Thursday, December 25, 2008

Merry Christmas!

"Mom, Santa eat it!"

"What did Santa eat, Emma?"

"The cookies!"

These are the words that greeted us this morning. We had heard Emma get up and tiptoe downstairs to look for presents, as she has for the last few mornings. No disappointment this morning!

Last night, we hung the stockings and left Santa his cookies and milk, and a couple of carrots for the reindeer. Emma insisted on going to bed right away - we had told her that Santa only comes when kids are asleep, and she took that to heart.







Once we established that Santa had eaten his cookies, Emma wasted no time opening her presents.



My little Hannah Montana fan was thrilled to get a CD - something tells me we'll be hearing this one over and over and over...



Emma wanted only two things from Santa this year. In her words, "a haircut chair and a Jenny doll." We had seen these at Target, and it's all she could talk about over the last few weeks. Santa didn't let her down!





I see hours of fun ahead with these!



Emma did have some help opening her gifts...





Emma keeps going back to the empty plate and glass that Santa left behind. She is simply awestruck that Santa was HERE and ate the cookies and milk that we left him! "Mom, there's crumbs! Santa eat it all!"

The rest of the day will be pretty relaxed...our extended family celebration has been rescheduled for Saturday, thanks to several more inches of snow. We had about 3 inches overnight and it's still snowing! The lights have been flickering, and we're praying we don't lose power.

We hope your day is filled with family time, good food, and happy smiles. Merry Christmas!

Tuesday, December 23, 2008

An awesome stuck-in-the-house craft!

So Emma and I are still at home - a plowing/sanding truck came by around 6:30 this morning and promptly got stuck on our hill. They had to call another truck in to help guide the first one as it came down backwards. They were finally able to get the hill plowed and sanded, and Chad headed to work for a meeting. He said it was pretty nasty out there, so I decided to stay put.

We've done a little bit of everything today. We made cookies, we cut lots of shapes out of paper and glued them to construction paper, we played with playdough, we worked on handwriting, we watched more Hannah Montana than any human being should be subjected to. I had to pull out the big guns.

I saw a version of this on the Food Network - the Neelys made Christmas ornaments this way. They took metal cookie cutters, sprayed them with cooking spray, put them on parchment paper on a cookie sheet, then put some hard candies into the cookie cutters. You put them in the oven until the candy melts, then pop them out of the cookie cutters after they cool. They were really cute, so I picked up a bunch of bags of Lifesavers so we could do it ourselves.

Our first attempt was an abysmal failure. They broke into hundreds of little pieces when we tried to get them out of the cookie cutters. I had to get creative, so I pulled out my silicone cupcake pan.


Emma helped me put Lifesavers into each little well, and I stuck them in the oven (350 for about 8-10 minutes). We let them cool, and VOILA!


Rainbow candy perfection!

Monday, December 22, 2008

We're done with the winter wonderland.

It can go away now.

It was 3 degrees here on Saturday morning. I was reminded of our days back in Flagstaff, AZ...when we had to haul water and firewood in temperatures that low. That's one of the reasons we don't live in Flagstaff anymore.

We had another 4 inches of snow on Saturday night, and about 3 inches last night. We are STUCK at the bottom of our hill because we don't have four-wheel-drive, and when our brilliant road crew finally plowed and sanded, they did it late yesterday afternoon. Right before the snow started. Guess how long it took for that sand to disappear? We haven't seen the road crew since.

I kicked Emma out onto the deck for a little independent play time. She lasted about 10 minutes before she was at the door begging for hot chocolate and marshmallows. The girl knows what's important in life!



Friday, December 19, 2008

It's a winter wonderland!

We don't get much snow here in Western Washington, but it's sure felt like a good old-fashioned East Coast winter lately! It's almost like being back in Philly! We've had about 10" over the last week, with some clear and cold weather in between storms. We're expecting another 4 - 6" on Saturday night, and then hopefully it will start to warm up. I never thought I'd be wishing for the rain to come back!

Emma, of course, loves the snow. She would stay out there until her little fingers and toes froze off, and getting her to come back in is quite the challenge.





This is the hill that leads directly to our house. Kids use this hill for sledding (yes, on the street!) and I watch nervously out the window every time it snows. Amazingly enough, this time we've only had one car end up stuck in our driveway (he slid after trying to avoid the sledders and crashed into the sign post), and only one sledder has gone into our garage door. For the record, the police don't care that the kids are sledding on the street, and a fair number of kids have parents who are not only supervising, they're participating. We wish they'd stop, but we seem to be the only ones who are concerned.


Tuesday, December 16, 2008

Thinking of Annette...



One year ago today, my friend Annette passed away from synovial sarcoma. She was a fellow traveler on the journey of raising a child with Down syndrome, and did so much for so many. She was a wonderful friend, and I miss her.

Friday, December 12, 2008

Nothing says Christmas like...

Children singing Christmas carols...

video

and kittens in Christmas trees.

Monday, December 1, 2008

Advocating for others

I've recently been asked to help a couple of families that are having trouble getting appropriate supports and services for their preschoolers. I've been studying special ed law since Emma was about six months old (I've done oodles of trainings, read books, gone to conferences), have (so far) successfully advocated for her, and have been looking for ways to use the knowledge I have for children who aren't mine. My name somehow gets around because of the volunteer work I've done, and even though I've done some coaching over the phone, I haven't actually taken on actual cases until now.

One of the moms I talked to was frantic. I won't give identifying details, but her preschooler was suspended for behavior. Yes, you read that right. A preschooler. Suspended. For behavior.

We talked for over an hour, and she told me an IEP meeting had been scheduled for this week. I offered to go along to the meeting, but told her I would need to review all the previous IEPs, evaluations, and other communication in order to attend as her child's advocate. I offered to pick everything up, and make the copies myself. She told me she would get the paperwork together and call me the next day.

That was a week ago, and I've heard nothing. The IEP meeting is tomorrow. I know she has my phone number, because she called me back the first day we talked to confirm the date and time of the meeting. I am so frustrated, because I know I could make a difference for this child, but I won't go to an IEP meeting without all the facts! I also refuse to chase someone to get what I need - not only am I too busy for that, but since I am an unpaid volunteer, I need people to show some commitment and meet me halfway.

Am I being unreasonable? Or am I setting appropriate boundaries? What would you do?

Sunday, November 16, 2008

An apology

Yesterday, I found out that I owe Dave Hingsburger an apology.

Dave writes an amazing blog at Chewing the Fat, and I look forward to reading it every day. Some days he makes me laugh, some days he makes me cry, but he always gives me something to think about, and I almost always agree with him.

Except on this one issue. See, Dave has blogged numerous times about caregivers and touch. He has some pretty strong opinions on the ethics of touch, and while I completely understand why he (and others in wheelchairs) doesn't want complete strangers touching him (having survived pregnancy and those freaky people who want to touch your belly), I just couldn't get my head around a particular blog post of his. You can read it here. When I read this, I just couldn't conceive of affectionate touch between a parent and child being harmful. Dave spoke of the young teen in his post being "stuck at touch for the age of two," but I didn't see the problem.

Until yesterday.

I spent my Saturday in a fantastic training on having difficult conversations. We learned about engaging in learning conversations, rather than telling conversations, and some great tools for making conversations "safe" for both parties, so you can get past individual positions and down to the real issues. One of the group was a young man (early 20s) who introduced himself as having high-functioning autism. He was a neat kid who had plenty to add to the discussion, and a real purpose for being there. Some of his comments led me to believe that the majority of his difficult conversations have been with his mom - sounds like a typical young adult, don't you think?

His mom showed up during our last break, and she stayed through the rest of the training. When she walked in, she came up behind her son and put her arms around him. From that point on, there was rarely a moment when she wasn't touching him. She ruffled his hair. She rubbed his arm, his back, his neck. She squeezed his shoulders and kissed his head. It gave me the creeps. I touch my daughter in similar ways when we are snuggled on the couch watching tv, or at bedtime, but my daughter is SIX.

The worst part about this mother's touch was that it almost completely shut down the young man's interaction with the group. We had to get past her to get to him, and he hardly tried to get past her to reach us. For the first time I understood that touch - even touch that is intended to be good and affectionate - can be damaging. It can place limits and create barriers, and that is not what any of us who have children with disabilities want for those children.

So, Dave - I'm sorry. And thank you. Keep doing what you're doing, because even though some of us are a bit slow, we do eventually get it.

Friday, October 24, 2008

That'll teach me to complain about germs...

Perturbed by pinkeye? Little did I know the bigger, badder, nastier GERMS were just around the corner. I should have known.

Two days after my pinkeye post, I woke up in the middle of the worst panic attack I've had in years. Think waking up from your worst "a serial killer is chasing me" nightmare - we're talking heart-racing, cold-sweating, can't-breathe panic. Only there was no bad dream, this is something that for many years has just happened, anywhere and any time, for no apparent reason. Fortunately, in my 20s I found out it had a name - panic disorder - and could be treated with meds. So why was I in a panic now? I rarely have major attacks like that, unless I'm going to be violently ill.

Oh, crap.

That's right. I was about to be violently ill. And thus began the 48-hour stomach virus saga of '08. I don't deal well with barfing illnesses. Call me crazy, but that lost its appeal after 16 weeks of morning, noon and night sickness with Emma. I did, however, manage to survive. Even lost a few pounds in the process (although someone told them where to find me again. What is it with eating solid food and gaining weight?).

Saturday, I wasn't 100%, but Sunday and Monday I felt like myself again. Moving along, catching up on laundry, went grocery shopping and even cranked up the bread machine (there's that solid food catch-22 again). Fast forward to Monday night, 11:30pm. I hear a rustle over the baby monitor. A raspy yawn. Promptly followed by a bark, then three or four more. Loud, terrifying croupy barks.

Emma has been prone to croup since she was about 10 months old, when we had our first hospitalization because of it. A couple of years ago, she was getting it once or twice a month in the fall and winter months, and the doctors finally let us treat her at home with steroids when it happens. Even so, we've still had at least one ambulance ride since then, and despite promises that she will grow out of it, the croup monster continues to plague us. At this time last year, the pediatrician put her on a daily dose of Flovent, in hopes that the inhaled steroid would keep some of the inflammation in her airway down, and what followed was the mildest winter croup season we've ever had. She went off it in the summer months, and had her first bout of croup a month ago - relatively mild, but still requiring two doses of steroids.

We have treatment down to a science: chocolate pudding and tv work miracles. The pudding coats the pills that need to be swallowed, the tv distracts from the stress caused by difficulty breathing. Monday night, there was a little more distress than usual, a louder stridor, and a lot more worry on Emma's part. Still, she her breathing did quiet down a bit, and she went back to bed. Unfortunately, she barked all night and was still at it in the morning. This has never happened after steroids, so we were off to the pediatrician first thing.

Since then, we've had two more nights of steroids, and last night, which was borderline, but she made it through without the meds. She was still a bit raspy and barking this morning, and still very tired - everything was making her cry. I decided to keep her home from school again, so we're just laying low and watching way too much tv. We're all a bit sleep-deprived.

Here's a tiny clip of what our croupy nights are like

video

And for anyone interested in a reading a little further, here is something I wrote after an ER trip a few years ago.

Emma couldn't breathe tonight. I was sleeping on the bed in her room, to keep an eye on her, when she rolled over, coughed a couple times, and started to wheeze. That cough is always described as sounding like a seal barking. It doesn't sound like a seal to me. It sounds like an ER visit closing in around me like the dark night. I took her into the bathroom as she fought for breath, turned on the shower and tried to calm her. It wasn't working. She was scared, I was scared, and the steam didn't help. Her eyes were panicked, like a wild animal suddenly trapped.

I didn't know what to do next, so I ran downstairs and outside to see if the cold air would quiet the awful noise coming from my baby. It didn't, and we headed for the hospital, a frightened family in a minivan, speeding across a bridge. As we pulled up, I grabbed Emma and ran through the automatic doors. There were people everywhere in varying states of distress, but all went silent, heads turning to see the baby who sounded like a broken garbage disposal and her pale, frightened mother. Somebody yelled for the triage nurse, and as we waited, they started taking our information.

The triage nurse came to get Emma and me; Chad stayed to give the stupid details they want before they can save your life. As the nurse began asking for Emma's health history, we heard a thump and a scream from the waiting area. A woman had walked in and collapsed. The nurse jumped up to help, and I thought, "Forget her! This is my baby you're taking care of!" I feared there was a stabbing or gunshut wound, and my child would end up on the back burner, struggling to breathe.

Not the case. The nurse came back. He checked Emma's oxygen saturation level, and it was in the mid-80s. My heart became a stone in the ocean. Emma couldn't breathe, and I was scared shitless. I pasted on my game face and answered the ridiculous questions about a surgery that had nothing to do with her current condition, and the endless questions that come when they realize she has an extra chromosome. Six hours - six minutes? - later, they led us back to a private room. A mural with an elephant and a tiger playing a lewd game of doctor filled one wall. Almost immediately, a doctor came in and started asking more stupid questions.

Then my hero arrived on his beautiful charger named racemic epinephrine. It was the respiratory therapist from the NICU. Nearly three hours, one breathing treatment, and one dose of decadron later, we were on our way home. Lord, I hate modern medicine, hospitals and doctors. But Lord, am I thankful it's there to save my girl's life.

Saturday, October 18, 2008

Forget the pumpkins, bring on the pig show!

Emma's pinkeye was under control Wednesday, so we got to go to the pumpkin patch with her kindergarten class. It was cold and foggy...but not raining...which can be a rare thing for October in the Pacific Northwest. Emma enjoyed every moment, especially the pig show.

What's a pig show? I'll try to describe it, but I wish I'd thought to take a video. So The Farm (in Snohomish, WA) has these pigs. There's an older pig, named George, and three little piglets. They have a pen set up with three little houses - one's supposed to be made of straw, one of corn (poetic license with the Three Little Pigs story), and one of sticks. Then there's a long run that leads to the brick house. The narrator tells the story, with big ol' George as the wolf. He goes to each house in turn as the piglets move into each one, then they drop the doors and the little pigs (chased by George) run past the kids to the brick house. Very hard to explain, but the narrator is hilarious, and the kids just laugh their heads off as the pigs run by. I somehow managed to get a shot of Emma's reaction. Do you think she liked it?



When we got home, all she talked about was the pigs. She was happy to have her pumpkin, but she really loved the pigs. Here are some pictures from the rest of our morning.









Tuesday, October 14, 2008

The germs...the GERMS!

I was really looking forward to this morning. Yesterday, I took a 20 minute walk after taking Emma to school and I was going to do it again today. Emma's therapies were scheduled for after school, which would have given me an extra hour to get things done. My list was a mile long, and I hit the ground running when I got up this morning.

Then Emma got up. With a raging case of pinkeye. ~fizzle~ That was the sound of my plans for the morning. Instead, we were off to the pediatrician, scoping out an Rx for gentamycin drops (which apparently sting, based on Emma's screams when I put them in her eyes). The good news? She can go back to school tomorrow as long as she doesn't wake up with crusty eye. The bad news? Tomorrow's the trip to the pumpkin patch, which I've volunteered for. There's no school Thursday (because the PM kindergarten is going to the pumpkin patch). And I have plans scheduled for Friday which will have me out of the house the whole time Emma is at school, which means my next chance of being home alone "getting things done" is Monday. No wonder my house is a wreck!

Yes, I'm a whiner. Yes, pinkeye is incredibly minor. But did I mention that my eyes have been feeling gritty and itchy for the last hour or so?

Wednesday, October 8, 2008

Special Exposure Wednesday



No Emma pics today, just some kitty love! George and Lucy (our snuggly kittens) can make any day better.





Okay, one Emma pic. "Look how nice I can be, Mom!"

Monday, October 6, 2008

Our Money Makeover story

We were featured in the Sunday Seattle Times, with a money makeover to help us plan for Emma's future. Financial planning was a good process to go through, and I'd recommend it to anyone. If you're in the Seattle area, I'd definitely recommend David Lamp at BBJS Financial Advisors, who did our plan for the article. He was wonderful!

If you'd like to read the article, you can go here.

Tuesday, September 30, 2008

Emma's turn!

Today's blog post comes straight from Emma. The request went something like this:

"Mom? Emma? Pictures? Computer?"
"You want to take some pictures and have me put them on the computer?"
"Okay!"
"Do you want me to put them on my blog?"
"Yes!"



So here you go, our walk to school, as photographed by Emma.













Emma's friend Alicia lives here - they're in kindergarten together. You can just barely see Alicia in the window; I think she's home sick today.







"Emma, don't just take pictures of the sidewalk." (For the record, I deleted a LOT of sidewalk pictures!) "No, Mom, feet!"

















Here are Emma's friend Stephen and his mom, walking to school



Mrs. E - crossing guard and kindergarten aide extraordinaire!



Our neighbor's dog, Ranger. Emma got to practice saying "May I take a picture?"



Classmates Colby and Allyson



Allyson's dog



This made our walk to school a lot of fun. Anybody have suggestions for Emma's next photo blog?

 

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