Tuesday, November 25, 2008

orion is officially SICK.

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!

Monday, November 24, 2008

back from peds

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!!!

Sunday, November 23, 2008

getting a bit better, but nothing drastic

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!!!

Saturday, November 22, 2008

long day at the hospital!

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!

Friday, November 21, 2008

happy 21 months orion!

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!

Wednesday, November 19, 2008

appt update

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!!!

Sunday, November 16, 2008

haven't posted in a while, been busy!

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 :)

Saturday, November 15, 2008

orion dancing

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!!

Saturday, November 01, 2008

halloween fun!










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.