 pounds, making him 23 pounds exactly! pediasure is like a child's version of miracle gro :) since he's doing so well, she changed his visits to be every two months. nice, one less thing to worry about!

tomorrow, we are going to see his neurologist for a follow-up. it's been about six months, i think, since coming off the keppra. let's hope for a short visit!!

going private

2009-06-24T21:46:00.001-07:00

we decided to make our blog private. we post a lot of medical information here, personal pictures, orion is growing and getting older, and we are taking him out a lot more! we didn't want the whole world to know where we are at a given time. most recently, we had some random guy contact us because somewhere in our blog we posted our SF address, and he wanted to ask us about the unit before deciding to move in. weird?! i think so.

i added a new column on the right side called "upcoming events." there is waaaaay too much stuff to do around here, so i thought i'd keep a log of fun things we might be going to. you never know, we could have some crazy stalker, i know i have before, and i know friends who have too! crazies.

long-overdue update!

2009-06-08T20:45:00.000-07:00

orion had his echo and ekg monday morning. boy was he good! he woke up early, ate a massive breakfast (very, VERY rare) and was happy the whole way there. he got a lollipop and stickers, and all is good!

everything looks the same, valves are still a bit leaky, but that is normal for him. his ekg was the same, nothing new to report. he did well during the clinic visit with his cardiologist (like usual), except he was a bit shy this time around?! maybe because we haven't been in a long time. we were always going about every month, then it became three months, and now it's six months! that is just crazy. i can't imagine not going to get him checked in six months. but, he is still scheduled to have a cath and MRI in august/september, which will mark one year after his last surgery, the bidirectional glenn.

we originally got a gift for our cardiologist's daughter since i knew her birthday was coming up. i didn't realize until last night that her birthday will be later in the year, in which we will be seeing the cardiologist again. so, we decided to keep the gift for orion!! haha :) i really wanted to get this for him, and the actual gift i was looking to get for the daughter i couldn't find in the store. so it all worked out. orion opened his present when we got home after the appointment. here's what he got!

he loves this thing! it's got everything he is obsessed with right now: circles, numbers, and shapes. strangers are amazed by his interest in counting and the alphabet - c'mon now, he's a kid and is ready to absorb anything that comes his way!

on another note, moriah is STILL in the hospital, poor girl. we don't visit much since orion still gets traumatized from going to the hospital, even for a visit. the night of his echo, he had a lot of nightmares, whimpering in his sleep and he would say "ow" a lot. it was really sad! all in his sleep. we are still praying for moriah to get better (plus all the other babies and kids in this world!).

oh, i forgot to mention! we asked our cardiologist about travelling overseas. orion should be ok to travel to europe! we want to visit my sister and her family, so maybe we will try going next year. for now though, we will stick with california, and might try going to yosemite. but first, we will check out another local place for elevation to see how orion does. last time we drove down to la, we went through some high point, can't remember which, and he turned blue for a good 15-20 minutes.

he's also being brought down on his lasix. he usually takes 1ml three times a day. now, we are trying out his middle dose at 0.5ml and keeping the other doses the same. hopefully he will be ok with this gradual change.

i am prepping the house for a visit from anson and vincent next week. i hope they are able to make it! vincent's last day of kindergarten is tomorrow, i can't believe it!!!!! i got him a little surprise gift :) then we'll be driving down to la sometime this month. woohoo!!

New songs uploaded... Tawny's necklace and more...

2009-06-07T21:39:00.000-07:00

Franz Ferdinand - No You Girls
Metric - Help, I'm Alive
Phoenix - Lisztomania

Some Oldies but Goodies:
The Cure - Just Like Heaven

Weezer - Buddy Holly...

Buddy Holly:	Bo's new glasses:
Mary Tyler Moore's hair:	Tawny's hair:

A close up of tawny's mother's day necklace:

what's up with oreo's new branding?

2009-05-23T23:06:00.001-07:00

i was at target and came across these:

my first thought was that it was target's version of oreo? but then it says the brand-name oreo! i do not like this new re-branding AT ALL! it looks generic, like they are trying to be this hip, modern cookie, when really, all we want is the classic oreo. this logo is not going to last. it's more of a trendy look than a long-lasting impression kind of look.

do-over please!

new art, new friend

2009-05-08T23:54:00.000-07:00

orion tried watercolors for the first time today. i have to say, much cleaner than crayons and markers, and a much different style of art too! he loves it!

orion also got to play with a neighbor friend too.

i thought orion was rambuntious! not even close when compared to that boy. he sure had tons of energy, i absolutely sympathize for his mother. they both ran around the courtyard for about two hours and both of them were sad to return home for dinner. there will be plenty more days for play time, boys :)

more random miscellaneous stuff

2009-05-08T23:52:00.000-07:00

i woke up to this:

bo doesn't even like barbasol! i'm going to give it to orion to use for some artsy stuff.

random miscellaneous stuff

2009-05-08T23:21:00.001-07:00

ok, this post doesn't really have much to do with orion's health or anything aye team for that matter. it's probably just rambling that i thought i'd share :)

i hardly shop at safeway (for those not in the bay area, safeway is the same as vons). anyway, i only go there to use our WIC vouchers that orion receives, and i don't really like shopping there because their stuff is way overpriced. the sucky part is, there's a safeway on every corner so it is SO convenient (like right across the street). when i don't feel like trekking to trader joe's (which isn't even that far either), but you have to realize i'm bringing orion with me which is already a feat in itself, i will go to safeway.

when i shop there, i get easily distracted because there's too much stuff to look at. i'm used to TJs where pretty much everything is its own label and you won't really find commercial items. so when i'm at safeway, i find weird, random things like:

tempting right? especially when i know bo would absolutely LOVE this!!! but i wasn't about to spend $6 or whatever it cost. i figured a picture will suffice.

moving on to the cereal aisle, i was trying to find something "healthy" yet bright and cheery enough to grab orion's interest. the best thing i could find was lucky charms?! seriously?? every single box of cereal's main ingredient was sugar. i remember long ago my nutrition teacher said labels will put ingredients in order of amount. so the first few ingredients listed makes up the majority of the product. i think lucky charms listed sugar as third. whoopee.

finally i spotted this:
eating right kids fruity ringlets. ding ding ding! eating right is a division of safeway products, and this cereal was colorful and happy, plus it is naturally sweetened with sugar cane. i traded in the lucky charms for this stuff. orion digs it.

okay, on to produce. wow, is this store expensive. now i'm comparing safeway produce to asian market produce. you can find a head of lettuce at the asian market for 50 cents. safeway charges nearly $2. i think i need to find a middle ground and shop at a local farmers market because frankly, i don't want to drive 30 minutes to san jose to save some change. which reminds me, starting next month, WIC is offering farmers market vouchers! i'm supposed to remember to ask for them.

i think that's my rant on grocery shopping (the worries i have from day to day haha).

ON ANOTHER NOTE:
i got a sweet surprise in the mail yesterday!

my favorite is the little drawing of vincent and orion building legos :) made my day!!!

VIDEO - trying to get cookies

2009-04-28T16:45:00.000-07:00

update to our site

2009-04-28T13:34:00.001-07:00

i added a list on the right side of our site - it's a list of words orion knows/vocally says. i tried to write down all that i can remember :) he is talking so much!!

he can already count in order from one to ten, though he skips some numbers. but cool either way!!!

did i mention his speech therapy evaluation already? i can't remember. anyway, he was referred to packard for an eval since he seemed to have trouble with pronunciation. the specialist said he is right on track and is not having any trouble at all! in fact, there are a few areas where he is ahead of those in his age group! he is already recognizing letters and pronouncing sounds, something that kids do around age 3. yay, one less thing to worry about :)

spring time!

2009-04-22T12:52:00.001-07:00

we've been living in our new place now for over a month and slowly decorating and getting it to be homey. orion's room is pretty much set (aside from needing the walls painted and putting up some artwork). we have our living room situated with all the right furniture and took a day out of the week to paint one wall teal. orion is still loving all the space, being able to run around and bounce balls off the walls :)

our last visit to the pediatrician, orion gained 7 oz. it was decided to have him drink pediasure (which he loves!) and since then, he seems noticeably heavier! his cheeks are fuller, so i really hope it's working.

the weather here has been insanely hot! 95-degree weather calls for pool time, and man oh man, did orion love swimming. it was the second time being in the pool (the first time, he was a tiny baby at ali's house). we didn't know he would like it so much! so that night, we went out to target and bought him a floatie. it's been too hot to go outside, but today seems to be a nice pool day so maybe we'll make it out after he wakes up from his nap.

easter was a fun, relaxing day. we did an easter egg hunt outside in the courtyard, eggs filled with chocolates, gummies, hot wheels, and bouncy balls. we had a picnic lunch outside and then ended our day with coloring eggs. bo has never colored eggs before, and this was finally the first year since orion was born that we have actually been home and out of the hospital for easter! we all had a very nice, and messy, time.

our next heart babies meeting is this weekend at kathy's house. fun fun fun! we've got art projects lined up for the kids plus bbqing for lunch. i hope we get to meet some new families, the same families tend to show up at these things. i changed the meetings to be monthly instead of seasonally to allow more families the option to come out and visit. hopefully it works out for everyone!

we all seem to be pretty busy with AMG work stuff, spending too much time on FB, and just doing day-to-day work at home that we are not blogging enough. hopefully i will stop procrastinating, finally get pictures off my camera (really, these are pictures from before christmas!) and keep everyone in the loop with the aye team!

HAPPY SPRING EVERYONE!

working hard on a saturday morning

2009-03-14T11:13:00.000-07:00

mindy

2009-03-13T15:37:00.001-07:00

my sister's dear cat mindy passed away this morning. she came home to us when i was only in 7th grade, making mindy 17 years old. she was a funny one, she loved to sleep in shoe boxes and torment orion. it was her time, and she will be missed. alice gave her a great life.

"failure to thrive"

2009-03-13T15:32:00.000-07:00

"failure to thrive" - that is what orion's pediatrician noted when she did his 2-year wellness exam. he has pretty much been the same weight since last fall, only because he spent a lot of the winter sick. even though he gained one full pound in the last three weeks, he is way off his own weight curve now, something he has been steadily following since he was born. he is already in the negative percentile on the weight chart, and now it's even harder that he's not even following his own curve anymore. he weighed in at 20 lbs 5 oz yesterday.

our last visit to the pediatrician, she recommended giving him a little "splash" of half and half in his cup of milk everyday. well, now that "splash" has turned into 1/4 of his cup, but i just pour in about half anyway. i need him to bulk up!!! i still put butter and oil all over his foods. he doesn't have trouble eating, just trouble retaining the weight. he's been eating great these last few weeks, hence gaining the pound, so hopefully he can continue this route so he can chunk up.

for now we continue his usual butter and oil and half and half routine.

most amazing apple tart ever

2009-03-10T23:22:00.000-07:00

rarely do i like tarts for a dessert. really, the only dessert tart i like is the fruit tart, and it's gotta be from a vietnamese bakery. so when tina came over with an apple tart from bouchon bakery, i politely said, "okay, thanks." little did i know how DELICIOUS it would be! i was blown away. YUM. i have a new love for tarts!

fun pics

2009-03-10T23:14:00.000-07:00

super thirsty!

being silly

fun with dad in the courtyard

waiting for sesame street to begin

preschool

2009-03-10T23:02:00.000-07:00

orion was able to fit into this fall's enrollment of preschool! yay! i spent quite some time researching neighboring schools, something that would be a good fit for him. after narrowing it down to parent-participation schools, we toured three schools. we liked all three, but we chose our favorite and just hoped for the best. i actually registered early at the school we did want because we thought we'd be gone on vacation during the open house. if i didn't register early, the class would have been full, so i am so thankful we made it in! he will begin in september, and class will be 2.5 hours a day, twice a week. i will be able to attend the class once a week, who knows what i will do the other day of class?! probably sit in the parking lot and wait :)

orion's development

2009-03-05T17:19:00.000-08:00

we went to the child development center earlier this week, and he is doing great so far, except for his speech. though i don't see any problems, the doctor was concerned that orion does not pronounce the end of the words. for example:

house=how
bird=bir
cup=ka

and so on.

gimme a break!!! he's TWO! just learning to speak, i would think this is normal? he used to say "ah" for "on" but now he pronounces it all and says ON. i think it just takes him a while to learn and practice the entire word, but i still told his early start specialist. she says it pretty normal, as long as he is combining words and has a minimum of words in his vocabulary (we estimated about 50+ words). she said she would make a note of it in case the doctors thought it was a concern too.

anyway, he has an appt with a speech therapist next month. yet another appt....

living the irvine style, without the irvine

2009-03-05T17:15:00.000-08:00

as most of you know, we just moved (again). this time, i REALLY promise not to look for another apartment - for at least a few years :) we are still getting settled in, but orion warmed up to the new adjustment quickly. more space to run around in, and his bedroom has a lot of room to fit all his toys in! most of the apartment is still a mess, so i will take pictures once it looks a bit more orderly.

i really like living in an irvine apartment community again. even better, we don't have to live in pretentious irvine! plus, we have awesome neighbors!!! we like being within walking distance to ryan and verike's and mitch and diane's. it's a hop, skip, and a jump. thanks to EVERYONE that helped up move, we couldn't have done it without you guys!!

super sick and then some

2009-02-18T20:21:00.000-08:00

the last few days have been very rough for orion. he had a fever, the highest being 102.5. his medical team has always advised us to call the hospital if it was ever 101 or higher. right away, i gave him tylenol and tried wiping his body down with warm washcloths. after no success, i called my mom and she suggested using a mixture of rubbing alcohol and water. that did the trick! aren't moms amazing?! his fever dropped to 100.5 and stayed around there for the rest of the day.

the next morning, we took him to the pediatrician's office, and though our ped was out that day, we saw another doctor in the office. after checking his lungs and ears and seeing there was no congestion anywhere, we were sent back home. his fever never came back, but his cough got way worse. last night, he was coughing nonstop all night. the poor guy did not sleep at all, and neither did we. we went back to see our pediatrician this morning, and she said his cough was sounding more like he swallowed something he shouldn't have. she sent us to the hospital to go get xrays, but they did not find anything that would be blocking his airways.

orion was able to get some sleep today, but he has not eaten anything at all. he just drinks water or apple juice, and if he does eat, all he wants is kix (hey, that's better than nothing).

so we are going back to our pediatrician again tomorrow so she can see if he's gotten better or not. if it's still the same, then we are off to see an ear, nose, throat doctor, in which they can look in his throat with a camera. i think his cough is sounding more wet though, and his nose is back to runny again, so maybe this cold got a second wind :( either way, orion is miserable.

on a last note, i fed him rocky road ice cream yesterday afternoon, a few hours before this nonstop coughing started. i usually avoid the nuts when feeding him, but one snuck in his mouth, and i watched him chew it. i figured he was fine if he could chew and swallow. now, i realize that maybe a small little piece could be stuck in his throat which is causing him to cough. sigh....i am so mad at myself!!!! i feel like i have caused him all this misery. let's hope tomorrow will be better and we will figure out what's going on with orion.

cold getting worse

2009-02-14T23:51:00.001-08:00

orion is now coughing a ton, sneezing through the day, but his runny nose is mostly gone. i am also guessing he has a sore throat because he keeps rubbing his neck, and he is still grabbing at his ears. he had trouble falling asleep from all the coughing, and then he even threw up! i don't know what that's about. i'm sure if it continues, we'll be back at the doctor's on monday.

i woke up sick this morning, mostly feeling like my whole body was achy and i am coughing again. i slept in while bo played with orion, but now bo is sick!!! vicious cycle in this house. we should have worn our masks!!!! oh well.

sunday is LPCH's heart party that they have every year. all the cardiac patients and their families are invited to the park for a potluck party and lots of games and activities for the kids. we missed it last year because we were in orange county to celebrate orion's first birthday. hopefully we will be well enough to attend tomorrow!

we got a couple of videos of orion today. i will ask bo to post them later.

happy valentine's day and CHD awareness month!

2009-02-13T11:28:00.001-08:00

orion IS sick!!!

2009-02-12T23:16:00.000-08:00

he was sneezing all day yesterday and woke up with a runny nose today. the last couple of days he was scratching and pulling at his ears, so we went to the doctor today to get it checked (plus get his synagis shot!). it's just a cold, and his ears are congested, but no fluid so no infection. thank goodness! hopefully he will be in good spirits and the cold will not get worse.

we have early start tomorrow afternoon and then we are headed out to a far away place to pick up a dining table with chairs that i found on craigslist. our poor dining table now....it has been beaten with teeny spoons and forks, so i opted for a plastic-like table top that also has rounded corners. no more head-bumping! the new table is kinda funky old school, something you'd probably find in your parents' home, maybe even your grandparents. haha. i guess we are becoming more retro-vintagey and less IKEA these days. boy, we are getting old!!!

well, i am headed to bed because the monster just fell asleep (yup, at 11pm). what are we going to do with this kid?!

teething

2009-02-11T14:52:00.000-08:00

we've decided orion must be teething. the fever he had only lasted the night, and he has been very drooly the last few weeks. after his echo and seeing that his heart is essentially unchanged, we knew he wasn't sick with anything. so.....we are just bearing it with his neverending whining, crying, and complaining.

he still has two leaky valves - one is his tricuspid valve and the other is his artificial valve. i didn't really ask what the negative impact is with this leaking, but it's very minimal so i left it at that. they are keeping an eye on those two valves, and our next echo appt is in may. then in september, he will have another heart cath. that will mark one year since his last surgery! though september sounds far away, it doesn't feel like it to me. i really don't like when orion has these procedures done as an outpatient because they send him home immediately afterwards. isn't that crazy? they put him under, do the cath (which is usually about 2-4 hours), they bring him back to day surgery to recover, and then we can take him home as long as there isn't any bleeding. it's just awfully weird to go home right away because he is so loopy and out of it. from our last experience, it took nearly two weeks for his body to become normal again and get the anesthesia out of his body. his usual symptoms are a lot of crying, clinginess, no eating, no sleeping, etc, so as you can see it's kind of tough. but i'm sure he (and us too) would rather be at home than in the hospital!!

other than that, everything seems to be on track at home. i think orion has been having more trouble sleeping since our appt. he tends to be traumatized and i wouldn't be surprised if he has been having nightmares about the visit. hopefully this will all pass soon.

bo is still busy with work as usual, which is great during this crazy economic time. we are working on moving, once that is finalized, i will post more details. we plan on going to la next week so bo can have a track day with anson and the subaru group and also have a family birthday party. we are also having our taxes done down there.

not much else to report. our appts have definitely gone down now that orion doesn't receive physical and occupational therapy anymore. though we absolutely loved taking him to the school for these therapies, we know he doesn't need it and is doing just fine. it's almost weird not to have any appts, i never know what day it is now! he is still receiving early start services, and we finally got started with a new teacher because our last one was crap. after our initial visit, she says he will probably not qualify anymore because he seems to be way ahead for his age. so nice to hear!!! i HATE having other assessments done where they tell me he is so behind, delayed, etc etc and make me feel like a bad parent because i'm not doing enough. those are the assessments done in a clinical office with staff in white coats and not friendly at all. of course kids aren't going to do anything for you! anyway, i am blabbering. we are happy to see orion is developing on schedule and doing great. yay!

i am on my second load of laundry and now it's time for dishes and cooking :)

fever

2009-02-09T02:01:00.001-08:00

orion is sick with a fever. he woke up this morning at 1am not feeling well. this is explaining a lot! he hasn't been himself all week, and starting thursday, you can see blueness in his lips and face. other than that, personality wise he still seems the same. we have an echo monday morning, so we did not take him to the doctor right away. we figured we would find out why he was turning blue when we saw his cardiologist. this reminds me of about 6 months ago, when he just out of nowhere, turned very blue - his lips, face, hands and feet. the next day he was diagnosed with roseola. so we know this must be a virus that he has, and hopefully it is not heart related.

the echo is in the morning at 8am, so we will post updates! we have been pretty nervous about it since his last echo was in october. hopefully there are no changes and that this blueness is due to a virus!!! darn, we try so hard to keep our home and ourselves germ-free, but i suppose it's not 100%.

continued prayers for the mark family

2009-02-07T14:43:00.000-08:00

andrew passed peacefully earlier today....please continue to send prayers to the family....

Please pray for my friend Andrew and his young family

2009-02-05T09:26:00.000-08:00

Our dear friend and his family have been fighting cancer for the last few years. Im writing this post with a very heavy heart as the doctors have now said he has hours left. Please pray for him and his family:

quoted form their blog:

Pray that the Lord would continue to sustain Andrew's life and if it is in His will that He would show His glory through a miraculous healing. Pray that the Lord would give Grace strength and peace, and also the same for the family surrounding them right now. And pray for wisdom and clarity of mind for the doctors...

Please pray especially for comfort, strength and peace for Grace(his wife), Gracie and AJ(his children).

click here for their blog

one of my least favorite things

2009-01-29T16:45:00.000-08:00

orion is just so quick and smart. one of my least favorite things he can do is use our phones. just last night, he woke up at 4am, found my phone, unlocked it, scrolled through the icons to get to a bubble game i downloaded, and he started playing away. argh! it is so frustrating because when he wants something, he has to have it! i had to take it away, he threw his fit for a while, then finally fell asleep. i think i need to start hiding my phone when he's awake from now on.

maybe that's why it died on me! orion's been messing with it!!!

talking up a storm!

2009-01-29T16:25:00.000-08:00

this kid doesn't stop! it seems since we got back from OC he has been picking up words quickly, mimicking sounds, and using them in context with coinciding objects. like right now, his favorite words are "door," "bubbles," "more,""please," he probably says those the most. i have a long list of his spoken words i have kept track of, i will post the list at some point.

overall, he is still spunky as ever! his desire for independence is getting stronger, so we offer him a lot of choices. for example, instead of saying, "do you want to eat lunch?" i will ask, "would you like noodles or a hot dog?" it makes kids feel great to be making their own choice :) he's also learned to say "no." before, it was just for fun, but now he knows what it means and uses it all the time! at least he is not yelling it to me...yet!

no pictures

2009-01-29T16:22:00.000-08:00

ok, so my phone totally died yesterday, and bo was able to recover my 1000 photos that i never bothered to back up. haha, i guess that's what i get right? so it's currently restoring, once i'm all set up again, i will finally post some pics.

neurology clinic visit

2009-01-29T16:11:00.000-08:00

things have definitely been busy all month, so i will start with today, then work my way backwards!

we saw orion's neurologist today for a follow-up. since orion hasn't had any seizures since his last incident in march of 2008, he is going to slowly be taken off of keppra over the next 4-6 weeks. now first, the news sounds great because less meds the better right? but at the same time, it could cause him to have seizures then we'd have to put him back on it. i'm really hoping for the "less meds" idea, i don't know what i'd do if he had a seizure at home.

the doctor also said to never leave him alone in water, not even for a second. he said that is usually the saddest case when kids have seizures and they are in the bathtub or in the pool. honestly, i hate teaching orion that he has certain limitations, but i suppose it is a part of his life. it definitely makes me sad, but i know it is for the best and he will grow up to learn what is safe/isn't safe for him to do.

merry christmas, happy new year, and more!

2009-01-02T15:10:00.000-08:00

we are still in orange county with grandma aye :) things are quite busy, so i haven't had much time (or energy!) to blog. bo and i usually get some good quality time in when we come down here. bo's mom is a great babysitter to orion. this time though, we had so much stuff going on, plus a lot of people in the house are sick, so that means i have been watching orion for most of the day. bo is always busy with work.

let's see...christmas! we usually do christmas eve at anson's house, then christmas day is spent at the aye house. i can't really remember why we didn't do that this year, but anson still came over on christmas day. we decided to do a thanksgiving dinner since everyone missed thanksgiving this year. anson made the turkey and i made most of the sides with help from others, and semone made her awesome cornbread and dessert (blueberry streusel!). we opened presents in the morning. there were like a gazillion presents! we opened in order of age, but after a couple of rounds, everyone was just opening them all at the same time. we also wrote up christmas lists this year so we wouldn't spend too much money and everyone would get exactly what they wanted. bo was nerdy enough to put together a google spreadsheet that we all shared so it was really easy to manage.

dinner was wonderful as usual! we had a nice meal and some great company too. it was mostly relaxing and not so crowded. since last year was orion's first christmas, bo's mom invited pretty much the whole world and he was too nervous by the crowd.

after christmas was over, it was time for me to start prepping for my good friend mari's baby shower. i was so excited that she was pregnant, i knew i had to put together a sweet celebration for this time in her life. i spent the friday and saturday after christmas doing the party, and turned out perfect! the girls all had a great time.

then came the car. we drove down in a rental with the intention of buying my sister's friend's car. after much back-and-forth stuff with figuring out the money and car stuff, we were able to pick up the car from him early before paying for it so we could drive it home. what a nice thing for him to let us have it early and it is a great car too! 2005 infiniti fx35. i've never owned an SUV before, so it's definitely a change for me. driving it back to mission viejo from venice was crazy in itself, let alone driving a giant car! bo is checking everything and making sure it's in good condition before driving it back up north. we just got a new set of tires (all four of them) that cost way too much, and even funnier, we decided to walk to cost plus while the car was being worked on. we ended up spending more $$$ on little knick knacks and to top it all off, we put a dining table on hold at the mountain view store! it was a cool deal we couldn't resist! yep, so now the new year has started, and we are starting it of broke!!! hehehe

bo is going snowboarding tomorrow and i will be having a girl's day with mari. if orion is in a good mood, he will stay home with grandma and grandpa and enjoy his time with them. we will be driving back up north on sunday so we can go back to our routine life full of doctor appts and such. it already begins on tuesday! orion has his first dentist appt and bo is also seeing his doctor.

bo and i did not get to our date night that i planned, it was actually going to be our wedding anniversary dinner. maybe next time.

oh and by the way, i feel like i'm surrounded by babies! with my best friend being pregnant, having a still-new nephew, and finding out another friend of mine is pregnant, i forget how cute little babies are and now we want another! of course not for another long while until orion is in "good shape" for a long period of time. after all, he just had open heart surgery only 3 months ago!

lastly, please continue your prayers for little moriah. she just had her THIRD surgery this morning, her third one in a mere two months. that girl needs to get better so the kiddos can play! at the same time, angelina had her surgery on the 30th and i think they are already home!? talk about bouncing back up on her feet!

will post pics later :)

anniversary

2008-12-19T22:41:00.000-08:00

first off, i have to say a big apology to bo for accidentally running his iphone through the washing machine just now. i washed a pair of pants that was just worn, and when i asked him if they were dirty, he was half asleep answering me. dangit!! new 3G.... he is working on it right now. sigh....

earlier today, we went to visit the nelsons to bring them a big bag of goodies, courtesy of "heart babies of the bay" and the manzi family. several members of our support group up here sent me photos at my request. i wanted to put together a book of heart babies so they can see how healthy and wonderful the kids are! the campodonicas also included a sweet pink butterfly and tinkerbell blanket that jennifer made. rana, who had met the nelsons at chla, also contributed a giant sack full of yumminess. it was my pleasure to do the shopping, and got some great stuff at cost plus world market, one of my favorite stores, and one of my favorite jobs during my college days.

after that, the three of us had dinner at our favorite korean restaurant, sigoljip korea bbq, in santa clara in celebration of our 3rd anniversary - that is, our "BF/GF" anniversary, not wedding anniversary, hehe. we ordered way too much food on top of all the little dishes they serve you that we totally forgot about. orion ate TONS because he was so focused on all the other kids in the restaurant. he didn't even realize how much tofu and beef he ate.

my hair is sooooooo long! i haven't had a haircut since june, and i can't wait to finally get down to OC to see my gina. orion was so nice and clean, up until the last 5 minutes of the meal, when he decided to start throwing rice everywhere. mmmm, nice and sticky. we added an extra big tip just for the mess he left.

we are driving down monday, hopefully if the weather permits. it has been icy the last couple of days, so if the weather is no good, we'll stay up here to be safe. currently, our presents are wrapped and are high up on shelves out of orion's reach. our sad christmas tree has ornaments only on the top half of the tree since he kept throwing them all over the place. the bottom tree is now decorated with old halloween stickers. maybe next year he will be old enough not to mess with it.

off to get the monster to bed. he had an insane day today after getting no sleep last night and having an off-schedule day today.

short hospital visit

2008-12-11T14:27:00.000-08:00

i meant to blog last night, but we were so busy, i didn't get to it. after visiting our pediatrician yesterday to follow-up on orion's infection, she suggested we see someone from the surgery team to possibly drain the infection manually since the antibiotic was not working. we got an appt today at noon, and orion was seen by one of the surgeons. i should not have watched the procedure!!!!

orion got some codeine right when we arrived for our appt. the surgeon gave him so local anesthetics to numb the area. he dug in there with scissors (it was not pretty). i just about cried with orion. they found a suture in there! from two months ago, hence the infection. they dug it out, and he should be fine now. we are continuing the antibiotic for another week, and he should be set. thank goodness that is solved.

i also noticed yesterday that orion has a new tooth! no wonder he has been cranky and not eating! now that this infection thing is over, maybe he will start feeling better again and back to his usual self. until then, we are just bearing with the tears and madness through the days and nights.

he hasn't had a B-O-T-T-L-E since that night i last blogged about it. he has been so good. he still signs for one, but we have not given in. it has been replaced with katie mulua videos, so at least he is being soothed in some sort of way.

after our clinic visit today, orion and i were viewing the choo-choo train the hospital has near the heart center. we ran into justin (moriah's dad). being me and practically frantic and still stressed from the procedure, i went on and on about orion and DUH! finally hit me and asked how moriah was doing! (silly me, she just had heart surgery last night!). what a dummy i am. her surgery went well, but she is still having a lot of GI issues. they really could use some prayers right now. that poor girl has been through so much, so much more than orion has, and i can totally feel for her parents. so many questions unanswered, it really is a tough thing to go through. so please send prayers to the nelsons, they really need it!

funny and growing moments + PHOTOS!!

2008-12-06T23:45:00.000-08:00

today, i couldn't find my phone. i used bo's phone to call it.

i found it in bo's shoe.

how cute and funny is that? i love how kids just do silly things without thinking anything of it.

the last couple of days have been big days. bo started using the shelf from our dining table and turning into a ramp. he inclines it on the couch, and orion practices walking up and down it, grabbing his cars and racing them down the ramp. our physical therapist actually suggested this kind of exercise several weeks ago to get him to build up his muscles. it's working! it's also helping out his balancing skills, and it's all fun and games too. it's one of his favorite past times.

orion's also understanding when he's pee'd/poo'd into his diaper. he will go into the bedroom, grab a diaper, bring it out to us and point to the bedroom to go take him in there and change him. HA! he's quicker than us. he's also showing interest in his potty, so i think it's time to start....sigh....it's such a big job, but it's got to be done.

tonight was the first night he fell asleep without a bottle. he ALWAYS needs a bottle, whether or not he's thirsty. we've been contemplating lately on weaning him because that darn kid just drinks too much! an average toddler probably drinks 10-15 oz of water a day. orion drinks at least 30-40 oz. that is so much! and then, that really adds to the diaper changes, we must go through that giant value box in a month (that's 160 diapers!). plus, i think all that water-drinking is making him too full to eat. so tonight, we let him have one bottle (5 oz water) and he cried for more, but after 30 minutes of tears, he gave up and went to sleep. i'm aiming to not give him any bottles in the middle of the night (he always wakes up about every 3 hours to drink some water). i hope i don't give in!!!

he's also had trouble tolerating cow's milk in the past (rash and vomiting). we tried goat's milk, but that didn't work either. in the past week, he has become obsessed with cheddar cheese and stonyfield farm's yokids squeezers.

he never really liked yogurt from a cup, but these little tubes of yogurt is so appealing to him! he will eat two at a time, and will total 4-5 of these a day! i'm sure he would eat a whole box if i let him. you can find these at trader joe's.

since he's been tolerating processed cow's milk, i decided to try cow's milk again. i mixed 1 oz of whole milk with 3 oz of soy milk and he didn't mind it. no rash, no vomiting. today, we are at 2 oz whole milk and 2 oz soy milk and he enjoyed it. hopefully i can get him to drink just whole milk, it will be so much more nutritious for him, and cheaper too!!!

so, some great stuff happened over the last couple of days. on the downside, he hasn't been eating well in the last 4 days. he would eat breakfast, but would not eat lunch or dinner. then today, he didn't eat any breakfast at all, so i decided to make lunch fun and get him this:

ORION'S FIRST HAPPY MEAL!!

he ate most of the fries and half a nugget. he drank half of his juice. he ended up finishing the rest of the nuggets at home, only after i spent 45 minutes blowing bubbles to distract him and getting him to eat.

prior to mcdonald's, we took orion to one of our favorite parks in palo alto. it was such a nice day today, we decided to stop for some play time on our way home from LPCH's rummage sale.

here are some long overdue photos that are from the past month:

couch time with his fave soccer ball and raisins

reading after visiting moriah

response to "where's boobie?"

straws = inexpensive entertainment

dipping cookies into milk

that funny face you see in a lot of his photos is his infamous "picture face." he does this whenever the camera comes out.

orion also got to spend some quality time with my mom while she was here earlier in the week for a few days. i did not get any pics with my camera, so i will have to get them from hers. she cooked a TON of food, kept our apartment clean, and played so much with orion. he had a blast. she left in the morning while orion was sleeping, and that day was pretty rough for him. he was looking for her, calling her, and was just sad and moody. it took a couple of days for him to get out of that funk.

i hope you enjoyed the photos, and i will try harder to post more pictures in a timely manner!

orion's got another follow-up with cardiology on monday and also seeing pediatrician on wednesday. oh yeah, forgot to mention after him catching a cold, he also got a staph infection on one of his chest tube scars. the antibiotic ointment did not get rid of it, so he's taking an oral antibiotic. hopefully it will go away by wednesday! if it doesn't, i don't know what the next step is. let's hope this infection clears and does not spread to other places like his HEART.

ok, last bit of info: please continue sending prayers to baby moriah!!!! she will need heart surgery again, and needs all the love and healing she can get!!!

Playlist Updated!

2008-12-06T16:34:00.000-08:00

After more than two years, we've finally updated our playlist. Its a fun mix of songs that all three of us like from They Might be Giants (the only kids' song) to Indie to Christina Aguilera to my best friend Ali. Hope you enjoy, and let us know if you like (or hate) any of these.

Notes:
Orion's favorites are Vampire Weekend - A-Punk and Cold War Kids - Somthing is Not Right With Me and he loves to dance to anything Vampire Weekend (he actually liked it last summer when they first got played on Sirius Left of Center, before they blew up). Little Joy is a side project form the drummer from the Strokes. There are some really really funny songs like songs from Of Montreal or Rufus Wainwright - Instant Pleasure or Apoetnomadali - Upscale Orange County. The playlist is on "shuffle," you can turn shuffle off by hitting the button on the bottm There are 34 songs as of today, so don't forget to scroll down.

CHECK IT OUT!

TRY AND GUESS WHICH SONGS ARE TAWNY's Bo's or ORION's

spunky butt

2008-12-02T22:55:00.000-08:00

orion is pretty much back to his old self. been kinda busy with him, so no blogging! bo was really sick for a week or so, so i focused most of my attention on the boys getting better and trying to keep up with housework.

thanksgiving was great. i meant to post earlier about it, but i will have to make this one short. maybe later!

my mom is visiting up here. she was originally traveling to OC since vincent's birthday party is this coming weekend. since we cannot make it to the party anymore, she decided to come up here for a few days. it has been great! lots of homecooked food, a babysitter, and even cleaning too! she's taken a good load off my shoulders :)

i also wanted to post a small update about moriah. she has been having setbacks after setbacks, so she needs a lot of prayers! it has already been 18 days post-op, and she's run into several issues and is still in the hospital, with the breathing tube. she might even need another heart surgery, so they will find out tomorrow what the surgery team says. i feel awful that we can't even visit them because we have been sick. this is such a hard time for ANY parent, we know exactly what it's like, and it helps to have support nearby, even if it's just a quick check-in.

we actually have a clinic appointment next week, and i'm hoping we will be germ-free by then to at least see moriah's parents outside of CVICU.

please send them some love and prayers!!!

orion is officially SICK.

2008-11-25T23:01:00.000-08:00

he woke up at 330am this morning, full of coughs, sneezes, and a runny nose. he did not get much rest, neither did i. even prior to that, i noticed on one of his chest tube scars, it was a bit red. i thought it was a bug bite, so i put some cream on it. by morning, it looked more like a pimple with puss! so....off to the pediatrician AGAIN. that's already three times this week. our pediatrician was not there today, but we saw one of the other doctors in that office who is great. we love all of them. anyway, she took a culture and we should hear back by the end of the week what kind of infection it is. let's hope it's nothing too serious.

this means we will not be joining the thipps for thanksgiving :( we are so sad to miss the chance to spend the holiday with friends, who really are our family. they offered to bring us some food which is so sweet. i think i will make a mini-thanksgiving dinner at home for the three of us. i'm thinking rachael ray in 60!

happy thanksgiving to everyone, enjoy your family and friends!

back from peds

2008-11-24T11:00:00.000-08:00

orion is looking great! his sats were 99 and the doctor said his lungs sound really clear. i forgot to mention in the last post, when we went to her office on friday, he had questionably gained more than one pound in one week. we definitely know that is fluid retention, not real weight gain! so today, he weighed in at his original weight. now we know the fluid is getting out.

we are still planning to stay near home for thanksgiving, even though he's look great. vincent's 5th birthday is the beginning of december, so we will be down for that for sure! we'll be up here having thanksgiving with the thipps which we know will be amazing and fulfilling haha.

on a side note, i hate walgreens!!! orion has medi-cal, and they are always trying to charge me whenever i pick up prescriptions. today, one of the ladies was trying to convince me that, because i didn't pick it up the same day i ordered it, the prescription becomes invalid and i would have to request a new prescription from the doctor. since when were you not allowed to not pick up right away? anyway, another lady came to check it out, looked a lot more closely, and said i am allowed 11 days to pick up, and thus, was given our medication, no charge, still covered under medi-cal. sheesh, i wish there was better consistency out there!!!

getting a bit better, but nothing drastic

2008-11-23T15:16:00.000-08:00

it's almost been two days since orion's dose of meds changed. his mood is better, but nothing life-changing. he is still having trouble sleeping at night (though his day nap he is fine). he's been coughing a lot, especially at night and in the morning. we will see how he continues to do through the week....

aside from that, we have been talking about getting a bigger car! the sentra is pretty small, especially when going on road trips, it's jam-packed in the back. so we test-drove the 2009 scion xB last night. what a fun, spunky car! we really did love it, but after coming home, we realized we honestly don't need a new car. we thought we could lease under our business and write it off, but really, we don't need a car payment right now. so that idea is out the window! maybe in the next year or two....but if anyone out there is looking into getting a spacious car that is not an SUV, seriously consider this car! it is such a great price, especially for what it offers, and you can't go wrong with a japanese car. plus, scion has set prices for all cars so there is no haggling. i think i should become a salesperson there!!

ok, i am off to start working on our new playlist. those songs are so outdated!!!

long day at the hospital!

2008-11-22T14:48:00.000-08:00

yesterday was unexepected. after a couple of nights of weird symptoms, we decided orion needed to be seen. he was breathing heavily, turning more blue, not eating/sleeping well, and was just overall cranky. we were able to see our pediatrician the same day, and in the office, his sats were around 92-93 (he's usually 98+). she said his lungs sounded clear and his ears looked good, but knowing his history, she wanted an x-ray done. headed off to LPCH!

his chest x-rays showed a teeny bit of fluid in his right lung. our cardiologist was busy that day, but he did take a look at the x-rays and reported to me over the phone. he wanted to the on-call to look at orion. so we waited in the heart center for a bit (by now, it was nearing the end of a friday) and we were so happy we were able to go to the clinic instead of ER! the attending we saw was great, and she decided to have orion return to his original dose of meds. he's back on lasix three times a day and is taking aldactone, or as we call it "pink bubblegum," again. since last night, he seems to feeling much better.

we are going to hang out at home next week to see how he's doing. if things improve dramatically, we will head down to OC for thanksgiving.

after hearing the news that we CAN go home, we paid a little visit to moriah to see how she's doing. much prayers out to her and her family please! her right lung collapsed :( she is getting treatment, and she's looking better, but there is still some stuff going on in there. let's pray she will heal soon so they may all go home! to read more about her, check under our heart families bloglist :) they are one of the cutest families we've met, EVER!

hope everyone's having a great weekend so far, and we look forward to spending our holidays with you!

p.s. i forgot to report one thing! the radiologist spoke with our pediatrician and told her that one of orion's chest pins broke?! our ped has no idea what this means, if it's a good or bad thing or what, so we are going to see her on monday to figure it out. sounds scary doesn't it? what a way to give mom a heart attack. will post more as soon as we find out!

happy 21 months orion!

2008-11-21T00:38:00.000-08:00

orion is 21 months old on nov 21! my, has he come a long way in these last 21 months, and he is still going strong. his personality definitely shows his strengths, and he's got quite a personality!!! whenever he goes into surgery, i look back at old photos and remember milestones, fun times he's had, trials and hurdles he has overcome....i do the same when i also know another baby is in the hospital too.

we have been visiting moriah as much as we can, and the questions her parents ask us make me go back in time and remember all that has happened in his young life so far. i also love how much orion excites them just by seeing him and spending time with him. it lessens your worries when you see an older heart baby doing so well and being a happy-go-lucky kid. i appreciated seeing older kids as well while orion was going through tough times, or even before he was born! i recall being at ucla and the cardiologist we met with was kind enough to have us meet another heart baby (at the time he was just under two years old) and his mom. i was just in awe to see how beautiful this little boy was, how great it was to see him running around, and having the opportunity to talk to his mother. it was so encouraging, and i will always remember that day.

tonight though, orion really showed his determination and unwillingness to give up. and bo and i were very strong and did not give in (i'm usually the one that gives in after endless hours of crying). it was already past 10pm, and he was insisting on playing with his "coins" (leftover chocolate coins from his pirate booty on halloween). it was waaaaaay past bedtime and i had to be firm and let him know it was not time for play anymore. he cried and cried, i brought him into the bedroom, shut the door, and forced him to stay in there with me. he must have stood at that door crying his eyes out for 30 minutes. bo came in, he and i laid in bed while orion continued more crying for another 30 minutes or so. after a while, bo offered orion a bottle, left it on the edge of the bed, and we both said good night to him and pretended to go to sleep. within five minutes, orion came to bed, grabbed his bottle, and cuddled up with his dad. he was asleep in five minutes.

that dang kid!

but we love him like crazy and wouldn't trade him for anything else in the world :)

happy 21 months orion!

appt update

2008-11-19T23:29:00.000-08:00

orion's cardiology appt went well! he is looking great, and the doctor took him off one medication. one less thing to worry about!!

since then though, orion's been pretty cranky, not sleeping well, and in general just fussy. he is still eating well and doesn't seem to have any issues with fatigue or breathing. we can't figure out what's going on. maybe he is about to hit another milestone or maybe some teeth are coming in. we are just waiting to see if we notice anything different about him or if he starts feeling better. i hope he gets better soon because his endless crying/whining is driving us crazy!

i also think it's time for me to close the doors to tawny's kitchen. not my actual kitchen but the blog! i don't post often, and i seem to be struggling with too many blogs anyway :) i can barely keep up with the aye team let alone the others! so, since i am usually the one who posts on here, i will probably just fit in some of my own personal stuff into the mix. i AM part of the aye team right?! and somehow, bo and orion fit into whatever i'm doing too :)

currently, i'm on a cooking high. well, whenever we are in the hospital, all we do is eat take-out or food that our family has cooked for us or brought to us. as much as we love eating out, sometimes it's just nice to have a home-cooked meal! since being home (can you believe it's only been one month?), we are just scrambling around trying to get to appointments, or prepping to go somewhere. it's tough to have a nice, hearty meal. so, most of the time, i make quick meals from easy ingredients picked up at trader joe's. BUT, i still miss the "cooking from scratch" deal. hence the new cooking blog, needing some inspiration from friends and family, and frankly some new ideas other than my usual chicken dish (which by the way bo says he can eat everyday - reminds me of that everybody loves raymond episode and lemon chicken).

it also doesn't help that orion is still on his high-calorie diet, and i'm ALWAYS at the store comparing nutrition facts looking for the highest content. this is not helping my figure!!! i am considering making two separate meals now so orion can have his fat, and bo and i won't! that just seems to tedious, which is why i still cook all the high-fat stuff for all of us.

i also spoke to orion's dietician yesterday. she suggested offering him pediasure for higher calories and more nutrients instead of the soymilk. funny, she said pediasure has no lactose in it, but i looked it up today and it does. i may offer it to him anyway. she also said not to worry so much about him not eating his starches or vegetables, but to just keep offering them to him. even if he refuses to eat it, he knows it is part of his regular diet if we routinely put it on his plate. he will eventually eat it. we think he must be going through a phase because before, he would only eat veggies and rice, and no meat. now, all he wants to do is chow down on meat! he is following his dad's footsteps.

anyhow, i have brownies baking in the oven, but i think they are going to be a disaster. even dinner last night was a disaster. i'm having some pretty bad luck cooking this week. hopefully things will improve by thanksgiving!!!

haven't posted in a while, been busy!

2008-11-16T23:23:00.000-08:00

it seems blogging stops when we get back home from hospital days. it's hard to keep up when orion keeps me so busy! he's been doing really great at home. he just got his flu shot and RSV shot on friday. he was terribly grumpy for about two days, but he's back to his cheery self again.

today we visited beautiful moriah at lpch who just had her second open-heart surgery on friday. this is a sweet family i met through a heart forum. i was drawn to her mother victoria, when she sent an email out asking for support and advice after she found out prenatally that her daughter would be born with pulmonary atresia. PA is a more rare heart defect (it seems most kids are either tetralogy of fallot or transposition of the great arteries). anyway, i forewarned her and sent the longest email i've ever typed in my life. since then, i have always tried to keep up to date on moriah and her health and progress. it was great to finally meet them in person today! they are such adorable family, strong-willed and so much faith. we will be visiting them more often while they are up here and hopefully when we move down south we can have some playdates!

victoria, orion, and me

orion was pretty freaked out going into moriah's room. the beeping definitely triggered some memories, so he did not stay for long. he was really sad and clingy :(

but some happy stuff today! he's been really into giving kisses on our cheeks. i kept saying "awwww!" it was so darn cute, he started to kiss our chairs. we were cracking up, and he started to do it even more, i had tears in my eyes and a stomach ache from laughing so much. he is so adorable and we are loving this stage of so much discovery. they grow up so fast!!!!

also, my friend nik and i started a cooking blog :) she is a sweet neighbor i had back in irvine. we'd always see each other walking the doggies, and we soon became friends. check out our blog!

cooking with family and friends

we have several members already, and it's just a place to share recipes with our family and friends. she has some awesome recipes, lemme tell ya! she's got quite the hand for baking, and i can't wait to try out all her other meal recipes. if you're interested in becoming an author, let me know and we will invite you!

tomorrow, orion has a follow-up with cardiology. we dropped his lasix dose from 3 times to 2 times on friday, so we will see what the doctor says. i think he is still peeing the same amount though and still drinking like 40oz of water a day! will post an update after the appointment :)

orion dancing

2008-11-15T23:42:00.000-08:00

i wish you could hear the music better! he loves to dance to his favorite song: a-punk by vampire weekend :)

i can't figure out how to embed the video in our blog, i will ask bo later. but for now, just click on the link! turn up the volume!!

halloween fun!

2008-11-01T00:34:00.001-07:00

so much fun being pirates! we paraded around LPCH for their halloween festivities. we arrived a bit late, so we caught the tailend of the celebrations. orion got some coloring books, crayons, bubbles, and a pumpkin just his size. he had so much fun, but it took a bit for him to get into the happiness of it all. so many kids and parents in costumes, it was quite overwhelming for our little boy.

we visited the heart center to say hi to all the nurses there. orion led the way into the heart center and went straight for his favorite toys. we were ready to head up to the third floor, but he insisted on sitting down at the kids table to color. we had to pull him away and he tried to fight it, but i lured him with a kit-kat (i know, awful).

we got to the third floor, and right when we got to the double doors to enter the cardiac unit, you could see some major poutage on his face! he was so sad and kept pointing to go the other direction, but we saw one of our favorite nurse practitioners and wanted to say hi. he clung on tight to dad as we walked through the halls towards the nurses station to wish happy halloween to the rest of the team. he was pretty scared, so (again) i lured him with candy (bad mama!) and he grabbed a kit-kat!

we left soon after and headed back down to the first floor and played in their georgeous courtyards. orion ran around and watched kids chase each other, and we had a nice little impromptu photo shoot. lots of pics being posted to flickr, i will let you know when they are all up.

after the daytime fun, we headed to anson's friend daniel's house for some nighttime fun. lots of kids, lots of yummy burmese food along with pizza and snacks....orion had a blast running around with the kids. it makes me feel really bad that he doesn't get to see kids often and play! i need to start socializing him more and treating him more like a "normal" child than a child with special needs. sigh....

so we all headed out for some trick-or-treating, and the first few houses were quaint. then we got to the street with spooky decorations and haunted houses. orion became weary and was holding onto dad tight with clenching fingers! it finally got to him when he saw a talking and singing skeleton, and down came the tears. awwwww after that, we just skipped most houses and made our way back to daniel's. orion dug through their candy bowl and kept taking out tootsie pops and handing them out to everyone. there was even one dad there who kept asking for a tootsie pop, but orion wouldn't give him one. i wasn't paying attention, but the man then picked up orion from under his arms!!!! i freaked!!! i was like, "you're not supposed to pick him up like that!!!" in my mind, i was thinking, what stranger picks up someone else's kid? don't they remember toddlers have stranger anxiety? anyway, the man quickly apologized and said he should have asked first. then i explained his body is recovering from surgery, and that was that. it was great to see orion did not feel any pain though, but wow, it sure caught me by surprise.

anyhow, we are home now and orion is safe in bed. he is pooped!!! i hope he sleeps well tonight - and in his own bed - so mama can get some good sleep too.

wow it's been a whole week since our last post!

2008-10-26T01:04:00.000-07:00

obviously orion has been keeping us busy! he is doing much better now. no more crying spells in the night, and he's sleeping much longer too. he used to wake up a lot in the middle of the night, now it's only a couple of times. AND he's sleeping in his own bed too, but only for the first half of the night. at least i get more bed space for a few hours :)

we've had quite a week! i went to a rummage sale and picked up an awesome early christmas gift for orion! and this is no ordinary rummage sale either. all the money goes to LPCH, so i know i am doing a good thing by buying more "junk" that we don't need in our house hehe. they have this sale once a month, and i have gone a couple of times before. stuff there is dirt cheap. i mean really, you can't go wrong with kids books for 10 cents or a nice radio for bo's office for 2 bucks or a lasagna dish i have been needing for only 75 cents! ok ok. on to orion's special gift: his very own kitchen!!!

he loooooooooves his kitchen! he goes through all the gadgets, loves putting things away, taking things out of the cupboards...he can spend hours in his little kitchen. he is definitely happy to be home.

we are also getting our home set up for halloween. i made decorations and placed them in our front windows, front door, and i still need to make a hanging decoration to put outside. we walk through our neighborhood daily, and he just loved looking at all the houses decorated with fun halloween things, so i thought he would enjoy it at home. i bought a pumpkin today too, hopefully bo will carve something cool :) we are still trying to figure out our costumes. i think we will spend tomorrow finalizing it. as for halloween day, we are going to LPCH for their festivities. we know everyone there, we know it's a safe place, AND they will offer much more than just candy! lots of games and toys will be so much more fun than candy for little orion.

semone and dennis are visiting this weekend. they came by this afternoon and we enjoyed some greasy, fatty lunch that gave us food coma while we watched a movie with our projector. orion didn't enjoy the movie so much, he wanted to play two guitars at the same time instead :)

he is happily asleep now, and i think i've caught up to all the chores i can manage for tonight. i am ready for bed! good nite!

Too much energy

2008-10-18T19:36:00.001-07:00

Orion is loving life post-Glenn. TONS of energy, amazing appetite, and
all the time to play! This kid doesn't sleep! He's definitely keeping
mom and dad very busy.

He is not having as many crying spells as before, but he still wakes
up from naps and sleep with panic. It takes a good ten to fifteen
minutes to snap him out of it. Other than that though, he is a joyful
kid.

I think bo and I are finally caught up on sleep and back into the
routine of things. I FINALLY went grocery shopping today (it seems
like forever) so we had some homecooked comfort food tonight.
MEATLOAF! Orion ate nearly one slice, apparently he likes ground beef
now!

He's now yelling at us to put his shoes on. Gotta go!

Orion got his chest tube out!

2008-10-14T17:42:00.000-07:00

Orion got his chest tube out and he's as happy as ever! Looks like we are going home tomorrow!

Orion happy on morphine (given for the pigtail/chest tube removal).

Shoving the whole square in my mouth

2008-10-12T22:16:00.000-07:00

All mine

2008-10-12T22:13:00.000-07:00

J-E-L-L-O

2008-10-12T22:11:00.002-07:00

doing good!

2008-10-12T22:11:00.001-07:00

orion hasn't had much drainage today! and they weaned him off of
oxygen, and he's been on room air since this late afternoon. his sats
have been in the high 90s, even 100 at times! i took a picture because
it just seems so strange to see him at 100. but that's great! i'm glad
the weekend is over. our cardiologist will be back tomorrow and it
will be nice for him to see orion. i hope tonight goes well and that
we are closer to getting this tube out and home. orion is still
nervous being here, even when tina came he cried most of the time! :(
though she IS a doctor, orion doesn't know that and she was sad that
he was scared of her. she brought some delicious vegetarian vietnamese
food (i didn't tell bo she was bringing veggie style) and he was like
"wow, how did they get the bone out of the duck? tina gave in, she
couldn't not tell him. it was scrumptious nonetheless. orion ate a ton
of it! he had some of his own dinner of chicken noodle soup and jello
first, then ate a bunch of fake meat. i will post some funny pics of
him chowing down on jello :)

ok, time to get my coffee so i can stay up with O and bo is going to
get some much needed rest. more tomorrow!

Room air, deep sleep, 100% oxygen!

2008-10-12T21:59:00.000-07:00

we will be here a little longer

2008-10-12T17:17:00.001-07:00

the photo of meds previously posted were just his 8am ones. a lot. at
home, we split them up, so he won't get so many at once, but they like
to give the once-a-day ones in the morning. there are also a few extra
thrown in there that he doesn't take at home: calcium, colace,
aldactone, etc. he was so mad at me for giving them to him. sigh...i
hate being the bad one! but it's easier if i do it than the nurse.

i missed rounds today, but bo gave me the update. the team wants to
keep the chest tube in for a few days longer until there is no more
fluid draining. just yesterday, 24cc's drained. that's almost one
ounce. so their plan is to watch the drainage, take the tube out when
it's all done, modify his lasix dose and watch him for a couple of
days to see how he does. that will also help them figure out a good
dose for him to go home on. so it sounds like another week for us. i
knew the quick discharge was too good to be true! orion likes to keep
us on our toes :)

so....nothing else new to report. he started eating today, only after
he dropped a major poop bomb! empty tummy's gotta get filled up. he
only ate breakfast though and had no desire for lunch. maybe some good
vietnamese food that tina is bringing for dinner will entice him to
eat!

bo and i are both pretty exhausted. last night, bo left to run some
errands, and nearly 2 hours later, showed up in our room. i asked
"what took so long?" his response? "i fell asleep in the parking lot."

oh and mami adame: thank you for the cupcake offer! we will be
somewhat near-neighbors one day, so maybe we can have a cupcake-baking
party and the kids can have fun decorating :)

Morning meds

2008-10-12T08:56:00.000-07:00

funny dad

2008-10-11T21:20:00.001-07:00

bo actually pulled orion's chest tube out! well, not out of his skin, but the connecting part of the tubes separated. drops of red fluid dripped down the crib and onto the floor - yikes! this was after we have been waiting hours to "save up" some fluid in that tube to be taken out and tested. this fluid is collected in a box that has measurements marked on it, and we were trying to save a few drops in the tube before going down into that box. so after that, we had to wait some more. haha, that's what he gets for making fun of me the last surgery when i accidently kicked over that collection box. at least when i did it, nothing spilled :)

so onto orion....he is absolutely miserable! he still won't eat, only wants to drink apple juice, and only mama can hold him. he likes when dad is around to play with, but when it's time for comfort, it's gotta be mama. so i'm tired. sitting in uncomfortable chairs holding a 20lb kid does a number on my back. but as long as orion is happy, i'm ok with it. the team said they still want to keep an eye on the drainage for a couple of days, so maybe that means it can come out on monday? i hope so because we need to get home and back to normal life! orion is already at an age where he can use his imagination. which means he most definitely remembers experiences in the hospital and probably has real nightmares about them. SO SAD. he gets so hysterical now. it's not just tears, it's full on screaming, crying, turning all over in the crib trying to get away, just at the sight of a nurse. he gets so angry, and sometimes we think he's mad at us too, because he knows we brought him here :(

today was a good day though, we got moved back to 3 West, which is the unit we are always in, and it's usually cardiac patients. awesome kathy and her fam brought delicious dinner from a place i've been dying to try. it's right near our house, so now we'll be walking there regularly to get our italian fix! she was also sweet to bring us goodies for breakfast, and lizzie brought crayons and coloring pages for our little man. i was hoping orion would cheer up to see his buddy, but he had none of that. he was pretty sad the whole time. after they left, he really threw a fit, and that was that. he wore himself out and now he's fast asleep.

maybe on our way out of this place, we will celebrate by stopping at the stanford mall to pick up SPRINKLES cupcakes. that is a great idea, don't you think??? hopefully we will be home before bo's birthday on wednesday!!!!!!

rest

2008-10-11T07:12:00.001-07:00

after getting the chest tube in, he woke up fast and was definitely ready for some grub. we had to wait until xrays came back fine and getting the okay to go back upstairs. he cried the whole way, but once he was able to get some juice in him, he settled down quickly and is now fast asleep.

the tube is outputting a good amount, not a whole lot but enough. this is a nice definitive way to do it, and it's quick too. we don't have to go with the waiting game of using diuretics and hope that it works. this way orion can get comfortable faster and back home.

hopefully we won't need to be here long. saturday will probably be just a day to watch the fluids come out and hopefully by sunday we can go home?! i'm making my own agenda :)

orion still hasn't gotten any pain meds yet, we are waiting for the cardiologist to come in and look at him. hopefully we can get some to him before he wakes up so he's not too uncomfortable.

will post more as things progress.

Whoa already done

2008-10-11T05:51:00.001-07:00

He's already awake we are going in

Getting chest tube put in

2008-10-11T05:43:00.000-07:00

We are down in cvicu. He's in the treatment room while we are sitting right outside the door. They sedated him with kedamine, and he totally zonked out. It should take 15 minutes and he should wake up about 20-30 minutes after they're done.

Honestly I'm a little bothered that there was some disagreement between the surgery team and cardiology team. If the ultimate decision is dr reddy's, then after a decision is already made by him, why is the cardiologist and NP telling me that they don't think it's necessary? It set us up to believe that the communication between them is poor and they go against dr reddy's decision.

Anyhow we absolutely trust dr reddy's decisions and know he chooses them for the right reason. If he thinks this is the bestvway to get all that fluid our, then we agree too. It just stinks for poor little Orion to have to go through another procedure so soon. But hopefully this will fix this problem fast and we can head home again.

Prayers to Orion that he will come out of this procedure okay.

Correction

2008-10-11T00:36:00.001-07:00

Ok I didn't realize pigtail and chest tube are the same thing. Also the cards fellow doesn't think it is necessary as does the practitioner so they are trying to convince the surgery team to possibly hold off and see how the lasix does. Since Orion has been so fussy and only feels better with a bottle, he has drank a ton of juice. Docs don't like fluids in body when he is sedated, so now if they do put in a chest tube, they may wait until morning.

As for me I am tired but am holding Orion since he doesn't want to be anywhere else. Just staying awake watching spiderman 3. Drama!

Going down to ICU

2008-10-10T23:22:00.000-07:00

Dr reddy wants a pigtail put in and a right chest tube. Policy is to draw blood twice then go down to ICU since it is a more controlled environment. He will need to be sedated. We will be heading down around 1am or so.

Poor Orion!!!!!

He is going to be even more miserable :(

Sound asleep

2008-10-10T22:59:00.000-07:00

Sleeping on mama

2008-10-10T22:34:00.000-07:00