Sensory Diet

Okay!  Whew, what a weekend.  Hurt my back and can't pick up my own child...  Sad state of affairs!

So - what the heck is a sensory diet?  By the way, as your OT gets to know your child, he or she should be making suggestions about a sensory diet for your child.  If they aren't - ask.

A sensory diet, as I understand it, is different experiences that you design for your child to be exposed to.  As Christy Kennedy explained it, you spend time figuring out what experiences help your child get into a 'good place,' and you plan time into your day for those types of experiences.  What we're doing, again, is getting our children into a place where their nervous systems are able to take in sensory input and respond to it in an appropriate way - and we're doing that over and over again to make these 'paths' automatic for our kids.  The goal is to help our children be able to respond appropriately to more and more different situations.

So, what the heck does it mean for your child to "be in a good place."  For me, it is particularly difficult.  Nathan is such a good natured child (or low-sensory aware) that he is nearly always behaving in a way that is pleasing to us.  And, he can't talk to tell us when he's uncomfortable or not wanting to do something.  He does let us know both verbally and non-verbally if he feels strongly about something - so, we're getting there.   That part is nice.

The way Christy explained "being in a good place" is that your child is able to listen to and respond to your requests.  The way she does it with her kids is occassionally she'll say something like "freeze!"  or "red light!" to get them to stop their rowdy play.  Then, depending on the age and capabilities of the child, she might ask them a question or ask them to do something - now, these are very small requests.  For instance, "name three colors," "name three cities,"  "what are your favorite three cartoon characters?"  

For us, because Nathan isn't talking and because he sometimes responds to our requests and other times doesn't appear to notice that we made a request at all (is he ignoring?  it's SO hard to tell!), the idea is to watch for situations when Nathan responds to our requests (Nathan, can you pick up your magnet before we close the door?) and then think about what we were just doing together (or what he was doing with the nanny) to figure out what kinds of activities put him in a place where he seems to be able to hear us and respond to our requests.  

Now, I'm sure this isn't going to be easy.  As a matter of fact, it looks to our nanny (Lynne!  you are wonderful!) that Nathan always hears her when she asks him to do things.  It is just that he sometimes ignores her.  Is he ignoring or is he just in a place where he isn't very sensory-aware?  This is going to require some very careful observation on our part.

Our current OT keeps telling me that we need to provide Nathan with sensory rich experiences.  I asked her what she means by that - she tells me that it is exposing him to all kinds of things with different textures; playing music for him; letting him swing; hugging him; squishing him with pillows; and more.  So, I'm thinking of getting bins and filling them with dry beans, rice, and, later with sand for the tactile stuff.  We haven't done this yet - partially because I know we're all really not looking forward to all the vacuuming that it is going to mean.  We do run around with him and squeeze him when we catch him, throw him on the sofa (very soft sofa) and squish him with pillows (he laughs and laughs while we do this) and let him swing every day.  So, I think we're doing a lot of what she is asking us to do -- so why do I always feel like I'm not doing enough!?!?!

Report on The Listening Program.  I got to see Nathan with the headphones on today.  His response wasn't as remarkable as it was last week (both Lynne and the OT, Melanie reported this), but he did gradually become more aware of the room and to us while he had the headphones on.   We're doing to use the music one more week in OT and then determine which program we're going to purchase.   There are many places to purchase this The Listening Program from.  We'll probably make an online purchase and save about $400; but, purchasing online means that the support help we'll be getting will be online as well.  But, $400 is a pretty significant amount of money to pay just to get help from people we can look at while we're talking to them.  Again, this program takes 40 weeks to do - so, we'll be working for a year.  Hopefully we'll see some good results!

Happy playing with your kids!   Hope you can pick them up. :-)

The Listening Program / Special Ed

Okay - I didn't post last night because I wanted to wait until after I met with the DeKalb County evaluation folks today.  Now I feel like I might have too much to post.  If it gets too long, I'll just have to finish tomorrow!

I met with Nathan's occupational therapist yesterday afternoon about The Listening Program.  Here's how it works.  It is 10 cds that the patient (child or adult) listens to 1 time a day for 15 or 30 minutes during the 5 week days.  Weekends are 'off.'  Each cd contains...  I think 4 segments.  With the OT group we're working with, it generally takes 20 weeks to go through the cds from 1 to 10.  Then, they go back through the cds from 10 to 1.  So, overall, the program takes 40 weeks the first time through.

The cds contain 3 different 'zones' of acoustically  altered music.  The first zone is lower frequency sounds intended to target sensory integration overall.  The music is special - I can't give enough info about it - check out The Tomatis Method for info on it.   The second zone contains only music in the frequencies of conversation.  So, very low and very high frequencies have been removed.  This section of the cd's is intended to help with language.  The third zone contains only high frequencies.  This set is intended to help with energy.

I called our developmental pediatrician about this program before meeting with the OT.  He has seen both great and non-existent results with the program.  He said that he would absolutely go for it if we'd seen Nathan react the way that he did on Monday.

Okay, here is my very nominally informed theory (very dangerous ground).  There are so many ways to have sensory integration issues - audio, visual, tactile, vestibular (movement and balance), propreceptive (sense of where you are in space and where your limbs are in relation to your body), smell, taste and more.  Because there are so many different areas of sensory input and senses to have integration issues with, it seems to follow in my nominally informed thinking that the same solution wouldn't work for every sensory system.  So, the same thing might work great for one person and have no effect on another person.  The brain is a very complicated organ!  And, the brain is where all this integration of sensory input occurs.

So, if Nathan responded well (I still haven't seen it - we couldn't get the headphones on him yesterday afternoon - uuuurrrrgh!) to the auditory therapy that The Listening Program is, then maybe his biggest issue at the moment is auditory.  Who knows.  We're certainly willing to try it.

I'm painfully aware of the fact that I'm constantly searching for a silver bullet and that there may not be one.  I can't stop myself.  It's like my brain knows it isn't helpful, and my heart just can't seem to stop.

Okay - very quickly (because I totally forgot that I have sensory integration learning to share - I'll do that next time), the meeting with DeKalb County Public Schools for Nathan's evaluation was interesting.  They were extremely accommodating to us - I suppose because Nathan is so young.  The 'test' was LONG.  2 hours.  Ridiculously long for a 2-3 year old.  We had two people testing Nathan at the same time - a developmental specialist and a speech/language pathologist.  I think they wore him out.  We were sitting at the end of the table with the developmental tester on our left and the speech/language tester on our right - they were sitting around the corners of the table from us.  So, we everyone was quite close.  The developmental tester would be doing something with Nathan, and the speech/language lady would get her stuff set up - right in his line of vision and distract him.  I don't know, maybe that is part of the test, but it didn't seem like it.

Nathan behaved fabulously.  He is such a great kid.  We went an hour past his snack time, and, thank the heavenly father above, he did not melt down.  WOW.

At the end of the test, I asked them what their initial thoughts were.  And, of course, they didn't tell me a thing - really, because they can't.  But, it was still hard to hear!

What they did tell me was that Nathan's eligibility for special education wouldn't be up for negotiation - that he had to score some number (can't remember - 1 or 2?) standard deviations below the mean score in at least two areas in order for him to be eligible.  They also told me that if he's eligible, they will make a recommendation about how they think they can best serve Nathan, but parents have a BIG say in that.  So, while I can't beg for him to be eligible if he isn't, I can say exactly how I want it to go if he is.   I think I can live with that -- well, I might have a different attitude if he isn't eligible!

Deep Pressure and Joint Compression update - we have stopped doing the 'brushing' or deep pressure program with Nathan for now.  He was taking longer and longer to fall asleep at night.  I think it was just a LOT of input for him.  I can say that we've noticed him being more interactive and responding more to our questions and requests of him.  I don't know for sure if it has been that program that has caused these changes - we have a new nanny who talks to Nathan a LOT more in addition to adding in the DP and JC program (too much typing!).  I talked to the OT about stopping.  She was fine with it because we'd been doing it for 2 weeks (the minimum that the developers of the program say it should be used).  I told her I'm not against trying again, but I really think that Nathan needs a break.

Okay - I can't wait to share with you what I learned from Christy Kennedy about Sensory Integration yesterday.  But, it's too much to write now; this is too long already, and it's getting late...

Hearing Therapy?

Okay, I realize I may be therapy-crazy right now.  Read past the craziness if you can.

This morning, I had jury duty. So Lynne, our great nanny, took Nathan to occupational therapy without me.

During therapy, Melanie put headphones on Nathan and was playing classical music for him.  Lynne said that he immediately seemed to become more focused and able to pay more attention to the room and people around him.  Okay - wow.  What was that?  I have shot off an email to Melanie (therapist) to get her thinking.  Meanwhile, of course I can't bear to NOT search the web for anything I can find (you know my method, ask everyone and search the web and see what seems to agree and make the most sense).

I searched on headphones and occupational therapy and any number of other combinations of words like that.  I found two things.  

First, I found The Listening Program.  And, guess what?  My new occupational therapist just happens to be a provider for this program.  So, this must have been what Melanie was doing with Nathan.  Interesting!  Reading more, I am learning that this type of 'learning therapy' helps children with all kinds of issues - people with all kinds of issues actually.  The types of behaviors it helps sound a bit like Nathan - an exception is that they say children with these types of hearing/learning issues tend to be frustrated.  Nathan doesn't seem to be a frustrated child.  He is very agreeable.  My guess is that these frustrated kids aren't 3 - they're 6 or 7.  I could be wrong, though.

Second, I found an overview of the research that this program is based on - The Tomatis Method .  This website is fascinating.  The method has been scientifically researched and studied and has been shown to help all sorts of issues - ADD, ADHD, Autism, learning delays, language delays (hello!  that's us!) and more.  Dr Tomatis' research shows that how we hear affects our ability to learn.  He found that the right ear (directly attached to the left brain) is more attuned to language learning.  He also found that we can TEACH our ears/brains to hear better.  He developed special headphones and music to facilitate training our hearing.  

This is all I know right now.  I will report in as I learn more. I have my 2nd sensory integration lecture this Wednesday.  Needless to say, I'll be asking about this.  And, I'm going to call our developmental pediatrician to see what he thinks.  

Oh, and on top of all this for a hyper mommy, we have our Dekalb County school system evaluation this Thursday morning to see if Nathan will be accepted into the special preschool that Dekalb Co runs for special needs kids.  It is a mixed environment - so, typically developing kids are in class with the special needs kids.  I have not heard one bad thing about this place.  I can not wait to learn more about it!   

Most school districts now have a special needs preschool environment that children with special needs can attend starting at age 3.  It's kind of strange here in Georgia - they can start when they TURN 3.  So, if your child turns 3 in March, they can go there through the end of May before school is out for the summer.  Nathan turns 3 in November, so he'll have most of the school year.   

Honestly, I don't know how to tell you to find these places.  If I hadn't been pointed to it by our early intervention program here in Georgia, I think I would've just called the school district.  School district people should know where to send you to get your child the help that you need.

Needless to say, I have to calm down - last week it was the Deep Pressure and Joint Compression program.  This week it is The Listening Program.  It's important to keep perspective - he's a kid.  We need to have FUN with him and LOVE him!

So, on that note, I'll leave you with a - happy playing! 

Sensory Integration - wow

Yesterday, I attended the first of a four-lecture series on Sensory Integration given by an occupational therapist, Christy Kennedy, with years of experience studying the brain and working with children.  I'm looking back over my notes trying to figure out what I learned - it was so much information!

I can tell you that I walked away wanting to learn more about brain stem function.  There is a 'thing' (don't know much about what it is) called Hypothalamus that has a regulatory function over appetite.   Interestingly enough, I just worried about this out loud the other evening!  So often, I'm asking myself - "Is Nathan full?  Will he throw it all up if I feed him one more bite?"  You see, Nathan often does not indicate when he's full.  So, I have to glean that information from signals that he gives with his body.  It's hard!  I need to learn more about this hypothalamus thing!  

Just to give you an idea of what that is going to look like - I'm going to talk to my nutritionist and GI doctor.  I'll talk to my pediatrician, I'll go back and talk to Nathan's neonatologists from the NICU.  So, I'm going to get information from traditional medicine.  And, I'm going to also talk to every therapist who I think might have some education around this brain stem thing.  I'm finding that most good therapists will tell me if they don't have a clue about something and will point me towards people who may be able to help me.  THEN, I will be able to take what I find out on the wonderful wide web and maybe understand a little bit of it.

I'm finding that this learning around things that might be affecting Nathan's development isn't easy!  It takes a lot of footwork/phone work, whatever you want to call it. 

Back to the lecture, I also came away from the lecture realizing that a lot of Nathan's little social idiosyncrasies may be sensory integration issues - so, maybe we can help him be more social with some therapies.  

Briefly - we take in information about our surroundings and our bodies through way more than five senses.  Our bodies transmit that information through our nerves to our brain stem where our brain organizes the information and routes it to the area of the body that needs to respond.  Sensory integration issues are about the brain not being able to handle some portion of that pathway efficiently or well.  

She explained that no one's nervous system performs perfectly all the time.  Those days when you bump into everything or drop everything - that is an example of having issues with integrating your senses with your body.   Hey!  We have a real reason for those days when we're having "issues!"  Isn't that great!?!?!  

Christy also said that everything affects how our body transmits these signals.  Diet.  Chemicals in our body can either help or hinder how well signals travel.  Sleep.  We intuitively know that.  How much stimulation you get in any given day.

One big thing I came away with was an understanding of a couple of things that occupational therapists are trying to do.  

First, to build success in sensory responses to make the neural pathways more automatic for a child.  So, visually - the ball comes at you, raise your hands to catch it.   In any system that Nathan might be having issues, we want to help him make those neural pathways more automatic.  That helps my understanding!  

Second, they try to help a child be less (or more - depending on their issue) sensitive to certain stimulus.  By doing this, they can increase a child's capability to learn because they are either less sensitive to distractions in their environment and able to focus easier or more aware of their environment in order to be able to pay attention to something outside of themselves.  

Overall, I came away with a hopefulness that I can actually learn about this stuff and help Nathan.  Yay!

I can't say much more about the lecture; it was too much information!  I do know that a website that I posted a few days ago really made me more aware of different behaviors that might actually be sensory integration issues.  That site is:

http://www.sensory-processing-disorder.com

With Christy Kennedy's permission, I will post her contact information to find out how you might be able to attend her lecture series or gain access to the information in it.  She is in the  Atlanta, Georgia metro area.

A quick report on the Deep Pressure and Joint Compression program we're working on with Nathan, he's making more and more noise; he doesn't seem to be as bothered when his hands get messy; and, he is walking in the grass with bare feet without even thinking about it.  Cool stuff!

An honesty report - I still haven't managed to work the oral therapy program into our day.  Ugh!

Happy home therapy-ing and playing!

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. :-)

Sites I like

Every day I learn how little I know.  Here are some sites that I am finding tremendously helpful:

http://www.sensory-processing-disorder.com -- this is an amazing site with checklists to see if your child (or you!) might have a sensory integration issue and how you might them.

http://www.quackwatch.org -- these folks have researched questionable heathcare practices!  Want to know if what your doctor/therapist is proven or has been disproven?  Check it out here.

http://therapyonthesquare.com -- If you're in the Atlanta, you could work with these folks - I don't at the moment, just because I hadn't found them before recently.  But, even if you're not here in Atlanta, they have some fabulous links on their 'links' tab.

Happy weekend!

Brushing Technique

Yesterday, I promised I'd share more about the brushing program that our OT has us doing.  In the interim, I decided that I'm no expert, so, I've found this link.  

http://www.thetherapyplace.net/newsletter/3_2.htm

I tell you, based on just a little bit of reading, this might be a site I visit often for help.

A report on how we're doing with the brushing:  

Nathan is definitely responding.   We're observing that he is becoming more engaged with us and much more social - we're also observing that he is having a really difficult time going to sleep.  My interpretation of what the OT has told me to do (not do the last brushing session of the day and only do the joint compressions) that maybe she thinks we're over stimulating him.  I have asked her what to do if he still has trouble settling down - I'll let you know what she says.

So, over the weekend, we may be really reducing the frequency with which we do this - or, we may stop.  I'm not sure what it will be.

However, I think it is SUPER interesting to observe how much effect consistently doing just one of these programs that the therapists suggest that we, as families, do.  Therapy seems to SOMETHING!  Again, I'll continue to report how it is going.

Happy playing!  Happy weekend!

Not all Preemies were Created Equal

My husband and I were having a conversation the other day about whether or not therapy helps kids.  You can read so many postings on all sorts of sites about parents who feel that they spent too much time 'helping' their child and not enough just playing.

My husband is on the side of - it's not working, let's just let him be a kid.  I'm on the side of - hey, therapy gets him out, it's not a terrible experience, and I really do think it's working.  So, on this, we are a divided household.  I have to say, to the credit of the fabulous man I married, he is not preventing me from trying therapy.  On my part, I have finally promised that we'll start sitting down every two months to evaluate whether or not we're spending our money wisely (therapy can get expensive!).

It's hard to know what would have happened if you didn't do what you've already done - it's that path not taken thing.  You can't go see what life would've been like (well, unless you're James Stewart in It's a Wonderful Life).  I don't think we can look at our children and say to ourselves, "S/he would be in exactly the same spot without all that therapy!"

What I've observed so far is that there are at least two parts to this thing.  First, not all preemies were created equal.  And, second, are you actually doing the 'homework' the therapist gives you?

We met some fabulous people during Nathan's 4 1/2 month residence at the hospital.  Some of the kids were born just as early as Nathan, some a little later.  But, what we have observed as they're growing and developing (we still keep in touch), is that the kids aren't all developing at the same rate.  One of our friends' son, who was in the hospital almost the exact same amount of time as Nathan, is running around, talking, and really almost completely caught up to his full-term, typically developing peers.  Now, he didn't have as many surgeries as Nathan did, and, if I'm recalling correctly, he didn't have as many "mac daddy" confessions as Nathan did.  And, we have some other friends, whose daughter was born at the exact same gestation as Nathan and nearly the exact same weight.  She's doing better than Nathan in some areas and not as well in others.  She did have almost the exact same number of surgeries and she did have some "mac daddy" infections.

So, my learning?  Kids are going to develop at the rate that their bodies can.  Can we help them?  I think so.  What makes some kids go faster than others? I don't know, but the nurses and doctors told me time after time after time that the more surgeries and infections, the more delayed a child would be.  I didn't really get it until I started living it - and, until I started looking around and comparing development rates.

(Count Nathan's surgeries - 2 major life-threatening ones, 3 more minor.  Surgery=going under anesthesia and having a surgeon there :-) ).

So - to the parents who see kids who are the same age as theirs and didn't go to therapy but are at the same place developmentally, don't judge yourselves too quickly.  Do you know that child's medical history?  Do you know how much their parents did with them at home that was therapy-like?  Who knows.  Have fun with them NOW - don't berate yourselves over too much therapy.  We love our kids - who wouldn't want to help them in any way possible?

My second thought is about actually implementing the programs at home that your therapist tells you will help your child move along faster.  I'll confess right now - we haven't.  Here's what I think I see happening, though.  

This past Monday, our new OT told us to implement a 'brushing and joint compression' program at home to help Nathan with tactile aversion and with body awareness.  She actually showed us how easy it was.  I have to admit, the fact that Nathan actually likes it REALLY helps.  So, for the first time, we're actually doing what the therapist is telling us to do.  5 times a day, we're spending about 120 seconds to go through this program.   Do I see anything yet?  I'm not sure, I'm cautiously optimistic.  I think I can see Nathan becoming much more engaged and willing to engage new, different people - this is a big step.   I'll report back in a couple of weeks to let you know how we're doing.

Well, this is the FIRST time we've every actually listened to the therapist and been consistent about implementing what they ask us to do (I am ashamed, it's embarrassing - for me, it is just so emotional to take care of my little man - many times I'm emotionally exhausted just from the baggage of Nathan's 2 3/4 year history, and I just can't bear to do something else with him other than hugging and tickling and chasing).

Along the same lines, our speech therapist, asked us if we were implementing the programs (admittedly, more difficult) at home that she has asked us to do.  I told her we weren't, and she gave us an example of a boy who came to her 2 months ago not talking whose parents were doing the program consistently, and now he is talking.  (taking my own advice here, I have no idea what this child's medical history and diagnoses are - no judging and berating myself!).  Not looking at that path not taken and guilting myself about it, I am now realizing that I have to at least try this thing to see if it works.

Because of how important I can see that it is to do these 'programs' in order to make any kind of assessment of whether or not therapy is working.  I'm now committed to actually integrating this stuff into my life (I can't say I'm going into this joyfully - I'll have to ask for God's help with that one!).  Seriously, though.  I'm paying these people a ton for their expertise, I can't claim therapy doesn't work (or let my husband claim that) if we haven't actually been doing the therapy programs at home! 

My learning there?  Well, if you're going to do the therapy thing, don't drop it and say it doesn't work if you haven't REALLY tried it.  Going to a gym or playroom or office (whatever they call them at your place) once a week and going through the motions of therapy is NOT enough.  Our therapists tell us that doing things on a daily basis is important, that the therapy session is really just for us to see how to do things at home and to do a few special things that we don't have the equipment to do.  So, because going more often than once a week really becomes financially prohibitive for us - we're going to try out these homework assignments!

I'll post on the brushing and joint compression programs tomorrow - this is getting too long!

Happy playing and and making your therapy play-like!

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!

Diving right in

Well, after weeks of trying to get Nathan into a 'social' therapy group (meaning, not one-on-one therapy), I gave up waiting and set him up with an OT (occupational therapist) not too far from the house.  When I find some group programs, I'll evaluate whether or not to keep him in the individual therapy sessions.  It all gets very expensive, very quickly!

A little background.  Nathan was born at 24 weeks and 6 days weighing 1 pound 7 ounces.  He was in the hospital for 4 1/2 months and went through several surgeries and infections.  Right now, our pediatrician is the infectious disease doctor that followed him in the hospital!  You don't get to know the infectious disease doctor unless your child has quite a few of what I call 'mac-daddy infections.'  Nathan did.  

Nathan is nearly 3 now.  He has come SO far.  We go to therapy to help him learn to talk (speech therapy) and to help him develop his fine motor skills(occupational therapy).  For more detail on his beginning, you are more than welcome to visit the blog we created for friends and family to follow while we were in the heat of things with him at web.mac.com/jansorensen.

For the past two years, I have struggled to find Nathan the best help out there.  The best doctors, the best developmental pediatrician, the best therapists, and the best all around programs to help him develop.  I've made a lot of mistakes, I've run into a lot of dead ends, and I've found some really great help.  So, my purpose for this blog is to share what little I know.  I am not a doctor or licensed therapist - I'm a concerned mom.