tag:blogger.com,1999:blog-19867338088692970162024-02-12T18:31:54.232-06:00Our Little ManStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.comBlogger115125tag:blogger.com,1999:blog-1986733808869297016.post-76381383019672449272014-01-29T08:18:00.001-06:002014-01-29T08:18:20.672-06:00Project Valentine!<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">Ok friends and family. I have invited you all to help me put on a dinner at the Ronald McDonald house in Chicago On valentines Day. I invited you all knowing that you would not be able to physically be there, but praying you could help us out. </p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;"><br></p><p style="margin: 0px; font-size: 12px; font-family: Helvetica;">Ronald McDonald House is a home away from home for many who have children with chronic medical needs, or who have been in accidents and are away from home. For $10 a night ( if you can pay), you get a private room with 1-2 beds, a fold out couch, clean linens, a private bathroom, free wifi, and at least one VERY good hot meal per day!!! They also have snacks and activites for the kids. Sometimes they have passes to things like the museum or an event to allow a family to be "normal" even if for only a little while. They have tutors, computers, and TV rooms. We don't know what we would do without RMH. </p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">There are two ways you can help:</p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">1) Monetarily. Even $5 will help tremendously. Anything not spent on dinner, will go back to the RMH as a donation for much needed supplies. There are two ways to do this. You can send a donation via Paypal or snail mail. Our Paypal address is lilmansdad@aol.com. To mail or drop off something, Stephanie Wyatt, 2501 Eastroad, Danville, IL 61832</p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica; min-height: 15px;"><br></p>
<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">2) This is Valentines day. Many of these kids are far away from home, sick, and somewhat isolated from their family and friends. They miss out on things like class parties and giving valentines to friends. I am asking if some of you would be willing to send valentines to these kids and/or supplies to make valentines for others! Stickers, paper, glue sticks, crayons, etc. I would LOVE to see enough Valentines for both the kids at RMH AND the kids in the hospital at Comer Children's Hospital and LaRabida. It's a tall order, but I have faith in my friends and family here. </p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">Again, Paypal address is lilmansdad@aol.com</p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">Snail mail address is Stephanie Wyatt, 2501 Eastroad, Danville, IL, 61832</p>
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<p style="margin: 0px; font-size: 12px; font-family: Helvetica;">Please share with your church groups, scout groups, daycare, family and friends. RMH is SO important to families while their children are going through medical care. We don't know what we would do without them! REMEMBER, We only have a little less than two weeks to pull this off!!!! We will be leaving for Chicago on the 12th of Feb, so all valentines will need to be here by then. Thank you!!!!</p>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com0tag:blogger.com,1999:blog-1986733808869297016.post-53949747034189261542014-01-06T22:51:00.000-06:002014-01-06T22:51:44.065-06:00We're baaaaack!I keep apologizing for being a horrible blogger. Last year obviously I just wasn't in to it.
I made a New Years resolution to try to blog at least once a week. Even if it's just a few lines.
This year, Christopher turned TEN!!!!!! I cannot believe it! He's not a baby anymore and I feel like I missed it all.
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So, I'm going to try to take more oictures and record <strike></strike>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com0tag:blogger.com,1999:blog-1986733808869297016.post-68299128043134959522012-10-05T06:44:00.001-05:002012-10-05T06:58:23.927-05:00Down Syndrome Awareness MonthOctober is National Down syndrome Awareness Month! If you click in any of my friends blogs, there will be tons of folks doing 31 for 21, or a post a day for Down syndrome. Honestly, we are doing well to have two posts in one week here. LOL!
I am going to leave you with some videos. Get out the tissues!
<iframe width="420" height="315" src="http://www.youtube.com/embed/ZAiXaqUXPy4" frameborder="0" allowfullscreen></iframe>
And this...This is a traveling gallery that is going to be turned into a coffee table book. We know a few of these beautiful faces!
<iframe width="420" height="315" src="http://www.youtube.com/embed/t_0K-gPlyb0" frameborder="0" allowfullscreen></iframe>
This one too!
<iframe width="420" height="315" src="http://www.youtube.com/embed/NfuaNhXI1Ao" frameborder="0" allowfullscreen></iframe>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com2tag:blogger.com,1999:blog-1986733808869297016.post-77763469442236901132012-10-02T05:05:00.001-05:002012-10-02T13:24:08.089-05:00We're still here!I'm just such a bad blogger since FB has come around. I NEED to get better at this.<br />
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Lots of stuff going on, so here is the run down:<br />
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We have moved. We all like the new house, although I am STILL unpacking. Getting rid of tons of stuff. It's amazing how much we accumulate, but even more amazing how much Christooher has accumulated! Holy cow! There is no mistaking, this is HIS house.<br />
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We are still going to Chicago for more of our docs., and therapy once a month. I finally got smart with the doctors appointments, and scheduled a week long block of them. The only thing is, there were too many for one week. We went in September and will go again in October.<br />
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Christopher is progressing quickly. Not sure what has changed, but he has gained 12 lbs since December. That may not seem like much, but for a kid who hovered between 21 and 24 lbs for 6 1/2 years, that's a HUGE deal. He's a whopping 33 1/2 lbs now!<br />
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He's babbling a lot, with some words mixed in. Some he still says regularly, others are new or he repeats once and never says again. He's also moving a LOT more. Eight years in and we are finally having to baby proof. :) He's working on crawling up the stairs, although he's not too thrilled about coming back down again. He would play on the stairs all day long if we let him. He's sitting by himself all the time. He hasnt been in his little chair for months. He's trying to pull up on the entertainment system and the couch. Problem is, he is sooooo long. He got himself stuck in his bed the other day. It is a modified hospital bed, and he fell through the gap created between the end of the mattress and the footboard when the foot of the bed is raised. I heard a thump, and went in to find him hanging by his neck in the opening. It was pretty scary. We called the company who made the bed and they sent us a new one for free! (I will do a post on that later.)<br />
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Otherwise, we are still fighting the state over the waiver. It is even more scary with the election. If you educate yourself about nothing else with this election, educate yourself with the facts about how the vote will impace healthcare. Be afraid.....very afraid!<br />
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I think that is about it for now. Hope all of our bloggy friends are doing well. I read everybody's blogs, just hit or miss whether Blogger will let me comment or not. :(<br />
<br />Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com2tag:blogger.com,1999:blog-1986733808869297016.post-65825073522255606342012-06-04T11:32:00.000-05:002012-06-04T11:32:34.076-05:00Still Fighting....Sorry for the lack of posts, again. Blogger locked me out!<br />
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Well, the fight still continues for the children on the Medically Fragile and Technology Dependent children's Waiver (MFTD) in IL. Last week, the State legislature passed SB 2840. The Governor is set to sign it in to law sometime this week.<br />
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This bill effectively kicked many of the children on the MFTD waiver off, but instituting income caps to qualify. The entire point of the waiver is to WAIVE income requirements for services. Those who are left to qualify are going to have to pay between 5 and 20% of our income - anywhere from $400 to $1200 per month on TOP of insurance premiums, out of pocket costs, and regular bills.<br />
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The result of all of this is that many families are going to have to chose between going bankrupt, divorcing, quiting jobs, taking major pay cuts, or putting their children in hospitals. All of this is blatantly illegal under the Olmstead ruling. In a nutshell, The Supreme Court ruled that if services were available in a community setting, and the person WANTS to be in the community, it is illegal to force institutionalization on them. A good friend has written a great article explaining Olmstead for Complex Child Magazine <a href="http://articles.complexchild.com//june2012/00389.html">here.</a><br />
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Our next step now is to convince a Senator to introduce a rider bill. This is essentially a separate bill that will say that any changes to the MFTD Waiver in SB 2840 is null and void. So far, we have had no luck.<br />
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Failing that, our last gasp are lawsuits. It is pretty cut and dried that we would win our lawsuits just on the Olmstead violations alone, however, the State of Illinois is currently being investigated by the Justice Department for disregarding rulings in several other Olmsteasd cases. They are currently in contempt of court and have no intention of following court orders. <br />
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We need help getting the word out to media about the back room deals and sacrificing of these children and their families, for others' personal agendas and biases. If you have any National Media contacts, please send them our way. <br />
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To educate yourselves more, please visit www.saveMFTDWaiver.com<br />
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One note here, there are MANY States poised to make the same cuts. California is well on the way. If nothing happens to the State of Illinois, be prepared for YOUR state to act as well.Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-48153912477676928662012-02-15T00:29:00.000-06:002012-02-15T00:29:30.128-06:00WE NEED YOUR HELP!<div id="change_BottomBar"><span id="change_Powered"><a href="http://www.change.org/" target="_blank">Change.org</a></span><a>|</a><span id="change_Start">Start an <a href="http://www.change.org/petition" target="_blank">Online Petition</a> »</span></div><script type="text/javascript" src="http://e.change.org:80/flash_petitions_widget.js?width=300&petition_id=262021&color=1A3563"></script><br />
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Hello all! I will be doing a bigger update on Christopher soon. Right now, we NEED your help! <br />
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While Christopher has been doing well and steadily improving, he still has many medical needs that we have to attend to. Because his medical issues are so complex, he qualifies for something called the Medically Fragile and Technology Dependent Children's Waiver. This waiver eliminates the income requirements for a medical card for HIM (not the entire family), to cover the things that insurance does not. While we have primary insurance, we also have HUGE copays, deducatbles, and most of the most expensive items Christopher needs for day to day living are not covered by insurance at all. When you are talking $4000 worth of formula a month, those bills add up quickly.<br />
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This waiver also helps to provide nursing hours and our super nurse, Darcey. Without ursing, I literally would not get any sleep. Christopher alarms, or wakes up, or gets tangled, or, or, or about every twenty minutes while he is asleep. Between seizures, suctioning, silent reflux and aspiration, oxygen needs, apnea, and more, the night shift is almost more active than the day shift! <br />
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The State of Illinois is broke. I am not even going into that. It is a whole different post. One of their super ideas to cut costs is to eliminate this waiver for children like Christopher! There are only between 400 and 600 children on this waiver at any given time. Many are much more complex than Christopher. One thing we all have in common is that if we lose this waiver, we will all have to decide between hospitalizing our children permently, admitting to a nursing home, or keeping them at home and ealing with the financial fallout of catastrophic medical bills and eventually have to go with one of the other two options in the end. Ironically, once our children are hospitalized, they automatically qualify for a Medical card! The important fact to remember is that just a room in most Children's hospitals that can handle our kids runs about $55,000 per MONTH. JUST THE ROOM! The State spends an average of $188,000 per YEAR on our children currently.<br />
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We also have the added benefit of keeping our children at home with their families, where they belong, out of the hospital for minor illnesses that we can handle at home with nursing help, and SAVING MONEY to boot! It makes no sense why they want to cut our kids other than they see this as a population who will no fight back. <br />
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<strong>This is where we need your help. Please click on the link at the top of this post and sign the petition. It takes all of 30 seconds. </strong><br />
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<strong>We also ask that you blog, tweet, and share with all of your friends, groups, churches on facebook, etc. The State responds to volume not common sense. The more people we have letting them know that they are watching, the less likely they are to endanger the lives of at least 500 Illinois children with complex medical needs. </strong><br />
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Two more points that need to be made here: Last month, the Special Needs Community came together on behalf of ONE child who was given a death sentance by a transplant program. There were over TWENTY THOUSAND signatures gathered on behalf of that child, and the decision was reversed. Right now, the lives of over 500 children hang in the balance. We have less than 400 signatures currently. Please tell me the Special Needs Community is NOT that fickle., that ALL of our children matter and are loved. Otherwise, we are no better that those denying services. If ou aren't part of the solution, you are most definately part of the problem.<br />
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The last point is that you do NOT have to be from Illinois or even the United States to sign this petition. Again, the State responds to volume and for every signature a letter is generated and sent to the Director of Health Services in the State of Illinois, one of the champions of this idea. More than that, there are several other states who are eyeing the outcome of this manuver. Several have already sited the potential loss of the waiver. If you think this won't affect you, think again. Hello slippery slope! <br />
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Thank you in advance for your help. We thank you and the families of the other 500 children this affects thank you as well!Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com3tag:blogger.com,1999:blog-1986733808869297016.post-54987436145593653002011-12-19T01:37:00.002-06:002011-12-19T02:25:45.003-06:00Happy Birthday Little Man!!!!!!<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">SUCH a long time between posts! Soooooo much going on, but it will have to wait for another day. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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I can't believe another year has passed already. It seems like you were just a peanut yesterday. <br />
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This past year has been an exciting one for you. You have made sooooo much progress with your PT and developmental areas! You are sitting up on your own, nice and straight. You are crawling and talking more. You are getting used to your iPad and are starting to realize that "school" can be fun. You went swimming for the first time, and rode a trike for the first time too! You LOVED it! <br />
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Most notable is that you have suddenly started gaining weight and growing!!! In the last 3 months, you have gained FOUR POUNDS and now top out at 28 pounds, 11 ounces. The most you have ever weighed with REAL weight. You have also grown 2 1/2 inches and are now 42 1/2 inches. <br />
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You are now starting to do typical "toddler" things.....crawling, exploring, getting into things. You are communicating more and letting your oppinion be known. <br />
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We can't wait to see what the next year brings for you. You seem to be loving the new house. We will have your stander soon, and hope to get a trike for you this summer. We will continue working with the iPad for both school and communication.<br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Happy Birthday Sweet Boy!!!!! Mommy and Daddy are so proud of you. Have a great year!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtK1V-pNHl6Eo6jOsLXd5MVpPc8FH4VIOIhiryfE4jjdurV4bnD8vgxCmCMpjxx76moy1KFnxrKQiGg6NQ7ilrzT3-Zxo1ErZrdNAMa3Sy_Kb5CmGSqQ1OPDKzeEu8SsOuNf5BGGRoMDU/s1600/iPad+12-19-11+199.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" oda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtK1V-pNHl6Eo6jOsLXd5MVpPc8FH4VIOIhiryfE4jjdurV4bnD8vgxCmCMpjxx76moy1KFnxrKQiGg6NQ7ilrzT3-Zxo1ErZrdNAMa3Sy_Kb5CmGSqQ1OPDKzeEu8SsOuNf5BGGRoMDU/s320/iPad+12-19-11+199.jpg" width="240" /></a></div><br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com2tag:blogger.com,1999:blog-1986733808869297016.post-79272849475851046552011-09-10T03:53:00.001-05:002011-09-10T03:58:23.383-05:00So long old Friend! <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/AVvXsEh82LRkh9eMf4yigTb-3GW8rk62YzOX0BpOff3lVvNnhQ1vwhbLU0vpp1hirb3bbhAgEmkvp_R_L1a8dBKgQZlu3XHR1mCqy0DRqJdRFIkYzBjg3pNgPqFRDYc11AQAzhY-6wMRc8YKozQ/s1600/201109080842.jpg" imageanchor="1" style="cssfloat: right; margin-left: auto; margin-right: auto;"><img border="0" height="400" nba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh82LRkh9eMf4yigTb-3GW8rk62YzOX0BpOff3lVvNnhQ1vwhbLU0vpp1hirb3bbhAgEmkvp_R_L1a8dBKgQZlu3XHR1mCqy0DRqJdRFIkYzBjg3pNgPqFRDYc11AQAzhY-6wMRc8YKozQ/s400/201109080842.jpg" width="397" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><strong>Michael Hart March 8, 1947 - September 6, 2011</strong></td></tr>
</tbody></table><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong> </strong></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He passed away Wed, and I will miss him dearly. He was a bit..um...cantankerous, but we always got along well. He was not one to suffer a fool, LOVED a debate, and respected a person's intelligence over race, creed, income, or education level. He has single-handedly done more for literacy in the past 15 years than anybody I know of. He is the inventor of the e-book, and founder of Project Gutenberg - the LARGEST collection of books online.</div><span class="commentBody" data-jsid="text"></span><br />
<div class="text_exposed_root text_exposed" id="id_4e6b22de77ea85696473658"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He was an awesome mix of geek and librarian. Most of my computer knowledge came from him. As did the willingness to give any book a chance. I promised him that I would start volunteering again after we moved to our new house. I'm sad that h<span class="text_exposed_show">e won't be there to give me my assignments. I am proud to have been a part of Project Gutenberg, and proud to have been able to call Mike a friend. On behalf of book lovers, teachers, and homeschoolers around the world - Thank you and Well done Mike! R.I.P.~</span></div></div><div class="text_exposed_root text_exposed"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div></div><div class="text_exposed_root text_exposed"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span class="text_exposed_show"><a href="http://www.gutenberg.org/wiki/Michael_S._Hart">Obituary for Michael....</a></span></div></div><div class="text_exposed_root text_exposed"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div></div><div class="text_exposed_root text_exposed"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><span class="text_exposed_show">Please go visit <a href="http://www.gutenberg.org/">http://www.gutenberg.org/</a></span></div></div><div class="text_exposed_root text_exposed"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-56969684914757776582011-07-20T01:34:00.001-05:002011-07-20T01:36:01.978-05:00Amazing and Grateful......Hello all! So much to report today. <br />
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If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police. <br />
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Par for the course, when things get tough, Special Needs parents and friends get tougher! If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter <a href="http://missionipossible.blogspot.com/">Mission: iPossible</a>! <br />
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We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!! It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the <a href="http://missionipossible.blogspot.com/">Mission: iPossible</a> Team, thank you just doesn't seem enough. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzhC9r2sUDPtlSXqTXoCL9XOLqaOfAOcvaaCTF0OHwc-AM0viH7TqCMQVq5vUlcjUTTg9qAzfukqPDlgwVPS011AMRxzNuh5KpDMNFh1uSNVpHuHuWxkTwjmJ4QM70hSWlPjREyU_xPSk/s1600/Christopher%2527s+New+iPad_7-11-11+002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzhC9r2sUDPtlSXqTXoCL9XOLqaOfAOcvaaCTF0OHwc-AM0viH7TqCMQVq5vUlcjUTTg9qAzfukqPDlgwVPS011AMRxzNuh5KpDMNFh1uSNVpHuHuWxkTwjmJ4QM70hSWlPjREyU_xPSk/s320/Christopher%2527s+New+iPad_7-11-11+002.jpg" t$="true" width="320" /></a></div><br />
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I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee. That means the world to us. It also means that we will be helping to do what we can to make sure the others get this chance as well!!!! :)<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcLaICYKG0diI1oE6wX4yMBYUlLMIShdJ0mLONi5TB31lMuU5CdraL_cFobEb-Vgh5QUYYEJYy10ZeQqhwMZN9-a8JBa5h6OLWAfLDdKN5DJpTKjoSKCgX3sAxCFFR9jrDlazwIWQaKrU/s1600/Christopher%2527s+New+iPad_7-11-11+009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcLaICYKG0diI1oE6wX4yMBYUlLMIShdJ0mLONi5TB31lMuU5CdraL_cFobEb-Vgh5QUYYEJYy10ZeQqhwMZN9-a8JBa5h6OLWAfLDdKN5DJpTKjoSKCgX3sAxCFFR9jrDlazwIWQaKrU/s320/Christopher%2527s+New+iPad_7-11-11+009.jpg" t$="true" width="320" /></a></div><br />
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I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer. <br />
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As we stated in an e-mail to <a href="http://missionipossible.blogspot.com/">Mission: iPossible</a> Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60% - according to those in the "know". We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him! The iPad helps us break through that barrier. <br />
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We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilGLCokwUk_BYlU4FZncdJh4atvhcB4cqER6r48uDcXzobDp7naiszvjnIaJ8dQii4OIIXX3HFtTb9P7maPmbU63XziOqUiRCl4HG8PtVq7rIifSE5dOSK94kvX3oQvaOCCEZVuBVYJ74/s1600/Christopher%2527s+New+iPad_7-11-11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilGLCokwUk_BYlU4FZncdJh4atvhcB4cqER6r48uDcXzobDp7naiszvjnIaJ8dQii4OIIXX3HFtTb9P7maPmbU63XziOqUiRCl4HG8PtVq7rIifSE5dOSK94kvX3oQvaOCCEZVuBVYJ74/s320/Christopher%2527s+New+iPad_7-11-11.jpg" t$="true" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"></div><br />
So once again - THANK YOU, THANK YOU, THANK YOU!!! If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog. You won't be sorry that you get involved in this one. :) <br />
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Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!! Thanks!<br />
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Hugs!<br />
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Steph and Christopher<br />
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BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com7tag:blogger.com,1999:blog-1986733808869297016.post-29841165732458487932011-07-11T21:40:00.004-05:002011-07-12T14:19:41.307-05:00That's All Folks!If you look a few posts back, you will see that we were excited to announce that Christopher had won an iPad2 and $500 worth of apps. If have been anywhere in the Special Needs community lately, you know that the worst kept secret around is that this entire thing was a mess.<br />
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Mike, the author over at Marissa's Bunny, was the mastermind behind the whole thing. Frankly, I'm too tired to speculate WHY he did it, or the ins and outs of the whole thing. I am leaving the link to Marissa's Bunny over on the side of the page. You can go and read if you are interested. <br />
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What we DO know is that this person had no business collecting money on any body's behalf - let alone a charity that ended up not existing. We also know that at least 40 Special Needs families have been affected by this. <br />
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Forty families, like us, have planned therapy services, education plans, and even the chance to hear what their child is thinking on getting these devices. For us, we planned on using the iPad instead of purchasing a communication device that costs between $6000 and $10,000, depending on accessories and software. We have a limited amount that we can spend on Durable Medical Equipment per year. Those things include standers, AFO's, Gait Trainers, Communication Devices, Bath Chairs, Etc. <br />
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Because Christopher is doing so well in his rehab after his surgery, we have a LOT of equipment that is needed. Equipment that we never thought he would use. Now we are faced with deciding what we are going to do this year - get him standing and potentially walking? Potty training? New Special Needs Car seat? or allow him to communicate on his own for the first time in 7 years? <br />
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What ever happens, Christopher will get what he needs in the end - legally! We'll figure it out and move on. <br />
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As for him, there is an investigation on-going. We will let the authorities do what they are going to do. I have to assume that his life is going to be not very pleasant in the near future. He will be looking over his shoulder for awhile yet. <br />
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If you want to read more about it, you can go on over to <a href="http://www.lovethatmax.com/2011/07/mystery-of-missing-ipadsand-unrest-in.html">Love That Max</a>. Be sure to read the comments section, as it includes comments from Mike himself and a copy of the last e-mail he just sent trying to distance himself from the situation and confirming that there are no iPads. <br />
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If anybody out there reading this and was one of the original winners of the iPad, please head over to our friend Heather's blog, <a href="http://littlewonders-heather.blogspot.com/">Little Wonders</a>. She and a few others are going to try to get these kids what they were promised (the iPads), but they need verification of the winners. Even THAT has come under question.<br />
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This has been going on for many weeks. I have gone back and forth from being mad to hopeful, to suspicious, now just plain disgusted. There are lessons here for all, and opportunity for many others. It is still a sad day in the Special Needs community to think that one of our own (if he IS the parent of Marissa), has targeted our own community for a scam and used his kids to do it. <br />
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StephanieStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com4tag:blogger.com,1999:blog-1986733808869297016.post-36310238276525347552011-05-24T22:39:00.002-05:002011-05-26T06:01:45.360-05:00Can I have your attention????As the Mom of a child with Special Needs, I wear lots of hats. Nurse, Mommy, therapist, teacher, insurance agent, travel agent, and the biggest job I have is ADVOCATE. I don't just advocate for MY son, I advocate for all people with special needs. <br />
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One of the absolute BEST campaigns is <a href="http://www.r-word.org">Tim Shriver's Special Olympics "Spread the Word to End the Word" Campaign</a>. The word we are talking about? Retard or retarded. <br />
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You have all heard people use it, or you might have yourself. "Oh that is so retarded" "You are SUCH a retard!" Yeah - we get that you think you are joking. The thing is - it's not funny. You are using those words as a slam - as a putdown. Your aim is to bring down somebody to the level that you THINK my son lives at. The only one you are bringing down is yourself. DOn't quote the dictionary to me. Don't site your right to free speech. To paraphrase Tim Shriver, you have the right to make a fool of yourself. We also have the right to tell you HOW those words affect us.<br />
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Don't believe me? Maybe this will help:<br />
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<iframe allowfullscreen="" frameborder="0" height="349" src="http://www.youtube.com/embed/T549VoLca_Q" width="560"></iframe><br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com3tag:blogger.com,1999:blog-1986733808869297016.post-20761275087503814372011-05-21T04:44:00.000-05:002011-05-21T04:44:01.069-05:00Before the World Ends.....Hello all!!! The fact that I am posting might be confirmation that the world really IS going to end today! LOL! (Just kidding) I actually had 2 posts ready last week when Blogger broke. They never came back. :( So, I am going to give the short version here.<br />
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We have been SUPER busy. We are going to Chicago at least once a week, sometimes more. Christopher is getting PT every week, and we are trying to cram in as many doctor appointments as possible while we are up there. Christopher is doing GREAT in PT. He is getting in the pool a couple of times a month. He really likes the pool.<br />
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<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/AVvXsEihr5ATa0RvBfD1SNNmIolCLTMgu_-w8LuiciCHpuRqLG9m68FVhf7-TA1BRhpgQMWFLUkk566YKn6wDHxI8GPUjAVS9YbuWn59_HPmFi5vanDnJ11eBIlotomPRcaduyaTfZLX6USuX8Q/s1600/PT+Pool+April+15%252C+2011+007.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihr5ATa0RvBfD1SNNmIolCLTMgu_-w8LuiciCHpuRqLG9m68FVhf7-TA1BRhpgQMWFLUkk566YKn6wDHxI8GPUjAVS9YbuWn59_HPmFi5vanDnJ11eBIlotomPRcaduyaTfZLX6USuX8Q/s320/PT+Pool+April+15%252C+2011+007.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">PT Pool at La Rabida</td></tr>
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Medical stuff is going to have to be a whole other post - we don't have all day here. LOL! Most of you know that Christopher is on what is called a "Medically Fragile and Technology Based Children's Waiver". This waiver does away with income requirements for a medical card and helps to provide in-home nursing + respite, and a few other things. Our renewal was due in March - we missed it by one point - because Christopher wasn't hospitalized enough! The long and short of it is, the criteria they use to decide if you are qualified are definitely biased towards kids with trachs. NOT that children with trachs do not need the waiver - just that there are some children who are medically fragile and don't have trachs that also need the waiver. Needless to say, we are appealing that decision. That involves a TON of doctor appointments, lawyer visits, etc. I'll keep you updated.<br />
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Big Chris and my Dad (Papa) started taking TaeKwonDo classes in March! At 69, I think Papa is the oldest person at this studio. They seem to be enjoying it and are getting in shape - I think. I guess stooped over and gimping is a shape. LOL! They have already been tested and have received a promotion to the next belt - orange! My nephew also attends and is a 2nd Degree Black Belt at age 10. He teaches classes and belongs to a demo group. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHWAgxVYITzBGJvTw-HJVt7SeZD2_nEH8DmM6xp4HXDRqdu5spY8Lxmqk347S9HAHkIHEUCd_dOcgJtgxJ1_pYqanfpI01khFgzZkH5t9yIi-ImFROrJd_kiBJIIhOXspcBW51UUF1HFM/s1600/230971_10150235460276584_645231583_8715262_7109074_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHWAgxVYITzBGJvTw-HJVt7SeZD2_nEH8DmM6xp4HXDRqdu5spY8Lxmqk347S9HAHkIHEUCd_dOcgJtgxJ1_pYqanfpI01khFgzZkH5t9yIi-ImFROrJd_kiBJIIhOXspcBW51UUF1HFM/s320/230971_10150235460276584_645231583_8715262_7109074_n.jpg" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Big Chris also has more news! He has decided to get Baptized in our church!!!!! This is a big step, and we are really proud of him. He decided this on his own. Things worked out so that he will also be confirmed the same day. We are also lucky that our new Bishop of our diocese will be visiting that day as well. So our regular priest will be Baptising him and our Bishop will be Confirming him! Christopher will also be getting re-dedicated. He was Baptized when he was a baby. We had to do it quickly as we thought we were going to have to Life Flight him to Peoria to go straight into open heart surgery. He can't be Baptized again, but he will receive his candle as he should have if he was Baptized in the Church originally. That will be happening tomorrow - May 22, 2011.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Our house is still for sale. We have had a few people look and a couple came back for the third time on Thursday to decide between this one and another one. We haven't heard anything yet, but keep your fingers crossed. Our new house has been painted. About two weeks after we got the basement family room set up in the new house, it flooded from all of the rain we were getting. It hadn't done it in over 3 years, so we thought we were safe. :( We had to clean up an re-group. We are going to be working hard on getting the rest of the house cleaned and things put away as much as possible in the next few weeks. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div>I am also going to be re-organizing the blog a bit. Don't get upset if a link isn't on the side - just check the pages above. I am going to move most of them up there. Our blog roll is just getting too long to keep on the side of our blog! :)<br />
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I will be doing a separate post on this, but Christopher was lucky enough to win an iPad2 and $500 worth of software from <a href="http://www.marissasbunny.com/">Marissa's Bunny</a>! Stop on over for your chance to win one too! <br />
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Hugs!<br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com2tag:blogger.com,1999:blog-1986733808869297016.post-48210103004508641932011-03-31T04:52:00.000-05:002011-03-31T04:52:45.121-05:00Busy, busy.....March has been a busy month for us!<br />
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We are getting things put together at the new house. No, we haven't moved yet. We have moved pretty much all but the are essentials to the other house! We have been weeding stuff out,but we STILL have too much IMHO. We were finally able to afford the painter to paint all of the basement level. Now we can start working on getting things put away. Christopher's home school room looks like a tornado hit it. :) Still trying to figure out the best way to organize it. That will probably change any number of times before we figure it out. We want to try to have as much done as we can, and as many things put in their place before we move in for real. We had two weeks to pack an entire house the last time, and be out on Christmas Eve! We are still unpacking boxes from THAT move. We won't ever do that again.<br />
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We showed the house 3 times in one weekend at the end of Feb/beginning of March. We have had nothing since. I believe we are going to try for a different agent and see what happens.<br />
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Christopher was doing really well in therapy for awhile. Suddenly, he started getting puny on us. And by puny, I mean our poor PT was trying to hold up a wet noodle! He had lost more weight too. So, we talked to our ped and ended up checking him into the hospital a couple of weeks ago for Failure to Thrive. I won't go into all the details here, but it was not a very impressive stay this time around. However, the GI decided to REDUCE the number of calories in his diet. He was on 4800 calories per day when we checked him in, and losing wight. So far, it seems to be working! I don't know if he has gained any weight yet, but he is MUCH perkier and happy.<br />
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I went into his room today to get him out of bed, and found him at the other end of his bed, turned around, and he had thrown ALL of his stuffed animals out or to the head of the bed. He clapped & said "Did dat!" Ha!Ha! <br />
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That is about it on the updates for now. I will try to get more pictures on here. He is having a serious camera phobia right now. He turns away as soon as he sees anything that resembles a camera pointed in his direction! <br />
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Hugs!~<br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-19751222748646375712011-02-27T09:54:00.000-06:002011-02-27T09:54:04.348-06:00Win a free iPad!Go NOW over to <a href="http://www.marissasbunny.com/Marissas_Bunny/Marissas_Bunny_-_Infantile_Spasms_and_Epilepsy_Awareness/Entries/2011/2/23_Merit_Based_Giveaway_-_5_iPads.html">Marissa's Bunny blog</a> and enter for your chance to win a free iPad!<br />
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If you have never been, <a href="http://www.marissasbunny.com/Marissas_Bunny/Marissas_Bunny_-_Infantile_Spasms_and_Epilepsy_Awareness/Entries/2011/2/23_Merit_Based_Giveaway_-_5_iPads.html">Marissa's Bunny</a> is a blog by a Dad and is dedicated to his daughter who has infatile spasms. <br />
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Marissa's Dad is strarting a foundation, also called Marissa's Bunny Foundation. This is a merrit based give away, and ANY special needs child can benfit. Dad's bosses have genrously donated 5 iPads to give away (awesome!). <br />
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So run on over and leave a comment and/or send an e-mail. Good luck!!!<br />
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Hugs!~<br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com2tag:blogger.com,1999:blog-1986733808869297016.post-65504660649359059402011-02-22T01:19:00.001-06:002011-02-22T01:24:23.872-06:00Like Pancakes???????Like pancakes? Want an easy way to help raise money for Children's Miracle Network Hospitals? Looking for something new to add to your feeding therapy sessions? Here is your chance!!! <br />
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Stop by any IHOP on March 1 for a FREE short stack! Load up the kids and hit the IHOP!!!!! Enjoy!~<br />
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You can also sign up to receive a wake-up/reminder call on March 1 from your favorite celebrity! Yea!<br />
<a href="http://www.ihoppancakeday.com/">http://www.ihoppancakeday.com/</a><br />
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(From the IHOP website) <br />
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About National Pancake Day<br />
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March 1, 2011<br />
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Since beginning its National Pancake Day celebration in 2006, IHOP has raised more than $5.35 million to support charities in the communities in which it operates. While IHOP's National Pancake Day typically takes place on Shrove Tuesday, this year, the company will host its free pancake event one week earlier on Tuesday, March 1 to build buzz and excitement prior to Shrove Tuesday. With your help, we hope to raise $2.3 million for Children's Miracle Network Hospitals and other local charities!<br />
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Known also as Fat Tuesday or Mardi Gras, National Pancake Day dates back several centuries to when the English prepped for fasting during Lent. Strict rules prohibited the eating of all dairy products during Lent, so pancakes were made to use up the supply of eggs, milk, butter and other dairy products...hence the name Pancake Tuesday or Shrove Tuesday<br />
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~StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-66264883018538956752011-02-03T09:32:00.000-06:002011-02-03T09:32:17.809-06:00Sweet LoisI am so sad to have to share this news. Dear, sweet Lois passed away this morning in the arms of her parents. She fought so hard to overcome leukemia. In the end, her little body just couldn't do it. <br />
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February 1-6 is Leukemia Awareness Week. If you do nothing else, please show your support by painting your FB profile orange, donating to the Leukemia/Lymphoma society, or sign up to be tested to see if you are a match for a bone marrow transplant. <br />
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In the mean time, please stop by <a href="http://www.thedailylois.blogspot.com/">Lois's blog</a> and leave a message for her family. R.I.P Lois!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ3eUzv1Es-J4D8ss0feDSzr0-NkW7BRFVlr3yQSObMgaGBcRUxEt8ZBeWkLcfYeq3SJ0zNz5klU5BXFzs8KxUN2hyphenhyphenOn1QUPNCxtCqxuE8ea2uodBnMhz7tuW1ClysGU13ChUCNsztkR8/s1600/Lois.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" s5="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ3eUzv1Es-J4D8ss0feDSzr0-NkW7BRFVlr3yQSObMgaGBcRUxEt8ZBeWkLcfYeq3SJ0zNz5klU5BXFzs8KxUN2hyphenhyphenOn1QUPNCxtCqxuE8ea2uodBnMhz7tuW1ClysGU13ChUCNsztkR8/s1600/Lois.jpg" /></a></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com3tag:blogger.com,1999:blog-1986733808869297016.post-80194022698304263272011-01-12T16:55:00.003-06:002011-01-14T12:28:00.280-06:00Red Rover, Red Rover.....I have to say, this is by FAR the best money we - err, Santa - has ever spent on a toy! We are talking about the <a href="http://shop.mattel.com/product/index.jsp?productId=4413542#showDetails">Red Rover, Red Rover game by Mattel</a>. (I was not asked to review this and have received nothing for it.) <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFdLOzhU4RI5UFBJ_GZbh2Y-1_ZiEW4A7BicpXMald_oEZBQYdf7PnnrwAYUegnaY4AtQmKq57WtwCi3EwKZFmqZuq6afVoQfqBMUtMHqT9KBoi-nBzsqAH65feSmxh5EtMDjrm9-dW74/s1600/redrover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFdLOzhU4RI5UFBJ_GZbh2Y-1_ZiEW4A7BicpXMald_oEZBQYdf7PnnrwAYUegnaY4AtQmKq57WtwCi3EwKZFmqZuq6afVoQfqBMUtMHqT9KBoi-nBzsqAH65feSmxh5EtMDjrm9-dW74/s200/redrover.jpg" width="200" /></a></div><br />
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It was picked up as sort of an after thought. Christopher has a "thing" for dogs. His favorite sign is dog, and one of his favorite shows is Kipper the Dog. He is on the waiting list for his assist dog too. :) <br />
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It usually takes Christopher a while to warm up to a new toy, which is why we have so many still in the box! However, he was taken with this one right out of the box.<br />
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We played on the lowest level - Puppy level. You take the bones and spread them out face down. For most children, this would mean all over the room but it worked well just on the table. I put them all out at first, but that seemed a little too much. He wouldn't turn them over, so we also put them face up so that he could see the colors. You push the dog's nose and Rover asks for a colored bone. I put three bones in front of Christopher and he chooses a bone and inserts it in Rover's mouth (great OT work here!). Rover then tells you if you have the correct answer. Rover gives nice positive reinforcement when the answer is correct. If the answer is incorrect, he asks for another bone. <br />
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Christopher was able to get all but one correct! We were so happy, and so was he! Especially since there were several colors that we haven't reviewed yet, like pink, purple, brown, white, and black. The only one he did not get correct was black. <br />
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All in all, this was a great investment! For mobile kids - it can be used to wear them out. Hide the bones all over your house. The next level asks for colors, letters, numbers, and shapes. This will last us a while. It is also nice because you can make the game as long as it holds their attention. <br />
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I would think that it would not be too hard to make a file folder version of this game that you could customize accordingly. However, part of the fun is Rover's response. <br />
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Hugs!<br />
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Steph~<br />
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P.S. As soon as Blogger lets me put picures on the blog again, I'll post one of Red Rover.Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-25565937042700102102011-01-02T06:07:00.001-06:002011-01-02T06:14:33.286-06:00December Review (Long - sorry)First, we want to wish you all a Happy New Year! We hope 2011 brings great things for ALL of our friends out there.<br />
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December was crazy busy! Big Chris had a couple of 70 + hour work weeks. We have the usual holiday "stuff" and Christopher's birthday on the 19th (I STILL cannot believe he is 7 already!). We have been travelling to Chicago at least once a week for therapy(ies), and an occasional doctor appointment. Can I say again how much we LOVE our therapists? <br />
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<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/AVvXsEjIO5_sDiQZxWx31SUB1ZyRqRJtzPJbrp5-H8SvzyfOWSA_3rOFyFtcBGrm-PHQyThLtCfKiNJv6QNCGDy4ug1N_TUTHgKFWZuoJ2oNt0VR8N0fxaESGdK_ki_4UuviHcxXBluTRHe6br4/s1600/Christopher%2527s+Birthday+at+Moms+12_12_10+007.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIO5_sDiQZxWx31SUB1ZyRqRJtzPJbrp5-H8SvzyfOWSA_3rOFyFtcBGrm-PHQyThLtCfKiNJv6QNCGDy4ug1N_TUTHgKFWZuoJ2oNt0VR8N0fxaESGdK_ki_4UuviHcxXBluTRHe6br4/s320/Christopher%2527s+Birthday+at+Moms+12_12_10+007.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Obligatory Birthday Picture! </td></tr>
</tbody></table>We are really starting over from the beginning. Most of Christopher's life up to now has been getting him to the next month alive. I hope I don't jinx it, but he is finally healthy enough to concentrate on much of what he has missed out on. We have also picked up quite a few sensory issues along the way. So our therapy sessions are geared toward "waking up" those muscles that haven't been used, or were too floppy/loose to be useful, overcoming our multitude of sensory issues, and attempt to get the kid up and moving!<br />
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Here are a few pics of therapy fun:<br />
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<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/AVvXsEgmBDCpvFISk8BEMeMMSstmKbBhR5vd41fqCfUP96mz2nYNoJa8SRRpqOkTboMhw6jhXMhTagkWfAbZ7pea2Zi2gNdmU0wXFVEDjtpvDEog-kdG9qSiJ3HKIbcP0Bw0hA4L3g6pc2bUx14/s1600/All+pictures+from+camera+12_7_10+244.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmBDCpvFISk8BEMeMMSstmKbBhR5vd41fqCfUP96mz2nYNoJa8SRRpqOkTboMhw6jhXMhTagkWfAbZ7pea2Zi2gNdmU0wXFVEDjtpvDEog-kdG9qSiJ3HKIbcP0Bw0hA4L3g6pc2bUx14/s320/All+pictures+from+camera+12_7_10+244.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swinging in OT with Theratogs to "wake-up" those muscles!</td></tr>
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<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/AVvXsEh2O-wSTfgpb3d3glR0UabYy_NjFHsNKOa-1O9Ly1rOZzHgYOW9Yyc8Up8XxERzSoZwyP_sEFIxyVJdDY205Gx9TlvNSwqKgHjEkdJfv69oL1pFXWD4mY_GU3L1C4Z6EboAjQ3sIpFmZbk/s1600/December+pics+002.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2O-wSTfgpb3d3glR0UabYy_NjFHsNKOa-1O9Ly1rOZzHgYOW9Yyc8Up8XxERzSoZwyP_sEFIxyVJdDY205Gx9TlvNSwqKgHjEkdJfv69oL1pFXWD4mY_GU3L1C4Z6EboAjQ3sIpFmZbk/s320/December+pics+002.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">PT Pool Therapy - First time in the pool!</td></tr>
</tbody></table><br />
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One the home school front, we worked on lots of things this month. <br />
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We had books:<br />
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And a big hit was the sticker sheets from Oriental Trading. If you are looking for something fun (and a fine motor activity) these are fairly inexpensive. They are sold in packs of 12 and average about $3.00. Christopher really likes them, as long as he can do the ones with the larger stickers. Something we will continue to work on:<br />
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We worked on 4 piece puzzles. These are from a teacher's group that I belong to. Elaine made these. Lots of talent there!<br />
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We did worksheets. Again working on larger vs smaller concepts. He did really well with these! From Preschool Printable of the Day from <a href="http://www.preschoolpalace.org/">Preschool Palace</a>:<br />
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He worked on matching like items with these flashcards. I am not sure where I got them from (If you recognize them, please let me know so I can credit properly). However, they were from the UK so some of the items were not familiar to him. He did VERY well with these. <br />
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He LOVED doing various Do-A-Dot worksheets (which we gave to Grandparents as gifts this year). Definitely see more of those in our future. This one is from <a href="http://www.makinglearningfun.com/">Making Learning Fun</a>:<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwp9Wu8Z-OBY2co_tVeDa9zHYRnQTI1lJjs6VdpLrTJzAbut-WJRhT4r86LKvqMOUCC1h-2kVZwxA0zL6UgO09z6-m6RyIUK82Ge72HhW32zqB-_rzEpsS2xWMpqZ9oqaGDiS4J8-5k7k/s1600/SantaMagnet.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwp9Wu8Z-OBY2co_tVeDa9zHYRnQTI1lJjs6VdpLrTJzAbut-WJRhT4r86LKvqMOUCC1h-2kVZwxA0zL6UgO09z6-m6RyIUK82Ge72HhW32zqB-_rzEpsS2xWMpqZ9oqaGDiS4J8-5k7k/s320/SantaMagnet.gif" width="247" /></a></div><br />
We also did various parts and pieces from <a href="http://www.1plus1plus1equals1.com/PreschoolPacksNativity.html">Nativity</a> and <a href="http://www.1plus1plus1equals1.com/Christmas.html">Christmas </a>Tot packs at<a href="http://www.1plus1plus1equals1.com/"> 1+1+1=1</a> and the <a href="http://confessionsofahomeschooler.blogspot.com/2010/12/preschool-christmas-activities.html?utm_medium=facebook&utm_source=twitterfeed">Christmas pack at Confessions of a Homeschooler.</a> Go on over and check them out! Great resources. <br />
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We also had a Christmas themed sensory bin that I forgot to get a picture of. It had silver tinsel, plastic red and green ornaments, sparkly red and green pom poms, a dozen Christmas erasers in pairs, and jingle bells. He hated it. LOL! We will try again in January.<br />
I was feeling bad that we didn't get all of the things done that I wanted to do during December, but in posting it I think we did enough. <br />
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Not sure what my issue was, be we didn't get the tree up until the 23rd. I am not sure we even HAD one last year. Here is a picture to prove we made it and Santa visited:<br />
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This Christmas marked the FIRST Christmas that Christopher was able to go to midnight mass at our church. (Father frowns on pictures in church). We decided to try it because the "weather was frightful" and we knew there wouldn't be too many people there. We also heard rumors that the incense was going to be kept at a minimum. Plus, Aunt T was singing and Christopher and Big Chris have never heard her sing! He did VERY well. We sat away from the rest of the congregation (all 20 of em). He absolutely LOVED the organ music. Guess Mommy will have to get busy with some lessons soon. <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Soon it was Christmas morning, and what would Christmas be without Occupational Therapy - eerrrr, I mean presents! LOL! </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhErj06d_xbHA4MQa00ZzO_37-2nRdRdSH5704OhTomAFAqhLg4ckCpxWG8z-NtvickVFok2P5aSCZ6m4WI1zoQsI20hyphenhyphen5VBU2Rtd0ELXr1V9VGyWtFpRQP0_s9z-KVCp0rNfaJyrG28bo/s1600/December+pics+018.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhErj06d_xbHA4MQa00ZzO_37-2nRdRdSH5704OhTomAFAqhLg4ckCpxWG8z-NtvickVFok2P5aSCZ6m4WI1zoQsI20hyphenhyphen5VBU2Rtd0ELXr1V9VGyWtFpRQP0_s9z-KVCp0rNfaJyrG28bo/s320/December+pics+018.jpg" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDgznS58-xQlrYXXMwvijGWPkZ8yZ4eps3Lpa57OaLuzJLzU2e993FrZud95E0GSLyGEW6BoHrbmk9swbY-jc6DnScbdYlzGHdDm9QiaZxALHzm6Td_DgZUd79jWHCRfN_fkJpC8w6vqk/s1600/December+pics+040.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDgznS58-xQlrYXXMwvijGWPkZ8yZ4eps3Lpa57OaLuzJLzU2e993FrZud95E0GSLyGEW6BoHrbmk9swbY-jc6DnScbdYlzGHdDm9QiaZxALHzm6Td_DgZUd79jWHCRfN_fkJpC8w6vqk/s320/December+pics+040.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More gifts at Gama & Papa's House!</td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcRQ5420jvlh-W0px7KF3iTHnzp3_1PwEyhN9FnACDmID_vcflD9OHEJsXededi0fO1C_OgC17WCAsm1jFPb-6d70T3p2vyxb5HgNMZ04BNYV8MYMmRa4HNB4XLwruF8sGVfUDe-cnq8k/s1600/December+pics+035.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcRQ5420jvlh-W0px7KF3iTHnzp3_1PwEyhN9FnACDmID_vcflD9OHEJsXededi0fO1C_OgC17WCAsm1jFPb-6d70T3p2vyxb5HgNMZ04BNYV8MYMmRa4HNB4XLwruF8sGVfUDe-cnq8k/s320/December+pics+035.jpg" width="240" /></a></div>Looking out our front door Christmas Day. We didn't get the snow that the East Coast did, but it was pretty snow. <br />
Since this is so long, our next post will be our goals. Thanks for sticking with us!<br />
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Hugs!~<br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com4tag:blogger.com,1999:blog-1986733808869297016.post-64537033317056729932010-12-19T02:03:00.001-06:002010-12-19T02:07:26.112-06:00HAPPY 7th BIRTHDAY SWEET BOY!!!!!What a difference a year makes!<br />
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For those of you who have joined us since last December, you can read how it all started <a href="http://ourlittlemanhasmoore.blogspot.com/2009/12/happy-birthday-lil-man.html">HERE</a>. I am not going to go over it again here. :) I want to spend this time looking back at the past year...<br />
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Mommy and Daddy are sooooooo proud of you! You have worked so hard this year, and you can really tell. You rocked your leg surgery. Since your legs have been straightened, you have taken off - literally. You are working so hard in PT and OT every week. You are SUCH a good traveler, and we spend countless hours in the car. You have figured out that you like to show off. Part of your M.O. in therapy is to see how many people in the gym you can get to cheer for each accomplishment. It works every time. :)<br />
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You have been able to get into a swimming pool for the first time ever this year - and LOVED it. I see swimming lessons in your future. <br />
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You are communicating more with a combination of words, signs, pecs, pointing, etc. What ever it takes to get your point across, you get there. To help with the communication and to prepare you for a device or an IPad, we have an Ipod. There are a few games that you like to play on it, but I think it is hard for you to see or focus on. <br />
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You are working hard in school as well. We are still working on numbers. You recognize and help me count 1 thru 10. We are working on number correspondence. We have to figure out some way for you to color. With those backwards thumbs, it is hard for you to do a pincher grasp or to use scissors. We have tabletop push scissors and are working on our scissor skills as well. You like your books, but have to be in the mood for them. You like your movies - especially Spout channel (Barney, Kipper the Dog, Sesame Street) - better. You have mastered the concepts of Bigger and Smaller, and Matching - choosing from two flashcards, the one that matches. We will be working more on those, adding more cards or objects to the mix. You have discovered trucks, and love to yell at the semis as we pass them on the highway. <br />
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You are more interested in your world. You like to look out the window in the van and will often stay awake ALL the way to Chicago just to watch out the window. <br />
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We are working on your sensory issues, and hope to move forward with some vision therapy this year.<br />
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This has been our first year that we can really say Christopher has not had any serious illnesses! That has made a world of difference. We believe that we finally have a team of the right people in the right places. Now that he is healthier, we are really starting where most folks would be at around age 2. <br />
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For this coming year, we hope:<br />
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1. That you continue to stay healthy. Maybe gain a little weight?<br />
2. That you continue to work hard in PT and OT. We can really see it paying off. You will be getting AFO's and a stander soon. We can't wait to see how they help you progress!<br />
3. That you will continue to work on your communication. I can't wait to hear what is running around in that little head of yours. :)<br />
4. That you continue to work hard in your schooling. Every time I make a goal, you blow it out of the water and I have to re-work things. We will go as far as we can go. All I ask is that you try your best. <br />
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We love you Little Man!!!! We hope the next year is as fruitful as this one has been and more. <br />
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Here are some pictures for your enjoyment. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXIQ-zo_CkPQKAq5_lzn3PGhIkTBiFEMch4j3D-FSneQ5m3KN3DMC9QAS9VdCJwUFuJNYbCnttnMjO8y5Kg4NvDz-TuzHu14IeScf5JGSip745DovnVfZF0-M-NSHtut-B9teikcKYbuY/s1600/12944_1159549428535_1221777277_30377579_1717892_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXIQ-zo_CkPQKAq5_lzn3PGhIkTBiFEMch4j3D-FSneQ5m3KN3DMC9QAS9VdCJwUFuJNYbCnttnMjO8y5Kg4NvDz-TuzHu14IeScf5JGSip745DovnVfZF0-M-NSHtut-B9teikcKYbuY/s320/12944_1159549428535_1221777277_30377579_1717892_n.jpg" width="269" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day home from the Hospital - Dec. 23, 2003</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Christopher's Cowpokes - Buddy Walk - Oct. 2010</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjws-xnWypi-Bo6dyL2tgsa6Jax9Bd-Gsw3LjEgsX0NI8KPbShr-ImApEQdtuJmSpQN-sVlcyISnlX8HDmm4Foi4ivg9-eCOUzFAGa46PXBY_DW2GelPWVyM88aLq9Ju8NGM8GzFMNCfJE/s1600/Christopher%2527s+Birthday+at+Moms+12_12_10+007.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjws-xnWypi-Bo6dyL2tgsa6Jax9Bd-Gsw3LjEgsX0NI8KPbShr-ImApEQdtuJmSpQN-sVlcyISnlX8HDmm4Foi4ivg9-eCOUzFAGa46PXBY_DW2GelPWVyM88aLq9Ju8NGM8GzFMNCfJE/s320/Christopher%2527s+Birthday+at+Moms+12_12_10+007.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Birthday Little Man!!! 12-2010</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEianrSLlQL5MasVCDPc8eaC7-t3Nqch0QyrwAwGccAoWG0ifGG7wuL-AGYdI38ndDyDaFUByGfoBp06saiY6iR14ZpPZ5jhYIbcF7hQxhnW_UE_sj9OGRaV17a8IBJT6_jS5KsrYcZ4UBc/s1600/monkey.bmp" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEianrSLlQL5MasVCDPc8eaC7-t3Nqch0QyrwAwGccAoWG0ifGG7wuL-AGYdI38ndDyDaFUByGfoBp06saiY6iR14ZpPZ5jhYIbcF7hQxhnW_UE_sj9OGRaV17a8IBJT6_jS5KsrYcZ4UBc/s320/monkey.bmp" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What?!? How can I be 7 years old already???</td></tr>
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE618W4R2ZN5xTYJSJ-fQZcWgZyw8KAivuUImPOEhMBXIRLTD_E6Md8xtVlhirEZysDb_t87i4ajzu78K5ixvcYQ7-Lsnwi70ERVkF8ej8ZyaLjnE6NZTb5j95d1uk8qD5KUe-7y37Yto/s1600/50105_1221777277_7072954_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE618W4R2ZN5xTYJSJ-fQZcWgZyw8KAivuUImPOEhMBXIRLTD_E6Md8xtVlhirEZysDb_t87i4ajzu78K5ixvcYQ7-Lsnwi70ERVkF8ej8ZyaLjnE6NZTb5j95d1uk8qD5KUe-7y37Yto/s1600/50105_1221777277_7072954_n.jpg" /></a></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com3tag:blogger.com,1999:blog-1986733808869297016.post-1892497949174954082010-11-05T06:38:00.001-05:002010-11-05T06:50:28.402-05:00Thanksgiving Sensory BinI have been reading about sensory bins for awhile now. Homeschooling Moms who have it MUCH more together than I, take many different items and put them in a box to let their children explore. I am not entirely sure if it is a Montessori thing or a Charlotte Mason thing, but I know it is great for somebody with sensory issues. <br />
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You can put just about anything into your bin, and are only limited by your imagination and funds. :) Some people put beans, or things to make them smell good in theirs. Since this is our first attempt, I decided that we were going to keep it pretty mild. Plus, since Christopher doesn't eat by mouth I was not too keen on putting smell-good spices into the bin that he has never been exposed too. We try to keep our anaphylactic reactions to a minimum. <br />
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First, we put in a couple of bags of silk autumn leaves that we acquired at places like Michael's, Dollar Tree, and Wal-Mart. These had lots of neat shapes and bright colors to identify including yellow, orange, red, and purple. <br />
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Next we added some decidedly fake looking gourds and pumpkins that I bought from the Dollar Tree. We will keep an eye out for more realistic looking ones for next year. These are also Styrofoam, so if there was a meltdown there would be minimal damage if they went flying!<br />
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We next added a package of various sized, fall colored pom poms. The small ones are some of the smallest pom-poms I have ever seen! Again, another opportunity for color recognition with green, brown, tan/gold, and burgundy. Also an introduction to size with large, medium, and small. Heavy vs. light, and also hard vs. soft.<br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Last but not least, we included his Pilgrim, Native American, and pumpkin figures from this <a href="http://www.fisher-price.com/fp.aspx?st=900002&e=storeproduct&pid=38152&section=excl_view_all">Little People Thanksgiving Set.</a> We also put in a couple of turkey figures from his <a href="http://www.fisher-price.com/fp.aspx?st=900002&e=storeproduct&pid=37354&section=pre_lp_favorite">Little People farm set</a>. This kid LOVES his Little People! (If your little one loves the Little People too, you can go to the <a href="http://www.fisher-price.com/fp.aspx?st=2054&e=clubhouse&activity=storytime">website and watch movies, print off coloring pages, play games, listen to stories, etc.)</a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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So when we put it all together, it looked like this:<br />
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Tonight was the first time Christopher was given the bin. I was concerned that he would not put his hands in it. He does have trouble with reaching out to touch things - not sure if it is a sensory issue or a motor planning issue. Probably a combination of both. Truth be told, his Dad has the same issue - that is another post. I was pleasantly surprised that once I put his hands into the bin, he explored on his own. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIvN-4PuVPxHYGm39x76aJ6UqBnOSFyOTlIb06U0eLEebQH-T-kGLsHWENc-kwaj3uZExYiVf9zCWNtwk5XlrChtWA3aMzNP23iTiuDiynTWl6P_D6q3Yh4KdNarnn2h5IVjTy729PLT8/s1600/Thanksgiving+unit+016.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIvN-4PuVPxHYGm39x76aJ6UqBnOSFyOTlIb06U0eLEebQH-T-kGLsHWENc-kwaj3uZExYiVf9zCWNtwk5XlrChtWA3aMzNP23iTiuDiynTWl6P_D6q3Yh4KdNarnn2h5IVjTy729PLT8/s320/Thanksgiving+unit+016.jpg" width="320" /></a></div><br />
He is very much into "putting things in" or "putting things on (a shelf)". It was interesting that he did not take the items out and try to put them over the side of the bin. I was also surprised that he was able to "play" in the bin and look at what he was doing at the same time. Most of the time when introduced to something new, he can either listen or look. He cannot do both at the same time until he is familiar with the object, television show, etc. It is also very hard for him to look and feel at the same time. He did both with this bin, although I do think the pom-poms are maybe too soft. Either he didn't like them and ignored them or the texture was so soft that they did not give enough feedback for him to tell he had them in his hands. <br />
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For the next couple of days, I am just going to leave it out next to the toys that he plays with regularly. I'll sit him up and let him explore it in a more structured way at least a couple of times a day. I will probably be adding things as we go through the month. We have LOTS of Thanksgiving themed materials this month. I believe the sensory bin will be getting a work out. Hopefully, he still looks like this at the end of the month!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUFaTJpcyQtC32DNg73nPiyKUDxrp6sha5n388bWLHegIjFDwXI4lx75rQucTi8SW-2s2RHyTye4H7nmJ_hDZvIeTFJemmpLrshS76peJy8RKGU0HG5DxbKMkMz3wIY1n42di554StshI/s1600/Thanksgiving+unit+025.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUFaTJpcyQtC32DNg73nPiyKUDxrp6sha5n388bWLHegIjFDwXI4lx75rQucTi8SW-2s2RHyTye4H7nmJ_hDZvIeTFJemmpLrshS76peJy8RKGU0HG5DxbKMkMz3wIY1n42di554StshI/s320/Thanksgiving+unit+025.jpg" width="320" /></a></div><br />
Now if I could just get a picture that doesn't make him look like I have drugged him for the shot! Ha!Ha!<br />
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Keep an eye out for our next post! ~<br />
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Happy Fall!<br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com3tag:blogger.com,1999:blog-1986733808869297016.post-88546231483239515452010-11-01T03:34:00.001-05:002010-11-01T03:34:33.344-05:00Halloween 2010 at OneTrueMedia.com<div><embed src="http://www.onetruemedia.com/share_view_player?p=c74705e1e4fa97674e93e2" quality="high" scale="noscale" width="441" height="355" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=c74705e1e4fa97674e93e2&skin_id=1004&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:441px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt4" target="_blank" style="text-decoration:none;">Make an on-line slideshow at <span style="text-decoration:underline;">www.OneTrueMedia.com</span></a></div></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com3tag:blogger.com,1999:blog-1986733808869297016.post-40033278017892230142010-10-08T19:35:00.001-05:002010-10-08T19:35:07.089-05:00My Montage 10/8/10 at OneTrueMedia.comChristopher LIVE!<br /><br /><div><embed src="http://www.onetruemedia.com/share_view_player?p=c350bf58bd59dd0bbd39f7" quality="high" scale="noscale" width="408" height="382" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=c350bf58bd59dd0bbd39f7&skin_id=1702&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:408px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt2" target="_blank" style="text-decoration:none;">Photo and video editing at <span style="text-decoration:underline;">www.OneTrueMedia.com</span></a></div></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-87167034879821020242010-09-29T01:15:00.000-05:002010-09-29T01:15:38.887-05:00New stuff!!!The last couple days have been busy, busy, busy!<br />
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Monday, we went to Peoria to meet with a new doctor......a new Pulmonary doctor to replace the crazy one that we currently have. He came highly recommended by a friend. She said that he was very thourough.....that is a euphamism for "pack a lunch". LOL! However, he IS very thourough. He is now our new pulmonologist! Yeah! I would much rather have a pulmo at the same hospital that our cardilogist is at. <br />
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Unfortunately, I think I got a case of food poisoning. I have NOT been that sick in a L-O-N-G time. Not sure what that was, but when I got up at 4:30 Tuesday I felt like a new person. Whew!<br />
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Good thing because we were off to Chicago (LaRabida) for physical therapy today. We LOVE our PT up there! She is .....lively. Christopher grumped the whole time, but I think it was more because he wasn't running the show. LOL! Mike, our friendly DME guy was there to take measurements for Christopher's new stander! He measures right in between two sizes, so we are going to have to figure out if we can swing the larger one to make it last longer. Can't wait to get this! <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixKwU_ga6fBU8-YIppP0yKcIs8OpuXt3OfuGRRjP1ertGhAHZr48iGSsdOZqM2ool5Pd3a-vkVnz9UUg_A6qB0Lq_nxJGAwuEKFkjYv4XQmt2lu7WltD7L3OtXuf9Ip6nMYr-0kLwvMFU/s1600/tumble-forms-tristander-58_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" px="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixKwU_ga6fBU8-YIppP0yKcIs8OpuXt3OfuGRRjP1ertGhAHZr48iGSsdOZqM2ool5Pd3a-vkVnz9UUg_A6qB0Lq_nxJGAwuEKFkjYv4XQmt2lu7WltD7L3OtXuf9Ip6nMYr-0kLwvMFU/s1600/tumble-forms-tristander-58_1.jpg" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Christopher did really well. We were there for 2 hours. He is now bending his knees at a 90 degree angle and putting weight on them. We have found that he has one leg longer than the other. He is also showing signs of scoliosis. For some reason, he twists to the left (from the waist up) when he sits or stands. We don't know if this is some sort of stem thing or if he is compensating for something. We have lots of work to do. He is going to be getting measured for AFO's to help distribute weight evenly on his feet. He will also be getting arch support and a lift in one shoe. </div><br />
We also found out that at his next appointment, Christopher will get to try out a tryke! Apparently, there is a couple who modifies Radio Flyer Trykes for free. Christopher is on the list to get one of the trykes. Yeah! All falling in to place to get him outside more next year! <br />
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That is about it for now.<br />
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Hugs!<br />
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StephStephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1tag:blogger.com,1999:blog-1986733808869297016.post-57657221070394575122010-09-26T03:19:00.001-05:002010-09-26T03:21:02.087-05:00The Lowdown...Sorry for our lack in posts lately. There really hasn't been too much that is "blog-worthy" lately.<br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Christopher did get his casts off on Sept 9. It wasn't as bad as we anticipated. His legs actually looked like he had just come back from surgery. I was surprised that the incisions hadn't healed. They have since healed nicely. I'll post some pictures of that below.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He had another seizure a couple of days before the casts came off. Another bizarre one. These last few almost look like how you will sometimes jerk just as you are falling asleep. Except he does it hundreds of times. In between "jerks" he will normally look like he is trying to come out of it but will whine. This time, it was obvious that he was totally conscious! He would grab our arm and hold on like he was trying to stop the jerking. He would try to say "Mama" or "Dada" and would usually get cut off by another jerk. He was trying to sign "All done". Those aren't things that he would/could do if he was in "seizure fog". It lasted for about 15 minutes. Then just stopped - no easing out of it. He will normally go right into a deep sleep after a seizure....this one he sat straight up and wanted to hug and kiss both of us. He laughed and clapped his hands, then signed "Eat!" and grabbed for his feeding pump. </div><br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Ever since that seizure, he has been a talking fool! He used to babble all of the time "dadadad" etc. After he was really sick about 2 years ago, he never started it again. Now it is back! He is suddenly gaining a little weight (no ribs showing). He LOVES to count. He can count to "tree" (three) by himself. He is counting to ten with me. He counts to three, I say four and five, he says "sic" and tries to say seven. He is also trying to say eight, he lets me do nine and he will do ten. Then we clap. :) </div><br />
The house STILL has not sold. We are getting a little desperate here. We have had one showing the entire month of September. We dropped it $10,000. I am not sure what else to do. We do NOT want to be here for winter. Almost everything we own is at the other house already. We just can't move in yet, or we will have to pay rent. We can't afford both.<br />
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Big Chris started a new rotation at work. Not many of the people out there like this rotation, but we LOVE it! He is working 6 a.m. to 6 p.m.. One week he will work 2 days, then have 2 days off, then work the weekend (Friday, Sat, Sun). The next week, he is OFF 2 days, works 2 days, then has a 3 day weekend. Sooooo much easier to plan appointments around. He doesn't know it yet, but he is going to start participating in homeschooling. Christopher sometimes does much better when Dad asks him to do things. We are going to be taking advantage of that. <br />
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Otherwise, we are just running, running, running all over the state. Now that the casts have come off, Christopher is going to PT at least once a week in Chicago. He is doing REALLY well, and their goal is to get him to be able to at least climb 6 to 8 stairs (the amount that we have in our new house). They are going to order us a new stander that is properly fitted for him, and hopefully I can post about ordering a walker soon. We will see. <br />
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This next week we go to Peoria on Monday to meet a new (to us) Pulmonologist. If we like him, we are dropping pulmo in Milwaukee. I would feel more comfortable with a pulmo in Peoria anyway, as that is where his cardiologist is. On Tuesday, we go back to Chicago for PT again. Wednesday we have a home visit for our waiver program. She needs to see our new house. We are waiting to hear about an adventure that will be a separate blog post..... If that doesn't happen, we will be hitting the paint brushes at the new house on Big Chris's 3 day weekend. <br />
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Here are your pictures!<br />
<div align="center"><strong><u><span style="font-size: large;">Before Surgery (Crazy Legs):</span></u></strong></div><br />
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</div><div class="separator" style="clear: both; text-align: center;"><strong><u><span style="font-size: large;">After Surgery (Grover Legs):</span></u></strong></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">Steph</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"></div>Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com4tag:blogger.com,1999:blog-1986733808869297016.post-89613918388002813732010-09-05T15:45:00.002-05:002010-09-05T16:16:52.836-05:00Whole Lotta Nothin.....It seems like we have been busy but still not doing a whole lot around here. <br />
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Christopher is officially on the 5 day count-down to casts off. The first 2 weeks or so were pretty rough. The casts seemed to make him REALLY hot. He is used to flipping around in bed and couldn't really do that. His heart rate was also sky high - we never really did figure out if that was bacause he was in pain, mad, or if the casts were putting pressure on the blood vessles in his legs making it a little harder for his heart to pump. Now he has figured out how to swing them around and even crawl some! <br />
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Selling the house has gone S.L.O.W.L.Y!!!!!! We have dropped the price $10,000 and are having another open house at the end of this week. Our original Real Estate Agent suddenly retired right be fore Christopher's surgery, so we ended up with another from the same company. This week, the company has gone through some sort of re-organization, so everything was pretty much at a stand still. I told him I want this house sold and out of here by the first of November. Every time we move it is -5 degrees out - not this time. <br />
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We still have things to do at our new house - paint the bedroom, paint the hall and living room, and prime and paint some cabinets on the lower level. Those we will have to use KILZ on first and I want to get that done before cold weather sets in so that we can leave the windows open because of the fumes. This will go much faster once Christopher has his casts off and it is easier to take him back and forth. So far, we have painted Christopher's room, the Den and the bathroom. Then it is just amatter of getting things put away - UGH! <br />
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Since we have moved so many things over to the other house already, it has been a challenge on the homeschool front. I finally just decided that this would be our "vacation". We usually don't take time off except for holidays and hospital stays where he is REALLY sick. He forgets too much if we don't drill on it every day. We have still been working on animal names, counting to 10, sigining and other communication issues. I have noticed that he has been babbling more recently. He used to all of the time "dadadadad" etc. He is doing that again. He also says "Chi - ken" "Turkey" "Cow" "un (one)" "koo or two (two)" "tree (three)" "Sic (Six)" "Ten" "Get" "Kids" "Papa" "Go" and "tan-ku (Thank You)".<br />
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Our big goal for homeschool this year is learning the alphabet. We have started flashcards several times a day. I have soooooo much stuff for alphabet work - but it is all at the other house. I decided that we were going to go ahead and start calendar time - as soon as I have it all made up. I will post pics when it is finished. I will do a larger post on homeschool goals soon.<br />
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Otherwise, I have been spending entirely too much time on FB. I am glad that I have been able to connect with some old friends and make some new ones. However, I think I am going to be limiting my time there. Especially when we get to the new house and start in seriously with homeschooling. I have also left a few of my on-line file sharing groups. I seriously have sooooo much stuff - for all ages. I have 5 different e-mail addresses and they ALL have over 6000 messages in them! Once I get all of those dealt with and the files down loaded, I will feel much better. I am also blogging at <a href="http://livingwithspecialneeds.com/">Living With Special Needs</a>. When we get to the other house, I want to start cooking, gardening, and doing more than just laundry, diapers, and meds. :)<br />
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For our family, we added a page to the top of the blog with links for wishlists for Christopher's birthday and Christmas. There are lots of things there and at all prices. We haven't found any "one" thing that we want for him this year - he has everything! Most of the things I listed are just items that would be nice to have, and serve a dual purpose - school, play, therapy. If you find somethng on the list someplace other than the stores we used, by all means pick it up. We just used those places because they had on-line wishlists. <br />
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We are also getting ready for the Buddy Walk! Look for another post in the next day or so with the link to join the Buddy Walk team and/or donate to Christopher's Cowpokes!<br />
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Well, that is the lowdown for now! Hope everybody is doing well and enjoying this wonderful weather we are getting in the Midwest. I LOVE FALL! :)<br />
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Steph<br />
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P.S. <a href="http://www.pudgeandzippy.blogspot.com/">Our Buddy L.C</a>. is having surgery to take out her G-button on the 8th!!!!! Yeah L.C.! If you could all say a prayer for an un-eventful surgery and speedy recovery, I am sure her Mom & Dad would thank you!!! :)Stephaniehttp://www.blogger.com/profile/08323989778846355329noreply@blogger.com1