...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Tuesday, March 30, 2010

Another Easter Basket

After the doctor's visit I rushed Jack Snack home in time for his second session of PT. He did great, by the way. Then I fed him, burped him, diapered his cute little bum, and ran out the door to do Easter shopping while I could escape from The Littles. And while I shopped for said Littles, I realized there was something missing. Jack Snack needed a basket too! And so I retraced my steps and picked out a basket, toys, videos and a stuffed lamb for our new Little Chickie!

Piglet!

I took my Stinker Pie for his four month check up today. He is 20 weeks old, so it's actually 4.5 months. We had to see the doctor I do not care for, but this post is about good news, so I will leave that dog lying with it's fleas...

I'd thought My Little Pork Pie might have hit the 10 pound mark. He surprised me by tipping the scales at 11 pounds and 3 ounces! And he's packed it onto a body that is four whole inches longer than just two months ago! He's in the third percentile for weight and the fifth percentile for length. Is that for Ds babies or typical babies? Is that age adjusted because he was early, or not? I don't know! I didn't ask. Because I do not care! My Little Snorkis rocks and that's all that matters!

We were late getting home and Jean, our PT was there waiting for us. Her 1:00 o'clock baby has a cold today and cancelled, so she was able to work us in! I thought Starvin' Marvin was going to want to eat as soon as he got home, especially after crying so loud and long at the doctor's office and then conking out in the car, but he made it through 45 minutes with Jean before he started making hungry noises. Jean says she sees improvement already in his neck strength! Yeah baby!

Monday, March 29, 2010

I Can't Believe I Said That!

Our good morning this morning unfolded into a very good day. In the evening I'd asked The Girlie to go liberate Willie from his crib. I've been putting him down for naps in his big crib in his own room for about a month now. She came back with baby in tow. And she said, "Mom, do you think Willie's hungry?" And then she said, "Oh man! Now you've got me doing it too! I can't believe I just said that!" I ha ha'd at her because she'd just said the one name she swore she would never call her littlest brother because it reminds her of Willie Wonka and The Chocolate Factory! She handed him off to me like one would do if allergic to babies - at arms distance - and grumbled, "Dad's even calling him that now. You've infected all of us!"

A Good Morning

Today My Snooks is 19 weeks and 4 days old. I am so glad that he is so willing to follow my schedule! I tucked him into bed at 2 am this morning. He awoke me cooing at about 11 am, ready to eat. So the noon hour found us in my big rocking chair, seeing who could smile the biggest and who could speak the silliest. He is a delightful morning companion, especially when he decides that my best efforts at getting a smile out of him should be rewarded with a giggle! He did plenty of that while I held him! Does he still have Down syndrome? Really? Because I can't see it!

As I type, The Willister is sitting in his swing, sans motion, right behind me. He is carrying on a heated discussion with the loopy links attached to the over head mobile. He seems to know that the things attached to his left hand and foot make a delightful musical sound when he moves them. How do I know this? Because those parts were not moving when I attached them to his right foot and hand. The rights were. Now that they're on the left, it's all about shaking the left. And about the swing...sometimes he clearly does not like to swing. He wants it still. And he smiles when I stop the motion.






I tried at least 20 times to capture the smiles that accompany his staccato bursts of laughter. What resulted is about 20 pictures of his arm in his face, his eyes closed, his head turned, his mouth open, and what you get the instant after he stops smiling and laughing. So I gave up. Decided a little video might best serve my mission. Found the battery dead and could not locate any blank tapes. Dang! So here is what I did get...






So far in this blog I have written from my journal and from memory. Hence the absence of much commentary since Will's birth. And the long spaces between posts while I grappled silently with the diagnosis of Down syndrome before he was born. Today I decided to just be in the moment, rather than go back to where I left off once the Kiddles are in bed. They are still on Easter vacation, and that is how The Puppy and I got to sleep until 11 this morning! On the posts where I pretty much just say what he ate that day, I truly did do more than just feed him. I was too busy taking him in to journal more. I was busy soaking him up, staring at him, smelling him, hanging on every sigh and sound he made. And I was tired! Very, very tired. It's only been this last month that I feel like I did before I got pregnant, and have seen any sort of return of my previous energy. There is a good reason God made women to have babies in their younger years!

And now the noises coming from behind me are very clearly the grumbles that say, "Hey! Lady! Enough with all this stimulation already! I'm tired and I want a snuggle with my Mommy!" Better go rescue him.

Friday, March 26, 2010

Dim, Dull, Dumb

Tonight after The Littles had gone to bed, The Beloved and I were sitting on the couch with each other, enjoying Our Little Potato Bud's antics. It finally occurred to me that Willie is not what I was expecting in another way.

Everyone on the DS boards and at the Yahoo groups I belong to, and my wonderful mentor Beth, all said that Willie would be "more alike than different" as The Littles. They said he would learn everything, but in his own time. Slower. I realize now that I took that to mean he would be slower. Dim. Dull. Dumb. Shame on me. Now I see very clearly that he is every bit as awake and alive as any other baby. I thought Will would spend his life in a permanent fog. But he's not foggy at all. He's in there and he rocks! And I have learned for myself, in my heart, something new about babies with Down syndrome. They really are more alike than different!

I said all of this and more to My Love, about the dull and dim. He said, "Not him! He's already a little joker. Just look at him! He's already having fun with his bad self!" I never could have imagined during all those months of pregnant worry that we'd ever be alright again. But we are. We're all incredibly good!

Tonight while I was feeding Jack his last bottle of the day, he reached up and grabbed my nose! That was so fun he decided to grab my lips! His little grabbers are strong! I unclenched his fingers from my lips and kissed them and held them so he wouldn't tear them off! I'm going to have to teach him what gentle means!

Thursday, March 25, 2010

EI Visit

Jack made it through most of his EI visit with Anna before he conked out! He rolled, rolled back, rolled over, rolled back, had tummy time and did some arm and leg strengthening exercises. Mostly Anna did visual and auditory stimulation with him, encouraging him to reach out and reach for toys. There were a few times that Anna was sure that he was initiating patting the piano keys! Jack likes Anna! And Anna says that she can see that Jack's neck is noticeably stronger! In the evening he was sitting in his swing just chattering up a storm with Eeyore hanging from his mobile!

Wednesday, March 24, 2010

$74.00 in New Toys

Once again, Will proved he is a wonderful morning companion by waking me with his sweet cooing sounds. He was looking in the mirrored closet doors right next to his cradle and cooing and waving his arms and having a great time! When he saw me standing over him he gave me a big grin!

When Anna was here we toured Will's toy chest. He has lots of great stimulating toys, but they are all too large for his fingers to wrap around to grip. So...off we went to Target to buy more toys that have rings and loops for small fingers. I just bought a ton of toys at Christmas, and Santa brought some too...but now he will have some he can hold onto. I picked out toys with stimulation in mind when I shopped for Christmas. I just wasn't thinking about little hands and short fingers. His fingers are proportionate to his hands, and the rest of him, but where I think he's grown huge - not so much! Anna showed me that his little fingers just aren't long enough yet to wrap around a standard baby toy.

Later in the evening Miss Peach sat down by Jax and played his musical piano for him! Oh boy! He got into a full body wiggle and his eyes got so big! When the Dear Daddy got home I was unwrapping his new smaller toys. He picked one up and walked over to Dear Baby and pressed it into his palm. Jax closed his hand around it and brought it right up to his mouth! Smart boy! And he started chatting to it! He just needed the right size toys!

Tuesday, March 23, 2010

First PT

Today we had our first home visit from Physical Therapy. The lady's name is Jean and Will and I both liked her quite well. There were the million and one questions while we sat on the floor and I held Will. As with Anna, by the time Jean got to the hands on, Willie Boy was ready for a nap. She gave him an assessment before he tuckered out completely. She also said his over all tone is pretty good, not too floppy, not too tense. And she agrees that he has a big neck lag problem. She showed me some exercises to do with him. One of the most important things I think she said was that neither she nor Anna were going to make Will crawl or walk any sooner coming just twice a week. She said it was up to us here at home to do the homework and work with William. So we have a plan that she will show me what to do and I will do it!

In the evening it was quite clear that Willie is batting at toys! He's not just randomly knocking them about waving his arms, he focuses on a particular toy and then goes all out bats hitting it! His feet and legs often get in on the action, sort of cheering his arms on! And he might be a lefty - he's usually attacking his toys with his left arm! Both Jean and Anna asked if he's brought anything to his mouth. I'll have to remember to tell them that he grabs at anything fabric and drags it up, as well as The Girlie's hair and his Daddy's fingers.

Thursday, March 18, 2010

College Bound

At today's EI, the verdict is the William has total neck lag. I think he was just being lazy because I've seen him hunch his shoulders to hold his head up, but he sure wasn't showing Anna any of his brute strength. Anna says he has good over all tone. Not too floppy, not too tense! And as for Anna - well, I want her job! She gets paid to play with babies! How much does that rock! I think Will is too taken with her to show off his skills much - he's very absorbed in watching her face and listening to her speak to him! Or maybe he's in love!

So into every infancy, for me at least, must come moments that bruise my heart just a little. They are the things that evidence a baby's health and well being, but they stab me just a little. Today I noticed that Will-The-Sugar-Pill's feet reach the end of his swing. Next week he won't be my baby anymore and the week after that he will leave for college. Dang.

Guard Duty

Princess thinks Jack is her puppy.
She takes guard duty of her puppy very seriously.
She gets about this close, reaches out to lick his head, sniffs his face and hands, and then lays down by him.

Sunday, March 14, 2010

A Full Set



I was feeding Jack-Snack this morning when I noticed two little feathery shadows under his eyes! He has sprouted tiny little wispy blonde eye lashes on the bottoms! Now he has a full set! The tops have gotten nicely brown so I'll bet the bottoms do too! Bunny Boy has eye lashes!

Saturday, March 13, 2010

Old Man Pants

Old man pants! The Girlie did this to him...

But he didn't mind at all!

Friday, March 12, 2010

Laughing Out Loud!

So last week I take Miss Peach to the chiropractor for the first time. And I have to pay for a visit for myself too, because she's having none of this bone crunching business without seeing it done to The Mommy first. If The Mommy lives, then she'll do it. Maybe. Okay, so she did it and she lived and we're back for visit #3. I fed Willie Boy while we waited and we were engaging in the ever ongoing Battle o' the Burp. In walks the chiropractor, while I'm hoisting my infant in the air for some bouncy aerial acrobatics to get him to burp, just as Willie lets out with an audible "Ha! Ha! Ha-ha-ha!" I turned Willie toward the doctor, holding him up as proof and said, "He's laughing! For the first time EVER!" So we stood there bouncing Willie up and down like maniacs while he laughed, "Ha! Hah-ha! Ha! Ha!" and the Dear Girlie waited patiently on the exam table for all this silly mad insanity to stop so she could get her bones crunched. When we got home I had to replay the whole thing for The Dear Daddy, who more often than not rolls his eyes at me when Willie fails to do whatever trick he has up his sleeve that week. This time he looked right at his Daddy bouncing up and down in his vision and laughed! "Ha! Ha! Ha! Hah-hah-ha!" Cute kid!

3 Months Old

Thursday, March 11, 2010

Rolling, Rolling, Rolling...











Tracking, Rolling, & Elbows!

Jack's big sister is one of his favorite people on the planet. He often spends Saturday and Sunday mornings in her arms for a warm snuggle while I get his bottle ready. Any time that I put Jack down someplace and turn an instant later to find that he's gone missing, I only have to find Miss Peach to find My Ducky Boy. He is her real live baby doll and she has appointed herself the guardian of all things William. Will has always been able to screw his head around 360* to track me, and now he does it whenever his big sister is afoot.

On the play mat this week Will's new skill is turning onto his side and holding there for about 3 seconds before flopping back onto his back. He only does it on the play mat, repeatedly, and no amount of coaxing can get him to do it on any other surface.

He continues to engage in quiet back and forth babble with me, especially in the late morning, after his first nap and second bottle, when The Littles are at school and the house is quiet. He's very tentative about it yet, like he's just now certain that if he makes a noise I will make it back to him. He often does this chatting thing with his little grabbers held together under his chin. He wiggles and smiles when I jabber back to him. Then he gets an expectant sly smile and jabbers to me! It's FUN!

On the 11th, Will had his first visit from Anna, the Early Intervention specialist. It was mostly interviewing me that first day, as by the time she was ready to hold and greet Will, he was working on a tummy ache. He was fine with her holding him at first, but quickly started with the hard crying that heralds gas pain. I sat with him in my lap, rubbing my fist in circles on his belly while the farties rolled out. He was content to sit and stare at Anna, smiling at her now and then, as long as I didn't stop working on his belly. It amazes me still that I can dig so hard into his tummy to get relief for him. By the time he was de-farted it was time for Anna to leave. We'll try again next week. At least the initial meeting was a success!

In the evening after his first EI meeting, Will started rolling onto his sides and staying there! I usually put him on the floor surrounded by toys. He would roll over to see a toy more closely and then it was very clear that he was flipping back onto his back when he wanted to rather than simply falling back. Then he'd see a toy on his other side and roll that way! He entertained himself for an hour this way!

And my new favorite body part are his sweet pointy elbows! They are too cute!

Tuesday, March 9, 2010

New Use for a Doughnut

My solution to the daily "Where's the baby?" game! With his Boppy turned upside down, despite manufacturer's warnings, and placed at his feet, Willie no longer slips into his burrito wrap causing his mother to fly to his side to jar him awake to make sure he hasn't suffocated! Now I can easily see and hear him breathing and being a normal color. The kid really had me going a few mornings.

Ooompa Loompa Loompity Lou...he just looks huge to me.

Saturday, March 6, 2010

Will's Week


The smiley boy has been just that - smiley! On Monday I was holding him and feeding him a bottle when The Middle came bounding in the door from school. Now Will takes this eating thing very seriously, and gets cranky really fast if the bottle is removed from his lips for any reason. He'll tell you about it immediately with the crinkled red face and the "Eeeenk! Eeeenk! Eeeenk!" cry. It doesn't matter how noisy the house is and it could fall down around his ears as long as the bottle GOES NO WHERE! So the Whirling Dervish comes flying in amid the noise only a seven year old boy can generate and plonks a big, wet, rough kiss on Will's forehead. Will's eyes fly open! He sees who it is and - what's this? He breaks the death grip of suction on the bottle clamped between his gums and grinned up at The Middle! A big wiggly gummy grin that shot sunlight out at all angles! Then he frantically sucked his bottle back into his mouth to double time it to make up for lost nutrition! That was close - he could have starved to death!

In the evening, The Dear Daddy had Willie up on the couch to play. He marvelled that Will went from pile-driving his little feet into his ribs for a solid 30 minutes to deeply sound asleep in an instant. Kick-kick-kick-snoring! Babies!

On Tuesday morning The Willister rousted me from sleep with the hungry noises. I went to fetch him from his cradle and he beamed up at me! He's never greeted me with a smile before, especially first thing in the morning when nourishment must be a made the top priority or calamity will surely strike! Then back to the hungry noises.

Willie boy has gotten into the habit of holding on to his burps. This requires that I employ a variety of tactics to get it out of him. I pat him. I hold him over my shoulder and beat the tarnation of out him. I sit him upright on my knee and pat him. And bounce him. I hold him semi-reclining and whack his back. One trick that sometimes works is to hold him under his arm pits and bounce him up and down in the air. This usually gets a smile out of him, but today, Wednesday, he started making some "Ha! Ha! Ha!" sounds. If he could have gotten some volume behind his breath he would have been laughing!

Thursday morning brought more pleasantness with the morning wake up call. Will was laying in his cradle just making happy noises. I think he may have been celebrating turning 16 weeks old by experimenting with what sounds he could make and he was having a happy time of it! He never did cry to get up to eat. I laid there in my warm bed for a while listening to this new magic. When I went to get him up he gave me the biggest, full bodied wiggliest grin! This baby is so much fun! And! Best of all, he's NOT a morning person! His diaper held a surprise too. His little poop was solid. Not squish - solid! And HUGE! How did that giant thing come out of little Will?

The Jackster finished out his week with more smiling, cooing and merry making. He coos at The Daddy, The Littles, Me, toys, the mobile, the dogs...and to himself!

Friday, March 5, 2010

So why Stinkerie?

I've added this post to my dashboard, but I couldn't part with the comments. So now it takes it's rightful place, under the correct date of which I acutally started this blog!