...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


MusicPlaylistView Profile
Create a playlist at MixPod.com

Wednesday, April 27, 2011

She's A Keeper!

So when I get home tonight, Katee, our nurse, asked me if I'd gotten Will's sedated ABR appointment yet. I tell her no and remind her that the audiologist said it would take 4-6weeks before we get our appointment notice in the mail. So she asks, if tubes are recommended, would I get them put in. I said yes, that it was extremely important that he be able to hear well in order to speak well, and then I mimicked someone who cannot hear or speak well. I said If he can't even say his name clearly, who is ever going to want to promote him any higher than the grocery bagger* or the cart boy* using the jerky rapid cadence and softened consonants of our older disabled citizens who did not have the benefit of early intervention and speech therapy. And her eyes welled up and spilled over. She was stricken. She said it really hurt her that society does not realize the value of children with Down syndrome. That it angered her that so many wonderful people were denied opportunity without ever being offered the chance to try. That she would love to parent a child with Down syndrome. She's certainly a keeper.

Katee's story is not for me to tell. I will invite her to my blog to tell it in her own words if she would like. What I can tell you is that her experience in being Willie's nurse is different than with her previous two charges with Down syndrome. Different in that Willie has full run of the house and does not spend his entire day and night in his bedroom. Different in that Willie's family celebrates him and marvels at his being. Different in that Willie is given every opportunity for therapy, to learn, to grow, to be. Different in that Willie will grow up with expectations placed on him. To go to school. To attend college if he chooses. To get a job. To marry if someone steals his heart. To live as independently as he is capable of. To be a productive adult. To be happy. To make his own choices. To live. Katee is a woman half my age. Her other two charges were not in years gone by, back in the dark ages when parents hid their imperfect children away. Nope. These are very recent events. As recent as this past March. Modern day children in modern day families. Secluded in their rooms. Not provided with therapies. Fed, clothed and sheltered, but hidden. Denied. I understand her tears, and I hurt for her having seen those things, but I thank my God in Heaven every day that she's come to us.


*There is certainly nothing wrong in being a cart boy or a grocery bagger, but while the stars are ours to reach for, I will hold Willie as high as possible to reach for whatever his heart desires.

Sunday, April 24, 2011

Weight...

We've been stuffing The Jax-Snack full of every high calorie, high fat item we can think of. When I say we, I mean his nurse Katee and I. He gets egg yolks and avocado for two of four spoon fed meals a day, yams loaded with full fat butter, egg yolks with hollandaise sauce, almond meal mixed with coconut milk yogurt, egg yolks with butter, flax seed oil in everything it can be disguised with, oatmeal with butter and local honey, some variety of yogurt with every meal...you name it, we've tried it. Tonight for Easter dinner he had mashed potatoes loaded with butter, just a bit of gravy, stuffing loaded with butter and at least a half cup of sweet baked beans. He really enjoyed the baked beans and I think the best part was sitting up at the table with the whole family for dinner! I toyed with the idea of grinding up some ham too, but he spit out every tiny piece that I tried to slip into another bite of food. For all of this effort, we've gotten tons and tons of dirty diapers. Last week he weighed 20.02 pounds. This week he weighed 20.04. I guess we're attacking this weight loss issue by gaining 1/3rd ounce at a time. At least he seems to be genuinely enjoying the new variety of foods in his diet! Please, do add any high fat, high calorie ideas you may have!

And I promise to post Easter pictures soon!

Sunday, April 17, 2011

New Pictures

I've gone back as far as April 1st to post pictures...just scroll thru my mindless rantings until you hit pictures!

This Little Allstar...

...spent the entire night last night in his own bed, in his own room! He greeted me in the morning bopping up and down doing standing practice at the crib rail! And this afternoon, he took a nice long nap in his own bed, in his own room!

Scratching, Pinching & Biting, Oh Dear!

Clearly, we need some help. Okay...I need the help, because as both of Jack's nurses assure me, this neck pinching, hair pulling, ear scratching, jawline/chin biting and digging of his pointy little chin into the soft flashy part of one's face? Reserved for me alone. When I scoop Jack up out of bed in the morning to a lesser degree, or when I come home from work to a much a greater exponential degree, his little face lights up, his grin spreads across his face and his arms scoop around my neck while he burrows into me. And seconds later one hand is pinching my neck, trying to gain leverage to climb higher in my arms, and the other hand and often both are grabbing fistfuls of the finer hairs at the back of my head to pull himself higher, the pain of which is only matched by his forceful grinding of his chin into my cheeks. All the while he makes a breathy and excited "Ooooooh, oooooh, ooooooh!" sound. Yes, he clearly loves me to pieces. Yes, he misses me while he sleeps or when I'm gone. Yes, he very clearly is happy to see me and knows who I am. But it hurts. It hurts bad. I see stars. I used to be able to extricate myself fairly quickly. Lately though, more often than not, I need help! I can only grab one hand and keep from dropping him...or more likely, suspending him like a pendulum from my scalp and flesh! By the time I wrangle one hand free, I can hear the hairs tangled in his other hand popping from my scalp by their roots on their way to the floor. When I try to free that hand from my recently cropped mane, the first hand either grabs neck skin or another batch of hair! By this time Jack is singing out a chorus of "Eeeeeee! Eeeeee! Eeeee!" and exuberantly bouncing up and down in my now tenuous grip. This is about the time he sinks those little fang like bottom teeth into my jaw or chin. Those top teeth are real charmers, too! So please, help me out here! I've tried the disapproving scowl. He thinks it's funny. I've tried putting him down-he screams like his little heart is breaking into pieces. I've tried - yes I admit it - slapping his hand when he does this at nap time. That just ticks him off. I've done the nice, soft, gentle mantra for so long it isn't funny. By the way, he gets nice, soft and gentle for about ten seconds then his little eyes gleam and he digs into whatever flesh is handy with redoubled efforts. Help me. Please. I adore that he's so happy to me, but it's becoming a very painful and worry fraught event to come home! COMMENT, Please!

Thursday, April 14, 2011

A Shiney New Wrench

Took Willie for a more advanced hearing test yesterday. The verdict? Moderate bilateral middle ear hearing loss. Dang it! I thought he might have some mild hearing loss in the left ear. I also thought it might be his tiny ear canals. Or wax. Or something. I didn't see this one coming. The very lovely audiologist (seriously, I loved her manner!) said he may hear better than he is able to indicate, but based on his behavioral responses, she's estimating his loss as moderate. Both sides. In the middle. Dang! I did not see this one spinning nor did I hear it's whir, feel it's wind...until it chunked Willie right in the head. I haven't had five minutes to even think about how I feel about it. Eventually I will cry. And then I will get over it. Because Willie will need someone to show him the way. And maybe I'll just cry now. Dang.

Tuesday, April 12, 2011

Playing With Sunshine

Jack has been so fascinated with this late afternoon ray of sunshine that appears on our kitchen floor every day. There was a rug there, which he pulled away after failed attempts to grab the light. You can see his elongated thumb and fingers as he waved his hand. Maybe he can get a better idea of how to grab it from this angle...
This seemed like the perfect plan until the slippery rug undermined his footing...
Okay...let's try this!
Jack found that even standing on his legs, that ray of sunshine just would not be picked up!

Monday, April 11, 2011

The 'Too

Here it is, almost finished, almost healed. I still have to get some work done on the faerie to bring the purple in a little further, and add pixie dust to her dandelion puff body!

Sunday, April 10, 2011

Too Precious For Words

Sleeping babies have long been my weakness. Just ask Auntie Bits, because I have pictures of all of her babies sleeping, until I was blessed with my own. This cushy matt material is wall-to-wall in our home now. Well, everywhere there is tile floor and no carpet. It's meant to protect a little noggin from the terrors of learning to move his body about, as well as all the crashes that come with it.

This unexpected baby has been more blessing than anyone deserves. I love him so. There are no words to contain this love, only ineffective attempts to describe it.

A Transfer...

...such a small thing really, but oh was it celebrated! Last night Willie-Pie was engaging in one of his new favorite activities, standing at the coffee table playing with toys on it's top. And then something caught his eye in his Daddy's hand, and he transferred easily from table to couch to get to it! The Dear Daddy whooped! "Did you see that? Did you see what he just did? Did you? He went from standing here to standing over here! Did you see it?" Yes, I saw it! In all honesty, I was distracted and I may have missed the significance of this event if My Beloved hadn't called attention to it. How sad is that? But he did call my attention to it and I did see it, and so we gave each other that knowing look that says, He's getting more mobile and there's a whole new list of mischief he'll be getting into. Oh no! And we smiled to each other.

As I type, Jack is laying on his back in front of the kennels, rhythmically smacking himself in the head with the mesh metal kennel door. I think he likes the noise. He will also spend a good amount of time rocking his head into the heavy metal screen door, the glass sliding doors to the backyard, his mirrored closet doors. They all make a great rumbling noise, and he doesn't cause himself injury. I've seen him take aim at other surfaces and deliberately bang his head into them. If a satisfying noise is produced, he continues. If no noise is produced, he gives it one more whack for good measure, giving the object another chance to make an entertaining noise, and if still no noise is produced, he then goes on his merry way in pursuit of other exploits. Do any of your pre-toddlers engage in this kind of self-stim?

Oh, My Heart

Yesterday we ran some errands and on the way out of one store, one of The Girlie's favorite songs was blaring from one of the cars. We smiled knowingly to each other without saying a word. Such little moments between a Mother and Daughter. We were on our way to the next and last stop...picking up her ice cream birthday cake from Cold Stone Creamery. Her birthday was last Wednesday, a school day, so we celebrated that day with presents and again yesterday with cake!

A large red truck parked next to us. A smiling little girl had her name emblazoned on her window in flowery lettering and I noticed because it's the same name as My Girlie. Another little girl was smiling from the other seat. They were laughing together about something. My eyes automatically looked for her name on her window, and even in reverse, I could read the bold flowery letters clearly. Hannah. Two little girls. Two sweet names. Will it ever stop hurting that we lost our Hannah?

Of course not. And some days, most days really, it does not stab as deeply. But yesterday, with both of our girls' names emblazoned so boldly, so freely, so vibrantly in other parent's hearts...yesterday it hurt deeply.

Saturday, April 9, 2011

Fastest ER Trip Ever

Yesterday morning The Little Jack-Snack woke up with some serious green crusties all but sealing both eyes shut. I smeared some water based super mild makeup remover over both eyes and let it sit for ten minutes, and then wiped it all away with nary a protest from The Snackster. Checked a temp. Normal. Listened to his lungs. Clear. Tried to see into his little ear-balls ~ after three days of every doctor in the state probing everything from his eyes to his parts, he was having nothing to do with me going at him with an otoscope! And yes, ear-balls is a word! Google it!

So, my week long fantasy of actually getting some sleep this weekend was shattered first by the fact that I am on call this weekend, and second by Jack waking up fussy and inconsolable at four am. After trying for 10 minutes to soothe him and getting no where, I decided we'd better get up and be more aggressive with the Mommy comfort. And that's when he put his little palm on my cheek. It was hot. I took him to the nursery to check him over and as soon as the lights were on I was treated to the vision of my baby's face smeared with dried green gunk from forehead to chin. Yuck. Green snot from both nostrils. Greenish yellow crap in the lacrimal ducts. Temp? 104.0! Had liquid diarrhea for that diaper and squishy, more full bodied diarrhea a few minutes later. Off to the ER we go...

...checked in at 4:55am after finding a near empty parking lot and a slot near the door, which is really good because the temperature outside was 26.8. Called my on-call recruiter to advise I might be out of cell-phone signal range, advised she'd call my boss for any issues. Saw the nurse, who took the time to coo over him, didn't like how he looked, put an O2 sensor on him, 97% on room air, checked him over, had a squishy diarrhea diaper, got weighed, found out he's lost another 2 ounces for an even 20 pounds with a diaper on. Played with the O2 sensor cable, seemed delighted that Mommy could not take it away from him and say "No!" Got cooed over by every one from housekeeping to engineering, tried hard to stick his head between the rails on the gurney, got mad that I wouldn't let him. Next he tried to jettison himself over the top of the rails instead, laughed at me like it was a funny thing when I wouldn't let him do that. Saw the doc, who also took the time to coo over him. Doc checked him over, said the measle-ey looking rash now spreading across his cheeks and neck is viral, got cooed over by security while we waited for our 'script. Left. Called my on-call recruiter to tell her I was back in cell phone signal range, advised that no calls came in, my boss was not disrupted from her peaceful slumber. Went to the pharmacy, avoided vomit on the pavement right where I get Jackie out of the car, got Jack back into the car while avoiding the vomit and scrambling to figure out where I'd left the 'script, found it the top of my on-call bag in the back of the van where I'd put so I could find it while I was bungee-ing down the stroller I'd wheeled Jack into the ER in. Avoided the vomit while once again getting the baby out of the car, went into the pharmacy, got cooed over there, turned in our 'script, read 'Dear God, It's Me' to Willie while we waited. He liked it. Didn't buy it, had ratty edges. Got our 'script filled, got a syringe which wasn't in the bag when we got home, went out to the car to again avoid the vomit on the pavement while I put Jack back in the van, drove home through wakening Saturday morning streets while listening to Willie coo, and pulled into our driveway at 6:44am. And guess what the doc said? Sinus infection persists, for one, severely inflamed right ear for another, mildly inflamed left ear. And guess what he gave us? Yep, you guessed it! Augmentin. Said it would have been his first choice for The Willister. Damn that Dr Asshat. If I had the energy I would begin every one of my blog posts by writing his real name and then issuing culturally sensitive insults of the most damning kind, suitably proffered in the language of his national origin. But I don't have the energy and he's really not worth it. So he will remain Dr Asshat.

Jack's playing happily on the floor now that his fever is down, telling his telephone very loudly, "but, but, but, but!" alternating with "wub, wub, wub, wub!" I'm having coffee with sugar, a scoop of chocolate and obscene amounts of coffee creamer, some Excedrin maigraine for the caffeine content, and a toasted "Everything" bagel, piled high with fluffy comforting clouds of whipped cream cheese! The entire household remains asleep. Jack feels better. Life is good.

Thursday, April 7, 2011

3 Days, 3 Doctors, 300+ Miles

Yes, you read correctly. We've been to three different doctors in the last three days. I am glad to see the end of this week peeking around the corner. Here's the quick run-down:

Tuesday, opthomology: still near sighted, vision is stable, no glasses as yet because Jack's whole little world of interest is right in front of his face at this age. Come back in four months.

Wednesday, urology: Good news there. I am very happy to have at long last actually seen my son's penis. Sound weird? Of course it does! But he's almost 17 months old, and until now, his foreskin has had zero inclination to recede. Wednesday must have been the day, because a very funny MD slid it right down and off. This has only been an issue because Jack pees up! The newborn documentation also claims he has an epispadus. Until now, we've had no suggestion otherwise, because we could not see where the opening actually was. He doesn't! His little pee-pee has the opening right where it should be! Yes, I know it's a penis and a urethra...but on my baby, it's a pee-pee! Good news there. No surgery needed to correct the opening! Although, I was kinda hoping for a "medically necessary circumcision." We have some steroid cream to complete the process; come back in a month.

And today, we saw our final doctor for the week. Jack has a new primary. The final straw for Dr Asshat came this week. After the long months of waiting and getting denied at every turn, Regional Center has funded our LVN and she started Monday and we love her! After signing the plan of care and all the orders we've sent to Dr Asshat, he refused to sign the start of care for our LVN. He said it would be fraud. He said he had patients to see. He hung up on me. Bastard!

I like the new doctor. He listened to me and gave his best medical opinion. Nor Jack's LVN or I agree with his assessment that Jack's mental retardation is "moderate to severe" but Jack was sleepy with a full belly and was no where near being up to his usual antics. He's been just a little off his usual self, which I kinda suspect may be a return to of the sinus infection, now that the ten days of Amoxicillan are up, but he's had no fever and just some mild crankiness which could be getting-another-molar related. The doctor only saw us for 15 minutes tops, during which there was much animated discussion while I rocked a sleepy Jack in my arms, so I'll forgive him this one transgression. We disagreed on the nutrition of soy milk versus formula versus Pediasure, but he said he'd research further and that I might be correct. In the meantime, we're to try Jack on Pediasure and see if he tolerates it. As far as I know, it only comes in a milk based version, so we'll start that this weekend and see how it goes with Jack's tummy. Moms ~ please comment with your high calorie, non lactose, nutrition packed alternatives! This doctor sees lots of developmentally disabled children, but Jack's his only little one without a Mickey button. He said he would research lactose free alternatives too, to try the Pediasure in the interum.

And here's the rub. Jack has lost another 2 ounces. he's down to 20 pounds, 2 oounces. No more soy milk for him. The doctor whole heartedly agreed that Jack now needs skilled nursing for the hours when I or The Daddy are not with him. We've been approved for 11 hours a day, 5 days a week. We have a share of cost, but it's still cheaper than the babysitter who doesn't really know when trouble is brewing. Even if it cost twice as much as the sitter...the peaceful feeling I have driving away, knowing he is in good, loving and skilled hands is worth it! The doctor said to have the orders faxed to him, he'd be more than willing to sign them!

And there's the 300+ miles. Two of these days I drove 45 miles to pick up Jack and his nurse, only to drive back 57 miles to the doctor, then 57 miles back to take them home, then 45 miles back to work. Today I had only had to do the 45 mile trips...4 times!

Sunday, April 3, 2011

Nebulizer Fun!





He makes it look fun!

Too, Too Cute!

Photos taken 03/20/2011...finally posting today!

Pictures! Finally!

I could have titled this post "March Madness" because it is a sweeping look at what Jack has been up to this month. I also could have written several quippy posts to go with each set of pictures and just pretended that I've been posting all along, and that you, Dear Readers, have just been remiss. However, if any of you are still following me, waiting for me to get off of my duff and actually write a post, you would recognize the lie. So here we are, Jack's month in pictures: His new trick is transitioning to sit. Use your imagination please, because he doesn't fully sit up without something for support At the cardiologist's office in early March The persistent cardiac defects are not slowing him down one bit It took a decree from God before the nurse would believe that I would NOT allow him to fly off the table...she finally left the room, but refused to close the door on us! Kneeling practice...wherein the skill is to stay upright while using his arms to play Which led, eventually, to pulling up... ...with a little stabilization thanks to The Dear Daddy... ...and he's standing tall to see his doggy Sopha-Loaf! Here he is showing off how well he sits up with the confidence prop of a sturdy box of filing-to-be-done but in actuality won't-happen-any-time-soon! He has to visit Princess too! Which all eventually led to this! I was sitting on the couch just wondering when he'd pull to stand on furniture, and up he went! Apparently, the Kleenex box is a powerful motivator! ...and Big Sis stood by on guard... Now for some leisure reading with Daddy And more standing skills. You know, just to prove it wasn't a fluke! I love this happy boy! He gets everywhere in the house now in lightning speed. He has a fondness for the vacuum cleaner Bad hair day Discovering his shadow... ...and trying to kiss it! The Girlie was highly amused with a story I told her about when she discovered her shadow. The Pod wanted to know about when he'd found his. Sadly, I had nothing. Finally I said, "Honey, when you were little like that, you didn't stop long enough to create a shadow! You were always on the move!" Happily, he was satisfied with this. I was a little sad. But, it is what it is, no? The boy LOVES his bath! And he adores Grandma Emmee... ...and the ball she brought him for St Patrick's day Let's help with the dishwasher... ...it makes a fabulous racket when you shake it! And there it is...his month in pictures. I love you baby!