Saturday, November 14, 2009
Thursday, August 20, 2009
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 :)
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.
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!
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
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.
Wednesday, June 24, 2009
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....
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!!
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.
Monday, June 08, 2009
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!!
Sunday, June 07, 2009
Metric - Help, I'm Alive
Phoenix - Lisztomania
Some Oldies but Goodies:
The Cure - Just Like Heaven
Weezer - Buddy Holly...
Bo's new glasses:
Mary Tyler Moore's hair:
A close up of tawny's mother's day necklace:
Saturday, May 23, 2009
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.
Friday, May 08, 2009
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 :)
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!!!
Tuesday, April 28, 2009
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 :)
Wednesday, April 22, 2009
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!
Saturday, March 14, 2009
Friday, March 13, 2009
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.
Tuesday, March 10, 2009
Thursday, March 05, 2009
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....
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!!
Wednesday, February 18, 2009
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.
Saturday, February 14, 2009
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.
Friday, February 13, 2009
Thursday, February 12, 2009
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?!
Wednesday, February 11, 2009
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 :)
Monday, February 09, 2009
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%.
Saturday, February 07, 2009
Thursday, February 05, 2009
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
Thursday, January 29, 2009
maybe that's why it died on me! orion's been messing with it!!!
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!
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.
Friday, January 02, 2009
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 :)