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.]

Day 16 of 31 for 21 - Naming our kids

I've been tagged by A at The Narretto Family and Kim at Rees's Pieces to share the origin of our children's names.

Nathan William - I mentioned this yesterday, but Nathan means "gift of God." It was a very appropriate choice for this child for whom we prayed for years. William is a family name on both sides. Nathan has an Uncle Bill, a Great Uncle Bill, a Pop named Bill, and he would have had a Great Grandpa named Bill had my mom's father been alive when Nathan was born. It's also Mark's middle name. Before we found out his gender at the 20week ultrasound, we had an Elite Eight list of names (combination first and middle): four girl names and four boy names. So once we found out he was a boy, we had a Final Four. Maybe someday I'll post a video of us finding out he was a boy. We were at a party with a bunch of friends in Nashville. Other friends and family were on a conference call, and we opened the envelope from my perinatologist and everyone heard, "It's a boy!" at the same time. It was super fun!

Micah Louis - Until about two weeks before Micah was born, we thought his name was Noah. As my due date approached, Mark became less sold on that as his name. The name Noah was growing in popularity and Mark didn't want him to have others in his class with the same name. I had done a little research on consonants and which ones would be more difficult for him to say based on speech issues he might have. When Micah arrived early, he arrived without a name. He was transported to Milwaukee the afternoon he was born. Mark decided to stay with me that evening, get some sleep, and head for Milwaukee after we decided on a name. We were pretty sure about the name Micah before he left (Micah is similar to Michael, and it means "who is like God?"), but he didn't have a middle name. We arrived on his middle name later that night. Louis means "famed warrior." It was very important to us to have a strong name for Micah as we knew he would be fighting some battles in his life. Louis is also my brother's middle name and it seemed appropriate since he and his wife would be guardians of m3s if anything ever happened to us.

Matthew Taylor - Matthew also means "gift of God." It was in the Final Four list for Nathan. Of course, we didn't use Nathan's Final Four list... Mark had to start over with each child, so I thought it was hilarious that we landed on a name that we had chosen over three years earlier. Mark went to Taylor University (small, Christian college in central Indiana) and Taylor U was named in honor of a missionary and author named Bishop William Taylor.

In the interest of continuing the chain of names, I'm tagging the following people to tell us about their children's names:

Amy at A Scrapbook of Sorts
Melanie at Baeten Family
Heidi at Nuts and Boltz

Day 15 of 31 for 21 - Remembrance Day

October 15th is Pregnancy and Infant Loss Remembrance Day. I think today is the best day to address a question I received yesterday (anonymously). Here's what the reader posted: "I'm curious about what the decision was like to have a 3rd child. it had to have been scary. yet maybe by that time, you knew even if you had another child with SN you would be able to handle everything. not sure if your 3rd was planned (and none of my business). just so curious since so often fear gets in our way & it looks like it didn't for you. which is really remarkable."
[note from Jennie: for those of you not "in the community" or close to someone who is, "SN" means "special needs"]
[to anonymous: thanks for the "remarkable" comment... it's only by God's grace]

To answer that question fully requires some history. I'll do my best to be brief.

We struggled through infertility before we were blessed with Nathan. I won't go into all the details, but his name means "gift of God," and he is definitely that (I've been tagged to tell about the names of my children and I'll do that soon). After Nathan was born, we figured it would take another long journey to conceive again, so we started trying a few months after Nathan was born. We were wrong. We listened to my OB say "twins" at an ultrasound in April 06, and I can't count the number of times Mark said, "Wow" while holding Nathan, then just six months old. We became extremely excited to be joining the twins club. Fast forward two ultrasounds later and we found that we were not going to meet these little ones. It was the worst day of my life. I'll spare you the gory details. But you need to know that Joshua and Eli are still present in my thoughts and dreams. At the time I wanted no one other than our closest friends to talk to me about what we had gone through. Now here I am sharing it with complete strangers. I guess that's part of the healing process.

After that, God chose to walk us through infertility yet again. And we had to move for Mark's new job. It was almost a year later and we found out I was pregnant (after taking 8 days of Lupron shots for IVF... can you believe it?... the month we were going to try IVF and God gave us a little life without needing IVF?... sure you can believe it... read on). Because of the Lupron, I had to take progesterone and estrogen through the first trimester. And I had a SCH that caused a bunch of bleeding and we were given a 50/50 chance of miscarriage. But God wanted us to have this baby. THIS baby: Micah. (but picture, just for a moment, us having Nathan, Joshua, Eli, Micah and Matthew... five boys in under 3.5yrs?... no, it would never have happened, for more than one reason, and I'll share that below).

Yes, Micah was the next child God wanted us to raise. But it wouldn't be right for me to lie and tell you that I wasn't angry. And during those initial days after receiving Micah's diagnosis, I was angry not just about him having Down syndrome, but because I felt like God took away my twins and gave me a boy who was flawed. I know better now, but those early days of diagnosis are very dark days.

We always wanted 3-4 children so we didn't have my tubes tied after Micah, though we were asked again about it in the OR during my c-section because I had a major uterine window that would have ruptured if I had labored another hour (and did I mention that maybe, just maybe, that's why God took the twins when He did?... maybe the uterine window would have ruptured, killing both of them and I if I had carried them to "term"... not that this possibility makes me miss them less, but, well, don't we all try to figure out God's plan sometimes?). And, of course, we were crazy busy with Micah and open-heart surgery, and my brother's wedding, and... who would have thought...

That we would have a SURPRISE pregnancy! Yes, Matthew was a surprise, but we weren't preventing a surprise, if you know what I mean.

Just to let you know, the odds for having another child with Down syndrome didn't increase for us after having Micah. They put the odds at 1% for everyone (edited to say that I meant everyone who had a child with Down syndrome already), but by age 40 the odds are higher than that anyway. We weren't worried (though my perinatologist must have thought we were because she was pointing out every little thing about Matthew during my 20week ultrasound that showed that he likely didn't have anything wrong with him). I guess part of that lack of worry for us was because we figured even if we ended up with another child with Down syndrome, the odds were in our favor that that child would not have all the medical challenges that Micah has. But the primary reason was that after everything we had gone through up to that point, we knew that God was the One who was painting our family's portrait. He would give us the child He wanted us to raise. And He would choose whether that child would have Down syndrome (or something else much worse), or whether he would have blue eyes and an ear-piercing scream like you've never heard before.

All that to say... the choice to have a third child wasn't scary (and I usually consider him my fifth anyway). We knew we would have three or more. We just didn't know whether the next child would be our biological child or whether we would adopt. And we still might adopt someday, but that's a topic for another day.

Thanks for asking. Keep the questions coming. We're only halfway through the month.

[By the way, I saw our new house for the first time yesterday. Yes, it's true, Mark found the house over a month ago and we put a contract on it even though I had never seen it. It's very nice and I can't wait to get into it and get out of this apartment!]

Day 14 of 31 for 21 - Wordless Wednesday (sort of)

Seriously... this was Nathan on his first day of preschool in the state of Minne-SNOW-ta (photo taken on Monday). They tell me that this was a record for early snowfall. Or was it just our not-so-warm welcome?

Day 13 of 31 for 21 - Sibling feuds beginning

Do you see what this little you-know-what is playing with?

That's my book!Well, I'll just have to take it away.Victory is mine!

(The same thing happened with the next book you see Matthew reaching for, by the way.)

And here's Matthew's new trick: pulling up to standing (which is occurring, thankfully, later than Nathan's first steps).

Day 12 of 31 for 21 - The Creed

The Micah Mohawk!

I don't know who wrote the following poem. I've posted it before. But it seems appropriate to share it this month.

Down Syndrome Creed:

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

Day 11 of 31 for 21 - The photos say it all

Yep, this pretty well sums it up. Matthew was sort of watching the Titans get clocked while Mark slept. Nathan fell asleep in his bed with his pillow on his head.

It's been a challenging and busy weekend. But we're in our temporary apartment. And what kind of boring weekend would it be if we didn't have a trip to a doctor's office? Matthew has an ear infection. We have no idea what is wrong with Micah. He has been very lethargic today (he won't sit more than 30 seconds before just lying down on the ground). His temp on Friday night was 101.5 and it's been 99.5 since then. They ran a quick CBC and found nothing remarkable. So, it's probably a virus. But if he's still like this tomorrow, we're supposed to take him to his pediatrician. Right. I have an interview scheduled with one on Wednesday.

Nathan has his first day at a new preschool tomorrow. And I'm interviewing some potential babysitters. I was supposed to go see our new house (since I have never seen it before... I'm trusting my hubby on this one), but the current owners have a sick kid.