Happy Pics from Birthday & Baptism

More pics later, but here's a few to make you smile:

Pancakes for Mikey

http://www.grantmeachance.com/

On June 17th, 2007 a sweet young boy named Mikey Cronvich died after being left in the car for three hours. He was to turn five years old on July 6th of this year and, although we never met him, he was clearly one sweetheart of a little boy. Mikey was adopted from China and adored by his parents and older sisters, who are going through a grief I never want to understand. Add to their grief the horrible way he died. Mikey always rode in mom's car but got into dad's car instead. They just had the grandfather's funeral, as well -- so to say things were turned upside-down is probably pretty appropriate. I don't know all the details, but it certainly sounds like this was an absolutely horrific accident. I think of all the small things I've done that could have had monumental results: turning my back and then seeing Kate running into the street, walking by the kitchen counter and seeing something unsafe within reach, etc.

Yesterday was Mikey's memorial service, and they served pancakes afterwards -- his very favorite food. The cyberfriends of his family decided to do the same. And they decided to do something else that made a difference. They set up a fund to provide an adoption grant for a waiting child (special needs) in China. We were all asked to donate the cost of a pancake breakfast in Mikey's honor so that another little guy could find his forever family.

Kate ate pancakes and I made a small donation. If you are so inclined, please visit http://www.grantmeachance.com/ to do the same.

So Long Terrible Two's!

Let's see what your Three-Year-Old self can bring....

Daddy and I can't wait to enjoy the journey with you. We love you so much.

Happy Birthday, Kate-the-Great!


Baptism and Birthday Pics Coming Soon!

IEP -- the Icky, Exhuastive Painintheass

So, we had our first IEP meeting for Kate yesterday. For those of you who are not in the know, an IEP is an Individualized Education Plan and every child with a disability is entitled to one along with school services.

For those of you familiar with IEP's, then you know it's often a meeting where you feel belittled, stupid and steamrolled.

We walked in and the committee had an IEP pre-written for Kate, along with recommendations for placement after one test that they administered.

Oh, did we mention that these strangers never crouched down to her level to establish rapport? Or that they kept calling her "Katie" when her name is "Kate" -- K-A-T-E. I'm pretty sure we told this test administrator SEVERAL TIMES that her name is Kate.

When Kate was tested, this woman started the test without building rapport and then said, "Katie, can you point to your mama?" Kate glared at her and shook her head no. And that's how the whole test went.

Her results:
Kate's receptive vocabulary (what she understands) = a six month old baby
Bullshit. Anyone who knows Kate knows that she understands everything -- sometimes too well.
Kate's expressive vocabulary (what she can say) = more along a 15 month old
We agree.

The real issue to us is that she understands FAR MORE than what she can express, which indicates a SPEECH DISORDER and not a speech DELAY. Her therapists know it, her neurologist knows it, but these people who have met her ONCE are basing all their decisions on this ONE TEST.

What about what Kate's therapists have to say???

Well, the committee tells us, they don't know how she'll do in the preschool program. And she hasn't been tested for speech. (Um, yes she has. Look at her file.) And we don't test for speech until we feel that she's not succeeding in the preschool program.

UM, WHAT?!!!! My daughter has a speech disorder. It's not going to magically disappear.

And this set the tone for the whole meeting.

Good news: We got her into the classroom focusing on Speech and Language Impairment even though they wanted her in the preschool for students in global developmental delays (that have older kids too).

Bad news: We have to reconvene because this committee didn't make enough time to discuss our goals (we brought in a pre-written IEP too -- so "nanny, nanny boo-boo" to you!) and our daughter will not have a completed IEP by her 3rd birthday, which is a law. We were scooted out of there after an hour, especially when we started asking for written notice as to why they weren't going to provide specific services.

More later and my apologies for not being clearer. This is the kind of thing that's difficult to explain, but I wanted to get my thoughts on "paper" now.

Bottom line is this, folks: You are an expert in your child. Don't be blind to their weaknesses, but don't let other "experts" intimidate you with their vocabulary. Don't sign anything until you understand it and never sign ANYTHING until you've had time to review it away from the meeting.

Don't be bullied, don't let the feelings of intimidation overwhelm you, don't feel rushed into decisions that last for a year.

Speak up. This is the time to be a pain in the ass. This is the time to throw around legal terms (but understand them first.)

Get a family advocate -- they exist in every county. Get prepared. And get ready to be pleasantly surprised or horribly disgusted. Be prepared to go either way.

Many of the people in Kate's meeting were excellent. Unfortunately, a few key players were not.

And you know, it would have been easy to just sign the paper and let it go. But it wouldn't have been easier for Kate. And it wouldn't have met her needs.

Our kids don't need us to be perfect. They just need us to keep stepping up, to keep trying, and to get a little smarter each battle.

More later.

The First Word We Both Use to Describe Kate Is...

• Feisty

feist•yPronunciation: (fī'stē), [key] —adj., feist•i•er, feist•i•est.

1. full of animation, energy, or courage; spirited; spunky; plucky: The champion is faced with a feisty challenger. 2. ill-tempered; pugnacious. 3. troublesome; difficult: feisty legal problems.
Random House Unabridged Dictionary, Copyright © 1997, by Random House, Inc., on Infoplease.
(Which definition did we agree on? I'd love to say #1, but pretty much all of 'em. She's feisty in EVERY sense of the word -- the good, the bad, the ugly. And to be honest, we kind of like that.)

Below is a list created in preparation for Kate's IEP meeting (Individualized Education Plan) with the school system to plan for her placement next year to help her with her issues. I had created an entire list of words that described Kate and then asked Scott how he would describe her. I didn't tell him a bit of what was on my list. He got very quite for about thirty seconds and said, "feisty." Too funny! We do know our little girl well.

Here's the rest of the list:

• Curious
• Always moving
• Animal-lover
• Mama’s girl
• Superstar Swimmer
• Anxious
• Memory of an elephant
• Easily frustrated
• Stubborn
• Proud
• Spitfire
• Loving
• Sensation-seeking
• Willful
• Cooperative
• Demanding
• Book lover
• Not easily swayed
• Curious
• Wants to succeed, but gives up easily(on motor-planning tasks)
• Smart – knows how to distract others
• Seeks structure, rules—then is very proud of her accomplishments
• The runner
• Endearing
• Opinionated
• Passive IF she thinks others will do the work
• Hard-worker IF pushed initially
• Playful
• Lover of rhymes, songs, and all things silly
• Compassionate
• Crazy about babies, boys, cats, dogs and birds
• She’ll make you smile, wear you out, and win your heart. Guaranteed.

Is she easy? Um, HELL NO.

Do we sometimes wish it were easier? Um, HELL YES. (Low-maintenance she ain't.)

Would we trade her for anything? ARE YOU KIDDING? She's going to take the world by storm. And we can't wait to see it.

Knick-Knack Paddywhack,

...give your dog a bone.

And my daughter will steal it.

And eat it.

And mama will cheer! Little Miss Oral-Defensive is now mouthing EVERYTHING. It's a step in the right direction because we can't get her to talk more until we can touch her mouth, cheeks, tongue, palate. Six months ago, it looked bleak.

Thanks to Purina, things are looking up!

NEXT QUIZ:

And to think I didn't even notice...

And check out the devilish look in my girl's eyes. I want to say that her time will come, but I have a feeling Kate will be in the perky-but-tiny category. And she'll probably never even appreciate it!

And by the way...

Papa, thank you...

Happy Father's Day to my favorite guy! How about we eat some cookies to celebrate?

Good News from Dr. Coldfish

Good news!

MRI - unremarkable, except for a bit of flatness where two plates of the skull meet. Next step -- a head CT scan to rule out the premature closure of plates (which can prevent the brain from growing). The neurologist is NOT concerned about this, as Kate's head circumference has grown consistently, and specifically "very nicely over the past two months." However, since this can be easily ruled out with a CT scan, we're going ahead with that test.

Bloodwork -- normal! I'll confess here that there was one test that I was particularly worried about, so I left there one happy mama! The only test results they are still waiting on is the test for Fragile X syndrome but the good doctor said, "I'll guarantee that she's not Fragile X."

And now onto a description of this neurologist:

He walks into the room and starts spitting out test results. No "hello", no handshake, no eye contact. Truly, this man has the bedside manner of an iceberg. Quite honestly, I don't care as long as he knows what he is doing. I do feel for the families who need to have an ongoing relationship with him, though.

Here is the funny part, though. Kate absolutely adored him. She hugged him three times, gave him a pretzel goldfish, offered him her sippy cup of milk and blew him kisses. Eventually, he smiled and actually looked at me in the eyes and said, "her therapists must adore her -- what a sweetheart and what a smart little girl."

Holy shit, batman! Did you just make small talk???

When Kate gave him a final bear hug on his leg, one of his co-workers said, "Where's my camera phone? You don't see this every day."

That's my girl! She can melt even an iceberg.

Off to the Neurologist Appointment

In case you're checking in, we're leaving in a few minutes. Please pray that we get no news at this appointment! All we want to hear is, "we didn't find anything, so that points to apraxia." Don't get me wrong, apraxia is challenging, but not ominous.

Luckily, I already *ahem* "obtained" a copy of Kate's MRI report and, according to Dr. Mom, it looks pretty boring! And boring can be good.

More later today.

Sopranos Finale

Are you kidding me?!!!

If Kate had a sister....

Girlfriend Abigail and Kate get into their mamas' chairs and pretend to drink our sodas (closed). Abigail, currently waiting for sister Chloe from China, gazes at Kate with a look only an experienced sister can. Chloe, we can't wait to find out who you are!

So Darn Cute

Here's Kate all dressed up for the tea party to celebrate girlfriend Emily's 3rd birthday.

MRI

The long-awaited MRI date finally arrived. The only thing that could stand in our way was if Kate had a cold.

Well, on Thursday night she had a fever and threw up all over me. On Friday, she still had a fever. Saturday and Sunday were met with the "green elevens" (picture two rivulets of green snot coming from her cute little nose).

But we were determined. We prayed. We wiped a lot of snot. We used decongestant to get as much crud out as possible.

Monday morning arrived and with it, a wet cough. But no green elevens.

We thought we'd go and see what happened, fully expecting them to send us home and reschedule for July -- or August, because they only do MRI with anesthesia once a month (and those dates get filled quickly).

We were wrong. The MRI is done. Lab work is done. Results should be ready within the next few days and then we just have to wait for our appointment with the pediatric neurologist.

WOO-HOO! We've been waiting for this MRI for months (they couldn't do it the first time because of her choking issues, so we had to have the swallow study done first).

Now we're hoping that it was all for naught. This was done to rule out anything other than apraxia. Keep fingers crossed. Say prayers. Think good, karmic thoughts.

Gotta run! The after-effects of anesthesia are clumsiness, proneness to falling / injuries, etc. We've been to the ER often enough already without the aid of anesthesia, so I'm not letting Little Miss get more than two lengths ahead of me at any point.

Thanks for all your emails and positive comments from our last post.

More later!