A Little Something Extra

18/366 - sleepy boy

2012-01-18T22:39:00.001-06:00

Matthew fell asleep watching a movie this morning (I wasn't feeling well... Mark and I have a nasty cold).

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16/366 - Mickey Mouse

2012-01-16T23:30:00.000-06:00

Mickey Mouse is a key member of our family. You might recall that Mark purchased a super-sized Mickey for the boys while I was out of town earlier this fall.

Notice anything about this picture? We cannot figure out who is obsessed with "pantsing" Mickey, but we find him like this frequently (in an effort to show respect for Mickey's modesty, I am intentionally showing you his back side).

15/366 - What?

2012-01-15T21:39:00.001-06:00

I don't need no stinkin' pants!

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14/366 - Kindergarten basketball

2012-01-14T23:00:00.000-06:00

It's so much fun having a sports-lover!

13/366 - Video instead of picture today

2012-01-13T21:26:00.000-06:00

If you're viewing this in your email, you'll need to click through to the blog to see the video below.

We got a Wii for Christmas. Micah used to wake up in the morning and ask for Mickey Mouse. This week he's asking for "Wii" or "Dancing Dora" (meaning, he wants to dance to the Nickelodeon Dance Wii game). Micah doesn't hold the remote, but he loves to dance and he has song preferences, LOL. If you double-click on the video below, it will open it in YouTube and you can see more of Micah. My blog screen isn't wide enough to show the whole video here and I don't know how to fix that.

12/366 - Leah and family and an update on Micah's eyes

2012-01-12T21:13:00.000-06:00

We had a very brief visit with Leah and family at the ophthalmologist today. It was great meeting Asher (the newest addition to their family who came home from Serbia recently) and Angela (who skipped the Step Up walk last fall so I didn't meet her there, but Leah was at the walk with Axel).

Eye summary: Micah will be getting surgery on both eyes to repair his strabismus (eye crossing). It's a fairly simple surgery that takes about an hour. This will not require an overnight, thank goodness. Micah has been hanging out on the border of whether or not this surgery would be necessary for three years now. But today's visit confirmed that it is time. When his eyes cross, they don't automatically straighten quickly anymore (they used to correct quickly). If I understood the ophthalmologist correctly, he will go in and basically detach the inside muscle from the eye, adjust the eye straight, then reattach the muscle (gives me the heebie jeebies).

I should get a call tomorrow letting me know when they were able to schedule his surgery (in conjunction with a dentist cleaning his teeth).

11/366 - Honey bear success!!!

2012-01-11T14:15:00.000-06:00

For those of you outside the "feeding challenged" community, you'll recognize this as a container for honey. But put a straw in it and you have an oral motor feeding tool called the honey bear cup.

Micah recently figured out how to suck from the straw in the honey bear. And this morning, he drank ALL of his morning nutrition from this. Six ounces of Boost Kid Essentials (1.5cal). Through a straw. NOTHING through his feeding tube for breakfast.

He didn't have as much for lunch, but wow. There's hope to get rid of this tube this year.

10/366 - mickey's clubhouse

2012-01-11T01:17:00.001-06:00

Favorite birthday present:

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9/366

2012-01-09T11:40:00.001-06:00

Play-Doh with Granddad

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8/366 - GiGi's family event

2012-01-08T23:00:00.000-06:00

Micah had a BLAST at the family event. It was a large gym, filled with people and toys, and he walked in, said, "Ball!" and strutted around like he owned the joint.
More on GiGi's Playhouse Twin Cities soon.

7/366 - GiGi's Playhouse

2012-01-07T23:58:00.000-06:00

Have you ever heard of GiGi's Playhouse? Have you visited one? What do you know about it?

What you might not know is that there's a group of us working to bring a GiGi's Playhouse to the Twin Cities!

We are having an informational family night on Sunday from 3-6pm in Edina. I'll post some photos of the event tomorrow.

Day 6.5/366

2012-01-06T15:46:00.001-06:00

My dad is visiting. Nathan sucked him into playing Super Mario.

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Day 6/366

2012-01-06T15:44:00.001-06:00

Can you interpret the note Nathan wrote on the back of a page of schoolwork?

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Day 5 - Two rights don't make it right

2012-01-06T00:26:00.001-06:00

Seriously. Nathan came home from school wearing a right gym shoe and a right Croc. Yesterday he came home in both gym shoes. I told him this morning to wear his gym shoes back to school and come home wearing his Crocs (which are soft-lined loafers, not regular Crocs, for those of you who worry about my child's feet being too cold here in MN). Apparently he couldn't find the left shoe, so he followed instructions to the best of his ability, LOL.
Hoping he can find the other shoe tomorrow...

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Micah's birth story

2012-01-05T14:32:00.072-06:00

2:32pm, Saturday, January 5, 2008 - Our sweet Micah was born.

That morning started like most of my mornings for the previous month: bed rest with contractions anyway. Mark had gone out on some errands (my mom was at our house helping me and Nathan). Contractions weren't decreasing following my procardia dose, so I called the OB to ask about increasing my dosage. Nope. Not over the phone. Come on in to Labor & Delivery (L&D). So I called Mark and he came home. I was drying my hair and he was trying to rush me out of the house (basically like, come on, let's get this over with, because I had a couple of admissions to L&D during this pregnancy so he knew that we would get sucked into the L&D vortex for most of the day).

What I didn't realize until we arrived at the hospital is that they don't stop labor once you get past the 34-week mark. They declared me officially "in labor" and were getting things rolling to send me to Milwaukee via ambulance so that I could deliver him at Children's and be at the same hospital.

[Background: Micah had duodenal atresia, so he would need to go to Milwaukee for surgery.]

The EMT's who would be taking me to Milwaukee came into my room, asked me some questions, and went outside my room to fill out the final paperwork. The on-call OB came in to check me one last time before transport and she declared, "You've gone from 2cm to 5cm in 1/2 hour. You're not going anywhere. We have to deliver Micah here." My heart went into my stomach. I'm crying about it just typing it here. I knew that meant I would be separated from my baby.

Spinal was administered and Micah (5lb, 6oz, 18in... a big boy for a kid with Down syndrome at 34weeks, 5days) was pulled out at 2:32pm. The NICU team was there, but after they cleaned him off and puffed him with some oxygen, they did let me see him before taking him away.

I did not get to hold him that day. Or the next. Or the next. Mark went to Milwaukee and I stayed in the hospital. They did wheel Micah into my room before sending him to Milwaukee, but he was already "packed for transport" so I couldn't take him out of his little box. This is as close as I got to him (note the clock on the wall in the upper left):

That photo was of me seeing his little hand for the first time. Oh, how sad I was... he was diagnosed with amniotic banding syndrome on his left hand. His fingers stop before the first joint. "Just one more thing for kids to use for mocking him," I thought. No one had told me before then. It was a surprise at birth. With all of the ultrasounds I had during this pregnancy, everyone always talked about how cute it was that he was always making a fist ("My little fighter!").

We knew Micah had duodenal atresia. We knew he had a complete AV Canal heart defect. We knew he had Down syndrome. We were "ready" for those things (aka, we had already spent time grieving that stuff). But not being able to hold my baby and finding out he had ANOTHER birth defect... so hard.

Off he went to Milwaukee, but not in the intended helicopter. There was too much fog in Wisconsin that evening, so they put him on an ambulance instead. Knowing that it would be hectic getting Micah settled into the NICU at Children's that night, and that Mark didn't have a "go bag" prepared, we opted for Mark to sleep at home that night, come by the hospital in the morning in hopes of us deciding on a name for our baby boy, and then hit the road for Milwaukee. Micah was on the surgery schedule for Sunday afternoon (though he was eventually bumped due to a critical cardiac case... always better to be the "bumpee" than the "bumper"). This was my first blog post after his birth (I didn't post until Tuesday... other friends had guest blogged about his birth).

I need to go back to the operating room for a few minutes. After Micah was born, the OB's (there were two in the OR for the c-section) were asking Mark and I some questions about our intentions to have more children. We told them we didn't know, but that we weren't planning on having my tubes tied. They were satisfied with that answer, but they came by later to explain why they were asking. The OB told me that I had a very large "uterine window," which is a thinning of the uterus, usually due to adhesions caused by scar tissue from a previous c-section. She could see her whole hand through the wall of my uterus. She took that moment to tell us that it was a good thing that we didn't get on the ambulance, because if I had labored another hour, my uterus probably would have ruptured. Yes. Ruptured. On an ambulance. And both Micah and I probably would have died.

God truly protected us that day. And given everything else Micah has been through since then (a very difficult heart surgery, toxic shock syndrome, etc.), I can say with certainty that He has HUGE plans in store for this little guy. He is a blessing and a gift.

Day 4: Wii Nickelodeon Dance

2012-01-04T16:04:00.002-06:00

Thanks for the game, Uncle Bill and Aunt Beth :-)

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Day 3: Christmas red

2012-01-03T23:42:00.001-06:00

Day 2: I can't hear you

2012-01-02T22:00:00.001-06:00

Micah has a fascination with putting his fingers in his ears these days. I don't know why. I mean really... it's not as if it's noisy around here or something.

(on a separate note, I can't believe this kid is going to be FOUR on Thursday!)

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366 days of photos?

2012-01-01T23:16:00.002-06:00

As you can see, I haven't been the most consistent blogger lately. But, I wonder if a goal to just post a picture each day would work. I'll give it a shot.

We went to the children's museum as a family yesterday. They have an exhibit about children's books. Micah's favorite book is Chicka Chicka Boom Boom and it was well-represented in the room. He could have stayed there all day!

Have a happy new year!

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And the winners are...

2011-11-21T23:33:00.000-06:00

Thank you to everyone who has donated to Ashlyn's adoption account so far. Her grant is up to $875 (with $830 of that coming in since Nov. 1 when the Angel Tree program started).

The winners of the Shutterfly giveaway are:

Nichole M

Catherine H

Kirsten S

Look for your code in your mailbox, ladies. And I'd love to see your Christmas cards!

Quick update on Micah:

He's two weeks post-op for his T/A surgery. He's had some decent days. He's eating basically what he was eating before surgery (not much... about 4oz baby food at each meal). He was drinking a few sips of water last week, but he has no interest in doing so anymore. He doesn't seem to be in pain, but he also won't swallow his saliva and that seems to be getting worse (ew!). He's also very gaggy when he's lying down. He might be sick. Is it possible that he's aspirating saliva at night? I'm still waiting for the sleep to improve...

Will you help rescue Ashlyn? - Giveaway!

2011-11-14T17:01:00.000-06:00

(Please read the whole post, but just as a teaser, there's a giveaway at the bottom!)

It's that time of year. The time when you consider Christmas gifts for others. The time when you decide how much to give to all of the non-profits who send you requests for donations at the end of the year.

So, here's an opportunity to do both! Maybe you have teachers and therapists who work with your kids and you want to honor them with a gift. Maybe you have a relative who "has everything," thereby making gift-buying difficult. Maybe you've done what our family has done and made a conscious choice not to load up cousins with more toys than they could possibly use and instead make a donation to a non-profit in that family's name.

Most of my readers have heard of Reece's Rainbow. They advocate for children with disabilities in orphanages and institutions around the world and help raise money for their adoptions. This year I am Ashlyn's Christmas Warrior.

Isn't she beautiful? She turns two years old this month. At her last evaluation, she was walking (meaning, she was walking before age two). She has Down syndrome and a few health issues (see here for more information). Do you see that bow on top of her head? Rumor has it that orphanage workers put the biggest bows on the girls who are the orphanage favorites. I'm not sure how they got that on her head... she doesn't have much hair. :-) The one paragraph written about her talks about her loving to sing. How sweet is that?! This little girl doesn't have a mommy to sing her a bedtime song. But she still sings. Can you imagine how much more she'll sing when she has a family?

Now for the giveaway! I have three codes for Shutterfly, all good for 25 FREE CARDS. You will get an entry into the drawing for every $5 you donate to Ashlyn's ChipIn here on my blog. If you donate $35, you will get 10 entries AND... a Christmas ornament with Ashlyn's photo on a mirror on one side and the Reece's Rainbow Christmas Tree logo on the other side (for the $35 donation, $30 goes to Ashlyn's account and the other $5 goes to the Reece's Rainbow general fund).

I realize that $35 is more than most people spend on a gift for a therapist or teacher. Last year, I made one big donation and created my own cards for teachers and therapists using the RR logo and Ashlyn's photo.

Here's the chip-in:

You must use the ChipIn to be entered into the giveaway (if you donate directly through the RR website, I won't know about your entry).
(if you are reading this blog post in your email, you'll need to go to my blog to see the ChipIn, I think)

Deadline for entry into the giveaway is one week from today (so that the winners have time to use their 25 free cards as Christmas cards, if they choose).
So, enter by 10:00pm CENTRAL time on Monday, November 21st, if you wish to be entered in the giveaway.

More important than my giveaway is that Ashlyn's family finds her soon. Are you her mommy? or daddy? or sister? or brother? (if the latter two, let me know if you need me to work on convincing your parents that having a child with Down syndrome is one of the BEST things that could ever happen to your family) :-)

Our Christmas card

2011-11-11T06:00:00.000-06:00

Here it is! The Christmas card is finished! (yes, this must be some sort of miracle)

Faith Hope Family Religious Christmas Card

Custom Christmas cards are always available at Shutterfly.com.

View the entire collection of cards.

Micah's T/A surgery

2011-11-10T15:50:00.000-06:00

Micah had his tonsils and adenoids removed on Tuesday. Here's a video of him before surgery:

(if you're reading this blog post from your email, you'll need to click on the first line of this email to actually go to the blog)

He thought "purple pants" sounded funny, so he kept saying it over and over while we were in pre-op. Nurses were stopping by his room just to hear his laughter. This kid has quite the following, even when people don't know him!

His surgery went well. His ENT doc came out to talk with us afterwards: "His tonsils were quite inflamed. He's probably been dealing with chronic sore throats for a while now." How encouraging. His tonsils have been 80% obstructing for almost 2 years now and it's taken way too long for ENT to agree that they needed to come out.

I stayed with Micah in the hospital for monitoring overnight. That was not fun. We were in "short stay," so it wasn't on a floor and the rooms do not have comfortable sleeping arrangements. We checked out at about 10:00am. He had a decent day yesterday and slept like a champ last night (with much credit going to the codeine, I think). He's doing great, though. He's eating basically what he was eating before (stage 1 and 2 baby foods... not quite as much, but still doing well), except we're avoiding yogurt and smoothies for a few days. We're praying that having those ENORMOUS tonsils out will give him a better ability to swallow and give him more confidence to try new foods and drink consistently.

Tonsils and adenoids this morning

2011-11-08T06:45:00.002-06:00

Little man LOVES the iPad.

Please pardon my lack of updates lately. Micah has not slept well in weeks. Okay, he's NEVER slept well, but this has been an exceptionally bad month. First, a virus that caused an ear infection. The day after the end of a 10-day course of augmentin, he got goopy eyes again, so he went on another 10 days of augmentin. On day 8 of that, we were at the pediatrician for a Nathan issue. She recommended we take Micah to ENT because she thought that sinus infection had probably migrated to his adenoids, and that infection wouldn't be fixed with an antibiotic.

So, five days later, we had an ENT appt. He took one look at Micah's tonsils and told us it was time to take them out. He didn't even scope his adenoids. It has been almost two years that we have been trying to convince ENT that he needed his tonsils removed (they've been 80% obstructing for 2 years, but now they meet in the middle).

We are hoping for two major improvements after he recovers from this surgery: 1) Better sleep and 2) Better ability to eat.

I videotaped Micah laughing tonight. I'm convinced that his adorable little hoarse giggle will change without the monster tonsils being in there. When I have a bit of time, maybe I'll be able to edit that video and put it on YouTube. I'll keep you posted. Please be praying for our little man.

Shutterfly Christmas cards

2011-11-02T01:28:00.001-05:00

Hi, folks. I know I owe you an update. But as behind as I am with everything else in my life, I'd like to get my Christmas cards ordered. And I have a deal from Shutterfly if I blog about their cards (which I have ordered for the past few years and I have really enjoyed my experiences with them).

So, without further ado... my analysis of Shutterfly's 2011 Christmas cards.

There are WAYYY too many choices this year. I've decided to go with a card that has one large photo and three small photos on the front. Even with that as the criteria, I have only narrowed it down to 14 choices of flat (not folded) 5x7's (though I'm still not convinced that I'm going flat... folded is still an option). A less expensive option would be to go with the photo cards, rather than the stationery cards (though there's no printing on the back).

I haven't actually created a card yet. One of the things I haven't like about Shutterfly cards in the past is that the space for text on the back side is too small and inflexible. But... the back side this year is VERY customizable. You can choose whether you want to include lots of extra photos or add a lot of text. I really like the choices. Keep in mind, you don't have to do ANYTHING on the back, but it doesn't cost extra. So if you've pondered a Christmas letter this year, but you don't feel like writing an entire 8.5x11 page of updates, this is a great option to include some highlights.

(I was given some free cards from Shutterfly for writing about their cards, but the opinions expressed here are my own, without influence)

I'd like to add that there's no way I can top last year's card, so I'm not even going to try.

Stay tuned for a giveaway of three Shutterfly codes, each worth 25 free Shutterfly cards. :-)

31 for 21 Day?: I love you

2011-10-26T00:30:00.000-05:00

Okay, so it was more like, "I uhv oo." But it was unsolicited. And spoken by Micah. (and he pointed to himself, then to me)

Love this kid.

31 for 21 Day 17: petting zoo photos

2011-10-18T17:16:00.001-05:00

Seriously, the best part of our day at the corn maze was the petting zoo. It was a large pen where you just entered and all the animals were in the large pen (not behind gates). I thought Micah would be scared, but he was immediately thrilled (he's rather scared of dogs, so this somewhat surprised me). He laughed and laughed!

When Micah first saw this cow, he said, "Oh... cow! Hi, Cow. Mooooo." Hilarious!

Matthew had a bit too much fun chasing this chicken.

31 for 21 Day 16: a photo fest

2011-10-18T16:49:00.000-05:00

(sorry for the photo delay. Blogger has not been my friend for the past couple of days. I'm going to try to make it up to you with a bunch of pictures!)

We went to our second corn maze last weekend. It wasn't as warm as two weeks earlier when we went to the other one. But it was sunny! And the kids had a BLAST!

Nathan's favorite activity is jumping around the top of the straw bale maze (a kid-sized version of a maze... super fun!).

In the middle of the maze is a tower of straw bales. Micah was content to hang out there for quite a while. Think "King of the Hill."

I love this photo of Micah and Mark. :-)

More photos to follow in the next post. The petting zoo was so.much.fun!!!

31 for 21 Day 15: He went in the corn pit

2011-10-15T23:00:00.000-05:00

Micah has some significant sensory issues. I know I've mentioned that before. He would prefer to NOT do any artwork at school (as in, "Don't even THINK about trying to put that crayon/gluestick/paintbrush/scissors in my hand").

We went to a fabulous corn maze today. They had the best.pettingzoo.ever. We weren't feeding animals behind a fence... we were inside the fence WITH them (cows, chickens, goats, sheep, ducks) and we were able to feed them. Micah LOVED it. We walked in and he said, "Ohhhhh... cow... Hi, cow. Mooooo." Hilarious!

And he loved just standing on the top of the straw bale maze. It was his king-of-the-mountain experience, I guess.

But the best part? After watching everyone else play in the corn pit for a while, Micah actually decided to venture in. On his own. No prompting required. Unbelievable!

Unfortunately, our camera is out of battery and I can't download photos until I get the camera charged (no, I can't just take the memory card and put it into my laptop, so don't bother recommending that). Anyway... you'll have to wait until tomorrow for more pictures (better than this one from my phone). And trust me... there are LOTS of pictures.

31 for 21 Day 14: ENT issues

2011-10-14T17:55:00.000-05:00

Lots of kids with Down syndrome have a close relationship with a pediatric ENT doc (aka, otolaryngologist... can anyone actually pronounce that?). Micah's ENT explained it this way: One of the physical traits of individuals with Down syndrome is a sort of flat face. That results in less space on the inside. So their nasal passages are more narrow, along with their ear canals (and less room for their tongue to hang out in their mouth, I think, but don't quote me on that one).

Micah has been fortunate to not need ear tubes. In general, he hasn't had any more ear infections that a typical kid. But his sinuses... that's another issue. Last July (2010) Micah had a sleep study. He would not allow ANYTHING on his head, so we really didn't get much out of the study except that they determined that he did not have obstructive sleep apnea. The did record 30 awakenings. But it wasn't enough for anyone to recommend a tonsillectomy. Ugh.

Micah is a crummy sleeper. Always has been. But when he's sick... it's awful. Micah has been on antibiotics for a sinus infection for 3 weeks (first course of 10 days resulted in a return of the goopy eyes, etc., just 24 hours later, so we're on round 2 now). He can barely breathe overnight. We give him a decongestant and spray lots of saline, but it doesn't do much good. I discussed this with Micah's pediatrician today. She said his tonsils look ENORMOUS (no surprise), and given his symptoms, she thinks there's a lingering issue with his adenoids (adenoiditis) due to the sinus infection.

So... MAYBE this will be our ticket to a tonsillectomy and adenoidectomy. We got in fairly quickly (next Wed.) to see his ENT. Micah's ped said that his ENT doc is one of the few that does a partial tonsillectomy, which results in a quicker recovery and is less painful.

When Micah is sick (like he is right now), his eating gets even worse than normal. He gets gaggy (because there isn't room in the back of his mouth to handle the food?). I've heard that *some* kids' eating gets worse after a tonsillectomy because they can't manage food is a LARGER area back there. Personally, it's a risk I'm willing to take because it's not as if is eating is stellar NOW.
(do I need to post about his eating, or lack thereof, or are you, my readers, sick of hearing about my frustrations with my tube-fed kid?)

31 for 21 Day 13: Inclusion clarification

2011-10-13T14:24:00.000-05:00

When I posted last week about inclusion and mainstreaming, etc., I did not mean to imply that I am not a proponent of full inclusion. I love the full inclusion model. What I *meant* to communicate is that I do not believe that it is the best thing for every child.

Micah is in full inclusion preschool. I expect full inclusion to work for him for many years. If it works for him for the rest of his education, then that would be GREAT! But I'm also okay with him being pulled out if that is the BEST decision for Micah's education.

I learned some valuable tips from PACER, an advocacy center here in MN. One of the best workshops I attended was about IEP's (Individualized Education Program... this is what is created every year for a child with a disability to set goals and accommodations for that child's education... the school must follow the IEP). The parents leading this particular seminar talked about the importance of the correct order for the creation of the IEP.

1. Evaluations
2. Needs
3. Services
4. Placement

Too many people (parents and educators alike) focus on the placement first (i.e. full inclusion) rather than the other pieces. I think IEP's warrant their own blog post, so look for that in the future.

[Today is the 4-year anniversary of my first blog post.] :-)

31 for 21 Day 12: The prenatal diagnosis, 4 years ago today

2011-10-12T22:15:00.025-05:00

Ironic that our "anniversary" of Micah's diagnosis is in the month of October... Down syndrome awareness month. I'll never forget that call:

"I have the results of your amniocentesis and I have bad news for you. Your baby has Down syndrome. Do you have any questions?"

Couldn't think of any. And in retrospect, that was probably a good thing. Because I'm guessing the guy wouldn't have given me the most accurate information. He wouldn't have told me about early intervention. or reading ability. or prom king. or international speaker. or husband. or homeowner.

Those early days of the diagnosis were dark. really dark. We went though grief. "How do you launch a broken arrow?" was a question actually uttered in our house. Oh, how I wish I could go back to that couple and tell them that their son's smile would melt their hearts. that his hugs would melt completely into their chests. that he would teach them more than they ever wanted to know about themselves. that he would teach them more about God than any other human possibly could.

31 for 21 Day 11: Is he "high functioning?"

2011-10-11T23:01:00.001-05:00

A question often asked of parents of a child with Down syndrome is, "Is he high-functioning?" While we parents understand the question, we're often tempted to ask you, "Is YOUR six-month-old high-functioning?" I had people ask me how "severe" his Down syndrome was, even before he was born.

So, let's talk cognition. Individuals with Down syndrome will usually fall in the mild to moderate level of cognitive delay. Just like with typically-developing children, there is no way to know in utero what that child's IQ will be. [Individuals with Down syndrome are usually very advanced in their social/emotional IQ, however. So in some ways, they are often smarter than us.] :-)

Historically, our society has viewed individuals with Down syndrome as unintelligent. I believe that one of the reasons for the misperception is speech. They have historically had a tendency to have poor speech. I believe that in our biased minds, we tend to view individuals with poor speech as not being as smart as someone else.

Research shows that the primary challenge facing individuals with Down syndrome is working memory. DownsEd has done some research in this area. Here's a link to a great article they wrote about it. I find it interesting that they talk about the phonological loop being a primary culprit. It makes sense. Our kids tend to be visual learners, rather than auditory learners. So, additional research is showing that by teaching children sight words at an early age (as early as 18 months!), you can help their speech development and working memory. Rock on! Are you ready to read, Micah?! More on that in a future post.

Back to cognitive development. Beyond the brain training activities that can help develop their working memory, there are actually clinical trials going on right now that are researching effects of a medication on cognitive development. I hope this research progresses quickly! Stay with me here. This is not because I want Micah to be smarter so that I can say he's smarter. I want Micah to have the best possible opportunities to be happy. My guess is that he'll not be happiest living with Mom and Dad the rest of his life. So I want to do whatever I can do to enable him to live independently and be happy. Do you have to be smart to be happy? No. But if there's going to be an opportunity for him to improve his chances for getting a good job, and apartment, etc., then I'd like that opportunity to be presented to him sooner rather than later. I'll try to blog about the research sometime soon.

So back to the original question... I don't know. Personally, iiiiiii think he's pretty smart. :-) He's been fairly slow in his motor skill development. But I've heard that doesn't have a correlation to intellect. We'll do what we can to foster his cognitive development. But ultimately, God is in control of his life. We have him only for a short time. And what a blessing he is!

31 for 21 Day 10: Preschool readiness

2011-10-10T16:00:00.001-05:00

Micah knew the alphabet, numbers, colors, and letters when he entered preschool this fall. And he says them out loud (he sometimes signs the colors when he says them). A few of my Facebook friends asked how we got him to that point. So, here are some of the things we've done with Micah to prepare him for preschool:

1. Alphabet: Foam letters and numbers for the bathtub. Micah loved picking up a letter and asking what it was. Eventually, he knew them himself. They're great because it engages multiple senses (adds tactile).

2. Alphabet: "Chicka Chicka Boom Boom" book

3. Alphabet: Magnetic letters and numbers. We don't have a fridge that works with magnets, so I bought a small magnetic chalkboard with wooden magnet letters (Melissa & Doug).

4. Numbers: Count everything :-)

5. Numbers: see #1 and #3

6: Shapes: wooden puzzles

7. Colors: "Favorite Things" Signing Time video (the song, "Do You Know the Colors of the Rainbow," is addicting)

8. Colors: Point out colors of everything your child sees.

9. All of the above: Flashcards, preferably those with texture and pictures.

10. We're currently working on categorizing by colors (next is categorizing by vegetables, fruits, vehicles, etc.) with some flashcards I bought at Target for $1.

11. The best $50 I spent was on a Teach My Toddler set. It has multiple activities for all four of the areas of focus.

When "testing" your child, start with just two choices. It has taken Micah a LONG time to look at a page with a lot of information and point to something red, for example. It's often too much information and he just can't absorb it all. When he had learned his colors, etc., I could point to something on a page and ask, "What color is this?" and he could say "Red." But if I asked him to point to something red, he couldn't do it. He really enjoys one of his iPad apps where he has to choose between just two colors, but he likes it because it's easy now, LOL.

31 for 21 Day 9: Amazing Gracie

2011-10-09T23:08:00.000-05:00

I've been searching my blog for a post about Gracie and I can't find one. How sad! I mention her often on Facebook, but I haven't been a consistent blogger this year and this proves it.

Gracie wasn't expected to make it to birth. Then she wasn't expected to make it through heart surgery. Then her parents were told that her heart repairs were as much as they could do (and it wasn't going to be enough). And then her mom found a stellar surgeon in Boston who said he could fix her heart and he did. I'm leaving out a lot of details here, but suffice it to say that Amazing Gracie is the appropriate nickname for this kid.

Isn't she just yummy?!!! (Micah says, "hubba hubba!")

This kid had 80+ people walking on her team at her first Step Up for Down Syndrome (SUDS) walk... before she was BORN last year. And I got to hold her there this year. Amazing. She's one blessed little girl. Her mommy, Carrie, is a special education teacher and advocates for this girl like crazy. And her daddy is crazy head-over-heels for both of his little girls (Gracie has a big sister, Lylli). Rich actually blogged about Micah and me the other day. I love reading Rich's blog. Most of the blogs about kids with Down syndrome are authored by the moms. It's refreshing to hear a dad's perspective.

I'm honored to be mentioned on Rich's blog. It means so much to me that Micah can give others hope about the future for their kids. I worry that because he's been so plagued with health issues and that he's been so delayed in his physical development, that people will view life with a kid with Down syndrome as too hard. I hope that people see the benefits of life with Micah far outweigh the challenges.

On a separate note, my long-time readers might remember me mentioning a little girl named Carly who died while Micah was struggling with toxic shock syndrome in April 2010. Understandably, this has been an incredibly awful 18 months of grief for Joany. Last week, Joany's daughter headed off to the Navy. Then on Saturday, tragedy struck their family again. This time, they lost their house to a fire, along with all of their memories of Carly. And if you can't imagine it getting worse, it can. Their son, Brad, died in the fire. Please pray for the George family. I cannot imagine...

31 for 21 Day 8: Signing Time

2011-10-08T15:19:00.001-05:00

Micah used to sign... A LOT! I had the Signing Time theme song running through my brain all.the.time. I truly believe that signing has helped Micah speak. We don't teach him new signs very often anymore because he is vocalizing more and he has a lot of other educational stuff going on. Signing is beneficial for ANY child, not just those with Down syndrome. It teaches the value of language (note that there is a difference between language and speech) at an early age and encourages effective communication.

I'd like to add that because Micah's feeding tube would result in lower strength in his facial muscles, combined with the low muscle tone present in kids with Down syndrome, well, I was TERRIFIED that Micah wouldn't speak. Learning sign language definitely helped (along with a LOT of hard work by his therapists).
Anyway... I'd like to pass along a great sale coming up on Monday.

Our favorites have been the Baby Signing Time series for the little people. Then we "moved up" to the regular Signing Time series. Micah's favorite videos then became My Favorite Things (colors and foods), Leah's Farm, and Zoo Train. From there, he went on to love My Neighborhood and Welcome to School. He enjoyed the others in between... I just thought I'd share what his favorites have been. For those of you with littles... consider asking for some videos for Christmas gifts. The 25% off sale on Sunday and Monday is a great deal. Have fun shopping!

31 for 21 Day 7: A Heart Mother

2011-10-07T22:46:00.000-05:00

A poem to minister to the hearts of my fellow heart moms:

A HEART MOTHER

One day my world came crashing down, I'll never be the same.

They told me that my child was sick. I thought, "Am I to blame?"

I don't think I can handle this. I am really not that strong.

It seemed my heart was breaking. I have loved him for so long.

I will not give up on this child. I will listen to your advice.

I will give my child any chance. No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube. My child must survive!

Will he need a lot of therapy? Will he gain the needed weight?

Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder...

How many parents would love that sound. Tomorrow I will be kinder.

As another Angel earns her wings, I run to my child's bed.

I watch him sleep for quite a while. I bend down and kiss his head.

I cry for the parents whose hearts have been broken. I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life and guide us through each day.

My mind says savor each moment he is here, but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "Will he be alright?", to watching him reach out his hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line, I look to them and smile.

You see, my child is loved so much. I would face ANY trial.

That scar I trace with my finger: it's the door to his beautiful heart.

God must have known how much I'd love him (just as He loved him from the start).

A heart mom is always a heart mom, now wise beyond her years.

For those who have angels in heaven, our hearts share in your tears.

Every day I will try and remember, I was chosen for him (and no other).

I will always embrace that beautiful day... When I became a "Heart Mother."

~ Author unknown

31 for 21 Day 6: Micah phrases

2011-10-07T00:30:00.001-05:00

Micah doesn't really speak in sentences yet. But he does have some "specials" that he uses often.

1. "I want _____ please." (these days,
2. "I nuh no." (I don't know)
3. "Gag, u rit." (Tag, you're it)
and my favorite
4. "I funny."

Trust me... the "I funny" is used at appropriate times. For example, when playing catch and he intentionally throws it away so you have to run down the driveway to get it. Or when he says a funny word at dinner (i.e. "dooooood").

31 for 21 Day 5: Private school inclusion?

2011-10-05T22:36:00.001-05:00

When I was in San Antonio at the National Down Syndrome Congress annual convention this summer, the last workshop I attended was hosted by a group from Nashville (my hometown for nine years!). The presenters were a parent, a teacher, and a professor from Vanderbilt. They have created a program, called Heart to Heart, for kids with Down syndrome at a (pricey) private school, Franklin Road Academy, in Nashville.
The dad who spoke has a son with Down syndrome. He had two other children at this school and his middle son went to public school. When having a discussion with some other school board members, they kept referring to the "FRA family." After a while, this dad finally said something to the effect of, "This is not my family. Not when my son is not welcome here." This threw this school for a loop. Ultimately, they decided to put their money where their mouth was. They searched the country for a K-12 school that had a program for kids with Down syndrome (or any special need, I think) and they couldn't find one.

So they created one.

With some interesting characteristics.
1. Funding would come from outside the general budget (basically, so no parent could say they didn't want to fund a special ed program with their tuition payment).
2. The program would have no impact on the rigorous academics currently in place at the school.
3. The students in the program would not receive diplomas; rather, they would receive certificates of completion.
4. The program would be limited to a maximum of two students per grade, and only as funding permits.
5. The students in the program would pay tuition just like everyone else (roughly $15k/yr, if you're curious).
6. The program is only for students with Down syndrome (which was met with a bit of contention from a few parents who have a child with a different special need, such as autism, but the reason is that the teachers are able to research Down syndrome learning styles and fairly easily customize a learning program for each child).

This is not a full inclusion program. It's a mainstreaming program. What this means is that the students are pulled out for specific classes, such as math and reading. There is one teacher for two students. That teacher (I think) writes their exams for all their classes (if they need modifications) and teaches them during pull-outs.
(side note: I'm not a full-inclusion proponent, unless it is the best place for a specific child. It makes me crazy to hear parents talk full-inclusion for everyone. If the best place for Micah to learn math in sixth grade is in a resource room where he can catch up on areas in which he might have fallen behind, then that's where I want him to be.)

The best part of Heart to Heart is that the kids in the program are getting a great education and are truly a part of the school. When you watch the video below (it's about 5 minutes long), take note of the comments made by the parents of the typically-developing kids, as well as the teachers. Take note of the well-spoken 5th grade class president and how they chose the Buddy Walk for their service project. (if you are reading this blog posting in an email, you'll need to click here to see the video)

Side note: bullying at the school has decreased at the school since the Heart to Heart program began.

There are many parents of typically-developing kids who don't think our kids with Down syndrome (or other delays) belong in a regular school. This program, I believe, shows that the opposite is true.

31 for 21 Day 4: Siblings

2011-10-04T16:37:00.000-05:00

I received a question from Lisa today. "It would be interesting to read a blog post for this month on the interaction between siblings in your house---how Down syndrome does or does not impact the boys' relationships, how their relationships with Micah or with each other ...continue to grow and change. Do they resent Down syndrome? Do they ask lots of questions (I'm primarily thinking of Nathan here, of course). How do you approach treating them "equally" when Micah needs things that the others do not?"

It's an interesting series of questions and I've often wondered about this too. So, I'm going to just process the answers while I'm writing.

As far as Down syndrome impacting their relationships... About a year ago, Nathan told me for the first time that he loves Matthew more than Micah. That really stung me hard. I had to remind myself of the following: Matthew was running (Micah wasn't even walking). Matthew plays with Nathan (Micah wasn't interested in playing WITH Nathan). Matthew wants to BE Nathan (maybe providentially, Micah couldn't care less and doesn't imitate anyone, much to my chagrin as it relates to eating, drawing, etc.).

So I guess that means that Down syndrome has somewhat "delayed" a peer relationship between Nathan and Micah. Nathan will now occasionally slow down enough to play with Micah. But Micah has no interest in the typical boy tackling thing. I'm guessing that a good part of that is related to his poor vestibular processing (google it if you're interested... can't really describe it fully right now, but it affects Micah's balance and "gravitational security"). He also isn't a big fan of touching things... anything... so that includes his brothers most of the time. Here's an example:

I didn't post these pics after I took them because it looked like Micah was not included with his brothers. Sadly, that is usually by his own doing. Don't get me wrong... they LOVE Micah. And they are playing together more often these days. It usually involves a ball. And Micah is starting to find it funny to intentionally throw the ball so someone else can't catch it (then he says, "I funny" and laughs hysterically... class clown in our future).

As far as I can tell, Micah's brothers don't "resent Down syndrome." I tried very hard to involve Nathan when Micah was little and had therapists coming over to the house to work with him. And Nathan was pretty little when Micah was born and he was only 2 1/2 when Micah had his open-heart surgery. That said, life was much more complicated back then (esp since Micah was on continuous feeds on his feeding pump). We tried to NEVER say, "No, Nathan, we can't do that because Micah ____." (fill in the blank). I've always taken Nathan out every week for a lunch date, just the two of us. We have been blessed with help so that I've been able to do that. I now do the same thing with Matthew (much easier now that Micah is in preschool and Nathan is in Kindergarten).

Nathan hardly ever asks anything about Down syndrome. I think that's primarily because Micah was born when he was still young and doesn't know anything different. I'm sure the questions will start coming more frequently as he meets new friends in school who do not have a sibling with different abilities. We went to a birthday party for a friend last weekend and on the way there, Nathan asked me, "Does K have Down syndrome?" I told him she does. He said, "Oh." That was the extent of the discussion, LOL. In the spirit of the research, I just asked him what he thinks it means that Micah has Down syndrome. He said, "It means he grows slower." That's all I got out of him. :-)

I'm sure there's wisdom in why the ARC runs "Sibshops" for kids who have siblings with "special needs" and the Sibshops don't start until age 6. I'm guessing that's when they can really start to verbalize any potential issues.

Brian Skotko's group (Children's Hospital in Boston) just published the results of a survey. Here are some highlights:
The study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:

94 percent expressed feelings of pride about their sibling
7 percent felt embarrassed by their sibling
4 percent would “trade their sibling in” for another
88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

97 percent said they loved their sibling
90 percent felt their friends are comfortable around their sibling

Good stuff. If you want to read the whole article, you can find it here.
Thanks for asking, Lisa!

31 for 21 Day 3: Learning styles in children with Down syndrome

2011-10-03T16:58:00.000-05:00

Okay, so no one asked me about this (because I have no other questions from my readers, hint hint), but I'm going to address what is, in my mind, something critical that all parents of kids with Down syndrome understand.

Our kids tend to learn differently than "typically-developing" kids.

Am I stereotyping? Yep. Is that okay? Sometimes.

I read a quote on FB today on a page dedicated to iPad apps for kids with special needs. I think it's great! It was written by someone named Jean. She used an ancient Chinese proverb as the base for her analysis:

Tell Me and I Will Forget
Children with speech language disorders do not learn well in a lecture style formats that take place in schools. They easily become overwhelmed by too much auditory input and shut down. ** personal note: This is a BIG deal with Micah.

Show Me and I May Remember
Using visuals like schedules and social stories to assist in the explanation of language helps in the learning process.

Involve Me and I Will Understand
Hands on projects and activities assist in embedding the learning and making it real.

The Chinese proverb is generally true for everyone. But Jean put legs to it for our kids who tend to be visual (rather than auditory) learners. Individuals with Down syndrome tend to be visual learners. Apparently all babies start life as visual learners, and we progress to auditory.

There's a small bit of controversy within the Ds community as to whether we should tap primarily into the visual learning style or spend time developing the auditory style. I'd love to hear some feedback and discussion on my opinions here.

I'll give an example of Micah's visual learning strength. I think most kids learn the alphabet via the classic alphabet song. My "bookend kids" (oldest and youngest) are no exception. Micah, however, learned the alphabet in many ways. Our primary teaching tool was foam letters you can use in the tub. He would pick one up and we would tell him what it was. The book Chicka Chicka Boom Boom is another favorite. This kid THRIVES on repetition. He also loved seeing us sign the alphabet (this is partly a function of the struggle to get this child to eat... we got sick of counting every bite so we started doing the alphabet).

Visual "schedules" are also very important. This is true in most typically-developing kids too. I mean, how would YOU like it if you went through your entire day not knowing where someone was going to drag you next? Guilty as charged. I need to do a better job at this at home. But Micah's teachers do a great job at school. There are pictures inside his locker that show what he has to do before going to the play area (hang up his backpack, take off his coat, hang up his coat, close his locker, wash his hands, and dry his hands). I love this post another mom wrote a few days ago.

I'll do a separate post on reading. But in a nutshell, kids with Down syndrome tend to not understand phonetic reading until a few years into school. Learning sight words prior to Kindergarten really give them a boost when they enter school. We're starting a bit of that with Micah.

Working memory is the biggest challenge for our kids with designer genes. I think I'll address that when I discuss reading programs. Some of you out there work with medications for your kids to help with the memory issues. Anyone care to comment? I know gingko is a "drug" of choice for some. We haven't tried it (yet) with Micah. I'm planning to ask his cardiologist about it on Friday at his checkup. I've heard that it has some blood-thinning properties and I want to make sure that it won't have an effect on his valve leakages.

Bring on some more questions, friends!!!

31 for 21 Day 2: Educating "typical" kids

2011-10-02T17:07:00.000-05:00

I got a great question from a friend. Rachel asked, "How do you want me to help my children understand how/why Micah is different (and the same) from them. I feel like we've done a pretty good job explaining, but I want my kids to have a compassionate understanding while at the same time understanding that people with different abilities are able to do MANY of the same things they do."

Great question! I'm not necessarily the right person to answer this question, because I've barely even talked to our Nathan about this. But... my personal experience is that it's ALWAYS best to focus on the similarities. That tends to make the differences less important. I think that helps all of our kids relate to kids that are different in any way from them (not just in their intellectual or physical development). Micah has friends, he smiles, he laughs, he climbs playsets, he knows his ABC's, colors, etc.... those are all things that most kids can relate to their own abilities.

I find it easiest to put it as close a context as possible. So, with your 5yr old, for example, when they ask why Micah can't run, you can point out how your child's younger sibling couldn't walk as soon as the 5yr old wanted him to walk. But look, now he can walk. That conversation also enables you to point out that Micah too had to crawl before he could walk too. and that he will learn to run, it just might take him longer than other kids.

If your child is old enough to understand the concept of strong versus weak, you could also tell your child that, most of the time, kids with Down syndrome have lower muscle tone than other kids (at a young age, I wouldn't try explaining that low tone does not mean "weak"), and that means they have to work harder than the rest of us to learn to do activities like crawling, walking, running, jumping, drawing, eating, etc.
I know other friends who have gone into early primary classrooms and discussed Down syndrome with the kids in the class. A book that lots of people use is We'll Paint the Octopus Red (I just got it on my iPad last night... it was on sale yesterday and might still be on sale). I know I'll do that with Micah's class someday. I'm not sure about Nathan's class. Does that do too much to point out that Nathan's brother is "different"? Any other parents out there have any thoughts?

Rachel, I so appreciate your heart to teach your children about respecting and honoring others.

31 for 21... am I really doing this again?

2011-10-01T02:08:00.001-05:00

Yes, October is here again. I've been a VERY inconsistent blogger this year, so I plan to make up for that with the annual 31 for 21 blog challenge.

New here? Wondering what that is? Well, October is Down Syndrome Awareness Month (yes I'm aware that it's also Breast Cancer Awareness Month, but thankfully that hasn't impacted my life as much as the other). There are 31 days in October (hence the 31). An individual with Down syndrome has 3 copies of the 21st chromosome (hence the 21). The challenge is to blog every day for the month of October. The primary purpose is to educate, inform, and advocate.

So... what do you want to know about Down syndrome? About Micah? Maybe one of the following issues makes you think of some questions: medical issues, cognitive development, research, inclusion, government funding, prenatal testing, long-term concerns, siblings, etc. Pick something and ask away.

Micah walked in the SUDS walk!

2011-09-25T23:00:00.000-05:00

Today we walked in our first Step Up for Down Syndrome walk in St. Paul. It was a glorious day! The weather couldn't have been better. And we had a great group walking in Micah's Mob, including family (Oma), babysitters and PCA's, Micah's pediatrician (and her son), and wonderful friends.

I don't know how many people were there. Maybe 7,000? And Micah... I think somehow he figured out that this was his day to shine.
So he tolerated music and people talking on a PA system. He laughed... and made others laugh.
He played ball.

He walked (a bit).

And then he didn't walk, but the rest of us did.

And then... he fell asleep before the walk around the lake was completed. And he slept there in that stroller for about and hour and a half.

His brothers wanted to share the stroller... sort of.

But mostly, they had fun playing with the Stomp Rocket that Nathan got for his birthday (there will be a birthday post coming soon).

One of the wonderful things about a day like this is that you get to meet lots of fun people. Some of you know Leah. I had the privilege of meeting her and Axel. What a sweet boy! (and he enjoyed the Stomp Rocket with the other boys). I finally met Will and his mom, Tracy, who has prayed many prayers for our little warrior boy. We were able to see many of our friends in our local parent group.
We shared some space (tent, food, etc) with Team Violet (her mom is Karen). Violet is such a cutie patootie!

And I got a snuggle with Amazing Gracie. Remember when I shared about her heart journey? Last year, her family and friends walked in the walk while Gracie was still in utero. What a testimony to God's grace that she was there with a huge crew this year.

We are so blessed that Micah has so many people who love him.

(for those of you taking notes.... no, he didn't wear his glasses much today... we put them away the first time they hit the grass because I really don't have time to deal with a full replacement right now)

5x7 Folded Card

2011-09-25T22:00:00.000-05:00

Bold Dots Thank You Card

Shop thank you notes and photo cards at Shutterfly.

View the entire collection of cards.

Micah's first day of preschool

2011-09-13T03:14:00.000-05:00

Okay, it was "sort of" his first day of preschool. Micah went to a transition class last semester. It was great! There were 4 boys in the class. It was a perfect environment for Micah to learn in a group setting and get used to a routine of school.

Our school district has a preschool and that's where Micah is going. There are 20(?) children in the class and I think 5-6(?) are on IEP's. There is a primary teacher for the class and there's a SPED teacher in the class too. Micah's therapists will do his therapy sessions in the room (unless he doesn't focus well with all the noise). Micah knows his SPED teacher and that is a HUGE bonus. At his listening conference last week, Micah said, "Hi, Timmmmm" and made everyone smile.

Speaking of smiling... Micah was quite the little rockstar this morning. Lots of teachers were fawning over him as he entered (and exited) the building (seriously cute... and little... he's only 34" and weighs less than 27 pounds). Micah's para was carrying him out (instead of making him walk) when I arrived at the end of the morning. She said that the hallway was super crowded. I'm not going to question anything that happens the first week of school, but I'll be watching to make sure that Captain Adorable isn't charming his way out of working.

I know where I'm going.

Ooo, a locker

Letter puzzles... my favorite!

Posing at the locker

Seriously... he dug right in (his OT would be proud) and pulled out a letter and said, "oh." Then he pulled out a number and said, "twoooo." (yes, Mommy is proud!)

Sensing something not quite right, he needed an extended hug.

Cheese!

When Mark and I told him "bye," he headed straight for the door. Tim was there to keep him in the room, but the pursed lips is all we got when we left. I'll take it. It's better than tears.

Apparently, after Micah finished any task this morning, he said, "All done," and headed for the door. He did two art projects (which is great for him because he doesn't usually like to touch stuff). He enjoyed the playground and read LOTS of books with Tim. I'm so proud of my little man. He's ready for preschool. He knows the alphabet (and can recognize both upper- and lower-case letters). He can count to twelve (and pretend to count to 20, but all the "teen" numbers sound the same: ebghebe-teen). He knows his shapes and his colors. The key is for his teachers to give him enough time to answer questions. There's a definite delay when you ask him to identify something. Give him enough time and he'll prove to you that he knows it. He's going to rock preschool!

Nathan's first day of Kindergarten

2011-09-13T02:45:00.001-05:00

Yes, we had a late start to the school year. Nathan's school was undergoing construction this summer. There was a state government shutdown here in MN and the school missed some building permits during the shutdown. So... school started 2 weeks late. He's going to a charter school that is taught in the classical tradition. I think he'll really enjoy it!

Nathan has been very excited about Kindergarten. After he left his locker to head toward his table he said, "Hey, everybody... I'm here!" When I asked him about his day, he told me that he sat with a bunch of "gurrrrlsss" at lunch and not his friends ("You sit where you sit and you don't pitch a fit"... must have been a phrase from preschool, LOL). He was bummed that he didn't have a ball to play with during recess and the kids playing hopscotch "really didn't know how to play." He mentioned that a boy at his table was calling him mean names today ("I asked him to stop and he didn't. I was going to tell the teacher but everyone was talking."). I'm erring on the side of low-maintenance mom and I'll let him work it out.

He looked so sharp in his uniform. And so big.

I missed him a ton today. It was crazy quiet around here (yes, I did still have two small boys at home, but the noise level associated with #3 is an exponential increase). But he's going to LOVE school. He loves to learn. And I look forward to seeing how they deal with his math acumen. He's doing second-grade math (the kid LOVES math... long subtraction and he's begun to teach himself simple multiplication, mostly thanks to the iPad, LOL). There's a possibility of him moving up a grade just for math (how cool is that?), but his challenge is that he won't be able to read the worksheets because he doesn't read yet! (here's hoping that his teacher can boost his confidence in that arena)

We interrupt this blog...

2011-08-19T16:00:00.001-05:00

... to blog on someone else's blog. Yes, I guest blogged at Lisa's blog today.

For my Ds peeps... you're right... there's so much more to say. I should have written about how so many families who have been blessed with a child with a little something extra have decided to add ANOTHER child with designer genes to their family. I should have written about the horrible conditions in which children in some other countries live when they are abandoned due to the fact that they have Down syndrome. I could have written about the many successful young adults I've met who jump into life with confidence and succeed. I could have shared more about therapy opportunities, medical advances, etc. And I could have written about the marvelous family (YOU!) I've met, either in real life or here in the blogosphere or on Facebook, and the support we have found through you.

I wrote quickly. And probably missed some opportunities. But I'm grateful to have had the opportunity to write something that will be read primarily by moms (and dads) who are not blessed with the gift of a child with Down syndrome.

NDSC: Behavior and Communication

2011-08-16T14:40:00.000-05:00

I had the opportunity to attend a workshop at the National Down Syndrome Congress (NDSC) annual convention in San Antonio earlier this month. I enjoyed the speaker, Scott Shepard. Some of my peers were critical of the seminar that he did not speak from an early childhood perspective (they wanted to know how to address specific issues such as stop-drop-and-flop or "runners", etc.). But I've never attended any sort of behavior workshop in the past, so I did find the general information to be helpful. I'm of the opinion that if you can walk out of a workshop with at least one or two "to-do" items, then it was a beneficial workshop.

Here are my notes. Even if you aren't blessed with a child with an extra chromosome, I think you might find some of these thoughts beneficial in your parenting of your "typical" child.

What is the goal? To UNDERSTAND the behavior and WHY it is happening. ALL behavior has a COMMUNICATIVE purpose. By "listening" to what the behavior is saying, we can understand the reason the behavior is happening. So look at behavior as a language.

What IS behavior?
* a STRATEGY we use to get our needs met
* a METHOD of communication
* serves a PURPOSE and is MEANINGFUL
* includes GOOD BEHAVIOR as well as behavior that appears CHALLENGING

We need to teach replacement behaviors.

The A-B-C's of Behavior:
Antecedent (what happens before the behavior)
Behavior (an observable act)
Consequence (outcome or result of the behavior)

Don't just look at the frequency of the behavior... also look at the severity. For example, your child's teacher might mark down that the child STILL has a temper tantrum at the beginning of each class. But it's important to note and acknowledge that the tantrum has gone from 30 minutes to 30 seconds during the course of the semester.

(side note: visual schedules are VERY important for our kids)

Spontaneous reward systems work best. (okay, I wrote this down, but now I can't remember the answer to "Why?")

Elements of communication:
7% verbal
38% vocal
55% non-verbal

We need to say, show, and do.
* Say what you want people to learn, show them what you mean, and do it with them so they understand HOW.

Basic reasons behavior happens:
Sensory
Escape (avoid)
Attention
Tangible reward

We all have the same needs, but we need to change the times, tools, locations, etc.

* Avoid response-cost programs (meaning... don't take away something that the person has already earned)

It's okay to get angry... it's how we DEAL with the anger that gets us into trouble.

My "duh" moment, but worth reminding myself: "There is an inverse relationship between a person's social and communicative ability and behavioral issues." Think: toddler tantrums. Also, remember that this can be one of the main reasons people think that our kids with designer genes have behavior issues. Their communication skills tend to lag the general population, so their "toddler behaviors" tend to last beyond the toddler years. This is why we focus so much on speech and language with Micah. In my opinion, the best way for him to feel included with his peers is for him to be able to communicate with them. And for those of you who have non-verbal children, my recommendation is to find a way for them to communicate with you. That might require an augmentative communication device. Whatever works.

NDSC debrief

2011-08-09T06:30:00.001-05:00

This past weekend I had an opportunity to attend my second National Down Syndrome Congress annual conference. This year's conference was in San Antonio (where it was a tad bit warm). The whole family went last year. It was logistically crazy but a lot of fun. My mom came to help with the boys. We also utilized babysitters (this year's conference offered childcare during workshop sessions).

This year, I went solo. I met a 10-yr-old boy on the airplane. He was fabulous: very confident, obedient, well-mannered, and he spoke very well. I knew after meeting him that there would be many times over the weekend that I would wish I had Micah with me. The reality, however, is that I could not have taken Micah with me. He still has auditory defensiveness. A large room is overwhelming to him. And he still naps (thankfully!).

I really don't know where to start. My mind has functioned in FIFO (first in, first out) mode, so I'm still thinking primarily of what I heard on Sunday. So maybe if I put some bullet points here on the blog, I can come back to it with more detail by topic. Please comment and let me know which topics you'd really like to hear more about.

An amazing young woman, who happens to be a sibling of a young man with Down syndrome, spoke about growing up in Holland. Fabulous! Her name is Jenni Newbury, co-founder of Camp PALS and employee of Special Olympics.
Lots of great workshops:

Inclusion in a private school (Nashville peeps, did you know about what is going on at FRA, of all places?) (I can't start on that right now or I'll be up all night)
Gigi's Playhouse - We MUST get one (or multiple) going in the Twin Cities.
Complex medical conditions affecting education
Behavior and communication
and others that I'm looking forward to listening to when I receive the CD of the conference

Pre-conference session on developing a reading program
Varying opinions of inclusion... "full inclusion" "mainstreaming" "pull-outs"... what does it all mean? and what's best for YOUR child?

I'm planning to do separate blog posts for those topics. Feel free to chime in with your interest level and I'll prioritize accordingly.

FYI... next year's conference is in Washington, DC, from July 20-22. Hope to see you there!

Quick update

2011-07-30T06:50:00.007-05:00

Please pardon my lack of posts and photos. My computer is in for repairs and it will be a couple more weeks before I get it back.

It's been a month since I last updated the blog about Micah's leg. He is getting close to the level of mobility that he had prior to breaking his femur three months ago. He has a very wide stance, so we will be working on that a bit (Holland mommies... think "hip helpers"). But he's getting up and walking more often and that has been very encouraging.

Micah had a very unpleasant experience with some dental x-rays last week. I'll spare you the gory details of how the x-rays were obtained. In a nutshell, his lateral incisors do exist, they just don't have room to come down. One is sideways and the other is still high. But all of the rest of his teeth are where they should be (and we hope he doesn't become a "biter" because he would do some serious damage... I've never seen eye teeth so sharp!).

The best news of the day/week/month: Micah drank 3 ounces of smoothie at lunch today! This is HUGE, as he hasn't allowed 3 ounces of fluid to pass his lips since he was about 3 months old.

Other Micah fun stuff: he loves to dance, especially to a CD of a group called Go Fish; his addiction to Blues Clues is still strong, but he has added Mickey Mouse Clubhouse to the daily requests (had this happened a year earlier, we might have avoided the outright scream fest that ensued when he saw said oversized mouse at a certain theme park last summer); he loves to climb and will attempt to reach the top of any playset he finds (which inevitably means that I have to reach the top as well, in order to coax him down); he is playing a bit more with his brothers these days; his speech and language are progressing well this summer and I hope his teachers find that valuable in the fall when school starts; he continues to be the life of the party, especially in a familiar environment, unless there are noises that send him into crying fits (i.e. a child playing a guitar); his giggle is contagious and he loves to make it a game to keep you laughing with him.

Other Micah medical stuff: upcoming appt with a urologist to address an issue with his "little boy" surgery he had when he was one year old; new prescription for his glasses that will hopefully address the increase in eye crossing he is showing (otherwise, there's still a possibility it would need to be fixed surgically); simple visit at the GI doc this month and we came away with a "healthy child... check up in 6 months".

I'm heading to the NDSC (National Down Syndrome Congress) annual convention next week and I'm looking forward to meeting some of my blogging and Facebook friends there. Micah's SLP is heading there too. I'll also be able to catch up with some of my WI peeps, many of whom are attending sans children as well. Margaritas, anyone? :-) Oh, and I'm sure I'll learn a lot too.

I'd like to wish my hubby a "happy birthday." He's camping with Nathan right now and we'll hopefully celebrate tonight with the whole family. Please say a prayer that Matthew feels better (high temp, extremely swollen glands on the left side of his neck, headache, white dots on throat but strep test negative).

Look, Ma! No brace!

2011-06-29T06:00:00.006-05:00

Micah had another set of x-rays on his leg yesterday. It looks much better. Sorry... no pictures of the actual x-rays this time as I was attempting to keep him quiet enough to hear what the surgeon was saying.

In a nutshell, the bone is filling in nicely. The risk of re-fracture is low. He would like Micah to wear the leg immobilizing brace while he's in the car and when he is fatigued. But Micah is cleared for weight-bearing, including walking with assistance. He actually stood up himself in the middle of the floor and posed for this picture before taking a couple of steps. Woohoo!

On a separate note, Micah also had the privilege of seeing his other orthopedic surgeon yesterday morning for a check-up on his hand. Both of his hands were x-ray'd to make sure that they're growing at an equal rate. Visible on this year's x-rays are the growth plates on the bones on both hands. Last year's x-rays looked like an infant's bones (no growth plates). Long-term plan is to clip the webbing between his fingers to increase the functionality. His middle two fingers, for example, don't move well independently of each other. But we're going to delay that for a while. And we don't go back to see her for a year!

At that appointment yesterday morning I had the privilege of meeting a special military family in the waiting room. Their son, Elijah (almost 2 years old), is recovering from a serious bacterial meningitis infection. He went into septic shock (like Micah) and ended up losing some limbs. He has been inpatient at Children's of MN for 2 months. During that time, he has become a big brother! (can you imagine your child being airlifted to Minneapolis and you living in the hospital with your critically ill son when you were 33 weeks pregnant?). Anyway, Elijah was at Gillette Children's seeing some of the doctors that will be caring for him when he is *hopefully* transferred there for inpatient rehab this week. He is absolutely adorable!

Okay, I needed that reality check. Seriously, Micah had a similar toxic shock experience. By the grace of God, not only did he survive, but he also had no long-term effects. I'm sure that Elijah's parents are just happy that he is alive. But he has some struggles ahead of him. Please pray for this sweet boy. I'll share his CaringBridge page if I get permission from his parents.

Sofa climber and sleep stuff

2011-06-15T15:49:00.001-05:00

There is no photographic evidence of the following event. I left 3 children in the family room and went to the kitchen to get dinner out of the oven last night. I probably left the room for a total of 2 minutes. When I returned, I found Micah on the sofa and not in his comfy chair on the floor. The other two kids hadn't budged. But Micah apparently decided he would rather watch TV from the sofa than from his chair. I'm pretty sure that event did not fall safely into the "no weight bearing" category. (but WTG, Micah, for the motivation to get up?). Have I mentioned that this kid has the best.laugh.ever? He was pretty proud of himself and gave me a hilarious laugh when I asked him how he got there. Oh, well. Seriously... I can't supervise 24/7.

Micah is sleeping well. I can't even believe I'm saying that. We took him off Prevacid. And last night we dropped his decongestant. If we can successfully take him off his nightly pain-reliever, then I'm going to have a nice little chat with Micah's ENT. Why? Because the only thing that's different since the cast experience is that he now knows how to sleep with a pillow. If the pillow is fixing his poor sleep, then wouldn't it make sense that he has had some sort of breathing issue that was making him wake up frequently during the night?

There are some studies that have shown that individuals with Down syndrome sleep poorly. Great information, right? I mean, most parents of a little one with Down syndrome could tell you THAT (history: Micah "passed" his sleep study, aka no apnea episodes, but he had THIRTY awakenings!). But there hasn't been enough research done to show WHY they don't sleep well. I hope to address that at a seminar at the NDSC annual convention (in San Antonio in August... who else is going?). There's a workshop being presented by the director of the DS clinic at Denver Children's that is supposed to address new medical information and controversies. I hope the presenter will be open to questions. And Brian Skotko will be doing a workshop on medical updates too.

I'm so excited that one of Micah's SLP's (speech and language pathologist) will be attending NDSC this year. And she'll be joining Micah's neurodevelopmental pediatrician at the medical professionals conference the first day.

On a separate note, Micah saw his ophthalmologist last Thursday and received a new prescription. His crossing is getting a bit worse and his doc would like to see if new lenses will help. If not, we might have to go back to patching. Or possibly a surgical repair.

Cast is off

2011-06-09T06:52:00.000-05:00

The long-awaited day arrived. Micah had his cast removed yesterday afternoon. He did GREAT with the cast removal. We were warned by the nurses that he would probably cry after it came off due to the sensory change. I was more worried about the noise of the saw which is used to remove the cast. I attempted to minimize this by bringing the iPad and headphones. It worked like a charm. He didn't cry at all... during the cast removal.

But he definitely wasn't happy when the orthotist put the leg immobilizer on his leg. I'm pretty sure he just didn't want anyone touching his legs at that point (that included me, by the way... he was quite irritated when I touched his legs).

I do not have a photo of the x-ray from the day Micah broke his leg. But here's a photo of the x-ray taken at his 2-week checkup (taken through the cast).

And here's a photo of his x-ray taken today (the bright white dot by the bone is just the mouse cursor):

Does this looked healed to you? It doesn't to me. But there is healing going on. You can see faint lines connecting the brokenness together. Apparently this bone will always have a slight lump on it (we felt it today). And apparently anything less than a 20% angle is considered a good fix. But we neglected to ask the surgeon whether Micah's bone growth is taking longer than anticipated.

We had been prepared for a few weeks in the leg immobilizer brace (it keeps his leg straight). But I certainly wasn't expecting to hear, "No weight bearing," for three more weeks. Eesh. I was looking forward to getting him back on his feet. No dice. Not only that, but they have made me terrified of Micah re-fracturing his leg (apparently 1:20 chance). Another quote: "Don't let the leg twist." I'm still not quite sure about this one. I mean, I can control how I move his legs when I change his diapers. But for those of you with kids who have hypotonia, remember back to how our kids sometimes get from sitting to the floor and vice versa?

We were told that Micah can sleep without his leg immobilizer brace, but that was making me nervous. Apparently it made Micah nervous too, because he cried when I took it off when I was dressing him for bed. I imagine that it might feel more secure since he's been wrapped so tightly for 6 1/2 weeks... maybe his leg needed the hug. Whatever the reason... HE SLEPT THROUGH THE NIGHT LAST NIGHT! :-)

Best part of the day: putting Micah into the car after the appointment. His face lit up like he had won the lottery. He started to laugh and he giggled the whole way home. He was SO EXCITED to see out a window again!

Home stretch

2011-06-05T22:34:00.000-05:00

Wednesday is the day the cast comes off. I'm sure some of you are thinking, "Wow, that went really quickly." Trust me... I'm NOT thinking that. :-)

Micah has gotten much more mobile in his cast lately, which has resulted in the need for sleeping modifications (again) because he's rolling over more. Last night I found him asleep on his side with his leg up in the air at a 45-degree angle. We had to put boards on the sides of the toddler bed last week because he slid out the side one night (twice) and woke up crying with his head on the bed and his feet on the floor. He'll be back in his crib on Wednesday night.

On a separate note... I've heard that there are some issues with my blog and Google Reader. Sorry about that. I don't use Google reader, so I'm not familiar with how it works. But apparently there were some spams that went through last week. I hope they were isolated to that one day. Please let me know if it happens again. Not that I know what to do about it if it does...

Three weeks down...

2011-05-16T15:43:00.000-05:00

Sorry for the lack of updates. It's a bit crazy around here.

Micah saw his orthopedic surgeon last Monday (5/9) for x-rays and checkup. I'm no expert, but the bone still looked very broken to me (I should have taken a photo). With a fracture like his and his age, the surgeon had to "reduce" the bone length by about 1cm because it is going to grow faster than the other bone with all of the blood flowing there to heal the bone. I trust the surgeon (he's the pediatric lower-extremity expert here in the Cities), but it still looked yucky to me.

Micah's sleeping took a turn for the worse after my last post. He was waking up about 8 times each night for a while. Ugh. It was difficult to know the cause, so I asked his pediatrician for a Rx for reflux. It seems to be helping. Micah now has most of his sleep issues before midnight and then sleeps until 5:30ish before needing some more help to get back to sleep again. It's much better. So maybe it was reflux after all. Or maybe he is finally getting used to not rolling over at night.

My dad was here visiting this past weekend and we had a nice time. But to go on an outing as a family, we had to take two cars because Micah takes up so much room in the car. We have him laid out in the second row of the minivan. He has a harness that goes around him (with seven adjustments) and we run two seatbelts through that. He has a pillow under his head and one under his legs. He's fallen asleep there a few times, as evidenced below.

We have very much appreciated the love and support we are receiving from family and friends. We sadly had to say goodbye (just for the summer!) to our wonderful babysitter/PCA last Friday. We have two other PCA's for the summer, one of whom started today. He's great! I hope this hasn't been too crazy for him! He'll be working with us for 3 weeks. After that, we have a recently-minted master's in SLP who will be spending the summer working with Micah. Yay!

Micah is continuing to go to therapy (except PT, but more on that in a minute). Here's a pic of him with one of his SLP's, Lindsay.

Micah is going to speech/feeding twice a week and OT once a week. We had dropped PT. But... at Micah's last speech session, his therapists asked me how long he had been biting his arms and hands. Um... I don't know. It's new, I think. The day before, I had seen what I thought was a red spotty rash on Micah's arms and wrote it off to heat rash (yeah, right, I live in MN, but it was 86 degrees one day... nevermind it was 40 a couple of days later). Anyway, they feel that Micah is providing himself with sensory stimulation since he's missing out on all of his mobility. I am so sad about that. My child is biting himself. Any thoughts? We're adding PT back to give him some more stimulation. And hopefully by having a PCA here almost all day, he will be too occuppied to bite anymore.

But just to show that he's not horribly depressed or something, here's a pic of Micah with his cheese face:

Oh, I forgot to mention... Micah's cast will come off on June 8th. He will be in a leg immobilizer brace for a few weeks. He will be able to bear weight and bend at the waist. But it will be a few weeks before he's allowed to bend that leg. Maybe it will be better that way because he will HAVE to walk because he won't be able to crawl.

On a separate note... say something like this happened in your family. And maybe prior to this happening, your family was considering a decision on a separate topic. Would you view Micah's injury as a reason NOT to proceed with that decision because it was a sign from God that your life is a bit too crazy right now? Or would you view Micah's injury as confirmation that you were headed in the right direction because the "opposition" (devil) didn't want you to make that decision? Please discuss. :-)

Mother's Day card

2011-05-03T23:15:00.002-05:00

Lavender Blossoms Mother's Day 5x7 folded card

To view Shutterfly's popular Mother's Day designs, click here.

View the entire collection of cards.

(I got $10 from Shutterfly for posting this here.)

One week in the cast update

2011-05-03T06:55:00.001-05:00

One week down, five(?) to go. Micah is a rock star (most of the time). The first couple of days, we heard him say "all done" on many occasions (as in, "okay, this has been an interesting experiment, but you can give me my legs back now"). The first night at home, he slept fairly well. But it's gone down hill since then. He's not in pain. But to his credit, if I tried to roll over during the night and felt like someone had put lead weights on my hips and legs, I'd get pretty ticked off too. I might even scream out in sheer anger (Micah's modus operandi). For a few nights, those screams occurred hourly. Last night we had about five scream sessions.

I'm hoping that he gets more used to sleeping on his back as the days go on, or these are going to be some rough weeks. We bought a toddler bed and set it up in the downstairs office so that he wouldn't wake up his brothers every time he tried to move. The downside of that is that we cannot work to maintain any semblance of order in the first floor after he goes to sleep (small noises wake him up). So, if you happen to drop by and visit, you might think you've entered a war zone.

Since Micah's gross motor skills have hit a major roadblock, we've decided to engage more fine motor activities.

Mark took the boys to the indoorr park on Saturday. Micah kept asking to get out of the stroller. So Mark obliged, and this is what happened.

Way to go, Micah. You are one determined little dude!

I'm having a difficult time adding photos to this post, for some reason, so I'm going to put them in a separate post.

Micah is in the hospital

2011-04-25T00:04:00.002-05:00

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

2011-04-18T06:00:00.001-05:00

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...

2011-03-22T00:42:00.000-05:00

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...

2011-02-19T06:59:00.000-06:00

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

2011-02-08T19:15:00.000-06:00

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

2011-02-04T06:45:00.001-06:00

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

2011-01-10T06:50:00.001-06:00

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

2011-01-04T21:15:00.000-06:00

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

2010-12-02T14:10:00.002-06:00

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

2010-11-25T00:15:00.000-06:00

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

2010-11-14T22:54:00.000-06:00

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

2010-11-11T06:50:00.001-06:00

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?

2010-11-07T16:30:00.000-06:00

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

2010-10-31T23:30:00.000-05:00

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

2010-10-30T22:14:00.000-05:00

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

2010-10-29T23:30:00.001-05:00

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?

2010-10-28T13:14:00.001-05:00

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

2010-10-27T22:30:00.002-05:00

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

2010-10-26T21:30:00.001-05:00

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

2010-10-25T23:57:00.001-05:00

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.

31 for 21... please pray for Lois

2010-10-24T21:45:00.001-05:00

I'm sitting here watching the Packers game and catching up on a bit of my blog reading and doing the MOPS directory (you can call me the multitasking queen, as I'm also in control of the remote to fast forward through the commercials since we're watching the game on DVR because we had to put the kids to bed).

Anyway... I was just brought to tears when I went to Catherine's blog. Her daughter, Lois (a member of the designer genes club, aka she has Down syndrome), just turned 3 years old a week ago. Lois has leukemia. Initially, it was the high-cure-rate kind and she went into remission. But she relapsed. Her only chance of survival is getting into remission again and then getting a BMT (bone marrow transplant). After each round of chemo, she gets tested to see if she's in remission.

This is Lois:

Lois is not in remission. So she has to go through another round of chemo. Each round is more intense than the previous one. Each one gives a higher chance for the chemo to kill something good in her body, not just what's bad.

Please pray for Lois and her family. No child should have to go through this. And no parent should have to either. But our kids with this extra 21st chromosome have a 10-15 times higher likelihood of getting leukemia than a typical kid. But I'm sure that knowing that doesn't make it any easier when it happens to YOU.

31 for 21... Micah's eating skills

2010-10-23T22:54:00.000-05:00

I've discovered a major upside to this 31 for 21 thing... I can look at LAST October and see progress.

We've been gradually adding a bit of wheat germ to Micah's yogurt in an effort to get him more comfortable with textures in his food. He seemed to cross some sort of threshold a few weeks ago and he can now handle a very thick, grainy consistency. So I decided to try Stage 3 foods on him this past week. And what do you know? He's eating it! He doesn't know how to chew, so he's swallowing the small chunks of carrots whole (with the occasional gagging incident). But that's great progress because he used to gag and puke if any sort of texture would hit his tongue.

Micah is doing great with his therapists too. He goes to private feeding twice a week (once with an OT, once with a SLP). We also added private PT at the same clinic a few weeks ago and he immediately responded well to her (that's not a common occurrence for Micah... it usually takes him a long time to warm up to a therapist). The school district has therapists who come to see him at home too: PT, OT, SLP, and DT. Micah seems to be doing a bit better at his private therapy sessions lately. I think that's somewhat related to me not being in the room with him... which might be another good reason for him to start school soon... (more on that later). Back to eating...

Micah will make an attempt at self-feeding occasionally. I think it's time to "force" him into that (give him a spoon and a bowl of yogurt and let him go to town). But I definitely need to be more comfortable with spending time cleaning up after meals, if you catch my drift.

One thing that Micah is NOT doing is drinking. Anything. At least for me. He might take a sip of milk or water, but after that I get a "No!" I think he drinks more for his SLP.

So, just to reminisce, I'll end this blog posting with the same paragraph as last year's post:

One of these days we'll be able to get rid of the feeding tube. It could be a year or two. But it's so wonderful to see progress!

     GLOSSARY:
     SLP - Speech and Language Pathologist
     OT - Occupational Therapist
     PT - Physical Therapist
     DT - Developmental Therapist, aka Special Ed Teacher (are they one and the same? I'm not exactly sure.)

31 for 21... the Cornish family

2010-10-22T09:30:00.000-05:00

"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world." ~ James 1:27

What does James 1:27 mean to you?

For many of us, it means doing what we can to help another family adopt a child. Not all of us are called to bring another child into our home. But there are some who ARE called.

Here's a photo of a family. Can you tell which ones are biologically "theirs?"

Aren't they beautiful? And just think... they're missing TWO! Yes, two children who currently live in the Ukraine. One, Monroe (aka Wesley) whom they "know" will be coming home this fall. The other... well, I'll let you watch the video to hear about Aleksa.

Make video montages at www.OneTrueMedia.com

I met Meredith Cornish at the NDSC convention in Orlando in July. Their family is hard to mistake for anyone else. I introduced myself, as I feel I "know" her through the blogosphere. And I'm a bit biased toward a family that has a little Micah in specs. :-)

Could you do what they have done and continue to do? I don't think I could (though I didn't think I could do all that we've had to do with Micah, either, but I believe that God gives you the strength to handle the trials and challenges He presents to you, as long as you accept HIS strength and don't try to rely on your own strength).

I can't think of words worthy to describe how I admire the Cornish family.

31 for 21... Life expectancy

2010-10-21T15:05:00.001-05:00

In response to a question from my friend, Lisa... what contributes to the life expectancy of an individual with Down syndrome?

History:
1929 - Life expectancy of an individual with Down syndrome was 9 years
Today - 55-60 years

What has caused the increase? Answer: primarily medical care (though I would also like to add that back in 1929, most individuals with Down syndrome were institutionalized, and I'm sure that environment would play a role in someone having a shorter life expectancy)

Specifically, intestinal surgery, heart surgery, infections and leukemia treatment. Approximately 50% of individuals with Down syndrome are born with a CHD (congenital heart defect). Approximately 12% are born with some sort of digestive issue. And children with Down syndrome are 10-15 times more likely to develop leukemia (though their response to treatment, I've heard, is usually better than a "typical" child who develops leukemia). Additionally, children with Down syndrome are 62 times more likely to develop pneumonia. And they are 12 times more likely to die from infectious diseases, if left untreated. They tend to get more ear infections than the general population, primarily due to VERY narrow ear canals.

If he had been born 50 years ago, Micah would have died soon after birth due to his duodenal atresia. And if it hadn't been the intestinal blockage, it would have been his heart defect. He went into heart failure around 5 weeks of age. It was managed through medications up to his surgery at 4 months (he's still on a medication, due to leakage in both his mitral and transcuspid valves... he'll likely be on that medication for life... most kids who have that same repair do not have to stay on a medication and they get cleared by their cardiologists quickly... Micah still sees a cardiologist every 6 months).

Anyway... one huge benefit to the life expectancy increasing is that they have found additional health issues that hadn't been studied in the past. The most major one is that the incidence of Alzheimer's in individuals with Down syndrome is significantly higher than the general population, and its onset is typically earlier. Why is that a benefit? A lot of the current Alzheimer's research is focusing on the 21st chromosome.

So to answer Lisa's question about life expectancy... yes, the lower life expectancy is related to health issues, whether that's intestinal obstruction, cardiac defects, or leukemia in the early years, or Alzheimer's/dementia in the later years. Micah's duodenal atresia won't lower his life expectancy at this point. But he's at a bit higher risk for pulmonary hypertension later in life, I think.

31 for 21... Wordless Wednesday... fall photos

2010-10-20T23:00:00.001-05:00

31 for 21... fertility and Down syndrome

2010-10-19T23:00:00.000-05:00

I received a question on Facebook about whether individuals with Down syndrome are able to have children. The simple answer is that women who have Down syndrome are (I believe) as fertile as their "typical" peers. Men with Down syndrome, however, are largely considered to be infertile. There are apparently a few cases where they have fathered children.

Thanks for asking, KLT.

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

2010-10-18T23:15:00.000-05:00

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...

2010-10-17T19:44:00.001-05:00

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?

2010-10-16T22:45:00.000-05:00

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):

Hypotonia
Ligamentous laxity
Decreased strength
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

2010-10-15T16:59:00.000-05:00

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

2010-10-14T17:34:00.000-05:00

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?

2010-10-13T14:57:00.001-05:00

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...

2010-10-12T19:31:00.000-05:00

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

2010-10-11T22:00:00.002-05:00

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

2010-10-10T10:48:00.005-05:00

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

2010-10-09T13:14:00.001-05:00

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?

2010-10-08T17:13:00.000-05:00

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

2010-10-07T21:19:00.001-05:00

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

2010-10-06T22:00:00.001-05:00

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

2010-10-05T22:00:00.004-05:00

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.