31 for 21... awareness walk

Wow, what a day.  Today was the first Down Syndrome Awareness Walk in Neenah, WI, and we chose to go back home to the Fox Cities and visit Mark's parents and invite our friends and family to join us on the walk.  I don't know the final numbers, but there were 800 people registered before the event and they were expecting about 1,000 people.  Fabulous turnout for the first year!

We are so grateful to everyone who contributed to our team.  The fundraisers for Micah's Mavericks raised a total of over $1,000 for Down syndrome awareness in the Fox Cities.

The walk coordinator, Melanie Baeten, deserves HUGE kudos (and a nice vacation).  There were many doubters around her, but she had vision and made it happen (along with many other awesome volunteers).

We had lots of friends join us to walk (over 40!!!).  Pictured below is our incredible Melissa, who started helping our family about a month after Micah came home from the NICU.  She was a nursing student at the time.  She has such a peaceful presence about her and she helped keep me sane during Micah's first year and beyond.  She has since graduated and now works at the NICU where both Micah and Matthew "did time."  Melissa brought her mom, boyfriend, sister, and her sister's family (including her 6-month-old godson). 

Here is Melissa (in the white jacket), along with her family and Mark's dad on the left.

Here's our team photo, and it didn't even include all of our walkers as 3 families arrived shortly after we took the photo.

Self-advocate, Eric Edwards, spoke before the walk.  He's amazing.  How many people do YOU know who have worked in the same job for 20 years.  People wait longer in his checkout line at the market because he is such a joy.

Here's Micah meeting Rachel Coleman (founder and hostess of Signing Time... more on that later) before the walk.  He was really tired and slightly confused.  He was also quite distressed because there had just been a lot of clapping.  Micah has "auditory defensiveness."  More on that later too.

Here we go... let's walk!  By the way... it was FREEZING!  The temperature was *maybe* 49 degrees and there was a hefty wind.

Did I mention Micah was tired?  I carried him for almost a mile before Mark took over.  I'll be sore tomorrow!

Nathan and his best girl, Gracie.  Can you tell he was cold?  My little Georgia peach was wearing two long-sleeve shirts (one with a hood), a jacket, a hat, and sunglasses.  I don't know how he could see!

Isn't this a lovely place for a walk?  Lake Winnebago is on the left.  Trivia for you for the day: Lake Winnebago is the largest fresh-water lake contained in one state in all of the United States.

Rachel Coleman, signing "Leah," who is Micah's favorite person on Signing Time.

Still quite traumatized...

This is Brian, holding Lilya and Ruby.  Lilya came home to her forever family, the Zoromski's, in July.

This little 3yr old was the sweetest girl I saw all day (and she had some SERIOUS competition).

Here is Micah with the younger Micah.  And our Micah is smiling.  Can you tell that the clapping and performing were finished?

Poor Rachel... it was so stinkin' cold, but she stuck around to meet every family who wanted to meet her.  Micah finally thought this was pretty neat.

Yes, we had to get Rachel a cheesehead.  Here she is, signing "Cheese!"

31 for 21... I'll give it a shot

Mark is going to flip when he finds out I'm even CONSIDERING blogging every day this month.  His question is going to be, "So what are you giving up?"  After much consideration, I've decided to give up checking others' Facebook status' this month in order to focus more on spreading awareness about this pesky and perky little extra 21st chromosome.


After all... it's Down Syndrome Awareness Month.  And it will be kicked off "live and in person" for us in WI tomorrow (10/2) when we do our awareness walk (it's in Neenah at Riverside Park).  Rachel Coleman of Signing Time will be doing a performance, which is very exciting for those of us whose ears hear, "It's signing time with Alex and Leah. Come and play," in our sleep.

Grab This Button

Last year I took questions about Down syndrome in general, or Micah in specifics.  I'll do the same this year.  So fire away!  I'm happy to share.

On the "Micah in specifics" front... we spent one night in the hospital this week as he's gone over a week with a GI bug.  Given his immunology issues as well as his gut history, his pediatrician determined it was in his best interest to spend a night inpatient for fluids.  Little did she know that the (wonderful) people in the ED at Children's would not be able to get an IV line into him (six tries... not fun).  They resorted to a finger prick to check electrolytes, CBC, etc., and then determine whether they had to pull out the big guns for the IV.  Eventually they decided to just give him high amounts of pedialite through his g-tube overnight and see if he tolerated it.  Fortunately, he did tolerate it and no IV was needed.  But it was a tedious overnight resulting in little sleep for anyone.

(Micah's illness somewhat explains why I haven't yet posted about Nathan's FIFTH BIRTHDAY. I will do that soon, but likely not until I can go through photos and that won't be until we're back in MN).

DS Awareness Walk - Fox Cities, WI

Wednesday, Sept. 22, is the last day you can register to walk with us in Neenah and get a t-shirt.  You can still register up to the date of the walk but you won't get a shirt.  We would love to have more people walking with Micah's Mavericks!  If you'd like to join us, click on the Donate button on the FirstGiving widget to the right here on the blog (from that link, you can join the team, with or without donating).  If you want to walk, please do let me know, even if you can't sign up online.  I'm working on making some hats for our team.

The same link can be used if you'd like to donate to our team, Micah's Mavericks.  After what our little guy went through back in April, we are continuously thankful that we are able to walk WITH Micah and not in his memory.  The money raised through this walk will go toward raising awareness and education in the local community.  The local organization provided us with our first information about Down syndrome.  It was given to us after we received Micah's prenatal diagnosis.

This is the first year there will be a walk in the Fox Cities (WI).  Though we no longer live there, we want to support that community and give back.  We're also thrilled that Rachel Coleman, hostess and creator of Signing Time, is doing a live performance.  Micah is completely addicted to Signing Time DVD's.  We haven't counted exactly, but he must know over 150 signs (ASL) thanks to Signing Time.

We set a fairly high goal for our team this year.  Can you help us meet it?


P.S. I promise to post some new photos soon.  And please pray for Micah as he is feeling rather crummy these days (lower GI and upper respiratory issues make for a very unhappy boy).

DownsEd conference in Atlanta

I had the great privilege of attending a DownsEd conference in Atlanta this week (Thur/Fri). They provided lots of great evidence-based practices regarding learning in children with Down syndrome.

There were 3 tracks from which you could choose: early years (birth-5), childhood, and speech. The speech track was primarily for SLP professionals. I went to the early years. There were 3 speakers that rotated between the rooms and the general sessions. I can't do hyperlinks when posting from my iPhone, so I'll share more info next week. Suffice it to say that I learned a lot of practical things to work on with Micah this year. And I met some Facebook and blogosphere friends! I've been given a two-day extension of my leave of absence so I will be returning home to my guys tomorrow evening. I'm hanging with some dear friends and having a great retreat.


- Posted using BlogPress from my iPhone

"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.

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.

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

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).