Feeding School Dropout

When you begin to slog through special needs parenting you often feel as if you need to do and go to as many theraputic opportunities presented to you.  After all, a "good parent" wants to do what is in the best interest of their child.  Just as much as you put little Janie in ballet and little Jeremey in karate to keep them well rounded.

When we brought Cary Lynn home she did't come with a manul, but she came with a lot of therapists:).  She had Physical, Occupational, and Vision therapy.  But there was one area that was lacking and that was feeding.

Cary Lynn drank from special bottles and had a tube in her nose (an ng tube) to help her eat.  She had weak oral skills and was super tiny from being undernourished.  It was strongly suggested that I start feeding therapy with her to help her eat.  Being a new momma to this somewhat overwheliming bundle, I said sure, I'll sign her up!

But it wasn't that easy.  There was a wait list.  A long one.  So I brought her in faithfully to afternoon weigh ins and nutrition counseling.  What finally got me a slot was the NP seeing me put food in her bottle and Cary Lynn eating it.  I honestly think it horrified her, but I told her she wasn't able to spoon feed.  I got an immediate slot and started feeding therapy that week.

In the beginning it seemed to work.  Cary Lynn was weaned off the baby bottle.  Unfortunately, they put her on this:

I affectionately call it a hamster bottle.  The feeding clinic staff was not amused with this.  But seriously, does this not look like something you put in Fluffy's cage??!  Anywho, it worked and she was off the bottle.  She also begin to grudgingly take some food from a spoon.  I was able to learn to puree table foods and add more variety and calories to her diet.

But the problem is that Cary Lynn has sensory disorders that make her very sensitive to lots of things, including food.  Her gag reflex is weak and add in the fact that she has CVI and can't always make out what she is being fed visually you have a recipe for disaster.  Plus a wonky GI track.

It seemed like we'd get one problem solved and another would pop up. Over and over. She would get sick and loose weight, get constipated and loose weigh, decide that the planets were misaligned and loose weight. I just started to hate meal times, gatherings that involved food, and I was frustrated with feeding therapy.  I mean weren't they supposed to fix this??  Things just kept getting in the way.  I just felt like I was failing my baby girl.  Over and over.

Cary Lynn got really sick last winter and as a result we introduced a new way of eating.  The feeding tube or g-tube.  It was and is a blessing and a curse all at once.  Observe exhibit A:

 What you see, a sleeping baby.  What I see, oh crap she is going to miss another flipping feed time because she is out like a light!!  My child sleeps like the dead.  In fact I am sure there is scientific evidence to support that it is easier to wake the dead somewhere.  Her doctors all say, "Well Mrs. Fields, you must keep her on a strict schedule and well stimulated to keep her waking and sleeping times separate."  Ha!!  First of all, I would love to have her on a "strict schedule" but I have to come see you during her nap time because that is the only time in the world you are available.  Second, have you met my child?  She is headstrong and stubborn, traits that I love more than anything, but when she is done she just knocks out.  Period.  It doesn't matter what I put in front of her.  She is toast and responding to her body's needs.

So some days she eats this way:

With these tools:

I put food or formula in the syringe and go to town.  The downside of this is that she looses a chance to eat orally, she learns that she can be fed and not have to put any effort into it, and feeding clinic is like, "well you have a back up so we don't have to try as hard with orals."

What it all boiled down to is we came in once a week, Cary Lynn bit therapists, refused to eat, and threw up on them.  Nice.  Over and over.  She also didn't respond to any motivation.  Like music, bubbles, toys.  So her therapist and I had a long overdue conversation.  It was hard and we both cried.  So for this season we are stepping back.  Cary Lynn has been trying to tell us in every way possible that she just isn't ready for this. Don't get me wrong, we will continue to eat at home and I also will be learning more about a blederized diet for times when she just isn't able to eat orally.

I don't feel bad about it or guilty.   What I DO feel bad about is that I kept doing this weekly just for the sake of doing it.  That in itself is wrong.  Cary Lynn can eat.  When she wants to:).  I mentioned stubborn right?  But for now we are going to slow things down and take it at her pace.  We're going to make eating fun and not a horrible task that must be completed daily.  She has enough of those.  This does not have to be one of them.  My child will eat, but she will do it when she is ready, and that's the way it should be.

Knowledge is Power

So imagine with me that you are deported to a new place.  Your past has been erased and you are merely told that you come from a healthy people and that everything is groovy.

Well that is all fine until you get sick and need a doctor.  If you happen to ever visit a doctor what is the one thing that they look for?  Yup, family history.  But you explain that you are from healthy people.  The doctor then looks at you like you are smoking crack and demands to know if you know anything at all.  He tells you that this is important.  That no matter what others have said this matters.

Wouldn't you be upset?  I mean what if cancer runs in your gene pool and you need testing or people to look for markers?  Would you be scared?  Angry?  Confused?

But for many people this is a daily way of life.  In the world of closed adoption doors are continually shut on our medical histories.  When I was adopted in 1974 all the agency told my parents is that I came from"healthy stock" (can you say moooo?) and that my biological family wanted me to be raised Lutheran.

Do not get me wrong, I don't object to closed adoption in general.  I think some things are not meant to be aired out in the world and privacy needs to be respected.  But I would like to take a second look at medical records being forever withheld.

For years I would go to doctors and not have anything to be able to tell them.  They would press and haggle me and all I could say was "sorry, I just don't know."  It got to be draining to the point where I would dread going and having to go over the same song and dance over and over again.

But I'm one of the lucky ones.  I now have my medical history.  The day that history came to me and I held it in my hands for the first time I cried.  Not because there were horrible things in it, but because I now had answers.  I felt really empowered.  When I went to my pcp last year with that history everyone was so excited!!  She looked at me and said, "Now Mrs. Fields, we know and knowing will help us to give you the best and right care."

It also was important yesterday.  I haven't been feeling too swift for awhile and going to a specialist and giving them my family history helped.  They knew what tests to perform right away and what they may be looking at.  Once again I felt empowered that I have this.

I have been very blessed with all of this.  Not only have I gotten a comprehensive health history I also have some pretty awesome and special new people in my life that I am daily grateful for.  I feel like a puzzle that has all of the pieces in the box.

But for every adopted child who has their records there are so many more who do not.  Who sit and wonder.  Once again I'm not saying that everything has to be aired out.  Some things are too painful and awful to disclose and may negatively impact the adoption.  But it may be helpful to include more health information.  Especially information that may save the adopted child's life.

I have health information on both of my children and it is a huge blessing.  The only things I really can't answer on their forms is the time they were born and if they were breast fed.  And frankly, in the grand scope of things that is peanuts.

I guess at the end of the day I know where I stand on this.  Every child has a right to their medical history. Thanks to times changing on how adoption is perceived more and more adoptions are semi open to fully open.  Laws are changing as well.  A group of my friends at Bastard Nation (catchy title, right) have been successfully lobbying (and some are outright suing) to have access to their records.  Although others may say what is the big deal, when it comes to my health and the fact that I want to be around to see my babies grow up (plus if I bump off Shannon will shame my daughter by not being able to come up with a matching outfit!  I can't even leave him alone for a few hours let alone indefinitely!).

At the end of the day my parents are the two people who took me in and raised me as their daughter.  But my genetic makeup comes from the family strong enough to let me go.  I dwell in two worlds and am a happy citizen in both.  I can only hope, pray and continue to advocate that the day will come that my fellow adoptees are able to have the restoration of their rights and knowledge of their heritage.