Friday, April 05, 2013

Orion and Blake update

Orion is now 6 weeks post op and doing fine. Lots of minor obstacles but all is good now. His incision site got infected multiple times, he had what drs think was a mini stroke which brought him to er, lots of blood tests and ultrasounds. He goes back to cardiology for a check up next month and we will talk about changing his meds. Overall his energy level is much higher. I recall a day where we spend the entire morning and afternoon on a school field trip to a farm (lots and lots of walking!) and when we got home he played tennis for a couple hours! He is still having night terrors but they are lessening. He's happy to be back at school and having play dates to keep him busy.

Blake has been sick with a cold forever (me too) so he is mostly whiny and clingy all day long. He likes to fight sleep. He would rather spend his time eating. Now a year old, he knows so much! He's a good talker (mama, dada, brother, more, bird, car, done, Elmo, big bird) and he signs a lot. He understands sample commands (clap your hands, get your shoes, dance, jump) and he answers yes by vigorously shaking his whole body up and down. Sometimes I forget to play games with him like "where's your nose?" etc maybe because I forget he's still a baby?? He seems like such a big boy to me. So today I asked him about different body parts and I was surprised he knew so many: hands, feet, nose, mouth, ear, head, penis :)

Thursday, February 14, 2013

We are going home soon, What a difference 5 years makes.

Orion's cath yesterday was a success. The Melody valve was placed successfully, and the result was a pulmonary valve with little-to no leak (about the same as you and me). Needless to say Tawny, I, and Orion (once O fully recovers), are ecstatic at the outcome. Just only 5 years ago, when Orion got his pulmonary value placed, there was no option but open heart surgery. Now after two days at the hospital, Orion already seems back to his goofy self and is about to be sent home.

pwa pwa a

-Bo & O------------------------------^^

Wednesday, February 13, 2013

Orion in the OR, we are waiting and hopeful.

It's been more than a year since we blogged, not a coincidence, Blake is already more than a year old. He's been a handful of energy, mischief, and ruckus, and we couldn't enjoy it more. But alas, between the two little rascals, it leaves us with no energy todo anything else. We do take solace in knowing its only temporary... or at least tricking ourselves into believing it, cause Orion mellowed out at 5. Orion is a smart, silly (after next week) six year old, in kindergarten and is a very very sweet big brother. He is thoughtful and still has his obsession with planets, but has branched out a little to jellyfish and ocean creatures (which really isn't that much different from space exploration). Blake is also sweet, but much more brutish. He is walking, but will do a full speed crawl, with his heads down, to get where he wants to go, ultimately hitting his target full speed with the top of his head. He is obsessed with the roomba, Mickey, board books, and cars, and is bent on destroying anyone of those things. They are so great to watch together, and I am so happy that I can easily see them becoming as close as my siblings are.

For the last year or two we have been on edge, watching Orion's energy level and echocardiograms get more and more affected by his leaky valves. So last echo, a few months back, we (the doctors and us) decided that it was time to do something about them. We have been waiting for Orion's weight to get to a threshold where he can get his a pulmonary value placed via catheter; it's a two day hospital visit, as opposed to up to 5 weeks with a open heart surgery. He has been on the bottom limits of the acceptable weight range for this operation for the last year and half, and being in kindergarten and catching multiple colds and flus, his weight has not changed. We did not want to keep him out of school because he loves it so much: it empowers him socially, and mentally, helps him grow emotionally by leaps and bounds, and a side benefit gives mommy a little bit of peace with only one kid to care for for a few hours. He loves school so much he skipped bring your child to work day at Google this year. These benefits to us out weighted the risks. So he has been the same weight... and so we decided that waiting longer and allowing him get worse would be futile. His quality of life is ok right now, but will soon get worse, and could be so much better. We went a head a scheduled a cardiac catheterization to make a plan and attempt to fix one of his leaky valves.

Today is that cath and I just rolled him into the OR.

The plan is to take precise measurements and pictures of inside and around his heart. Then, if he's big enough, they will place the melody valve. If he is not big enough for the placement, the cath will provide detailed information to allow the surgeons the best plan to do a more invasive valve replacement. If he is big enough (or rather is arteries), he will get a series of stents over where is current valve is. The first over his current valve and to slightly expand the area. The second to expand the folded valve in place. Within 6 weeks, his cells will grow over the stents and valves and he should have little problems with it.

So that's where we are now, waiting to hear what the next step is, waiting for orion to get out of the OR. In the past we have gone home the same day, as well as a separate time, encounter strokes and seizures. So we have see the best and worst outcomes and they all sit in our minds. After talking to the cath surgeon, we are hopeful they will be able to place the valve and are looking forward to getting our happy quirky little guy back (after the anesthesia wears off, of course).


Sunday, October 02, 2011

Fun Fun Weekend

We started our Saturday morning with some tennis. I HATE sports. Well, maybe I shouldn't say hate, more like I've never been introduced to sports as a child. I actually had fun (!) and so did Orion. Here he is pooped out after lots of ball chasing.

After tennis, we headed to one of our favorite restaurants Calafia. It is owned by the original Google chef, Charlie, so you know the food is good.

Orion got a tofu scramble with spinach and mushrooms plus hash browns and toast. He requested tofu scramble. He only ate the hash browns and toast. This kid hates bread!! I think he liked the super crunchy texture.

This picture of him makes him look so skinny!! He lost some weight after the couple of colds he was battling.

After lunch we headed to a playdate for all the preschool kids in his class. I was too busy meeting all the parents I did not take any pics.

In the evening, we went to Orion's friend's school that was holding a carnival. He played a few games, decorated a pumpkin, and did spin art. Love kids arts and crafts!

Tuesday, September 27, 2011

Growing Up In A Week

Orion's gone from being so shy and having separation anxiety during his first weeks of preschool to saying "I love you, teacher" and giving her a kiss :)

He is FINALLY sleeping in his own bed!!!!!!!! It only took 4.5 years but we did it. He has one of those ikea reversible beds and promised he'd sleep in it if we put the bunk on top. I cushioned it with about a billion pillows just in case. Even though we will find him wandering into our bed at 3am, I am still so happy I don't have little feet kicking me all night long. The only problem I have now is that I'm too anxious to know if he is ok in his bed. I feel like a worry-wort all night. Then I finally end up falling into a deep sleep and don't wake up to change his diapers. His clothes and bed are usually soaked by the middle of the night (bad mommy).

Our forward-facing boy :( We tried our best to keep him rear-facing as long as possible. At 37 inches tall and 30 pounds, he was finally reaching the maximum height on his Britax Boulevard. I even tried to find a taller carseat to keep him rear-facing, but no such luck. So here he is with a big grin on his face sitting in his forward-facing seat for the first time :)

Getting the old infant carseat out to see how it fit's in our car. Orion had to make sure to try it out first :) Yup, he's gettin big!

And this is what he loves to do all day everyday!