It Was a Good Run...

We went for over 4 months without Ethan getting sick!  But that all ended today when I had to bring him in to the pediatrician.  He has a crackly lung (chest infection) and is on antibiotics now.  He has been vomiting, feverish, lethargic and just plain cranky.  And it is so hard to see him sick again!  He did so well for so long!  I tell you, I could get used to him not getting sick!  Especially today, the first anniversary of his emergency brain surgery to re-open his Dandy-Walker cyst.

The funny (?!) thing is that he was supposed to start back to therapy tomorrow.  I guess that is on hold again.

On top of all this, we're dealing with the possibility that he may be outgrowing his cast.  He has been in it for 6 weeks as of tomorrow and it is starting to leave friction marks on his tummy.  :(

Some Cool Firsts

We've been doing a few firsts for Ethan and I think they turned out pretty well.  Over the weekend a friend came out to do some sensory play with Ethan.  He hasn't really had much experience with this kind of play and we weren't sure how he would take it.  Some children are quite sensitive and are really bothered by sensory play.  Ethan has responded like this in the past.  But it is an aspect of him not attending daycare/preschool that has been somewhat on my mind.   Despite the lack of peer interaction, he is also missing out on all that sensory play that kids have in these settings.  I never quite think to set him up with activities so I called on the expertise of a friend.

I was pleasantly surprised  by how much he actually enjoyed himself. 

He played in the bubbles for about 20 minutes and most of the bubbles were gone when he decided he'd had enough.

For the past couple weeks we have been trialing a new walker for Ethan.  Although it has some great features, we're not sure it is the right walker for him right now.  You need two people to load him in to it and that just isn't practical during the daytime when there is typically only one caregiver with him.  And making him wait until both Clayton and I are home doesn't provide him with sufficient weight bearing time as far as I'm concerned.  Anyway, they were coming to pick up the walker on Monday so I thought I would have it ready for them to pick up.

I took him outside for the first time with a walker.  He resisted it, but then did walk a bit.  He did the distance of our front yard and turned around to go back.

Then he tried to venture up our driveway....but since that is not a smooth pave it was more difficult than he expected. He was out for about 20 minutes.

Please excuse my narrative in the video...it is rather high pitched sounding.  :(  As well, try to overlook his fancy sunglasses.  It was a really sunny day and I couldn't remember where we'd stashed his sunglasses so I grabbed Lorelei's.

Correction on Reading Levels...

I showed Lorelei the nice comments she received and she asked about what grade she would be for a certain letter, so we checked the chart and I should have written that she has one more level to go to hit the top of Grade 4 - her level is already part way through Grade 3.  She wanted me to post a correction...  I think she's pretty proud of herself too!

"I am proud of myself!"

Groundhog Day

Ever feel like you're in that Bill Murray movie?  This weekend Lorelei got sick again with a GI bug.  She was sick on Saturday numerous times and once on Sunday and had a bit of a temp a couple times.  I stayed home with her on Monday and since she seemed fine sent her to her before/after school camp on Tuesday.  She came home with a really cute cat face painting but I didn't get any pictures.  (OOPS!)  Then Tuesday night at about 8:30 she threw up again.  It was the only time and she had no other symptoms (besides complaining about her tummy).  She was home again today and has had no troubles.  It seems like a bit of a repeat from last month's GI bug.  We're hoping she is truly over it as we'll be sending her again tomorrow to before/after school camp (provided she remains well).  She was upset today that she had to stay home due to their 24 hour rule as she was bored!

Ethan had an appointment to see what we can do for seating options while he is in his cast.  And lo-and-behold I found out that his wheelchair does recline.  A little DUH moment for me.  I thought it did initially but when we tried to get it to do so when he got his first cast we couldn't get it to recline just tilt at the same 90 degrees.  I had even asked other parents who said the same thing.  Hopefully the slight recline will feel better on his legs and tummy.  But we will still have to limit his sitting as there wasn't a huge improvement.

A Living Puzzle

Just when we think things are under control and that we've figured out what was causing something...Ethan's body does something to show us that he is and will remain a great mystery.  It happened last April when he had to undergo emergency brain surgery because his Dandy-Walker cyst resealed and to much lesser degree (thankfully), he keeps doing it with his teeth.  He lost his first one in September of 2010, several in December 2010, one in June 2011...and now one in February 2012.

This time he lost an eye-tooth.  :(  Lorelei is 6 and 1/2 and still has not lost one of these teeth!  But at least Ethan is a bit older this time and it has been a while since he lost one.  I'm still not too happy about it though.  The tooth is the same as the rest - no root left.  We had hoped that the extra vitamin D he gets was helping to stop him from losing teeth early...  I found out this week that his vitamin D level is normal which is good news though.

On another note, I don't often brag about the kids...but I'm going to now.  ;)  I found out recently that Lorelei can read at a high level Grade 2...she has one more level to go before she hits the start of Grade 3...and she is only in Grade 1.  We're pretty proud of her!

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.