You learn to adore the small things...

like not having to go to the GI doctor for another year!

Yup!

A whole 12 months will pass before Liam has to go for a GI check up.  And do you know why that is?  Because I switched this little man over to REAL food 5 months ago!

I love Dr. Williams. If you are in the Wilmington area or are even within a 2 hour driving range of the Nunnelee Clinic, I highly recommend him. He came in, sat down, and said, "I don't know what you are doing with this blenderized diet, but Liam looks awesome. His growth is fantastic, he is looking great on the charts. I don't need to see you for another year." 

Woot!

Take a kid with complex needs, multiple doctors and multiple visits per year and you get a very satisfied momma when we get to eliminate one. 

Liam has been on the blenderized diet long enough now that he is regular (first time in over a year) and we don't have to give any meds or suppositories any more. I can't remember the last time he threw up from reflux. And he has gotten huge. He has gained two pounds since we started and he's now 3'8" long. He is getting really awkward to carry around. 

But, if we could just get head control.... 

Sigh. 

Not giving up prayer in this area yet though.

Matthew 21:22

A boring blog post

Liam had his first ever dentist appointment this morning. He did great! He allowed Dr. C to clean them and paint them with flouride with only one gag the entire time! What a marked improvement over the last year when we couldn't even get a finger in his mouth without him gagging and then throwing up.

The dentist says his teeth look great and he should be getting 4 new molars within the next year. If you do the math, he's almost three so obviously his molars are delayed a bit. But it's no big deal, and it comes with the micropreemie territory. He said he'll lose his teeth pretty late too. We shall see! I will have had two kids on apposite ends of the teeth maturity spectrum. Aidan who just turned 9 will have all of her adult teeth within the next year (that usually doesn't happen until the age of 12). And Liam won't even start losing any of his until he's 7!

Liam's had major sinus drainage this past week along with a fever for a few days. He's much better but still has the drainage so it's causing him to gag a lot. And then vomit. He's only slept through the night once in the last 5 days. He wakes up coughing and although he can usually manage the cough it sometimes gets the better of him and he'll throw up. Then Shawn and I are changing Liam, sheets, and ourselves before 3 am usually hits.

The weather is changing and the nights are getting cooler and it's affected Liam pretty good. I'm hoping he balances it all out pretty soon. Cuz frankly, I'm pooped.

On the bright side? His teeth look good! And that's a no small feat considering his NICU past and his reflux/vomiting history!

It's the small things that mean so much.

I can't believe I can say this...

Liam has been vomit free for 4 whole WEEKS!

It's insane, I know.

I never thought there would be a day in my life when I would celebrate a milestone of this nature.

Well, I never thought I'd have a kid that could vomit as much as Liam does either! Liam's reflux started out mild when he was so tiny but escalated to a level I didn't know could exist by the time he was 2. Luckily he took it all in stride, because I can't imagine what his throat looked like at times. It had to be raw.

After getting the g-tube in January Liam's reflux went into hyperdrive and I would end up in tears at times. We had to start feeding him his 4 ounces of milk over an hour at a time, by pump, just to settle his stomach and let him adjust to his new anatomy. He started to settle down and quit vomiting for a couple of weeks on this routine (which I thought was the end of the vomit woes) when he got a fever that set his reflux back on the course that would rival a college kid on a weekend binge. The fever was mild, he didn't act sick, yet something happened to his gut because the reflux flared up and he wouldn't quit vomiting even though the fever had gone.

While doing our last round of hbot, Liam would show off his projection skills when we would get to the chamber. It's such a blessing to be around other moms of kids with issues because no one bats an eye at this kind of behavior. Anyway, three quarters of the way through our dives Liam started to quit vomiting. And by the last week, he hadn't vomited at all. I continued on hour feeds until about another week home when I decided to finally try bolus feeding him (feeding him all of his milk at one time by letting gravity push it in). And he's been doing great ever since! Not only is he now vomit free, I am finally able to feed him 4 ounces at one sitting.

I don't want to say we've made it. But it's looking that way!

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!

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 keep thinking of these lovely posts that will be so uplifting or thought provoking and I get humbled into reality by the sound of retching in the other room. I don't have any uplifting response lately to vomit. I hate it. I hate working so darn hard to get food in and it comes out in seconds. It's disgusting and if I never cleaned vomit again it would be too soon. But my plans have been way laid by this adorable little guy who likes to vomit and then grin from ear to ear. I don't even know how I would know he was sick with something serious because he throws up regularly every day! He's thrown up 3 times today! I have tried to slowly stretch his stomach by adding a few more ML to his bottle but he just won't keep it down. Can you imagine how much he would weigh if he kept all of his food inside??? I keep thinking he's on the road to bulimia/anorexia and he's wearing out his esophagus. He's going to eventually hate food cuz he gets to taste it twice.

And then I see this sweet little face, sucking on his thumb, and I can do another day like this all over again.