A Little Something Extra

Saturday, October 31, 2009

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!)

Thursday, October 29, 2009

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.

Wednesday, October 28, 2009

Day 28 of 31 for 21 - Wordless Wednesday

Sweet Micah
Nathan's preschool class after their "program" today
This morning...

June 2006...

Tuesday, October 27, 2009

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.

Sunday, October 25, 2009

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).

Bringing Kellsey Home

Saturday, October 24, 2009

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.

Friday, October 23, 2009

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)

Tuesday, October 20, 2009

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!

Monday, October 19, 2009

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."

Sunday, October 18, 2009

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.]

Friday, October 16, 2009

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

Thursday, October 15, 2009

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!]

Wednesday, October 14, 2009

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?

Tuesday, October 13, 2009

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).

Monday, October 12, 2009

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

Sunday, October 11, 2009

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.

Day (10) of 31 for 21 - Moved

We made it here to MN last night but I didn't get my computer turned on. Had I been prepared, I would have scheduled a timed posting ahead of time. Oh, well.

I would like to thank the great Artist who painted such a lovely autumn portrait during our drive yesterday. Fall is my favorite time of year. But I'm not a huge fan of snow flakes accompanying the changing colors of the leaves. Yes, there were snow flakes yesterday, not during our drive, but in the morning before we left. Apparently it even stuck to the ground a bit in MN yesterday morning. I'm not ready for this!!!

We considered renting a minivan for this trip and cramming everything into two minivans and a sedan. We're very glad we didn't. We came close to filling a 10-foot moving truck! It took a lot less time to pack clothing, etc., because I didn't have to minimize what we brought: I just took dresser drawers and almost emptied them into tubs. We're in a 3br furnished apartment for five weeks until we close on our house. It's a lovely apartment, but we're in much tighter quarters than this crazy family is used to.

I'll try a Down syndrome post later today.

Friday, October 9, 2009

Day 9 of 31 for 21 - Research, part one

Amy asked: "What are some areas of research that may help Micah and other kids with DS someday?"

I'm glad you asked. There are some great organizations out there. And unfortunately, I'm a bit pressed for time tonight since we are attempting to leave here in the morning to head to a corporate apartment for five weeks before we can move into our new house. This involves disassembling cribs, choosing toys and clothes, etc., so life is a bit insane in our house right now. All that to say, I'll provide the links later, but here are some interesting facts that are fueling some research:
  1. Children with Down syndrome are much MORE likely to get leukemia than a "typical" child and they respond better to treatment.
  2. Individuals with Down syndrome are much LESS likely to get other types of cancer.
  3. Individuals with Down syndrome are much MORE likely to get Alzheimer's, and at an earlier age.

So, because Down syndrome is a triplication of the 21st chromosome, medical researchers are spending time looking at the 21st chromosome and the role it plays in all of the above. This research will help everyone.

But research to better the lives of individuals with Down syndrome is not well-funded (at least with public funding). There are some great organizations out there, though (and I'll get those links, I promise). Separate from that, past and current research has shown that early intervention helps our kids tremendously. That leads me to think I should probably do a whole post on Early Intervention / Birth to Three services and how that has helped Micah and his peers. That's for another day, though, as I return to the basement in search of the winter coats, boots, hats, etc., because we ARE moving to Minnesota and what we take now is all we will have until the rest of our stuff arrives in mid-November.

Thursday, October 8, 2009

Day 8 of 31 for 21 - Thankful Thursday

Sorry, no Down syndrome post today. Very tired. But I wanted to use today's post to say how thankful I am for such supportive family, friends, and prayer warriors from our church. Our family has been through a lot since we moved here less than 3 years ago.

Micah had his last visit with his ophthalmologist in Madison yesterday. We went to say farewell to the staff at the NICU this morning (one of the nurses referred to chubby bubby as "cube baby" LOL). Micah had his last appointment at the feeding clinic in Milwaukee last Friday. I actually cried on my way home because we've spent a crazy amount of time there in Micah's 21 months of life (and a couple of days before that). They know him. They know what he's been through. They've seen the progress he's made. They feel a strong sense of "ownership" of his health and his progress.

What I realized after that is that one of the hardest parts of leaving is that we are leaving everyone who has walked through this entire journey with Micah with us (in person, anyway), from prenatal diagnosis to preterm labor to birth to NICU (here to Milwaukee to here to Milwaukee) to intestinal surgery to heart surgery to feeding tubes to oral aversion to another hospitalization to another surgery to many trips to MKE for tube changes... We're going to a place where no one knows. It takes a long time to build up community in a new place. Don't we all want to feel like we're known?

We're leaving on Saturday. I'm very much looking forward to being in the same city as Mark. And I'm looking forward to beginning the next chapter in our lives... mostly. But we're leaving Mark's parents. We'll be farther from my family too.

But I'm thankful for having the opportunity to be here for almost 3 years. I'm thankful for the dear friends we have made here. I'm thankful for the countless prayers that were offered up by our church family, most of whom had never met us before Micah was born (and some we were never blessed to meet). And I'm thankful that Micah was born here, or we wouldn't have met some of the wonderful families here who also have a child with designer genes.

Wednesday, October 7, 2009

Day 7 of 31 for 21 - Choosing Life

Thanks for asking another question, Paige. Here's her comment on an earlier post: "in utero - it's a dangerous place for a little baby with that diagnosis in this day & age... *what* - if anything - can we (as a society) do to change that? i guess what i'm asking is - how can we encourage parents to take the leap of faith required to choose life?"

Our society is on a slippery slope. The "termination" rate (aka abortion rate) for babies with a prenatal diagnosis of Down syndrome has been estimated at 91-93%. This has been termed "casual eugenics" by some. I think it's a sad sign of our society's priorities when it becomes more socially acceptable to abort a baby rather than put that baby up for adoption. And where will it stop? What if we get to a place of finding out at 15 weeks gestation that a baby will have autism? How "severe" will the autism be? Is that baby going to be aborted? What about advance notice that the child will develop cancer?

Paige, I think the first step is education. There are a lot of doctors out there who are sharing a diagnosis and presenting families with outdated and incorrect information. For example, a neonatologist told me (before Micah was born) that the average life expectancy of an individual with Down syndrome was 30 years. That might have been true 20 years ago when that doctor read a textbook, but it's not true anymore. It's more like 60 now! The difference is due primarily to advances in cardiac surgery, I believe.

The Kennedy-Brownback bill (The Pre- and Postnatally Diagnosed Condition Awareness Act) that was passed in 2008(?) can help. It was designed to improve information and increase referral support for families receiving a prenatal diagnosis. The key to making it work is funding it, though. I'm not sure where that stands right now.

Even though education can help, I'm afraid that the primary problem is that we all want what we want, when we want it. No one *plans* to have a child with a disability. We all have pictures in our minds of what our family is going to look like, maybe not to the last detail, like Nathan going to Michigan State, for example (I really don't care if he goes there or not, but I would definitely care if he said he wanted to go to Michigan... that's a subject for another time). I still struggle with expectations and unfulfilled dreams for Micah. I'm terribly selfish that way. I want Micah to be a statistical outlyer: he could drive, go to college, get married, etc. And as I've mentioned before, I need to continually go back to whether those dreams are for me and my benefit, or whether they're for him. Sorry... off track a bit here.

Back to the question. Another way to help is to let expectant mothers know that there is a long list of families who wish to adopt a baby with Down syndrome. There was a link floating around the Down syndrome community a few weeks ago showing a 3-month-old baby who was up for adoption. There were tons of inquiries about Ryan and he ended up with his forever family fairly quickly because they had a completed home study. I think it's very telling that there are a number of blogs I follow in which the family has a child with Down syndrome and has made the choice to adopt a child with Down syndrome, whether domestically or internationally (I might talk about Reece's Rainbow someday... head to their website for a major tug on your heart strings).

Here's a link to a recent news clip with Dr. Brian Skotko in Massachusetts. And here's the new parent packet put out by NDSS that just gives you some information. It would be great for all expectant parents to receive this when given a prenatal diagnosis. But it's very costly. Most hospitals do have some sort of information packet that they give out to families when a diagnosis is possible or confirmed. But who assembles it? That varies widely. And sometimes there's actually too much information (where do I start? what to read first?).

But maybe the best way to encourage families to choose life is to show them all the benefits that these children provide. And that though life is going to be different than we expected it to be, it will actually be richer because of this child. "Sons are a heritage from the Lord, children a reward from Him." (Psalm 127:3). Please take note: God does not say "perfect sons" or "perfect children" are a reward. Because really... who has perfect children anyway?

Tuesday, October 6, 2009

Bolus feeding!!!

I'm almost hesitant to post this, but I've been doing bolus feeds for Micah since Friday. You might wonder what that means. Well, until very recently, Micah was receiving his feedings continuously for 19 hours/day (through his feeding tube, which was recently changed to a G-tube from a GJ-tube). A bolus feed is more like a meal. For him, that's about five ounces. And on Friday I tried giving him that volume over a very short period of time (15 minutes).

Today, I gave him FIVE bolus feeds so he does not need an overnight drip feed tonight. This is the first night since May '08 that he hasn't received a feeding overnight, except when he's been sick and we've wanted to give him a break. He also ate orally twice today (about 3 ounces each time).

Oh, and at Feeding Clinic in Milwaukee on Friday, he took an ENTIRE jar of baby food (bananas, in case you're curious). Show off!

Micah has a lot of difficulty with any foods that are more liquid than pudding thickness. We'll keep working on it. But even pureed carrots need some rice cereal added in order to thicken it up.

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!

Day 6 of 31 for 21 - Educating Nathan

This is Nathan with his dear friend, Grace. Isn't she beautiful? And I think he's met his match in the "lion attack" game, don't you?

Lisa said: "I was wondering if you could share on how you've educated Nathan about DS and if you have any resources or tips on helping children understand DS."

I mentioned yesterday that this would be a short post. The answer to the question is, "We haven't." Nathan just turned four 10 days ago (oh, yeah... I need to post his birthday stuff!!!). When Micah was born, Nathan was not yet two and a half. There was no need to explain anything to him at that age. We talked to him about Micah's heart and his tummy being hurt. That was the year to explain sickness to Nathan, since Micah spent over 3 months of his first 10 months of life in the hospital.

It's probably time to talk to Nathan about it. But honestly, I've been waiting for him to ask. I figure it's only a matter of time before he realizes that Matthew is younger than Micah but Matthew is progressing faster physically (and eating table food, etc.). Nathan is a pretty curious little guy and does not have an introverted bone in his body, so if he wonders about something, he's going to ask. Is that bad? Anyone else out there with a 4yr old who knows about his/her sibling's diagnosis? How did you start talking about it?

Regarding resources... my first step is usually to visit Woodbine House publishers (specializing in books on disabilities). I've heard that the book "The Best Worst Brother" is good, along with "We'll Paint the Octopus Red." Another resource we plan to plug into in the future is that there are some organizations that focus on siblings of individuals with disabilities. But I think those start around age 6.

Running out of questions from readers. Anything else you wanted to know about Down syndrome but were afraid to ask?

Monday, October 5, 2009

Day 5 of 31 for 21 - Disposition

(This is a photo from April, but I remembered it after the Micah's hand post and thought it was a better shot of what his hand looks like. It also shows off his single transverse palmar crease, another occasional feature of Down syndrome. And the photo also shows how adorable his hair is... do you think it's screaming for a short mohawk?)
Jodi's question: "It seems like most ds kids/people [*see end of post] I meet have a sweet disposition and that they're very open and trusting. Have you noticed that and what do you think is behind that?"

This one is a bit more difficult for me to answer. I'm certain to offend someone in my answer. It's close to being a touchy subject for some in the Down syndrome community. But the way Jodi asked the question doesn't bother me. The annoying phrase is, "Oh, they're all so loving/happy/sweet/etc." which is quite a generalization. Jodi's personal experience is what she's asking about. I'm not sure I can answer it well, though. Because it will be my personal opinion, not based on medical facts (which I'm much better at!).

So... in my opinion... (and it is just that, folks... an opinion), I think it's because many individuals with Down syndrome do not feel confined by "social norms" as much as the general population. They know what love means and they express it when they feel like it. There are different types of intelligence. I wish I had time to research that right now, but alas... I'm tired. I know I read some sort of research lately on this (any of my fellow bloggers remember who posted that?).

Honestly, Jodi, I haven't spent much time around teens or adults with Down syndrome, so I am not sure how to answer your question well. But my opinion about your experience as it relates to individuals with Down syndrome being trusting... I think that's because it's YOU that they're trusting. I've heard that many individuals with Down syndrome are perceptive, so they might just realize you're a person worth trusting. :-)

* Educational opportunity - I'd like to lovingly request "people-first language." I might do a post on that later this month. But since it's here, I thought I'd add it now. It's a bit more cumbersome to say, but the prefered language is "individual/kid/baby with Down syndrome" rather than "Down syndrome individual/kid/baby." Think of it this way... you wouldn't refer to someone's child as their "leukemia kid." I think the same goes for autism, though I don't know if the autism community has as big of a push for people-first language as the Down syndrome community does.

Stay tuned for tomorrow's post on educating Nathan about Down syndrome (it will be a short post!).
Please keep the questions coming!

Sunday, October 4, 2009

Day 4 of 31 for 21 - Wedding video

No... not OUR wedding video. Shout out to my Nashville friends who will recognize the venue: Scarritt-Bennett Chapel. Here's a video of a couple, both of whom have Down syndrome, and were recently married. They met when Josh was 2 and Bernadette was 5. Major tears flowing as I ponder the possibility of this type of day ever happening for my sweet Micah.

(I'll field another question tomorrow. Keep them coming!)

Saturday, October 3, 2009

Day 3 of 31 for 21 - Teeth and Hypotonia

Amy asked the following:

"I have a friend here whose daughter has DS, and she ended up with a couple of teeth (bottom middle two) that didn't develop and come in. Does Micah have any tooth issues related to DS?Also, can you tell us about how he's really flexible-I mean limber?"

Yes, Micah has some funny teeth things. First, he only had 2 teeth until he was 19months old (he didn't have any until... hm... wish I had titled a blog posting "teeth"... I'll have to get back to you on when he got his first tooth). He does *almost* have 2 more. And oddly, the two that are coming in are his first upper molars. I had thought the were eye teeth (picture dracula with just 2 bottom teeth and upper fangs). But there's more tooth coming through the gum now so apparently they're molars. I had heard that most kids with Down syndrome (Ds) get their teeth later than average and that they sometimes come in weird order. That has been the case for Micah.

Yes, Micah is insanely flexible. It's due to hypotonia (low muscle tone), and it's very common with Ds. I've actually seen photos of some kids who are pancaked over and sleeping (think about sitting with your legs out and slightly parted, stretching out, putting your belly on the floor, and falling asleep). Weird, huh? Micah has never fallen asleep that way. But he will sometimes flop over like that and pull his legs all the way around so that he's lying on his tummy. And vice versa (getting up to sitting from his stomach, he will swing his legs around... it's definitely "cheating" and we try to stop him when he does that). Hypotonia is actually one of the first indicators of Ds in an infant when there wasn't a prenatal diagnosis (if I think about it later this month, I'll post a list of other indicators). Babies with Ds sometimes come out "floppy" and don't make fists and curl up in a ball like a typical newborn. Most babies curl up their bodies and bend their legs to get their toes in their mouths. Not Micah. He grabs his foot and pulls it straight up to his face without bending his leg.

Hypotonia can also cause feeding issues, speech delays, and digestive difficulties. Lucky Micah... he gets all of those. After we move to MN, Micah will need to get fitted for orthotics due to his weak ankle muscles. I'm hoping they will help him feel more comfortable bearing his weight while standing. As a side note, low muscle tone does not equate with muscle weakness: the muscles can be made stronger, but they will most likely always have low tone.

Sorry I don't have a good picture to post of Micah's flexibility. I'll try to find one later.

Thanks for asking, Amy. I'll be addressing Jodi's question tomorrow. Anyone else care to ask something?

Friday, October 2, 2009

Micah's hand

Yay! My first Micah question. Today is Day 2 of the 31 for 21 challenge. Today's post is a response to Paige's question about Micah's hand: "i've wondered about Micah's hand. Does he have a unique hand? it's hard to see from the pics - & if so, is it a result of ds?"
Yes, Micah does have a unique left hand. It's a result of amniotic band syndrome (ABS) and has nothing to do with Down syndrome. Basically, the theory is that his fingers got "caught" in the amniotic sac while it was forming. There are a few different theories about how this happens, but no one knows for certain. Depending on which appendage gets caught, it can cause a miscarriage. Fortunately for Micah, it was just his fingers. All four of his fingers end before the first joint. His thumb is unaffected.

So... rewinding to the day Micah was born... We didn't know ahead of time about his hand. I had countless ultrasounds. Micah always appeared to have his hands in the boxing position. Now we know it wasn't due to his left hand being clenched. Anyway, Micah was born via c-section (thankfully... long story for another time perhaps). I only briefly saw him bundled in a blanket before he was taken to the NICU. Because I had an emergency c-section, I had a spinal (compared to a standard epidural) and it takes a bit longer to be able to move afterwards so I wasn't allowed to go see Micah in the NICU. The NICU transport nurse had him packed for transport to Milwaukee and they stopped by my room on the way out (they wouldn't let me take him out because he was bundled for transport. I still hadn't held him, and wouldn't have the opportunity to do so for a few days until I was released from the hospital and able to go to Milwaukee). This was the first time I saw his hand and I started to cry. I was so sad that there was yet another medical issue for this little baby to overcome. It just didn't seem fair.

Micah has been seeing a plastic surgeon who specializes in congenital hand deformities. His last x-ray (I think that was in June?) showed that there is not enough soft tissue above the bone in his pointer finger to do a bone graft (from his toe... crazy, huh?), but it could be done on his middle and ring fingers. But the best way to lengthen his fingers is going to be a surgical procedure when he is about 4 years old. They would insert pins that would have screws on the outside that you would turn every day. Yuck. We have plenty of time to make that decision so it's on the back back back burner. If we did proceed with something like this, it would definitely be for functional reasons, not for appearance. It would not give him joints in his fingers or make them "normal" length. But it might help him to do more things. Honestly, this weighs on me a bit because we do hope that Micah is able to work and live independently someday, and manual labor might end up being his ticket to that life.

Meanwhile, Micah uses his hand very well. His therapists often note that he does not favor his right hand over his left very often. And that makes sense because he doesn't know any different. It's not like he knew what it was like to have long fingers on his left hand and then lost the digits. It's amazing how his body compensates.

I've grown to love that sweet little left hand of Micah's. I think it's adorable. Thanks for asking, Paige.

Anyone else have a question about Down syndrome or Micah?

Thursday, October 1, 2009

It's 31 for 21 time!!!

Get It Down; 31 for 21

Welcome to Down Syndrome Awareness Month. In an attempt to increase awareness, I'm going to try to blog every day this month (a task that might be beyond reach given our upcoming move to MN, but I'll try). I may not blog about DS every day, but I'll try to put a post out there.

Let's start with a request for questions. Is there anything you've wondered about Down syndrome (or Micah specifically) but were afraid to ask? I'll try to get to questions throughout the month. You can post questions anonymously. As long as it's not completely disrespectful or something, I'll answer.

I tried 31 for 21 last October too. Given the circumstances, I was pretty successful (I posted 24 of 31 days). Micah was in the hospital the first 10 days of the month (after being admitted on 9/28/08 for what was eventually determined to be a GI virus). I'm thrilled that it's been almost a full year since Micah had an overnight in the hospital (he had his little boy surgery in December and didn't have to stay!).

Ooo, one more question for y'all to contribute to the postings... Are you giving your kids (DS or not) the seasonal flu vaccine and/or the H1N1 vaccine?