Reflux / Feeding/ Ahhh!

I can honestly say, that the learning around all this never stops for me.   I called Nathan's doctor about his spit up, whether or not his esophagus was moving properly, etc, etc. (previous post)

The doctor isn't concerned enough to test anything.  He basically said - "well, sometimes the spit up of a reflux kid doesn't smell because they're on acid suppression medication."  Hm.  I honestly don't know what to think.  I guess without having little receptors in your body, most of what doctors do in these situations is guess (educated, but guess) based on symptoms.  And, when the patient can't talk - well, it's even harder.

So, our mode of operation now is to make sure that Nathan moves around in the morning before he eats (to get his body going); let him wait a few minutes (10, maybe?) before he runs around after eating; and make sure he moves around after eating before we sit him in the car.  Got that?  Sheesh! :-)

The brushing (more properly called Deep Pressure and Joint Compression) program is going well.  Nathan was less tactile defensive at his OT therapy appointment today.  I think he's becoming more interactive - but, that is a difficult call.  More in a week on that.

So, here's a frustration for you - if you have trouble with your child gaining weight and also trouble keeping food down and also trouble knowing if they've had enough or not, you're with me.   Tonight, Nathan seemed really hungry.  But, when we'd gotten to about 4 oz (200ish calories - yes, I pack it dense with calories), he seemed like he was starting to have a teensy bit of trouble.  He wasn't saying 'all done' with his characteristic horizontal right-to-left emphatic 'slash' with his left hand.  But, he seemed to be slowing down...  sort of.   So, I stopped.  Nathan isn't a complainer - so, don't go thinking that my child was asking for more at this point.  He wasn't.  I stopped thinking - better to keep those 200 cals in than clean up a spit up and worry about him being hungry because he wouldn't eat after spitting up.

Add to that - he had trouble (quite a bit) going to sleep tonight.  Now, this is nothing new.  Nathan rolls around in the bed for an hour pretty much every night.  Before you think I'm complaining, let me also explain that the little angel just rolls around, sometimes laughing and sometimes playing, until he falls asleep.  I know - wild.  So, I'm not complaining - I'm worried that he's too stimulated (or something, I don't know - I've thought about this almost too much to be coherent at this point) so he can't relax.

So, crazy, worried mommy sits downstairs staring at the video monitor (are these things actually good for you in this type of situation?) wondering - 'should I go up and rock him more?  will he just wait for me to come back up tomorrow night if I do it tonight?  is he actually hungry?  did I feed him enough?'  And on and on and on...  

So - I stopped feeding him tonight not because he said 'all done' but because it seemed like he should done based on his body language (a VERY sensitive reading of it, mind you).  Did I stop too soon?  How can I know?  So many times, I've kept feeding him and he's spit up losing most of his dinner.  But, how do you balance that?  Am I too cautious?  Will his stomach not expand?  .....

Okay - re-reading that.  I'm getting neurotic over it.  What person hasn't (as an adult or almost-adult) eaten too much and then been hungrier the next day for it?  I'm pretty sure that stomachs have the capacity to expand and contract as our behavior requires it.  Nathan isn't going to permanently under-eat because I fed him just a little-bit less food than he could've eaten...  Ugh - I still worry!

Tell me if you think I'm crazy... :-)

Okay - after sharing that!  Still!  Happy playing!  Our kids need to have fun with us. :-)

Reflux and low tone learning

We went to Nathan's speech therapist this morning.  She's actually an oral motor specialist - meaning, she knows exactly how all the muscles in your face and mouth move to make every sound, and she knows how to stimulate the face and tongue to teach children to move their tongues and cheeks and lips to make sounds.  That's pretty impressive.  She also knows a lot about surrounding disciplines because she's been doing this work for her entire career - she's a grandmother.

I got Nathan out of bed a little late, close to 8 am, this morning and wasn't feeding him before the new nanny got to the house.  I wasn't dressed or ready to go to his therapy appointment at 9 (we leave the house at 20-25 till), so I let her sit down and try to feed Nathan his breakfast while I ran upstairs to get ready.  I came back down at 8:30, and he hadn't eaten a thing.  Poor woman, she was really trying hard - more on that later.  Anyway, I fed Nathan a little bit and then we had to put him directly into the car to get to the appointment.

Nathan spit up at the appointment.  Nathan has reflux AND he has low tone in pretty much all of his body (this just means that he is floppy - very limber - it isn't crazy uncommon, I'm told many gymnasts are low tone).

I know, I know - get to the point.

The spit up didn't smell of stomach bile.  It smelled just like the food that we'd fed him for breakfast just 30 minutes before.  Sometimes this happens - other times it smells like bile.

The therapist looked at us and said, "It doesn't smell because it never made it down to his stomach."  Both of us, me and the nanny, looked at her like, "Huh?"  So she explained more.  She told us that often times, children with low tone will have trouble moving their food down their esophagus.  Because their muscles are weak, sometimes their muscles can't move the food down to the stomach without stimulation.  She said that it is common for therapists and doctors to advise parents to let their low tone children walk around after eating in order to get those muscles moving and get the food digested.

As I said above, we'd fed Nathan and shoved him in the car seat to make it to the appointment on time this morning.  Wow!

Because we're not normally with a therapist or doctor when Nathan spits up, this subject has NEVER come up before!  I'd like to say that I learn something this mind-boggling (well, for me it is, maybe my mind is more easily boggled than yours) every day.  But, I'm HAPPY to have learned this this morning!

So, as part of a solution for us, we have moved Nathan's speech therapy appointment from 9am on Wednesdays to 10am on Thursdays.  And, now his daddy, nanny and I know to let him walk around a little bit after he eats before putting him in the car seat or in bed.  Who woulda thought?

Honestly - there are so many things to know - it's exhausting.

Okay, back to the nanny trying so hard to feed Nathan. :-)  She's a wonderful person, she cares very much and isn't necessarily used to feeding a child where the parents and doctors ARE actually concerned about the amount of calories we are getting into him.

Background - because Nathan was a micro-preemie (1 lb, 7oz at birth), he is behind in his growth and we're trying to help him catch up.  His nutritionist wants him to get between (sit down before you read this) 1600 and 1800 calories A DAY.  Wild, huh?  Anyway, everyone is weighing him to see if he's gaining weight and growing.  So far, so good.  Even when he doesn't gain, he grows.  So, doctors are pretty happy.  But, still, it's there.  We care about how much he eats and how much he gains - much more so than families of typically developing kids.

Back to feeding - Lynne, our wonderful nanny, has only been with us for a little over a week.  She's anxious to make sure that Nathan eats well.  

Problem is twofold - 1) if Nathan doesn't know you well, he's not as willing to let you stick a spoon in his mouth and 2) if you're anxious when you feed him, he notices and doesn't really want to eat.  Well, Nathan doesn't know Lynne well, and he can certainly feel her stress.

Why do I know this?  Experience.  Our first nanny was with us from about 5 months after we brought Nathan home.  He was still not holding his head up and was barely rolling over at that time.  He was really just an infant.  So, Nathan got used to Kristin being around very early and trusted her very early.  Nathan was tube-fed (through a g-tube) at that time, so Kristin helped us teach him to eat the purees that he eats today.  As a matter of fact, he ate for her long before he ate for me or my husband.  Why?  She was relaxed.  She wasn't the least bit emotionally invested in whether or not he ate or she had to feed him by tube.  She was also very consistent.  Every time they sat down to eat, she tried it the same way for the same amount of time.

It was MONTHS after Kristin started feeding Nathan before I was able to get him to eat any substantial amount from me.  I think she started feeding him in Feb/March.  And, in August, while we were away on vacation and away from Kristin for a little over a week, I was finally able to stop using the feeding tube and feed Nathan completely by mouth.  He had been eating for me for a little while - but never enough to stop using the tube, at least at night!  It was a big breakthrough for us.

There were many other little things we tried - some worked, some didn't - along the way.  As I come across things that remind me of them, I'll share.  Just in case it is useful.

The only reason I tell you this is that it took me a long time to get it.  I had to calm down - I couldn't be stressed - kids feed off of our stress.  So, Nathan wouldn't eat when I was stressed.

In addition to problems #1 and #2 above, NOW, Nathan is old enough to know exactly what we are saying.  So, Lynne (new nanny) can't talk about how he won't eat for her right in front of him. :-)  She is doing this, and he is picking up on it and is a little rascal!

The really fun and wonderful thing about this is how much of a little rascal he is! :-)  SO much fun!  He's just so cute!  I can't wait to get pictures off the camera and onto the computer to share a few.

Happy growing and learning!