World Down Syndrome Day

March 21 (3-21) has become a special day for us.  Today we celebrate World Down Syndrome Day.  We celebrate Daniel and so many others who carry three copies of the 21st chromosome.

 

I remember learning about World Down Syndrome Day last year, wondering if our boy would be born with Down syndrome.  Wondering what life would be like for us if he were to be born with an extra chromosome.

It has certainly been an eventful year!  Our eyes have been opened to a whole new world of love, determination, triumph, and celebration.  I say this all the time, but it’s worth repeating: We are truly blessed!

My hope is for everyone to not just accept, but LOVE Daniel and all those who sport an extra chromosome.  I pray that the 90% of women who choose to terminate their pregnancies upon receiving a Down syndrome diagnosis will know that their child would not be suffering, nor would they be a burden.  Daniel alone is proof of that.  He has brought more joy to our family than we ever thought possible.

We love you, sweet sweet Daniel. From your wild-man hair, to your sparkling blue, almond-shaped eyes, to your bent pinkies, pudgy legs and sandal-gap toes…there’s an awful lot to love and be thankful for.

Happy World Down Syndrome Day!

P.S. – there’s a blog hop going on.  Find more at My Stubborn Miss

The Mother of All Weeks (and it’s only Wednesday)

I think I’ve had enough of this week.  Can it be over now?  Please??

Daniel and I met with the audiologist on Monday to follow up on the ABR from last month.  (The ABR showed some hearing loss in both ears.)  Daniel was an angel and slept through the entire appointment, even while having probes stuck in his ears and manipulated around.  And that was after he’d already had at least two (but maybe three) naps!

What I heard was NOT what I was hoping for.  Daniel has mild hearing loss in both ears.  It’s permanent – not related at all to gunk in his middle ear.  His tubes are not working properly, as in…there’s fluid behind his eardrums.  Again.  So instead of a mild hearing loss, he has more like a moderate-severe loss in both ears.  Ugh.  (Let me just insert my petty and irrelevant complaint about all the money we spent to have those suckers put in his ears!!!)  And, the big kicker: he needs hearing aids, but his ear canals are too small for them.  Really.

I left the appointment practically in tears (which came when I started relaying all the information to Jared).  Daniel continued on with his nap, blissfully unaware of the sadness his mother was feeling about how much he is missing out on.  We have to start ear drops again, and go see the ENT again (shall we arrange for a standing appointment?), and some other stuff.

Speaking of drops…Daniel’s eyes have been gunky again.  Again?!?  They were good for about two weeks, and have now been gunky (though not as bad as before) for about 10 days.  Groan, moan, complain some more.  (Here’s another petty and irrelevant complaint about all the money we spent to get those suckers open!)  When I talked to the doctor (not a nurse or a tech…the doctor!), I heard what I never thought I’d hear (or ever wanted to hear) out of a doctor’s mouth: “Oh No!”  No, it’s not life-threatening, nor is it even eye-threatening.  But, in the words of the doctor, “Well, we may just have to go BACK in and put in stents.”  For now, we have to start eye drops again, and go see the ophthalmologist…again.

(Wash, rinse, repeat…right?)

And now for the new chapter in the saga that is this week.  I have had some concerns that Daniel may be having sleep apnea.  He is often a very restless sleeper, his breathing (especially at night) is noisy, I hear gasps and pauses, and he sleeps A LOT.  Remember the naps from up above?  Three or four (or more) naps is his status quo for daytime, along with 10-12 hours of sleep at night.  So yesterday Mama called the doctor and the doctor said…let’s check his oxygen saturation overnight for a week.  But after seeing his sats drop to 86 in the first 10 minutes of sleep, I thought I should call the doctor this morning, just to let him know.  Well, that put an end to the pulse-ox monitor and now Daniel is on oxygen at night.  What is our diagnosis?  Your guess is as good as mine!  I thought he’d want to get a sleep study scheduled, or have us come in to rule out anything heart-lung related.  I shall be calling in the morning.  I hate being THAT mom.

That’s it folks.  The week that I would like to end.

More

This is so much fun!  (I apologize for the length – I was too lazy to edit.)

Happy {Half} Heart Day!

Dear Daniel,

Six months ago, I handed you to the surgeons who would repair your heart.  I’ve never had to do anything so difficult before.  While we were waiting for them to come for you, I actually told Dad that I wanted to take you and run as fast as my legs could go!  As much as I had wanted to get to the day when your heart was repaired, I dreaded even the thought of what you would go through.  I worried that something may go wrong and I would never again get to see your smile or snuggle you close.  But deep down, I knew that what ever happened, you would be safe.  And that gave me the courage to let go when it was time.

{Scar free and ready to go.}

You fought so hard and worked your way back to the happy, smiling boy we love so much.

You (and the rest of us) persevered through medicine that gave you diarrhea, exhaustion just from drinking a bottle, and more than 2 months of a dang tube in your nose! And now you can roll, you can sit, you eat {almost} as much as a teenage boy, you laugh, you STAND, you army crawl, you babble, and you charm everyone you meet.

 

You’ve come a long way little Buddy!

I will forever be thankful for the amazing surgeons who saved your life.  And I will be eternally grateful to Heavenly Father for letting me be your mom. You are a wonderful blessing to me and I can’t imagine life without you…

 

…because you’ve got heart, and you do my heart good!

Love, Mom

Sunday Smiles

This is what three clicks of the camera brought me today.  Ok…I took more than three pictures, but these three were *almost* in succession.  How can you resist that face?  Even the “Aw, c’mon mom.  This is ridiculous!” face is adorable!

Daniel has a big milestone coming up in a couple of days: 6 months post open heart surgery.  6 MONTHS!!  More on that later.

And now for something completely different…

Caleb is my silly boy, and he makes me laugh A LOT (which is good, ‘cause something needs to break up the monotony of tax season).  The boy is N.U.T.S!!  He has no fear, he loves to fight (usually in a playful way), he has the most hilarious sense of humor, and he often uses big words that he doesn’t understand (but he uses them correctly, which makes it even more funny).  He loves to say, “Grandma (or mom, or some other grown-up) you do not make any sense!”  Oh, and he loves to vacuum.  Go figure!

Yesterday he took a bath after getting his hair cut.  When he was done, he curled up under his towel on the bathroom floor to dry off.  And then he fell asleep.  In a heap, on the floor.  But I didn’t take a picture because it would have just looked like a heap of a towel on the floor since he was completely underneath (which is probably good since he had no clothes on).

He came out this morning, all dressed for church, and this is what he looked like…

…and he came to me in the kitchen and said (in his most serious voice), “Mom, do I look cool?”  Stifling my giggles, I said, “Oh yeah, buddy.  You look TOTALLY cool.”  And he was patient enough to let me get my camera and take a picture. 

This one is for my mom, who wants a picture of my new hair.

 

Hehehe!!  Still got it in me, huh?!?

10 Months Old

I know…this post is like 2 weeks overdue.  But Daniel will be 10 months old for another 2 weeks, so I figure it still counts!

Look how he’s grown!!  (And I am dumbfounded that he will be one in six short weeks…yikes!!  How did that happen?!?!)

I love this most recent picture.  It really shows the love affair Daniel has with his hands. If you’ve never witnessed it, you’re really missing out!  He loves to watch them, fling them about, and suck on them, not to mention use them to touch, grab, pull and eat everything he can get them on.

(Rachel, Emily and Caleb are playing in R/C’s room right now and Emily is lecturing Caleb in their pretend game of ice cream shop.  Seriously?)

Daniel also loves to stand.  He would do it all day long if his little legs could take it.  He was sitting in his bassinet the other day and he PULLED TO STAND all by himself!!  (Yes, he’s STILL in a bassinet for sleeping.  He sleeps through the night and hasn’t been pulling up on it until just the other day.  And Jared was right there with him.  He’s safe.  I promise.)

Look, Ma…no hands!

He can do this for a few seconds before he chickens out and crumples to the floor.  Progress, progress!  (And that little dimple in his right cheek is about as cute as it gets.  Just sayin’…)

He now has two teeth, with two more close behind.  They are pretty sharp, so watch out if you dare to let him get ahold of your finger(s)!!

And just because I love this one…(sorry it’s blurry, but it’s just so cute)…

I think he has a pretty great story to tell.

Assessment Days

Today was an assessment day for Daniel.  I HATE ASSESSMENT DAYS!!  Hate them!  I beam about my boy all week long, and then feel like I get sucker punched when it’s assessment time.  It is so disheartening to answer “no” to so many “Does/Can your child (fill in the blank)?” questions.

He is 10 months old, and he doesn’t pull himself up to things.  But why doesn’t it count that he is trying harder than I’ve ever seen a baby try?

He is 10 months old, and he doesn’t play social games like peek-a-boo and patty cake.  But why doesn’t it count that he can engage a stranger with just the sight of his big, beautiful, bright blue eyes?

He is 10 months old, and he doesn’t say any approximations of words.  But why doesn’t it count that his smile lights up a room, his giggle is intoxicating, and his lion’s roar brings everyone running?

Daniel sits like a rock star, is commando crawling almost as well as a 19-year-old kid in boot camp, his smiles melt my heart, and he is the most loveable, pleasant baby.  He works harder than any baby I’ve had.  AND…he’s been through more in his short 10 months than many people go through in a lifetime!!  But that’s not on the assessments.  I’m not in denial - I know he’s going to have delays.  But already – at 10 months old – he’s being labeled.  And I hate that.  Why must we use so many labels?  Why do we package up such a complex and unique individual into a one- or two-word statement?  Society-placed limitations is all they are.

Life should be more about celebrating where we’re at right now and how far we’ve come to get here.  It should be about individual strengths and abilities.  It should be about effort and heart, growth and triumph.  I’m so proud proud of my boy, and for how far he has come in his short 10 months.  And there is no assessment on Earth that will ever measure the joy he brings to me every single minute.

The Days of our Lives

We’ve had a pretty eventful month, considering that it’s tax season and I try reeeallly hard to not do much when it is!  Maybe life is trying to tell me to suck it up and get over it?!?

Daniel had his little surgery last Friday.  Though, when he’s under anesthesia for 90 minutes, it doesn’t feel “little.”  Thankfully everything went well and he is recovering nicely. 

There was so much negative pressure behind both of his ear drums (due to the “glue” that was in there), that the first bone in the middle ear was in a horizontal position in both ears.  For those who are not familiar with the workings of the middle ear, the first bone – the Maleus or “hammer” - is supposed to be in a nearly vertical position.  The pressure was sucking that poor little bone – along with the eardrum – way into his middle ear.  The results of the ABR were good.  His auditory nerve is functioning beautifully.  He does have some residual hearing loss, however, and we will need to follow up with the audiologist to get more detail on that.  And is eyes are beautifully non-goopy!  It is so nice to actually see his eyes first thing in the morning!

We had a fun evening with our local Down syndrome group the evening of Daniel’s surgery.  We went bowling – which is always “fun” with small kids who can hardly move the ball but refuse any and all help.  After we had been there for around 30 minutes, the lights turned black and we went Cosmic Bowling.  The kids had a great time with that, and they especially loved my jeans with their white stitching and jewels on the back pockets.

For the most part, the weather has been so springy this winter, which has been wonderful.  The kids have been out to play in our snowless yard several times.  Caleb was brought in, completely against his will, on Friday (man, Friday was an eventful day for us!) because he was eating the dirt.  I asked him why he was eating the dirt, and he whimpered, “Because I was hungry.”  Uh huh.  The twelve dozen snacks plus meals he has in a day just weren’t cuttin’ it for him.

 

Grandma L. came to visit for Prsident’s Day.  She gave us a fun, much-needed break from the everyday stuff we always do.  And what’s a visit without trying to get a few pictures of (almost) everyone?!?!  This was probably the best of several.  Can you see all their personalities?

Funny faces!!

Oh, and we can’t forget about the fun day on Tuesday.  I was working on homework with Emily, and Rachel was attempting to use the bathroom when she yelled, “Hey, who turned out the light??”  I immediately accused Caleb (hey, it’s just this kid’s M.O.), and he said, “I didn’t do it!”  Oh.  Turns out the power went out.  No big deal.  We continued working on homework and trying to get things done.  We still had no power at 4:30, so I told the kids if it wasn’t on by 5:00, we’d go get pizza and they’d be coming to Mutual with me.  Jared WAS going to come home early, but no sense in him doing that if there is no power.  So at the appointed time, and still powerless, we headed out for pizza.  As we drove up our street, it became apparent that the other houses all had power.  Odd.  We stopped back after dinner and, of course, the power was still out.  I gathered up what I needed for Mutual (in my mostly dark room) and then decided I’d call the power company.  Their automated system said they were aware of the outage and that crews were there working on it.  They expected it to be back by 8:00 p.m.  We still had time to kill before Mutual, so we went and got ice cream at McDonald’s.  We drove back up our street on the way to Mutual, and I could tell that the power outage was only 3 houses, ours included.  Seriously, of all the times, it has to choose a Tuesday!!

And lastly, the physical therapist told me to get Daniel a pair of lace-up, hard soled shoes.  I wondered if there were going to be any SMALL enough to fit his feet!  These are a size 1, and this picture really does no justice to just how tiny they are!

Finally…an update!

I am so behind.  Five kids, tax season, Young Women, and just life in general are kicking my fanny!!  I am stealing a few minutes (not sure from where/who) to get an update posted.  So here goes!

As promised – a video of Daniel’s commando/army crawling.  It’s quite unique because he doesn’t use his right arm as much.  But it gets him where he wants to go!

 

Here are a few fun pictures.  Rachel had a fieldtrip to the fire station last week and got to bring home a couple of hats.  Lots of dress-up fun!

We had to do our Valentine celebration on Monday since I had Young Women on Tuesday.  AND, I got to bring the kids – all five of them – with me because we were doing a babysitting service.  (My kids were about 1/3 of all the kids there!)  We didn’t do anything too spectacular on Monday – just homemade pizza for dinner (not even heart-shaped), and a few games with lots of candy for FHE.

Josh had to make a box for his Valentines at school, so we decided a giant Lego would be just about right.  (It might actually kill him to smile!)

 

This was Rachel’s Valentine that was not meant to be (we were going to stick the sucker in her hand).

I sent it to Macey’s to get printed on Monday morning (she needed them for preschool that afternoon).  I don’t know what happened at Macey’s, but she was home from school by the time it got printed!  Good thing I had the tiny amount of sense to pick up a box of Valentine Skittles.

And I am horrible at taking pictures, especially of Emily and Josh since they’re gone all day long.  So I have nothing of Emily.  But, once again, she made the Honor Roll.  And, we got a great call from a teacher letting us know that she is so good at making everyone – especially the resource kids (special ed.) feel important, and what a quiet leader she is.  Proud parent moment, for sure!!

I’m Lazy

This blog is in need of an update.  But it’s not happening, ‘cause I’m feeling kinda lazy.

Or maybe it’s because I’m feeling a wee bit busy.

We’re trying to get our house ready to put up for sale.

It’s tax season.

Do you want to hear more excuses?  (Probably not…but I’ve definitely got ‘em!)

Daniel has a new trick – army crawling/lunging/forward movement kind of stuff!  So I’ll post a video soon.  If I can get over this lazy curse.