...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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Monday, March 21, 2011

This Month's Pedi Appointment

After Jack's last appointment and the new asthma diagnosis, we were told to come back in a month to check his pulmonary status. Which really, was fine with me so we could track his weight with the switch to soy milk. So, first up was that fight. At this pedi on February 18th, Jack weighed 20 pounds and 14 ounces. At his cardiology appointment on March 3rd, he weighed in at an even 21 pounds. Today he weighed 20 pounds and 4 ounces. He measured 29 1/4" but he'd lost 10 ounces. I informed the doctor that I had not switched him entirely to soy milk, that on my best judgement and the advice of Dr Elaine, his SLP, I was alternating soy milk with formula. He maintains that Jack needs to switch entirely to soy milk. I argued. He said there were more calories and grams of fat and protein in soy milk, to check the labels and I'd see for myself. Well, I already thought this was crap, otherwise, we'd be feeding our babies soy milk instead of formula when we can no longer provide breast milk. With the evidence in front of me in a 10 ounce weight loss, (which is really 12 ounces if you count the cardio weight!) when I got home I decided to take his advice and check the labels. It's easy to see why he might think that, even though he should know better. The nutrients listed on the soy milk are per eight ounce servings. The nutrients listed on the formula can are per 100 calorie servings. Duh. That's five ounces. And there are far more nutrients and grams of fat and protein in 8 ounces of formula. Why do I know this and his doctor doesn't? Crap! I wrote it all down on a piece of paper in neat little columns and compared formula to Traders Joe's organic soy milk, Wal-mart's Great Value organic soy milk, and even went into our local WIC to write down the nutrients in their brand of organic soy milk. I plan on rubbing his face in it when we go back in a month. We left that argument off with me refusing to change to full soy milk and stay on the alternating soy and formula and work like mad to get more solids into him. And I will quietly give soy milk in every third bottle instead of every other. Which brings us to his pulmonary status. I am so sick and tired of this doctor telling me that I am wrong and that I am not seeing what I am seeing. At last month's visit I asked for a refill on Jack's albuterol, because he was using it for a lot of wheezing at night. That got us the Q-Var inhaled steroid and a refill for the albuterol. At this visit when the doc asked if Jack wasn't doing better, I reported that no, in fact, he was having a greater number of wheezing episodes, particularly at night. Any of this sound familiar to any of you asthma Moms? Knowing that this doctor has a penchant for denying the obvious, I listened to Jack's lungs before he came into the exam room. He clearly had wheezing in the right lower and middle lobes, inspiratory and expiratory, as well as some rhonchorus sounds in the left mid and upper areas. The doc said he was clear. I said to listen again, and of course he refused. So I pulled my own stethoscope out and had another go at it. And I pointed and said Right there. Wheezes. And here and here. Rhonchi. His answer? "Those are not really there. They are referred sounds from somewhere else in the bronchial tree." Okay, yeah maybe, but doubtful, and even so, they are referred sounds from somewhere else inside my son's bronchial tree. So again with the arguing. I wanted nebulizer treatments for the wheezing at night. For the episodic wheezing I can hear from across the room at night. I finally wore him down and he ordered saline by nebulizer to help with his thick secretions while he's teething. And finally, while he was at it, he finally said I might as well give the albuterol by nebulizer too, and ordered it. So back we go in a month. The nebulizer arrived the next day with all the little saline bullets and albuterol liquid and another Q-Var. Jack's a happy camper. On the up-side, Dr Owen, Jack's cardiologist said that he still has the open holes, hopefully they will close by his next visit, he's doing great, come back in four months.

The pedi said he thought Jack might have a sinus infection and said that his right ear was slightly inflamed. I already knew that, because I have my own otoscope and found the ear inflammation last night, but if I'd brought it up myself instead of letting the doctor "find" it, sure as shootin' he would have denied the obvious. He prescribed Amoxicillan. I wanted Augmentin. He said no. I said Augmentin had done so well on his two previous infections. He said no. I said there's Amoxicillan and Clavulanate in Augmentin, why not go with what we know works? He said no. So we have Amoxicillan. And there you have it. Our doctor fun for March. NOT!


haveyouhadyourhugstoday said...

Hang in there! Jack looks ADORABLE! I can't believe he is that big already, 18 months! Wow! Good to check back in & see how he has been! ((HUGS)) Monica Crawford

Tracy said...

Good to hear from you! He's almost 17 months. He's growing too fast as it is...don't add any months! It was great talking to you on the phone!