New Casting

Ethan again decided to use his sleep deprivation torture tactics this morning and woke up around 3:30ish.  We had set the alarms for 5 AM to be sure we were at the hospital for 6.  As you can likely guess, sleep was not something I got to enjoy last night.  He was in pretty good spirits at the hospital as long as he did not have to sit still for too long.  I took this picture as we were waiting for his nurse to check him in.  He was surprisingly patient while his vitals, etc were checked.

I again joined him in the OR before he went under and we made our way to some breakfast and the waiting room.  His casting took most of the scheduled 2 hours and he was in the recovery room longer before they let us join him.  He was still out when we got to see him but he woke shortly after (turning on the DVD player - not knowing it was set on bust - helped him wake in a hurry!  I've never seen his eyes open so quickly!), and was moved to the next recovery room.  We headed off to have the top layer put on his cast, have his back x-rayed and off we went.  We were home earlier than usual.  He seems to be doing well in it and it seems to fit better (with the minor adjustments before the top layer was set).  Since it is the first time we've added a top layer, we went for something a little more fun...

His g-tube site looks pretty nasty in this picture, but it really isn't that bad.  It is irritated for sure, but not infected or anything.

As for Lorelei, she had a good day today.  Probably her best since Friday.  She finally ate again, drank lots of water and had the energy to play and do things.  We're hoping this means she is over the worst of it and on the mend.

Some Family Day

Parts of our country get to celebrate Family Day in February.  It is a nice break between New Years and Easter, but not all employers provide the day to their staff.  Since I am only part-time, I was able to take most of the day.  :)  But it isn't as though we spent the day enjoying it doing family fun things.  We spent it running Lorelei to the doctor to see if it was an infection causing her to be sick to her stomach since Friday.  Turns out it isn't an infection, just a good ol' stomach bug that is holding on.  She was okay for the whole day on Saturday (and we had the gall to believe she beat it), but has continued to be sick and stopped eating on Sunday.  We are doing our best to keep her hydrated, but it is a bit of a challenge.  Water is about the only thing she will take and unfortunately she is returning a good bit of it.  It looks like she's lost weight and we're hoping that she soon turns the corner and feels better.

Not like there is a convenient time for her to be sick (nor do we ever want her to be), but it has been a challenge to make sure someone is with her tomorrow as Ethan heads off to the OR.  Thankfully her uncle and someone who works with Ethan can help out.  We have an early OR time, so hopefully he gets a good night's sleep.

We Got a Date!

I received an email this morning that Ethan is scheduled to go into the OR to have his cast replaced on Tuesday morning.  :)  I'm so thrilled because his surgeon will be away for a couple weeks but we got in before he leaves.  Any good thoughts would be greatly appreciated!

HAPPY BIRTHDAY!

What does the handsomest 4 year old look like as he gets ready for bed on the evening of his birthday?  That's simple, he looks like this:

It was a day of greetings and well-wishes for Ethan, they came in by phone, MSN, through Lorelei (who shared at her class that it was her brother's birthday today) and through me as friends shared their greetings.

Once Clayton put the box of birthday presents near Ethan, it didn't take him long to discover it and dig right in.

The first present he opened was one suggested to us by his Occupational Therapist.  You would not believe the efforts it took for us to track a new one down.  It must be a discontinued item as we started looking before the holidays.  We had found one at Sears but by the time we decided to buy it, it was out of stock and then no longer listed on their website.  We checked all the local stores and then turned our search online.  I found some on Amazon or E-Bay that would ship to Canada but they were over $65 plus shipping.  How crazy is that for a toy?!?  Once we figured out that we would not find it in Canada I contacted a friend travelling home from the U.S.  It was the night before they were heading to Canada and they called around to several stores until they were able to secure one at a K-Mart on route (with a slight detour).  The efforts we don't go through for our kids.  ;)

He did a really great job opening his gifts.  The ones that were wrapped, still required a bit of help but he is so quick with gift bags that I couldn't catch him in an action shot.

And finally, although we've not read it to him yet...here is Ethan's impression of Berenstain Bear's Too Much Birthday!

It's hard work being such a super star.  Happy birthday little man, we love you!

Cast Follow Up

So...Ethan went for his cast follow up appointment and they did cut out more space for his belly.  It is funny, I watched them do it but it really doesn't look like they made much of a difference.  He was so great during his appointment.  He just wore the cool head protectors and giggled while they did the first bit of trimming and ended up falling asleep and staying that way as we did another adjustment to the cast.  There was another child there who was not taking cast removal quite as well.  Lots of screaming!  The different reactions were pretty interesting.  Once they were putting the new casts on this child, it was a whole different story (or stories) as we heard lots of chattering and giggles.

Ethan's appointment ran really late so he missed out on a meal since we did not dare feed him while he was in a seated position.  The bright side of that for Clayton and I is that we should hopefully be able to go to bed earlier tonight.

And now for the bad news from the appointment...the surgeon said that he did not get the kind of correction he wanted.  In fact it doesn't look as good as it did in December.  He said he would ask his assistant to try to find him some OR time so he can remove and redo Ethan's cast.  :(  Meanwhile he wanted to make Ethan as comfortable as he could.  I know the surgeon will be away from clinics for a couple weeks so I imagine it will be sometime in the next week or two.

A quick update on Lorelei, I'm quite proud of her reaction to her latest immunization.  Clayton had said she screamed the entire time before and during her flu immunization until he told her it was all done and we expected a similar behaviour.  But yesterday she went with me for her Chicken Pox booster and didn't even say "OW".  She had told me before that she was nervous about it and I said I feel the same way about needles.  When it was her turn, she sat on my lap, I held her arm and her face away from the needle and she didn't flinch, yell or cry.  She did great!  Even the doctor's secretary said she was proud of her.  :)  As a reward, she got to pick out supper and a treat.  No big surprises on her supper choice - McDonald's!  But she deserved it!

New Month, New Cast

Ethan's casting went well today.  For the first time I was able to join him in the OR before a procedure/surgery.  The hospital he goes to has a program allowing you to be there while they go to sleep for an 'elective' procedure/surgery and we only did the training when he was in for his last cast (I didn't even know the program existed until about a year ago).  I was pleasantly surprised that they let me come in with him since we had forgotten to call ahead to see if we could.  Even up until he was called to the OR, I expected them to say no because they have a pretty tight protocol on when you can go in and Ethan's health puts him in a category that I figured would exclude us.  He did really well going to sleep.  It wasn't that much different than watching him go under for an MRI.  The doctor putting him under was really great.  She sang him a fun song.  I am a little concerned about how he will handle his feeds right now and believe that he likely will not tolerate sitting much (it looks VERY snug around the tummy).

I have not taken a picture of him in the cast yet but did grab one from last night after his bath.

Here he is doing some morning stretches before we got him off to the hospital.

And getting ready for the OR.

When Ethan went into the OR, Clayton and I headed to his neurosurgery appointment.  We went over the MRI results from last week.  As it turns out, Ethan's MRI showed that everything is stable.  His ventricles, Dandy-Walker cyst and cysty.  They're all the same as they were post surgery in April.  She plans to scan him again in 9-12 months.  This is pretty great news.  (And you can bet I've touched wood a good dozen times or more today.)