Hey there, It has been awhile!  Life has been super hectic...and I'm glad to finally get back to writing.  I miss it so much when I'm out of touch. 

Cody has finally recouped from the flu he had almost a month ago.  His seizures are dying down after flaring for quite awhile.  His temperment is more smiley and happy again.  It's so nice to see shades of the 'old' Cody.  He's doing some fun stuff too.  In therapy, he's working on a 'diapering routine' where he is required to help in the process.  So when it's 'diaper time' he is shown a photo of a diaper, which triggers him to go get a diaper from the box and hand it to the adult.  He's then told to 'lay down' and does so independently.  The diaper is changed, and he grabs his pants and hands them to the adult who puts them on around his feet - and then he pulls them up the rest of the way all by himself!  This may sound like nothing to some, but it is HUGE for Cody and for us.  The bigger he gets, the harder it will be to diaper him...and this is the beginning of building a routine where he understands the next steps...he plays a part in it...and he builds more and more independence.  Will he ever be potty trained?  Gosh, that's up to God I suppose.  I wouldn't place bets on it.  Maybe someday..............

And until then, we have to continue to think of ways to create independence for him.  It empowers him, and it helps the family.  We're doing the same thing with teeth brushing - he is learning to hand us the toothbrush, turn on the water faucet, etc.  Course we have to do the brushing, but that's okay. 

So many baby steps.  One of his supervisory therapists was talking to me about the diaper routine.  I was telling her that (frankly) it's a hassle cuz it's way easier to just lay him down and do it all myself.  Getting him to this point where he participates willingly took moving heaven and earth - he always protested - which meant screaming, grabbing my hair, flailing.  It was just too big a drama to do 5 times a day!  But she gently reminded me that 'one day Cody is going to be 40 years old...and able to knock you over...and you don't want to be doing this then!'  Course that sprung tears to my eyes...imagining my dear little 'boy' Cody at 40 still needing a diaper changed.  Only he'll be 6 feet tall and big enough to take me out.  So we begin now.  We begin with routines he can remember and play a part in.  And hopefully as the years go by it will build compliance and participation so that one day (fingers and toes crossed) toileting will be possible even with a 6 foot tall man who has a child's mind.

Sigh.

On the flip side of the sadness, is lots of fun with him.  Right now, Cody LOVES to run.  Is there a word that is bigger than loves?  If there is, that's what he feels about running!  I simply must take a video and post it because it is reminiscent of 'RUN, FORREST RUN!'  from Forrest Gump.  Cody, out of the blue and with no warning, will literally vanish!  He becomes a blur of flailing arms and legs , knees cock-eyed, huge wild eyed grin - hands in fists raised to the sky.  And off he goes into the wild blue yonder like a shot.  Sadly, there are almost no places where he can be free to just run on his own.  In our neighborhood or a park, we have to stay close and either grab his hood or his hand so he doesn't run off into traffic.  And in buildings there's just not much room.  But we found the perfect place today - an abandoned strip mall that only has 1 store.  It is yards and yards of open space with nothing in his way.  We took him there today and he literally ran from one end to the other giggling like a mad man.  He was so happy!  So that will be on our agenda often - letting Cody run his heart out.  Casey goes too and runs alongside him saying 'Good job, brother!  You're running!!!' 

That's our new news.  Nothing glamorous.  Just small miracles that we celebrate every day.

Speaking of miracles, I am copying a post from Maggie Doyne who runs an orphanage in Nepal.  I follow her blog regularly (www.blinknow.org).  She recently had a New Jersey med student volunteer at her orphanage for awhile.  He wrote about his experience and it is chilling.  If you have a special needs child, I think this may make you incredibly grateful today for what we HAVE here in the U.S.!  It really gave me a good dose of gratitude for the luxuries I have to be able to take care of Cody.  Here is a piece of the blog from Dr. Frank:

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"It is midnight in Nepal and your child is sick. There is little you can do on your own, having your own medicine is a luxury and the knowledge needed to dispense it even rarer. Getting an ambulance is next to impossible at this time of night because the driver is either asleep, drunk, or just does not care enough to drive out. If you can acquire another means of transportation you have only made it over the first of many hurdles.
The hospital is a room with eight beds. The only privacy is a small screen used to shield you from the face of agony and muffle the sounds of fear coming from the bed next to you. There is only one nurse on duty and she will give you a bed and then write on a small piece of paper what supplies you need to buy. In Nepal hospitals do not give out medical supplies. If you need anything you have to run across the street to the nearest pharmacy, wake up the 20 year old “pharmacist” on duty and pay in cash. Then when you return, the nurse who is not qualified enough to prescribe aspirin will inject your child with a potent pain killer. Keep in mind that she not only has barely spoken to you, but she has no knowledge of your child’s medical history and most likely will not be able to do anything if your child has an allergic reaction.

Now that your child is no longer crying and in pain the nurse returns to her station where she will call the doctor as you wait with a scared child on one side and a used syringe on the other (in case they need to use it for another injection) with your only entertainment being the cockroaches scurrying across the ground and the home made oil lamp made out of a used medicine bottle – the only source of light for when the electricity flickers out. Over the phone the doctor will decide whether your case is serious enough for him to drive in and if it isn’t you will be told that you will have to wait until the morning to be seen. This is an ironic system because the few cases in which he deems it serous enough for him to drive in the patient will most likely deteriorate or perish in the thirty minutes it takes him to get to the hospital from his house."

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Okay, for those of us who make monthly if not weekly trips to the ER with a sick child, can you imagine fighting that system just to get basic care?  I can't imagine what they do for chronically sick children like Cody.  Oh, Lord, let me never take our luxuries for granted.  And everytime I begin to feel sorry for myself help me remember who I should really feel sorry for - those mothers and care givers in countries like Nepal where children so often die from simple dehydration. 

with love,

Shawna