Back online

We've moved into our new house and I finally have internet access (six days later... you'd think I might have actually withered away by now). We still don't have a working stove, but as of yesterday we have a gas line in the kitchen so that we can now connect the stove. However, that involves finding someone to help Mark LIFT the stove over the island because the kitchen is rather small and with the refrigerator in place, we can't simply move the stove through to its intended location. But the grill and microwave works, so we're not tied to take-out (though having a Buca di Beppo a mere five minutes from our house could be dangerous... one order almost took us over our monthly dining out budget!).

I'll try to post more soon, but I'm swimming in boxes. My dad arrives tomorrow. He leaves on Tuesday and Mark's parents come that day for Thanksgiving weekend. We're looking forward to seeing everyone, but I hope their expectations are low!

Thankful A to Z: F=Friends

F is a tough one. I first thought "Family." But also in the running was "Food." I figure food is a given. And family will hit some other posts.

Possibly coincidentally, there are a couple of friends with whom I have lost touch since getting Micah's diagnosis two years ago. But maybe it's not a coincidence. Maybe they don't know what to say. After a few months of reaching out to them, I gave up. If I think about it too much, I get sad.

But those friends aside... I have felt a crazy amount of love expressed by our friends near and far. Thick and thin... faithful friends. I'm not the easiest person to love. But there are some dear women in my life who have been there to listen, on the phone or in person. They've given advice, or simply been silent. They've cried with me. Laughed with me. Prayed with me (some at 5:30 on Monday mornings!). And never did they try to make me feel guilty for what I feel.

So, thank you, sweet friends, for your faithful support of me and our family during this journey we're on. I love you!

Thankful A to Z: E=Emily Perl Kingsley

It seems appropriate on Sesame Street's 40th birthday to mention Emily Perl Kingsley. She wrote the story: Welcome to Holland. It was one of the first things sent to me after we received Micah's diagnosis. Link here for the text. This story made me feel like I wasn't alone. And through it I realized that the sooner I accepted that Italy wasn't going to be our destination, the more I would enjoy Holland.

Ms. Kingsley has a son with Down syndrome and she is a writer for Sesame Street. I'm fairly certain that she has had a major impact on the show having actors with disabilities.

I've actually heard of people not letting their children watch Sesame Street because it doesn't portray an accurate view of society (too "politically correct"). But I can't help but think that maybe, just maybe, one of Micah's future classmates will accept him as he is because she learned on Sesame Street that kids who are "different" aren't really that different after all.

Thankful A to Z: D=Digital photography

I cannot imagine having to keep track of prints and negatives during this crazy busy season of life. Digital photography rules! I can look back on my laptop to find photos of previous moves, such as when Mark found a job in Orlando and "followed" me there in 2001.

And I can also find out by looking on my laptop that I took no photos of our move from Orlando to Nashville in 2002 when we returned from our honeymoon, two weeks before Mark started grad school.

I can find a photo of Jody following the asked-far-too-late question, "Hey, did you already shake this can of primer?" while she was helping us move into our house in Atlanta in 2004.

Then there's the big rig in front of our Atlanta home in early 2007 to move us up to Wisconsin.

And the photo taken from the front porch this morning... an empty truck before the loading began this afternoon.

For those of you counting... since Mark and I started dating, we've moved from Nashville to Orlando to Nashville to Atlanta to Wisconsin to Minnesota. Yes, that's five moves since we started dating in 2001. Serenity now!

Thankful A to Z: C=Children's Hospital

Micah was supposed to have been born at Froedtert Hospital (the birthing center is attached to Children's Hospital in Milwaukee). We didn't make it there for the delivery. But so much of Micah's first year was spent at that hospital under wonderful care that I couldn't let this month go by without expressing how thankful I am that this hospital, and hospitals like it, exist.

I can't imagine going through all of Micah's "stuff" without knowing he was in the capable hands of doctors and nurses who specialize in caring for children. We didn't *always* have the best experience while he was inpatient (October 2008 sticks out in my mind). But the vast majority of our time there was excellent.

In fact, Micah had his last visit at the Feeding Clinic five weeks ago before we moved. I confess... I cried most of the way home. I have made that drive with Micah countless times. There are so many people there who KNOW him and all of his stuff. I will miss that feeling of security going there. I know Micah will have great doctors here in MN. But they aren't all with the same hospital group. And they haven't been with him since day one.

Thankful A to Z: B=Brothers

We have so much for which to be thankful. I love love love that our boys have multiple brothers that will be their lifelong friends.

(Thanks for the great photos, Heidi)

Thankful A to Z - A = Andrea and Ann

Okay, Kim, I think you sucked me in (though Mark is not going to be very happy to again be a blogging widower after the frequent postings in October). Kim at A Walk in Lily's Garden has started to list things for which she's thankful for the rest of the month. I think it's a great idea, so I'll make an attempt.

I'm thankful for Andrea at Unfailingly Loved and Ann at MommySecrets for sharing words of encouragement with me. These are two faithful friends who love the Lord, encourage others, and are great moms. Love you, ladies!

(and by the way... Micah is 22mos old today, Matthew turned 9mos on 11/3. Micah pulled up to standing by using the sofa yesterday for the first time. Yay, Micah! And Matthew is creeping along the furniture now. Micah has two upper molars now in addition to his lower 2 teeth, and I think he's cutting a molar on the bottom now too... weird teeth introduction for him. Matthew just cut his first tooth on the top today, which hopefully explains his CRUDDY sleeping for the past week or so. Nathan, on the other hand, cannot blame teething as an excuse for his cruddy behavior of late. I'm hoping we can chalk that up to all the changes going on with the stress of moving and that the behavior issues will subside once we get settled in our new house. We close in a week!)

Day 31 of 31 for 21 - Tigger, Pooh and Piglet

I think it's appropriate, on this last day of Down syndrome Awareness Month, to remind you that kids with Down syndrome are KIDS FIRST. They do everything that other kids do. They are offspring. They are siblings. They are friends. They can be Pooh bears.

We joined with another family (second cousins once removed, I think) for dinner and a bit of trick-or-treating. S is one month younger than Nathan, S is 2 months older than Micah, and E is one week older than Matthew (and 8 pounds lighter, I might add!).

(yes, I put a son in a pink costume, but Piglet is a boy and the name truly fits!)

Day 29 of 31 for 21 - I got nothin'

Seriously. Nothing to say, really. I mean, should I bore you with more information about Down syndrome? Add more links to share about some of the cool things that people with Down syndrome have accomplished? Talk about more of the medical stuff?

Nope. Not today. Why? Because m3s (my 3 sons) are sleeping and I want to do the same.

Day 28 of 31 for 21 - Wordless Wednesday

Sweet Micah

Nathan's preschool class after their "program" today

This morning...

June 2006...

Day 27 of 31 for 21 - New doctor for Micah

Doesn't this look like the beginnings of a game of "Ha" ?

(no, you didn't miss something... I didn't post yesterday. I was planning to post last night but Micah had a rough evening and ended up crying almost all night long. No fun. He still has a cough today, but no fever.)

Micah saw a neurodevelopmental pediatrician today. She specializes in kids with Down syndrome. We arrived at 8:40 for his 8:45 appointment and we left the building at 12:00. The poor little guy didn't get much sleep last night (nor did I... Mark is away on business), so by 11:00 he was basically past tense.

Anyway, I LOVE LOVE LOVE this doctor. This is one of the reasons I was looking forward to moving here. She is a wealth of knowledge about Down syndrome. She truly read ALL of his records from all of his previous issues and asked me a lot of questions while we were there. And she was very encouraging too, which I definitely needed today. In general, she's very pleased with where Micah is developmentally, especially given all of the health issues he has had. I need that reminder sometimes. It's so easy for me to compare him to all of his buddies that we left in the Valley (who were all walking at age 2) and get sad about how he doesn't bear much weight on his legs yet. But I have to remind myself that most of them didn't spend over 3 months in the hospital their first year of life.

Therapies - We need to focus on eating and speech, and we will look into private services to supplement Early Childhood. He will walk eventually. But we need to get a good foundation for speech sooner rather than later. She feels good about the therapies available through our new school district (Birth to Three services are provided through the school system here in MN, rather than through the county, which is how WI runs Birth to Three). But she also recommended a private SLP (speech and language pathologist) who specializes in muscle-based oral motor skills (Talk Tools... anyone out there have kiddos working with this program?).

ENT - At Micah's August visit to the Feeding Clinic in MKE, he had a swallow study done. The SLP who did the swallow study said that Micah's tonsils weren't affecting his swallow, but her opinion was that they were blocking about 50% of his airway. Dr. M (who we saw today) looked in Micah's mouth (not an easy task, I might add) and she couldn't see his uvula because his tonsils were so big (though she did consider that she couldn't see his uvula perhaps because he was screaming!). She recommended we talk to ENT. It's possible that Micah's tonsils are causing him to breath through his mouth which might be why he doesn't sleep well. We'll see an ENT next week and get his opinion.

Cardiology - We received a referral to a cardiologist from Micah's cardiologist in the Valley. She has a good reputation here, but she's at "the U" (meaning, she's at University of MN rather than at Children's Hospital... there's also Gillette Children's... confusing around here with so many options). Dr. M thought it would be better for Micah to see a cardiologist at Children's since he would likely have most of his care there (i.e. ENT). But the U is known for cardiac surgery. And I do want Micah to be seen by an ophthalmologist at the U (a recommendation from Dr. G in Madison). And since Micah might need eye surgery next year... ugh. Decisions.

Orthotics - Micah was measured for orthotics today. Many kids with Down syndrome have very loose ligaments in their ankles and that can cause pronation. Micah is no exception. So we're getting him some Sure Steps to help support his ankles while he stands. I've heard other parents say that their kids were much more confident in the standing position after getting their Sure Steps. Micah's will arrive in about 2 weeks and we'll go back to have them fitted at that time. For those of you whose kids already have them and you're wondering what pattern we chose, Micah will be wearing the stylish "Traffic Soup" pattern. :-)

That's all the news that's fit to print.

Day 25 of 31 for 21 - the Garcia's

For my friends who don't know Renee at My Special K's, I just want to share a bit about their family (I hope you don't mind, Renee... I just think you're super cool). They're getting closer to their adoption date. That might not sound very unique, but here are some tidbits about them that I find to be great:

1. They're a military family.
2. They live in TN (we used to live there too!).
3. They have 4 children (2 boys and 2 girls) whose names all begin with K and have 7 letters.
4. One of their girls has Down syndrome (she's their 3rd child).
5. That same girl has conquered leukemia and had major surgery to repair her atlantoaxial instability.
6. They're very close to bringing home girl #3 through an international adoption (Eastern Europe).
7. This little girl also has Down syndrome.

Did you know that in many countries, many children with Down syndrome are orphaned and institutionalized and basically left to die? I think it's incredibly cool that families like the Garcia's take a leap of faith and bring a child home who might otherwise die young, nevermind receive a mother's love.

There is an amazing organization called Reece's Rainbow that enables you to help save some of these children. Not everyone is called to adopt , but we've all been encouraged by God to care for orphans (James 1:27 - "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.").

If you feel led, you might be interested in the following video (be forewarned... it's 12 minutes long... and you'll need some tissues). I couldn't get it to link well, so you'll have to click here.

And it you'd like to help the Garcia's bring Kellsey home, please visit their adoption blog and contribute (though I think they have to make their blog private soon since they're leaving soon for Eastern Europe).

Day 24 of 31 for 21 - Pray for Polly

I just read about a sweet little girl named Polly (through Renee at My Special K's (I'm working on a post about Renee's family too... ha, Renee, are you nervous?). Polly has Down syndrome. And best I can tell from her mom's blog, she's almost 4 years old. She was just diagnosed with Moyamoya disease, which is basically constriction of some arteries in the brain. She will go through brain surgery in November.

Does this fall into the category of things that are more likely to happen to our kiddos with designer genes? From my personal experience, Micah has a narrow airway, narrow ear canals, and is a difficult "stick" (it's sometimes a bit challenging to draw blood from his little veins).

Whatever the cause, it simply stinks. This sweet little girl had some seizures last week and now she needs brain surgery.

This wonderful family lives in the Chicagoland area and S is a pastor of a church. The family adopted a little girl from the Ukraine this summer. She also has Down syndrome.

Please pray for Polly.

Day 23 of 31 for 21 - AV Canal

I know I'm skipping over a few questions and answering this one first. I received an email question about Micah's heart defect so I thought I'd address that one as I'm thinking of it.

Almost 50% of babies with Down syndrome have a heart defect. Almost half of those are an atrioventricular canal defect (AV Canal, or AVSD, atrioventricular septal defect). We thought we were in the clear (as it relates to heart defects) before the ultrasound at 24 weeks. The perinatologist was looking for it and didn't find a problem at 21 weeks. So it was a HUGE surprise to us when I had my ultrasound in Milwaukee during our day-long meet and greet with the staff at Children's who would be caring for Micah after he was born.

In a nutshell, an AV Canal is a combination of multiple heart defects: an ASD (hold between the atria), a VSD (hole between the ventricles), and improperly formed valves. Micah had 2 ASD's, 1 VSD, and his valves were a mess. Here's some information from the Children's Hospital website:

Why is atrioventricular canal a concern?
If not treated, this heart defect can cause lung disease. When blood passes through both the ASD and VSD from the left side of the heart to the right side, then a larger volume of blood than normal must be handled by the right side of the heart. This extra blood then passes through the pulmonary artery into the lungs, causing higher pressure than normal in the blood vessels in the lungs.

The larger the volume of blood that goes to the lungs, the higher the pressure. The lungs are able to cope with this extra pressure for a while, depending on exactly how high the pressure is. After a while, however, the blood vessels in the lungs become damaged by the extra pressure.

As pressure builds up in the lungs, the flow of blood from the left side of the heart to the right side and on to the lungs will diminish. This helps preserve the function of the lungs, but causes yet another problem. Blood flow within the heart goes from areas where the pressure is high to areas where the pressure is low. If the septal defects are not repaired, and lung disease begins to occur, pressure in the right side of the heart will eventually exceed pressure in the left. In this instance, it will be easier for oxygen-poor (blue) blood to flow from the right side of the heart, through the ASD and VSD, into the left ventricle, and on to the body. When this happens, the body does not receive enough oxygen in the bloodstream to meet its needs, and children may become cyanotic, or exhibit a blue coloring in their skin, lips, and nailbeds.

Because blood is pumped at high pressure through the septal openings, the lining of the right and left ventricles will become irritated and inflamed. Bacteria in the bloodstream can easily infect this injured area, causing a serious illness known as bacterial endocarditis.

For those of you who are visual learners, here are some pictures:

If you're interested in even more information, click here.

Micah's congestive heart failure kicked in around 4-5 weeks (he was still in the NICU). For Micah, that meant he started having difficulty breathing (you could see his chest retract), his breathing rate increased, he was occasionally clammy, and he had more difficulty eating. His lungs were working overtime to handle the oxygen-rich blood that was flowing back to his lungs. He was on a few heart meds (digoxin, captopril, and lasix).

Micah had a rough go with his heart surgery (May 5, 2008, on his 4-month birthday). He ended up going back on bypass twice and left the OR with his chest open (they closed him 3 days later). It was a difficult recovery for our little rock star.

Micah still has moderate regurgitation (leakage) of his mitral valve. This is not unusual, but we do want that regurg to become mild rather than moderate. He'll likely be on a heart medication for the rest of his life. But he's doing great. He's at a slightly higher risk when it comes to respiratory illnesses, though, so we're really praying he doesn't get the flu. So far, so good!

Day 22 of 31 for 21 - an artist's game

This video is absolutely amazing! It's only 4 minutes long and well worth it. Make sure you turn up your volume and truly listen.


(if you're reading this in email, then link here for the video)

Day 21 of 31 for 21 - Wordless Wednesday

Save the Date!

My friend, Melanie, at Baeten Family is coordinating (along with DSFN) a new Down Syndrome Awareness Walk in the Fox Cities. The date is October 2, 2010. We plan to visit that weekend and attend the walk (it's at Riverside Park). For all of our friends "back home," we'd love for you to save the date and walk with us! It would be extra special fun if Micah was able to walk it instead of riding in the stroller. Another huge perk... Rachel Coleman will be speaking and doing a performance of Signing Time. For those of you who haven't seen the videos, Micah is an addict! It's been so helpful in teaching him sign language. Rachel has two children with special needs and I'm looking forward to seeing a live performance.
Curious about Halloween signs? See the following video:



And just for kicks, here are some Thanksgiving signs:

Day 20 of 31 for 21 - Stir Crazy, sick baby, Micah eating

We've been in our apartment for 10 days now and I think we're all climbing the walls. Only 3.5 weeks to go!

Matthew went through a scream fest last night and finally ended up sleeping from about 10-4. He's on antibiotic #2, which he received on Friday evening after 5 days on amoxicillin did not do the trick. As of this morning, his ear looks better than it did on Friday, so we're hoping that this 10-day course on augmentin will do the trick. Way to make friends with the new pediatricians after only being here a week.

Micah is eating well, as long as it's baby cereal mixed with a fruit. He's not doing well with anything else right now. I'm not sure if it's the flavor or the texture or the consistency. But he took 6 ounces of it tonight! He's probably take a 4-ounce container of stage 2 bananas too, but he doesn't need the constipation assistance!

Day 19 of 31 for 21 - Peter Becht

Another inspirational individual (thanks for the link, Wendy). Click here to see a news article on a young man with designer genes who earned the status of Eagle Scout. He met all of the requirements (including 24 badges, more than the required 21). The only concession made for him was that his troop leader was able to get him an extension to age 19 since he was still in high school.

My favorite part might be his quote: "Down syndrome doesn't mean I'm stupid. It means it takes me longer to learn the same things you do."

Day 18 of 31 for 21 - Brandon McLilly

Click here to read about a special young man, Brandon McLilly, who influenced many lives for the better during his short 16 years on earth. He died recently of H1N1. He had Down syndrome. I love that he inspired greatness in his siblings: his sister started a daycare for children with special needs.

[It's been a rough weekend with Matthew's ear infection... we had to change antibiotics on Friday because after 5 days on an antibiotic it appeared he was feeling worse... and he's still worse today... no fever, just terribly uncomfortable.]