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.

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. =)

I've had several things to post about this last week and it seemed like the week got away from me before I could get anything written!

Liam had his 1 year well baby check up (a bit late since he is now 13 mo corrected) and we got another lovely weight gain so he is now a whopping 16 lbs 10 oz. I know what you're thinking... he is becoming such a chunky monkey, right? That's what I was thinking. But guess what? He isn't even ON the growth chart! Yup. He is so far below it looks like it will be a year before he even gets on it! And so as not to make me feel bad about the fact that Liam is a little lot underweight for his age, the Dr. said it would better for him to be underweight than overweight if he has to spend the rest of his life in a wheelchair. Ahem... WTH? Really?

I didn't say anything when he said that. I didn't really know what to say. But now that I have thought about it. I have a LOT to say about that...

Do you realize what you are saying? Do you realize how we have hopes and dreams and you can just deflate our hopes with one poorly thought out remark? Can you see the future? Do you have a direct line to God about what His plans are? And least of all, what difference does it make if an immobile person is overweight or underweight??? I think that would be the least of anyone's worries!

Ok- I feel better getting that off my chest! Thanks for being my sounding board.

Liam was on the chart for height, although he was only the 3rd percentile. But I really think they weren't using a preemie chart and I didn't even think to ask. Liam is still gaining and growing and that was all that concerned me at the time.

Liam also had his one year evaluation for the early intervention services he receives. It was nice and relaxed and I didn't feel it necessary for Liam to perform. I thought he did fairly well, considering his delays and I could answer many of her questions positively. He will still receive services for the next year, of course, and we are looking at maybe adding speech to his routine. Liam loved this red mirror they had and he would look at it and smile. He also tracked it very well. He tried to grab toys when she put them in front of him. I think his new glasses are really helping him focus better and see farther. Doesn't he look adorable?





Liam got a stander this past week. If I hear my PT right, we aren't using it for "standing" (I know, it is called a stander so you can work on standing) but we are going to use it for head control. He will get the benefit of standing in it and bearing weight on his legs in a proper position but it will hopefully give him the stability and response he needs from his body to lift up and work on his upper torso strength. He's vomited everytime I've put him in it, but thats because he bends over and squishes his belly while I am trying to strap him in. To make it fun for him, I tip him over backwards in it and he thinks it is quite funny. It keeps him laughing while he is in it. I don't know that we get to work on much head control when I do that.... He looks like he's posing here, huh?



My 13 yr old, Rylie, is pretty observant and noticed that Liam didn't look like his legs were the same length when he was in the stander. I just though it was because he prefers his right leg to stand on and he is now standing flat footed with that leg when he used to be on his tippy toes. I noticed it even more after she did and saw that when he stood flat on his right leg, his left foot didn't seem quite right. I mentioned it to the OT doing the eval. today and she said it did seem that his left leg was shorter. But, who knows if it is musculature or skeletal at this point. Just something else to add to Liam's laundry list.




And last but not least, we got into the Chapel Hill feeding clinic for May 18th. I don't know how God worked that one, because when I originally called they didn't have any openings until August! They told me to bring him hungry. It will be interesting to see what they have to say and if they will actually be of any help. We've coasted this far. I'd love to start cruising.