Say cheese!

If you tell Liam to "Say Cheese!", he will grin. But I haven't used it for taking photos. It was just something I would do to him and then give him this big cheesey grin so he would know what I mean.

Today, I thought I would try to capture our photos together since we have so few. I was bored, waiting for the girls to finish with their hair. I sat back, said, "Say Cheese!" and snapped this photo.

And this one...


I had no idea I could use that for photos. I will clearly be taking advantage of that now.

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.

Things I love

I love...

that Liam can sit in his high chair and watch my dad on the other side of the room and laugh as he waves at him.

that Liam can be on the outside of the trampoline and giggle with joy when he sees the kids jumping on it.

that Liam can anticipate me pouncing on his last little toe in "This Little Piggy" and squeal before I get there.

that Liam thinks it is the MOST hilarious thing to have his sister jump up in front of him while he is sitting in his car seat atop a shopping cart shouting L I A M !!!

that Liam grins when I ask him, "what does a kitty say...cow say... etc.

that Liam loves to play peek-a-boo with me.

that Liam smiles on his favorite pages of his books.

that Liam loves to play patty cake and anticipates the clapping.

that Liam loves kisses.

that when I bend over him in his crib, he smiles at me.

I could go on, but I bet you get the idea.

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A few of those things that I love about Liam couldn't have happened a few months ago. Liam wouldn't have been able to see it.

Last week, my dad (who lives with us) was waving his newspaper at Liam who was across the room in his high chair. I was shocked when Liam started laughing at it. I could not believe that he saw it from that far away. It was such an exciting moment. I am not sure what he saw- but the fact that he saw it was fantastic! He laughed and laughed every time my dad flew that paper in the air.

It is such a gift to be able to lean down over Liam's crib and smile at him and have him smile back at me. He still doesn't make eye contact, but he now sees my face. Which is something I didn't know would ever happen. It's a gift I will never take for granted!

I love it!

In the dark and all alone.

Cherokee Tradition - Author Unknown

Do you know the legend of the Cherokee Indian youth's rite of Passage?

His father takes him into the forest, blindfolds him and leaves him alone.

He is required to sit on a stump the whole night and not remove the blindfold until the rays of the morning sun shine through it. He cannot cry out for help to anyone. Once he survives the
night, he is a MAN.

He cannot tell the other boys of this experience, because each lad must come into manhood on his own.

The boy is naturally terrified... He can hear all kinds of noises. Wild beasts must surely be all around him. Maybe even some human might do him harm. The wind blew the grass and earth, and shook his stump, but he sat stoically, never removing the blindfold. It would be the only way he could become a man! Finally, after a horrific night the sun appeared and he removed his blindfold.

It was then that he discovered his father sitting on the stump next to him. He had been at watch the entire night, protecting his son from harm.




We, too, are never alone. Even when we don't know it, God is watching over us, sitting on the stump beside us. When trouble comes, all we have to do is reach out to Him.

Moral of the story: Just because you can't see God, doesn't mean He is not there.


I have felt just like this Cherokee boy.

I've been all alone, in the dark, not able to see what lays just beyond my reach.

I have sat, scared (terrified) of what is about to happen to me. I have cried tears of pain at being left alone to defend myself against my fears. I have wanted to be rescued.

But, I wasn't really alone. I have never been alone. Even in my darkest hours, God was there. Did I feel his presence? No. But that doesn't mean he wasn't there with me. Just like this Cherokee boy who couldn't see, we can't see everything either, even though our eyes are open.

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.