Thursday, June 26, 2008

Father's Day, Trip Down South, and the countdown begins...

Wow, two weeks gone, three and a half weeks left until Ori's surgery! It's funny how our calender is based on how far away Orion's surgeries are. Its almost like school where you have no idea what month or day it is but know exactly how many weeks or days until schools out. Except in our case, its more apprehension than excitement. I'm sure time will become more apparent as O's surgery date approaches.



Father's Day: 


I'll start where tawny left off... Father's day was a blast! I got up early to finish my work so I could spend the day hanging out with the fam. We just lounged around the house, or rather I did, Tawny did her usual cooking, cleaning, taking care of Orion. I woke up to a bunch of surprises, new sandals, thin PJ's for this global-warming-summer-heat, and a spider-man themed bathroom! Spider-man was my favorite comic book growing up, and there was spider-man stickers, a hand towel, a soap dispenser AND a toothbrush-holder. (If you know tawny well, turning her cute decorated bathroom into spidey-land is ludicrous, that's the kind of sweetie Tawny is. ). Normally an adult man in a hetro-marrage has no control over the decorations of the only bathroom. If he were single, he still wouldn't be able to have this stuff—if a girl he brought home saw a total spiderman bathroom, she would most likely be out the door. Now I wake up to a nostalgic bathroom, sometimes I feel like I should brush on my knees to get the full effect! Then, for lunch, she made her world famous (my world) turkey burgers, and seriously these burgers are so good, I ate 2 full burgers with all the trim and one plain patty. The tryptophan kicked in and we all took a little nap. Then for dinner tawny was going to make mac and cheese from scratch, but the turkey overcame us and Korean food sounded almost as good and much easier. past Orion's bedtime we headed to eat at a Korean place in Sunnyvale. Good food, Noisy (which means kid friendly), and spicy, even Orion loved it until he started to get sleepy.



Our trip down south (check out our pics):


The next day we headed down south to visit all the extended family. While we were down there, tawny got her haircut, visited Anson (tawny's brother), Vincent (anson's son), Izzy (vincent's mom), Alice (tawny's sister), Mick (Alice's husband, and Marco (Alice and Mick's soon-to-be-born son). Alice is due in September and we hope to be down south and meet Marco face-to-face on his birthday. We also went to my little brother Stephen's graduation. He will be attending SFSU this coming fall, so congrats on a great job and getting the position of on-call peninsula babysitter. While we were there tawny, my sister and I also attended Dean and Negin's wedding. Dean is the older brother to my best friend Ali. We've been friends for over 16 years now. Sorry if we missed you while we were down there, we had a packed schedule.


Our short trip down south was packed and busy, but fun, and was also cut short by our first "family vacation." We went to Cambria, a little quaint town just south of Monterey and minutes from hertz castle. We really just stopped for a rest and checked out the little shops on main st. We stayed at the Bluebird Inn (the only place that accepts kids?!). We liked our hotel and out trip very much, and came back with decorating ideas for our apt, and a better idea of how to plan for a trip with a one year old. We hurried home the next day after arrival for a OT appointment Palo Alto (one in which the OT said we were doing exceptionally well and that she wont have to see us again, bummer we could have stayed in Cambria a day longer!). It was nice hearing from someone "professional" and with a badge that we are doing ok as parents, at least in Orion's eating department, usually we leave the therapy appointments thinking to ourselves, we don't do enough for you Orion! Hopefully we'll be back to Cambria in the near future, this time not so rushed. 


Today grandma and Stephen came up north to go through SFSU orientation, Orion had a blast as usual from visitors, and I  spent most of the day resting, trying to recover from a little Lupus Flare.



Our Next Three Weeks:


So far we've packed a lot in the two weeks after O's cath, and three weeks left are going to be concentrated on making O strong, getting him to say and understand a few more words, and hopefully walking or coming close to walking, (we keep getting set back for the last 6 months on this). Keep your fingers crosses and check back often!


Monday, June 16, 2008

the crank is gone

turns out all the crankiness was due to the anesthesia. cardio said it would take several days for orion to be back to his usual self, and the last couple of days have been much happier. yay, orion is back!

he is just non-stop blabbing! AND on the move! he's figured out how to sit down on his own now, so he loves to just stand up at furniture, sit down, stand up, sit down, over and over again. constantly smiling, happily eating, loves to mimic, and becoming more and more obsessed with katie melua.

today is father's day, i'll leave it up to bo to blog about it.

time for me to continue my day. it's midnight, and i'm still not packed yet for our trip down. yowsa!

Thursday, June 12, 2008

surgery is scheduled

we got the call from our cardiologist yesterday afternoon, shortly after being discharged. orion's surgery will be on july 18. we have to go in for pre-op stuff, so we'll be at the hospital july 17 at 730am. five more weeks! we are going to make the most of it until that day comes. spend a week in so cal with family and friends, i'd like to take orion to the beach since he's never been before, we are hoping to take our first "family weekend getaway" trip while we drive down.

since being back home, orion has been quite the brat. i think he's gotten used to all the babying, from when he was sick just a couple of weeks ago, then having his cath. he's also at that age, learning that he can be manipulative and also to say no (he only shows it by shaking his head, he doesn't actually say no). he goes into this hysterical whining, most of the time no tears, and it seems to never end!! it drives mommy absolutely crazy. hopefully he will get out of this stage soon.

some fun things he's doing: he understands a lot of words and phrases. if you say "brush your teeth" he'll use his finger and pretend he's brushing his teeth. he can point to his nose if you ask him to. if you say "kiss" he'll blow a kiss. he can now pull himself up on his own and also sit up on his own from lying down, but he can't sit down on his own. he does this a lot in the crib, so when it's time for a nap or bedtime, he refuses to sleep because all he wants to do is practice.

we've got many busy days ahead of us - orion is now getting physical therapy in our new county, and so far orion really like his new therapist (probably because he provided all of orion's favorite toys on the first day). we are having another heart babies of the bay meeting, so that will be fun. then it's father's day! we've got so much in the works, i really hope i finish everything by sunday! i better get to sleep so i can get a fresh start tomorrow :)

Monday, June 09, 2008

O's out, quick update

330 o went into the cathlab.

430 we got paged and our cardiogist came out to find us. He said o was
done. Can we say super-speedracer-fast!

Results: the pressures in his ra are still high, not alarming high,
but high enough that the load on his heart need to be reduced. So the
plan is to have a bidirectional Glenn done in the coming weeks. This
will reduce the load on the right side on his heart.

We will write more later... Bo

the next episode of o's heart

Originally we were scheduled to have his cath sometime next week, but Dr. Perry wanted to do the cath himself and since he will be out of town next week—and waiting until he comes back will be to far in the future—o's cath was moved up to monday at 1pm. 


The concern when o was admitted in march was that his pressures in his RA continue to be elevated despite the extensive repairs (placement of a big-a$$ pulmonary valve (19mm) and repair of the tricuspid valve and removal of the BT-Shunt). The fact that he took so long for his chest tubes to drain fluid, fluid collecting in his lungs, and a descended liver were a signs that his heart was not relaxing and that the load on his right side may be elevated. But, a threat from Dr. Perry (after two weeks of waiting for his chest tube to stop draining), "If his tubes don't stop draining over the weekend, well cath him on monday." one day later, o suddenly had no more drainage and a clear cough in a matter of days. so were we discharged  home with monthly cardiology visits. 


fast forward to now, the last two echo's have show o's atrial wall (where he still has a PFO) bulges into his LA. this could be yet another sign that his RA pressures are elevated. the only real way to find out actual RA pressures is in a cathlab with a pressure probe sitting in his heart. o's atrial wall has always bulged out onto the left side, but then again o always had a elevated RA pressure due to his anatomy and heart defect (but now that his anatomy is more "normal" is less-special, the pressures should theoretically be a lot lower). If the pressures are high, he will need another surgery—the bi-directional Glenn, depending on how high will determine how long we can put the surgery off (2 heart surgeries in 4 months is not ideal). If his pressures are low or close to normal, they will close up his PFO in the cathlab—further making his anatomy less special—and keep him overnight for observation (similar but more advance technique to this).


orion is currently only allowed to take clear liquids until 10 am, after that he is NPO. he has a cardiac cath today at 1pm. the plan is to arrive at LPCH by 11am, goto registration, be up at PACU at 11:30 am, have orion checked by nurses and doctors, then go to the cath lab at 1pm. This will be o's 4th cath in his 15 month career as a heart patient.


So we find out tomorrow: Will the doctors be bamboozled by the curving atrial septal wall that is actually o's normal anatomy (similar to his dad's strange EKG's that go off the charts and makes nurses reach for the defibrillators)? Will o need another surgery, if so how long will we have until the next surgery? How are all of o's repairs holding up. Will o become less special? How many cups of free starbucks coffee will tawny and bo drink in surgical waiting area? 


find out tomorrow on the next episode of o's heart. (tomorrow, we promise=)

Monday, June 02, 2008

the usual day

friends sometimes ask me what a typical day is like for me, so here's what we did today!

7:15am rise and shine, orion!

i brought him into our bed this morning to just hang out and relax with us. we were finally out of bed at 7:45am. we all brush our teeth together!

7:45am coffee for mama, breakfast for orion. he did not eat much this morning, so we moved on.

8:00am medicine time! and play time. reading books on the floor, practicing walking along furniture and walls while mama does computer work and washing and sterilizing bottles.

9:30am daddy has a doctors appt, wave bye to daddy!

10:15am orion takes a nap. time to tidy up and clean the apt.

11:00am orion wakes up already?! he usually naps for at least 1.5 hours maybe 2.

11:30am trying lunch since orion did not eat any breakfast. no interest.

12:00pm daddy's home. appt went well!

12:30pm family trip to target. my original reason for going was to pick up orion's vitamin drops, and we walked out of the store with everything else but that! so i have to go back tomorrow....we also stopped at trader joe's for some groceries then headed home.

2:30pm trying lunch again for orion. he ate everything! peanut butter sandwich and soy yogurt. he doesn't like regular milk or yogurt, so i decided to try soy and he was very happy with it.

3:15pm orion naps again. time for me to do lots and lots of laundry way overdue. i manage to get 3 loads done. in between laundry loads, i clean out the fridge, tidy up table, and peel and cut a giant watermelon. oops, forgot to give orion 2pm medicine, so he'll get it later.

4:45pm orion wakes up! cuddle for a little bit then head to the table again for a snack. he started out with some cheese and soy choco milk and finished off with watermelon.

5:30pm mama is getting tired and can barely keep eyes open. asks for a 10-minute nap which turns into a 45-minute nap. while i get some rest, daddy and orion play in the bedroom.

6:15pm mama wakes up with allergies! peek in the room and see daddy has also fallen asleep for a little bit while orion strums his guitar. i bring him out into the kitchen while i get dinner ready.

7:00pm we all sit down for a nice dinner. we still have leftovers from when grandma was here, so dinner is easy. orion eats two plates of rice and more soy choco milk. he dances to the dinner music (teitur!).

7:45pm bathtime! orion and i get in the tub with his blocks and foam alphabet letters and numbers. he sticks them all over the place, even on me, but sadly they do not stick on me. he starts to rub his eyes sleepily, so we finish up the bath. during bathtime, dad is setting up his new office area in our apt. lots of wires and equipment everywhere.

8:15pm daddy takes orion out and dresses him in pjs while i clean up. orion needs 8pm meds and he fights it. only dad can get him to take it without a fuss.

8:30pm mama cleans up orion's room while orion gets ready for bed. he seems to have a bit of trouble falling asleep on his own, so i hang out near his crib until he falls asleep.

9:15pm orion's asleep! ok, now it's time for me to clear the dinner table, wash dishes, wash bottles, make orion's formula for the night, and get his medicine ready for the next day.

9:45pm done with all orion's stuff! now it's time to fold the laundry, i never got to that. dad is still setting up office, so space is a little limited. i decide to blog instead.

10:37pm current time! i am finished blogging :)

will most likely just finish laundry and will try not to be on the computer for too long.

phew, where did the day go?! and that's how the aye house goes!