So Many Words

Sometimes I like to do blog posts on Wednesdays - they're usually just a picture. "Wordless Wednesdays" if you will...

Today, I'm going for the opposite. Because of something awesome, amazing, stellar, radical, fabulous, exciting and long overdue! A new Anti R-word idea. See for yourself....

Buy A Dictionary Poster Here

It's what I try to tell my kids. There are so many, many words to convey how we feel and what we think. Do we have to limit ourselves to hurtful, hateful words when we experience frustration? When we want to be funny in the sarcastic way that so many have? We do not... we can know better and choose to do better. I have hope that by the time my kids are adults, the word, "retarded," will have passed out of common usage and that people will think with their hearts before their words pass their lips. 

Thankful Thursday

Yesterday kicked off the end-of-year holiday season with Halloween. Next up....Thanksgiving. To start the month off, I'd like to give a little thanks for some of the blessings in my life. Since we just had a major medical event in our family, I will have to put health first and foremost. Things are not perfect right now with all of us - but compared to all the awful things I worried about in the last 24 hours, we're doing just fine.

One of the other things I'm thankful for is how much progress Levi has made in his development and skills in the last few weeks. I'm certain he's still having hearing issues, but he is beginning to babble more. He's willing to practice walking more with his push toy and on the treadmill. AND he's decided that drinking from a straw cup is something he's willing to do (most of the time). If I get pushy about it, I think I can get him off the bottle in the next week....I'm so proud of my little pumpkin!

Drinkin' all by myself....

the more difficult twisty-hold-and-slurp

don't even think about taking my cup

Clapping for Himself - he's even proud about his straw skills!

Good Advice for Fellow Bloggers

This came across my news feed on Facebook and it seems like such smart advice, I just had to share...

Bloggers Beware - Unauthorized Photo Use

http://www.flickr.com/photos/potzuyoko/6549346059/

More, please!

Major, Major Brag Time! After months of watching Baby Signing Time videos and working sign language into his day as much as possible, Levi has finally decided he's ready to show us what he's learned. His very first sign. Yay, Levi!!

Learning to sign can be a huge deal for kids with Ds because they often develop verbal communication later, sometimes much later, than many other kids. Sign language can fill in the gaps until they learn to create all the complex sounds associated with speech. Some kids can develop huge vocabularies in sign language - and as they start learning to say the words verbally, the signs will slowly drop off and verbal communication takes over.

So, we've been working forever, seemingly with no results. Until today. It still took some prompting, but he did do the sign without physical assistance - I'd be willing to be that if we really celebrate and reinforce it, he'll start using it of his own accord in no time. And that will hopefully be the beginning of a snowball effect. Hooray!!

Photo Opportunity

Today, whilst the Bigs were off at school, the Littles and I went to play with the cousins. They are very close in age and so they should enjoy each other's company, right? They do - as much as any one and two year-olds might.

But when the moment comes to try to capture the moment for posterity, well... you can see for yourself.

Well, this two-out-of-four is a start...

No, you have to stay put

Where are we supposed to be looking again?

Wait! Come back...

Kids! Really...we've almost got it...

Aaand....better luck next time.

Such are the perils of photographing the Littles. They're so cute, I almost didn't mind.

Another New Adventure - for Trevor

Scouting is better than hanging out in a tree all day!

Trevor is going to be joining "The Scouts" - the Cub Scouts, specifically. We're very excited for him and hopeful that this activity is beneficial to him in allowing him lots of practice with socializing with lots of different people. He can sometimes have difficulty understanding and going along with some of the day-to-day rules and problems kids his age encounter. For example, dealing with frustration and learning to talk to friends instead of becoming volatile emotionally has been hard for him. Scouts tries to teach kids that life is about doing your best - not necessarily winning. It helps to teach them how to be good citizens, to be healthy and fit, to have respect and faith. These lessons are accomplished in ways that someone with Aspergers can relate to - they can focus on their special interests and perhaps even pick up new ones along the way.

I found a blogger who lays this idea out very well. Enjoy the read...

Why is Scouting suitable for kids with Asperger's (part 1)

Why is Scouting suitable for kids with Asperger's (part 2)

15 Months Old - an Update

Pondering, "is it too early to be a rock star?"

I usually look forward to the well-child checkups in our family. With Levi, there's usually some apprehension involved though. When you have a child who has developmental delays and is at higher risk for medical complications, you're often left feeling like you're waiting for the other shoe to drop. 

apparently, fishies are funny...

Since Levi has been sick for the last week with a virus his siblings picked up when they went for their flu vaccines the week before, I wasn't sure how much today's visit was going to involve. I knew we were skipping the recommended vaccines. I don't do vaccines when the kids are already sick - it's too taxing to their immune system. So that part was out...

She checked his ears whilst I played "squish-the-baby", a game necessary to ensure proper lack of head and body motion. No comment on his ears, although I'm almost certain they're full of fluid. He hasn't been responding to my attempts to get his attention verbally the last few days. He's so congested, fluid in the ears has to be the reason why... At least they're not infected; I'm certain she would have mentioned that. Challenge #1: complete. Wait - I just looked at the clinical summary. Diagnosis: otitis media chronic serous. That's the big, fancy medical term for middle-ear fluid - all the time. I was right. Too bad. 

some page-turning practice

She checked his teeth and throat and managed not to get bitten. Doc: 1 - Levi: 0. His upper molars are breaching the surface (ow!) and his lower lateral incisors are both through the surface, although the right one is a little further along. His upper lateral incisors are following right along. I imagine in just a few weeks, we'll see the points of those poking through too.

I explained that I just started the process of getting Levi seen at the Eastern PA Down Syndrome Clinic. It's about an hour and a half from our home, but my understanding is that they take a comprehensive look at the child's entire medical history and make recommendations on therapies and other specialists to be seen. I would really like to have extra confidence that we're not missing anything important. I'm already feeling kind of bad that I unknowingly let Levi's ears sit full of fluid for so long because we didn't get his hearing checked at six and twelve months. 

He measured up at 31 inches (oops, try again, Nurse)... 30 inches (15th percentile) and weighed in at 21 pounds, 1 ounce (7th percentile). His head circumference is 17 3/4 inches, which comes out to the 4th percentile. She assured me that despite being very low, they are all right on track for where Levi has been for months. That is still a point I disagree with - I think that Levi needs to try a higher dose of thyroid medication yet. When he started his medication, he experienced an immediate growth spurt. He still has several symptoms of hypothyroidism after about 9 weeks of medication, so I hope to convince the endocrinologist to try the next higher dose and see how he does.

So anyway - that's all there really was to this visit. I gave report on how he's doing in therapy and some of the skills he's learning. She gave him the all clear and we're to come back at 18 months for the next checkup. 

The vaccines on the table for today were for Hepatitis A, Chicken Pox and the MMR. I've already told her that I don't feel comfortable with giving the MMR until he's at least 2, maybe even 3. I'll have to look again at the need for the Hep A and the Chicken Pox vaccines. It's tabled for now.

I caught Levi practicing his proper standing techniques a little.... his standing used to always look like this:

notice the propping of the belly against the table

Now, I'm starting to see more of this:

Space between the tummy and the table;
he's working the core and leg and butt muscles here. Yay!

Late breaking news... got an update from the endocrinologist. Levi's TSH (thyroid stimulating hormone) is down to 3.23. The last test he had was 6-point-something. Prior to that, it was 11.6. So we're definitely headed in the right direction!! My goal is to get it down to between 1.00 and 2.00. From all the reading I've done, people with hypothyroidism seem to have the least issues with hypothyroid symptoms when their TSH levels are in this optimum range. So, I asked for a call back from the endo himself to talk about bumping his medication up to the next highest dose and see how he does with that. I hope he'll be agreeable to my master plan!