Hi! Remember Me?

It’s okay if you don’t, most days I’m lucky to remember my own name!  It’s been a while since my last post.

How long?  Well, ah, let’s see…

Look, I can barely remember what I ate for breakfast so let’s just leave it at it’s been a while, okay?

My lack of presence is sadly due to my not-so-nice-friend exhaustion.  I have all sorts of great things I’ve wanted to put down on paper (or computer screen if you want to get technical) but by the time I’ve gotten my kiddos off to bed, I’m right behind them.  Don’t laugh.  You try sitting down to enjoy a movie with your husband only to see the DVD menu followed by the end credits.  He’s seen lots of great movies. I, on the other hand, have seen lots of production credits.

The good news is that no animals were harmed in the making of any film.

Moving on…

What has kept me away?  Why so exhausted?

Hmm…where to start…Ah, yes!  Let’s start at the beginning!

Since August, I have battled my local school district to keep G in the same school he has been in for the past 3 years (and won), rearranged A’s therapy schedule at least 3 times (not by choice), and added all kinds of new tasks to the chore of feeding her (bring on the supplements).  All of this combined has sucked the energy out of me more effectively than a supermassive black hole.

Yes, feeding is a chore.  Since we last visited, A’s eating preferences have gone downhill and taken her weight with it.  We have finally been able to start feeding therapy, but it has been very slow going.  After a month, A is starting to come around and tolerate her therapist working with her directly instead of through me.  Insert sigh of relief here.  Unfortunately, trying to keep her in a seat she will tolerate, distract her enough that she will not run off, and get her to eat at the same time is something of a Herculean task (and I doubt whether Hercules himself could have managed it).

I am in the process of attempting to locate a specific type of booster seat that I know A will tolerate (she uses it in speech and feeding therapy) and it has a belt to keep her in place.  Thankfully, it is actually quite cheap, unfortunately, everyone with in a 50 mile radius of me is out of stock.  Why don’t I just order it online?  Well, I have a hard time justifying paying a shipping cost that is almost half the price of the item.  To that end, I will be going to the store to have them order it so I don’t have to pay the shipping!  I am hoping that if I have the same booster she uses in therapy she might eat a bit better.  Of course, that doesn’t help the root problem, her sensory issues.

Her nutritionist has become very concerned with A’s lack of weight gain.  Even with 2 Pediasure 1.5s a day, A actually lost weight last month.  She grew half an inch, but her weight did not keep up.  I know that may not seem like a big deal, but it put A below the third percentile for both weight and BMI (body-mass index) for her age.  While her increase in height means she is getting calories, the drop in weight means it was not enough calories to maintain her system.  If it continues, her metabolism will slow to the point where she will not feel hungry, will not eat, and her system will start to shut down.  Her nutritionist added Duo-Cal in addition to whole milk and her Pediasure 1.5, but if she does not seem to be responding to this, we are looking at the possibility of a G-tube (feeding tube).

This is not an easy thing to hear.  Bad news about your child’s health is never easy, but this hurt.  It is like a physical, knock the wind out of you blow.  You sit there thinking, “My God. What else can I do?  What haven’t I done?  What did I do wrong? What am I doing wrong?”

The answer to those last two questions in our case is, nothing.  We have done and are doing everything we can to help A.  We have her in feeding therapy to address her textural aversions with food and her problems chewing and swallowing harder, non-dissolvable  food items (i.e. – peanuts and the like).  We have her in OT to address her sensory issues.  I work with her at home, constantly.  Once a month we see a nutritionist to monitor her BMI and growth and to make sure we explore every available avenue to increase her caloric intake in a safe and healthy manner.

Everyone A sees for her SPD has reassured me that we are doing all the right things and that this isn’t as bad as it seems right now.  I am trying, somewhat unsuccessfully, to see the forest instead of just the one tree, but it’s not working.  All I can think, when I slow down  long enough, is that they may have to put a tube in her which means surgery.  My 2 year old little girl who can barely tolerate her clothing and sounds most days is going to have to go through this and it’s not fair! (And yes, I did just mentally stomp my foot like a small child.)

I know that everyday there are people in the world who receive worse news than this, and that I’m lucky that A is as healthy as she is right now.  Logically, I am aware of these facts.  However, my ancestry is heavily littered with Scottish and Irish, not exactly a group known for being cool, logical, or level-headed (especially not all at once).  Now, just to clarify, I don’t fly off the handle in a hysterical fit with bad news.  I just have a hard time reconciling my more logical noggin with my rather stronger emotional heart. Especially when I haven’t been able to fully wrap my head around the situation.

I am hoping and praying for the best, but I have prepared myself for otherwise.  In the meantime, I am doing my best to take it one day at a time, or one hour at a time, depending on the day.

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2 Comments (+add yours?)

  1. rygestop dag for dag
    Nov 12, 2012 @ 13:39:22

    It¡¦s actually a cool and useful piece of info. I¡¦m happy that you shared this helpful information with us. Please keep us informed like this. Thanks for sharing.

    Like

    Reply

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