What's up with Owen lately...

It's about time I sit down and write a post on what Owen's been up to lately. The little guy is almost 28 months and he is constantly changing, growing and learning new things!

Up until a couple months ago, Owen wouldn't watch a stitch of television. Then "Yo Gabba Gabba" was the magic ticket to occupying him for 30 min so I could get a thing or two done around the house. I have to say, he dumped his friends Brobee, Toodee, Plex, Muno and Foofa in just eight short weeks. He's moved on. He has a new friend. He's furry and Red and Owen refers to him as "Mel-Mo". I can put in a 90 minute video and Owen is as happy as can be!
Owen stands up everywhere we go. He watches TV standing on the couch. He stands in his stroller. He stands on the stairs. He stands up in bed. He stands up at the sand or train tables to play. He doesn't stand without leaning on something, but he IS standing. It's about time he figured out that legs are meant for standing.

When he gets tired of standing, which is usually after a few minutes, he simply lays down his head or plops onto his bum. Usually he's slide off the couch onto the floor and start scooting, or he'll just lay like this for another 30 minutes while he recharges his engine. When he's in his stroller (which is when we go anywhere), he's been asking to "uh-ooott" (butt-scoot) and I usually have to tell him "not a chance!" The ground is filthy and I just can't get over how many germs are on the floor of a restaurant, the dance studio, the grocery store or anywhere else we happen to be.

Owen has had a super appetite lately. Before you get too excited... his eyes are bigger than his skills. When we sit down to eat, he usually ends up stuffing food in his mouth faster than I can stop him (not that I would stop him), but his cheeks end up stuffed like a chipmunk and he has no idea what to do with the food from there. I have to scoop it out as soon as he is good and ready. When he does pace himself (one bean, one string of cheese, one bite at a time), he can chew it and swallow it pretty well. He drinks like a champ (when he wants to) and always calls his drinks "wa-wa", no matter what it is.

We're going to keep working on mastering his oral skills this summer. His OT brought licorice the other day and we had him chew it 5x on one side and then switch. He has a great big bite and does a great job at chewing, he just doesn't have the chew, swish and swallow down yet. I'm hoping that if he can figure that out, then eventually, this boy is going to be a GREAT oral eater!

Here he is using his tongue to push all his food into his left cheek. This came after he bit the heads off of about 10 goldfish and threw their tails in his dumptruck. He kept pushing the goldfish into his cheek and 30 minutes later, I finally scooped out a pile of orange soggy crackery goo.

Owen's speech has taken off lately! Finally, he is initiating conversation a little more so that I don't always have to prompt him or ask him questions. I know he's a guy, but come on.

The other day we were grocery shopping and I blame Owen for going way over my budget. He was actually asking for food as we passed things... crackers, milk, juice, bacon, bananas.... he had to hold each item as I put it in the cart. I was so amazed that he was talking so well and having so much fun shopping that I gave him everything he wanted! Thankfully, all he knows is healthy food and so we're eating well this week.

The other day, Owen's developmental specialist came by for Early Intervention to talk about his therapies and progress. We made new goals and she brought up preschool for next year. My initial reaction was "no thanks." Kamryn never went to preschool and she turned out great! I can't imagine sending Owen to preschool. He doesn't walk, he's on oxygen, he has feeding tubes, he's my baby, I would miss him. No way. Call me crazy, but I think we'll wait until he's about 5.

Speaking of all the oxygen, tubes and cardiac stuff. I got a call from LPCH (Lucile Packard Children's at Stanford) this week and they tentatively scheduled his cath and visit for October 18-20th. I'm totally nervous for this one. Maybe I'm nervous to fly for the first time in 11 years, alone with Owen, and a portable oxygen concentrator that I've never used before. I'm afraid his oxygen saturations are going to plumet while we're in the air and I will panic.

Ok, I'm sure it will be fine. I'm just over-reacting. I do that.

Owen had a really rough week after vacation. He hasn't played much, no crawling upstairs, lots of "hold me" and "bup" (upstairs) and "beee" (binki). He's laid around in bed and watched too much Elmo. I ask him if he's tired and he shakes his head yes. I give him lots of choices of fun stuff to do and he says "no". We listened to music on the laptop and read books.

Today.. he is feeling more like himself. He's still not back to where he was a few weeks ago, but hopefully he's get there.

I'm still blending all his food and he loves it! I learned today that raspberries and Gtubes are a bad combination. Those little seeds are like rocks and clog the tube. So after a Gtube change, he was a happy camper and says he likes his new tube. The tube is our livesaver and I'm sure we'll have it for years to come.

Owen's oxygen saturations continue to be all over the place. I adjust his oxygen pretty often, but as long as he's not blue, we're cool.

I've been thinking alot about my conversation with Dr Rosenthal a couple weeks ago. He said that at some point we're going to have to look at Owen's quality of life. He has been "stable" for a year and a half now. Stable enough not to list him, but obviously requiring much support to sustain him. At what point do we say "enough is enough". We surely don't want Owen as a five year old on oxygen, feeding tubes and exhausted climbing a flight of stairs... that's just no way to live. I don't know when to make that call. That's why the cath will be a good indicator of things in October. It will be exactly two years from the date that we were first told that Owen would need a transplant. Since that day... he has remained stable, increased his medications by massive amounts, and worked on his development.

He still has a long way to go to catch up with other kiddos his age, and may not with his failing heart. All we can do is celebrate how far he's come and we know he'll be thriving one day!!