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.


daddy helping out on the tricycle

skateboard break


chalk fun with johanna

i look gooooood!