Hello there.  Don and I just finished a feeding using Cody's tube.  We wait until he falls asleep, then sneak in and he didn't even wake up!  So we are on day 4 of successful G-tube feeding.  I can now do it without feeling nauseous.  Well, most of the time.  We're giving him 2-3 'servings' of formula a day - which means a tube feeding in the morning, afternoon and night (after he falls asleep.)  The rest of the day he eats when/if he wants to.  Today he ate some chips, a few bites of an energy bar, a Recees peanut butter cup, some applesauce.  He eats orally now the same amount as he did before the tube - about 300 calories per day.  It's quite a set-up to do the feedings - you need 4 syringes full of formula, a feeding tube, and then cleaning supplies for when it's over.  He's at the point now where he will lay down and if we distract him with enough toys or play, we can do the feedings without holding his arms down.  He fusses a bit at first, but for the 10-15 minutes it takes to feed him, he eventually can be distracted.  So - whew - things are moving right along.

He is 100% back to normal in terms of energy and disposition.  That is a total blessing.  I had secret fears he wouldn't rebound fully.  So far the big downside is that the extra formula has kept him up every night with gas pain.  So I need to work with the nutritionist to switch formulas to one that's pre-digested to see if it's easier on his tummy.  Right now we're using Boost Plus which is lactose free, but not dairy free.  I'm sure a dairy free formula (if they make it) would be best.  Ultimately I will concoct one myself if that's what it takes.  But for now the gastro Dr. just wants us to use Boost Plus because it's the highest calorie per volume - and is the most complete nutritionally.

Casey is FASCINATED that his brother eats from his tummy now.  The first day he cried or hid when we did the feedings.  It does look kinda freaky, I admit.  Lots of tubes and syringes, and I'm sure it seems kind of intense holding Cody down and Cody shrieking.  But then I started saying 'Hey Casey!  Look how cool this is!  We're feeding brother in his TUMMY!"  I told him that it doesn't hurt - but that Cody shrieks because it's just 'different' for him.  So now every time we prepare for the feed, I say 'Casey - want to help?'  And he comes running.  He hold the container where the syringes go when we're done with them - and collects all 4 of them.  Then he collects the tube and hands us wipes to wipe brother's tummy with.  When we're done he helps me wash them with warm soapy water.  Getting him 'in' on the process really made things a family affair - and took the fear away.  Today at church with everyone he saw, he pulled his shirt up and pointed to his tummy, then said 'EAT!  TUMMY!  BROTHER!'  He is amazing.  The most hysterical part was a few days ago when I gave him his own set of a syringe, syringe lid, and big long tube.  I said, 'This is just for Casey - you have your own equipment now!'  and ever since then, he makes Don and I lie down, and he takes the tube and sticks it in our bellybuttons - then attaches the syringe and pretends to 'feed us' in our tummies.  Or if we're not around he'll work on feeding Teddy Bears in their tummies.  I fear when he's big enough to go to friend's houses to play, he'll be the odd man out - all the other kids will bring cars or crayons to play with.  And in will walk Casey with his 'G-Tube supplies' making everyone lie down so he can pretend feed them!  Hah hah!  No doubt he'll cause a stir with his imaginary play!  More power to him - he is a trooper and a true participant in this life of ours.  Yes, it's a lot for a 2 year old to process.  But I'd rather he feels a part of things in a positive way - than have him hide in a corner or shield him when bad things happen.  None of it has ruined his sunny disposition.  Whether it's seizures or G-Tube feeds - he jumps in with both feet - because we set the tone that 'everything is okay.  This is a part of our life and it's not scary.  It's what God gave us and we embrace it and we have no fear because God makes no mistakes.' 

I sat in church today - my first time there in a month due to Cody's seizures and then his surgery.  It was interesting to me.  I told Don, I feel shell shocked from this past week.  A friend of mine said that her daughter's seizures traumatized her and at first I thought that was overkill.  But I do have to agree.  This surgery and it's crazy aftermath just flattened me.  I feel like I've been hit by a Mac truck still.  It was really nice to have a long weekend - but I'm shocked at the toll this last week took on me.  It has been so grueling, so sad, so stressful.  And as I sat in church I found I was just in a daze.  Cody may be back to 100%, but I am not.  And that's okay. 

Our Pastor talked about the word 'purify' in his sermon today.  And I have to say that this recent trauma leaves me simply sort of unable to process it through with the Lord.  My brain is still too much mush to take the 'holy route' and look for the 'positives.'  A friend sitting behind me leaned forward and said 'I heard Cody had surgery, what for?'  Her concerned and loving look sent me right into tears as I explained what was going on.  I hate dissolving into tears - and I think I collected myself before making a scene.  But that's just where I'm at - I can't talk about it without crying....yet. 

When I just don't have the mojo to do the 'positive' mind-setting - I always think of that word, 'purify', because so often I simply just say to the Lord - 'I don't want this trial.  I can't take another step.  I am done.  IF You are going to keep him in this -- I simply surrender to the purification of this process.  I give myself over to be cleansed and purified by this pain.  I will let it simply 'be' and not try to figure out the 'whys' -- I will just yield to it's purifying fire.'  And that simple admission somehow frees me.  Tears are cleansing.  Pain is purifying.  And very soon - I'm sure this past week will be a distant memory.  Until then, I'll dissolve if you look at me with compassion and ask how I'm doing.  So instead, just tell me a funny joke or say something sarcastic - works much better.  :) 

Thanks again to those who prayed and emailed - we know that things are moving forward in a much better direction for Cody.   

Love, Shawna