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.