tag:blogger.com,1999:blog-71867785185102312642024-02-19T03:01:48.016-08:00A Life UnexpectedA chronicle of my life events, including raising children with Asperger's syndrome, with Down syndrome and with love.
Life, love and laughter, with a few unexpected moments thrown in for good measure...Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.comBlogger106125tag:blogger.com,1999:blog-7186778518510231264.post-62740361799366574762014-10-20T13:49:00.002-07:002014-10-20T13:49:47.772-07:00Preschool Ups & Downs... and a little something extra too<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-xap1/v/t1.0-9/10488145_10205085136270710_4006726782391251290_n.jpg?oh=6116ff01f5adee3d3680f6badd585f5e&oe=54EE06CC&__gda__=1424989081_c1f77a24ff4b7263a7921824ec9aff53" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-xap1/v/t1.0-9/10488145_10205085136270710_4006726782391251290_n.jpg?oh=6116ff01f5adee3d3680f6badd585f5e&oe=54EE06CC&__gda__=1424989081_c1f77a24ff4b7263a7921824ec9aff53" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">October 2014</td></tr>
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So, I knew it was coming. And yet, it still registers as a shock. Levi now officially has a dual diagnosis of Down syndrome and autism. It was pretty clear when he had his testing for intellectual disability a few months ago that something else was going on. This confirms it.<br />
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The doctor's recommendation is to begin receiving ABA (applied behavioral analysis) therapy as soon as possible at the quantity of 30 hours per week. It's intensive - but it is considered the gold standard of therapy for people with autism. And based upon my reading, kids who successfully obtain this intervention generally have high levels of improvement and learning.<br />
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My goal for Levi has always been to be in an inclusive education environment, but with his current level of development at 3 1/4 years, it seems unlikely that he would be able to participate and benefit from that learning without having a 1:1 aide with him at all times, possibly not even then.<br />
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<tr><td class="tr-caption" style="text-align: center;">working on his couch-potato skills </td></tr>
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I am hopeful that with the ABA therapy, we can improve his skills and reduce his delays to the point where that goal is again within reach.<br />
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On a more positive note, we also discussed the problem with Levi's ADHD-like symptoms. At his age, he is technically too young to receive an ADHD diagnosis, but his doctor assured me that it is safe to treat his symptoms to see if we can improve his behavior and his opportunities for learning. So finally got started on the same medication his older siblings had been using successfully and immediately, everyone began seeing a drastic difference. His eye contact became more consistent. He looks at you (most of the time), when you say his name to get his attention. He is more willing to sit still to participate in therapy activities instead of trying to get up every 30 seconds. Most notably, his willingness to imitate sounds easily tripled immediately. He is just so present and attentive now! Also, I haven't seen the usual house-ransacking that used to occur at least 4 to 5 times every day. It's amazing. His therapists and preschool teachers are as blown-away as I am! I sincerely hope the improvement continues and that it helps Levi to make significantly greater gains in skills than he has in recent months.<br />
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working on fine motor and spelling - Endless ABC's</div>
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Preschool didn't start off so well - Levi spent several tear-filled weeks crying through all of his preschool time. We made adjustments to his thyroid medication and some other nutrients that his physician felt might be contributing to anxiety about the new environment. Within a couple of days, he would only cry for the first half of class and then just "suddenly" decide that he was going to enjoy himself and - voila! - no more tears for the rest of the day. After a few of those days, he just stopped crying altogether. It is such a nice feeling to know my pumpkin is finally enjoying himself away from Mom.<br />
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In other news, Levi is doing really well physically. He is growing tall (37 1/2 inches) and is up to 33 pounds. He is starting to become interested in participating in activities with his siblings and loves to get snuggles from Mom and Dad. My little guy is getting so big so fast!!<br />
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<tr><td class="tr-caption" style="text-align: center;">enjoying his preschool field trip to a local orchard for apple and pumpkin picking, with his brother, Evan</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-33215937934833014562013-10-06T11:59:00.000-07:002013-10-06T11:59:13.933-07:00What to WriteOn the first of October, I recommitted to being more diligent about updating this blog. Ideally, because October is Down syndrome awareness month, I would love to blog every day regarding something important pertaining to Ds. But the truth of the matter is that in <i>our</i> lives, Ds just isn't as big a factor as I thought it was going to be.<br />
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Right now, Levi is 27 months old and in many ways, behaves just like a 2-year-old. He formulates a plan about what he wants to do and then sets out to do it. If he gets interrupted or told "no", he gets mad and will seek to find a way to do what he wants anyway! He is curious and destructive and adventurous and full of laughter... (and naughtiness)<br />
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His current favorite naughty activity is stockpiling goodies behind the couch. Everything back there has been lovingly dropped from about 3 inches above the back of the couch - placed with intense care, like with a game of couch-Plinko.<br />
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The downside to Ds is that in some ways, Levi is much younger than 2. His ability to pay attention during certain learning activities is limited and his comprehension of following directions is less than many other children of his chronological age. There are also delays in fine motor and gross motor skills. This can be particularly challenging when trying to assist Levi in becoming more independent in activities of daily living. For example, he understands that shoes go on his feet - but he doesn't understand how to actually get it on his foot and even with a simple slip-on shoe, it can be challenging to him to get everything lined up just right so that he can get his foot aligned and into the shoe. The biggest hurdle is his lack of language. He seems to understand at least half of what we say to him when we talk about "regular" things in our day. But aside from the 10-or-so "functional" signs that he has and uses appropriately, he's not able to express his thoughts and feelings in a useful way.<br />
<br />So essentially, his babyhood has been extended in some ways and at the same time, toddlerhood is already in place. This does make for some challenging days. But luckily, Levi is adorable and sweet and affectionate and lovely enough that most of the time, no one minds the extra effort needed to help him through those challenges. <br />
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-72126792240992821622013-10-01T13:01:00.001-07:002013-10-01T13:01:15.285-07:00It's October Again - Down Syndrome Awareness Month!It's been forever since I've written about Levi or Down syndrome. And it's not because I have nothing to say... it's because life, as always, is unexpected. As a mother of 4 and also recently surro-mama to another, it's hard to find time to say all the important things. Eventually, there's so much to say that it's hardest to know just where to begin.<br />
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But a new month brings new beginnings and so I will begin anew with trying to keep this blog current. And what better way than to take a quick look back at the past.<br />
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<tr><td class="tr-caption" style="text-align: center;">October 2011</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">October 2012</td></tr>
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<tr><td class="tr-caption">October 2013</td></tr>
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<span style="color: purple;">"Time does not change us. It just unfolds us." - Max Frisch</span></div>
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<span style="font-family: Times, Times New Roman, serif; font-size: large;">I can't wait to see how the next year unfolds for Levi....</span></div>
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-40783172844556255762012-12-13T11:26:00.000-08:002012-12-13T11:26:26.689-08:00Oh Brother!Sometimes having a brother, especially one close in age, is awesome. Someone to play with - someone to laugh with - someone to get into trouble with....<br />
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Sometimes having a brother - is an chance to exact revenge.<br />
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<tr><td class="tr-caption" style="text-align: center;">Oh, your hair is so soft! Mind if I pull it a little? That's right - just pretend I'm not here... </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Check out my awesome, squishy cupcake...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">You want it?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipUcgfcNFEFWCUysnOr5D_tI06e9Ml2wd4pucdoyNwzS2x2ZBmMZCGHSIvrhF6mDMyDzCCR58wxnxQW4gFX6ba8jeVII30HDL8PrlL6R5PMRymWjPEFQXcRCd7PUQ37Ru6q05bU-1q22vY/s1600/DSC_2727.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="160" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipUcgfcNFEFWCUysnOr5D_tI06e9Ml2wd4pucdoyNwzS2x2ZBmMZCGHSIvrhF6mDMyDzCCR58wxnxQW4gFX6ba8jeVII30HDL8PrlL6R5PMRymWjPEFQXcRCd7PUQ37Ru6q05bU-1q22vY/s320/DSC_2727.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm such a great brother...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSFL6ME394yqNqh4ZomurcA7GyZYqmBRe1PdZn_QC5yCVaGzVK6utipVtmygoczWChcEbafmqWaViXXyqS1SyTa2LEnKmoqFwf0406KTB0Wc2j-14uw2uJoqJVC8gieQU4dBR1G_jJr6fY/s1600/DSC_2729.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="174" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSFL6ME394yqNqh4ZomurcA7GyZYqmBRe1PdZn_QC5yCVaGzVK6utipVtmygoczWChcEbafmqWaViXXyqS1SyTa2LEnKmoqFwf0406KTB0Wc2j-14uw2uJoqJVC8gieQU4dBR1G_jJr6fY/s320/DSC_2729.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mmm...num num num.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaevKy1ACAcdAFlfULmTyXAVb0i86VoM5ik5dNtBnLC1r6vo0ygK57yMjFkUrgXQIFYt_5lf7iQBv3hvQnR3CH19bZiR7r4_kbAzf_Ls-k_PURARFmNsfhyphenhyphenXHUSckOIPa-1U0rYDnddaJv/s1600/DSC_2730.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="175" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaevKy1ACAcdAFlfULmTyXAVb0i86VoM5ik5dNtBnLC1r6vo0ygK57yMjFkUrgXQIFYt_5lf7iQBv3hvQnR3CH19bZiR7r4_kbAzf_Ls-k_PURARFmNsfhyphenhyphenXHUSckOIPa-1U0rYDnddaJv/s320/DSC_2730.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">HaHa - Psych! Mine....</td></tr>
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At least they're fun to watch!Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-46847018143986645132012-11-07T20:40:00.000-08:002012-11-07T20:40:05.218-08:00So Many WordsSometimes I like to do blog posts on Wednesdays - they're usually just a picture. "Wordless Wednesdays" if you will...<div>
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Today, I'm going for the opposite. Because of something <span style="color: #134f5c; font-family: Verdana, sans-serif;">awesome</span>, <span style="color: #38761d; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">amazing</span>, <span style="color: #741b47; font-family: Verdana, sans-serif;">stellar</span>,<span style="color: #990000;"> radical</span>, <span style="color: #0b5394; font-family: Georgia, Times New Roman, serif;">fabulous</span>, <span style="background-color: white; color: #4c1130; font-family: Arial, Helvetica, sans-serif;">exciting</span> and <span style="color: #b45f06; font-family: Georgia, Times New Roman, serif;">long overdue</span>! A new <span style="color: #cc0000; font-family: Courier New, Courier, monospace; font-size: large;"><b>Anti R-word</b></span> idea. See for yourself....</div>
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<a href="http://alisonrowan.bigcartel.com/product/reduced-shipping-folded-11x17-buy-a-dictionary-poster-that-s-so-retarded" target="_blank">Buy A Dictionary Poster Here</a></div>
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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. </div>
Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-6152634016733750662012-11-01T20:42:00.003-07:002012-11-01T20:42:42.703-07:00Thankful ThursdayYesterday 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.<br />
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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!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikvEaDVgEib6vBjAgeqEwFbxTEIaondUomR0I09C4jDp0Inx-8yT4rUytXavSfWQJC20LRR7qZb0-dCZs2z_Xba7Stb6HvlaBlkXYDbTd65y1Hgiw5EMyaxcsxIwET8c2V_beAKMuNWRF2/s1600/DSC_1580.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikvEaDVgEib6vBjAgeqEwFbxTEIaondUomR0I09C4jDp0Inx-8yT4rUytXavSfWQJC20LRR7qZb0-dCZs2z_Xba7Stb6HvlaBlkXYDbTd65y1Hgiw5EMyaxcsxIwET8c2V_beAKMuNWRF2/s320/DSC_1580.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drinkin' all by myself....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjasP2a7CPojr-XtoxSRv9hAz7IVjFKtGOjpDkTRHjnM5xrTna5gMK1UpujUnVpYodiIjC8Ld-iJZkdI-ofpfgHN80Is-hKZ4MMbOoCGCNJlw0LH2G0M7hdT_2H4uxQHPoIDv9mJwjNX8dg/s1600/DSC_1582.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjasP2a7CPojr-XtoxSRv9hAz7IVjFKtGOjpDkTRHjnM5xrTna5gMK1UpujUnVpYodiIjC8Ld-iJZkdI-ofpfgHN80Is-hKZ4MMbOoCGCNJlw0LH2G0M7hdT_2H4uxQHPoIDv9mJwjNX8dg/s320/DSC_1582.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the more difficult twisty-hold-and-slurp<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVVdikUd9XKW6bME5von98gz21kll2WQW6wS8Nvj3R0efHa2rUiBY4GFzfC14SKJn4f89uebhsWRGghGRwcinvcXC-WwW0DFh28GvPfK1ONEGL9yn3K9qLQr2FyVBS8XMB8JG4wVnAHuel/s1600/DSC_1585.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVVdikUd9XKW6bME5von98gz21kll2WQW6wS8Nvj3R0efHa2rUiBY4GFzfC14SKJn4f89uebhsWRGghGRwcinvcXC-WwW0DFh28GvPfK1ONEGL9yn3K9qLQr2FyVBS8XMB8JG4wVnAHuel/s320/DSC_1585.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">don't even <i>think</i> about taking my cup</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Clapping for Himself - he's even proud about his straw skills!</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-2621177068848507582012-10-15T20:04:00.000-07:002012-10-15T20:04:14.463-07:00Good Advice for Fellow BloggersThis came across my news feed on Facebook and it seems like such smart advice, I just had to share...<br />
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<a href="http://www.roniloren.com/blog/2012/7/20/bloggers-beware-you-can-get-sued-for-using-pics-on-your-blog.html" target="_blank">Bloggers Beware - Unauthorized Photo Use</a></div>
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<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.flickr.com/photos/potzuyoko/6549346059/">http://www.flickr.com/photos/potzuyoko/6549346059/</a></td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-19630778397845741482012-10-15T15:50:00.000-07:002012-10-15T15:50:13.723-07:00More, 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!!<br />
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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.<br />
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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!!<br />
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-85940686959511571212012-10-10T18:34:00.000-07:002012-10-10T18:45:01.812-07:00Photo OpportunityToday, 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.<br />
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But when the moment comes to try to capture the moment for posterity, well... you can see for yourself.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIU3Kij3xtZBE7LjNIZV3tgidGkuZ1X6TN9eW3XunVh91nHk1gdcVF9No2KABvjVs5wl91r4Qm1D7pXmgqdgrDtcXLa_eeEwix7yNj6hyOh_91o0cw9YBPfBwSS2HqvJlYCyCJcybK9gTV/s1600/DSCN7853.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIU3Kij3xtZBE7LjNIZV3tgidGkuZ1X6TN9eW3XunVh91nHk1gdcVF9No2KABvjVs5wl91r4Qm1D7pXmgqdgrDtcXLa_eeEwix7yNj6hyOh_91o0cw9YBPfBwSS2HqvJlYCyCJcybK9gTV/s320/DSCN7853.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Well, this two-out-of-four is a start...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqYMoJ4NKEjxe9QtrdP3uXpw4qYScyjTyXhTTJaoVufoVw_Y4_GC9NsuyXwkhx633sjt-MJJG1x_sshXar_TKcVC3Nxck-Ezs6n2VAj1sjMKXAKzgy5RojKBs76ITi4EnEt_1HRiC860ui/s1600/DSCN7854.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqYMoJ4NKEjxe9QtrdP3uXpw4qYScyjTyXhTTJaoVufoVw_Y4_GC9NsuyXwkhx633sjt-MJJG1x_sshXar_TKcVC3Nxck-Ezs6n2VAj1sjMKXAKzgy5RojKBs76ITi4EnEt_1HRiC860ui/s320/DSCN7854.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No, you have to stay put</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIs99OZHSExgBbUELRhnD135S9Garnb_5wzewfYCKFY7TypnWeRxSg0VeOrT9swgBmlfwNBlF44T-_YhLIQ_dG4_LvD_kiaSsX1-fGWNHXqLxu5aHgqQWf0-u51Oy2GIsffK52Oo6hSTOG/s1600/DSCN7855.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIs99OZHSExgBbUELRhnD135S9Garnb_5wzewfYCKFY7TypnWeRxSg0VeOrT9swgBmlfwNBlF44T-_YhLIQ_dG4_LvD_kiaSsX1-fGWNHXqLxu5aHgqQWf0-u51Oy2GIsffK52Oo6hSTOG/s320/DSCN7855.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Where are we supposed to be looking again?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7ThNQXyrrjbTNfoHvO8nvi83rmrx6fX5lxkM5aWTSLNqtiWHGa3cda0fogQsszThpKEFsXUiVNmE8_DZ4EoXikbXJ3W-Ix0XJUHv-ylyPI1XYR4W8IXz6WK034XN548zFOnxm57U8Oa_j/s1600/DSCN7856.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7ThNQXyrrjbTNfoHvO8nvi83rmrx6fX5lxkM5aWTSLNqtiWHGa3cda0fogQsszThpKEFsXUiVNmE8_DZ4EoXikbXJ3W-Ix0XJUHv-ylyPI1XYR4W8IXz6WK034XN548zFOnxm57U8Oa_j/s320/DSCN7856.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wait! Come back...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilHSBkWCdSq8tWIVV3qkRu8ENkR_IzGXkAZUWj42xd_ZiTAu8HeWGilaYDkWi9Z1ExqwWRD0OvsZLPFclFdY0flEynH3YjJqg4reEvLOeazBOP92vOs2e86I98UgHJqJ-66FxPTP8tlxa2/s1600/DSCN7857.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilHSBkWCdSq8tWIVV3qkRu8ENkR_IzGXkAZUWj42xd_ZiTAu8HeWGilaYDkWi9Z1ExqwWRD0OvsZLPFclFdY0flEynH3YjJqg4reEvLOeazBOP92vOs2e86I98UgHJqJ-66FxPTP8tlxa2/s320/DSCN7857.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kids! Really...we've almost got it...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_zndT8780SyBEkgjuJiWwriFNeIuA-JtOFFB5zdcXABoSEkxl-eAqta4h9nFqVOYtMFwO3vxutxX2ZnSn57v0FAHpOSbKaF7TruWt_0HjvI1UYZ0MM03as9CsV5VuP4SiqwDS4MdgU_uN/s1600/DSCN7858.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_zndT8780SyBEkgjuJiWwriFNeIuA-JtOFFB5zdcXABoSEkxl-eAqta4h9nFqVOYtMFwO3vxutxX2ZnSn57v0FAHpOSbKaF7TruWt_0HjvI1UYZ0MM03as9CsV5VuP4SiqwDS4MdgU_uN/s320/DSCN7858.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aaand....better luck next time.</td></tr>
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Such are the perils of photographing the Littles. They're so cute, I almost didn't mind.Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-1484612513325890272012-10-05T19:45:00.003-07:002012-10-05T19:45:48.119-07:00Another New Adventure - for Trevor<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigumKeADdiNqaUy5j8BP43KqkaO-rWT8IYj6SPMrsr-fgYPl4AZCZnx4KJ7RZ7wzQMfbnzluBl8clA7GgxS1e4DqzFnnL4Sn6zpeo_RCWTRpoK_FW_G9U8FuR1AHPaEeIsS7UkR8EWhfs1/s1600/DSC_0720.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigumKeADdiNqaUy5j8BP43KqkaO-rWT8IYj6SPMrsr-fgYPl4AZCZnx4KJ7RZ7wzQMfbnzluBl8clA7GgxS1e4DqzFnnL4Sn6zpeo_RCWTRpoK_FW_G9U8FuR1AHPaEeIsS7UkR8EWhfs1/s320/DSC_0720.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Scouting is better than hanging out in a tree all day!</td></tr>
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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.<br />
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I found a blogger who lays this idea out very well. Enjoy the read...<br />
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<a href="http://life-with-aspergers.blogspot.com/2010/06/why-is-scouting-particularly-suitable.html" target="_blank">Why is Scouting suitable for kids with Asperger's (part 1)</a><br />
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<a href="http://life-with-aspergers.blogspot.com/2010/06/why-is-scouting-particularly-suitable_11.html" target="_blank">Why is Scouting suitable for kids with Asperger's (part 2)</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-48625744217004274332012-10-05T18:56:00.000-07:002012-10-05T18:56:51.272-07:0015 Months Old - an Update<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwm1F-OXHTVH8Fz2l3VJhtYx7wDm2eDaaqZhb1rvBaTsTguI2n5MGFvo030CswsHbvc4U2paI5Z1lihEr36RAv5I5sWQbBob9x_Na3EXaUZc76zh3tarQ7mqewRv8yDjbfAae41WpH_Ma/s1600/DSC_0707.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgwm1F-OXHTVH8Fz2l3VJhtYx7wDm2eDaaqZhb1rvBaTsTguI2n5MGFvo030CswsHbvc4U2paI5Z1lihEr36RAv5I5sWQbBob9x_Na3EXaUZc76zh3tarQ7mqewRv8yDjbfAae41WpH_Ma/s320/DSC_0707.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pondering, "is it too early to be a rock star?"</td></tr>
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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. <div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFGgvOsqMTjNeLWQUE_KheFwf2pB0-iXYQsZxZt6NmU8ngOdwMw3aTmkQKWsGVIFFXrd7wsaTFj9FRt97l2-vaFYf3-AAGMUNTWAFwOeJVuwsYN_tS94Mk6GRGvx9xLCWYDW3nIV8joa_y/s1600/DSC_0697.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFGgvOsqMTjNeLWQUE_KheFwf2pB0-iXYQsZxZt6NmU8ngOdwMw3aTmkQKWsGVIFFXrd7wsaTFj9FRt97l2-vaFYf3-AAGMUNTWAFwOeJVuwsYN_tS94Mk6GRGvx9xLCWYDW3nIV8joa_y/s320/DSC_0697.JPG" width="251" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">apparently, fishies are funny...</td></tr>
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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...</div>
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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. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK1oxVWNq0kaqVCoHXdkiyzUzoiPZg2KggatgKAf1zrB5Y7GjjmfzfYBSWJ7p-9UTghlcmp09XHKiX-dVB05-4tc_vqHsW82dKBcSmFiD-krghxz0zmMcAgfEA7_DckkVGkQJ4a0npqoOV/s1600/DSC_0762.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK1oxVWNq0kaqVCoHXdkiyzUzoiPZg2KggatgKAf1zrB5Y7GjjmfzfYBSWJ7p-9UTghlcmp09XHKiX-dVB05-4tc_vqHsW82dKBcSmFiD-krghxz0zmMcAgfEA7_DckkVGkQJ4a0npqoOV/s320/DSC_0762.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">some page-turning practice</td></tr>
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She checked his teeth and throat and managed not to get bitten. <b><span style="font-family: Georgia, Times New Roman, serif;">Doc: 1 - Levi: 0.</span></b> His upper molars are breaching the surface<span style="font-size: large;"> (ow!)</span> 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.</div>
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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. </div>
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He measured up at<strike> 31 inches</strike> (oops, try again, Nurse)... <span style="color: #0b5394; font-family: Times, Times New Roman, serif;">30 inches</span> (15th percentile) and weighed in at<span style="background-color: white;"><span style="color: #134f5c;"> 21 pounds, 1 ounce</span></span> (7th percentile). His head circumference is <span style="color: #134f5c;">17 3/4</span> 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.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiUyBaZDpCT6FuxYsOgkBBnyknO_5eTWa8lDqsKGkHL_t0wqS3jwHFq49YYcsdhxn8lZqQy316nluCYw0tzXnhrgT9jESzeZF8OBSpap-75ybewE9Rpvy0FrELOnKAb58wtYYMlutmj_2y/s1600/DSC_0749.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiUyBaZDpCT6FuxYsOgkBBnyknO_5eTWa8lDqsKGkHL_t0wqS3jwHFq49YYcsdhxn8lZqQy316nluCYw0tzXnhrgT9jESzeZF8OBSpap-75ybewE9Rpvy0FrELOnKAb58wtYYMlutmj_2y/s320/DSC_0749.JPG" width="320" /></a></div>
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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. </div>
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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.</div>
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I caught Levi practicing his proper standing techniques a little.... his standing used to always look like this:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4XJ8-FcsLTXl5dH3BUG7GwNmHPwL5KoXLz2lU1oFlI8uUkQVOhnzkBFlZl5ZdO92itPnw-OTCTm4PyjBMekBBMGFlOy2SP7GzFnSkjzwehbylT-6H3LTnql04JunbwK3rjcG9kr_99KW1/s1600/DSC_0764.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4XJ8-FcsLTXl5dH3BUG7GwNmHPwL5KoXLz2lU1oFlI8uUkQVOhnzkBFlZl5ZdO92itPnw-OTCTm4PyjBMekBBMGFlOy2SP7GzFnSkjzwehbylT-6H3LTnql04JunbwK3rjcG9kr_99KW1/s320/DSC_0764.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">notice the propping of the belly against the table</td></tr>
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Now, I'm starting to see more of this:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9hyphenhyphencYOoGMheP-YFmSt5OjT_BurBIoRNyYUo6yjTSr_G6X5GkzgzPyr_NbWI5-E_4L2j0zocCmahHyCzCIYsUSqqME1-RvpQUVDmNuVLp_EcwCT3U5VYitN_yf6OKo3UqC_Mj356p7yfny/s1600/DSC_0765.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9hyphenhyphencYOoGMheP-YFmSt5OjT_BurBIoRNyYUo6yjTSr_G6X5GkzgzPyr_NbWI5-E_4L2j0zocCmahHyCzCIYsUSqqME1-RvpQUVDmNuVLp_EcwCT3U5VYitN_yf6OKo3UqC_Mj356p7yfny/s320/DSC_0765.JPG" width="214" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Space between the tummy and the table; <br />he's working the core and leg and butt muscles here. Yay!</td></tr>
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Late breaking news... got an update from the endocrinologist. Levi's TSH (thyroid stimulating hormone) is down to<span style="font-family: Georgia, Times New Roman, serif;"> <b>3.23</b>.</span> The last test he had was<span style="font-family: Georgia, Times New Roman, serif;"> <b>6-point-something</b></span>. Prior to that, it was <b><span style="font-family: Georgia, Times New Roman, serif;">11.6</span></b>. 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!</div>
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Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-61745780763012221312012-10-03T17:41:00.001-07:002012-10-03T17:41:46.445-07:00(almost) Wordless Wednesday...<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5xuER8bI-JShrUNQdMMC9C3KqLfAPls6STguKa5w_OEcGbipaP32vTuZwUJdDPUAMhsYPA8SsglRSCoGmUiaT6My1HT_2q7WlM4rUS0KhujxDw7R9NIh_KbN4nGyprAmH8MeRlYA4wJk8/s1600/DSC_0625.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5xuER8bI-JShrUNQdMMC9C3KqLfAPls6STguKa5w_OEcGbipaP32vTuZwUJdDPUAMhsYPA8SsglRSCoGmUiaT6My1HT_2q7WlM4rUS0KhujxDw7R9NIh_KbN4nGyprAmH8MeRlYA4wJk8/s320/DSC_0625.JPG" width="278" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I've got this "fork" thing licked!</td></tr>
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At 15 months old, Levi is learning the Jedi ways of flatware... he's an expert at using a pre-loaded utensil. But he needs a personal retriever as they always get kicked to the curb after each bite!</div>
Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-91211815532767045232012-10-01T08:24:00.000-07:002012-10-01T08:24:02.704-07:00Down Syndrome Awareness Month has Arrived - A Look Back<br />
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<span style="color: #a64d79; font-family: Verdana, sans-serif; font-size: small;">October is Down syndrome Awareness Month. Some bloggers will be participating in a marathon blogging session called: 31 for 21, where they blog about Down syndrome (Trisomy 21) for the entire month (31 days). Not me! *insert sheepish grin* I would love to be all that I can be and blog every day...but it just ain't gonna happen for this girl, this year. So... I solemnly vow to blog as much as possible this month... and since today is the beginning of the month, I wanted to take a look back at the beginning of my life with Down syndrome. </span></h3>
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I wrote this post on August 12, 2011, when Levi was just 6 weeks old. My perspective has changed a lot since then, but when I re-read this, it brings back all those emotions I was experiencing - like it was yesterday. Maybe you can feel it too? </div>
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<tr><td class="tr-caption" style="text-align: center;">Excuse me, my Mama has something to say...</td></tr>
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Looking for a Silver Lining in the Darkness</h3>
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The day little Levi was born was one of the best of my life. But a dark shadow crept into my heart at the moment I first saw his face; I tried to push it away and focus only on the bright spot - the little angel that had surprised us by arriving three weeks early. </div>
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<br /><br />In the moment I first saw my baby's precious face, I also saw something which terrified me. Upturned eyes, a little fold at the inside corner of the eyes and thickened skin at the back of the neck - they immediately made my thoughts turn towards Down syndrome. "Oh no!" I thought and my heart sunk. I silently chastised myself for being so critical of this tiny human being and made myself forget about that worry for a few hours. The midwife will surely say something if it was a possibility.<br /><br />After all the examining was done, she hadn't voiced any concerns about him or his health. She gave him Apgar scores of 8 and 9 and left with full confidence that everything was right in our world. I decided to keep my mouth shut about my concern; I would research it further before mentioning it to hubby as I didn't want to seem like I was overreacting. </div>
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<br /><br />The next morning, hubby remarked that something looked "off" about Levi and I couldn't help but respond that yes, I thought so myself and that I think he looks like he has Down syndrome. I tried to appear calm, like I wasn't a whirlwind of terrified emotion inside, but I don't know if I was successful. Once I had given life to my fear, it became an obsession that possessed me until the midwife returned when Levi was 3 days old.<br /><br />She examined him again, this time mentioning the single palmar crease on both of his little hands. I told her that I had read they might be associated with Down syndrome and she replied that they could be, but that they're associated with a variety of different genetic syndromes. I wanted to ask if some were worse than Down's, but was afraid of the answer. Levi was somewhat jaundiced at that point and so we talked about trying to get a phototherapy blanket from our pediatrician. I thought that if we needed to see the doctor, then we should get a blood test done at the same time to rule out or confirm a genetic syndrome.<br /><br />To the midwife, I pointed out all the characteristics I had found on Levi which indicated Down syndrome: the upward slanted eyes, a flattened nasal bridge, epicanthal folds, double single palmar creases, a sandal gap on both feet and a misshapen pinna of the outer ear. I was hoping beyond hope that she'd somehow be able to dismiss all or most of these characteristics as being attributable to being borderline premature or just coincidental. She didn't. She pointed out that his muscle tone was pretty good; whereas, most infants with Down syndrome have hypotonia (low muscle tone) and she said that there was only one way to be sure. </div>
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<br /><br />So we went to the hospital for a blood test to find out whether Levi needed treatment for jaundice (it turned out he didn't) and I continued to panic silently about the flaws of my no-longer-perfect little boy. I'd hold it together for a while and then I'd just fall apart, crying until my head hurt. I haven't felt heartache like that since the days when Katelyn was hospitalized after her birth and I honestly felt like she might never come home to us.<br /><br />But this was different; Katelyn's issue was simple and resolved. This (probable) diagnosis lingers and festers forever - or so I thought. We had blood drawn for a karyotype the next day. The nine days we had to wait to get those results were some of the worst in my life. I wanted to keep talking about it with hubby, to work through all my concerns. I felt like if I gave voice to them, they'd seem more irrational and less scary. But hubby and I are different people who approach these things differently. He didn't want to deal with the issue until we knew for sure that Levi's test was positive.<br /><br />Thankfully, I have wonderful friends who found a sensitive way to reach out to me to find out what was going on and if we were okay. They were a sounding board for me for several days and helped me hang on to a bit of sanity in an otherwise insane moment for me. And while all of this was going on, I'm trying to make myself take time to enjoy the newborn phase with Levi. I know that this is my last baby and that I will regret it immensely if I look back and only remember the darkness of these days. After all, despite whatever genetic flaws this little person might have, they are not his fault and they do not change who he is. He is my son and I love him intensely. I just have to come to terms with the inevitability of this diagnosis. </div>
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<br /><br />On July 5th, I call the doctor's office and confirm with the nurse that the blood test results are back. She says she will have the doctor call me and so I wait. Finally the phone rings and with trepidation, I answer it. I don't want to because hubby is at work and I don't want to be the only one to know. She says the words I know are coming, "The results are positive for Trisomy 21, otherwise known as Down syndrome." But knowing they're coming doesn't make them sting any less. When hubby walks in the door less than an hour later, he looks at me and I start crying and he knows. He is able to console me and once again, he is the stoic one, my rock which I can lean on when life gets so hard.<br /><br />Amazingly, this is a turning point for me. The <em>not</em> <em>knowing</em> was so much harder than this. We start seeing specialists and confirm that aside from a slight heart murmur and a small atrial septal defect known as a patent foramen ovale (PFO), he currently has no physical complications as a result of his extra chromosome. The cardiologist wants us to return when he is nine months old to verify that the murmur is gone as he expects and to evaluate whether the PFO has resolved or at least stayed the same size. The opthomologist only detects farsightedness, which is normal for such a young infant and so we're to return at the age of six months for another checkup. The genetic specialist gives us a whole collection of information, which is mostly overwhelming and is still sitting in it's envelope to be addressed at a later time.</div>
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<br /><br />Right now, we know that we have a little boy who has three siblings who adore him. Even little Evan, so sometimes appears jealous of Levi seems to care for him enough to drop toys onto him from the other side of the pack-n-play! Katelyn loves to mother him and protect him from Trevor; Trevor loves to tell people how cute baby Levi is. Levi is one lucky little boy because he has a mother and a father who will do anything to help him succeed and despite our forboding and fear of the unknown which lies in wait for us, we are determined to help him achieve whatever his maximum potential may be.</div>
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<br /><br />We're still dealing with the shock of this unexpected diagnosis; some days are harder than others. The process is like sorting through the stages of grief. There was denial and anger, bargaining and a form of depression. Eventually acceptance is reached and I don't know that we're fully there yet. We're getting closer every day and seeing Levi's personality emerge only reinforces our love and our determination. </div>
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<br /><br />With taking action, particularly in getting Levi enrolled in Early Intervention to begin physical therapy services, I feel less helpless - less like this is something that has <em>happened</em> to us. I can see a little bit of Levi's personality beginning to emerge and the more I see, the more excited I get about the prospect of our future as a family. I am starting to adapt to our new normal (though I'm sure it will be ever-changing) and realize that although it may be somewhat different than what I initially envisioned, it can still be great! He gives me courage... </div>
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Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com2tag:blogger.com,1999:blog-7186778518510231264.post-71300936121068265532012-09-30T11:14:00.003-07:002012-09-30T11:14:35.968-07:00Who likes the Playground? These kids...I have an excuse for every season. Winter? Too cold. Spring? Too rainy. Summer? Too hot. Fall? Umm... well, okay - let's go...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnjrWz35CAloLVkieOOnBuTNWGHm_0blC22zFeu0oxNN358jNfO9Lkwta0QIFBgv8Oimov6ynNsJlDp0R39_tCN0KKhSmQr-COIVOw2PlM-Qq7dwkReZMe_xadS9GZbywFH8vYVeNz5bGp/s1600/DSC_0516.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnjrWz35CAloLVkieOOnBuTNWGHm_0blC22zFeu0oxNN358jNfO9Lkwta0QIFBgv8Oimov6ynNsJlDp0R39_tCN0KKhSmQr-COIVOw2PlM-Qq7dwkReZMe_xadS9GZbywFH8vYVeNz5bGp/s320/DSC_0516.JPG" width="320" /></a></div>
I swear, it is fun to take the kids to the playground. They always have a great time. The older kids are often making random friends (usually someone they've seen around school before) and everyone gets some exercise and burns off some extra energy. That's all good, right?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMxiHBE-_-eCg20S9sZDtVthpa1hV1wsFoJJHy-jvG77K3EsTen1ozKxxs3XY6km6rMMNUdKt6tVm4rOYbTlPPL2h4mDTGk3Lhbxi41fVB4S8DdZnT0BQdp6b3-v1DZ6bMYmRZV8Wvm2tw/s1600/DSC_0521.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMxiHBE-_-eCg20S9sZDtVthpa1hV1wsFoJJHy-jvG77K3EsTen1ozKxxs3XY6km6rMMNUdKt6tVm4rOYbTlPPL2h4mDTGk3Lhbxi41fVB4S8DdZnT0BQdp6b3-v1DZ6bMYmRZV8Wvm2tw/s320/DSC_0521.JPG" width="214" /></a></div>
The issue is that it's REALLY hard to keep track of a 2 year old and a 1 year old at the same time. Especially when said 2 year old wants to do things the older kids are doing and the 1 year old only wants to lick the ground... So, more often than not, it's the backyard "playground" for us!<br />
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But yesterday was a beautiful day worthy of a trip to the playground. And since my extra adult (hubby) was on hand, it was a breeze... So I'm pretty sure that this counts as Levi's first "real" trip to the playground. In the past, he was sleeping, or didn't actually use any of the equipment or just hung out in the stroller or carrier. He had a great time, as did everyone else. I may actually look forward to going back.. next Spring!<br />
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<tr><td class="tr-caption" style="text-align: center;">Hey you... I see you over there!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">How do I get out of here?</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Investigating Shadows</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Evan's favorite item - the covered slide</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Making music - he loved this "xylophone"</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">GQ, here I come!</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-86129365399880751772012-09-18T18:44:00.001-07:002012-09-18T18:44:41.431-07:00GO TEAM!! The Buddy Walk is almost here! <span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 15px; line-height: 20px;">Family and Friends... October is almost upon us! For many, this brings to mind things like pumpkin-picking, apple cider, hayrides and trick or treating. But October also means Down syndrome awareness month. Last year, Terrific Team Turner raised over $270 to benefit the York Area Down Syndrome Association and the National Down Syndrome Society. The funds raised benefit local families living with Down syndrome and support the NDSS in their mission, which is: "to be the nationa</span><div class="text_exposed_show" style="background-color: white; color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 15px; line-height: 20px;">
l advocate for the value, acceptance and inclusion of people with Down syndrome." This year, our goal is to raise at least $400. With your help, we can do it!!<br /><br />In the last 15 months that we've had the pleasure of having Levi in our lives, our family has become ever more aware of the importance of acceptance and inclusion for everyone. The Down syndrome community needs the support of people like you so that those living with Down syndrome can have an opportunity to lead fulfilling lives and give back to the community in their own valuable ways.<br /><br />This year, Terrific Team Turner is fundraising and participating in the 8th annual Buddy Walk for the YADSA on Saturday, October 13th. If you are able to make a charitable donation in Levi's name, please visit our firstgiving page. Every person matters - every penny counts! Thank you for your love and support!<br /></div>
<a href="https://www.firstgiving.com/fundraiser/TerrificTeamTurner/8th-annual-YADSA-buddy-walk" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 15px; line-height: 20px; text-decoration: none;" target="_blank">https://www.firstgiving.com/fundraiser/TerrificTeamTurner/8th-annual-YADSA-buddy-walk</a><br />
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I've failed miserably at keeping this blog current since Levi's birthday (Facebook is a lot easier for me to keep up with!) so some recent shots of the aforementioned cutie pie doing his thing...<br />
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<tr><td class="tr-caption" style="text-align: center;">double duty: crawling practice AND trimming the grass!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">giggle-mania</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">crazy reaction to his first taste of brownie goodness!</td></tr>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/cKgx9EBCJKk?feature=player_embedded' frameborder='0'></iframe></div>
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Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-37367677505562708632012-08-04T20:46:00.000-07:002012-08-04T20:57:38.388-07:00Gearing Up for a MarathonI've complained before that lack of time is what keeps me from posting more often. It's certainly not for lack of things to write about. For a few weeks, I've had this feeling like I'm working hard to just stay ahead of the tidal wave of stuff-to-do stacking up behind me... and suddenly I realize the summer will be over in 3 short weeks! Oh no - so much to do before then!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3SlJNmJlqJRXpz9Ckf-p9VD-cKZicbOCQi8n0zSuVT60IsArBWz7bIMUX8Uz80QlnZGeLSjjZquaMFUf8sXgwHsuzJU2dMfnbomYI6h9EROOR8WsDRWqrQZPqJXk8crTLPoobhBVEeJAK/s1600/2012-07-13_09-27-47_667.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" eda="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3SlJNmJlqJRXpz9Ckf-p9VD-cKZicbOCQi8n0zSuVT60IsArBWz7bIMUX8Uz80QlnZGeLSjjZquaMFUf8sXgwHsuzJU2dMfnbomYI6h9EROOR8WsDRWqrQZPqJXk8crTLPoobhBVEeJAK/s320/2012-07-13_09-27-47_667.jpg" width="240" /></a></div>
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Katelyn and Trevor just finished up their last week of summer camp. They attended a total of three weeks, spread out over the entire vacation, and really enjoyed themselves immensely. They had some great field trips and made new friends all at once. They're already looking forward to doing it again next year!<br />
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This next week has a lot of craziness in store for us - multiple outings with the big kids to amusement parks and activities to include rolling down a hill in a giant inflatable ball filled with water! Oh yeah! <br />
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<tr><td style="text-align: center;"><a href="http://www.skiroundtop.com/ogo1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" src="http://www.skiroundtop.com/ogo1.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I rolled down the giant hill in this H2OGO ball! <br />
It's 11 feet across - the inner ball is 6 feet in diameter and <br />
you can bodysurf with up to 3 people & about 5 gallons of water! It was FANTASTIC (and chilly)</td></tr>
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Before the end of summer, we've got our longest road trip yet and then multiple birthday parties (including Trevor's birthday activities) right before school begins. It will be interesting to see how we've held together by the time that first school bell rings.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4IhZtqX9NRpTy-zZr8cg1l5ulEcILNQTB9NJcYOmnTs17SIzIF8z4hELwOrlC8A3cljP00ZZvHpWQYrZATVDxJ0d-S99gtfo0pOcCNFI98DtVjKeEtfph8i-wF9-XuhPy-tbklCu9vz-u/s1600/2012-07-18_10-15-42_814-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4IhZtqX9NRpTy-zZr8cg1l5ulEcILNQTB9NJcYOmnTs17SIzIF8z4hELwOrlC8A3cljP00ZZvHpWQYrZATVDxJ0d-S99gtfo0pOcCNFI98DtVjKeEtfph8i-wF9-XuhPy-tbklCu9vz-u/s320/2012-07-18_10-15-42_814-1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evan truly enjoys his fashion accessories</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp0BhzpUKk07RlzW2dWd59xIDGLuRMlSEQzkQIbbpWD-sTucr4ZR4M_Q9Xk0s2RszOYgiuarfBzjUpTJUrdi_GH0yKLCnARZwjujqsyoCSmdvgP8s9vNKE8ncRmb294LxPud-CYyyFjXBw/s1600/2012-07-18_15-22-51_632.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp0BhzpUKk07RlzW2dWd59xIDGLuRMlSEQzkQIbbpWD-sTucr4ZR4M_Q9Xk0s2RszOYgiuarfBzjUpTJUrdi_GH0yKLCnARZwjujqsyoCSmdvgP8s9vNKE8ncRmb294LxPud-CYyyFjXBw/s320/2012-07-18_15-22-51_632.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being a cat truly is a difficult job. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBZYuh6lwmScrGWK5BG1JY8RCtu5H9il6C2u-6At1aB4-eyRFqUANS-R4h_HKQAzxXg3DfMxi-R1Ja23roP4k67bOOQUusBYQMobj9infj10dN8rssIe8vuGnptxd5M33AtA6KwnovKO45/s1600/2012-07-18_18-02-23_317.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBZYuh6lwmScrGWK5BG1JY8RCtu5H9il6C2u-6At1aB4-eyRFqUANS-R4h_HKQAzxXg3DfMxi-R1Ja23roP4k67bOOQUusBYQMobj9infj10dN8rssIe8vuGnptxd5M33AtA6KwnovKO45/s320/2012-07-18_18-02-23_317.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Hey there, Handsome!" Enjoying a fully self-fed meal...</td></tr>
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In the meantime, Levi has been keeping us (and by us, I mean <strong>me</strong>) very busy this last month. We returned from vacation several weeks ago and he bumped the back of his head in a fall. It was very minor and didn't seem to have any lasting effects; however, two days later he begain having spells where his eyes would cross momentarily and his head would drop slightly and pull to the left. It appeared to have come on suddenly and was happening almost constantly, about every two minutes. Because it began on a Friday evening, his pediatrician suggested just monitoring it and reporting to them on Monday morning - as long as it wasn't accompanied by any other symptoms which would be concerning, like vomiting or fever or convulsions. It stopped for about an hour before he went to bed and so we decided to let it go and see how he was doing the next day. <br />
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The episodes happen 3 times (around 0:30, 1:10 and 2:47) </div>
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but the last is the easiest to see.</div>
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The next morning was fairly uneventful. He had a few of the spells, but nothing at the frequency with which they were occuring the day before. Once he got up from his afternoon nap, however, they were happening almost constantly again. I had several of them on video and decided it would be safer to take him to the emergency room for evaluation. We got there around 7:30 pm and finally got to see the doctor around 8:30. He was given some medication to sedate him (Versed) so that they could rule out tumors or a head injury with a CT scan of his brain. They also completed a round of blood tests to check for infection and what not. Since they wanted to start an IV anyway, this ended up not being too big a deal. It was only one stick with the needle and they were set. As a bonus, they were able to check his thyroid levels and complete a test for Celiac disease, which his GI doctor had ordered at the beginning of June but we weren't able to complete because he was dehydrated previously due to his teething complications. <br />
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Finally around 11:00 pm, Levi gave up on enjoying his medicated state... (yes, that baby was "higher than the Empire State")... and they were able to do the CT scan. Both the labwork and the CT came back negative, so the pediatrician thought it would be best for Levi to see the neurologist and have an EEG to rule out seizure activity. Unfortunately, the hospital we went to doesn't have a pediatric neurologist. So we were transfered to a nearby children's hospital at 3:00 am via ambulance. It was definitely the quickest ride I've ever had between the two cities!<br />
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We finally got settled into our room around 5:00 am (after meeting the nurses and on-call doctors). Around 8:00, I was feeding Levi breakfast when the eye thing started happening again. It stopped the night before because of the Versed - it calms the neurological activity. The nurses saw it and then the pediatrician at the new hospital stopped by during rounds. She took one look at Levi and got his history and told me that she didn't think it was seizures and that it was probably just strabismus (crossed eyes). She felt he should have an opthomologic workup before having an EEG and seeing a neurologist. That is apparently the downside of being in the hospital on a Sunday. There is no staff available for the EEG and the neurologist mustn't want to be bothered without the test to review the data. So... we were discharged without seeing a neurologist, which is the whole reason we were transferred to the hospital in the first place.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCLCXj_67UJiTLXU34E6BOUS3njC7YXTIxeZcLJgjy66hlqTNTfFCLzzmct0aYZTcCQjmAxgAWcDVSmzKi-gRNlssZoEQckEZDY8I0gjCY6UBUeMG-DPY7De9zc7J5mnZ0IFxcDCFZbykt/s1600/2012-07-22_10-00-51_880.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCLCXj_67UJiTLXU34E6BOUS3njC7YXTIxeZcLJgjy66hlqTNTfFCLzzmct0aYZTcCQjmAxgAWcDVSmzKi-gRNlssZoEQckEZDY8I0gjCY6UBUeMG-DPY7De9zc7J5mnZ0IFxcDCFZbykt/s320/2012-07-22_10-00-51_880.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looking forward to getting out of that hospital crib!</td></tr>
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As luck would have it, Levi already had his semi-annual appointment with his pediatric opthomologist scheduled for the following day. We went to that appointment and the doctor confirmed that Levi does have strabismus; however, it's a symptom, not the underlying cause and so he couldn't rule out seizure activity as the 'why' behind the activity. He did recommend we follow up with the neurologist.</div>
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I called the pediatrician's office back to get the referral to the neuro and was astounded when the neuro called me back with an appointment for 2 days later. That's almost unheard of! Once we were at the neurologist's office, he provided some relief by explaining that he felt - based on the videos I showed to him and the history given - that this probably is NOT seizure-related. He explained he felt the diagnosis would probably end up being Spasmus Nutans, which is essentially a harmless condition. It is a triad of symptoms which normally occur together (although all three don't have to be present for it to exist). Strabismus - check. Head tilt - check. Nystagmus (jittery, side to side motion of eyes) - no. Thankfully, it doesn't require any treatment and most children outgrow/develop out of the condtion by age 3. That was definitely good to hear. <br />
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Unfortunately, the only way to arrive at a diagnosis of Spasmus Nutans is to rule out everything else, which meant that Levi still needed to have an EEG and an MRI to view the lower portion of his brain and the brain stem. The next day, we received a call to attend the EEG - another huge surprise. My understanding is that most people end up having to wait a week or two to have that test completed on an outpatient basis. Levi did pretty well with that test. They wired him up once he was asleep and he made it a whole three mintues after waking up before he pulled all the leads off. Unfortunately, he didn't have any episodes while he was awake and hooked up to the machine. The technician who performed the test said that if it is seizure, it often will appear in sleep - so even if it didn't happen while he was awake doesn't mean the test wouldn't catch seizure activity. Good to know. At this point, we still haven't heard back on the results of the EEG. I presume this is good. Bad news usually travels more quickly. <br />
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<tr><td class="tr-caption" style="text-align: center;">Blissfully Unaware</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">his usual, cheery self - even after ending up with some nasty bed-head from the goop for the EEG</td></tr>
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We are still waiting to have the MRI. It's not scheduled until almost the end of summer vacation, but I'm okay with that. I feel very confident in the assessment of the neurologist and Levi hasn't been having nearly as much activity as he did those first few days. It's still going on, but it's a lot less scary now!<br />
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In other news, I'm glad I asked them to check Levi's thyroid back in the emergency room. It turns out that Levi's TSH level was up to 11.6. The "normal" range is from 0.35 - 5.5. His bloodwork at age 4 months was at 5.85, but the T4 levels were good, so they weren't concerned. Around 6 months of age, he started having several symptoms of hypothyroidism but it was mostly chalked up to the Down syndrome diagnosis and related conditions such as low muscle tone.<br />
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People with Down syndrome have a higher incidence of developing hypothyroidism. Some doctors will say it's less a matter of "if" and more "when" the thyroid will begin to fail. On top of that, we have a family history of hypothyroidism and so I've tried to be even more diligent about monitoring for problems. I'm very glad I stayed on top of this issue. We managed to get in to see his endocrinologist and he agreed to start treating him with the same medication I've been taking for the last 15 years. I can't wait to see how he's feeling in the next couple of weeks as the medication starts to take effect!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIi1vdwjJqJp4mo6LfABXpeN9HBNNiROqmvO5zC-zMRiPCSWHMBksLjckoOwoX_trunaERqIrTmm344IAg-ai3Tfl1dSLAFU8TBbLKv94j5bzkHmP9VTEgt0vL0h90VT6FdpapxVXKPrdN/s1600/2012-07-27_10-59-28_218.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIi1vdwjJqJp4mo6LfABXpeN9HBNNiROqmvO5zC-zMRiPCSWHMBksLjckoOwoX_trunaERqIrTmm344IAg-ai3Tfl1dSLAFU8TBbLKv94j5bzkHmP9VTEgt0vL0h90VT6FdpapxVXKPrdN/s320/2012-07-27_10-59-28_218.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peek a Boo!</td></tr>
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As if that wasn't enough - Levi barely recovered from his major teething fiasco before he started getting FOUR more teeth! His lateral incisors (the ones next to the front teeth) are all coming in at once. I can see the outline of the upper teeth through the gums - ouch! And the little pits which open in the gums before the teeth come through have appeared on the lower jaw. Poor guy. Thankfully, he already has his amber teething necklace in place and so far he's not suffering nearly as much as he did with the last two teeth. I'll keep my fingers crossed that he doesn't get hit with the congestion that plagued him last time. That was awful and we have no desire to deal with that again!<br />
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This past week, Levi was fitted for Sure Steps, which is a system of ankle/foot braces for kids who need extra support in that area. It looks like a little molded-plastic boot which closes with velcro straps. It is worn under socks or shoes and compensates for the hypermobility in his ankles. I've heard so many good things about kids who get these and how they just "take off" with their motor skills once they feel more secure in their positioning. I sure hope that's the case for him as well...<br />
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<tr><td class="tr-caption" style="text-align: center;">Ta-Da! I'm standing!!</td></tr>
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Despite not yet having the braces, Levi has accomplished a great thing this week. Just today, he pulled himself to a standing position in his crib, without any help at all! He hasn't been able to do that before because even though he has the muscle strength and the knowledge of <em>how</em> to do it, his ankles just roll out from under him when he tries to do it. But he's figured it out... AND he did it on the floor too, using the frame of his brother's toddler bed! Hooray! I can't wait to see what he accomplishes when the braces arrive in another 3 weeks or so...<br />
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Additionally, he decided to start experimenting with some alternative crawling techniques this week. In the bathtub, he did do some quadruped crawling, which was a first. But once he took it to the floor, it turned into a three-point crawl, with only one knee on the ground and one foot too. I guess it's half crawl - half scoot. He's only done that just a very short distance. About 18 inches between him and the couch - any more would probably have been too intimidating!<br />
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Levi's First Three-Point Crawl</div>
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Levi had a DAYC evaluation recently with Early Intervention (gearing up for his annual review). His greatest deficit was in language, which came in at 8 months - with his actual age being 13 months. That's only a 29% delay. If he didn't have the diagnosis of Down syndrome, he would need a 25% delay to qualify for therapy with Early Intervention, so he would only just barely qualify. I would say that considering he's had no speech therapy to date, that's pretty good! At least, I'm proud of the work we've done in that respect. <br />
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On the other hand, we recently had a speech therapist on hand as Evan was receiving a consult. I explained that it had been recommended to us to wait until Levi was 18 months old to begin speech (I guess because that's when typical kids are expected to begin having their "language explosion") - but that I was concerned he might be awfully far behind if we waited that long. She expressed that her opinion is to begin as soon as possible for the best possible outcome. So needless to say, I immediately informed Levi's service coordinator that I want to add speech to his therapy regimen when we do his review this month. <br />
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That means committing to three hours of therapy per week just for Levi - and another hour every other week for Evan. That's a lot of work for one mama. But we've incorporated everything into our schedule thus far - I'm sure it won't take a lot of adjustment to make it work for us in the future. Once school starts again and our schedule settles down a bit, it won't feel quite so hectic, I think. <br />
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I should also mention that Levi has been picking up a lot of smaller skills as well. He clearly has an understanding of object permanence as he's been dropping toys and other items off the side of his high chair for at least 2 months and then looking over the side to see where they've gone... He also has gotten better about looking for toys hidden beneath a blanket during playtime. He laughs when you play peekaboo with him and turns the pages of books when you prompt him by saying, "turn the page," and sometimes wiggle the page itself for a second. He has also learned to clap and is very enthusiastic about it. Take a look...<br />
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He had his first boating experience at Lake Raystown last month and enjoyed it very much. He took a great nap and lapped up a little lake water (before we could stop him). All in all - it was a great day for him! He also had his first beach vacation in Brigantine/Atlantic City, NJ. Lots of fun there too. He had yummy handfuls of sand when Mom wasn't looking. Ick!<br />
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<tr><td class="tr-caption" style="text-align: center;">Naptime on the Lake</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Apparently boating is hard work!</td></tr>
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Various Beachy Photos - Brigantine Beach, NJ</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS8OwBri1kRymJ27x0OP9yX5ATy24H0OHm_poY6jSzwCgUJp9I5MpsmmPnPQ2e36SzUT7Vbsdo26uwhA_XtIgIMJUpTdNzPLEgkqeX0B_r8FuwSHzC0dmU9pyEExuKXmIqfr25gSXYmWMQ/s1600/2012-07-16_11-45-43_983.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" eda="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS8OwBri1kRymJ27x0OP9yX5ATy24H0OHm_poY6jSzwCgUJp9I5MpsmmPnPQ2e36SzUT7Vbsdo26uwhA_XtIgIMJUpTdNzPLEgkqeX0B_r8FuwSHzC0dmU9pyEExuKXmIqfr25gSXYmWMQ/s320/2012-07-16_11-45-43_983.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7JkNVNEyEzmF6KxtHLDBpwoM6NM4gz7RdPD3cNcAQ0QXHqH1vtIXsNdPm9ScT56jdbPsfA8QE03MpxJOihSDDGqLzBXfxft_0HjhdGtxTXJ3xoHHVd9LeEc1VV099jr8SN7ceK7IReaDd/s1600/2012-07-16_11-46-01_607.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" eda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7JkNVNEyEzmF6KxtHLDBpwoM6NM4gz7RdPD3cNcAQ0QXHqH1vtIXsNdPm9ScT56jdbPsfA8QE03MpxJOihSDDGqLzBXfxft_0HjhdGtxTXJ3xoHHVd9LeEc1VV099jr8SN7ceK7IReaDd/s320/2012-07-16_11-46-01_607.jpg" width="320" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">Splashing in the Waves</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The View from the Top of Lucy the Elephant in Margate City, NJ</td></tr>
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When we got home from vacation, I tried to give him a slight trim - but lopped off far too much hair and so hubby convinced me to take the clippers to his head. It was awful (for me) but in the end, Levi looks adorable. I think my main issue is he definitely has a big-boy haircut now and I wasn't ready for that. He definitely looks older now and it's hard to accept that. </div>
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<tr><td class="tr-caption" style="text-align: center;">The New 'Do!</td></tr>
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We've got so much more to look forward to the rest of this month. By the time Levi is 14 months old, I'm sure I'll have a TON more to write about. In the meantime, Levi will keep chugging his chocolate milk. Maybe soon it will be out of a sippy cup instead of a bottle. We'll see... come back soon for more!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeg9x7oxjrvepkRZ8Y7ONKwFMwO3xlbsqf8DGTGfeireVOmDkmXoF2ckxZmTRVtMb0LMxa-m__Nr7YLNAVUBLX_FqXW3AlfqJoeJ1YM9yVSSMTtjg67eb9_chmaJMyVUtaIOZcEyMeE7dB/s1600/2012-07-24_13-01-44_53.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" eda="true" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeg9x7oxjrvepkRZ8Y7ONKwFMwO3xlbsqf8DGTGfeireVOmDkmXoF2ckxZmTRVtMb0LMxa-m__Nr7YLNAVUBLX_FqXW3AlfqJoeJ1YM9yVSSMTtjg67eb9_chmaJMyVUtaIOZcEyMeE7dB/s320/2012-07-24_13-01-44_53.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">13 months old ~ 29 1/4 inches ~ 20 1/2 pounds</td></tr>
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Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-11957682846131717472012-07-30T20:04:00.000-07:002012-07-30T20:04:48.334-07:00The Next Big ThingFirst, my apologies to Levi's fans. I have been a major blog slacker. I admit it freely and although I have some things to write about bopping around in my head, the time needed to put it into words is just beyond my reach these days - specifically because of the things I want to write about. My guess is that we'll have one huge update somewhere around the time the big kids head back to school and I actually get a few moments to myself during the day. Until then, I'll leave a few crumbs around to tide you over.... <br />
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Drum roll, please........<br />
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Levi FINALLY decided it's time to crawl without his belly on the ground. Where does he make this big-time decision? In the bathtub of all places! Do I have a fabulous video to show off this new skill? Yup. Is it public-viewing worthy? Barely - sadly there is naked baby butt all over the place and I just can't predict whether Levi will be disappointed in me (20 years from now) if I post it here. So I quickly added a diaper for a little modesty and requested a repeat performance. He obliged - barely. But I have evidence, which is all that matters! <br />
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Of course, after the bath, he continued the odd-ball crawl across the kitchen floor sans diaper. Again - no video I can share publicly. Yes, I'm pouting... but I'll get over it because I know this awesome little boy will keep on practicing until I can't remember what he looked like doing his patented inchworm "crawl-drag". <br />
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Go, Levi!!!Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-34128366934118669082012-07-12T17:48:00.000-07:002012-07-12T17:48:13.758-07:00Movin' on Up!For months (it seems), we've been focusing on trying to get Levi to assume the quadruped position. He's hated it from the beginning, but is slowly becoming more accepting. In fact, lately, he's been doing it on his own for a few seconds at a time! Of course, this is completely in stealth-mode only and it's taken forever to capture it on film. I've even witnessed him doing the tiniest bit of rocking while in this position. This was only possible to observe because I was entirely hidden behind the nearby furniture, using a complex system of mirrors to reflect his image back to me. If he'd have known I was watching, it never would've happened...<br />
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<tr><td class="tr-caption" style="text-align: center;">So this is what they've been requesting for months? No biggie...</td></tr>
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But when did this development come along? When Levi has become more interested in standing, of course! His progress never makes any sense to me... but mine is not to question why, I suppose!<br />
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So now that all he wants to practice is pulling to a stand, the standing is leading to other things, including the instinct to lift his feet and practice stepping. I find this immensely exciting; therefore, this little video...<br />
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<object width="320" height="266" class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="http://i.ytimg.com/vi/S5K_vrYDSj4/0.jpg"><param name="movie" value="http://www.youtube.com/v/S5K_vrYDSj4?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="http://www.youtube.com/v/S5K_vrYDSj4?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
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Two weeks ago, he wouldn't do anything with his feet, even if I tilted him to the point of almost falling over. Now, with just a little tilting, he's bending his knees a bit & lifting his feet and moving them forward. I suppose it's more of a shuffle, but every great accomplishment begins with just one small step... Go Levi!!Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com3tag:blogger.com,1999:blog-7186778518510231264.post-90131665338582910542012-07-02T20:34:00.001-07:002012-07-02T20:34:15.964-07:00Teething Hell is Almost Over... for NowLevi's suffering in the last month because of his teeth has become legendary in our household. I'm fairly certain that everyone I know is tired of hearing me go on about how miserable he is and why won't it stop and I'm going to lose my mind worrying about him not eating and drinking....<br />
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Thankfully I can say with a fair amount of confidence that the worst is behind us! With my finger, I can feel the edges of his upper central incisors (front teeth). That generally means the worst of the pain and inflammation is over. Hooray!! He hasn't needed pain medication in several days, which is fabulous - but I wanted to write an update on this specifically because I believe I found another tool in the war against teething pain and I want to tell others about it. If you have a child who has teeth erupting, you need to know about baltic amber teething necklaces. <br />
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<tr><td class="tr-caption" style="text-align: center;">enjoying the benefits of his necklace, in the pool - <br />
and definitely looking the part of the little surfer dude!</td></tr>
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The amber (petrified tree sap), which happens to be very beautiful by the way, releases a chemical called succinic acid when the amber is worn and warmed by the body. Recent studies show this chemical has anti-inflammatory and pain relieving properties. I gambled $20 and purchased Levi's necklace from Amazon (love their free shipping!!) and less than 48 hours later, I was reverently placing it around Levi's neck. It has several safety features, including hand-tied knots between each stone in case of breakage and a screw-together clasp as opposed to the typical levered clasp. It's "tight" enough that it cannot be put in the mouth, yet it's nowhere near "tight" enough to cause any kind of irritation to the skin. I do check it at least twice per day to make sure nothing has changed.<br />
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Within hours, I noticed a significant improvement in Levi's tolerance. He had been feeling so lousy, I couldn't set him down on the floor without resulting tears. After the necklace, he was more like his usual self, content to play with toys and hang out with us when we couldn't actively play with or hold him. After a full day, his willingness to eat and drink started to return and it's been improving since. It's been so great, he hasn't had any aceteminophen or ibuprofen in several days. I'm seriously wondering if buying him a second bracelet to wear as an anklet would be worthwhile? After all, we've got at least another year or so of teething ahead of us. <br />
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He's not fully back to normal yet. He still is rubbing everything he can on those teeth and always has his fingers in his mouth. But he's sleeping normally and is eating most of the foods he used to eat (again) and we're working on getting enough liquids back into his diet again. He had just started taking a bottle really well but with all the mucus and resulting sinus congestion because of the teething, he wants almost nothing to do with it now. But we're working on that...<br />
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Anyhow - seriously - if teething becomes the bane of your existence (like it has for me) seriously consider getting one of these necklaces for your child or grandchild because there is definitely something working there! <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJoA-RTvSGH8n3e1A9A7oscFFVxDeyDPQZ3raXlXCCXhtQQ1XWRvvZlEylGg2_0RjsSc-kBKlEidYf1CzsTqaLtlvyME7aEP-3_zKxIR0osdpTwk1LGJ89b4NHCD0-MOSAGA5wHLj0husa/s1600/amber+necklace.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJoA-RTvSGH8n3e1A9A7oscFFVxDeyDPQZ3raXlXCCXhtQQ1XWRvvZlEylGg2_0RjsSc-kBKlEidYf1CzsTqaLtlvyME7aEP-3_zKxIR0osdpTwk1LGJ89b4NHCD0-MOSAGA5wHLj0husa/s320/amber+necklace.jpg" vca="true" width="316" /></a></div>Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com0tag:blogger.com,1999:blog-7186778518510231264.post-72707760195840859552012-06-24T21:17:00.001-07:002012-06-24T21:17:50.720-07:00What an Amazing YearHappy Birthday to my handsome, charming, intelligent, creative, snuggly and loving little boy!<br />
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I've watched it approaching though it was stealthy for a while. A slow change has been creeping upon Levi in the last 6 weeks or so. His pursuit of understanding in his play - his posture - his appearance... he is moving further away from true infancy and is getting a whole lot closer to toddlerhood. <br />
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This birthday has dredged up a whole lot of emotions which I thought had been dealt with or solidly buried. I can honestly say I've never cried over my child's birthday before. It brings back memories from last year and all the worry and grief that came along with Levi's surprise diagnosis. I find myself walking a line between wanting to interact with Levi like he has no different-ability and wishing for more time to push extra therapies into his schedule. It's hard... but then, many say that nothing worth doing is ever easy.<br />
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Like (on to a lighter topic) party planning... I spent several weeks prepping for the big celebration, choosing just the right theme and accessories. In the end, I chose a monkey theme with bright colors because I feel it reflected the joy and fun of his personality.<br />
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I have a love of baking and decorating the birthday cakes for my kids, with the exception of the ones for the first birthdays. This year, I felt compelled to do it myself and fell in love with a building block cake design. It took two days and approximately 7 hours of time in the kitchen, but I managed a level of success with which I was happy! The result was this:<br />
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My geometrical shapes weren't perfect - but overall, I was impressed with my first try at this design. The big cake was for guests - the little cakes were for Levi to smash (A) at the party and (B) at his birthday photos tomorrow. It went over well... you can see how much he enjoyed his cake! He dug right in without any hesitation...<br />
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He wore himself out a bit and needed a short rest...<br />
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And once he devoured (smeared) most of it, he yelled for more!<br />
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Once he recovered from the wipe-down, which he despised, by the way - he was content to drift off into a post-sugar-high coma in the arms of a good friend. After he recovered his wits, he returned home to open a few gifts before heading to bed for the end of his first day as a one year old!<br />
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Sure, it looks like he's asleep - but he's actually fascinated by the all the cool puzzles he received (to help him work on his fine motor and cognition skills)<br />
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Notice the cat, providing assistance in the "unpackaging" department? It's her calling in life...<br />
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He also enjoyed reading (and tasting) a multitude of birthday cards... several of which noted donations to our local Down syndrome association in his name. Very thoughtful of our friends and family...<br />
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All in all, it was a wonderful birthday celebration. There were people we'd invited who weren't able to attend and we missed them, but some great friends were able to celebrate with us and that means the world to us! <br />
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Levi is able to do so many wonderful things, I couldn't possibly list them all. To name just a few, he can pull to a stand from a 90-90 sit. He can get into a kneeling position while holding on to a higher surface. (like peeking over the edge of the toybox). He can get Mom's attention by yelling for her to look at him. He recognizes several signs for things like, "eat", "milk" and "all done." But he tops the list with being able to capture the hearts of all who take the time to know him... He is a sweet, sweet, little baby who is growing into a little boy right in front of my eyes. <br />
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This past year has flown by in an instant and my experience tells me that he'll be two before I can fully comprehend it. He'll be walking and communicating (talking or otherwise) and surprising us more and more with all that he can do with our faith, love and perserverance. <br />
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Levi has had a rough couple of weeks because of his teeth that are ready to break through the gums. They've caused him a ton of pain and difficulty eating and drinking. As such, he lost almost 2 pounds in the last 3 weeks but somehow managed to grow almost an inch longer during that time. That probably didn't feel so great either...<br />
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So one year after an expeditious delivery into my arms, Levi has gained 9 1/2 inches in length and almost 12 pounds. And his head has grown by 4 1/2 inches too! That's a lot of work for such a little guy...<br />
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Length: 29 inches (~24th percentile)<br />
Weight: 20 pounds, 6 ounces (~15th percentile)<br />
Head Circumference: 17.75 inches (~18th percentile)<br />
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He's wearing a size 4 shoe and has adorable footprints, just like his siblings. He's filling out a 12 month outfit and was close to moving into size 18 months in some items. With his recent weight loss, that may be delayed a bit, but it's still not far off... His beautiful blue eyes are clearly going to stay blue, just like his siblings. I had hopes that at least one of the kids would have green eyes like their mom, but I get to look at five sets of baby blues (hubby's included) each and every day! His hair is definitely darker than it was when he was born and has just the tiniest hint of a reddish hue in the sunlight. I would describe it as being a combination of light brown which graces Evan's head with a bit of the coppery red afforded to Katelyn and Trevor. <br />
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He is beautiful and snuggly and perfect and I dream of great things for him - love, life and the pursuit of happiness. Just like us all...<br />
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Happy First Birthday, Levi Jacob. <br />
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<a href="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc6/197681_4081441917051_178542994_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" rca="true" src="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-snc6/197681_4081441917051_178542994_n.jpg" width="320" /></a></div>Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-58125654203370637402012-06-15T20:04:00.003-07:002012-06-16T10:40:34.639-07:00So So Close...One week to go until Levi's birthday! Aaaagh - It's so exciting and stressful all at once. But I can't even focus on that yet because he has been horribly ill (on the inside) all week. No sneezing or coughing or runny nose or anything obvious (hence the "on the inside" comment). But he hasn't eaten any food for six days and is barely taking any liquids either. He's been to the doctor who pronounced him laden with viral infection but wasn't overly concerned about it as his lungs and ears were good. Rest, pedialyte and time were the recommended treatments.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6BRLOtXv31H0VuzZM5aqGjvopm3BtdM_aZ1GQJkzomZNWk64zCfDSpjm81WNJLibaFZDoGrGhkapEI8Q1yVyS6-Jyi2p5C4v63c1WYmbAK-lhnMC4D7pK2Onz-ihqqvqoySOAlix17Uef/s1600/2012-06-10_16-36-05_441.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6BRLOtXv31H0VuzZM5aqGjvopm3BtdM_aZ1GQJkzomZNWk64zCfDSpjm81WNJLibaFZDoGrGhkapEI8Q1yVyS6-Jyi2p5C4v63c1WYmbAK-lhnMC4D7pK2Onz-ihqqvqoySOAlix17Uef/s320/2012-06-10_16-36-05_441.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was either this...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvtXVjDVPDF49UUD_2CJCEZ6NhxeFD2THWtE4UCRQVSxX6Mmx1YKdFXBuEnkKHufRMBhSqKBAJ8kWHOlFSUYd63jm6WeKDvl7iZpkfFEImf4guopQdhDZvS9vH6BA5KlLezPBp5lPKg7PQ/s1600/2012-06-15_13-38-20_820.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvtXVjDVPDF49UUD_2CJCEZ6NhxeFD2THWtE4UCRQVSxX6Mmx1YKdFXBuEnkKHufRMBhSqKBAJ8kWHOlFSUYd63jm6WeKDvl7iZpkfFEImf4guopQdhDZvS9vH6BA5KlLezPBp5lPKg7PQ/s320/2012-06-15_13-38-20_820.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">or this, pretty much all week long. </td></tr>
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He's spent most of his days sleeping and is clearly exhausted when he is awake. He only wants to be held up on mom's shoulder and cries if you try to put him down anywhere. Thankfully today seemed like he might not be quite as sick as before. He drank more liquids than he has in days (though still not much) and was interested in playing with a few toys once he was medicated enough to be able to breathe.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgENL8qxiMaRyDVQiLnvodpJkSZPGbtqyzEd0YVb8KgsFjKOy1vJ-aWy8VBMgyES8J6ddekiRH1lYYAdKxU59lfTaG2Cz05ScJSgrMMLgWt8mLMh7B1TT9UKE3FWZvEDc5rzDRAZ3WqUehg/s1600/2012-06-11_12-11-31_709.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgENL8qxiMaRyDVQiLnvodpJkSZPGbtqyzEd0YVb8KgsFjKOy1vJ-aWy8VBMgyES8J6ddekiRH1lYYAdKxU59lfTaG2Cz05ScJSgrMMLgWt8mLMh7B1TT9UKE3FWZvEDc5rzDRAZ3WqUehg/s320/2012-06-11_12-11-31_709.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">recovering from his sick-day photo shoot</td></tr>
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All my fingers and toes are crossed that he seems improved tomorrow because otherwise, there's another visit to the doctor's office in his future! Well actually - there are more appointments in his future regardless because last week, he went to see a pediatric gastroenterologist to rule out complications from his GERD. He's been referred for blood tests, an upper GI xray series, a barium enema and a gastric emptying profile. And his Prilosec has been doubled to 2 doses per day. <br />
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On to happier thoughts...<br />
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This weekend is Levi's first Father's Day! He has participated in putting together a super-cute memento as a present for hubby. I'm certain he's going to love it and I look forward to sharing it here once he receives it!<br />
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<tr><td class="tr-caption" style="text-align: center;">how many years do I have to wait for them to all look up at the same time?</td></tr>
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Birthday party fun is slowly coming together. It looks like we'll have about 35 guests, which means that I've got to get crackin on my cake design and finalize plans for the menu. I have all the table supplies and balloons. I can't wait to put it all together and see the final result!<br />
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I definitely have mixed emotions about my baby growing up. I'm very excited to see what next year brings and in some ways will be happy to see this very tumultuous one end... BUT my <em>baby</em> is getting so big and I'm afraid the days of cuddles and snuggles are soon to be gone. I will hold on to them as long as I can, while still being the pushy mama bird trying to make her fledging grow!<br />
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Saving more details for next week's monthly update, time for pics and stats...<br />
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<span style="font-size: large;">UPDATE: Back to the doctor on Saturday and yup, he's got an ear infection in the left ear. Antibiotics are our friends and so hopefully by the end of Father's Day, he'll be feeling a WHOLE lot better!</span><br />
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Weight: 20 pounds, 10 ounces (down about a pound from previous measurements)<br />
Length: 29 inches (I measured this about a bajillion times - I'm certain this is very accurate though I'm hugely surprised because he hasn't grown at all for several months - I especially wasn't expecting it while he's ill)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSiDhDk6VNESaSU97vkYqRUoxBsYECSe2waINn0q7U375hCaGZ6s9ysuDH6JmxYU4JlN58G2vBmn-mWfpDyLUZL7aSQD14k6QdixASDvJvSLM5ae7F4mamxX_CGdeJCxIcMnj5CWTU2J0L/s1600/2012-06-15_17-22-34_834.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSiDhDk6VNESaSU97vkYqRUoxBsYECSe2waINn0q7U375hCaGZ6s9ysuDH6JmxYU4JlN58G2vBmn-mWfpDyLUZL7aSQD14k6QdixASDvJvSLM5ae7F4mamxX_CGdeJCxIcMnj5CWTU2J0L/s320/2012-06-15_17-22-34_834.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finding some energy to play today</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGk3x46MAIlURHk-1YILWzAoX8iEhdzkH6ErEcbOor3oboHtxwvqzo4BnojASX_ngbaDC4mefPLDlVneZPElD9zvSusqiSzsg3Gkfz5R4KVdkYtAzVDdYx_9R5Qb8YzKYGxBCRh4SLU7GP/s1600/2012-06-15_13-37-21_546.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGk3x46MAIlURHk-1YILWzAoX8iEhdzkH6ErEcbOor3oboHtxwvqzo4BnojASX_ngbaDC4mefPLDlVneZPElD9zvSusqiSzsg3Gkfz5R4KVdkYtAzVDdYx_9R5Qb8YzKYGxBCRh4SLU7GP/s320/2012-06-15_13-37-21_546.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">am I about to cry? maybe - let me think about it for a second! don't rush me...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivn8oU7JLcphyphenhyphenPd4OxK5CZFTMDMpOYXKwMGNreCM_iZt_mK7CpUTczNGD5_waCzZ62o0vqOuN4TiZyZC60Gr5rnZfUqLrhB6hKqmLoNocK6glQ5Zvp7c1jwe6tyhbQlNfO9RYcemlpdgY9/s1600/2012-06-15_17-21-21_767.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivn8oU7JLcphyphenhyphenPd4OxK5CZFTMDMpOYXKwMGNreCM_iZt_mK7CpUTczNGD5_waCzZ62o0vqOuN4TiZyZC60Gr5rnZfUqLrhB6hKqmLoNocK6glQ5Zvp7c1jwe6tyhbQlNfO9RYcemlpdgY9/s320/2012-06-15_17-21-21_767.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">even the favorite spinny toy just isn't as exciting when you'd like to be lying comatose on your face instead</td></tr>
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Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com2tag:blogger.com,1999:blog-7186778518510231264.post-49688365826391141992012-06-13T20:33:00.003-07:002012-06-13T20:33:44.583-07:00A Revelation & Some PhotosI watched a video several days ago which was shared by the <a href="http://www.disabilityscoop.com/" target="_blank">Disability Scoop</a>. It was of a boy with cerebral palsy running a race during his school's field day. He experienced a wonderful show of support by his schoolmates. I cried almost through the whole video...<br />
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I wanted to post it here, though not specifically Ds related because it really triggered a revelation for me. As recently as a few months ago, I worried about the things that Levi might not get to do or experience. Lately I've been worrying less about whether he'll be able to do many things and more about how he'll feel attempting those things. You see, I am a perfectionist. Sometimes those tendencies are helpful in seeing a project through to completion and getting the job done right. Sometimes it's hindering because I often turn away from challenges which I perceive as too difficult to complete perfectly. I don't want to be disappointed in myself for "failing."<br />
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Seeing this last week really made me realize that my perfectionistic tendencies have been influencing the way I've perceived the possibilities for Levi. It equates to "I feel sad because Levi certainly won't want to run a race against his typical peers because there's no way he'll win." This may not be the best example - I'm not saying Ds has affected Levi in some way which will prevent him from running quickly - it's just an example. In any case. This video showed me that Levi doesn't have to feel the same way I do about challenges - in fact, in many ways - I hope he doesn't. I hope he strives to overcome challenges which he perceives as difficult. I would be more proud of him for that than winning first place in a race any day!<br />
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So here's the video - I hope you enjoy it as I did...<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/o6Alt2DssYc?feature=player_embedded' frameborder='0'></iframe></div>
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And because I've been slacking in my blogging (and will probably continue to be over the summer as we'll spend very little time indoors), here's a few adorable pics from the last few weeks. I was hoping my weekly updates on Levi would make it until he turned one, but I'm so swamped with appointments and planning this month that I strongly suspect his birthday post will be the next one to arrive. So until then...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipaWRVC09CeY0mVqlf1F-ghp4CfKaX9oloSVjRoGXYkGzPHl8xxGL8rrHlok0EM5VKBsatmxPYUgacKneVnuLX4QQAnxPLu2mtYCoRQrmeP8_XZ6Xj1HjFIbdveQQMF2pch9_ZYXlGZkQM/s1600/2012-06-10_15-17-22_465.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipaWRVC09CeY0mVqlf1F-ghp4CfKaX9oloSVjRoGXYkGzPHl8xxGL8rrHlok0EM5VKBsatmxPYUgacKneVnuLX4QQAnxPLu2mtYCoRQrmeP8_XZ6Xj1HjFIbdveQQMF2pch9_ZYXlGZkQM/s320/2012-06-10_15-17-22_465.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfkGxxcNrmebii5Pm7xKa-CsHzMS900g6nObSLObvmD2bRB-xCR2CYG3hugPeduk-O0TxVeAAjQJvGvUutSY5JQYUYXhCMYMQgutRp4ns0MKV0yRO_djpNMeCwSEEXSHDPsCRiF5Iie_T5/s1600/2012-05-30_07-34-39_535.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" pca="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfkGxxcNrmebii5Pm7xKa-CsHzMS900g6nObSLObvmD2bRB-xCR2CYG3hugPeduk-O0TxVeAAjQJvGvUutSY5JQYUYXhCMYMQgutRp4ns0MKV0yRO_djpNMeCwSEEXSHDPsCRiF5Iie_T5/s320/2012-05-30_07-34-39_535.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Learning to Hold His Own Bottle</td></tr>
</tbody></table>Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com2tag:blogger.com,1999:blog-7186778518510231264.post-90789105684124668822012-05-28T20:18:00.001-07:002012-05-28T20:18:17.511-07:0011 months old...<div>
Last year at this time, I was 33 weeks pregnant with my last child and my biggest concern was whether my third son would look more like Trevor or Evan. I walked a fine line between being totally ready to meet "Baby Superman" and wanting him to stay inside as long as possible! Little did I know that 4 short weeks later, my baby would rock my world in a completely unexpected way... <br />
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<tr><td class="tr-caption" style="text-align: center;">It's a giant, Levi-containing belly!</td></tr>
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Here we are only one month away from his first birthday and my world is so completely different from what I imagined when he was just a few days old. I was so scared for our future and now I am so hopeful. I am realizing that the overall picture might be a little different that what I had initially envisioned, but I think it will be just as beautiful!<br />
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Levi started waving occasionally almost a month ago. He puts his little arm up in the air, more in a salute... but it was definitely in response to us saying, "Hi" to him...He learned to push the button on the busy box which makes one of the animals pop up. He also became very good at pushing them all back down and enjoys when he gets the opportunity because Evan apparently still feels it's <em>his </em>toy to operate and usually runs to take over when he sees what Levi is up to. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLDej8uJugube_VoPxdCMosf7TqtiM7-DZXQCsIhQbdRaaCYiY-Xn17KuiX7rWmDEzWdKlgv7f2XevJtergjT_MaHkry8_eWQdGJTI8PjEyz6rPVmG4oliNeEZD5RRbdSMsUfJ-w79BVtD/s1600/2012-05-22_07-24-00_625.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" qba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLDej8uJugube_VoPxdCMosf7TqtiM7-DZXQCsIhQbdRaaCYiY-Xn17KuiX7rWmDEzWdKlgv7f2XevJtergjT_MaHkry8_eWQdGJTI8PjEyz6rPVmG4oliNeEZD5RRbdSMsUfJ-w79BVtD/s320/2012-05-22_07-24-00_625.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">watching Baby Signing Times - part of the morning rituals</td></tr>
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He started doing this unusual move where he puts the soles of his feet together and then leans forward on to a knee and has his arms straight. This seems to be as close to the quadruped as he's comfortable with doing on his own. He'll even rock from one knee to the other before sitting back down, which helps him to easily change the angle of the direction he's facing. Of course I'm still trying to get him to practice quadruped, which he still gets very upset about. He gets pretty vocal in his complaints when I'm trying to hold his hips in position. <br />
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In an effort to avoid this, he's picked up yet another skill. He's beginning to pull to a stand. The caveat is that he locks his knees and sticks his bum out at an angle so he's not really using his quadruped muscles to support himself. We bought him his first pair of shoes (high tops with ankle support) to give him a better sense of stability - and sometimes I put a book under the toes of his shoes, which helps to keep him from locking his knees and forces him to use those upper legs muscles. He is slowly building up a tolerance - he used to tire almost immediately, but now he's able to hold that position for as much as 20-30 seconds before he fatigues and needs to sit down. He's so cute though, in the way that he'll turn and look at me over his shoulder in an attempt to "flirt" his way out of having to work so hard. You can literally see him thinking, "Look at me! I'm too cute to make me work this hard! Let me do it my way..."<br />
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<tr><td class="tr-caption" style="text-align: center;">First Shoes - Size 4</td></tr>
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He started wearing 18 months clothes. He still fits into some of his 12 month items, but the onesies, in particular are getting to look more like sausage casings! So up to the next size we go... I suspect he'll be in this size at least until we get close to the end of the year. <br />
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At the beginning of May, he started biting while he was nursing (I suspect that's when his upper front teeth really began to bother him - they are now getting really close to cutting through the gums) Anyhow - within a couple of days, he quit nursing, cold turkey and though it took a couple of days, he did start taking a bottle. Initially, he was only drinking about 8 ounces per day, but we've finally worked up to about 15-16 ounces. I'd like to get him closer to 20 ounces or so but he just doesn't seem to have the room to drink all of that plus eat food. We're working with a nutritionist through EI to eat nutritionally-dense foods which will also help him transition to more table foods from the purees. It certainly has been a very stressful issue for this past month. I worry if he skips a bottle or doesn't want to eat a meal because I worry that he's not getting enough calories to grow or maybe he'll become dehydrated. <br />
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<tr><td class="tr-caption" style="text-align: center;">crackers & strawberries - yum!</td></tr>
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We were fortunate enough to be able to get into see the endocrinologist, who reassured me that all currently seems to be well with Levi's hormones. There is no apparent trend of a problem with his thyroid. His last thyroid test was in normal range and was actually better values than the test done at about 4 months of age. Right now, he's not scheduled to have another thyroid panel until he's 2, but I may want to check it again around 18 months, especially if he continues to grow so very little. I was quite disappointed to find that Levi is a full 1/2 inch shorter than what I had thought via my at-home measurements. I suppose it's one thing if all of his "systems" are working as well as they can, but he still ends up being short - it's completely another thing if I miss something (i.e. symptom of a problem) that causes him to lose potential growth. No plans right now to follow up, but we're welcome to return if we have any concerns. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjseG188Beb67pjij6D33ATMIAlKIt7NJbhRDFFIX8L8G3qmuM0m5U2dEOx_ZPBeMJv3N8S58cqiB8GTHx8K6Q5fpA1IKQXxIfd3qiPlkgH7a84R-2a_CfT1F8wr2_AN8a1KwILmwgabdNB/s1600/2012-05-23_15-26-02_108.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" qba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjseG188Beb67pjij6D33ATMIAlKIt7NJbhRDFFIX8L8G3qmuM0m5U2dEOx_ZPBeMJv3N8S58cqiB8GTHx8K6Q5fpA1IKQXxIfd3qiPlkgH7a84R-2a_CfT1F8wr2_AN8a1KwILmwgabdNB/s320/2012-05-23_15-26-02_108.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">taking his super-cuteness out on the town</td></tr>
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I've heard some new babbling in the last month, though it disappeared again when he started developing some new motor skills. I love hearing him say, "Blah, Blah, Blah!!"<br />
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We quit using the Tucker Sling during the last month and switched to sleeping flat in the crib. He still wakes up around 5:00 in the morning and ends up going to the swing so he stops chatting to himself and goes back to sleep until around 6:30. He does pretty well overall and usually sleeps through the night. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb2gxwMbiggxbNXr8aM0U8VjteNqLfv22yXoSazqxBrCXFaHMSeOkYtbXbyx3G8dxpJfq4FqLpGFdYbeEJ1ewkcf3SK_j0EyLxUNGfFibBhfCkTV8sbKv_i3dk3VZRV8F4WjYUYkowbncY/s1600/2012-05-25_09-03-35_201.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" qba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb2gxwMbiggxbNXr8aM0U8VjteNqLfv22yXoSazqxBrCXFaHMSeOkYtbXbyx3G8dxpJfq4FqLpGFdYbeEJ1ewkcf3SK_j0EyLxUNGfFibBhfCkTV8sbKv_i3dk3VZRV8F4WjYUYkowbncY/s320/2012-05-25_09-03-35_201.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chewing stuff is GREAT!</td></tr>
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He got some practice eating birthday cake when my mom (Nana) came over for Mother's Day. Her birthday is the week before, so we all had some chocolate cake to celebrate and Levi was not completely sold. He seemed to like it, except for the fact that he couldn't get it off his hands in order to suck on his fingers that he always has in his mouth.<br />
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Levi's birthday party is coming together. I want everything to be perfect because he deserves it but it seems like there are so many other distractions trying to keep me from making a lot of progress. I guess I'll just have to do some Mommy magic and make things happen!<br />
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Next monthly update will be after Levi is one! Stay tuned...<br />
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Weight: 21 pounds, 2.6 ounces (~30th percentile)<br />
Height: 27 3/4 inches (~7th percentile)<br />
Head Circumference: 17 1/2 inches (~10th percentile)<br />
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<tr><td class="tr-caption" style="text-align: center;">11 months old!</td></tr>
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</div>Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-90346402013246531392012-05-22T19:50:00.002-07:002012-05-22T19:50:32.762-07:00Keeping Them SafeI came across a blogpost this evening which rekindled the fear in my heart for the safety of my children. It sucks to admit it - but it's true. The statistics are horrifying - over 90% of people with developmental disabilities will be sexually abused in their lifetime. <a href="http://www.mass.gov/dppc/abuse-recognize/prevalence-of-violence.html" target="_blank">click here for sources</a> This subject simply <span style="font-size: large;">cannot</span><span style="font-size: small;"> be ignored. I hope to give my children the power to protect themselves; what will you do?</span><br />
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<a href="http://www.withalittlemoxie.com/2011/10/31-for-21-abuse.html">http://www.withalittlemoxie.com/2011/10/31-for-21-abuse.html</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com1tag:blogger.com,1999:blog-7186778518510231264.post-31437216452583273562012-05-20T06:41:00.003-07:002012-05-20T06:41:51.348-07:00Beautiful WordsHaving children with disabilities has a side effect which I've come to love. It has given me new perspective on what's <em>really</em> 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. <br />
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<a href="http://i487.photobucket.com/albums/rr239/mom2ktntj/quote.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" kba="true" src="http://i487.photobucket.com/albums/rr239/mom2ktntj/quote.jpg" width="240" /></a></div>Anonymoushttp://www.blogger.com/profile/06825642669445394992noreply@blogger.com2