Micah is in the hospital

Wow, all those great updates in that last post must have been too much for our little guy.  Micah fell on the stairs today and twisted his left leg, which resulted in a spiral fracture of his femur.  Micah will be in a spica cast for at least SIX WEEKS.  The cast starts above his ankle on his left leg, goes up to his waist, and then over to his right side and down to just above his right knee (with an open area around his crotch for diapering).  His legs are basically frogged out.


This week, Micah was doing GREAT with his walking.  He took a long walk to the motor room at school on Tuesday and his teachers and therapists were quite excited.  When I picked him up after Sunday school this morning, his teacher was thrilled to report that he spent most of his time on his feet (rather than his hands and knees) today.  And we were just talking this morning about how great it is that Micah is almost defaulting to walking now rather than crawling.


But now... we need prayer.  Micah's orthopedic surgeon told us tonight that he usually sees "typically-developing" kids limp for about 6 MONTHS after their casts come off.  I cry just thinking about what this means for Micah's gross motor development.  We were so excited to finally be getting spring weather so that Micah would be able to play outside, where he has traditionally had the most motivation for utilizing his gross motor skills.  I'm so sad I can hardly breathe.  We've been working so hard...


Anyway, we hope to bring our little man home on Monday.  Mark is doing overnight hospital duty tonight.  I'll update more tomorrow.  And hopefully I'll have time to upload a photo of all 3 boys in their Easter clothes, taken just before the stairs incident.

Micah, one year later

It's been a year since two of the most terrifying weeks of our lives.  Micah almost died of toxic shock syndrome on April 17, 2010.  I saw his BP drop to almost zero in the ER while he was being intubated.  I saw a blood glucose monitor show a reading of 5.  We saw them shock his heart overnight.  We listened to the critical care doc tell us she was "concerned about Micah's ability to survive this," as well as talk about the possible need to put him on ECMO.  I was with him when they did a CT to check for brain damage after the ER blood pressure incident.  He had no pulse in his extremities for hours.  He wasn't "stable" for about 3-4 days.  He was on a ventilator for 9 days.  He checked out of the hospital after a 15-day stay and was almost back to his typical self, though he was a bit tired.

We had only lived in MN for about 6 months when that happened.  But our church family and neighbors (and some nearby family) all pitched in and made those two weeks bearable for our other two boys.  Some friends from our small group at church came to Micah's hospital room at 11:00pm to pray with us.  We had meals delivered to our house starting on day one, even though we didn't know who would be eating at our house while taking care of the boys.

We give the glory to God for Micah's life.  Since that time, I've heard of other children dying of toxic shock, and others who lost limbs, had permanent brain damage or had permanent kidney damage.  Micah was basically unscathed.  I believe there were THOUSANDS of people praying for our boy within hours of the news of his hospitalization spreading through Facebook and church.

So, it's about time for me to update everyone on what our little guy is up to.

Speech - I really need to document his words one of these days.  He loves to talk and he'll attempt just about any word (and some phrases, mostly titles of his favorite books).  He can recite the alphabet and independently identify almost every letter when shown the letters out of order.  Keep in mind that an independent observer might not know each letter that he's saying (i.e. "V" sounds a lot like "B", and "K" sounds like "Tay").  He just started getting the /k/ sound at the end of words (we've been working on /k/ at the beginning of words for a LONG time, but the /k/ sound is way in the back of the mouth and requires tongue strength, which is not his forte).  He can count to 10, including the number "seven," which is impressive to me because it contains three different consonants.

Social - Micah LOVES song time at church.  Last year he would cower in a caregiver's lap and whine.  Now he crawls to the front of the group and does most of the arm movements and smiles constantly.  He looks forward to song time and signs "singing" and "Jesus" almost all morning until it's time to sing. :-)
Micah is a center-of-attention kid and loves to have an audience laugh at him.  Do you think this might be a problem in school?  Eek.

School - Micah goes to a transition preschool class in our school district two days/week for 1.5 hours each day.  I know... it's not much.  But it's great for him.  There are four boys in his class and Micah is the only one with Down syndrome.  Given that he has global delays (gross motor, fine motor, speech, and cognitive), he gets plenty of peer modeling because the other boys are there for one or maybe two of those reasons.  The teacher on Mondays is a SPED teacher and on Tuesdays the class is taught by a SLP (speech and language pathologist).  There is a para in the classroom both days.  On Mondays the OT (occupational therapist) is in the room.  On Tuesdays the PT (physical therapist) is there to work with Micah.  It's a fabulous transition for Micah.  In the fall he will be in an inclusive preschool classroom 3 mornings/week.  There will be 20 children in the class and I think about 4-6 of them will be on IEP's.  In addition to the classroom teacher, there will be a special education teacher and at least one para, I think.  There is an area in the room where therapists come in to work with the kids.

Motor skills - In a nutshell, not Micah's forte.  He's getting much more confident with walking, though it still isn't his primary mode of transit.  But he's a crazy fast crawler. :-)

Eating - My favorite subject. Not.  But, Micah is making progress.  Our biggest challenge continues to be drinking.  He'll take a few sips from a cup if we push hard enough.  But he still coughs a bit.  He needs more practice, so we're working on that.  He's allowing a chewy tube into his mouth on occasion and his private therapists are working on a lot of oral motor stuff.  He drools.  A lot.  Any suggestions?  It drives me crazy.

Immunology - Micah made it through the winter with very little illness, all things considered.  We had two ER trips for IV fluids (one for a brief overnight).  He had a few infections around his g-tube site and a few rounds of antibiotics.  Micah is still testing low in B-cells, which is a primary means for your body to fight infection.  Given that, we feel fortunate that he's done so well.

Ophthalmology - Looks like he might need surgery this summer to fix his strabismus (eye crossing).  It seems to be getting a bit worse rather than better.  Fortunately, it's presenting equally in both eyes, so surgery isn't critical at this time (if one was crossing more than the other, that could lead to amblyopia and that would be bad).

ENT - Nothing new to report.  Tonsils are still large, but there's no evidence of obstructive sleep apnea so the tonsils are staying in.

Cardiology - Micah will get an echo in May.  But all indications are that he's doing fine.  I'm looking forward to going to once a year visits rather than once every six months.  That might not be possible as long as he's still on a heart medication (enalapril).

GI - No issues, barring the stoma site around his MIC-Key button.  It's usually pretty red and occasionally gets infected.  But I bought some ointment I heard about that forms a good barrier on the skin to protect it from leaking stomach juice and it's working well so far.

Sleep - Still not his forte.  But he does seem to sleep better when he gets a dose of ibuprofen in the evening, so I'm inclined to think he has some sort of pain going on (maybe joint pain?).

Endocrine - We did a trial run off synthroid and it was not effective.  His TSH shot up pretty high.  His Free T4 was fine.  But we decided to put him back on the synthroid.

Did I cover everything?  Is anyone still reading?

Sorry I haven't posted much lately.  We've been a bit busy around here.  I hope to update the blog more often this spring, including more pics of our little guys.

Storming the gates...

This post is going to be difficult to read.  There are some children who are heavy on my heart and we need to be storming the gates of heaven with prayers.

Be advised that there is a photo below that you may not want to see.  But really... we NEED to see it.  And we need to DO something about it; not all of us are called to help her family directly, but maybe we can help someone else in a similar situation.

There's a little girl whose mommy went over to Eastern Europe to rescue her from an orphanage.  This little girl was in an orphanage because she has an extra chromosome.  Sadly, many children with disabilities are discarded like trash in some of those countries.  I've blogged about this before.  You might be thinking "same old, same old," post from Jennie.  But this isn't the same.

Look at this little girl.  Her name is Carrington.

When her mom took her away from the orphanage (her "gotcha day," I think), she unbundled her little girl for the first time.  She wasn't allowed to do so in the orphanage.  So she took off her winter garb and found that THIS is what her daughter's body looks like.

How does this photo make you feel?  I've been haunted by it all weekend.  Carrington is three and a half years old.  She weighs 11 pounds.  Yes, 11.  Her body is shutting down.  It's a miracle they got her home to the US (where they expedited through customs and went straight to the hospital).  This little girl is in a fight for her life right now.  It's only by the grace of God that she didn't die before her parents got there.  A friend of Carrington's family has started a blog, so if you would like to hear more about her, visit this blog.  Carrington has six siblings at home and I know her family could use some prayers.

This little girl was not born in a third-world country, friends.  She was born in a country that has hospitals, doctors, surgeons, nurses... but Carrington is the least of the least of these.  She has an extra chromosome.  She has Down syndrome.  Her life was not valuable enough for the individuals who were around her to bother trying to save it.

You didn't think I'd stop there, did you?  I have another adoption story for you.  Do you remember last year when the woman in Tennessee sent her adopted son BACK to Russia with a note pinned to his shirt?  Imagine what happened to adoptions in that region.  After shutting adoptions off for about a year, the Davis family was finally given a court date to adopt Kirill.

Look at this adorable boy!

The court date was last Thursday.  The judge said "no."  Seriously.  She said no.  The reason?  She said that Kirill was "not socially adaptable" due to "his medical condition" (Down syndrome!) and he was better off in an institution than in a home with a family.  Read more here.

The family is appealing.  But would you believe that if the supreme court decides to side with the appeal, the next judge who will rule is the SAME JUDGE who denied the adoption in the first place.  We have a big God.  And He can move mountains.  So we pray.


What do we do with this information about the children?  Are we compelled to action? In Deuteronomy 4:9, God tells us to "watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live."

If God is not calling you to adopt, what will you do to help orphans in their distress?  James 1:27 does not say SOME OF YOU "look after orphans and widows in their distress."  Please pray for them.  Help others who are adopting.  Advocate for the children.

There, but by the grace of God...

I blogged about Lois dying a couple of weeks ago.  So sad and tragic.  I think of her parents often... how Lois spent so long fighting against leukemia, only to lose the battle in the end.  In that post, I mentioned that when we hear of a child with Down syndrome dying, it feels as if a member of our family has died.

It has happened again.  But this time, to a child we know in real life.  A child whose mom sat next to me at our last Down syndrome parent group meeting.  A child whose mom was in Orlando last summer at NDSC to learn more about how to advocate for and teach her daughter.  A child whose mom went to a retreat for moms of kids with special needs at our church last November.  A child whose parents adopted her... chose her... love her.

Ten months ago, we heard a critical care doctor utter the words no parent should ever have to hear: "I'm concerned about Micah's ability to survive this."  I don't know if Mary Jo heard those words from a doctor or if things went too fast for that conversation to even occur.  Elsey, age 11, came home from school on Thursday with what they thought was a GI bug.  They took her to the ER that evening.  She died at 1:00am.

I've been a mess about this.  No parent should have to bury their child.  I don't know what Mary Jo and Winston are going through right now.  But we came very close to knowing just 10 months ago.

The same week we almost lost Micah, there was a little girl, Carly, in Michigan who died very suddenly.  I had visited Joany's blog and read about Carly just a week earlier.  Micah was still on the ventilator when Carly died, but he was stable.  I felt horrible. Guilty.  I don't understand why God spared Micah and not Carly.  Joany and I have over 100 mutual friends on Facebook but I haven't had the courage to "friend" her.

I'm so intensely sad for Mary Jo and Winston.  Please pray for their family in the midst of their grief.  And Elsey... may you rest in peace in the loving arms of Jesus.  We'll miss experiencing your smile and joyful heart.

Matthew and two candles

More photos to come soon.  But I thought I'd share a video of Matthew blowing out candles on his birthday cupcake.  He somehow had it in his mind that he HAD to say "two" before each blow.  Trust me... it repeated many more times than I will share in the video. :-)

Lois

You might remember me posting about Lois in October.  She had leukemia.  She kicked it.  And then it relapsed.

Lois doesn't have leukemia anymore.  Lois died yesterday, peacefully at home.  She was just three years old.


It's difficult to explain to those outside the Down syndrome community that when a child with Down syndrome dies, we feel it at a personal level, even if we didn't know the child in real life.  Maybe that's because, as parents, we exert a lot of energy advocating for our kids.  Yes, we all do that for our kids, whether or not they have Down syndrome. (Just thinking... Am I destined to offend *someone* in this post? yep, most likely).

Maybe it's because our children with Down syndrome are just a little more "vulnerable" than average.  Maybe it's because we have a pretty good idea they are going to experience discrimination and bullying in their childhood and beyond.  Maybe it's because we KNOW those things and we are passionate to try to CHANGE those things.  Maybe it's because we spend so much time helping them reach milestones that typical kids reach without much effort.

For whatever the reason, I feel intense sadness over Lois' passing.  And I know I'm not alone.

Rest in peace, sweet little girl.  Enjoy your snuggles in Jesus' lap.  I can't imagine the depth of sadness your mommy feels because you're not sitting in HER lap today.

Nella's goal

I realize that many of my readers have a child with designer genes.  If that's you, then you've probably already heard about this through the blogosphere or Facebook.

Kelle Hampton has a baby girl named Nella.  She was born almost one year ago and much to her family's surprise, she came sporting an extra pesky and perky 21st chromosome.  Kelle's writing of Nella's birth story is legendary and it's only one year old.

On Friday, Kelle launched a fundraiser for NDSS (National Down Syndrome Society).  She shared photos of some of our kiddos with designer genes.  Page down a bit and you'll find a photo of our special little man. :-)  Anyway... her initial goal was to raise $15,000.  That was done in about 24 hours.  She's raised the goal to $30,000.  And as I write this blog post, THAT GOAL has almost been reached.

Do you want to be part of something amazing?  Consider donating just $5 to help spread awareness that our little guy is more alike than different.  And spend some time on Kelle's blog if you have a few moments.  But I'm warning you... you'll get sucked in.  She's an amazing photographer and has a fun spirit that will cause you to read more and more.

Birthday Eve

Yes, it's been too long since I last posted.  I'm sharing a computer with Mark these days (more on that later), and his need for this piece of machinery is much more significant than my own.  So, though I've downloaded photos from Christmas, etc., I have not had time to edit (aka, shrink) the photos to post on here.

You'll have to settle for one picture of me and Micah, my almost-three-year-old (his birthday is TOMORROW!... well, probably "today" given when most of you will be reading this blog posting).  There's a lot to share about him (i.e. starting school, lots of improvements in speech and gross motor skills, becoming quite the class clown, telling me to "pay attention," completely healthy December, etc.).  But details will have to come later as Mark is going to soon wake up from his nightly power snooze in Nathan's bed (happens every night... Mark falls asleep putting Nathan to bed long before Nathan falls asleep).

Love you, little man.

2010 Christmas card

Here it is... our Christmas card.  Thank you, readers, for encouraging me to show life "as it is" on the card this year.  Don't worry... there are cute photos of each boy inside. :-)

Gift Tag Story Christmas 5x7 folded card

Shop Shutterfly for elegant custom Christmas photo cards.

View the entire collection of cards.

Staph infection

Oh, joy.  Micah has what appears to be a staph infection.  Let me lay down the history.  It started overnight Saturday.  He moaned all.night.long.  He seemed okay Sunday morning, though, so we headed to church (to say the roads were icy would be an understatement!).  Micah started wretching with his lunch.  Here we go...

Sick puppy Sunday evening.  Another night of moaning.  Fever of 101 when not on tylenol.  Off to the pediatrician on Monday morning because I was a bit concerned.  Micah's regular ped was out that day, so we saw Dr. M.
Micah's g-tube site was a bit red, but nothing outlandish.  Ears fine.  But his throat?  Not so much (red spots... looked like strep).  Labs run... CBC within normal range, but looking like he might be fighting some sort of bacterial infection.  Strangely, the strep culture came back negative.  I tried to hydrate him with pedialite through his g-tube all day, but we were definitely "behind on fluids."  His stoma site started leaking mid-afternoon.  Basically, when I pushed fluids in, some of it was leaking around his tube site.  Bad memory of that one (remember April, anyone?).  So, off to the ER for IV fluids.

ER doc (who trained at Children's of WI, just like Dr. H who saved Micah's life in the ER and PICU back in April) ordered x-rays to see if there was something wrong with his tube placement (side note: I so wish I had brought the x-ray orders for Micah's spine x-rays to check for AAI... it would have been fairly easy to get those done during this trip because he was so wiped out he didn't challenge anything in radiology).  Doc also ordered the IV fluids and ran blood cultures (didn't hear anything back from that... I'll check on those on Friday).  I expressed concern over the challenge of getting an IV into Micah (his last overnight stay at the end of September resulted in him actually not getting an IV because they couldn't get a vein).  Micah's nurse called in an experienced pro, Lois, and she got a line into him on the first shot (it wouldn't have worked with a mobile kid... she put it in the top of his foot... but hey, whatever works).

We were out of there in about five hours, which I guess isn't bad, but it's still draining.  Micah slept most of the night, only waking once, which is better sleep than he often gets when he's healthy!  We pushed him through yesterday, trying to stay on target with fluids.

All day yesterday I had noticed that when I looked directly down on mic-key button, it appeared that there was brown stuff inside his stomach.  So Mark and I decided to take out his button, clean it off a bit, and put it back in.  The button was fairly new (I changed it out a couple of weeks ago) and I hadn't ordered a new spare yet so we couldn't change it out, but we wanted to see what was going on.  Probably TMI here, but brownish goo oozed out when we took out the button.  Rut ro.

Called the pediatrician this morning and mentioned the brown goo and that the inside corner of his right eye was red.  Quick trip to the pediatrician turned a bit longer than expected.  For one thing, there was a 2nd year med student with her (it's the second time I've met a medical student who was shadowing her... I love that she does this... and I especially appreciated her telling the medical student that Micah's medical issues were not the norm with Down syndrome).  She was planning to look at his g-tube site after checking his ears.  While looking at his ears, she noticed that he had a little rash with white bumps above his left ear.  I had seen it the day before, but I figured it was his skin reacting to the haircut he had gotten on Saturday.  As soon as she saw that little area above his ear, she proclaimed, "That's staph."  She said that explained the eye thing, the little red bump on his cheek, and the goo around the tube site.  I also told her that he was sporting a red rash on his belly when we were in the ER on Monday.  The look on her face was almost horror.  Or was it disgust that the ER doc didn't do more investigating?

Quick finger prick showed an elevated white count.  So, before we left the pediatrician, the nurses made a solid effort to get blood drawn for a culture.  No way, no how.  They asked Dr. B how to proceed.  Ultimately, it made the most sense to get rocephin (an antibiotic) on board, so he got a shot.  Tomorrow he starts two weeks of augmentin.  She cultured around his tube site, so we're hoping that comes back and shows us exactly what we're dealing with.  Please pray that it's not MRSA (the antibiotic-resistant form of staph).  That would require a sulfa-based antibiotic and I'm terribly allergic to those, as is my father, and I'd rather not experiment with Micah's ability to tolerate those drugs.  Likely port of entry for this round of staph is his g-tube site (stoma).  This is a great example of my love-hate relationship with his feeding tube.  Glad it exists... keeps him alive.  But then this junk happens.

Micah has a LOT of sinus drainage going on (which was the other reason she chose augmentin because that would fight a sinus infection).  I think his tonsils (that obstruct 80% of his airway) make dealing with sinus drainage super uncomfortable for Micah.  He's been drooling all day (I think his throat hurts).  And he's woken a lot already this evening, primarily due to the sinus stuff, I think.  This drainage is an even bigger problem for him, as his swallow reflex is still being developed.

We had been planning on a long drive to our family farms in SE Missouri this week.  We miss my family very much, but we're very thankful that Micah got sick BEFORE we left and not while we were down there.  We would have been over 3 hours from St. Louis Children's.

Sorry to bore you with all the medical stuff.  I'm sure that Micah's immunologist is going to ask me all about this and it's very helpful for me to be able to just point her here rather than me trying to remember all this when we see her in March.

Happy Thanksgiving, everyone.  We have much for which to give thanks.

Well... THAT'S not going to work

Did you hear about the snow in the Twin Cities yesterday?  We officially got 11 inches and it was super wet (and it melted a bit today, but it will not melt anymore this week, I hear).  This first photo was taken from our front door.

I had a retreat at church on Saturday for moms of kids with special needs.  No, they don't cancel stuff up here for a snowfall like this!  It was a great day at the church.  Mark told me before I left that he was going to try taking the boys' Christmas photo in the backyard while it was snowing (aka, he wasn't going to wait for me to come home).  Hm.  Okay.  Have fun with that.  He texted me at noon and called it the "Bah Humbug" photo shoot.

So... Matthew was not excited by the snow AT ALL.

And then a branch above them dropped a bit of snow on their heads.

Micah was getting pretty mad by this point.

Small success in getting Matthew to stop crying

But it didn't last long

The wind is picking up and snow is falling in faces

And finally, Nathan screams, "It's COLD!!!"



Are you waiting for me to share the perfect shot?  Ha!  We'll let you know when we attempt this project again.  Though I confess I'm considering using one of the above shots for the Christmas card. :-)

Free cards from Shutterfly

I read about this promotion from Rebecca at The Bates Motel blog..... 50 FREE Holiday Cards from Shutterfly!


Free? Excellent! Are you a blogger?  Follow the arrow to get 50 free holiday cards from Shutterfly:
-------> http://bit.ly/sfly2010
Mark and I have lived in way too many places since we met.  And we grew up in different places and we went to different colleges.  So our Christmas card list is a bit long.  We usually do a photo card.  The past couple of years I've used Vistaprint because I like making our card myself.  One of the reasons is that I just haven't found a card that I like.  Personally, I like Christmas cards that allow me to express my faith.  Right or wrong, I don't worry about offending someone who may not celebrate Christmas.

But true "Christmas" cards that are classy are more difficult to find than "holiday" cards that are classy.  Shutterfly actually has a link to Religious Christmas Cards and I found some I like.  I'm still undecided on my favorite.  Maybe this one.  It sort of makes me laugh, though, because the actual verse (from James 1:17) says, "Every good and perfect gift."  Good thing it doesn't say "perfect" on the card or I wouldn't be able to use it for our family photos. :-)  I really like this one, but I don't anticipate getting a portrait photo of all 3 boys (I'm hoping for a landscape photo that looks decent).

I also like this one.  But Shutterfly has some fantastic choices for "happy holidays" as well as "merry Christmas" (that don't fall under the "religious" category).  If I wasn't going for the "religious" tone, I think this one would be my choice.  I really like how you can personalize the front of the card to give brief updates on the kids (how convenient that there are three ornaments).  Ultimately, the card choice could be made for me depending on whether we get a good photo of all three boys together or whether I need to use separate photos of each boy (the more likely scenario).  Best case scenario: I get all of the above and can get this card.

Most of those choices assume I'm going "cheap" and not getting the folded card.  But I love that Shutterfly allows you the opportunity to insert photos on the INSIDE of their photo cards as well as on the outside.  So now that I'm looking at all of THOSE cards, I find this one.  How fun!  Four extra spots for photos on the inside.  That would help me a lot as I always have a difficult time choosing photos.

Well, now I just need to get our photo session scheduled.  I'd love to use the "stamp and mail for me" option, but it's a bit pricey when I consider how many cards we send out.  And I have a five-year-old who can apply stickers like the best of them!

Orphan Sunday - will you help Dmitri?

It's November 7th, Orphan Sunday.  In Eastern Europe, there's a special little boy named Dmitri who will be three years old this month.  He's only two months older than Micah.  He happens to have Down syndrome.  Where he lives, it's perfectly acceptable for him to be abandoned at birth because he is "disabled."  He has no mommy or daddy to kiss him good night, just because he has an extra chromosome.

Micah would not have survived a week if he had been born there.

If Dmitri is not adopted before he turns five years old, he will be sent to a mental institution where he will spend the rest of his days without anyone reading him a book or teaching him to count.  Do you wonder what those institutions are like?  Julia and her family recently adopted Aaron after reading about him on Reece's Rainbow.  Yesterday she blogged a bit about her experience there (have tissues on hand when you read her account... it's horrifying).

Our family decided a few years ago that we don't need to keep buying toys, etc., for the cousins.  We give money to charities instead.  Would you consider helping Dmitri find his forever family by donating to his grant fund?  We can ALL help orphans, even if we don't adopt them ourselves.  Dmitri's family is out there somewhere.  And we could help them bring him home.  An adoption from his country is one of the most expensive international adoptions.

There are children who have come home to the U.S. because their forever family didn't have to bear the full cost burden of their adoption, thanks to people like you (and me).

Please help us save Dmitri.  I look at his sweet crossed eyes and I think of Micah, who has been blessed with early intervention for his strabismus.  I long to see a photo of Dmitri smiling with a family.  I just KNOW he'd give the best snuggles a family could ever dream to experience.

Grants from Reece's Rainbow have helped over 350 orphans with special needs come home in the past four years.  They make it easy for you to help.  And for every $35 you donate, you can get an ornament that has the Reece's Rainbow logo on one side and Dmitri's photo on the other side.

Click here to see Dmitri's page and donate.  Don't believe the note that says that he still needs a Christmas Warrior... that would be me!

Thank you for considering this little boy's life as a gift this Christmas.

31 for 21... in costume, just like his brothers

Here it is.  The last post of the month.  I made it through the challenge!  I blogged 31 straight days: some about Down syndrome, some not.  Maybe some of my readers don't remember why this started.  So here's a reminder: There are 31 days in the month of October.  October is Down syndrome awareness month.  Down syndrome is caused by an extra copy of the 21st chromosome.  So... I blogged 31 days for the extra 21st chromosome that is present in every cell in my son's body.

A campaign done by NDSC (National Down Syndrome Congress) this past year was called "More Alike Than Different."  Micah lived that tonight.  He had a BLAST trick-or-treating.  He was not content to be held and watch his brothers conquer the steps to people's houses.  He was struggling to get out of Mark's arms at one point.  We both thought he just wanted to go to me.  But it wasn't the case.  He wanted DOWN and he wanted to stand by the door with Matthew and Nathan.  That was HUGE for him.  And we all know he couldn't have cared less about the candy, of course.  And he didn't hate wearing his costume (sure, he pulled the hood back a lot, but he never cried about it).

On a separate note... Matthew was a trick-or-treating rock star.  This little guy has the strongest personality.  He was determined to walk the whole route, just like Nathan.  He had no idea what he was collecting in his plastic pumpkin (as he's never really had candy), but he loves to walk around the house with any sort of basket and collect things, so this trick-or-treating thing was right up his alley.

Here ends 31 for 21.  There were a few questions asked which I did not have time to address this month.  I'll work on those in November.  And please do let me know if you have any other questions for me!

31 for 21... Reece's Rainbow: Andrea Roberts is hero of the year

Wahoo!!!  The founder of Reece's Rainbow was recently named People Magazine Reader's Choice Hero of the Year.

This post is definitely for my readers who don't have a child with Down syndrome.  Why?  Because if you're "in the club," I'd be surprised if you haven't heard of Reece's Rainbow.

Andrea Roberts founded this super special organization that has found homes for almost 300 children whose parents abandoned them because they have an extra chromosome.  What I find most incredible is that you can help to sponsor a child by contributing to that child's adoption fund.  So even if your family doesn't feel called to adopt one of these children, you can financially help someone else bring that child home.

I blogged a bit yesterday about why this is so important.  In certain countries, these children don't live much past their preschool years as they are usually sent to an institution at age 5 and die before they can grow up.  These adoptive families are saving these children from certain early death.

No, Michelle Z, I'm not trying to tell you what you think I'm trying to tell you, LOL.  But I'm considering becoming a Christmas warrior.  I'll let you know early next week.

31 for 21... adoption

This post is a long time coming.  And there's way more on my mind than I can share in one blog post, but I need to start *somewhere*.


I have multiple Facebook and blogging friends who have adopted or are currently in the process of adopting a child (or multiple children!) who has Down syndrome.  In the countries where these children are born, it is perfectly acceptable to leave a child who is differently-abled at the hospital (or worse).  When children with Down syndrome are born in some countries in Eastern Europe, those children have little if any hope of life past the toddler years if they are not adopted.  Why?  Because in those countries, a child with Down syndrome is sentenced to life in an institution if not adopted by age 5.  At age 5 these children are basically confined to life in a crib with no education or love.


Some of the families who have announced that they are adopting a child with Down syndrome have received CRAZY criticism from others here in the States.  Such criticism includes: "Aren't you busy enough with the challenges of your 'own' children?" and "Why put such a burden on ALL of us in the U.S. with those children who will grow to be adults and drain our country of resources?" "There are plenty of children here in the U.S. who need families... why not adopt THEM?"

I'm not going to answer those questions.  Because those are PERSONAL questions.  Questions that each adoptive family must struggle through and answer within their family.  The decision to adopt is HUGE, whether that be domestically or internationally, newborn or older child, "special needs" or not.


Michael Gerson wrote a column about adoption in the Washington Post this summer (the column has nothing to do with "special needs" adoption, but I found many of his points to be wonderful).  One of the most profound statements he made was, "It is one of the noblest things about America that we care for children of other lands who have been cast aside."  Here's the column:
http://www.washingtonpost.com/wp-dyn/content/article/2010/08/26/AR2010082605232.html

So, back to the adoption of children with Down syndrome.  Did you know that there's a list of some 200 families in the U.S. who are interested in adopting a baby with Down syndrome?  That probably sounds crazy to those of you who don't have a child with Down syndrome.  But for those of you who truly know our family, hasn't Micah's life blessed you already?  He's not even three years old.  He has certainly changed ME.  There is no small accomplishment with Micah, no "milestone" that goes ignored.

So who will take care of the "least of these?"
(Matthew 25:40)

31 for 21... who does he look like?

I have to confess... when I was expecting Micah, I was really looking forward to him having beautiful blue eyes like Nathan's.  And maybe even more beautiful, because many kiddos with Down syndrome have Brushfield spots (small white or grayish spots in the iris).

But Micah doesn't have blue eyes like his brothers.  And he doesn't have brown hair like them (though his blonde is getting darker).  I've seen so many kids with Down syndrome who look a lot like their siblings.  But Micah isn't one of them.  That sort of makes me sad.  Well, maybe what makes me sad is that he doesn't look like his brothers because he doesn't look like his father.

Yes, that's me.  And lest you be tempted to think that's a halo around my head (LOL), um no... that would be the peach fuzz that grew in on my head after the dark brown hair that covered my head when I was born fell out (much to my mother's chagrin, as there was NOTHING she could do with it for the first two years of my life).

On a separate note...
MICAH TOOK HIS FIRST INDEPENDENT STEP TODAY!!!

31 for 21... immunology update

I received a call from Micah's immunologist today (yes, we have another specialist on our list after the April experience).  She was very encouraged by Micah's improvement in his pneumoccocal titers.  Right.  Like you understand what THAT means.

Micah had some labs drawn in July.  There were a few abnormalities found.  The most critical, in the doctor's mind, was that his pneumoccocal titers were low.  Basically, that means that his ability to fight off a streptococcal bacteria was limited (when Micah was so sick back in April, labs ended up showing not just staph, but also strep).  On the standard vaccination list is a series of shots called Prevnar (I think it's four of the ridiculous number of vaccination shots our kids get before they're 18 months old... and no, I don't want to get into a vaccination debate today).

So Micah ended up getting a "bigger gun" vaccination (Pneumovax) after that.  He was supposed to get bloodwork done six weeks after that, but he was sick at that time so we delayed a bit.  Anyway, his titers improved significantly so she feels good about not seeing Micah until March or April.

The other issue that continues to present itself is that Micah has a low level of B-cells.  In a nutshell, it means he's low on antibodies needed to fight off infection.  His doctor will check it again the next time we see her.  But there's really nothing that can be done about it.  It could be a Micah thing.  It could be a Down syndrome thing.  It could be a lingering effect of how hard his body had to work back in April.

Anyway... I'm just glad that the Pneumovax worked, or we might have been looking at IVIg transfusions on a long-term basis.

31 for 21... "Down" syndrome

I'd like to begin by saying, "What a crummy name!"  There's power in a name.  Imagine what the baseline thinking about our kiddos would be if the guy who identified the syndrome had the last name "Upp."

Think of the diagnosis delivery alone: "I'm sorry, but your baby has Upp syndrome," doesn't sound quite right, does it?  Doesn't it sound like it should be delivered in a more encouraging way?  I've actually heard several self-advocates (adults with Down syndrome) refer to themselves as having "up syndrome."

Most individuals with Down syndrome whom I've had the pleasure of meeting definitely have more of an "up" attitude than a "down" attitude.  This might be part of the stereotype that people think individuals with Down syndrome are always happy.  They're not always happy.  They experience a full range of emotions just like everyone else.  In my opinion, the "happy" stereotype is because they tend to not hold onto negative emotions like so many of us "typicals" do.  But that's a subject for another day, perhaps.

Back to the question at hand.  My friend, Jenn, asked me to share about the history of Down syndrome.

In 1866, an English doctor, John Langdon Down, first described the condition, which subsequently assumed his name.  It took until 1959 for a geneticist, Jerome Lejeune, to discover that the condition is a result of a triplication of the 21st chromosome (aka a trisomy).  There are two other rare forms of Down syndrome: mosaicism(2%) and translocation (4%).  Mosaicism is when the extra copy of the 21st is not present in every cell, only some of the cells.  Translocation is when the extra copy of the 21st chromosome attaches to a different chromosome.  Translocation is the only type of Down syndrome that *could* be inherited (though it isn't always).

For a long time, the condition was referred to as "mongoloid," showing the level of ethnic prejudice that existed then.  Individuals with Down syndrome were systematically institutionalized until as recently as the 1970's here in the US (it's still happening in other countries... more on that when I do a Reece's Rainbow post).

There are only a few more days left in October.  Any other questions you'd like me to address?

31 for 21... AAI

We're getting close to Micah's 3rd birthday.  Children with Down syndrome should have a few neck x-rays before their 3rd birthday to rule out atlantoaxial instability (AAI).  Basically, the low muscle tone and lax ligaments that are present in most individuals with Down syndrome can cause vertebrae to become misaligned.  AAI is when the C1 and C2 vertebrae are misaligned.

It's estimated that 10-20% of individuals with Down syndrome have asymptomatic AAI and 1-2% have symptomatic AAI.  From what I've read, the asymptomatic isn't a huge deal, though playing contact sports like football would be a questionable decision.

Micah hasn't had these x-rays yet.  I have the lab order from Micah's neurodevelopmental pediatrician and she recommended waiting until close to his 3rd birthday as it's easier to get a 3-yr-old to lay still on the x-ray table (um, yeah).

Here are some symptoms of symptomatic AAI:
•Clumsiness
•Lack of Coordination
•Difficulty walking
•Walking with an abnormal gait (ie limping)
•Getting tired easily
•Nerve pain or limited ability to move the neck
•Spasticity - tightness in the muscles
•Clonus - muscle contractions or spasms

I'm looking forward to getting Micah's x-rays done.  We met a sweet little girl in April who was at Children's in Minneapolis from November until July after her vertebrae collapsed and paralyzed her.  She's doing great now and is back home in South Dakota.