Tuesday, December 21, 2010

winter


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!

Thursday, September 16, 2010

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

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!

Friday, August 13, 2010

heart update

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 :)

Monday, May 10, 2010

Orion's Heart

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!

Monday, April 26, 2010

memory lane

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???

Tuesday, April 20, 2010

Heart Homies

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
Photobucket

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


Owen Simmons - will be listed for a heart transplant
Owen's Button

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

Tuesday, April 13, 2010

she & him

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

the best yet the worst

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 :)

Wednesday, April 07, 2010

bo's feeling better

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!



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!

Wednesday, March 31, 2010

when worrying is not an option

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.

Monday, March 22, 2010

sick going on 8 months now...

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!

Monday, February 08, 2010

kool aid play doh

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.

Wednesday, January 27, 2010

tantrums continue

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 ;)

Sunday, January 24, 2010

grandma withdrawal

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 :)

Friday, January 22, 2010

some recent photos


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...

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!