Orlando photos - First day of vacation (July 14th)

Welcome to the Coronado Springs at Walt Disney World!

(yes, those are our Nashville flood relief t-shirts!  I think they made over $250k for flood relief by selling those t-shirts)

And a joyful reunion with our dear friend, Jodi

Orlando photos - Magic Kingdom

Nathan's first time on Main St. USA.  (note... you will unfortunately not find a family photo of us in front of Cinderella's castle... or anywhere else at Magic Kingdom... we had some melt downs)

You will find a theme here.  Anytime Matthew found water, the water found his bottom.

I took Nathan on the tea cups because Mark certainly wasn't going to do that (he goes on no ride that goes in circles).

Small world!  And if you're wondering why the photos don't include the little guys... My mom is a rock star.  After Mark went back to the room to put them down for their naps, she kept them for the rest of the day so that we could enjoy Magic Kingdom with Nathan.  It was a very special day.  I can't remember the last time both Mark and I spent that much time with just Nathan.

Nathan's first rollercoaster (Big Thunder Mountain).  He's hooked!

Mark let Nathan drive!  He loved it, but not as much as the Buzz Lightyear ride (no photos of that, unfortunately).

Orlando photos - Chef Mickey

Welcome to the first of a few posts of photos taken on our trip to Orlando for the NDSC (National Down Syndrome Congress) conference.

We opted for a "breakfast with Mickey" at Chef Mickey (inside Disney's Contemporary Resort).  The food was great!  And the boys (well... two of them, anyway) really enjoyed it.  As I mentioned in last week's post, Micah was not a big fan.

But Oma calmed him down a bit.

Matthew thought this breakfast was pretty great (note... he's signing "please"). We will not harm your stomach by including the photos of him actually trying to SAY "cheese" when he had a mouth full of eggs (which was most of the time he was seated... that kid loves eggs).

Mark was due for a birthday celebration and he got a cupcake.

Micah had a reaction to sunscreen that morning and his eyes puffed up for a few hours.

Nathan was thrilled to meet the characters.  Before the breakfast he told us he didn't want an autograph book, but we figured he would change his mind once he saw the other kids getting autographs.  Good guess, Daddy.

And Matthew?  He just ADORED the characters!

Micah and Logan

It was so great to see the Baeten family in Orlando.  Logan was one of Micah's first play pals when the boys were "little."  Here's a link to a photo of the first time the boys met.  And here are Logan and Micah at the pool in Orlando.

On a separate note... Mark took Micah to his sleep study.  There was no chance Micah was going to let them put electrodes on his head.  So they went with just the respiratory part of the study, which is primarily what they were looking for anyway.  Micah slept very well that night, as did Mark.  Go figure.
(We do not have the results yet.)

Polysomnogram (PSG) this Sunday

Micah goes in for a PSG (polysomnogram, aka "sleep study") this Sunday night.  Ugh.  My child, who screams at the sight of a stethoscope or blood pressure cuff, is supposed to allow some techs to stick a bunch of electrodes on his head and body and have him fall asleep with them on and sleep through the night.  Yeah, right.

Please pray that he is somewhat calm for this.  I almost wonder if it would be better to send Mark with him.  It seems that he grumps more for me than for Mark sometimes.  Also pray that we will have a definitive answer as to whether or not to remove his tonsils (which are obstructing about 80% of his airway, but he's not showing signs of apnea, other than moaning occasionally overnight and waking fairly early in the morning).

Yes, I have pictures from NDSC and lots of information to share.  I hope to post about that soon.  In a nutshell, we learned a lot, met some of our wonderful blogging and Facebook friends, caught up with some "old" friends, and enjoyed the Magic Kingdom (well, *some* of us enjoyed Magic Kingdom).  Okay, maybe I should post at least a couple of pictures.

This is what Micah thought of Mickey Mouse at Breakfast with Mickey

Maybe next time?...

NDSC anyone?

Yes, we'll be there!  Orlando, here we come!  I'm really looking forward to meeting some of my blogging friends IRL (in real life).  And catching up with the Baeten family (we used to live close to them, and Melanie was a great support for me when we learned of Micah's diagnosis since she had walked the path just eight months before us).  Please pray for us on this trip, specifically that Micah would not wig out with all the people and noises... never mind that freakishly large Mouse!  We're also looking forward to seeing some dear friends from our days of living in Orlando.

If you've come to the conclusion that no news is good news, then you're right on target.  Micah has had a few issues since my last update, but nothing significant.  He sees the immunologist today.  Please pray that they have a good phlebotomist.  Micah is a "tough stick" on a good day (he has rolly polly veins, and once they get a vein, they usually don't get enough blood out of one... it's not fun for anyone).  We're hoping that he gets an "all clear" from his septic/toxic shock event from April, i.e. he has no significant immunity issues that would require long-term treatment or mommy paranoia.  I don't know how long it takes to get the bloodwork results back.

On a separate note... I am NOT PLEASED with what is going on with Micah's EI (early intervention) services this summer.  I like to give people the benefit of the doubt and believe that everyone has his best interest in mind, but that is clearly not the case here.  One of the benefits of EI being part of the school systems in the state of Minnesota is that there seems to be a fairly good transition from EI to preschool.  But right now we are experiencing one of the detriments to school-based EI; that is, summer schedules.  Someone has determined that Micah only gets to see a physical therapist ONCE A MONTH over the summer.  Seriously.  My two-and-a-half-year-old who doesn't stand on his own or walk only "qualifies" for once a month?

And it doesn't help that Micah's special ed teacher (who coordinates his services) is transitioning out of the birth-to-two responsibilities and will no longer be working with Micah (by the way... Tim is Micah's absolute favorite and he will miss him tremendously).  Oh, and his OT has moved on to greener pastures so Micah hasn't seen an OT since the first week of JUNE (except for the private OT who sees him for feeding therapy... I tote him up there twice a week and I'd really rather not go more often to pick up PT and OT, nevermind that we're about out of our 30-visit annual maximum with our insurance company).  Rumor has it that someone was quickly hired to take the EI OT's place.  But we have not heard from said therapist yet.  Nice, huh?

I'm doing my best to be patient, but I'm afraid that after our return from Orlando, I'm going to have to set up a time to meet with the director.  This is beyond ridiculous.

And for your viewing enjoyment... a photo of the cheese face!

New SLR for Father's Day

I can't put into words how wonderful my husband is. He's crazy about being a daddy and our boys just adore him. He leads our family well. He looks to God as his source of strength and I am forever grateful for the blessing he is in our lives.

We've considered an SLR camera for a while now. You might remember some of the fantastic photos taken of our boys by our favorite photographer, Heidi. She and her family lived four houses away from us in WI. She came over to take Micah's "newborn" photos after he came home from the NICU. We couldn't take him to a studio due to his CHF (congestive heart failure). So our baby gift from Heidi was a session in our home. And then there were Matthew's newborn pics (that I never posted to MY blog, but you can link to them on Heidi's blog... just go down a few entries).

Anyway... Heidi got a new backup camera and sold us her only-slightly-used backup camera, a Canon EOS 40D. Holy cow! We took some photos with it at the park last night and just on auto mode during dusk (no flash), we could not believe how amazing the pictures are. I reduced the resolution tremendously to post them here, but I think you'll still be impressed.  And this is without any sort of editing, except to reduce the size of the image.

This sand doesn't taste as good as I thought it would...

Just for kicks, here are a couple of videos too.  The first one is a bit over a minute.  Make sure you watch Matthew's landing after he slides down.  The second is very brief.  You might need to replay it to catch the kiss at the beginning (it's only 3 seconds long).  I recommend double-clicking on the video arrow to open a new browser page with youtube because wide-screen doesn't seem to work well when embedded.