And Now we Wait

Ethan had his MRI yesterday (thanks for all the good thoughts for him).  They were able to do it a lot quicker than they thought they would and without any concerns.  They were even able to do it without knocking out his last remaining lower front tooth.  Now we just have to wait for the results to be read, for the doctors to get their copies and for an appointment to see them.  I'll be following up with everyone in the New Year.

I hope 2011 brings joy, love and good health to everyone!

It's Officially a Concern...

This morning we made the trek to the children's ER.  Due to the holidays, we couldn't get in to see Ethan's paediatric dentist nor his paediatrician so we spent the day in the ER instead.  This morning while cleaning his teeth, I noticed he had ANOTHER loose tooth.  Given his MRI is supposed to be on Thursday, I wanted to be sure the loose tooth wouldn't cause a problem with the MRI and to see if they might be able to guide us to some answers as to why he is losing so many teeth.  The dental resident pulled his tooth as it would have maybe lasted until sometime tomorrow but it would likely be swallowed and we wanted to ensure it did not go into his lungs.  It looked just like the one that fell out on the 24th, they have no roots and are hollow.  This should not be happening to someone Ethan's age and he did say we should get in to see his paediatric dentist as soon as they reopen in the New Year and have x-rays done.  Once we have the x-rays we'll see if his adult teeth are under the gums.  Hopefully we'll also get a clue as to what is going on and will be able to proceed from there.  He only has one tooth left of his bottom front four and we don't know how long that one will hold on. 

Happy Holidays

We had a lovely Christmas.  We took the morning opening presents and then enjoyed a tasty meal prepared by one of our neighbours.  Just before we dug into our meal, another tooth was lost...but at least this time it was Lorelei's and at an age where it is expected.



All Ethan Wants for Christmas is his Two Front Teeth...

Do you have any idea how few dentists work on Christmas Eve?  Okay, so I didn't call around a whole lot (kind of hard to do when you would prefer the dentist has some prior knowledge of your special needs child), but I did speak to the children's ER, Telehealth and left messages with the paediatric dentist's emergency number and his paediatrician's office.  I was cleaning his mouth after his steroid inhaler and noticed blood.  The tooth was just barely sitting in the socket for a while and then he gagged a bit and it came loose.  We were able to save the tooth this time.  Once the paediatric emergency doctor called back, he said he wasn't too concerned about this second lost tooth.  And if Ethan were...say 2 years older I wouldn't give it a second thought either.  As it is, now we need to see if there is a medical reason that his teeth are falling out and not one due to adult teeth coming up.

Oddly the crooked tooth that I thought would get too loose...seems to be well anchored.

There is no root to the tooth, but I'm not sure if that is the way the front teeth are since Lorelei still has all of her baby teeth.

Holiday Gatherings

With Ethan having been in hospital, we essentially missed all of the Christmas gatherings we'd been invited to this year.  He did get out of the hospital in time for Clayton to attend Lorelei's JK/SK class performance.  They sang a couple carols and then had a bit of a reception in their classroom.  From the photos he brought home, it seems she had a great time and participated nicely.  You've heard of Dasher, Prancer, Vixen, Rudolph and their posse...but now I'd like to introduce you to Lorelei the smiley reindeer.  And one of the cutest reindeer I've ever seen.  ;) 

Home Again!! :)

I haven't had much of a chance to post before today, but wanted to let everyone know that Ethan came home from hospital on Thursday afternoon.  He has been a bit gooey sounding but we hope he'll do well for his preadmit appointment on Wednesday.  We are keeping a low profile and not doing much or going anywhere really to try to limit his exposure to germs prior to his MRI.  I haven't really snapped many photos since he has been home, but thought I would share the following from his last day in hospital. 

The above photo was taken while awaiting an appointment with his neurologist.  His appointment went well, the neurologist thinks Ethan is stable from a neurological standpoint.  (I love this picture of him!)

Notice the nifty new pj's they have in the new children's section of the hospital?  It's really nice not to see them all in the jailbird (or old man) stripped pj's.  Mind you when we started putting him in the blue pj's all I could think was "Bah-naw-naws in pee-jaw-maws are coming down the stairs".

As we were waiting for his feed to end so we could head home with him, we noticed just how tall he's become.  See him picking at the TV/computer/radio/light control with his left foot?

Hospital Move

All of the paediatric floor was moved today into the new hospital.  Ethan's wing was the last to be moved.  He went from a private room that looked like this:
 

To a private room that looks like this:

I'm not sure you can tell, but the room is quite large now.  That monitor by his bed has many uses.  It is a TV, has the Internet, a phone, plays the radio, has basic games, allows doctors to call up patient information and controls the lights in the room.  The bathroom is large and accessible which is really neat.

They think Ethan is experiencing a continuation of the Bocavirus.  It seems to be common for medically fragile children who catch Bocavirus to go from really poor health, to seeming better, to mild regression in health.  Currently, he is just receiving IV fluids but that will be reassessed later today when they might try him with pedialyte before gradually progressing to his usual feeds.

Day 11...

...and still in hospital.  :(  Ethan was to be discharged this morning but seemed to be feeling off and ended up vomiting six times.  He is back on IV fluids, and not allowed anything by g-tube.  We're joking he wants to be part of the hospital move (they built a new children's hospital and the move is tomorrow), or it is because yesterday the Premier was there distributing Christmas gifts and he wants more...  But in all honestly, our goal right now is to get him healthy enough for a scheduled MRI on December 30th which will tell us what our next steps will be regarding both his scoliosis and the left pulmonary artery/lung.  Please keep your fingers crossed he is able to have the MRI so we can have some more answers.

Lorelei Goes Curly

Lorelei had her first haircut at a regular hair salon a few weekends ago.  The hair stylist did a wonderful job.  Lorelei wanted to have curly hair, so she gave Lorelei what she asked for then spoiled her with sparkles in her hair.  Lorelei didn't want to have her bath that night because it would take away the curl.  She kept trying to convince me to buy a flat iron to duplicate this look...I did not want to let her know mommy isn't so great at hair styling so pushed the angle that it can be something special they do at the salon for her.  ;)  She sure looked cute!

Snowed In

For the past few days we've been snowed in.  Our city has had a crazy amount of snow.  I woke up on day two of what they're calling 'Snowmageddon'.  In the first photo you can see how high the snow is in the back yard.  There's about 2 feet on all the patio stuff, the trampoline is almost 1/2 full, the swings are buried and you can't really tell but Tas (the dog) wasn't really getting out to do his business.  The back stairs were covered with at least a foot of snow and he had to mountaineer his way up.  When I went out last night to free him a path, he'd already started one for himself.  All I could see was his tail wagging in the air (kind of hard to make out since his tail is white too).  The icicles were starting to melt in the sunshine and the big one dripped water into my eye.  Trying to knock them down, one bounced off my cheek...they sure can hurt!  Lorelei wants to play in it but has forgotten her snow pants at school so hasn't been out to play in the snow yet.

The snow on the car was so high that it was about 1 foot above the kitchen window.  My neighbours thought it was a pretty neat sight to see.  Thankfully, my neighbour and his son came by to help dig me free.  They did a GREAT job!  And spared me an even sorer back than I already have from the shovelling I did on Monday afternoon.  I banked the car in the driveway and needed help getting it off the mound of snow I'd stopped on.  Of course all this snow meant I wasn't able to get to the hospital to see Ethan or Clayton.  Thankfully the road crews of London and surrounding municipalities pulled through to clear the roads sufficiently for Lorelei and I to visit the boys.  Were just not sure how long we can stay since more snow squalls are on the way...  This is what greeted us for the first couple hours of our visit.

When he finally woke up I got this...

My little cutie is doing better, they dropped his oxygen again.

He's been staying at 0.5 litres and holding decent statistics during waking periods.  He was dipping lower while sleeping, which is quite common.  :) 

Daddy living on coffee and hospital cafeteria food...at least until I dropped by today with real food for him.

Lorelei was glad to head to Tim's too because she got to enjoy a donut.  Of course she wanted the messiest one and had to wash up after.  Here she's posing in the bathroom door.

What in the world is Bocavirus?

I can tell you some things about it....it is what has brought Ethan into the hospital again.  It is the new 'it' virus and for the majority of us, it is just another strain of the common cold.  But for those with less healthy immune systems it often means a hospital stay (just like RSV).  We brought Ethan to a clinic because he hadn't been wetting diapers much and was vomiting.  I was worried he was starting to get dehydrated.  When we got there, the doctor was more worried about his O2 stats so she sent us to the ER.  Good thing too, as he got much worse through the night.  At one point they were giving him 100% oxygen (with nasal prongs and blow by air) and he still wasn't able to keep his numbers up, they worried he would have to be sent to the critical care unit and were talking about intubating him.  Which would be a 'normal' fix...but not a task easily achieved with Ethan.  He cannot be intubated, and hasn't been for his past surgeries or medical tests.  Thankfully, after many treatments and several last resort meds, Ethan was able to keep his O2 above the 90 mark with the help of oxygen.  Every time he went to sleep his stats would plummet.  We were in the ER for about 20 hours when we were moved to the paediatric floor because they were able to switch off his blow by oxygen and a bed became available.  They have since been able to ween his O2 dependency to 1.5 litres (down from 3 - which is the most they like to give with nasal prongs).  He developed bronchiolitis (from bocavirus) and the mucus in his lungs is too thick for him to move so in addition to all the meds they're giving Ethan saline treatments and are blowing humidity in his face.  It is hard to see him having such trouble, usually he is able to cough up what bothers him and hasn't really require O2 since they weened him in the first month of his life. :(  On a bright side, he is starting to feel a bit better...but we might be here for a while as he fully recovers.

Odd Collections...

We're all guilty of it in some way...we collect (or used to) different things.  For some it is stickers, funky erasers, stamps...growing up I started a shot glass collection.  Each glass had a different image on it, kind of like the little spoons people collect, just in shot glass form.  As I travelled a lot in my younger years, I started a barf bag collection for a friend by writing letters to her on the (unused of course) barf bags during my travels.  But my latest collection isn't really one I want to continue to build on.  It just seems to keep happening...  I guess in all fairness it is more of Ethan's collection than mine...

If you're not sure what you're looking at, it is a hospital band.  We had to bring Ethan to the ER (by ambulance - no sirens/lights) again because he had another seizure.  This one was totally different from the first one and lasted about 13 minutes.  He stopped just as the EMS guys arrived.  Although his neurologist doesn't really know yet (I've left a message for him), the EMS/ER staff think (and so do we) that it was another febrile seizure.  Or to be technical another seizure during a febrile period.  It was a pretty short ER visit though as we were only there 3 hours this time.  It took Ethan a long time to settle again once we got him home, but he seems to be doing alright.  He has an infection at his g-tube site and they think that could have caused the fever this time.

Today is Lorelei's special day at school (they have one a month).  She is to bring in a picture or item which is a sign of fall.  I was thinking to myself in our case it would be a photo of an ambulance since that is the second time we've had to call them.  Of course she went with the more conventional dried leaves and sticks.

We were much calmer this time around, and I think in turn that kept Lorelei calmer.  She was interested to see the ambulance, the EMS guys check Ethan over and then (to my surprise) the fire truck that showed up at our house and their crew who hurried in - and out again quickly since EMS was already on site.  Too much excitement for me, I think Ethan knew I was hoping to go to sleep as soon as he did to try and catch up on some MUCH needed rest.  So much for that plan.  Lorelei did have an exciting night though as she had her first sleep over (a friend of mine kept her for the night).

Where a Child's Mind Goes

Sleep is a commodity at our house...if you're an adult anyway.  And it is even worst for daddy since mommy keeps sneaking in naps during the weekends.  Ethan has been sick with a cold for about 3 weeks now and he has awoken us at least once almost nightly.  He wakes up screaming because he is too congested to breathe.  Sometimes he then has coughing fits and throws up mucous.  It isn't his fault, but it sure makes it hard his parents to get a good night's rest. 

Last night, it was Lorelei who kept us up longer.  She has started to get a cold and is coughing a lot.  She has a sore throat and the coughing woke her up in a panic.  When we went to her she was shaking, crying and coughing.  We tried to help her calm down, give her some Tylenol and even an inhaler to see if that would help her cough.  I'd put eucalyptus in boiling water between the bedrooms earlier in the evening but nothing seemed to work.  She just kept working herself up more and forcing her coughs (eventually to the point of being sick).  She didn't have a temperature, so why the shaking?!  She made a comment last night but then today we talked about it a couple times.  She said she was shaking so much because she was scared.  She did not want to die.  :(  She's somehow gotten it into her head that if she has a fever that means she'll be poisoned and die.  I'm sure there is also some residual concern from Ethan's febrile seizure in September.  I had to explain to her that typically a fever is the body's way of fighting germs, it can be a good thing.  It certainly won't poison you, and if she was that sick we'd rush her to the doctor.  She seemed better about it this evening, but it is sad that this is where her mind goes when she gets sick herself.

Under Daddy's Watchful Eye...

What possible trouble could Ethan get into under daddy's watchful eye?  Here's a hint..

If you can't tell, he has the feeding tube going straight to his mouth.  Since he typically is not orally fed (and never fluids), this isn't the safest thing to do...but it is one of Ethan's favourite things to do.  This photo was taken in October and just this morning I heard Ethan giggling in the room so of course went to check on him.  What do I find, but him with his feeding tube wrapped around his arm and putting it to his mouth.  It was kind of like an I'm getting away with trouble giggle, quite cute to hear...but I did have to take it away from him.  And tonight we're constantly taking it away from him, every so often it becomes this major attraction for him - I wonder if a lot of it isn't the attention he gets when he picks at it.  He has such a great giggle!  It is so infectious.

Check this out...

Over the weekend Clayton was working with Ethan in his Pony Walker.  Ethan really wasn't too keen on the idea at first but warmed up to it after a minute or two.  Lorelei, not wanting to be left out tried to pose with Ethan since she saw I had the camera on him.  I tired to get a video but it was hard with her trying to pose with Ethan each time.  The videos are only of him crying anyway and he just pushed off one time for the camera.  At least you can see how tall he is compared to her, it is pretty neat to see since he isn't usually in an upright position.  Typically when one starts in the Pony Walker the first movements are to push backwards and it can take a long time to get a child comfortable in the walker let alone making steps.  Ethan has been using the walker off and on for about a month but not consistently.

What we can't seem to capture on film is when he actually takes steps.  He would rather pose for the camera.  Which is disappointing since one of his support workers told me this week that he 'walked' from the kitchen sink to the fridge.  :)  He hasn't been feeling well lately so we have not seen him do that again, but it is exciting that he's trying.  She said he used his left foot mostly to propel himself forward.  Now just to get him to use both and I'm sure there will be no stopping him.

Negotiating with a Five Year Old

While driving with Lorelei a while ago, I was trying to convince her of the benefits of the flu shot.  Our conversation went something like this... 
Lorelei: I don't want the flu shot...
Me: I know, but we need to get it, it will keep you healthy.  We don't want you to get sick and we don't want you to catch the flu and make us sick, or your friend (who has no immune system), or Ethan.
Lorelei: I don't like needles!
Me: I know, but we won't go back to that doctor.  I know it hurt when he gave you the flu shot last year.  We're going to Ethan's doctor, we'll all get it at the same time.  If it hurts too much with his doctor we'll go back to our family doctor the next time and continue to only go to her until she retires.
Lorelei: Retires?  What does retires mean?  (Way to change the subject.)
Me: Well, it is when someone is able to stop working because they're a certain age or have done their job for a long time.  (Hmmm...how do I explain this?!)  Pepere is retired.  He used to work for the army but now he doesn't.  He retired from that job.  Umm...I can't think of anyone else you know who's retired.
Lorelei: I think Omi should retire.
Me: Why is that?
Lorelei: So she can move to Canada and spend time with me.
Me: (Can't argue with that logic!) I'm sure she'll love to hear that!  Now don't forget we'll go as a family and you'll be okay.  Daddy or mommy can get the flu shot first if you want.
Lorelei: I do!  Daddy first, then mommy and then Ethan.  But I don't want it!
Me: I know, but you need it.  We all do....  (and here we go again through the whys of it all.)

Not a Concern...

That is essentially what the dentist had to say.  He figured there was trauma to the tooth and causing it to come out.  He thinks it was a clean removal and if there were fragments left, they generally don't do anything about it unless the gums get infected.  Apparently it is pretty easy to pull out a baby tooth and spacing is not an issue with Ethan (he has lots of gaps between his teeth), so we don't have to worry about another tooth crowding the spot blocking the adult tooth from coming out.  The rest of his teeth are secure and he did Ethan's dental exam while we were there sparing us our follow up visit which was scheduled in two weeks time.

What the ?!?

It's not like we haven't had enough stress lately!  I'm not going to go into details right now, but one of our service providers made a decision which has been stressing me out for days.  And what do you know, but we find this tonight...

Ethan's lost a tooth!  And I do mean lost.  We have no idea when, where or how!  I'm positive it was just there minutes before when I was brushing his teeth...but it's gone.  It really is!  Clayton noticed it missing moments after I'd brushed his teeth.  We're not sure if he swallowed it or of the dog ate it or what.  What could cause a tooth in a 2 1/2 year old to come out all the way?  If he'd banged it I would have expected it to chip (it wouldn't be surprising the way he bangs things around his face and shoves things into his mouth), but it is clearly gone and a gaping hole is all that is left.  I've put in calls to his dentist and paediatrician.  How crazy is that?!

Ethan's First Field Trip

I had the great fortune to have the day off for Ethan's first daycare field trip.  Ethan and I met his class at the apple farm just as they were heading out to see the farm animals on site.  The animals belong to other local farmers but are on loan so that the children get to see them close up.  The sheep were more social than some of the other animals, and stayed at the fence for a long time.  It was pretty neat because they were close enough to know that Ethan could really see them.  In the same fenced area there was a noisy cow who I kept pointing out to him and a goat.  After seeing the farm animals, we got to tour their kitchen and headed out for some apple cider (I gave him a tiny bit on my finger, he did not seem too keen on it) and to play on their huge sand pile.  It was Ethan's first experience with sand and I was pleasantly surprised he did not have textural issues with it.  Although his posture leaves something to be desired, you can see him using his left hand to play in the sand.  He was also taking the sand out of my hand and letting it fall to the ground.  I picked the apples for Ethan, and we've been enjoying them at the house the past few days.  They have a wagon style train which brings you around the farm and they loaded Ethan onto the front wagon, stroller and all, so he could see everything.  He got a bit upset when it was our turn to disembark, as he prefers to be in motion.  He really enjoyed his day out.  And I really liked their efforts to make it enjoyable for everybody.  Definitely a place I would visit again with the family.

Emotional Surprises

On my way to work today, I saw two ambulances.  One with lights flashing heading in a different direction as Ethan and I were on our way to drop him off for therapy.  Then just before I got to work I pulled to the side of the road to allow an ambulance with lights and sirens to pass.  I caught up to it later and watched as it turned down a residential road.  Suddenly I felt a flood of emotions.  It was like I was having a flash back to waiting for the ambulance to come help Ethan.  I was quite surprised by it!  I obviously have no clue what emergency they were rushing to, but think I know what the person waiting for them to come was feeling and felt sad for them to have had to go through this.  The other time I've felt a surge of emotions around ambulances was on my first day back to work.  For some reason I got to thinking about how hysterical people sound in movies when dialing 9-1-1...I'm sure there must be exceptions to the rule, but it is true!  I was that hysterical person practically yelling at the operator as they asked questions.  It was only when she said that she'd already dispatched the ambulance that I was able to calm down some and then try to calm Lorelei who was hearing everything but was not in the room with us.  I think I will forever remember her crying and saying she doesn't want her brother to die.  It broke my heart to have her so upset and not be able to do much about it.  Thankfully, I was able to put her mind at ease before the ambulance came.  It was only weeks after that I remembered that Clayton wasn't exactly calm either...it is funny how parts of it are blocked from my memory and have come back well after Ethan was discharged.

Something so little...

How can something so little be so important and cause so much stress?

This is a Mic-Key button for those of you who have never seen one.  The problem with this one is if you look at the lower left portion of it, you can see that it is split open.  That tiny piece is a balloon and the job of this balloon is to hold the button in place for Ethan's tube feeds.  If the balloon breaks, the button can pop out and the stoma (site of the Mic-Key) starts to close up in 20 minutes.  And let's not overlook the fact that if it is not anchored where it should be, then we have no safe way of feeding Ethan.  As you can see from my notes, this button lasted less than a month.  We seem to be going through them like crazy lately.  They typically are supposed to last 3 months.  And I think Ethan had one or two that may have lasted that long, but lately we're averaging about a month with them.  We've ruled out anything internal perforating the balloon, so are at a loss as to why we're going through them so quickly.  We've taken to keeping two spares just to be sure we always have one.  A lesson we learned over the long weekend when his last one broke and we only had the one spare.  In this case I feel it is better to be prepared for the worst (what if the spare is broken or malfunctioning?).  Another mom I know said that she always keeps two on hand as there was a time the newly inserted one broke while they were out of town and someone had to rush home to get the spare.  I guess it might have been easier to learn that lesson through her, but I suppose we all blunder through life at times.  ;)

Despite his Mic-Key requiring replacement, he is doing very well and had some oral trials restarted today.  Here's hoping he handles them well and 'passes' his modified barium swallow study later this month so we can offer him more food by mouth and know he is able to safely handle it. 

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.