31 for 21... where else would you sit?

Anyone else have Monty Python running through their mind?

(Micah's glasses are next to Nathan's elbow.  Said glasses were removed by Matthew.  Those same glasses were purposefully snapped in two a couple of days ago by the little boy with low muscle tone and slow development of fine motor skills.)

31 for 21... to be continued...

I had a few friends on Facebook ask some questions about Down syndrome so I'm going to answer them here.  One person asked about whether individuals with Down syndrome can have children.

I was planning to address that question tonight, but we have some water in the basement and had to tear out some carpet this evening.  I'm not quite up for posting tonight so I'll work on this one tomorrow.  Gnite!

Edited to add: Michele, could you please repost your comment from the posting about Micah walking?  My cursor moved and I mistakenly deleted it rather than publishing it and now it's gone. :-(  As a reminder, you commented to Anonymous about being part of a support group.

31 for 21... Why doesn't Micah walk yet?

My friend, Colleen, asked for more information about Micah's lack of walking (Thanks for asking! It's awareness month, after all, and I'm happy to address any and all questions about Down syndrome or Micah).  Yes, that's right. Micah will be three years old in January and he still doesn't walk. He hasn't taken an independent step. But he's starting to pull away and stand by himself, which is progress.

There are four contributing factors to the *general* delay of walking in kiddos with Down syndrome (keep in mind that there is a huge range, just as there is in typically-developing kids, but the mean age is later and thus the range is larger):

1. Hypotonia
2. Ligamentous laxity
3. Decreased strength
4. Short limbs

(I'd like to add "stubborn" to the list, in direct contradiction to those of you out there who think that children with Down syndrome are always sweet and happy...) :-)

Hypotonia is one of the first indicators of a need for testing when a baby is born without a prenatal diagnosis of Down syndrome.  Our kids can be referred to as "floppy" at birth.  As they grow, it often takes longer for them to be able to pull their head off your shoulder, push up on their hands while on their tummies, etc.

Physical therapy needs to be viewed long-term.  Kids who have hypotonia have great opportunities to "cheat."  For example, they can go from tummy to sitting by doing the splits.  So, it's important to teach them the proper way to do physical movements that will build their strength rather than just letting them take advantage of their flexibility.

Micah has fabulous posture.  I credit that to his early work with his PT in Wisconsin.  She didn't let him cheat.  She made him work.

When we were in Orlando at the NDSC convention in July, I attended a six-hour seminar with Patricia Winders, PT.  And we had the privilege of her evaluating Micah's walking skills while we were there.  She's done a lot of work with kids with Down syndrome over the years.  Here's an article she wrote back in 2001.  There's a bit more to update since then, but I won't overwhelm you with reading.

But here's a breakdown of the average age when walking occurs:
27% by 20 months
54% by 32 months
15% by 32 months
4% by 58 months

So, 96% are walking by 32 months.  Micah is definitely an outlier.  But he's getting closer.  One of the things that will be a big barrier now is that he's getting close, but he's also getting ornery.  Yes, it's true.  Micah is officially a "terrible two."  He has learned the power in the word, "no," and he is using it.

Micah wears orthotics called Sure Steps.  He's had them for almost a year.  They are made of a flexible plastic that stop at the ball of his foot, so they support his ankles, but don't inhibit him from doing a toe push-off.  He became much more confident standing up (holding onto something) when we put them on him last December.

Micah is starting school soon (January at the latest, but maybe for a couple of weeks in December).  I'm hoping that being around other kids his age will motivate him.  He might do better being pushed by someone other than myself.  He's doing better.  And he'll get there... at his own pace.

31 for 21... Pregnancy and Infant Loss Remembrance Day

It's almost ironic that this day falls in the middle of Down syndrome awareness month.  We lost twins in 2006.  It was horrible.  It was the worst day of my life.  And it didn't get any easier for me as the months passed and it seemed we were back into our infertility struggles.

After months and months of waiting, we finally made the leap to IVF.  There was a lot to decide.  I won't bore you with all of the details.  But the process was beginning.  I had my mid-cycle ultrasound and bloodwork and I then started my shots.  After 8 days I just didn't feel right.  I took one of my leftover pregnancy tests.  Turns out that not only did God not want us to raise the twins, but He also didn't want us to conceive our next child through IVF.  I was pregnant... with Micah!

I miss Joshua and Eli.  It still hurts to see toddling and preschool twins.  They would be four this Christmas.  I wrote a lot more about them (and this remembrance day) in last year's October 15th post.

I'd like to ask you to pray for the families who have lost children, whether that be through miscarriage, stillbirth, or and infant death.  And if you feel led, light a candle at 7:00pm wherever you are.  If you are grieving the loss of a child, I'd like to encourage you to share your grief with God... He can handle it.

31 for 21... Down syndrome creed

Down Syndrome Creed
(author unknown)

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains

I was sent here among you
To teach you to love
As God in the heavens
Looks down from above

To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns

That judge me by standards
That man has imparted
But this family God's chosen
Will help me get started

For I'm one of the children
So special and few
That came here to learn
The same lessons as you

That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start

The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

31 for 21... will someone rescue her?

About a month ago I began a blog posting about international special needs adoption.  I'm not finished with that posting yet.  But stay tuned.

And until then, I just have to share a blog posting from a blogging and Facebook friend who shares about Tori.  She's in a mental institution overseas because she has cerebral palsy and "aged out" of the orphanage (not at age 18, mind you... at age 4 or 5 it happens there).  Do you know what that means?  It means, most likely, that she will be confined to a crib the vast majority of every day (if not all day).  She will not receive therapy or schooling.  She will wither away and die.  Why?  Because she's not "perfect."  And over there, it's perfectly acceptable to just throw her away.

http://thenewfaceofdowns.org/adoption/tori/

Are you Tori's forever family?  If not, would you consider helping by contributing to her Reece's Rainbow fund?

31 for 21... three years ago today...

It's been three years since I got the call.  The words were, "Hello, Jennie, this is Dr. H. I have the results from your amniocentisis and I have bad news for you. Your baby has Down syndrome."  I started this blog the next day.


There's been some research done that shows that a woman remembers receiving the diagnosis the same way someone remembers where they were on 9/11.  I'll share a link to a video (though it's not working for me right now).
http://www.ndsccenter.org/physiciansguide/ (click on "For a greater understanding of the importance of your role, please click here")
She remembers the wording almost verbatim 20 years later.

So to the doctors out there... Please choose your words carefully.

At the time we received Micah's diagnosis, we already knew he had duodenal atresia (that was the main reason we chose to get an amnio... we didn't want to be worrying about Down syndrome when he was in surgery after he was born).  We didn't know about his heart defect (that was found a few weeks later).  When we found out about the heart defect, it was like another dagger.  We had dinner in Milwaukee that night with my bro and his then girlfriend (who is, thankfully, now our sister-in-law!) after our "tour" of Children's Hospital.  I don't think I had many tear-less moments that night.

All of Micah's medical stuff has been much more burdensome than the fact that he has Down syndrome.  I look back on three years ago and I wish I hadn't spent so much time being sad.  Micah's pesky and perky extra chromosome has brought many blessings to our lives.

31 for 21... Matty B

Have you ever seen this little rapper kid?  Very cute (though I'm sure he'd rather I not use that descriptor).  And how sweet of him to do a song about his adorable little sister!
(If you're reading this blog posting on email, you'll need to click through to my blog to see the video)
(And if you double-click on the video, you can see the full frame on YouTube)

31 for 21... a poem: Take a Walk In My Shoes

I still have a sinus infection and feel crummy.  So I'm "punting" and copying April's posted poem today (I had the privilege of actually meeting April in Atlanta at the DownsEd conference in September!).  And I'm pretty sure this poem will bless you more than any words I could type today.

TAKE A WALK IN MY SHOES

by Susan Drumright

I am a kid with Down syndrome. It is not something I could choose.
I'd like you to know me better. Would you take a walk in my shoes?


Down syndrome affects my body from my muscles to my brain.
But I'm more like you than I'm not. Come with me and I'll explain.


Let's take a walk together and you can see things through my eyes.
Look we both have Nikes on and we even wear the same size!


As we walk listen carefully, I'll be teaching you about me.
Together we can have some fun, but your help will be the key.


Be patient as I am talking. I often get tongue-tied.
If you can wait long enough, you'll see we're the same inside.


In school I'm often frustrated, learning stuff that's new.
Learning isn't as easy for me as it seems to be for you.


So if you see that I'm in trouble and I need a little clue.
Try drawing me a picture or showing me what to do.


Don't worry if I tell you, "No thanks, I don't want a hand."
I like to do things for myself. My motto is: "I CAN!"


But you can always help me by cheering for my success.
Just like I'll cheer for you when you score a goal or ace a test.


Smiles, hugs, pats-on-the-back...they all make me grin.
I'll give back all these things to you, multiplied by ten.


My world is full of fun things, like movies, pizzas, swings.
It's great to have a friend to share in what each day brings.


Thank you for walking in my shoes. I wanted you to see.
I really need a friend like you who likes me just as me.



What do YOU do when you meet someone with Down syndrome?  Do you look for something you might have in common with that person?  Or do you immediately go to the differences?

31 for 21... off topic... Nathan

One of my biggest concerns when we received Micah's diagnosis was that Nathan would no longer have the playmate close in age to him for which we were hoping.  It was exaggerated by the fact that we lost twins almost a year before conceiving Micah and that loss was still fairly fresh in our minds.

Fast forward to today.  I do receive little stabs to my heart when I see Nathan playing more with Matthew than with Micah.  And that occurs primarily, I think, because Matthew is a lot more mobile than Micah (I'll address Micah's lack of walking ability in a future post... thanks for the question, Colleen), which is understandable.  But Nathan has figured out that Micah loves to give hugs (well, not to just *anyone*), so he practically bowls Micah over with hugs these days.  It's insanely sweet.

We have learned a bit about siblings of individuals with Down syndrome since I was pregnant with Micah.  And Mark went to a seminar at the NDSC convention in July with Brian Skotko, MD, who is a sibling himself and a huge advocate for Down syndrome awareness (I hope to remember to blog a bit about him this month too).  I think I've already seen a benefit to Nathan having Micah as a sibling.  Nathan fits a lot of the stereotypes of a typical first-born.  He is VERY extroverted and likes to be the center of attention.  I wonder how much worse that would be if there weren't therapists coming to our house every week who spend time focusing on MICAH, not Nathan.  That drives him absolutely insane... to the point that I've tried to schedule most of Micah's in-home therapies while Nathan is in preschool.  But I KNOW that it's good for Nathan to see someone else in our house getting attention that he desires for himself.

We moved to MN a year ago.  Nathan had his first day of preschool in MN on October 12th, 2009.  It was a record snowfall that day.  Here's a pic:

Can you believe that was a year ago?  Today it's 80+ degrees here!!!

Anyway... I have also neglected to post pictures of Nathan's first day of preschool this year, as well as birthday photos.  So here ya go!

First day of school:

The first thing he finds in his new classroom is...

(do you think McD's donated all that stuff? brilliant, yet annoying, marketing, huh?)

 Ah, an art project... my very active little guy loves crafting!

And... Nathan turned FIVE years old in September.  Hard to believe... five years ago I brought home the little boy who made me a mommy (and he was the only one I got to bring home when I checked out!).  For a walk down memory lane... here is a video of us finding out that Nathan was a boy.  We had my perinatologist put the pictures in an envelope and we opened the envelope at a party with some friends.  On the phone on a conference call were friends and family who couldn't be at the party.  It was great fun to have the "gender reveal" be a fun event with everyone. (for those of you who are reading this post in your email and not on the blog, you'll have to click here to go to the blog posting to see the video)

And here's our little burrito

Age one

Age two

Age three

Age four

And the fifth birthday party...

Because it's just not enough to feed the kids cake... I had to make a "candy" cake

Happy birthday, my dear sweet boy.  I love your boundless energy, your love for life, your love for others (including your brothers), your love for God, and your snuggles.

31 for 21... Only 10% go to church?

Okay, I don't know what % of American children attend church.  So I don't know exactly how significant the following statistic is: Only 10% of families with children with special needs attend church.  Why?

There could be many explanations for this statistic.  In some cases, it's probably the family's choice (not "religious," or whatever).  But I'm inclined to believe that the number would be higher if it weren't so hard.

Exactly what's "hard" about going to church?  Have YOU tried to lug your child's wheelchair in and out of the car all day long?  Have YOU had to check the levels in your child's O2 tank to make sure you can make it a few more hours before changing it out?  Have YOU had to mix formula (only available by prescription via mail order) on the road?  Have YOU had to get a child out the door who doesn't want to go somewhere because he's going to be ridiculed for the way he walks/talks/eats (or doesn't)?  Have YOU had to worry about how a nursery worker is going to deal with a feeding pump attached to your child?

Enter Sunday.  A day of rest.  A day to refuel.  And if you're a Christian, a day to worship.  Is it any wonder that families with kids who are differently-abled don't want the hassle of hauling everyone out of the house to go to church?  Especially if it is even more of a hassle when they GET to church.

We are blessed!!!  We attend a church that has a very strong ministry to individuals with disabilities.  When we moved to MN last fall, we had been encouraged to head to two churches, both within 10 minutes of our house.  The first one we visited is where we had enrolled Nathan in preschool.  We headed for visitor parking.  Someone directed our car to a parking spot.  She used a walkie talkie to have someone come to the door to meet us and walk us to the childcare area.  The director of early childhood called in the director of the disability ministry and conversed with the pod leader for toddlers to determine the appropriate room for Micah.  It would have been really easy to just put him in the infants room with Matthew because they were both not walking at that time.

But I appreciate that they weren't interested in "easy."  They were interested in Micah.

So Micah was put in a toddler room (granted, with mostly new walkers so none of them could run over him).  But he stayed there all year as those children became runners.  And he can crawl about as fast as they run now. :-)

But my point is that they had Micah's growth in mind.  And so it is this fall as well.  As we approached "move up Sunday" (when the children move up a grade in Sunday school), I spent some time talking with the directors of early childhood and disability ministries again about how best to teach Micah this year.  There is a super sweet woman who had volunteered in Micah's toddler room last year who asked if she could move up with Micah.  She has now been trained by the disability ministry and she is Micah's Sunday school helper.  She is with him in the 2-year-old classroom during second service every week.  It's much more structured than the toddler room and it's very good for him to be with his peers.

We made the decision to have Micah go to a toddler classroom during third service (when we're in Sunday school) because I just didn't think he could handle two services without down time.  I was planning on picking him up between services and moving him to the other classroom.  But the sweet directors decided it would be a better transition for Micah if he didn't see us between services so Suzy is moving him to the other classroom for us.

All of this is possible because of people who have a heart to serve.  Sadly, not every church is like ours.  So to my friends out there who attend churches who don't have a disability ministry, my question is, "Why not?"  And what can you do to serve the body of Christ through serving families who might find attending church to be more of a burden than a joy?  Take a look at Jill's blog to read some other stories, not as pleasant as ours.

31 for 21... Pregnancy book online

http://downsyndromepregnancy.org/

This is a FABULOUS resource for families who receive a prenatal diagnosis of Down syndrome. The information these lovely individuals have assembled is extensive. And it's wonderful to have it all in one place.

When we were expecting Micah, I spent a lot of time Googling and asking questions on chat boards. Now women who have a prenatal diagnosis can find answers to tons of their questions. They can feel empowered to go to their doctors with (often) more knowledge than their doctors learned in medical school about Down syndrome.

Thank you, contributors, for serving "our community."

31 for 21... Holland is a pretty cool place

Have you read the short story, "Welcome to Holland," by Emily Perl Kingsley?  She wrote it in 1987.  She has a son with Down syndrome.  And she's a writer for Sesame Street.  I cried and cried when I first read this story when I was pregnant with Micah.


WELCOME TO HOLLAND

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.




My only "beef" with the story now is the second to last line: "And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."  No, the pain might not ever go away.  But it definitely doesn't hurt as much anymore.  My latest inspiration from it is this: wouldn't it be great to give tulips to anyone you know who has found out that their child has "special needs?"  Okay, more on THAT later too... don't we ALL have special needs?

31 for 21... a result of the Kennedy-Brownback bill

Two years after the Kennedy-Brownback bill passed, there is now a booklet going to print that will be given to women when they receive a prenatal diagnosis that their baby has Down syndrome.  Unfortunately, the information that has been presented to women in recent years has largely been outdated and has filled women and families with fear about raising a child with Down syndrome.  My hope is that this new booklet will give women and their families more accurate information.

Here's the press release from NDSS.  I'd like to share more, but I'm getting a nasty cold and I must sleep.

But... going forward... does anyone have any questions about Down syndrome (or Micah, specifically) that you would like to ask?  It's Down syndrome awareness month, after all, and I'd really like to share what you want to hear.

31 for 21... our new family

When you get a diagnosis that your child has Down syndrome, whether you receive that diagnosis prenatally (as we did), at the hospital, or after your child has gone home, you *usually* go through some sort of grieving process.  Why?  Because Down syndrome is horrible?  No.  But let's face it... we all have dreams in our minds about what our family will look like.  We might not count on our child becoming President of the United States, a world-renowned cellist, or a CEO.  But we believe that anything is possible for our "perfect" child.  So when we hear that our child is not "perfect" (by the world's standards), we tend to grieve.

I certainly did.  Should you feel inclined, you can go back to those months leading up to Micah's birth to find out bits of ways in which I grieved.  I received a VERY informed piece of advice from a friend during that time.  Andrea advised me not to waste time grieving the little things, like "Micah won't be able to ride a bike when he's five."  As she said, there's time to grieve that later... like when he's five... because I'll probably grieve it then anyway, regardless of whether I grieved it before he was born.  Andrea is a member of my "parents of kids with special needs" family.  There's a subset to that group, and it's my "moms of kids with Down syndrome" family.

Frankly, it's a family I never expected nor wanted.  I was pretty content living in my little "Christian moms of typical kids" family.  But I LOVE my DS family (yes, I know that's not "people first language," but give me a bit of grace here, k?).  I've met some amazing people, all because Micah has Down syndrome.  For example... we went back to WI for the first annual DS awareness walk in the Fox Cities last weekend (see pictures from Saturday's post).  The night before the walk, there was a small event at which Rachel Coleman (Signing Time) shared a bit of her journey.  At the event, I was able to spend some time with some women who have helped me A LOT during the past 3 years since we received Micah' diagnosis.  Meeting some of their children before Micah was born took some of the fear away.

Anyway... here are some photos of some members of our new family.

L to R: Jennifer, Sherry, Debbie, Melanie, Danielle, yours truly

L to R: Sherry, Maria, me, Melanie, Rachel Coleman, Mary, Michelle, Danielle, Debbie

Melanie (our vision-casting walk coordinator) and Rachel Coleman

Melanie and Rachel signing "elk" (if you were to sign "deer," your thumbs would be touching your head... for "elk" your hands are not touching your head)

Anyway... I'm grateful for all of you, my friends of little ones with designer genes.  You bless me beyond words.  I feel privileged to walk this journey with you.  And if you haven't been to a national conference yet, please consider attending next year in San Antonio.  I was blown away in Orlando at NDSC.  I kept thinking, "Wow.  I've never seen a group of parents more passionate about their children." (to those of you not in the "parents of kids with special needs" family, please don't take offense... it's just that when you have to advocate DAILY for your child, that passion you have for your child tends to grow).

31 for 21... Tired

I drove two of the boys home to MN today. Matthew rode with my mom and threw up his lunch en route. Mark is in Chicago at a family wedding (congratulations, Kim and John!) and he will be there for business until Thursday night. Please pray that Matthew doesn't get the yuckies that Micah had.

Micah was much more himself today. I wish he had been more perky at the walk on Saturday, but I'm glad he's feeling better today. Back to therapies you go, little dude. It's too early for these two-week breaks!


- Posted using BlogPress from my iPhone

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).