This and That

1.

Micah’s hearing is much improved.  Thank you all for the prayers!  It appears that the fluid behind his ear drums was the culprit, and now that it has started to drain, he can hear us again.  We will have his hearing officially tested just to make sure everything is o.k., but I can’t tell you how relieved I am that it doesn’t look like he will have permanent hearing loss.  Thank You, Lord!!

2.

I lost my cell phone about a week ago . . . so if you’ve tried to call and I haven’t returned your call, I’m sorry!  We have new cell phones now – same numbers, but AT&T instead of Verizon.  (Yes, Aaron finally got his iphone, and loves it!)  However, I lost all my contact numbers when I lost the phone!  So, I’m asking a favor.  If you are someone who I call, (or if you would like me to call you!),  could you please either call me with your phone number or send me a quick email?  I would greatly appreciate it.

3.

I felt our new baby move for the first time last night!  Such a tiny little flutter, but definitely our baby moving.

4.

If you are in the Yakima area and pick up a copy of  Playdate magazine, you might see a familiar face.  Matthew won the “Gotcha” photo contest for the latest issue!  Click here to see him and other Photo contest winners, including our Godson, Jackson Snow, who was the winner for the last issue  You are such a cutie, Matthew!!

The Winning Photo

Prayers for Micah

Micah is having a lot of trouble hearing.  He can’t hear a normal speaking voice, and has even more trouble if there is background noise.  At first, I was very frustrated with him because I thought he was ignoring me every time I talked to him, but it became clear that he truly isn’t hearing.

His ears are not obviously infected, but it does look like there is fluid behind his ear drums.  So, we’re treating him as if he has ear infections, and hoping his hearing will return to normal if we can clear up the fluid.

However, I can’t help but worry about my little guy.  I have two uncles and a cousin who all suffered permanent hearing loss after having a viral illness with a fever.  Please keep him in your prayers.  He’s my healthy guy, and this makes me realize how much I count on and need him to stay that way.

Aaron is still pretty sick, but thankfully the pneumonia and influenza tests were all negative.  His fevers have let up some, but he has to work another 30-hour shift today, so say a prayer for him, too.  He only has one more week of this awful rotation, then he’ll be able to get some rest.

Thanks for the prayers.

World Down Syndrome Day

Today is World Down Syndrome Day.  The date, 3/21, represents 3 copies of the 21st chromosome.

It comes at a great time this year, in light of the President’s recent faux pas.  (By the way, the best response to this that I have seen is from Sarah, an expert bowler and an eloquent blogger, who just happens to have 3 copies of her 21st chromosome.)

Down syndrome was named after Dr. John Langdon Down, who first described the condition.  The correct terminology is just that:  Down syndrome.  Not Down’s, or Down’s Syndrome, because Dr. Down did not have the condition (so we do not use the possessive form,) and “syndrome” is not capitalized because it is not a proper noun.  You may also see Down syndrome abbreviated online as DS or Ds.

Down syndrome is the most common chromosomal anomaly, occurring in approximately 1 in 733 births in the US.  However, as common as it is, there are less and less babies being born with the condition, because about 92-93% of mothers who receive a prenatal diagnosis of Ds choose to abort the baby.  This comes to about 65,000+ babies aborted each year due to a prenatal diagnosis.  I can’t tell you how much it saddens me that so many lives are lost.  I am sad not only for the babies, but also for the parents who are missing out on having an amazing child.  And, I am sad for Matthew, who will have less friends who are like him.  With fewer people having the condition, others will know less about it, there will be fewer resources for him and less research done about Ds.

When speaking about someone with Down syndrome (or really any other
disability), parents and individuals with the condition prefer it if you put the person first.  For example, “Matthew has Down syndrome.”  We would never say, “Our Down syndrome son,” because that lets the condition define him.  By now, you should know that Down syndrome definitely does not define our son, nor does it define any other person who has an extra 21st chromosome.  Each individual is just that . . . an individual, which is why we also avoid making “blanket” statements about people with Down syndrome.  Statements such as “They are always so happy,” are not only untrue, but offensive because they lump everyone with the condition into one category.  To be safe, just avoid statements that start with “They are . . . “.  I’ve come to really dislike the royal “they.”  Are we too picky?  Too sensitive?  I don’t think so.  As parents, we have to protect and stand up for our children.  Words are powerful, so we need to be careful how we use them.

By the way, there are over 200 families on a waiting list, wanting to adopt a child with Down syndrome.  If you think these children are not wanted, you are very, very wrong.  There are families waiting to welcome and love a little one with an extra chromosome.

We love you, Matthew, and wouldn’t trade you for the world!

A really nasty virus

. . . and not the computer kind.

My “mild cold” grew up into a big, nasty illness that has knocked out our entire family.  I had the worst sore throat and cough I can remember, and lost many night’s sleep either taking care of sick kids or coughing too much to sleep.  Matthew ended up with another ear infection, but seems to be feeling much better now thanks to the antibiotics.  The kids are finally starting to sleep better at night, and I feel like I’m starting to “turn the corner,” too.

Aaron and Micah were hit hardest by this, though.  Micah felt so awful that he actually asked to go take naps several times.  He looked more miserable than I’ve ever seen him. 

Aaron has missed 3 days of work, but still had to work his 30-hour shift on Wednesday.  Is it any wonder that he is the only one who is feeling worse instead of better?  He went to the doctor today (. . . do you know how difficult it is to get a doctor to go to the doctor??), and got a chest X-ray to look for pneumonia (it was clear), and a test for Influenza B.  We’ll wait on those results, but meanwhile we’re grateful he has the weekend off.  At least we all have a couple more days to rest and try to recover.

We’re all sick-and-tired of being sick and tired!

The Best News

Dear Matthew,

One year ago today was a very big day for all of us.  It was the day we found out that you were going to live.  It was quite a shock, since we had been told with such certainty that you would die very young.  And, we had a lot to prepare for, with scheduling your open-heart surgery.  I felt “behind,” because up until that point, we hadn’t really thought much about the fact that you had Down syndrome.  Now, I needed to research and learn as much as I could in order to be the best mommy I could be for you.  But, at the end of the day, your daddy and I couldn’t stop smiling and cuddling you.  It was the best news a parent could ever receive – Your son is going to LIVE!

We just happened to have family portraits scheduled for that afternoon.  When I scheduled them, I was thinking, we need to get family pictures while we still have Matthew, and it made sense to combine a trip to Holly Perona’s studio* with your cardiology appointment in Spokane.  Now, we have wonderful family pictures to commemorate the incredible day we learned you were going to live.

It’s hard to believe it was only a year ago . . . so much has happened since then, and you have come so far.  You are such a different boy than the fragile and weak baby we had a year ago.  But, you still have the most beautiful blue eyes I’ve ever seen, and you still melt my heart with your smile.

Here you are one year ago:

Only a few days later, you got really sick.  I actually thought that we might lose you, but we hopped on a life-flight to Spokane, and you had emergency bowel surgery.  There were so many people who loved you and who had been praying for you, that Uncle Ken helped set up this blog to keep them updated on your recovery and your progress.  The very first post on the blog was from a year ago today:

March 13th, 2008:

We took Matthew back to the pediatric cardiologists for a follow-up evaluation of his heart. He had been doing so well – better than anyone expected him to do – we weren’t sure what to expect, but we needed to know what was going on with his little heart. His echocardiogram showed that miraculous healing has taken place in his heart! His aorta (the blood vessel that pumps blood to the entire body), which was only 2mm in diameter at birth, is now normal size. They saw no narrowing or restriction of flow whatsoever. Also, his left ventricle (the main pumping chamber of the heart) has grown to normal size. The ventricle was so small when he was born, doctors weren’t even sure it would be a ‘functional chamber.’ With these two major changes, Matthew is now a great candidate to have heart surgery to repair the other problems. It will be a big, complicated surgery, but the doctor is very confident that Matthew will do well and it will FIX his heart!

It is the best news we’ve ever heard – our son, who was dying, is now going to LIVE! His heart will be FIXED after the surgery! They don’t even expect him to need much on-going care afterwards. I will fill you in on the details of the surgery later, but the doctors have NO good explanation for these incredible changes in his heart. It truly is a miracle, and we want to thank everyone who has been praying for our family. We give all the Glory to God, and we’re excited to see what God has in store for Matthew!

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*Holly Perona is the talented, kind, and incredibly generous photographer who took pictures of Matthew in the NICU, then gave us this second family portrait session.  She literally gave us all of the portraits, not charging us a cent for any of her work.  We can’t thank her enough for all she’s done for us!

Holly is a member of the American Child Photographers Charity Guild.  If you, or anyone you know, has a child with an uncertain future, you can visit their website to find a photographer near you who will capture priceless images of your beautiful child at no cost you you.

Snow House Pictures

Mommy’s been busy lately, so I thought I would share some pictures from our last trip to Bubbi and Papa’s Snow House.

It was a beautiful day to play in the snow.

I skied fast-fast-fast, and even rode up on the Big Chair!

It was a special day, St. Valentine's Day, so Bubbi made fondu for dessert!

Yummy!

I like to dip my fruit in chocolate! I like Fun-DOOO!

You know, I really don't know how this day could have been any better.

I sure hope we can go back soon!

-Micah

Prayers today

I received an email from Lisa a couple days ago.  Her little girl was diagnosed with Down syndrome and an AV canal defect in January, and her labor is being induced today.  Please keep them in your prayers today, as this little one is born, and pray that their journey to and through heart surgery is as smooth as possible.  You can check in with them (and leave notes of well-wishes/congratulations) on her blog:  Grace Upon Grace

You know how strongly we believe in the power of prayer, and you have all been such incredible prayer-warriors.  Let’s wrap this family up in grace today!

What about Trisomy 18, Trisomy 13, or other terminal diagnoses?

Although this blog speaks mostly to Trisomy 21, or Down syndrome, I do have a lot of empathy for parents who receive a diagnosis of Trisomy 18, Trisomy 13, or other terminal conditions.

When we first received Matthew’s diagnosis, the severity of his heart defects gave him a “Zero-percent chance of survival.”  I will never forget the weight with which those words hit me, nor the feelings of absolute devastation and hopelessness that followed.  Is there any worse news in the world than, “Your child is surely going to die?”  I don’t think so.

Parents now have some tough choices to make when they receive a prenatal diagnosis like this.  And, they have to make these choices when they are more emotionally distraught than they have ever been.  I know first-hand how tempting it sounds to just “end it all,” to move on with your life and forget about the whole nightmare.

When we were facing the certain death of our second-born son, we found this video to be encouraging.  Aaron and I watched it together, and afterwards he looked at me, wiping away his tears, and said, “That’s us.  That’s exactly how I feel about Matthew.  We are just going to love him, treasure him, and celebrate him for however long we have with him.”

If you haven’t seen “99 Balloons,” please take the time to watch it:

One of my favorite quotes from this video is when Eliot’s dad says,

“An underdeveloped lung, a heart with a hole in it, and DNA that placed faulty information into each and every cell of your body could not stop God from revealing Himself through a child who never uttered a word.”

I can honestly say that, even if Matthew had only lived a short time . . . even if was just a few hours like the doctors originally predicted . . . He still would have been worth it.  It would have been worth the long months of pregnancy, the heartache, the tears, and all the worry.  There is nothing like being able to see your baby’s sweet face, hold him in your arms, and tell him you love him.  And, you never know how that baby will touch and change you.

I read a comment on another blog recently by a mother who had just received a prenatal diagnosis of Trisomy 18, and said she was facing some “tough choices.”  My heart just breaks for babies who are aborted due to prenatal diagnosis, and their parents.  My mom and dad desperately wanted to contact this mother to tell her, “If you don’t think you can handle caring for him, we will take him and care for him.  Just, please don’t abort him.”

I strongly believe that every life is worth living, and every baby deserves a chance.  You never know how that tiny little  life will change yours.  It should really be up to God, not us, when and how a life ends.  And, if you don’t think you can handle a terminal diagnosis or a dying baby, my loving parents have offered their hearts and their home.  Please know that, no matter what, our prayers are with you.

Part of our Miracle that I Neglected to Share

It seems like I have come down with a mild cold.

Why is this news blog-worthy?  Well, you see . . . I have not been sick – not even a little bit – for over 2 years.  I haven’t even had the inkling of a cold since we received Matthew’s initial diagnosis when I was 22 weeks pregnant (See Chapter 2 of our story for more details on that).

With every germ that Aaron brings home from work, and through every cold and sniffle and cough that Aaron and both boys have had, I have escaped them all.  I have been sneezed on, coughed on, used as a human kleenex, cleaned up all the other disgusting things that come with mothering sick kids . . . but I have not gotten sick myself.  And, yes, I still kiss my kids and my husband, even when they’re sick.  (o.k., except for the time I wouldn’t let Aaron come home for 3 weeks because he was sick and Matthew was on strict germ precautions prior to heart surgery. . . but that was for Matthew’s safety, not mine!  That story is in the April 2008 archives)

I have been extremely thankful for this divine immunity, but I knew it could not last forever.  God knew that I needed every ounce of strength and health to take care of my family, so He protected me from sickness for the past 2 years.  It is yet another miracle, and I don’t think I’ve shared it on the blog yet.  God has been so great and so generous, giving us things we didn’t even dare to or know to ask for.

Still, this cold is incredibly mild, and I know it could be a lot worse.  I think God is still protecting me – just reminding me, a little bit, to be grateful for all our incredible miracles.

Our Little Spitter

For the past week or so, Matthew has been spitting at meal time.  Not just fun, “I’m making noise” spitting, but real problematic spewing-food-and-milk-all-over-the-place spitting.

I knew we had a problem when I firmly told him, “no,” and was rewarded by a face-full of milk and that defiant look in his eye that parents know all too well.  (This is the first time I had seen it coming from Matthew, though!)  Aaron and I have talked a lot about “no special treatment” for Matthew when it comes to discipline – we agreed to treat him just like we treated Micah, or would treat any other child, with age-appropriate discipline when the time came.  So, here we go.  I again firmly said and signed, “no” and put my hand firmly over his mouth.  Next bite, he looks right at me and spits.  “No, Matthew,” and I gently slapped his lips (not enough to hurt, but enough that he didn’t like it.  I hate to even use the word “slap” – it’s really more of a “bap,” as Micah would say.)  Then, I decided meal time was over.

The next meal, and the next, and the next . . . . all went about the same way.  Matthew spitting about every-other bite or drink, and me repeating the “no” and the light slap.  For a kid who has picked up so quickly on other things, he just didn’t seem to be getting this . . . or else he is just stubborn.

 The next meal, I noticed he would spit every bite except his favorite item on his plate (that night, mashed potatoes.)  Growing weary of the battle, I decided that the next meal would be finger-food that he could choose and feed himself rather than me spoon-feeding him.  Maybe he was expressing (although inappropriately) his likes and dislikes.  The next meal, I simply placed finger food on his tray, and let him choose and feed himself.  Guess what?  No spitting.  He ate mostly broccoli for that meal, leaving the other choices behind, but at least it’s good for him.  The next dinner, I repeated this, and he ate mostly asparagus, leaving the rice and meat behind.  When he was getting full, he started throwing food and spitting.  When I asked him, “all done?”  He grabbed my hands and “helped” me sign “all done.” 

O.k., child, I’m starting to get the message.  Be patient with Mommy – sometimes I’m a slow learner.

Since then, Matthew will still spit occasionally – especially when we’re spoon-feeding him something, and especially when it’s not his favorite or he’s starting to get full.  We still say “no,” and lightly slap his lips, but I’m beginning to see that most of the time, he is trying to tell me something.  And, since I’ve realized that, the spitting problem has not been quite so bad.  We’re working extra hard to encourage signing, hoping that giving him more appropriate communication tools will help

But meanwhile . . . anybody have any other suggestions??

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By the way . . . yes, I did say “broccoli” and “asparagus.”  My entire family loves asparagus, but it wasn’t always this way.  I lightly toss it with a little olive oil and Johnny’s seasoning salt, then grill it on our barbeque.  You should haves seen Micah jump up and down saying, “Yeah!  We’re having asparagus for dinner!”  And, I could hardly believe myself using it as a bribe . . . “If you take 2 more bites of meat, Micah, you can have another asparagus!”  Aaron wouldn’t touch the stuff until he tried it cooked this way . . . now he can’t get enough!