Feeding woes and reflux news.

Liam hardly ever vomits unprovoked these days. I don't know if you remember way back here when things with Liam were really bad. I mean...bad. I was changing his clothes four times a day and hardly anything was staying down. Now, we can go days with no vomiting! He used to vomit before due to the reflux and delayed emptying of his stomach. But now that we have him emptying quick and the reflux under control, he only vomits when he gags.

Sometimes he will gag on his own thumb or on his baby food. Sometimes it is as benign as putting his mouth on my shoulder and putting his tongue in the wrong position. But they are getting fewer and fewer allowing Liam to keep his food in and keep thoughts of the g-tube away. I never thought I would see the time when we would be able to be vomit free. N e v e r.

All isn't perfect in feeding land, though. We still have his uncoordination in sucking keeping him from really achieving a good draw on the bottle. He is doing better, but will usually only take a portion of it which in turn makes me have to syringe feed him the rest. He is also starting to bite the nipple and won't take the bottle at all. It's fun to see that side of his personality. You know....the one that thinks he is in control. He has also taken to biting the spoon and shaking his head when he doesn't want it. But he still isn't in a position to refuse to eat yet. At least he doesn't mind finishing off a bottle by syringe. I don't know where we would be if he did. Well, yea, I do. But I'm not going there today.

By using the syringe, I have been able to get Liam up to 5 ounces at a bottle. With him getting three bottles a day, we have been able to get him 15 ounces of formula daily. That is an amazing feat. Really. Two months ago, I was struggling to get in 10 ounces a day. And he threw up the moment we went over 3 ounces.

And what is so very wonderful is that I don't have to make him sit still in his chair or on the floor after eating in order to keep him from refluxing. I used to have him sit in his high chair for up to an hour after meals! If we moved him, he would hurl his dinner across the room by using only his mouth. Could be impressive at times. But, mostly it made me cry. Anyway, He can now get out right away and go play because he is keeping it down.

He still has reflux. But now, he doesn't vomit what comes up. This is so good.

Really.

---------

He has shown some great signs of improvement with his oral stim with our new OT. We put our finger or a z-vibe in his mouth and put it in the pocket of his cheek to teach him how to pop his cheeks in. Liam has low muscle tone in his face and he doesn't use all those muscles properly yet. You'd never know it by that smile, huh?

Anyway, she was doing her thing with him this week and asked him to POP his cheeks when she put the z-vibe in.

He did.

Everytime.

Because he thought it was so darn funny when she would say POP!

No sleep for the weary.

Time sure seems to have gotten away from me these days! I haven't been online like I used to. We haven't been too terribly busy but my priorities have shifted a bit and since I normally blog late at night or early in the morning....I haven't blogged much.

I am trying to spend more time with my kids late in the evenings. Aidan and I love to play Nancy Drew and we are trying to finish up one of those games right now. I can only play late when Liam has gone to bed. I also enjoy working in my yard and have been spending a lot of time working on a large patch of landscaping that our former owner didn't take good care of. Shawn hangs out with Liam while I go outside (covered from head to toe to keep the mosquitoes away) and spend some quality time alone, weeding and thinking.

I only get 5 hours of sleep a night and my 34 year old body is pooped. No really, I am worn out. So, I haven't been staying up late to blog as much or even spend time online. I can barely stay awake past 9:30 and then I'm up at 11:30 to feed Liam his dream bottle.

Liam is doing good. He's getting crafty and knows that if he bites the spoon, it can't go in his mouth. But he is doing a lot better at taking the food off the spoon now! Which is a big deal because he just started that with our new OT 3 sessions ago. He is doing well with his oral stim with her- he likes it and he is gagging much, much less. We work on his cheeks, lips and inside his mouth. I repeat all of the things she does right before he eats.

I have to load some videos on here of Liam laughing. As I said in my previous post, he does a lot of it. He now has this new laugh reserved only for his Baby Einstein DVD. It is hilarious. He has a lot of the video memorized and starts laughing BEFORE his favorite scenes come on! But he has one scene that has become his new favorite and he breaks out in the cutest laugh, different from all the rest.

Liam had a weight check this week and he has gained 1 1/2 pounds in the last month! That's an incredible gain for him. He's now 19.2 lbs. What has made a HUGE difference for him is the increase in his reflux meds (he gets another dose at night now) and putting him back on erythromycin to help him empty his stomach quicker. For the first time EVER, Liam has been able to get almost 5 ounces at a time in his tummy. Three months ago he started throwing up when he approached 3 ounces...so that shows what a huge difference the medication has made for him.

His weight gain is surely due to the meds and also to a little trick (or not so tricky, more like a tool) that I learned when Liam was sick last time.

Liam was sick with a high fever and he was dehydrated. He tried to gobble down his bottle but was tired and with his poor suck, he wasn't getting anywhere. I knew he was thirsty and that he needed to get the milk in, so I went and got a syringe to feed him that way. He loved it and took 5 ounces the first time I did it. The little light bulb went off for me and I knew that when Liam got tired of sucking on the bottle, I could syringe feed him the rest. That way he could get the nutrition and wouldn't be forced to take the bottle ofter he was done with it. And that is what I have done for the last month. He doesn't mind it at all (for now) and it has helped him tremendously in the weight department.

It is only at the 11:30 feeding that I sit and think of how nice it would be to have a g-tube so I could get a good nights sleep. But for now, I will continue on, aging quickly and putting my health at risk according to the newest study in order for Liam to get enough nutrition. He needs it.

So, I'm going to have to fit blogging in at an earlier time. I've missed it.

OT

We had to hire a private OT for Liam recently. He gets OT through our early intervention services already. But, after the evaluation at Chapel Hill with an OT who said Liam needed two hours a week just on his feedings, I knew we needed to get some one else on board to help him. Our original OT just doesn't have the time to do it. And she is all for making sure Liam gets what he needs. I really have awesome therapists who are very humble and although they take pride in what they do they are always willing and open to learn new things or bring in new people.

We had our first appointment with our new OT this past week. Of course, since it was the first appointment it was long, but I learned more things about Liam, was given new things for him to work on, and was told that he did some great things. It's always nice to hear that he's doing "great things".
1)She did a full oral stimulation with out him gagging.
2)He lateralized his tongue (moved it to the left and right from center)
3)He took food off the spoon instead of me putting it in his mouth for him.

She has changed how I feed him with the spoon. It's difficult because it is taking longer and I like the old way in order to get done quicker. But, it won't help Liam in the long run so I am having to retrain myself as well. And it stinks. I don't like having to feed him this way. I don't think he's really fond of it either. He seems to do a lot more gagging. He hasn't thrown up at feedings in a while and since I started this new way he's thrown up 3 times. I just don't have it down right yet and can't do it as well as the therapist! And the spoon is 3 times as big as the old ones!



I know he will get it. It's just one more thing to add to my list of things I need to be patient on.