...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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Thursday, September 30, 2010

Pictures...

...I finally posted pictures going back to September 24th...scroll down! There are at least three long winded rants mixed in...maybe four...and possibly some shorter ones...but I promise the pictures are cute!

Echocardiogram

I'm worn out after today's adventures, so this will actually be brief! Jack had is 3rd echo today. After both Dr Owen and a sweet intern named Christina examined him, Dr Owen said his murmur sounds more like an ASD than anything else. The echo says not! The PFO persists, and the VSD most certainly is still open, but small. So, where the heck was the oddball murmur coming from? Interesting story. First let me tell all of my fellow nurse friends that Jack does not have any sort of aneurysm in the sense we think of aneurysms. What he has is benign, but also so infrequently seen as to be an oddity. All of the interns were lined up to watch the replay of Jack's heart, trying to hazard guesses as to what they were looking at. Then Dr Owen would let them off the hook by saying they wouldn't see this often. By the time I had Jack fully dressed, I'd seen it enough times to describe it. For the last two interns, after they'd made their guesses, Dr Owen said "Mom?" So I repeated it: You're looking at an aneurysmal vetricular septal defect flap, and pointed out the muscular flap of tissue protrusion that attempted to close the hole with each beat of Jack's heart. Purely esoteric, but interesting.

So we're basically right back where we started. An open PFO that will likely close very soon, and a small VSD that will also close very soon. Not insignificant, but small all the same. And not something they would even consider surgically repairing! Follow up in three months.

Jack weighs 17 pounds 9.5 ounces
He is 26.8 inches long
Head circumference is 17 inches with very poor attempt at accuracy
BP LUE 91/58

The same surly gal did his weight, measure and blood pressure, but today she wasn't about to be charmed into being pleasant to even Jack! Maybe her hemorrhoids were itchier today.

While we were at the cardiologist's office, Dr Asshat called. He said that our insurance would not authorize the barium swallow study; that he'd set us up with their ST services to be evaluated again; there was currently an 8 month wait, that he'd get an urgent referral; that they would have to be the entity to refer us for the swallow eval; and finally that any swallow eval that took place would have to be done at big county in LA because no one here in town will take a baby. Dang. He also said that if I didn't hear from the referral department for our ST appointment within a week, to call him back personally. He even took the time to ask if we'd gotten our urology consult appointment yet. Hmmmmmm. This is new. Maybe the radiologist passed on the earful he heard from Dr Elaine and I both. We'll see.

Wednesday, September 29, 2010

And Now This...



BUSTED!!!!!

Emily Needs Your Prayers

This little dolly of a girl has just been diagnosed with AML. Let's pray her all better. Click here to go read her blog and lend some encouragement to her family!

Tuesday, September 28, 2010

Strong Man!

Just one month ago, Jack's arms were not strong enough to hang on to this light weight toy...



Now look at him go!
You've come a long way, baby!

Crap!

Crap, crap, crap! I can't say it enough!

Yes I promised that I'd post pictures. And I will. Later. But first I must rant. I simply must!

That stupid asshat of a doctor has officially had his 'points' revoked! Yes I am ranting about the alleged swallow study today. It was scheduled for nine am. We were there at 8:45, only to be told that the radiologist was not on premises yet and that there were two other cases before ours. Then the news. There was no swallow study ordered. It was ordered as an esophogram. To see what happens to the liquid after it's in his stomach. Dammit! There are no digestive issues really, we were wanting to know what happens to the food on the way to his stomach. Like for instance, oh, maybe was it winding up say, just for grins and giggles, in his lungs? This doctor has trifled with me for the last time.

Dr Elaine met us at radiology, because, well, she rocks and since she rocks she wanted to be there to see the swallow study for herself. And since the radiologist was late and she had another case that she'd had to leave for before we were finished anyway, she used her time effectively. That's right. She tromped herself right over to the pediatrician's office, Dr Asshat from here on out, to request specifically, a modified barium swallow study. Again. In person this time. And Dr Asshat would not make himself available. So...she rounded up another pediatrician, explained the problem, and he ordered a modified barium swallow study. That Dr Asshat would have to approve.

Despite the fact that Jack's test was scheduled for nine am, and that the place is 20 minutes away, we were still home by ten am. That's even with driving through Jack in the Box for a grilled pastrami sandwich with extra pickles and a large strawberry soda with curly fries for breakfast. Have you tried those grilled delights? They're good! And just what I needed to soothe my ire. And Laurie, the supervisor at radiology promised me that she'd be "All over Dr Asshat like a dog on a bone" to get the approval. Of course she did not call him by his new name.

I was just finishing up the last of this culinary delight with extra pickle sticks (Yes, they call them pickle sticks!) when the phone rang. It was Laurie. She said that yes, Dr Asshat was resistant, but Dr K, the radiologist, and Dr Elaine's input, finally swayed him. The damned swallow study is finally ordered. And now we have to wait for approval from the insurance company. And we can't do it here, or even at either of the hospitals here in town because he's so young. So, a trip to the big children's hospital in Los Angeles is in our future.

Another interesting call came before I had gotten it checked off my list to call "them." Urology called to let us know that Jax Snax will be seen on October 14th. Here in town. At the Urgent Care of all places. It seems that there is an 8 month backlog for pediatric urology, so the doctor is doing extra days where ever he can secure an exam room. So, yeah for Jack's 'junk.' We'll be seeing that doctor sooner rather than later. Our optho appointment isn't until November 9th, in the valley. Again, a back log. I was reading Jen's post about Elijah's eyes and she says something about being pretty sure that Eli wasn't seeing any greater distance than three feet. I'm thinking this is the case for Jackie Boy as well. He always turns to face people of interest, always. But he doesn't "find" them and give the resultant jubilant smile unless the target is within about eight feet. So, while I wish this appointment were sooner rather than later, we do know that Jack can see, so we're trying to wait patiently. And when I say we I mean me. The Beloved is blissfully unaware of most of these appointments until I tell him about them the night before. Or that morning. He stresses too much over stuff he cannot influence. And since the majority of his free time is now happily and noisily being taken up by playing with The Littles, I just let him be happy. It's good for him and it's good for The Littles, and what is good for them is good for me also. I do believe that if Jack requires surgery on his 'parts' I'll wait until about a week before the date to tell The Dear Daddy. We'll have to see. Or maybe I'll just wait until Jack is in recovery.

So there it is. The Swallow Study That Wasn't. Jack sees Dr Asshat November 15th. If he can show me where he ordered a modified barium swallow study and that his orders were not carried out, I will spare his sorry ass for another day. If he cannot, well, I will polish, print and mail the letter I've already begun drafting to the medical director. Like I said, he has trifled with me for the last time.

Monday, September 27, 2010

Feeding Therapy and Swallow Eval Tomorrow

Slow down.

Eeeesh. Feeding therapy always goes well while Dr Elaine is sitting right here with Jack and I. Jack and I. Jack and me. Me and Jack. Which one is proper? I'd been taught the first version, but I've heard it's no longer proper. A teacher actually told me that 'me and Jack' is now considered proper. Is it? I don't know. I'm sticking with Jack and I. Does proper grammar ever really go out of style? I don't know. But there it is.

Anyway, feeding therapy hasn't gone poorly, but it always goes much better when The Good Doc is there with us. And this past Monday, she really motivated me to step up my game and diligently do Jack's feeding therapy three times a day, instead of the one or mostly two times per day I'd been doing it. In my defense for the twice daily thing, Jack isn't really a morning baby. We've done feeding therapy with Dr Elaine in the mornings, and he's been less enthused, less interested, and much quicker to give us cues that he'd just as soon be done with it. His new trend of being bright and chipper and rarin' to go between 8 and 10 am fit nicely into my new resolve.

And that's where things went awry. I've been diligent to jiggle, swab, Nuk, massage, tap, dip, dive and coach Jack's mouth into compliance. If I were looking for success in terms of consumption, I'd give us both all aces. He's certainly consuming about 95% of what I offer. And that would be 4 ounces of veggies, 4 ounces of fruit, and 2.5 ounces of meat. Plus sips of formula. And he enjoys eating. In terms of the tongue thrusting and lip closure, I'd give me a big fat resounding FAIL. And by mid week, while Jack was still enthusiastically interested in eating when we started out each time, he was clearly not enjoying it nearly as much as he had been by midway through.

And with every little incrementally less successful feeding therapy, I became more and more discouraged. Disheartened. Disinterested. By Friday afternoon I was convinced that I was actually hurting his mouth and I stopped mid way through session #2 of the day. I gave him liquid nutrition all weekend, knowing that Monday afternoon would bring The Good Doc, and with it, a lot of instruction and encouragement.

She found the problem before we even got started. Poor Jack. With the very first preparation exercise, it was clear that I've just been moving too fast for him. My determination to do the right thing, to be diligent and dedicated, to really apply myself 100% to what he needed every single session, I'd turned into this focus driven, crazy, wild, frenetic mass of energy and poor Jack was kinda left to sputter in my dust. Poor, poor Baby Head! Dr Elaine said one simple thing. "Slow down." And that made all the difference!

And once again, we had great success! Within the first few bites, Jack was having great lip closure on the spoon, really good mechanics and organizing of the food in his mouth, swallowing and enjoying his meal! And the very, very best part! He showed off his Mr Ma Goo, or Elmer Fudd, impression to Dr Elaine! It could also be called the Toothless Little Old Man impression, but the point is that after swallowing, he repeatedly kept his lips together and his mouth closed. Completely. With his tongue inside! Two of my favorite people from the ART were here today, Miss KH and Miss BC and the noise and praise and celebration going on while we giggled over Jack's success even infected them! At least twice while they were completing paperwork, I glanced over to see them both watching Jack's every bite, enrapt. These gals love My Puppy Pie and they were clearly very pleased with his success too.

I feel like crap on a cracker that I was rushing Jack's oral motor maneuvers to the extent that he wasn't benefiting from the intent. I wasn't rushing to get the exercises done. I know the process takes some time and I always start out with each tool laid out at hand. We progress through each tool with fun and cheery talk and move on to the next in the same amount of time as always. The preparation to eat only takes about eight minutes. What is there to rush? I was just moving too quickly with each individual maneuver inside his mouth. And the more poorly he did, the more determined I became. Poor Jack. I'm really kicking myself over this. I know that if this is the biggest mistake I make in his life, he'll be one lucky kid. What hurts me is that he gets stuff, like any other baby. And I hope he wasn't bewildered by his Mommy. I hope he didn't feel my disappointment, because truly, my frustration was not with him, but rather for my failure to figure out what to do. Jack, your Mommy loves you deeply. She's just stupid sometimes. And she hopes she didn't hurt your mouth.

So tomorrow is our much awaited modified barium swallow study. Nine am. Dr Elaine is coming with us! Wish us luck!

I have new pictures to post...tomorrow.

Sunday, September 26, 2010

Another Night...

...and no work. It's gotten way past scary. No one is hiring veteran specialty nurses. They're all hiring the cheaper and inexperienced new grads. My staffer Doris says it's because no one has the money to afford insurance, or partially covered elective surgeries, and those like me who have lost our benefits cannot afford a simple trip to the doctor, much less to the hospital. The hospitals are getting less money and they are paying their staff less. I'm grateful that the kids are all insured. I've always had an amazingly good health plan, free from my employer, right up until I couldn't get my required minimum hours. COBRA is so expensive that it's prohibitive. If I could afford COBRA, I could probably afford to stay home and never work again. The Beloved's health plan sucks and his deductible is high, but he has it. Doris says that her NICU nurses are also hurting for work in numbers that she's never seen. She says the reason for this is that the majority of NICU babies here in this area are Hispanic. A lot of illegal aliens are having their babies at home, so they won't be registered as US citizens. I do know of one friend of a friend who chose to take her US born baby back to Nicaragua with her when she was deported. The only other choice was to leave her newborn behind with family that had been naturalized. While I absolutely abhor our open borders and what anchor babies alone have done to the economy of our country, it seems that our open borders are creating a double edged sword for the very people it's purported to have compassion for. I cannot imagine being in the position of having even an easy labor and normal delivery at home, away from medical assistance, all for the sake of flying under the radar. The risk to both mother and infant just boggles my mind. As a nurse it's a very disturbing trend. As a parent needing to contribute to the family income, the lack of work is extremely disturbing. I've always thought that a career in nursing was a guarantee of employment, however as the cancer of socialism sinks it's teeth deeper into the flesh of America's soft underbelly, it's only going to get worse. I have to ask people if this is the "Hope and Change" they were looking for.

He Loves The Girlie's Hat!

Does anyone else hear cabaret music? Liza, is that you?


Conversations With the Beloved

Upon arriving home from work the other night; setting: living room, The Beloved stands behind my shoulder while reaching around to rub Willie's head while I hold him in my arms

TB: We love him, don't we?
ME: Yes.
TB: Are you glad we had him?
ME: Yes. Definitely. (Pause while Willie giggles at his Daddy) Are you?
TB: Yeah. (Pause) I'm glad we had him. He's a good baby! He's the best baby!
(And The Beloved lifts Willie over my head and goes off to play.)

Saturday morning; setting: living room, Willie is playing on the floor, The Beloved is on the couch, I'm in my glider

TB: Man! He's getting big! Look at how huge he's getting!
ME: He's not that big. He's growing, but he's still really little.
TB: No he's not! He's getting huge! Look at how long he's getting.
ME: He's still in the 1st and 3rd percentiles for height and weight.
TB: So what does that mean?
ME: Same as it did the last time I explained it. 97 male babies the same age weigh more than he does. 99 male babies the same age are longer than he is.
TB: Well, what are their weights? How long are all these other babies? I want all of their measurements before I'll believe you. Who does the measuring? Is it always the same person? And what about the scale? Is it always the same scale? Were they all measured and weighed on the same day? You don't know, do you? You talk a lot of smack but you don't have the facts to back you up! Don't listen to her, Baby Head. Your Mom's talkin' smack about you again.
ME: The only facts are that he's in the 1st and 3rd percentiles.
TB: Statistics can be skewed to show whatever the person taking the statistics wants them to show.
ME: It's not statistics, it's percentiles. You know, as in per cent? And how is Willie's growth suddenly a conspiracy to skew the facts?
TB: How should I know? Who knows what motivates these experts?
ME: Okay. Let's try this. What size does the tag say that outfit is?
TB: (Fumbling to flip Willie over and read the tag without actually picking Willie up or getting down onto the floor) Looks like...3-6 months.
ME: And how old is he?
TB: Um...10 months? Is that right? Yeah, 10 months.
ME: 10 1/2. Most babies are well into 12 month size clothing at 6 months.
TB: (Scooping Willie up from the floor) Don't listen to her, Baby Head. I don't believe any of that crap she's saying! C'mon Baby Head. Let's go in the bedroom and see if we can find Sponge Bob on TV. You still like Sponge Bob, right?
(And off they go down the hallway.)

On the way home from the DSALA New Families Bar-B-Que; setting: the van
TB: Did you have fun?
ME: Yeah. It was nice to see everyone again and meet new people. Did you have fun?
TB: Yeah. I'm glad we went. Our Baby was funny. I don't think he's going to be as bad off as we were thinking (As he was thinking). A lot of those other babies were sleepy, but Our Baby was ready to go join the party!
ME: What do you mean?
TB: Well, those other babies, they just kinda wanted their Moms while you guys talked, but Our Baby wanted to join in the conversation. He wouldn't shut up! Every time any one new came over to us he got all vocal and animated and wanted them to pick him up! I think he wanted to see if they had brought him any food! Or if they would let him pull their hair!

...and later on the trip home...
TB: So how many times do we get to go to this thing before Baby Head gets kicked out? (This from the guy who refused to go with me last year)
ME: Well, we can go until he turns 3. Then we move to the Reunion Potluck held the next day.
TB: Oh! So he will graduate! Well, he's not even 1 yet, so we can go for three more years! We can still go when he's 2 1/2, right?

Technical Difficulties...

My monitor keeps alternating colors. It seems to happen the most when the Jax-Snax kicks his feet onto the slider for the keyboard, but it may just be that I need to replace the monitor. And that won't happen for a while due to the coffers being empty at the moment. So...If I don't post for a while...please pay homage to the monitor gods that mine either snaps out of it or gets magically replaced. Cuz I cannot tolerate the psychedelic thing going on here...kinda like strobes...makes me want to have a seizure.

Saturday, September 25, 2010

Friday, September 24, 2010

Playing With Daddy!



"You get my nose, I've got your hair!"

Twilah

The Girlie received this kitty from Grammy years ago and has slept with it every night since! Now Jack loves it. Grammy, if you're reading, can you find another Twilah?








Rolling, Rolling, Rolling...

Yes, there are pictures, but first, some mindless drivel. Some people call it "train-of-thought." I believe in calling a spade a spade. It's drivel.

For as long as I've had breath, I've wanted babies. Anyone who knows me knows that I came out of the womb wanting my own babies. And since I've always wanted babies, I've always been a sponge for information about babies. And I remember long, long ago, long before we were inductees to the T-21 Hall of Fame, reading about and hearing people tell stories about their babies who preferred rolling every where to crawling. They were always written about and spoken about with affectionate humor, but I still thought it was an anomaly that a baby wouldn't crawl. I mean seriously, it's a baby for crying out loud - it should crawl! I don't know why I am averse to babies who roll. But I am. Don't ask me why. Like I said, I don't know. And it probably wouldn't matter if I did know. Because, this being the case, Jack of course, has taken to rolling everywhere he wants to go. Yep. You got it. Rolling. Not crawling. Rolling. So there you have it. He rolls. He's a roller. And roll he does!

I dutifully put him into tummy time with several noisy, attractive, favorite toys surrounding him, placed just out of reach - just like his OT and PT tell me to - to stimulate his desire to reach for them, and thus be motivated to inch forward and eventually to crawl.

This is what Jack does instead...
Which way will I go first? Upon which toy will I bestow this morning's first globs of slobber?

Ahhh, to the left!

First the wind-up, and over I go!

It looks like the piano wins!

Now where to?

Ah...the musical shape sorter is up next!

Next some fun with the burp cloth...

...burpy cloth peek-a-boo!

Now for a visit with my doggy Sophie!

And now let's go see Princess!

Hi Princess! Are you sleeping in there? Do you want to come out to play? Please? Okay, maybe later!

Ohhhh, I love my tambourine!

It's jingly...

...jangly...

...fun!

And I can wear it on my face!

Alas, the stars stand alone. "Don't worry stars, I will catch up with you later!"

Thursday, September 23, 2010

Catfish With Ketchup


Catfish With Ketchup, otherwise known as Josie, is back in the hopspittle! Go see her here and send some encouragement to her parents! And keep reading to find out why her Aunt Leanne gave her such a cute nick-name!

Wednesday, September 22, 2010

Turkey






Turkey, was not a big hit! It surprised me because he loved the chicken so much! I didn't think they were really much different in flavor, but apparently they are!

Laurie from JBA is back! She called last week to let us know that RC had funded, so she would be seeing us again! Jack clearly recognized his friend and was full of smiles to see her! She had this funky little thing with soft plastic "hairs" in red, yellow and orange that vibrated and flashed lights when touched. Laurie said many children look at it and say, "Oh no. I'm not touching that!" But Jack loved it! He was quite happy to entertain himself with it while Laurie and I chatted at the end of the session.

He's got a new sound these days, It's "Ahk! Ahk! Ahk!" with a sharp ending. It's like he's trying to fake cry, or threaten to fake cry, but he's always full of big fat drooly smiles when he makes that sound.