Small delights

It's the little things in Ethan's progress that give me joy.  Just yesterday at daycare, Ethan participated in water play...and loved it.  And it got me to wishing I had a camera to capture the moment.  It's the first time I've known of him to participate in water play outside of his bath time and the pool.  Since I don't have a photo of his reactions to yesterday's water play, I'll just throw in a gratuitous photo of him at the pool with Lorelei and daddy.

Home again...

Ethan in his going home outfit just before leaving the hospital and once home on Monday, September 20th.  I think he was quite delighted to be home again and have the freedom to play and not be stuck to an IV.  Ethan returned to his usual schedule on Tuesday and had a great week.  After over a week off of therapy, he was able to tolerate his standing frame for 30 minutes.  I was quite impressed as I expected a bit of a setback in his progress given the length of time he was in hospital.  Although it was a horrible experience, we did receive some good news.  He had another test which confirmed that he is not aspirating his saliva and it is believed that he had a seizure during a febrile period so he may not have another one.  :)

Feeling Better...

Just two days ago you could really tell Ethan was feeling better.  He started picking at his leads and even managed to disconnect one.  TV just isn't cutting it enough anymore, he is tired of laying down and is finding his way into mischief.  All day and night yesterday his IV was ringing off errors and he had to be retaped twice.  He frees his fingers and then somehow the needle shifts in his hand.  In order to protect the IV we've had to try different taping tricks.  After they finally redid all the tubing this morning we were told....

WE'RE GOING HOME TODAY!!!!  :)

Eagle Eye on the IV

This is Ethan's second IV this hospital stay and it took three tries to get.  We're very vigilant in watching it to be sure we don't have any troubles with it.  So far we're doing pretty well.  But it is his preferred hand so we've been whacked in the head by that board taped to the bottom of his hand, he's been sucking on the board and chewing on the IV tubing.  He's even figured out how to play using that hand despite it acting as a splint.  His last IV went subcutaneous so his right hand puffed up like an over blown balloon and it was leaking onto his hand.  His last hospital stay he did the same thing with his foot and you can still see where they had placed the IV and that was back in June.  Since then he's grown an odd lump just above the ankle of that foot...so we're a bit limited on veins we can access should anything happen with this vein.  And thanks to genetics (here's looking at you mom), he has veins that are hard to access anyway.  Here's hoping we actually get to disconnect the IV because it is no longer required instead of him pushing the issue.

More Evolved?

I sometimes wonder if people with special needs are actually more evolved than the rest of us.  That might sound like funny musings, but many things you see, hear and read about people with special needs is how much they love, care and find joy in the 'simple' things of life.  While others of us fret and worry about all sorts of things and often forget to stop and watch how beautiful life around us really is.  Just the other day, I was looking out Ethan's hospital window and admiring the beautiful sun set.  It had lovely bursts of orange, pink and the amazing changes of the sky around it as it went from light blue to almost black.  Even the moon has been a wonder to see as I drive home each night.  So big and a funky yellow colour yesterday seemed so close like we could drive up to it and touch it.  And we're not even at the full moon stage yet.  Ethan grounds me (as many new parents might say - but our stage is lasting longer), he brings me back to the simple things of life with his delightful giggle (which just brings grins of joy to all who hear it) while watching some of his favourite shows or better yet while watching his sister Lorelei as she dances around and makes funny faces at him.  He really does love unconditionally, is delighted to watch the shadow of his hand (as he should be napping) and I hope these are somethings which will not be lost to him as he ages.  Next time you have a moment, watch the sky around your or find a nice shadow producing spot to watch how your hand moves and what each of your fingers can do and hopefully it will put a smile on your face.  It is sad that we've forgotten how to see things for what they are and look for faults or to be happy just because we can.  What got me thinking about all of this?  Well it was a video I saw on YouTube... http://www.youtube.com/watch?v=8zFKFshINuw  As he says, may we all enjoy the love of and feel the love for someone.

Looking Great!

Doesn't he look great?!  Okay, if you've never met my miracle boy you might think...um he's in hospital of course he doesn't look great with all those wires, etc...but let me tell you if you'd seen him less than 24 hours prior, you would agree how great he looks!  That was the event which finally got me off the fence and deciding to start to blog about my dear sweet son (with family tidbits thrown in).  It was also the event which has put the most fear into me since his birth just two years ago.  I thought we'd lost the sweetest little boy you could ever meet that short time ago.  He had a seizure, something he'd never had before, and although that did frighten me it was when he stopped breathing and turned purple that really scared us.  It took what felt like forever for him to recover from it, but he did!  Just the tiniest of coughs and then very slowly he restarted his breathing.  The ambulance was already on its way to our house at that time, and after a brief history of his medical concerns we headed to the hospital for what would turn out to be the above admission.  We're still trying to figure out what caused the seizure but he is on his way to recovery.

This episode has given me a lot of time to think about all sorts of different things.  One of those being given his conditions and the rarity of them I thought it might be nice to post some things as a way to reach out to others experiencing the same types of things.  I remember getting his diagnoses and not really being able to find others who have been down the same road.  I know that still might not happen, but should anyone gain just the slightest bit of hope for their dearly loved child by reading about Ethan, than I'd say this has been a success.  Okay, and it'll be a great way to get family off my back for updates without inundating their mailboxes with information and photos.  ;)

I'll go into more detail about what has happened in the past two years and likely more on this hospital stay, but will save that for another time as it is late and I've got to rest before my next shift at the hospital.