Liam is still running a fever off and on. It's never over 100.5 but it's enough that it can make him pretty cranky. He's such a normally happy fellow and doesn't usually complain when Cathy does therapy but he didn't want to participate too much this Thursday and was done before his time was up. Which, if you knew him, is very unlike him. He generally loves having Cathy work with him.

Today he napped from 10-12:00 and fell asleep again at 2 and slept until 4. Clearly he needed to rejuvenate himself! Last week I was lucky to get an hours worth of sleep in! Plus, he is refusing to eat his night time bottle. I would be freaking out (kinda am) but I keep reminding myself he doesn't feel too hot (well actually he does, ha) and that I don't like eating when I don't feel good either.

Liam does this weird thing when he is on his tummy. And It ticks him off. He will bring his arms up behind his head, grab his hair and then tighten up his arms, back and neck to where he looks like he is trying to burrow into the carpet head first. When he finally realizes he is going nowhere he will relax. But he usually, at that point, has a death grip on his hair and he doesn't let go so he cries out in pain.

The ABM therapist said not to put Liam on his tummy right now because he is getting no where when he does that and he is using the wrong muscles and wrong movements and that's not the pattern we want him to continue to do. So I have worked a lot with Liam in side lying and with his rolling. He is doing really good in side lying. As you can see here. He couldn't lay like this a couple of months ago.

He would arch out of the position every time we put him in it. He is also bringing his arms in midline and holding them in a more natural relaxed position. It's very nice to see. Where he started and where he is now are like night and day!

But I have noticed that all of the time away from being on his tummy has caused Liam to go downhill in his head lifting. He was regularly increasing the seconds he would hold his head up but has not been able to do as well recently. I know that is because I haven't been putting him on his tummy. Partly because he does his little burrowing act and he gets so mad and partly because one of the therapists said it wasn't a good idea right now.

I don't want Liam to backtrack. Every gain he makes is a milestone and we need to keep his milestones coming. So, I started putting him back on his tummy again this week. I already, after just a couple of days, have seen him working again to get his head up. But the coolest thing is that he is using his arms (all by himself) to try and push up. I don't think he has ever really done that before. I normally have to help him bear weight on his arms. But tonight he seemed to be kicking the muscles in on his own and was pushing up with them just the slightest bit.

I told you, I'll take every milestone I can get!

This was Liam a few hours ago due to a 100 degree fever. He just gets so cranky when he is running a fever. What's weird is that he gets a fever every now and then but it never progresses into anything and he never has any other symptoms. I guess I should be thankful...





Cuz this is how he was feeling just a few minutes ago.

Why yes, that is a pom pom on his head.

We had out first minor fiasco with his glasses this week. Ian went to pick up Liam out of his crib and noticed that his lens was missing on the left side. The frame was also popped apart and the screw was missing. We looked all over for it and couldn't find either one. I finally found them both under the blanket he had been laying on. I couldn't believe the screw was right there with it considering how itty bitty they are.

We got them all fixed up and that was that.

But the next day, when I was feeding Liam, his lens popped out again. I missed it happening so I don't know how he did it but I found the lens and the screw was gone. Because it was a holiday weekend the optometrist was closed and we couldn't find a repair kit at Wal-mart so Liam went for two days with no glasses. It was kind of interesting because it seemed to me like he was trying harder to focus and it made his esotropia a little less noticable. At least it wasn't a major issue because we only get one free repair on these.


And I'm still waiting to hear back from someone about getting his GI appointment. Sheez, you'd think we already had universal healthcare or lived in Canada or something!

Liam is back to being the little cranky pants in the first picture, so I better go get the Tylenol.

Vision update

At Liam's first appointment with Dr. D. last month, she put a black and white drum in front of him and spun it. She said it was a tool used to check for cortical visual impairment (which Liam has been diagnosed as having). She spun the drum and said that proper visual response would be for the eyes to "jerk" in the opposite direction that the drum is spinning. Liam's eyes didn't jerk. As a matter of fact, he didn't pay any attention to the drum. He was looking everywhere but at the drum.

She then dilated his eyes and checked things out before putting on a pair of spectacles that would be in his corrected lens. She spun the drum again and "thought" she "might" have seen a bit of "jerk" with the lenses on. His eyes were dilated so big that I didn't take much stock in that assumption.

We are now a month out from our initial appointment with Dr. D. and she wanted to see him back to see how he was doing with his corrected lenses. She asked me how I thought he was doing. I told her that I thought he was doing fabulous because before the glasses he didn't care one smidge about Baby Einstein DVD's and now he will watch them! That, to me, was incredible!

We then sat in the chair and she put the CVI drum in front of him again.

She started spinning it.

And Liam started laughing at it!

He was looking at it and his eyes "jerked"! How awesome is that? She said she really felt that Liam's CVI will start to fall by the way side now and that his vision should improve a lot now that he has the corrected lenses!

We do still have the problem with his esotropia (eye turning in) and we will address that at his next follow up in one month. She wanted to give his eyes ample time to adjust to the glasses before resorting to patching.

I really should pray about that because I honestly have never done so for his esotropia. I just haven't thought to do so as all my prayers tend to focus on head control (as if asking for only that one thing will make God more inclined to do it). I would LOVE for Liam to start focusing both eyes at the same time so he doesn't need patching. Hmm. I think I've had my mind opened to the fact that I should be praying about it. So, I will.

*Oh- and yes, those are Liam's glasses and my glasses on my laptop.

I figured you were wondering.

Feeding Evaluation

Liam has oral issues.

We have had him in OT since November and due to the delicate nature of his gagging and vomiting, his OT has wanted to be very gentle with Liam. She doesn't want to push him and have him throw up what little volume of food he takes in. I have tried hard to avoid the g-tube! But we've walked such a fine line that I feel like we haven't been able to help him at all.

Liam has a multi-faceted problem that I was well aware of a long time ago. He has issues with:
1)Oral motor
2)Sensory/tactile
3)GI
-and a few other minor things that all add up to a lot of obstacles.

But Liam has been able to drift along for a long time with out any real concern. His Pediatrician didn't feel it necessary to have a GI consult since he's still s l o w l y gaining weight even though I wanted one a long time ago.

So, we drove to Chapel Hill today for a feeding/speech evaluation by their OT. Our local OT wanted to get feedback from someone else on what to do/not do to help Liam along with his oral motor skills. The evaluation went really well and I know she got a good look at the problems.

I didn't feed Liam after his early breakfast because they wanted him hungry when he got there. We didn't get into the appointment until 1:00 and it was around 1:30 before I actually offered him a bottle. He took some of it but clearly wasn't all that hungry after going hours without food because he only took 2 ounces. She asked me if he ever gets hungry. Uh, that's a big NO.

She asked a bunch of questions. She watched him eat from a bottle and a spoon. She felt him as he ate and watched as he threw up all of the food I had just given him. ...SIGH...

But her primary concern is getting him in for a GI consult asap. She said to me all the things I knew already...

He has reflux. And it's bad. His morning vomiting (on an empty tummy) is because of the reflux.
He is most likely emptying very slowly from his tummy.
He has such a strong gag and with the full tummy it makes everything come up.

And until these things are taken care of, she said his oral motor skills are going to suffer. She said that his skills are rudimentary and that they are working for him now but that as he gets bigger and older they aren't going to work anymore. :o That was news to me but probably not to everyone who has watched him eat. Especially as I think back to the cranial sacral therapist who said she had never seen a child with such complex issues not have a g-tube! Um- thanks?

I am hoping she will have the strings to get us in to GI faster than I could. When I tried to schedule an appointment they weren't even taking appointments until August! Clearly it won't be a good idea to wait that long. Especially now that my little man is thinking he can just bite the bottle and not drink it anymore. It makes for a very irritated mommy and I am sooooooo tired of our sleep feedings. I have only gotten 5-6 hours a sleep every night for over a year. Last night was the first night ever that I actually wished he had a g-tube! I tried to banish that thought but I am a mad, sleep deprived woman!

Anyway, after some GI help we can then focus on his oral motor. She gave me some tips and why they are important for him. She said to put the food on the sides of his mouth and alternate between sides and the front to get him to work on his lateralization. She also wants me to hold his chin while he sucks from the bottle to help him learn to properly suck (I tired this ages ago but I didn't stick with it because I wasn't sure I was doing what I was supposed to nor did I know why I needed to do it) which is difficult because I only have two hands. And she said to try feeding him sitting up straighter.

She did say that he is a very accomodating boy. And he really is. But, we want to keep it that way and it most likely won't stay that way when he doesn't care about eating, doesn't feel good about eating and doesn't get hungry. He just puts up with me right now. =)