Beautiful Words

Having children with disabilities has a side effect which I've come to love. It has given me new perspective on what's really important in life. Not the stuff we have or the title of our job. It is in finding satisfaction in our lives by giving and loving. Loving the people in the our lives and loving what we do for others.

The Countdown Begins

Okay, so maybe in my own mind, the countdown has been going on for a while. 5 weeks! That's all that stands between Levi and his first birthday. I'm officially in the midst of party planning and I will admit that thus far, it's felt the most exhausting. I think it's because I'm trying to go big - this is our last first birthday, after all - AND stay within a reasonable budget. All of this while trying to still keep it all fun and exciting. It's hard. Sometimes too hard for a woman who wants nothing more than to fold some laundry and take a nap (most days). But it will be sooo worth it once party day is here!

First cake - for Nana's birthday!

I think that Levi's birthday will be bittersweet - I read so many stories of parents who have kids with Down syndrome. Many have confessed that birthdays, especially the first one, can be difficult. It truly is a celebration of life and all that the little one has worked so hard to accomplish, but it can often be a painful reminder of how the gap between their child and "typical" peers is widening. Will knowing that this issue will likely be dredged up from the bottom of my heart help to keep me from feeling that sadness? Only time will tell... For now, I'm going to focus on the details of the party and keep enjoying what's left of the rest of Levi's first year. It will be over before I know it!

Practicing fine motor skills

So at 47 weeks of age, I discovered a major error on my part. This knowledge came about accidentally as I found a better way to measure Levi's length. He's so wiggly, it's hard to know whether I'm getting an accurate measurement. So along with this "new and improved" method, I found that Levi's actually a full half-inch shorter than what I'd thought! Ack!! For whatever reason, his growth (length-wise) has always been one of the things I like to keep a close eye on.

This new information drops his height down to about the 15th percentile on the typical growth charts. I'm so happy we have an appointment with the endocrinologist next week. I'd really like confirmation from an expert that I'm not doing anything (or NOT not doing anything) which might be affecting his growth negatively.

Working puzzles with Evan

This week, Levi has shown serious improvement in taking a bottle. He's averaging almost 15 ounces per day, which is great. The recommendation for a child his age is typically a minimum of about 16 ounces per day, so he's really close. The problem is that pumping breastmilk is not going so well. I can't keep up with that demand so I've needed to mix in formula. I don't mind that so much as long as he's getting at least 6 ounces or so of breastmilk per day along with the formula. I'm just doubting whether we'll be able to make it to his birthday. Ideally, I'd love to keep a few ounces of breastmilk in his diet for another couple of months, but I donated almost my entire "stash" from the freezer a few months ago because it seemed he was never going to take a bottle and I didn't want it all just to go to waste. Live and learn, I suppose...




Enjoying a bedtime bottle


Levi has started to develop another skill, which I believe is part of his overall plan to avoid four-point crawling! He's started pushing to his feet from a sitting position. With practice, he'll learn to pull to a stand from one knee/one foot. It's a rudimentary skill right now, but I look forward to seeing how he's doing near his birthday!

Yelling is still Levi's favorite form of communication, though I am hearing more and more of the complex babbling sounds. I definitely need new ideas on how to motivate him to talk more. When he wants attention, or is bored or is just trying to be silly, he gives a loud, throaty "aaaaaaah!!" I'd actually do the sound for you, but it kills my throat - I don't know how he does it all day!

Here's a sneak peek at the inspiration point for Levi's birthday. I'm so excited!!

Stats for the week:
Height: 28 inches
Weight: 21 lbs
Head Circumference: 17.5 inches

47 weeks and being shy-silly

Eating

I never thought I would say these words: I hate eating. Let me clarify - I don't dislike eating for myself (though I sometimes think that if I found it a little less enjoyable, it wouldn't hurt in the weight-department). No, it's my kids' eating that is going to push me over a cliff!

First came Trevor's eating issues. They're not as bad as they were a year ago, but almost. He doesn't like anything new unless it's the latest junk-food craze. He doesn't really eat any meats. His only good sources of protein are peanut butter and string cheese. He has to be coerced to eat fruit and will only consume the canned/prepared varieties. And heaven-forbid if there's a single discoloration or stringy-thing on the mandarin oranges... it's not happening at all! Let's not even discuss vegetables. That's torture. It's stress for him and stress for hubby and I, pretty much every day, on this issue.

In the last few months, Evan has jumped on Trevor's pickiness bandwagon. The boy who used to steal my lunch and eat broccoli, baked potatoes and pizza now refuses to consume almost any fresh foods and I'm hoping 80% is related to toddler-hood, 15% to enlarged tonsils and the remaining 5% is probably genetics. (I'll admit I was a picky eater as a child)

Now, Levi has spontaneously given up breastfeeding (about 2 weeks ago) and though he did finally begin taking a bottle, I can now see that he consumes no where near the recommend amount of breastmilk/formula for a kid his age. He's supposed to be taking a minimum of 16 ounces per day, but when he first started, he was only drinking about 8 ounces per day. I finally worked him up to 15 ounces yesterday, but today, he refused a bottle, so the total will be much lower.

It's driving me mad. I suppose it would be silly to presume that things will go on like this forever. The likelihood is that all four kids will eventually eat a mostly balanced diet as teens/adults... but the path to getting to that happy place is seriously jepordizing my sanity. I need something sturdy to hold onto for the next 15 years. Any good mantra's out there?!? This too shall pass??

I need a good laugh... when that happens, I turn to llamas (thanks to a college professor's recommendation)...

Today's Concern: A False Cure for Autism

This morning was one of those I firmly place in the "this sucks" category. Trevor's ASD reared it's ugly head BIG time and left us both close to tears as he got on the school bus. It got me thinking more about how he really needs more services to address his behavioral and emotional issues and he just doesn't get them right now because of how well he does while in the school environment.

I got to thinking about how the DSM-V diagnostic criteria will be changing soon and I began to worry (again) about whether Trevor will still qualify for a diagnosis when the new publication is released. I feel he should. And according to what I'm reading, he may... but it's certainly not guaranteed. It's rather upsetting to think that a whole group of people who clearly have difficulties which need addressed are going to be swept under the rug for the convenience of insurance. They seem to think it's the "cure" for autism... well, at least the cure for the rising rates of diagnosis anyway! HA!

I wanted to share what I feel was a great write-up on this issue. Hope you find it as informative as I did!

New DSM-V Criteria for ASD

Almost Wordless Wednesday

A Little iPad therapy

The MotherPucker Project - Help a Mama Out!!

I love, love, love the girls over at Rants from Mommyland! They are awesomely funny and amazingly generous. They have organized several outreach programs, allowing moms to help other moms in fabulous ways!

Their most recent project is termed the MotherPucker project - in honor of Mother's Day. One aspect of this project is Bloggers for Birth Kits. There are parts of the world where maternal childbirth rates are WAY too high and it's because they lack sanitary materials for childbirth. The gals at Rants from Mommyland posted a blog which shares a way in which moms can help other moms by putting together inexpensive Clean Birth Kits - or by contributing a donation to buy the kits to be sent to moms-to-be. Check it out here and participate if you can. An hour or two of your time and/or a couple of dollars can save so many lives!! You can donate/make kits whenever you'd like, but the deadline for emailing to participate in the MotherPucker project is tonight so GO, GO, GO!!!

Learning to say Hello Properly!

I've only been working on teaching Levi to wave for about a week or so but he seems to have picked up the concept pretty quickly - very proud of him! And since I'm greedy, I don't know when to quit when I'm doing video, so you can pretty much disregard everything after 30 seconds or so... unless you want one last Hurrah at the very end!