...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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Wednesday, May 5, 2010

The New Pediatrician

This post is going to be long and ugly. You might just want to skip the text and go right to the picture of Jack and then back away from your computer - very slowly.

Jack is 25 weeks old tomorrow, 6 months in 1 week! Today he weighed in at 13 pounds and 13 ounces, bare. He's 24 3/4" and his head circumference is 42.5 cm. He's gained 2 pounds and 10 ounces, plus 1.5 inches in length and 1.25 cm head circumference since March 30th! What are his percentiles? Again, let me refer you to my previous comments...I don't care! I didn't even ask. He's healthy and growing and happy and you just can't find that on a growth chart!

Today we saw his new maybe-very-soon-to-be-old pediatrician. While I was happy that I knew exactly where the office was located, I was really bummed about the location. Rumor has it that any patients who have family in the aero-space industry rely on NASA's very own satellites to locate a parking space. It's that bad. Our appointment was for 10:45 and they wanted us there 15 minutes early to fill out forms. So...that had Will and I trolling the lot at ten am. Eventually we lucked out with a space in the first row from the building. Few things can provide that particular childish thrill of scoring a good parking spot! So in we got with five minutes to spare to be 15 minutes early for our 10:45 appointment.

The office was the size of a smashed cracker box, but there were two chairs open. Right in front of where they let people in and out of the office proper, directly adjacent to the exit door. Had I known this I would not have brought Jack's stroller. The next hour saw me jockeying his stroller first this way to let people out, and then that way so they could get around us to the exit. But, we were entertained by a cute little boy named Douglas, who while fascinated with Jack, was quick to say "Because of germs" when I said gently, "Oh no, don't touch the baby's hands!" Douglas and Jack spent a good amount of time giggling at each other.

So we finally got called in. The medical assistant weighed and measured Willie. And took his temperature. And when she left, I weighed and measured him again to get accurate measurements. She'd shaved a half ounce off of his weight and added 1/2" to his length. Her writing was sloppy enough that I easily corrected it in his record.

I was initially happy with the doctor. He'd asked why we were here today. I said that it was Willie's 6 month check, he had been assigned as his new ped, and then explained the need for the referral for the echo. He asked "How do we know this baby has Down syndrome? What tests did you have done?" I said I'd had an amnio at 16 weeks and that we'd had his karyotype, plain old trisomy 21, not translocation or mosaicism. He listened and was impressed that I'd brought Will's birth records. However, he wanted to keep them until the office staff had time to copy them and then have me return to pick them up. I referred him to the nightmare of a parking lot and said he could not keep my copies. He said that his staff was too busy to copy them at the moment, if he could just have me return sometime tomorrow...so I offered to stand at his copy machine and make whatever copies he wanted. Somehow he found someone to copy the four sheets he was interested in.

I thought his exam was thorough and complete. He said Jack didn't look like he had Down syndrome. I showed him the palmar creases. I assured him that I could see it and found him beautiful. And he answered some delicate questions that I don't need to write about here. He said he would refer us to the cardiologist. He also listened to my concerns about Willie going to the big children's hospital because the opthomologist who referred him there was also acting on a referral from the other ped. "Was it Dr SS? She's the only one in town who sees babies. No problem, we'll just get her report and then I'll authorize the referral." Great. So far, so good!

I had two more concerns but he was clearly reaching for the door. I was answering a question he'd had while he was walking out so I actually had to hold my finger up to stop him. "There are two other matters." First, Will has developed a wet congested cough mid way through each bottle that persists for about 30 minutes after, despite thorough burping and keeping him upright for 30 minutes. I was concerned that he might be aspirating small amounts of formula. His answer did not please me. He said his lungs sounded clear so it wasn't an issue. So I said that babies with Ds often have weaker oral muscles and structures of the mouth and throat, including weaker valves and sphincters in the stomach. I asked for a swallow study. He said to feed him 3 ounces every two hours, and if that didn't solve the problem he would consider looking further into it. I argued that small amounts of aspirate, or worse yet, GERD were not going to be audible to auscultation. He said, "Let's try this first." And he left.

So being annoyed with that, I didn't even realize that I'd planned on asking for a thyroid function test until I was out at the desk and saw blank lab requisitions sitting there. The gal at the desk glanced at me a few times but kept busy with what she was doing. After a good 10 minutes (yes I counted!) she said with an annoyed voice, "Did you need something?" I said, "Well yes, actually, I do. That's why I've been standing here waiting for you to help me. When are we supposed to come back? Don't we need a follow up appointment? Do you have the forms I'm supposed to sign to request medical records from Will's opthomologist? And do I contact his cardiologist now or wait for them to call me? Is there a note from the doctor authorizing that consult? Oh yes, the doctor left before I could ask him for Will's 6 month thyroid screen, can we go back to the exam room and wait for him?" I said it all in a pleasant voice with a smile plastered on my face, but it was clear to her that yes, I did indeed need something. And by the way, don't speak to me that way again. Thank you. Now granted I do not look my best these days. I'm not back to my skinny clothes yet which leaves my boating/maternity clothes. I have faith that I do indeed still own a few cosmetics, but having not laid eyes on my cosmetic box in months, I'm just not sure. My hair is usually back in a pony and if I've gotten to comb it that day and brush my teeth, I feel pampered. So I think the gal behind the desk may have been expecting a much less articulate reply to her snippy, rhetorical question.

Anyway, I received the papers I needed to fill out, but the gal thought I also had a Rolodex in my head and that I'd be able to provide her with Will's opthomologist's fax number along with her address and phone number. I said that I didn't have that information, but since the doctor was aware of Dr SS, perhaps there was a physician' s phone book? So she went off to ask Rhonda, who had initially helped me get Will's appointment so quickly. She came out and asked me why I wanted all that information. I gestured her to the office gal, who said "She doesn't know the doctor's fax number or anything." So, Rhonda, (I'm really starting to like Rhonda!) says to the girl,"Honey you don't ask the patient for that information. They aren't going to send the fax. We are." And she turned to me and said "We'll take care of this!" with a pat to my arm. So while I had her attention, I explained that the doctor had bum rushed us out of the exam room and asked about the thyroid screen. She chuckled and said the doctor had a lunch date and was trying to get out of there, but promised she would ask him when he came back in and would call me by the afternoon.

Needless to say, by the time we left there at 12:30, having failed to get the swallow study or the thyroid screen, or to establish rapport with a doctor I could place my trust in, I was out of sorts. I'll need to order more sorts. And when I got to my van to discover a giant white SUV parked so close we were now sharing tire rubber, I was even more unhappy. I have nothing against SUV's. I wish we could afford the gas for one. But seriously, there wasn't 6 inches between them. I managed to load Will in through the passenger side with much grunting and lifting of his 13 pounds and 13 ounces of occupied car seat over the bench seat, but there was no way I could squeeze between the SUV and my door, even if I had been wearing my skinny clothes. Hmmm. Options. I got his stroller folded up and loaded into the back. And then I crawled in on the passenger side cargo door, thinking it was better to do a spread from the middle seat to the driver's seat than to do the splits from the passenger seat. And as I was negotiating backing up nearly halfway now without taking out the SUV's side panel, what do I see in my side view mirror, but someone dash behind my van shouting at me. Since she came from my right, and there was a tiny little sub-compact parked there, I can only assume that she could easily see a large red van sticking almost half way out of the slot and still moving, long before she'd even gotten close to me. Especially against the backdrop of the giant white SUV. Which she promptly leapt into, started the motor, threw into gear and started reversing. Right toward my van. The drivers side cargo door. Behind which sat Will in his car seat. I laid on the horn. Which brought more shouting and now waving from her. What the heck? Have I just been dropped into the Twilight Zone? So she honks back. She motions for me to move it! I guess she'd thought that my van had somehow magically disappeared in the time it took her to perform her leap-in-at-breakneck-speed-key-the-engine-and-throw-it-in-reverse-and-gun-the-motor maneuver. So I motion for her to pull forward, seeing as how she's all but against my van again, only now at a narrower angle. She thrusts her thumb back wards again and shouts "Move!" So I roll down my window, stick my head out the window to see just how much room I have before I either take off her bumper, or more likely, her bumper leaves a furrow in my side panel. I gesture for her to look. Which really, she can't. She's 20 feet off the ground and has the premium tinted windows. So she gives me the reverse thumb thrust again. So I throw up my hands in defeat, lean back in my seat, and cross my arms over my chest. And then she decided to pull forward. And I was right back where I started from, and that is trying not to scrape the sides off of her zillion dollar SUV while backing out of the stall that she was now actually occupying with me now that she'd pulled forward. Good thing I'd resisted my second nature impulse to leave a nasty note on her car before I contorted myself into mine.

Since I have to drive past Wendy's anyway, and since it is lunchtime, and since deep fried and cheesy and dipped in something is the ultimate comfort food, and just because I darned well felt like I'd earned it by now, and I was STARVING, I decided to splurge a few dollars on drive thru. I continued to fume over our morning while I drove to Wendy's. I realize in retrospect that it was bizarre, but I was decidedly more annoyed than I should be. So I put a Bowling for Soup disk in the player and turned it up. No. Too noisy. They usually make me laugh. "I hope you like your two seater, no radio, key marks parallel to the pin stripes, windows broken, your T-tops stolen - now it's one of a kind. Thanks for the ride!" But today I was edgy. So I popped the disk out while I waited in line behind - another white SUV, but smaller than the crazy lady SUV. And waited. And waited some more. And about the third time the driver of the SUV sat motionless and let a car into the already long line, I popped the disk back in. Clearly I was not in The Twilight Zone, but in a galaxy far, far away, or maybe The Outer Limits. "Can you hear your radio? I bet you can't hear your radio, so you'll never know I wrote this song - for you. Sorry that your tires are flat. I know you really weren't expecting that. I guess I got a little carried away." Yeah maybe it was a Bowling for Soup day after all. About the time the white SUV finally committed to getting into line I was at my limit. But I was still hungry. Starving. And Jack was sleeping happily. And I had yet to figure out why I was so unnerved. So, I did the only logical thing to do, seeing that I was still the last one in line! and backed out of drive thru to go in and sit down to eat my meal. And by the way, a deep fried spicy crispy chicken breast sandwich with Swiss cheese and slathered in ranch dressing qualifies in all the required categories of savory comfort food. We'll cover dessert comfort foods at another time. And while I ate, people commented on Jack sleeping his his car seat, cooed over him, said how angelic he was, and I started to regroup my composure. I started to gain some perspective. I felt better. So much in fact, by the time we got home I was even able to get the child-safe cap off of the bottle of Valium. Just kidding. (No seriously - that cap really sticks sometimes!)

By afternoon, Rhonda did indeed call back. No, she didn't see the cardio referral noted anywhere. No, they had not faxed Dr SS yet. And since Jack's last thyroid screen was normal, there was no need to repeat it. Dang it! So I took a deep breath and explained again what I'd asked her to tell the doctor in the first place. Jack's only thyroid screen had been done at birth. He was due for the 6 month screen. He was eating a soy formula because he is lactose intolerant, and in some babies, especially babies with Ds, soy can interfere with thyroid function. And it is a frequent and common finding that babies with Ds have thyroid dysfunction anyway, and that I've taken to keeping Jack lightly dressed because he breaks out in a damp sweat when every one else is comfortable.

And I finally realize I've been so out of sorts because I think we've found yet another doctor who isn't going to treat Jack with the same medical prudence as another baby because Jack has Ds. The ped I'd disliked so much had said more than once, "Well he's got Down syndrome. What can you expect." It wasn't a heartless question - more of an ignorant statement.

So my plan is to wait until Jack is seen by the cardiologist and has had his echocardiogram finally and then go back to doctor shopping. Dang it all!

Post script: Rhonda called the next day. The referral to cardiology was already done. They had already received the optho report from Dr SS. And I can pick up Jack's lab orders for his thyroid screen anytime! Having a day between myself and that doctor's visit, I think I may give him one more chance before I switch pediatricians. We'll have to see.


Stephanie said...

First - Will is looking great!!! :) And I am sorry that you had to go through that. OK. Here is my best advice, #1. That stroller is useful - position it in front of the door (you know, just to get it out of the way) when the doctor comes in the next time. #2. Before the doctor lays a hand on him the next visit, don't ask, tell him to have a seat you need to have a talk. Remind him that Will is a baby first and if he is going to go dismissing things because of the DS, you will be looking for another doc - AND telling every special needs group in town why. #3. For future reference, he is not allowed to leave without answering all of your questions unless somebody is bleeding profusely or CPR is required. #4. This statements works wonders "My child will get the healthcare that he needs with you or in spite of you. You decide how difficult this will be from here on out."

Sending you hugs and prayers.

Steph and Christopher

Tracy said...

Oh Steph, you ROCK! I will be better prepared next time and I certainly will use your stroller trick! I plan to ask the doctor directly if he has much experience in treating babies with Down syndrome, as I have no intention of allowing my son to receive substandard care because he has an extra chromosome. If he says that he does have experience then I plan to hand him the NDSA guidelines and tell him that I want them followed. If he says he does not, then I will still hand him the guidelines to add to his chart and then say something more diplomatic about working together because I obviously have a vested interest in making sure the Jack receives what he needs without wasting funds and resources on things he doesn't need. I cannot wait to try that stroller trick!!!
I appreciate the prayers!
Love and Hugs, Tracy

Denise said...

You are a funny story teller!! I was hoping to get to bed but got sucked in to your story and now its late!!! How annoying about the white SUV!!! I think your plan is good about the Ped....give him one more chance. Ella's ped doesn't have a ton of experience with Ds but she is willing to learn things and that is ok with me.

To Love Endlessly said...

That's one heck of a story!!! I know I'd be shopping for a new doctor after that mess. 2 things, you want your doctor to take their time with you & show that they care AND not assume this or that because your kid has DS. Absolutely unacceptable! We need more pictures of sweet Will, there aren't enough in this post. :-)

Tracy said...

Denise - so long as my pain serves a purpose! No no, don't worry about me...LOL :)

And Patti - be careful what you ask for...a plan is hatching and a plot is afoot!