tag:blogger.com,1999:blog-88570315151019803642024-03-12T19:15:56.965-04:00Worlds Best Behaved KidHeart felt stories of one in a billion.http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8857031515101980364.post-48668211476836189132012-03-19T13:17:00.000-04:002012-11-27T21:03:52.259-05:00DiGeorge Syndrome Symptoms<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcRTe9s4r6146DqRtUT3Wkj30Mpgf33fauN700TCgrQqqBcfrhZ7hxBMyPzAokKL5V9NseAU8MIiiZGXHjDjkYRffFNqKTytX-26CKU1tzCHULjnEf-KCtWNGL_KXKtc6h0qeEa_FDlOML/s1600/DSC03846.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcRTe9s4r6146DqRtUT3Wkj30Mpgf33fauN700TCgrQqqBcfrhZ7hxBMyPzAokKL5V9NseAU8MIiiZGXHjDjkYRffFNqKTytX-26CKU1tzCHULjnEf-KCtWNGL_KXKtc6h0qeEa_FDlOML/s200/DSC03846.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">"Hey Dad, I just threw everything on the floor"</span></td></tr>
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<b><i>DiGeorge Syndrome symptoms</i></b> are usually pretty suttle and are not recognized until later in life. But there are some very obvious symptoms that are apparent at birth. Before doctors would take each symptom and give it a separate condition. But the root of all these conditions is the partial deletion of chromosome 22. Hence-22q11 deletion syndrome. There are, what I call slang terms, to call this syndrome, but DiGeorge Syndrome is the common name, some others are-<br />
<ul>
<li>VCFS</li>
<li>CATCH22</li>
<li>Cayler cardiofacial syndrome</li>
</ul>
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DiGeorge Syndrome symptoms vary for each individual. For my son Luke, the most obvious symptom were the holes in his heart, a cleft ear, and also he has a third nipple. I don't know if this can count as a DiGeorge Syndrome symptom. It doesn't seem that common, but you never know. from what I have read, DiGeorge Syndrome effects 1 in 4000 people and the numbers are probably more because of the symptoms being so varied. But here are some of the most common symptoms for DiGeorge syndrome.<br />
<ol>
<li> Heart problems. [One of the more prominent symptom ]</li>
<li>Facial disorders. [Cleft pallet-nasally voice, cleft ear [Luke had]</li>
<li>Low T-cell count </li>
<li>Hearing problems</li>
</ol>
These are the most obvious symptoms, some of the rest of the symptoms are found out as the person matures.<br />
<ul>
<li>Learning Disorders</li>
<li> ADD</li>
<li>immunity deficiency</li>
<li>Behavioral Problems</li>
<li>Mental Illness</li>
</ul>
Remember, these are only a few of the DiGeorge Syndrome symptoms. Also it is not usually hereditary. If you need more information on DiGeorge Syndrome, I left a link in my <a href="http://worldsbestbehaved.blogspot.com/2011/03/digeorge-syndrome22q112-deletion.html">Discovering DiGeorge Syndrome</a> post that is an excellent resource. There also is an awesome forum wee went to that is specifically for DiGeorge syndrome. The people are going thru the same experience with DiGeorge Syndrome and answered questions and supported us morally to with sharing their experience with us . I suggest you check it out. <a href="http://www.vcfsef.org/">http://www.vcfsef.org/</a><br />
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Meet The Family! </div>
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</script>http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-7585573705405532742012-03-18T22:29:00.000-04:002012-03-18T22:29:37.832-04:00Affordable Kid Toys<div class="separator" style="clear: both; text-align: center;">
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I probably bought the owners of all these toy stores a brand new BMW with all the money we have spent on toys for my son. Don't get me wrong, I love to see the joy on my sons face when we get him an affordable kid toy. I bet if I had a dollar back from every toy we bought him, we could buy a new car ourselves. One thing I do give my wife credit for is saving a bundle of money through on-line shopping and on-line coupons. I honestly don't know where she finds all the deals that she digs up. One of the better places we get coupons for is the childrens place. The <a href="http://childrensplaceprintablecoupon.com/">childrens place printable coupon</a> offer some pretty good money saving coupons that are only offered on-line. A lot of stores offer printable coupons that you can not get but on-line. Especially on larger priced items. The coupons are not only limited to toys but also for food and clothing. I just wish she could find some coupons for gas the way prices are now. But I will stick with the affordable kid toys. http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-25656318373951256692012-03-02T19:32:00.000-05:002012-03-25T13:18:36.656-04:00DiGeorge Syndrome In Children<div class="separator" style="clear: both; text-align: center;">
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<b><i>DiGeorge syndrome in children</i></b> is uncommon and is the effect an abnormality of chromosome 22, resulting in a absence of certain genes. DiGeorge syndrome can be found by using a checklist of certain different signs and symptoms. DiGeorge syndrome (also named congenital thymic hypoplasia, or third and fourth pharyngeal pouch syndrome) is a birth defect that can be effected by an abnormal chromosome and can affect the baby's immune system.<br />
<br />
A child with DGS have a thymus gland that may be underdeveloped or even totally deleted. Children who are slightly or severely ill at the time the vaccination is scheduled should probably wait until they are better. Children with DiGeorge syndrome should not be around crowds or other places where they can get infection.<br />
<br />
Genetic counseling and testing is a must for a woman with DiGeorge syndrome who becomes pregnant, because the DiGeorge syndrome in children can be detected prior to birth. Genetic counseling is recommended for parents of children with DiGeorge syndrome because the disorder can be detected prior to birth. Genetic counseling and testing is recommended for a person with DiGeorge syndrome who becomes pregnant, because the disorder can be detected before to birth.<br />
In no more than ten percent of cases, a human with VCFS inherits the deletion in chromosome 22 from a parent. Ninety percent of people with total repair as a baby develop a progressively leaky pulmonary valve as the heart grows to its adult size but the valve does not. Almost ten percent of children who devolop the features velo-cardio-facial syndrome do not usually have a deletion in the chromosome 22q11.<br />
<br />
Immune deficiency of how bad, hypocalcemia (which may lead to seizures) and hypoparathyroidism are some of the leading features of DiGeorge in children, (although not of Shprintzen syndrome which is characterized more by cleft palate and speech difficulties). Immune deficiency is usually not the most common anomalies in VCFS, but the problem is usually the hardest to deal with for the effected person and their families. <br />
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The disorder in children is usually found by identifying birth defects characteristic of complete DiGeorge, including heart defects, low levels of calcium, from the result of the missing parathyroid gland, esophageal abnormilities and facial defects such as low-set ears, wide-set eyes and a tiny jaw. DiGeorge syndrome causes migration defects of neural crest -derived tissues, particularly affecting development of the third and fourth Branchial pouches. All of the SCID abnormalities lead to low T cells and many types of SCID are in common with impaired production of T cells. For more info you can check out the <a href="http://www.mayoclinic.com/">mayo-clinic</a>. I also have another post on<a href="http://worldsbestbehaved.blogspot.com/2011/04/digeorge-syndrome-symptoms.html"> symptoms</a><a href="http://symptoms./">.</a> Keeping your house clean of dirt and <a href="http://advicequest.blogspot.com/2011/06/house-washing-massachusetts.html">mildew</a> helps to stay healthy also.http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-36275685613585620252012-02-15T12:08:00.000-05:002012-02-15T12:08:03.757-05:00Take A Tour<div class="separator" style="clear: both; text-align: center;">
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I would like to take this opportunity to tell you about my new web-site <a href="http://hopesarehigh.com/"><span style="color: blue;">Hopes Are High!</span> </a>It is still new and will be adding more articles as I go along. Any input or comments would be greatly appreciated! I also have a <a href="http://advicequest.blogspot.com/">Pressure Washing</a> blog that has a lot of information on <a href="http://advicequest.blogspot.com/2011/07/deck-cleaning-before-and-after.html">house washing</a> or almost any other pressure washing advice you may think of. Comments greatly appreciated there to!http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-23350560407193562142011-04-18T15:40:00.000-04:002011-04-18T15:40:43.472-04:00A Note Of Thanks<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">MY SISTER AND LUKE</span></td></tr>
</tbody></table><span style="font-size: large;">A note of thanks for my family. A note of thanks to my friends. I would like to thank everybody who sent me a birthday wish note. Everybody has been very supportive in my recent events of life. Especially my family. I really do not put much thought into my birthday anyway. My son was more excited about the birthday cake and blowing the candles out. Its tough always being stuck at 25 years old . Most women lie about their age, most men don't act it! Look at my sister, she is almost 30!! I heard a birthday candle company burnt down, everybody stood around and sang happy birthday. And again a note of thanks to everybody!!! </span><a href="http://thinkexist.com/quotations/birthday/">http://thinkexist.com/quotations/birthday/</a><br />
<span style="font-size: large;">Check out my other site to!! <a href="http://advicequest.blogspot.com/">CLICK HERE</a></span>http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-55659661038664482992011-04-05T16:22:00.000-04:002011-04-05T16:36:09.069-04:00A Walk In The Park<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><b>MY BUDDY</b></td></tr>
</tbody></table> <span style="font-size: large;"> Definitely</span><span style="font-size: large;"> a walk in the park it was not. These past few weeks for Luke have been so terrible. We finally found out the cause of his pain he has been waking up with. After all the walk in the doctors, we finally found it was a double ear infection. It's pretty much gone now, thank god! He really has had a few ear infections and I wonder if his DiGeorge Syndrome has anything to do with it. One of the effects of this DiGeorge Syndrome is a low t-cell count. Luke was right on the safe line on the t-cell count. But when he does get sick, It's no walk in the park for him. It hits him hard, but he does seem to recover pretty diligently.</span><br />
<span style="font-size: large;">It's so good to have him back to himself. Our local library offers free passes to local events, and one of them is to the airplane museum. When we walked in , you should of seen the look on Luke's face! To be honest, I was just as amazed as he was. We took a walk around the whole museum, and in the whole time we were there he did not stop smiling. They even had a table you could walk up to and build a little parachute made out of a Dixie cup and a piece of thin plastic that actually works! Finding a place to park was easy and only a short walk to the entrance. But otherwise we had a great time there.</span><br />
<span style="font-size: large;"> We were also able to take a walk in the park across the street from where we live. We haven't been able to because of his ear infection. It pretty much grounded us for a couple of weeks. We usually take our walk in the park every day, its a ritual for us now. He gets some good exercise and some fresh air. We also frequent Stanley park. That's a nice place to take a walk thru. You can feed ducks and also have a wonderful playground for kids. Its one of the better parks in our area besides some of the other good state park by us .<a href="http://www.nps.gov/index.htm">http://www.nps.gov/index.htm</a> Here is a good link for any information on any parks in U.S. Its an awesome site just to even check out! </span><br />
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<span style="font-size: large;">I will be posting more information on the DiGeorge Syndrome with some of the symptoms and effects and some good links for support and information. I really would like to know who said that life is just a walk in the park, they must be a pretty happy person! </span>http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-19469108870072550902011-03-20T01:35:00.000-04:002012-03-25T13:20:56.655-04:00Discovering DiGeorge Syndrome<div class="separator" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;">
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Before I talk about the <b><i>discovering DiGeorge Syndrome</i></b> I want to tell you on how well, my son Luke never ceases to amaze me. He has been sort of under the weather and his spirits are always so good. Only if we all could be like that. Keep the child in us.We went to the Chester fiddle fest. My father in law plays the guitar in it. There was a hay ride with the boy scouts telling the history of making maple syrup. Luke seemed to enjoy it even though he wasn't quite himself.<br />
But on a more serious note I would like to tell you about DiGeorge Syndrome or 22q11.2 Deletion Syndrome. When we had Luke we had never even heard of DiGeorge Syndrome. For the first three months Luke was not gaining any weight.What was happening was that his heart had three holes in it [ 1 Large, 2 Small ] and not enough blood was being pumped, so his body was focusing on working the heart harder rather than growing .It was our primary doctor, that I must say was one of our best doctors, that led us to the cardiologist, which led us to the genetic councilor. She was the one who diagnosed him with 22q11.2 Syndrome, or DiGeorge. Discovering this was very emotional. <br />
What this syndrome is, a small piece of chromosome #22 is missing. Conditions of this syndrome can vary. The most common sign is the heart problems at birth {Luke holes} and also small distortions of the face[ Luke has a cleft ear]. A cleft pallet is also common in DiGeorge , leading to a nasally voice. He also had a third nipple which is not that pronounced. The problem with discovering DiGeorge Syndrome is that besides the heart problems and the small distorted facial features, most of the signs are sutler. Learning disabilities are definitely associated with this syndrome as is ADD . Luke definitely has this. It's not hat he's not smart, he just needs one on one. His attention span can be nill in groups. There are other types of names they use beside DGgeorge, depending on the symptoms.The craziest part is that DiGeorge / 22q11.2 deletion is said to be non-heredity. But my sisters son has it. His signs of DiGeorge were sutler and was not discovered until he was older, with his learning disabilities, [ I think it's because he's lazy!! LOL]. I will definitely post more on this subject as it is an important part of our family's lives. Here is a link to a very informative site <a href="http://ghr.nlm.nih.gov/">http://ghr.nlm.nih.gov/ </a><br />
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As for Luke, he went to Bostons Children's Hospital for open heart surgery to close the holes. Everything went absolutely great, a total success. As bad as the reason we were there, it was a wonderful humbling experience due to the professional, caring and any other good words, people at the Bostons Children Hospital. I will definitely write another post on my experience with them and express our gratitude. God bless them! And if anybody has any Questions about discovering DiGeorge, please feel free to ask!<script type="text/javascript">
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</script>http://advicequest.blogspot.com/http://www.blogger.com/profile/02670051882298760047noreply@blogger.com0tag:blogger.com,1999:blog-8857031515101980364.post-31124915028881542722011-03-17T04:18:00.000-04:002012-03-25T12:58:26.372-04:00Worlds Best Behaved Kid<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRWB4QAkUqj_eAUIPVNRTNnwRhpDPdWsLHCzeEZPYMlqQe6cV9HV-vo_kYmt_b30y2TVtT_S5UiKfTpIpc2HSqM94j91w9PY0pBlOXv9cQLT6Ro2nTbnENaoQS4tYfv7i2Jit8hB8Wx-Aq/s1600/12558994037C1c54.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5584966232379142482" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRWB4QAkUqj_eAUIPVNRTNnwRhpDPdWsLHCzeEZPYMlqQe6cV9HV-vo_kYmt_b30y2TVtT_S5UiKfTpIpc2HSqM94j91w9PY0pBlOXv9cQLT6Ro2nTbnENaoQS4tYfv7i2Jit8hB8Wx-Aq/s320/12558994037C1c54.jpg" style="cursor: pointer; float: left; height: 117px; margin: 0pt 10px 10px 0pt; width: 120px;" /></a><br />
My poor son. He really is the <b><i>worlds best behaved kid</i></b>. Hes been up at night in pain. I have brought him to the doctors twice, and both times the doc said everything looked good no redness or swelling. Then we brought him to an ear nose and throat doctor., and everything checked out OK. so now I am leaning towards a toothache. He has a dentist appointment at the end of the week. He was a well behaved kid at the doctors office. I was proud of him. This is why I created this blog so I can show and vote him the world best kid for the day!<br />
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Through all the tough nights he wakes up still in a great mood. He had a huge breakfast between home and at school. Most of the snow is gone and we have been able to bring him to the park. He loves it there. Here is a small video of him at the park. I don't know if anybody will actually read these posts, but it would be great to hear from other people and their stories of their children or relative of why you think u know the <span style="font-weight: bold;">WORLDS BEST BEHAVED KID.</span></div>
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