A Cheery Post

Post date: May 27, 2009 4:30:10 AM

Hello, all.

I thought I'd interrupt this litany of somber flashbacks with an update on how Connor is doing RIGHT NOW. And right now, he is doing absolutely FABULOUS!!!

He is his usual happy self. He loves taking walks around the neighborhood, playing with his toes, and he's just learned one of my personal favorites - giving kisses! They are the slobbery, open-mouthed, really-more-like-he-is-trying-to-eat-your-face-than-kiss-it kisses, but they are kisses and he does them on command. :-D For a while he was waving bye-bye, but has now abandoned that trick as old and stale. He's a total goofball and makes all sorts of funny faces. His hair is starting to come in too, but mainly in a strip down the center of his head. It's like he has a natural mohawk now.

Here's a picture of him with his goofy face and mohawk hair (ok, emphasized by us smoothing it into a point straight up!) He loves to stick out his tongue. And what a pointy tongue it is. This picture doesn't do it justice.

He continues to improve physically. He has been able to sit on his own for ages and loves to stand with some support from us (note the hand behind his back, but now he can move to a sitting position on his own. He still doesn't crawl forward, but he does a funny crab-like crawl backwards. And he's very wobbly standing, but he loves to be on his feet.

It's hard for him to be very mobile when he's leashed to his feeding tube all the time. If he gets a little far away from his feeding bag, then we have to move him back near it so he doesn't yank the feeding tube out. He's yanked it out before and it just makes a big mess with formula leaking everywhere. As he's on a special formula that stinks, we like to avoid that if we can.

We are happy to report that his GI doctor is continuing to wean him off his TPN and reducing the amount he gets every couple of weeks. To compensate for the lower fluids and nutrition, we are increasing the amount of formula he gets through his feeding pump. He still has problems if we try to increase the feeds too fast or bolus him too much at once, but so far he has been able to tolerate slow and steady increases.

The next step is trying him to actually eat by mouth. I took him in for a swallow study last week to see if his difficulty eating (he chokes and gags on most foods and fluids) was due to any of his body mechanics. So far, we don't think so. We think he's mainly forgotten how to suck and swallow and doesn't know how to chew. I'm setting up an appointment with Early Childhood Intervention so we can start doing some therapy at home to improve his swallowing and motor skills.

We are getting much better rest now, ourselves. We are finally getting some regular night nursing for Connor and are able to sleep most nights. That is a huge relief.

We definitely need the sleep, because we are busier than ever. Dad has been traveling more lately and we thought this was also a good time to redo our kitchen. Ok, it's never a good time, but we HAD to do it! All of our appliances are breaking down from age and we've needed to replace our sinks and faucets for ages. It's turned into quite a project, due to the "while we are at it, we might as well..." syndrome. I suppose this is as good a time as any to do this, especially as we've now established a new record for number of days he's been out of the hospital consecutively! (Cheers and whistles and drinks all around!!!)

All said and done, things are pretty marvelous right now. And to top it all off...

We are starting our two week countdown to Connor turning ONE YEAR OLD!!!

So with that, I am closing out this post with a smile and cheer. Love to you all! :-)