A Little Something Extra

Tuesday, August 10, 2010

"I only have Down syndrome sometimes..."

Most of my readers who have a child with Down syndrome have likely seen this blog link already.  It's a FABULOUS reminder that our kids are not to be defined by this pesky and perky extra chromosome.

But we ALL can find some great encouragement through this post.  The root argument is that for those of us who are prone to over-parenting our children... don't.  And don't put them in a box based on a diagnosis... or a character trait... or birth order... or whatever.

I'm definitely not saying we should have a boundary-less parenting philosophy.  I think the key is having the wisdom to know when those boundary lines can be pushed out.

Thank you, Dave Hingsburger, for eavesdropping.  You shared something we ALL need to hear.

Monday, August 9, 2010

Orlando Photos - Miscellaneous

This looks says, "Smile? Are you kidding me? It's over 100 degrees out here!"

Yay!  We got to meet Laurie and Chase (and the rest of the fam too)

Some random hotel photos... Matthew in my sandals

and Micah being a cheeseball

I took this photo of a promo for I'm Down with You and look who was talking on his mobile phone on the side of the banner.  Yes, that's Chris Burke.  Don't know who he is?  He played the role of Corky in the series "Life Goes On."  Still don't know who he is?  Eek.  I'm old.  Or you're young.  Or weren't allowed to watch television back then.
Cathy McMorris Rodgers spoke on Sunday morning.  She was great!  My favorite quotes were, "I believe God sees us ALL as disabled," and "Happiness comes from purpose beyond self."  Oh, how true!  And how I wish I lived that out every day instead of spending too much time trying to find happiness for myself rather than trying to make others happy.

And I got to meet Kathy!  Kathy went through a journey similar to our Micah journey, almost exactly five years before us (prenatal diagnosis, duodenal atresia, AV Canal...).  She was a great encourager to me and it was such a joy to meet her (and her Kara) in person.

The next set of pictures is from the Orlando airport.  We decided to make one last attempt at a family photo since we didn't get one at the Magic Kingdom.
(please overlook Nathan's shirt... it lost a battle with chocolate ice cream)

Orlando Photos - Hollywood Studios

And just when you thought Nathan couldn't like a ride better than the Buzz Lightyear ride at Magic Kingdom, they go and put a 3-D Toy Story ride at Hollywood Studios (it's like a moving arcade game... way cool!).  The waiting line for the ride felt like you were in Andy's room.  It was so fun.  We walked into the building and Nathan's face lit up and he said, "Wow!  We're in ANDY'S ROOM!!!"  This was definitely a time that we appreciated the "guest assistance pass" we received for Micah.  By the middle of the afternoon, the line for the Toy Story ride was 2 hours long.  Fast passes were gone by 1:00, I hear.  But we got to jump into the fast pass line with the guest assistance pass.  Keep in mind that the fast pass line still took 30 minutes!

Handy Manny was the only character we met after our Breakfast with Mickey a few days earlier.  Nathan made Handy Manny's day by telling him, "I just LOVE your show, Handy Manny!" (that's when Handy Manny clapped).  It was very cute.

I mentioned a few days ago when I posted pics of our day at Magic Kingdom that any time Matthew found water, the water found his bottom.  I don't have a picture of what happened five seconds after I took this picture.

But this is the result about three minutes later.  I just let him go to town in puddles for 15 minutes.  He had a blast!

Orlando Photos - Downtown Disney

So... after seeing those pictures, do you think Daddy caved and bought the boy a Winnie the Pooh?

I wasn't there, but it appeared they had a good time!  I spent that day in an in-depth physical therapy session for pre-walking and early walking skills.  I learned a TON from Patricia C. Winders.  She helped us with some ideas of what to do to encourage Micah's walking.  Micah is 2 1/2 and not walking, definitely in the lower quartile of kids with Down syndrome.  The encouraging thing is that what really matters is that the foundation is solid.  It doesn't matter WHEN he walks, just that he walks correctly.  He's getting there.

Thursday, August 5, 2010

Quick Micah medical update

Micah saw his wonderful neurodevelopmental pediatrician, Dr. M, today.  She had some preliminary results from his immunology workup and his PSG (sleep study).  There were apparently a couple of things a bit "off" with his immunology labs, so it appears he might be in for another blood draw.  But I have yet to hear from the immunologist myself but all of the lab results were not back, so that's probably why she hasn't contacted me for a follow-up.

Micah's overnight oxygenation was very good, so it appears he does not have any apnea issues, praise God.  But as I mentioned the other day, Micah would have nothing to do with any electrodes on his head.  So we don't have any EEG readings.  The technician noted that Micah moaned and rolled a lot overnight, which is what he does at home.  Because we don't have the EEG stuff, we don't know whether he actually gets the deep sleep he needs overnight.  I'm waiting to hear back from ENT about what his plans are going forward.

Micah's height is now a concern.  He has only grown 1/2" since he first saw Dr. M last October.  So we get to add some more bloodwork (to check some growth hormones) and a visit to an endocrinologist (Micah also has hypothyroidism, fairly common with Down syndrome, so he probably needed to see an endocrinologist anyway).

We are probably going to add some private physical therapy to Micah's weekly regimen, not because I have any sort of opening in our schedule, but because he needs it.  He is 2 1/2 and not standing independently, let alone walking, and that is definitely "late" by today's standards for "our kids."  I've heard some parents say that the average age for walking is 3 years, but recent data does not show that to be true.

I'm so thankful that we have someone who has a holistic concern for Micah as it relates to Down syndrome.  We are blessed to have had an opportunity to get Micah in to see Dr. M when we first moved here.  She knows many specialists in the Twin Cities and knows which of them have a strong knowledge of "our kids."   Micah's medical issues are a bit more than the average kid with designer genes, so it has been especially helpful to have someone to help me coordinate his medical and therapy needs.  Micah's pediatrician is great too.  I've been impressed with how well Micah's doctors and therapists communicate with each other.

On a separate note, it was sort of an emotional day for me.  It was the first time we had seen Dr. M since Micah's toxic shock experience in April.  It brought back a lot of not-so-good memories.  I've tried to fill my mind today with thoughts of gratefulness that our sweet boy is still with us, rather than dwell on the horror of that experience.  But I even remember it every time I look at his toes.  Why toes?  Well, Micah lost all of his fingernails last month.  They broke off about halfway down the nail bed.  A few of them bled.  As you may know, toenails grow much more slowly than fingernails, so Micah is going to shed all his toenails soon too (he's already lost one... I'm not looking forward to the big toenails coming off, so I'm trying not to let him go barefoot very often in hopes of protecting the toenails).  Ugh.  Anyway... it was a rough morning, re-hashing some of the April events and the pending bloodwork, etc.

Then the memories came flooding back again this afternoon when Children's Hospital posted a link on Facebook to the now-completed renovation of the Emergency Department.  They featured the trauma room.  Curious?  Click here to see where Micah's life was saved.  Would you believe 13 medical professionals (and I) fit in that room?

On to more pleasant thoughts... For your viewing enjoyment, here is a video of Micah going a bit crazy over a toy in Dr. M's office (if you're reading this post in an email, you'll have to click through to my blog to see the video).

And some photos too

Sunday, August 1, 2010

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!