Encore Une Fois: Surgery

How do we manage to get ourselves through today, any day, weeks, years? Of course, much needed get aways. The vacation with my cousins and Aunt Lenore and Uncle Vic in Hilton Head was wonderful: the smell of coconuts, warm beach, exploring a new place, yoga everyday, long hot showers, the sweet sound of kids' laughter (and meltdowns;). So today, we're making a break in our minds. More precisely, I'm playing mind games. This is my weapon of choice and my strength to get me through another surgery for Lewis.

It's 5am and we have a sitter coming in an hour to hang out with Nate while LJ prepares for Strabismus Surgery to correct his eyes at 7am. We hope the medical experience breaks a record and has him home and comfortable by the afternoon!

Think good thoughts for LJ please.

Edited 1:45pm LJ’s operation is completed with no problems and he’s home now, sleeping. He is apparently in no pain although he looks like he got punched in the eyes. His eyes look better (not crossed) but it will take his brain a number of weeks to figure things out and give him better sight. The doctor thinks he will likely have to do another operation later to fine-tune the results of this one. Thanks for all the well-wishes and positive thoughts!

Vacation in Pictures

Off To the Beach

It was a good week PT, OT and ST-wise. LJ did great in Aqua Therapy. I have a few things to work on now when we get to the pool. On land, Lewis also held the crawl position for 45 seconds...three times! He has also started overcoming his oral aversion with me giving him rice cereal as well as a teething toy in his mouth for a few consecutive days now. Next step is a swallow study at the end of August. I'll be away from this space for the next week or so while we go on our vacation with my cousins' families and my aunt and uncle.

This is the best thing we will have done all year since Lewis was born, as it's pretty much a week of playing in the sand, riding our bikes, yoga every morning, cooking great meals, reading, unplugging... and, well just generally hanging out.

And really, what could be better than that?

Have a great week! We'll update the blog on Monday, July 27th once Noodles' eye surgery is underway.

Bits and Pieces...

Uncle Jon is coming to visit today! This has inspired me to bake something for dessert tonight. So in addition to the standard bread chronicles I thought I'd show off the Chocolate Chip Peanut Blondies we made. Just writing about them makes me get a sugar high. But we are going to serve them with vanilla ice cream and chocolate sauce on top....because Happy Weekend to us! Mmm, all so good. Heaven.

I really don't know where the week went. The summer always seems to fly by much faster than the rest of the year. We had a follow up appointment with Dr. GI. There was granulation tissue around the hole so they burned it off with a silver nitrate stick. The nurse said it didn't hurt Noodles, but we'll let him be the judge of that. Hopefully the button will fit better now. And drumroll please! I changed his tube/button ALL BY MYSELF. With the nurse's moral support of course. But I did it. No more trips to the ER. The biggest lesson I learned was not to let him pull it out right after a feed. (Note to file...there's lots of oozing stomach contents). Props to me:)

We also got brave and attempted a trip to the pool. (I'd be most happy if this activity could occupy most of my time these days.) Didi met me there to help with the boys. We split up and I was an old hat to Nate anyway, so Didi went swimming with him in the big-kid pool, while LJ and I rocked out in the baby pool on his new baby boat pool seat. He wasn't a happy camper at first but once he got acclimated to the water he relaxed for about 45 minutes.

I'll skip over therapy since PT, ST and OT weren't that great this week. We'll chalk it up to just being an off week. He's gained 1 pound in the last month- fatty now weighs 16 pounds and 4 oz. But next week we are going to Dr. Pediatrician and Dr. Pulmonologist and a pre-op appointment for the eye surgery. In addition, we are trying out Aquatic Therapy with Noodles' physical therapist. So that's what we're up to. I'm a little worried about next week, but we'll get through it.

Milestones....

Happy 4th of July. We're all doing just fine. I might even venture to say we're doing great, which sort of shocks me a little bit, since we were unable to say that for so long.

LJ's gtube has stayed in pretty well for the last week. A few days ago we got a foam "donut" that goes around the button on his tummy and helps him sleep on his stomach - which he's done the last three nights. Even better, Lew has slept through the night the last couple of nights. He's still fussy and demands to be held a lot of the time, but he's also smiling more and more and making lots of happy noises. The other night, he spent an hour on the activity mat cooing and smiling and watching the Nats game with Bop. It is so fun to see his little personality coming to life.

The gtube is almost second nature now. It has its challenges, but it is certainly much better than the NG tube. It is occasionally a little embarassing when we have to feed him out in public...but we just go about our business and if curious onlookers ask questions we try to educate them. Sometimes I even attempt spoon-feeding him some applesauce or sweet potato baby food-somedays it's harder then others. I'm waiting for him to just explode with possibilities in the next few months. I'm excited yet at the same time it's bittersweet.