Sunday, August 08, 2010

Prayer request

I've brought this up a few times in the past but now is the time to be praying for it.  Jed's GI appointment is this coming Wednesday (9AM).  This is the BIG one!  This will *hopefully* be Jed's tube free day.  I am going to give a call to our family PhD to make sure they sent our GI doc Jed's records from his well visit which document that Jed has been tube free since Feb.  I am hoping that they will accept that.  Jed has to be eating on his own for six months before they will take out the tube, which he has been.  The only problem is that GI hasn't seen Jed for a whole year!  I hope they are going to accept our word for it.  The prayers are needed for several reasons.  One, the appointment is early.  Getting there without traffic takes 45 to 55 minutes.  But it may take much longer on Wed. morning.  Second, because this appointment was made a year ago I couldn't remember the exact date, so it is too late notice for Jeremiah to get off of work to come with us.  That means six antsy children in the doctors office.  And may I note that we usually have longer waits which makes it harder to keep everyone quiet.  Third, for everything to go fine with the actual removal.  From the decision that it will be taken out, to the actual life without the tube in the immediate days that follow.  The actual removal will not be a big deal, because it is nothing more than what we would be doing if we were changing out Jed's tube.  So for Jed it will be easier in the sense that he will only be having half of the 'normal' ordeal that he is accustomed to (it being taken out, but a new one not being put in).  However once they take out his tube they just cover it up with some gauze pads, which we will need to change multiple times a day.  Well, hopefully only that first or second day as I am hoping that his hole will close up quickly.  Yes, Jed will be walking around with a hole in his abdomen that goes from his stomach to the outside world with just a piece of gauze covering it!  That's just a bit freaky for Jeremiah and I to think about, but supposedly it's supposed to be able to close up within an hour or two.  I asked what happens if it doesn't.  Basically they said they have only had two people in the past ten years that theirs didn't close up and needed to come in to get a stitch or two put in.  I asked what's going to happen when he eats.  Well, that's where having to change the dressing multiple times a day comes in. Because if it does take a few days to close up then when he eats he will indeed leak out his food from the hole!  Pleasant thought to be sure.  So do pray that Jed will not be the third person needing stitches :-)  And fourthly, this is obviously something we have looked forward to for a very long time.  It is almost too much to think about that it's finally coming to an end (in a good way!).  But I am a bit nervous.....the what if's.  I guess worse case scenario would be he would have to have surgery again to put another tube back in.  I know it is crazy to be even letting my thoughts go there, but they do go there, and so I need some prayer to calm this mommy's heart of mine.  We have always said that we will throw a big party once his tube is out, and we don't plan to go back on our word!!!  So family and friends, near and far will be invited to celebrate this event at a time yet to be decided.  There will be LOTS of food to be sure!!!  And no, it will not be all GAPS food!!! ha, ha!!!  Sorry but this is just tooooooooo big to not have one major cake to celebrate.  We'll just pick up on our regularly scheduled diet the following day :-) 

And as a total side note, but related to food.....I have been eating eggs daily this past week and realized that I had not had any stomach pain!!!! I have to take some apple cider in some juice to make sure not to get really sick to my stomach, but I haven't done so all week. That is totally amazing.  I am sure it has to due with all the probiotic foods we are eating/drinking.  And on the subject of food and Jed, there will be a time in the next handful of months or at least within a year that we will be doing the GAPS intro diet.  I am pretty convinced that we *will* see improvements with Jed (and the rest of us).  But that means only eating certain foods.  And I do worry that it will freak out Jed and make him not want to eat again.  Now that being said, one of the many reasons we are taking this diet very slowly (I'm known for just jumping in with both feet) is because of Jed.  We are getting him used to the foods we will be eating in real life once the diet is over.  Then we will work our way backwards, slowly taking out certain foods (grains first, milk next, etc.) until we reach the intro diet.  So far things have gone very well.  We overcame a couple of biggies, concentrated juices, white bread, frozen chicken nuggets.  For juice we make him fresh juice, or as a compromise we use bottled lemon juice and honey.  Again, taking things slowly.  I made up my first batch (in a long while) of water kefir and flavored it with fresh squeezed orange juice and some vanilla.  He loves it!  Plus he's drank some milk as well, just a little.  As far as bread and chicken, well I just offer him other foods.  He's not too pleased, but he gets over it.  Plus so far he has been eating all of the other foods I've made.  It's hard for me because I just want to dive in and get it all over with, but I know that would be detrimental.  By going slow we will still be doing our bodies good.  They might not be totally healing, but at least we can keep some symptoms at bay (like my egg 'allergy').  That way when we dive in deeper we keep any toxin die off to a minimum. 

Ok, enough about food.  Just one more thing.  A praise.  We got a call today from UPS to let us know that Jed's Dynavox will arrive *tomorrow*!!!!  Wooo HOooo!!  I am sooooooo excited.  Of course I am sure it will come when Jeremiah is at work, and I won't know how to even turn it on.  I am hoping it comes with an instructional DVD.  This machine has SO MANY capabilities!!  It's amazing and all overwhelming.  You get to choose the layout of the screen, what icons will be displayed, making up folders for larger topics and then putting in the content on what you want in that folder.  For example you can have a folder for "food" and inside it you put which foods you want available for him to choose from.  But there are also these other options for a whole screen shot of a scene.  A scene of the inside of a vehicle for example.  I pick that one because that was the one we were shown in the demonstration.  So Jed can click on something in the vehicle to talk about, or even click on the window to talk about what he sees outside the window.  It's really amazing, and I am most certain that I am making no sense what so ever!  Once we have it programmed for him I'll have to take a video to show you what I mean.  But it;s coming, it's coming, it's coming tomorrow!!!!!  No, I'm not excited at all :-)

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