Wednesday, August 5, 2009

Lots of stuff (and a new video)

So, what's been going on since my last post....

Murphy finally had his 5-year check up on Monday. He has really grown! He weighs 43.5 pounds and is 44 inches tall. That puts him in the 75th percentile for both. I was so surprised! Those are his highest numbers ever!

He's also started swimming lessons again. He is loving it! And we are loving him loving it. After the debacle of the YMCA's sports camp (which he hated) we are very grateful to see him like an activity. Did I mention that on soccer day (of the sports camp, which introduced him to several popular sports) he said he didn't like it because the other kids kicked "his" ball? Nice. Anyway, he loves swimming and he is now working on freestyle (complete with side breathing) and the backstroke. I'm working on a video to show after these lessons are complete (next Thursday).

Today his normal instructor (same one from the last session) was out and her brother was filling in for her. On the way home I was just making conversation and I asked him who he liked better - Grant or Camille? I was just curious to see if learning from a guy or girl made a difference to him. Anyway, he said, "Camille, because she's like a pretty girl." And the "like" in that sentence was a valley girl like if you know what I mean. Like, I'm so sure.

Cooper had an exciting event... he took his first steps on Sunday (when I was working, of course). I worked Saturday and Sunday for the first time since April and he chose those few hours to walk! But he's walked since then, a few times each day. He just turned 10 months! Murphy was 13 months when he started walking, and well, Harlie can't be compared, of course. So, I was surprised at his early start. I guess he feels like he's going to get run over if he doesn't get up and about. Hopefully I'll catch some video soon and post it.

Harlie's had feeding therapy twice this week already (with her therapist, I mean). Allison (her therapist) is trying to work her in anytime she has another opening. She is really doing great. She's definitely exhibiting some behavior issues, but still making progress. Allison wants to start working on her volume. She is consistently eating over two ounces at each feeding (even at home). And she said if she starts eating three ounces per feeding, we have to have another appointment with a nutritionist to start a plan to wean back her tube feedings and increase her oral feedings. Right now, with her tube feedings and her oral feedings (at least two per day, sometimes three) she should be gaining some good weight. But it's probably too much for her long term. We need her to be "hungry" for her feedings, so it only makes sense to hold back a little volume from her tube feedings.

And, today - at both feedings I gave her, she ate three ounces!!!!

I have started pureeing foods (what a learning curve that is!). For breakfast today, she had some pancakes with strawberries, syrup and milk (and a side of yogurt and juice). And for dinner she had mixed vegetables (broccoli, cauliflower and carrots) and a side of yogurt and juice. Out of both feedings, she only spit back out a total of three bites. The pureeing is an ordeal - it certainly is NOT easy. But, it's worth it. Although on the second day the blender ate the plastic ring that makes a seal. So now I have to find some replacements, but until then it's just going to have to be a little messy. Oh well.

Learning how much liquid (and what kind) to put in there takes practice. Right now there's a whole lot of opening, testing, adding a little milk or water, blend again, repeat, etc. But after more practice, I think I'll get a little faster, which will help. It's just that by the time I make her food, pour it into smaller bowls, mix her juice with thickener, weigh everything separately in grams, get out the timer, then feed her (we're up to 25 minute sessions now) it takes 45 minutes! And that's if I don't get interrupted (which NEVER happens). And I've found that it's best to feed her when there's not a lot going on in the house. And that makes it tricky, too. Most of the time my house is a little crazy.

I finally ordered her food thickener, which has helped. I was limping along with a dwindling supply, which made me ration it, instead of using it as necessary. But now that I have my shipment, I can thicken away to my heart's content. The other night we had some cantaloupe and I pureed that. But that needed some thickener. And she ate two ounces of that. It's been fun to give her some real food. Although I have to get over some of my fears. I thought for sure that she wouldn't even think of eating the mixed vegetables (but she did, twice!). And after the trouble and time of pureeing it, it is a little frustrating when she won't eat it. She wouldn't eat the beans I pureed the other night. In fact, she wiped what was left on her tongue off with her bib. Oh well. Don't know till you try, I suppose.

Today she had physical therapy. We've upped her frequency back to once a week till she fully recovers from heart surgery. She is finally walking up and down the stairs some (she flat out refused till just a couple of weeks ago). It is still so hard to know when she won't and when she can't.

And it's always interesting to see what Traci will use to get Harlie to work. One of the things Harlie won't do is walk down/up our driveway. It is a hill and she's uncomfortable going up or down it. So, she found something to entice her to walk it.



Ahhh, I can't stop laughing at the baby tumbling out of the cart. It's terrible, I know. But so funny. I hope you enjoyed it, too!

Thanks for reading!
~Christy

2 comments:

Susan said...

Harlie is doing awesome walking!

As for the difficulty blending the purees I'm wondering if you have a high speed blender? They can seriously puree anything and might make it easier for you. I posted a video on Ainsley's blog if you want to see one in action. It's really great Harlie's doing so well eating! Huge progress! Yea!

Bonnie Horensky George said...

I love when she says "uh oh". She is so cute!