Wednesday, January 26, 2011

Wordless Wednesday

For a kid who refuses to eat, he sure loves to stick EVERYTHING in his mouth! (that's his feeding tube he's chewing on)

BFF's!  Moya likes to lick and chew on Martin's hands, and Martin likes to grab anything within reach.  It's a good fit.

Thursday, January 13, 2011

Wordless Wednesday. . .On Thursday

Wednesday, January 5, 2011

Wordless Wednesday

Picture taken today--Wednesday January 5th, 2011

Saturday, January 1, 2011

Since We've Been Home

I have obviously neglected Martin's Blog.  What can I say, this kid takes up a LOT of my time.  But he's worth it!
This was Martin's set-up when he came home from the hospital.  It was ridiculous!  We've since arranged things better, and it's not so crazy (although we still have all that equipment).  You has the portable O2 tanks, for when we go out, the feeding pump and stand, the high-flow O2 blender/humidifier thing, the O2 concentrator (takes the room air, and turns it into pure O2), the O2 compressor (just takes the room air so we can blend it) and the pulse-ox to monitor his heart-rate and O2 levels.  Yeah, it's a lot of stuff.

He's got such a great big sister too, who loves to spend time with him, singing to him, reading to him, giving him kisses.  She's so great with him.  Every night when I put him to bed, she has to come in and sing him a night-night song. 

And for Halloween this year, we just couldn't resist dressing Martin up as a "Doctor in Training"  He's had enough experience I think!

As for medically, Martin is slowing getting healthier.  In November, his PEG tube was changed out to a Mic*Key Button (it's kind of like a beach-ball valve) which had a huge difference.  He was quite the refluxie, pukey baby--going through 4-5 outfits a day, a dozen burp cloths, a lot of blankets, and laundry EVERY SINGLE NIGHT.  It was like night and day since we got the button.  He's happier, he doesn't puke at all now, it is wonderful!

He also had some follow-up visits with the pulmonologist for his lungs.  He referred us to the cardiac department where we had some tests done to make sure his heart wasn't working to hard.  It's doing wonderful, and is nice and strong, so we're now able to start weaning him off the oxygen!  it'll be a slow process, but I think he'll do great.  He's already on 1/2 L when we go out, and his sats are awesome. 

We've also been working on oral skills.  That's an even slower process.  he will never take a bottle, and he refused to suck on anything.  but he'll chew on anything and everything he can get his hands on.
Yes, his oxygen tube is a built-in toy!  We are working with a therapist, who comes once a week.  He have learned that the thicker things are, the better Martin will tolerate them.  He probably takes about 1 Tbsp of rice cereal a day, nice a thick, and about 3-5 of those little puffs (like cheerios, but Gerber brand).  We break of little pieces of them, and he enjoys moving them around in his mouth. 

We celebrated Christmas Eve by having his first tooth break through!  (bottom left, if you're wondering) Woo-hoo!  We were all MUCH happier after that point.  Although tooth number 2 is almost through, so we've reverted back to crankiness. 

There you go!  A quick update.  :)  I have plans to keep up better with the New Year.