It Still Fits!

Will is busily cracking up at Eeyore. And the Christmas outfit he wore 5 months ago still fits!
Here he is all tuckered out and tucked in for the night. I just adore that he sucks his thumb!

Multiple Choice Question...

This is what happens when:

a) The Little Baby Squee who just got out of the hospital the day before suddenly gets a fever, a wet cough, expiratory wheezes over all lobes front and back, rhonchi in the upper right posterior lobe, grunting respirations, nasal flaring and sternal retractions with blue feet and hands, then throws up dinner all over the car during the mad dash through darkened streets on the return trip to the Emergency Room

b) When said Little Baby Squee suddenly becomes as stable and comfy as you please within minutes of being bum-rushed through the ER doors by his crazed and sleep deprived Mother, dragging sleepy eyed Olders in tow

c) When said sleep deprived Mother and deliriously silly Older Sister get bored while waiting for the pediatric on call doctor to come see the suddenly quite stable Little Baby Squee

d) The Big Brother, aka The Podster, is asleep on the end of the gurney, having been yanked from a sound sleep to accompany said Squee, Older Sister and crazed Mother on the mad dash through darkened streets, and is therefore unable to render rescuing aid

e) All of the above


Turns out it's neither a cinnamon roll or a tortellini...it's been a pork chop or a side of bacon all along!

And I'll leave you with that. I promise I will post eventually on our adventures in the hospital...if any of these kids will just cut me a break FOR FIVE MINUTES!!! I'll post on that too! Eventually.

I want to post....

...really I do! But I'm busy holding my Little Squee!

Oy!

Do I have to speak Yiddish to use this expression? Am I even spelling it right? Or is it actually Oy vay? I might be mixing up cultures here. But I don't know.

We're home. Am I paranoid? You bet! Will I get any more sleep than I got in the hospital? Doubtful. I'll detail our adventure when I can make sense. For now, let me just say, I am a slave to technology. I love that Will was monitored in the hospital and I hate it that he isn't now. So despite the headache that was going on day 6 before our stay at the hopspittle, and still persists, I do believe I'll be sitting up all night watching Will.

For now here's a picture with Heather, one of the Autism Response Team service providers that work with our Olders.And here's Willie, happily getting reacquainted with Piglet, Tigger, Eeyore and Winnie!
His poor little face didn't look nearly so bad earlier, but as the day has worn into evening, the places where the nurses put the opsite on his face to hold the nasal cannula on have gotten more and more red. I'll post pictures tomorrow where you can actually see the tiny little white line of cheek that was spared by the protection of the tubing. But I am not complaining. He's home. He's not in the hospital struggling for life. He's not intubated on a ventilator. He's well. It's his Mommy who needs to get over this.

But really, it begs the question, since he's our first ever to be hospitalized, will there be more of these trips? Maybe. But for now he is home. He's playing in his crib. And my little Piglet tipped the scales today at 14 pounds, 10 ounces. No one told him he's supposed to get scrawny when he's sick! Thanks for all the prayers! I promise to post tomorrow on the great news we got after his long awaited echocardiogram!

We're home!

We're home! Yeah! I will post later.

Dontcha Hate Being Right Sometimes?

This will be a quick post. Jack was admitted to the hospital yesterday afternoon with right upper lobe pneumonia. He got very sick over a matter of two hours. The pediatrician who saw him in the ER would only say that it could be bacterial or aspiration pneumonia, but the ped who rounded last night said that based on the inflammation and infiltration pattern, it looked to him like aspiration.

Jack is getting IV fluids and antibiotics, a small amount of oxygen and routine breathing treatments. He slept well and ate well. He didn't wake to eat before I had to leave him to get The Littles off to school this morning, but he was sleeping comfortably. I'm going to get about two hours sleep before i get the kids up for school. It will not feel right that Jack isn't in his cradle next to me.

Leukemia Drive

The Peach came home from school Friday with a box to collect loose change to help children with Leukemia and other childhood cancers. It made it personal for her to be able to show her how many of "our" children in our Ds "village" are fighting this dreaded disease.It made it much more personal to her when I explained that Baby William is at a much higher risk than either herself or Podifer to develop this disease. From what she said, I feel a class presentation coming on...I have emailed her teacher to set it up, and I will let you know how it goes! Maybe Jack will be visiting a fifth grade class room soon...

The Missing Links...

Snorkie's plastic links went missing a few days ago......he is really happy that I found them!
I think he's keeping his eyes closed...
...so he doesn't poke them out!

Back We Go To the Optometrist!

The Girlie started with some purple frames but hey were huge on her face. She really liked them though. And then the nice lady helping us popped these smaller ones on her noggin and she was sure, "These are the ones, Mom. I like these!" She is just so thrilled with this whole process!
The Poddest of Pods also initially picked out some very huge, very Harry Potter frames. And again, The Nice Lady to the rescue. She suggested these and he was sold. I hope he still thinks they're as cool when he has to wear them all of the time.

So the specifics...I didn't get them. The gal says both kids need correction for distance. Something about astigmatism. But she only had the prescriptions in front of her and didn't know how to interpret them to say how good or bad their vision is. So, tomorrow I will go pick up their actual records and see if I can get someone in the office to decipher it for me!

Now, Jack doesn't go see the specialist until June 15th, but there were some ridiculously tiny glasses sitting there, so I popped them on his noggin for a picture! And you know he immediately moved! I have to say this is still just the cutest thing I've seen in a while!
Even as bitsy as those frames were, they still dwarfed his little face! I asked about devices to keep glasses on a baby and The Nice Lady handed me a pair of doll sized glasses, made by Fisher-Price, with ear loops, and informed me that I'd have to pay for those out of pocket. Doesn't it figure? Ah well. Jack looked darling in those too, and they fit his face, but you know he pulled them right off for a closer look! Dang. No picture!

Now the bad news, at least for The Girlie. It takes 4-6 weeks for delivery of the glasses. She was bummed, but I told her I'd print a picture for her to show her friends and she was happy with that!

Willie is 6 Months Old

William is 6 months old today! To celebrate he has a new nick-name from The Dear Daddy...he is now The Googler Elf! And he has moved up to the bigger diaper. He ran out of size 1-2 just in time to fit into the size 3!
Since I've taken so many pictures of him against this pillow, it seems a reliable measuring stick!
Still love those feet!
This is another place I frequently prop him, but he's ready to bust out of this spot! He's going for his toes!

About Those Glasses...

Okay, so I've been trying not to worry too much about how serious Jack's "small optic nerves and disks" might be by trying to picture how danged cute he's going to look in glasses. So today kinda side swiped-me.

I've noticed for about the last month that if The Girlie is sitting on the couch across the room, and Willie is on the floor between us, she will ask "What?" if I look over to check on Willie. Same question if I look at The Pod-Pie at the other end of the couch. Or down the hall. Or pretty much anywhere in her general direction. So I conducted a highly scientific test. Don't try this at home, I am a professional. I looked right at her, past her, down at Jack, at the picture above the couch, down the hall, and back at her. Followed each time with "Where am I looking?" With the exception of the one time she answered, "Why do you keep asking me that?" her answers were all the same. "At me." I asked if her vision was ever blurry. After I explained what that meant, she said "Sometimes." So I asked if she had any trouble reading what the teacher wrote on the board at school. To which I got eye rolling. Yeah. Already. "Mom, you know I sit in the front row." Okay then. Stupid me. But I persisted. "So do you ever have trouble reading what she writes?" And it turns out, "Sometimes. Well. A lot actually. But not always." I can't wait til she's 16 and knows everything!

Since I was taking her to see the Tater Tot's eye doctor, I thought I might as well get Podifer's eyes checked too. En route to the 3:00 appointment, for which we were twenty minutes early, The Girlie asks, "Mom, do you think I'll get glasses?" I said it was highly likely and asked how she'd feel about wearing glasses. "Good." After a few minutes she started listing the girls in her class who wear glasses. And then every few minutes she'd get animated and add a name to the list. I never bothered to ask Pod-Pie how he'd feel about wearing glasses. His eyes are fine. They both read well. "Mom? Do you think they'll give me glasses today?" And I said I didn't know, that they might have to order them special for her eyes. I don't know about these things. I didn't need glasses until after I'd hit 40 and you don't have to order them from the rack at Wal-Mart or when you find some cute ones in the dollar bin at Joanne's Fabrics!

So while I fill out endless reams of paperwork, there's a kid there named Sam, and he looks to be about four years old. I know his name is Sam because his Mother uttered it (and often barked it) about every twenty seconds while little Sam bounced off the walls, the chairs, the floor, the coffee table. It took me right back to My Pod Pie and the early days when containing his hyper-kinetic spinning mass of energy was like trying to put out the sun by spitting into the sky. Sam's Mother met my eye. I tried to give her my best "I-know, I've-been-there" smile. And I gave a big fat smile to Sam as he whirled by. His Mom looked at me funny so I inclined my head toward The Pod and nodded. He was busy doing his math homework and didn't see me nod. Sam's Mom studied The Pod for a few minutes and began a tiny little up curl to her lips as she watched him. Then Sam's name was called.

Then our names were called. They both did poorly enough with the simple eye charts that they were advanced to the next round and some sort of amazing machine took computerized pictures of their eyes. And The Girlie wants to know, "Do I get my glasses now?" Next we went to a waiting room down the hall where Sam's Mom looked relieved to have been put in an empty exam room while he waited his turn. When our names were called, The Girlie was first up to sit at a machine with dials and round eye pieces and twisty little gadgets while she looked at numbers and letters projected onto a wall. And the guy doing the exam asked why she hadn't brought her glasses. Then he whirled around to me, busily bouncing Jack in the corner by the door so I could keep an eye on The Middle Little, to confirm that No, she's never worn glasses. How does she do in school, he asks. "Good" I say. "Amazing," he says. "So do I get my glasses now?" and he tells her she will see the doctor again to decide that. Sad face as she takes her chair in the hallway. Next up is The Pod. He seems to be doing much better I think because he can read much smaller letters and the guy doing the exams does not ask any incredulous questions. With some flips of the dials and turns of the twisty gadgets, he can read the few letters and numbers he missed. Okay, so collect $200.00 and pass Go, down the hall to the next doctor. This doc seems to think that The Girlie's vision is so poor because she's taking such high doses of a blood pressure med. No, she isn't, and I corrected the first doctor's sloppy writing. "Oh, okay then. I see what this is," she says. So she consults the notes from everyone we've seen so far and asks "She's really never had glasses?" I tell her that The Girlie has only ever had visual screenings at the ped's office and she'd always done fine, and I review what's been happening in the last month. So she checks The Girlie's vision with another funky machine with a bunch of other gadgets. She says to The Girlie, "Oh your eyes are very, very healthy and you're going to see much better with your new glasses!" And even from where I am standing across the darkened room, I can see the huge smile spread across My Girlie's face! What a kid! Next up is My Middle Little. I tell the doc she may have to give him a directive and then wait a beat for him to respond. Apparently she noted his meds too, because she says, "Oh he'll do fine. My son is autistic too." And he did great, and she also told him how healthy his eyes are and that he will see much better with his new glasses! Hmmm....he must have been as surprised as I was because for once he was speechless.

Okay...so by now it's 5:30 and we are ushered across the hall to the actual optometrist's office. And there's little Sam having a screaming fit on the floor while his Mother is clearly too done in from the day's events to immediately respond or to meet the eyes of the three other patients ahead of us in line. So I made an executive decision. We're coming back in the morning. First thing in the morning because they don't give appointments. My cheerful Little Bunny is ready to be done with all this trekking up and down the halls, the kids are hungry and I'm starving. I gave Sam's Mom my warmest smile and we got the heck out Dodge.

So I cannot tell you how bad their eyes are or what specific conditions they have. We will find that out tomorrow!

Mother's Day

Last year at this time, Mother's Day, I was 10 weeks pregnant with our Little Bonus Boy! I'd love to say that I had a journal posting to look back on, that I'd written flowing lines of flowery prose about the wonder of spending my days in misty-eyed euphoria as I waited for the magical harps and the ethereous singing from the heavens as our baby arrived into the world in a cloud of sheer bliss. This is the part where you imagine that horrible sound of a needle skittering across your favorite LP, but no one knows what those are anymore! Just imagine screeching tires and the commensurate odor of burning tire rubber instead! The simple fact is that I don't. I looked back and I didn't even write a journal entry on that day last year.
I was too afraid.

What I remember is being scared...of so many things. Mostly that this baby would follow Hannah to Heaven before we got to know him or her. That as each week passed and the baby was still fine, I'd come to feel secure only to have it end again so suddenly. That the baby would have chromosomal abnormalities. That the thing I feared so deeply, the thing that I already knew deep in my soul, would eventually be spoken out loud, that the fear would become words and the words a reality, and the reality our baby. I was so afraid of losing this baby, in whichever form loss was to take.

However, I have a different perspective now, having survived what can only be described as a hellish physically tortured pregnancy, and don't even get me started on the emotions. If you're here as a fellow Mom to a baby with extra chromosomes, you already know the torment of the unknown. If you're here because you've just gotten the news about that little extra bit of DNA, again, you are living the torment and fear and I don't need to tell you! But what you might need to know, what someone does need to tell all of you Ladies in Waiting, I am quite certain that the angels in Heaven did indeed sing while Will took his first breaths!

I am so, so very sorry that I ever cried tears that Will would have Down syndrome. Of course I needed to do that, and it was a natural process. It was necessary to go through all of that hurt, anger, sadness, disappointment. That outright despair. It was cleansing. And what it left was fear. Terror. After all, we'd gotten tragic news. At this late stage of our lives we were anticipating a child with major health issues. Surgeries. Therapies. Disabilities. Differences. Everyone expressed such sorrow. Such regret. What were we to do, they asked. Our lives would never be the same, they said. But from where I sit now, watching my sweet little darling boy sitting upright in his swing to grab at toys...well I wish I could have fast forwarded to just one moment of this Mother's Day.

To get just a glimpse of this darling, happy, healthy and delightful little baby. To see how normal our lives still are. And how mundane unloading the dishwasher still is. And how I still despise dusting. And folding the ginormous load of white clothes still makes me cringe. And the happy smile I still get when my Middle Little hops off the bus bouncing. Of how I still feel complete when My Girlie arrives from her bus, twenty minutes after The Middle. Of how The Dear Daddy's arrival home is still one of the best parts of the day. Of how the roses in the front yard still bloom just as red. Of how declarations of love from My Middle Little are still so sincere. There are some things that are different ever since Will. We have a few more doctors appointments and we have various services like OT, PT, EI and SLP. The major things that have changed in our lives are quite significant. For instance...

...I start my days with a tiny being cooing in the cradle next to me. My Girlie gets a live baby doll to play with. Both of My Olders get to have and take pride in some small amount of responsibility for someone smaller than themselves. The Dear Daddy has another Little to look forward to at the end of the day. We all have this new little life to celebrate and enjoy so very much. The Littles spend their weekends with their ears perked for the first sign that Will is waking from a nap. The Dear Daddy does not...he just goes and picks him up even if he's asleep, and then pesters him until he's awake enough to play! There's a little less room in the cargo hatch because a stroller now occupies that space. Soon we will take down a baby swing and then add a high chair to the dining room. And while it's all so very normal, so common place with a new baby in the house, it is singularly extraordinary as well. It is phenomenal. It is inordinate. And it's ours. All ours. Ever since Will.

And now there is One More Little to add to the Pile o' Puppies...
Now that's what I call a dog pile!
Yes, that is a deadly pit bull on the bottom of the pile!
If The Girlie doesn't plop down on top of Sophie, she worms her way behind The Girlie's back and then lays down behind her and then wiggles until she is literally under her.
We've had to stop letting Princess and Sophie out at the same time because it's an all out free for all to see which one of them can lick Jack's head sloppy wet first!
Princess is happy to snuggle up with her Pod-Pie.

Dear Patti...

Hi Patti...
It's Willie
You know...Jackie Boy
My Mom was really happy that you asked for more pictures of me!
She felt all warm and squishy about that!
So she took some. A bunch really.
But I didn't smile.

This is my sister.

Her name is The Girlie.

She catches me when I wiggle.

I love her This Much!

I even love her with my eyes closed...

...and while I'm sliding sideways!

Next my Mom tried this.

But I still wouldn't smile.

When I did give her a tiny smile she missed it. She said something about the "danged camera flash" not working right.

I got bored and decided to sing instead. Mom said it was sweet but she couldn't catch that on film.

But I like to sing, especially to the picture over the couch!

So she gave up on that approach. Did you see how pretty I was sitting up?

I'm pretending to sleep so she'll leave me alone.

But she moved me to the floor instead. So I gave her a tiny smile...

But that was the last one!

She tried to enlist the troops.

But I wasn't having it.

That's my big brother. His name is Pod-Pie!

This is where I give up and go to sleep.

When my Daddy gets home it's a different story.

I love to play with my Daddy!

He does his own brand of PT with me, gently swinging me back and forth while I hold my head up.

Then I get all giggly and curl my arms and legs up because it's just so fun!

When Mommy joins in it's a real game! When I hear her voice I drop my head back and Daddy swings me to her for a smootch right on the nose.

Then I get a big goofy grin, swing back, repeat.
...but Mommy was too busy smootchin' me to take the picture!

I get all goofy when my Daddy lifts me up to kiss me too! His mustache tickles my head!

And I love to be upside down! There were more of these grins but my arms were in the way!

Mommy used to have a something called a coniption fit when My Daddy did this with me, even though he still only does it for a minute at a time. I holler for more when he puts me down!

But usually when he puts me down he tickles my chubby legs!

That makes me laugh really hard and I get all wiggly!

Then it's time for more Daddy PT. This is the aerial view. Can you see how strong my neck is getting?

Then back to the floor for more leg tickling!

Hey Daddy! Lets hang upside down again!

Yeah! That's the ticket!

Hello Domino's? Yes, I'd like an extra-extra large, thin crust, easy sauce, extra cheese with sausage and pepperoni, hold the anchovies, please! It's for me and My Daddy!

Hey Dad, tell this guy your credit card number!

Yeah! We're getting pizza!

It's going to be this big!

Let's play until the pizza gets here!

I love it when Daddy swoops me into the air to play airplane!

I'm laughing reeaally hard in this picture!

This is what happens when Daddy stops playing airplane with me. It makes me really sad.

So he gets down on the floor to play with me!

And he pretends to holler when I pull his mustache with my little grabbers!

Then he helps me exercise my little chubbies some more...

...and I find this really funny!

And this is how I look, all tuckered out, smiling in my sleep, after a fun time playing with My Daddy!

Bye Patti! Thank you for looking at my pictures! (Mom says there were 47 of them even though she took over 120 today! I'm not sure though because I haven't learned how to count yet!)

Love, Willie