tag:blogger.com,1999:blog-89467494313990962542024-03-12T20:17:09.697-04:00Meredith LewisOur adventures with Meredith!LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.comBlogger87125tag:blogger.com,1999:blog-8946749431399096254.post-25897846519152408322012-04-09T09:09:00.008-04:002012-04-09T13:08:15.834-04:00Easter at the Cape<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-YbwD1EYLXFE/T4Lgvgt-bxI/AAAAAAAAAek/aygzrim35-0/s1600/Easter2.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://1.bp.blogspot.com/-YbwD1EYLXFE/T4Lgvgt-bxI/AAAAAAAAAek/aygzrim35-0/s400/Easter2.JPG" alt="" id="BLOGGER_PHOTO_ID_5729388782809935634" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-SIX-hXb1ZJ4/T4LgvGA7j3I/AAAAAAAAAeY/AM6ezws4nPs/s1600/Easter4.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://4.bp.blogspot.com/-SIX-hXb1ZJ4/T4LgvGA7j3I/AAAAAAAAAeY/AM6ezws4nPs/s400/Easter4.JPG" alt="" id="BLOGGER_PHOTO_ID_5729388775641681778" border="0" /></a><br />We had a great Easter on the Cape this weekend. So relaxing and nice there this time of year. We decorated eggs and did an easter egg hunt around the living room. We attempted doing an egg hunt at the Mashpee Commons but it turned into mayhem with way more people there than expected and was described by one parent as a "complete bloodbath", so we shifted gears and did a home hunt instead. Meredith was so funny discovering her Easter basket in the morning - she couldn't stop laughing. How many times can two people say "easter basket" in 54 seconds? You are about to find out! Spoiler alert - my mommy voice is at it again (do I really sound like that???) and we all just woke up so we get a pass on hair and wardrobe : )<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw-JfJNadmNKV-aZTwmfXY6uTguY7-HYymW6F10jd9UY0F5wPr-i1ALe0IxukRo45dP5YEJcV74YOhqynrIKw' class='b-hbp-video b-uploaded' frameborder='0'></iframe>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com1tag:blogger.com,1999:blog-8946749431399096254.post-55209929484619348972012-04-05T19:57:00.002-04:002012-04-05T19:58:08.265-04:00School pictures<a href="http://4.bp.blogspot.com/-dish55jYgw4/T34xiEbDv2I/AAAAAAAAAeA/HZ94WkeQdng/s1600/img039.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 322px; height: 400px;" src="http://4.bp.blogspot.com/-dish55jYgw4/T34xiEbDv2I/AAAAAAAAAeA/HZ94WkeQdng/s400/img039.jpg" alt="" id="BLOGGER_PHOTO_ID_5728070237434396514" border="0" /></a><br /><a href="http://1.bp.blogspot.com/-l7bSRCzs57U/T34xiRkjTRI/AAAAAAAAAeM/Ua09Slee1lM/s1600/img038.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 319px; height: 400px;" src="http://1.bp.blogspot.com/-l7bSRCzs57U/T34xiRkjTRI/AAAAAAAAAeM/Ua09Slee1lM/s400/img038.jpg" alt="" id="BLOGGER_PHOTO_ID_5728070240963874066" border="0" /></a>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com1tag:blogger.com,1999:blog-8946749431399096254.post-6195129274438028162012-04-05T16:42:00.005-04:002012-04-09T09:01:20.014-04:00Easter Egg Hunt<a href="http://3.bp.blogspot.com/-r3ofqq_RvJU/T34EDMw22cI/AAAAAAAAAdo/BWLcVHa9hCw/s1600/photo.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/-r3ofqq_RvJU/T34EDMw22cI/AAAAAAAAAdo/BWLcVHa9hCw/s400/photo.JPG" alt="" id="BLOGGER_PHOTO_ID_5728020229074115010" border="0" /></a><br /><a href="http://4.bp.blogspot.com/-DGHJ53TJoq4/T34EDsnxfWI/AAAAAAAAAd0/lQEh9qnMQR0/s1600/photo.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://4.bp.blogspot.com/-DGHJ53TJoq4/T34EDsnxfWI/AAAAAAAAAd0/lQEh9qnMQR0/s400/photo.JPG" alt="" id="BLOGGER_PHOTO_ID_5728020237625949538" border="0" /></a><br />We don't know how she managed to do it, but somehow Meredith SMOKED her competition in the Easter Egg Hunt at school by finding 10 eggs and scoring 50 points!LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-36042566477540823632012-03-22T21:07:00.004-04:002012-03-22T21:56:03.283-04:00Pancakes in the Park<a href="http://2.bp.blogspot.com/-nfPpUCgfZD4/T2vYLSf7QbI/AAAAAAAAAdc/Xm7fqcUo9Ko/s1600/FieldTrip.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 262px; height: 400px;" src="http://2.bp.blogspot.com/-nfPpUCgfZD4/T2vYLSf7QbI/AAAAAAAAAdc/Xm7fqcUo9Ko/s400/FieldTrip.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5722905439960252850" /></a><br />This is the face of a girl who just had her favorite menu item: pancakes with strawberries and whipped cream.... outside at the park! 82 degrees in March makes for a beautiful day for a walking field trip to the Commons. Mer has been doing really well. Seizures have been pretty well controlled; she still has breakthroughs every 10 days or so, but most have just been single seizures. Thanks to a Melatonin increase, her sleeping has been beautiful and we are all enjoying that little perk! Her gross and fine motor have been status quo for quite some time and the emphasis has really shifted to communication. We now own several switches which we connect to the computer or toys to help teach cause and effect. Meredith doesn't have purposeful use of her hands so she seems to prefer when we mount the switch by her head. Then she uses her head to tap the switch. At times, it appears deliberate, but it's still hard to tell. So we practice, practice, practice with the hope that we'll develop a platform from which to build. It's a long and very slow process, but we are used to abandoning timelines with our little Snarfy, we just keep at it. Mer pretty consistently responds to my and Greg's voices with smiles and eye contact and that definitely keeps us going regardless of what other progress is being made : )LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com1tag:blogger.com,1999:blog-8946749431399096254.post-79746349762706002252012-02-16T11:08:00.004-05:002012-02-16T11:20:20.840-05:002012... A paradigm-shifting year"2012 - A paradigm-shifting year....." I like the sounds of that! Below is a great article where two Rett moms (one being the <strong style="font-weight: normal;">Executive Director of Rett Syndrome Research Trust UK</strong>) discuss the science, the reversal, and all the reasons we have reason to be hopeful. In plain English to boot!<br /><br /><a href="http://reverserett.wordpress.com/2012/02/15/up-the-garden-path-a-short-conversation-about-rett-research-treatment-and-the-validity-of-hope/">http://reverserett.wordpress.com/2012/02/15/up-the-garden-path-a-short-conversation-about-rett-research-treatment-and-the-validity-of-hope/</a>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com2tag:blogger.com,1999:blog-8946749431399096254.post-70001263294124478722012-02-09T19:40:00.003-05:002012-02-09T19:48:13.851-05:00Certificate of Achievement<a href="http://2.bp.blogspot.com/-9Qp2JC8FKTo/TzRn9v1tS5I/AAAAAAAAAdQ/DwDSuQNdtOs/s1600/photo.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://2.bp.blogspot.com/-9Qp2JC8FKTo/TzRn9v1tS5I/AAAAAAAAAdQ/DwDSuQNdtOs/s400/photo.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5707300938296675218" /></a>Meredith has been super alert and attentive lately and showing improved eye contact and focus. We were thrilled when school noticed too. She came home with this fancy award last week...LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-57813273412297555982012-02-09T16:06:00.006-05:002012-02-10T10:13:38.936-05:00Go Pats!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-zKmslqoBzX8/TzQ13IpeE2I/AAAAAAAAAc4/W341R2d0FHo/s1600/Brady-Back.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://1.bp.blogspot.com/-zKmslqoBzX8/TzQ13IpeE2I/AAAAAAAAAc4/W341R2d0FHo/s400/Brady-Back.JPG" alt="" id="BLOGGER_PHOTO_ID_5707245849115759458" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/-uA6CFYKn2j8/TzQ148391JI/AAAAAAAAAdI/RH7AmK3mbIw/s1600/Mer-Brady.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://3.bp.blogspot.com/-uA6CFYKn2j8/TzQ148391JI/AAAAAAAAAdI/RH7AmK3mbIw/s400/Mer-Brady.JPG" alt="" id="BLOGGER_PHOTO_ID_5707245880315073682" border="0" /></a><br />The good news is the Patriots made the Superbowl again this year! That's about the end of the good news as far as the Pats go. But Meredith did look mighty cute in her Tom Brady T!LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-15033975918063622432012-02-09T15:39:00.004-05:002012-02-09T16:04:58.014-05:00Disney World!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-9lMyJNeW98k/TzQ0SXGOjxI/AAAAAAAAAcg/bcTZ-yc6gfU/s1600/394584_364397270242175_100000157140418_1668842_971783014_n.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 274px; height: 400px;" src="http://2.bp.blogspot.com/-9lMyJNeW98k/TzQ0SXGOjxI/AAAAAAAAAcg/bcTZ-yc6gfU/s400/394584_364397270242175_100000157140418_1668842_971783014_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5707244117827686162" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-SnL3-IYK4yk/TzQ0SrbU6_I/AAAAAAAAAco/kcozRqN13d0/s1600/399710_364411093574126_100000157140418_1668859_1741518533_n.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-SnL3-IYK4yk/TzQ0SrbU6_I/AAAAAAAAAco/kcozRqN13d0/s400/399710_364411093574126_100000157140418_1668859_1741518533_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5707244123284892658" border="0" /></a><br />I have fallen behind on my blogging recently! January was a busy month for us but one of our highlights was taking Meredith to Disney World! We stayed with Greg's Grandmother who has a place right near the park. Meredith was a star traveler, had no seizures and she was extra happy and vocal the whole trip - yay!! Upon entering the park, Meredith got her "first visit" pin and we were off to the races. We did a character breakfast where several characters came around to the tables to greet the children. It was very much our speed and Mer got to add some new signatures to her autograph book. The characters were all very sweet and attentive with her. She took a real liking to Mickey Mouse and while we were there whenever we said "mickey mouse", she would smile. The whole park is super handicap-friendly and we were able to wheel her right on several rides. We took her on "It's a Small World" and her favorite, "Carousel of Progress". She also saw the 3D Captian Eo show. She watched everything and really took in all the sights and music. We walked around a lot and hit my favorite part, Around the World at Epcot. She definitely knew she was somewhere special. We got in some great quality time with Gody who was an amazing host and also a huge help with Meredith. Thank you Gody for a great memory!!LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-13023265127482387292012-01-01T15:46:00.003-05:002012-01-01T15:50:57.555-05:00First Family Movie<a href="http://3.bp.blogspot.com/-xNLuO_v238s/TwDGiW4LvPI/AAAAAAAAAcU/dW7l82BVBAw/s1600/movie.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://3.bp.blogspot.com/-xNLuO_v238s/TwDGiW4LvPI/AAAAAAAAAcU/dW7l82BVBAw/s400/movie.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5692768222555389170" /></a><br />We hit the theater today to see our first movie as a family - The Muppets! It was awesome and Meredith loved it. She dozed here and there, but when she was awake was really interested in watching - so much fun.LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-30244725771750603442012-01-01T09:30:00.008-05:002012-01-01T10:39:29.104-05:00A Happy Happy New Year<a href="http://1.bp.blogspot.com/-sVijt0CPSbw/TwBvyisYXgI/AAAAAAAAAcI/MmMPgVyTFmk/s1600/Pacer.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 302px; height: 400px;" src="http://1.bp.blogspot.com/-sVijt0CPSbw/TwBvyisYXgI/AAAAAAAAAcI/MmMPgVyTFmk/s400/Pacer.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5692672843093401090" /></a>Meredith's gait trainer just arrived and she test drove it for the first time this morning. She took to it instantly! She didn't go very far, but she did move a little bit and was trying to take "steps." It was so inspiring to see her trying so hard and really trying to move her legs in the walking motion. It was amazing. We think this is going to be a great mobility option for her. Yay - Mer's world just got a little bigger! If you look closely, you can also see Meredith's manicure, courtesy of Santa's Hello Kitty nail polish!! Yesterday the three of us got to meet her new baby cousin John - congratulations Auntie Beth and Uncle Paul. And now this.... a great start to 2012! <div><br /></div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com3tag:blogger.com,1999:blog-8946749431399096254.post-16979878410750544772011-12-21T18:45:00.002-05:002011-12-21T18:50:27.288-05:00Richie Hebner!<a href="http://4.bp.blogspot.com/-RDfY2bVKuUA/TvJwjYyCOMI/AAAAAAAAAb8/-yXPzmARaF8/s1600/img023.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 291px; height: 400px;" src="http://4.bp.blogspot.com/-RDfY2bVKuUA/TvJwjYyCOMI/AAAAAAAAAb8/-yXPzmARaF8/s400/img023.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5688733032572401858" /></a><br />Today at school Meredith got to meet Richie Hebner. He was a third baseman for the Pirates. He is the father of the teacher in Meredith's inclusion class. If you look closely at the picture, you can she she got to try on his shiny '94 Toronto Blue Jays World Series Championship ring!! <div><br /></div><div><br /></div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-84316002610295464152011-11-27T19:12:00.003-05:002011-11-27T19:34:50.077-05:00Polar Express!<a href="http://2.bp.blogspot.com/-1T447_9xi78/TtLXAmzDjtI/AAAAAAAAAbw/91yY7LxQdhg/s1600/MerDad-PolarExpress.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/-1T447_9xi78/TtLXAmzDjtI/AAAAAAAAAbw/91yY7LxQdhg/s400/MerDad-PolarExpress.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5679838485482278610" /></a><br /><a href="http://2.bp.blogspot.com/-Kj4a-IN9yPE/TtLW_nxbhQI/AAAAAAAAAbo/AzSCE3ZZgHA/s1600/photo.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://2.bp.blogspot.com/-Kj4a-IN9yPE/TtLW_nxbhQI/AAAAAAAAAbo/AzSCE3ZZgHA/s400/photo.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5679838468564026626" /></a><br /><a href="http://1.bp.blogspot.com/-1w2LOWEcJ7c/TtLW-4Edg2I/AAAAAAAAAbY/R6i9trDjIjQ/s1600/100_0759.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://1.bp.blogspot.com/-1w2LOWEcJ7c/TtLW-4Edg2I/AAAAAAAAAbY/R6i9trDjIjQ/s400/100_0759.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5679838455758947170" /></a><br /><a href="http://2.bp.blogspot.com/-F7ImZk6-tKQ/TtLW-uxXCgI/AAAAAAAAAbM/J4Hh46cUbcs/s1600/100_0754.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/-F7ImZk6-tKQ/TtLW-uxXCgI/AAAAAAAAAbM/J4Hh46cUbcs/s400/100_0754.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5679838453262912002" /></a><br /><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>Today we went on a Polar Express train ride to the North Pole! Which, in case you did not know, has relocated to the Readville train station : ) The event benefited Saint Catherine of Siena School and was organized by a mom we met recently at a couple Rett Syndrome functions, Paula Curly - an awesome mom who does so much for Rett Sydrome and is just an inspiration. One plus of an event organized by a Rett mommy is that they had a special needs friendly car. We left Norwood Central at 12:30 and went on a 50 minute train ride where the conductor read the Polar Express book to all the kids and we got to see Santa's elves. Meredith was given a bell, candy cane and cookie and she tried hot chocolate for the first time. We saw frosty the snowman and then Santa himself made an appearance. It was a lot of fun and we got to see a few of the new friends we have made in the Rett community. A great way to end our long Thanksgiving weekend and kickoff the holiday season!</div><div><div><br /></div></div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-72888883941937870892011-11-17T17:02:00.003-05:002011-11-17T17:04:21.767-05:00Wonder Woman at last!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-p2U9h2HrvAo/TsWE4Ou1NQI/AAAAAAAAAbA/X4mN1zo48MU/s1600/IMG00174-20111030-1456.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-p2U9h2HrvAo/TsWE4Ou1NQI/AAAAAAAAAbA/X4mN1zo48MU/s400/IMG00174-20111030-1456.jpg" alt="" id="BLOGGER_PHOTO_ID_5676089006932440322" border="0" /></a><br />Last year Meredith was in the hospital over Halloween so she never got to be Wonder Woman as planned. So it's been a long time a coming, but at last Wonder Woman made her appearance this Halloween.LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-83486106156180577422011-11-17T15:51:00.002-05:002011-11-17T15:57:48.119-05:00Rett research moving forwardMore great stuff happening with Rett research.<br /><br /><a href="http://www.uab.edu/news/latest/item/1850-uab-researchers-seek-to-reverse-rett-syndrome-in-children">http://www.uab.edu/news/latest/item/1850-uab-researchers-seek-to-reverse-rett-syndrome-in-children</a>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-75609879190651959292011-10-28T22:47:00.004-04:002011-10-28T22:50:28.952-04:00Boston Marathon 2012 - Support Team Rett!I will be running the upcoming Boston Marathon to raise money and awareness for Rett Syndrome. Here is the link to my fundraising page where you can see a short video that tells Meredith's story and allows you the opportunity to donate if you wish. Thank you so much!!<div><br /></div><div><a href="http://www.crowdrise.com/meredithlewis">http://www.crowdrise.com/meredithlewis</a></div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-64277186322460069052011-10-25T09:46:00.003-04:002011-10-25T10:15:07.902-04:00Thank you Steve JobsAs a long-time Apple fan, I instantly fell in love with the ipad as a toy that allowed me to cruise around online, read and play games. I had no idea when I first got it how beneficial it could potentially be for Meredith. We are beginning to explore various apps that hopefully will one day help Meredith communicate. Therapists are finding this to be an amazing tool for tapping into the minds of non-verbal kids. We are starting with very simple concepts - when she touches the screen, something happens. Here is an interesting 60 Minutes segment that shows how it works. I love the bit about the little boy who they discovered loved opera. Who knew!? These kids have ideas and thoughts and feelings in there - it's just a matter of getting them out.<br /><br /><embed src="http://cnettv.cnet.com/av/video/cbsnews/atlantis2/cbsnews_player_embed.swf" scale="noscale" salign="lt" type="application/x-shockwave-flash" background="#333333" allowfullscreen="true" allowscriptaccess="always" flashvars="si=254&&contentValue=50113681&shareUrl=http://www.cbsnews.com/video/watch/?id=7385686n&tag=contentBody;storyMediaBox" height="279" width="425"></embed>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-65286602798323200792011-10-18T18:58:00.005-04:002011-10-20T15:34:36.782-04:00Inclusion Gym Class<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-9On6OL5kE6o/Tp4GYzZ17WI/AAAAAAAAAaY/-nU2e4BaCYE/s1600/Soccer2.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 304px;" src="http://1.bp.blogspot.com/-9On6OL5kE6o/Tp4GYzZ17WI/AAAAAAAAAaY/-nU2e4BaCYE/s400/Soccer2.jpg" alt="" id="BLOGGER_PHOTO_ID_5664972404463889762" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-vAD18tbfWYQ/Tp4GYuuX0cI/AAAAAAAAAaI/DTrRlACyfA4/s1600/Soccer1.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 310px;" src="http://2.bp.blogspot.com/-vAD18tbfWYQ/Tp4GYuuX0cI/AAAAAAAAAaI/DTrRlACyfA4/s400/Soccer1.jpg" alt="" id="BLOGGER_PHOTO_ID_5664972403207819714" border="0" /></a><br />Today school sent home a few pictures from Inclusion Gym Class. MerBear made Dad proud today as she played soccer for the first time! There are a few little girls in the class that know how much Meredith likes things that sparkle or shine. So on the days they know they will see her, they wear shirts with sparkles. I thought that was just about the cutest thing ever. Here's a pic of Mer with one of her buddies and with her gym teacher.LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-29545923609088489152011-10-15T23:24:00.015-04:002011-10-17T20:15:41.222-04:00Blue Sky Event<img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://2.bp.blogspot.com/-n24ELnxsGCw/TppQFqeXF9I/AAAAAAAAAZY/bfo05Gus_Wc/s400/IMG_1460.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663927539603019730" /><a href="http://3.bp.blogspot.com/-M2kJoR-l9kc/TppQF36_mXI/AAAAAAAAAZk/FVcXj3Vj3uA/s1600/IMG_1467.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/-M2kJoR-l9kc/TppQF36_mXI/AAAAAAAAAZk/FVcXj3Vj3uA/s400/IMG_1467.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663927543212775794" /><span class="Apple-style-span" style="color: rgb(0, 0, 0); -webkit-text-decorations-in-effect: none; "></span></a><span class="Apple-style-span" style="color: rgb(0, 0, 0); -webkit-text-decorations-in-effect: none; "><br /><a href="http://3.bp.blogspot.com/-M2kJoR-l9kc/TppQF36_mXI/AAAAAAAAAZk/FVcXj3Vj3uA/s1600/IMG_1467.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"></a></span><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://4.bp.blogspot.com/-_C-pIyYO0ag/TpyuCEgpsLI/AAAAAAAAAZ8/OTquekExbdE/s400/BlueSky.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5664593781918904498" /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-_cqV1tfDx3g/TppQGccj5kI/AAAAAAAAAZw/KlrDJ65zEww/s400/IMG_1506.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663927553017243202" /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /><div><br /></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwjx_AeyHoCjB0vToo2lcIlmjslHzklannDhL9NrQO8IbgIWfaaBJN1W8t1xqHRbXrg0f5902Np-LbYRg4iGQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 0); -webkit-text-decorations-in-effect: none; "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(0, 0, 0); -webkit-text-decorations-in-effect: none; ">Today we attended our first official Rett Syndrome Event - the Blue Sky Event at Harvard Medical in Boston. Greg is in China for work but Meredith and I went and we brought </span>Grandma too! It was a great day and we had the opportunity to meet many other Massachusetts Rett families. Dr. Khwaja was there as well as several of the researchers working on finding a cure. Each of the children climbed the stairs to symbolize their strength and perseverance. After the kids climbed, Dr. Khwaja and the researchers climbed too. It was an amazing day. The second picture is Meredith and I with my marathon buddy Jeanne and her beautiful daughter Charlotte.</div><div><div><br /></div></div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com1tag:blogger.com,1999:blog-8946749431399096254.post-2624271855388730152011-10-14T23:11:00.007-04:002011-10-15T18:28:10.490-04:00Rett on The View<div>Again - this is Typical Rett (not Variant), but great exposure for Rett Syndrome in general. Meredith's kind of Rett is distinguished from this kind because she never had the period of normal development these parents describe and her mutation is to the FOXG1 gene, not MECP2. </div><div><br /></div><iframe src="http://player.vimeo.com/video/27673788?title=0&byline=0&portrait=0" width="400" height="300" frameborder="0" webkitallowfullscreen="" allowfullscreen=""></iframe><p><a href="http://vimeo.com/27673788">Rett Syndrome on The View - January 2011</a> from <a href="http://vimeo.com/rettsyndrome">RSRT</a> on <a href="http://vimeo.com/">Vimeo</a>.</p>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-61696119350696170922011-10-14T21:45:00.006-04:002011-10-14T22:04:39.957-04:00Great Video that explains the Rett Reversal in Mice<div>Kind of sciency, but if you are interested in hearing someone who knows what they are talking about explain the experiment, here it is! This explains the very exciting experiment that was done where Dr. Bird was able to reverse the sypmtoms of Rett Syndrome in mice. MECP2 is the gene linked to Typical Rett. But this science is still exciting for kids with a FOXG1 mutation (Atypical Rett) because the findings indicate that a similar approach could be taken with the FOXG1 gene.</div><p><iframe src="http://player.vimeo.com/video/27733917?title=0&byline=0&portrait=0" width="400" height="265" frameborder="0" webkitallowfullscreen="" allowfullscreen=""></iframe></p><p><a href="http://vimeo.com/27733917">Understanding the Rett Syndrome Reversal Experiment</a> from <a href="http://vimeo.com/rettsyndrome">RSRT</a> on <a href="http://vimeo.com/">Vimeo</a>.</p><p></p>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com0tag:blogger.com,1999:blog-8946749431399096254.post-13040911840224274852011-10-08T20:06:00.007-04:002011-10-08T20:43:16.474-04:00Test Driving a Gait Trainer!<a href="http://3.bp.blogspot.com/-y0H3gGT_o0Y/TpDokFFEU2I/AAAAAAAAAZQ/MZxSt-sjZsQ/s1600/IMG_1456.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/-y0H3gGT_o0Y/TpDokFFEU2I/AAAAAAAAAZQ/MZxSt-sjZsQ/s400/IMG_1456.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5661280438141080418" /></a><br /><a href="http://4.bp.blogspot.com/-cR41Ky4lKsE/TpDokPwhBnI/AAAAAAAAAZI/sgpoUtcIGqU/s1600/IMG_1452.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/-cR41Ky4lKsE/TpDokPwhBnI/AAAAAAAAAZI/sgpoUtcIGqU/s400/IMG_1452.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5661280441007670898" /></a><br />This week Meredith got to trial a gait trainer at Children's Hospital. It's kind of like a walker with lots of support. We ordered her one and it will take about 3 months to arrive - we are so excited! It's a Rifton Pacer like this one, but a newer looking model and a snazzy lime green color.<div>There is a seat and a snug support around her torso. The idea is to get her her legs to start making the walking motion. Hopefully with time, she'll learn to tool around in her little walker on her own. It was so nice to see her in the standing position and still be able to move her around her legs. Also, this is something we can use barefoot, which is just nice. No AFO's and sneakers - au natural : ) She seemed to like having her feet on the ground and overall was very happy being in it. She kept kicking her left leg out like a little kickstand and seemed to like putting her hand on the handle bar. We weren't sure a gait trainer would offer Meredith enough support, I pictured her being too floppy. But seeing her in this was really encouraging - think she might really take to this! She loves to move around, she just has no control over her movements. So this gives her the stability she needs while still allowing her to move. It was awesome and we can't wait for her's to arrive.</div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com2tag:blogger.com,1999:blog-8946749431399096254.post-74160684073679422011-09-12T18:10:00.004-04:002011-09-12T19:49:10.996-04:00Pix from School<a href="http://1.bp.blogspot.com/-8Z5hifGhGcI/Tm6EIoxaAPI/AAAAAAAAAZA/qoylSHAUzac/s1600/SchoolSwing.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 305px;" src="http://1.bp.blogspot.com/-8Z5hifGhGcI/Tm6EIoxaAPI/AAAAAAAAAZA/qoylSHAUzac/s400/SchoolSwing.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5651599866315014386" /></a><br /><a href="http://2.bp.blogspot.com/-Jr1KAtM2If4/Tm6EIsKjWMI/AAAAAAAAAY4/Z2OnVu640Bc/s1600/MerAtSchool.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 373px;" src="http://2.bp.blogspot.com/-Jr1KAtM2If4/Tm6EIsKjWMI/AAAAAAAAAY4/Z2OnVu640Bc/s400/MerAtSchool.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5651599867225790658" /></a><br />Uh oh. Looks as if Meredith has inherited her mother's relaxed approach to school. They sent home this note/photo today. The other shot is showing a neat swing adaptation that they use in many different configurations during physical therapy. <div><br /></div>LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com1tag:blogger.com,1999:blog-8946749431399096254.post-86451428633833867342011-08-24T15:02:00.019-04:002011-08-27T08:38:36.762-04:00We have a diagnosisAfter 3 solid years of searching for a diagnosis, last Friday, August 19th, genetic testing confirmed that Meredith has Variant Rett Syndrome due to a FOXG1 mutation. It's still settling in since we had pretty much come to terms with the idea that we would never get an answer. It's strange and surreal to think that the hunt is over, but we take great comfort in knowing what we are up against. Today we met with a Rett Syndrome pioneer, Dr. Khwaja, who is the Director of the Rett Clinic at Childrens' Hospital. He confirmed Meredith's diagnosis and told us he thinks in the coming years, it will become known as FOXG1 Syndrome, instead of Variant Rett. The FOXG1 gene was identified in 1994 and only linked to Variant Rett in 2008. Khwaja expects increased focus on FOXG1 as a result of the recent discovery and we hope this provides more information or even treatment for kids with this form of Variant Rett. To give you an idea of it's rarity, Meredith is only the third child Dr. Khwaja has ever diagnosed with a FOXG1 mutation.
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<br />With typical Rett Syndrome, kids have a period of normal development and then hit a point where they begin to regress. There are a few different kinds of Variant Rett, but with Congential Rett (meaning from birth) kids never have that period of normal development.
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<br />The FOXG1 gene tells the body how to make certain proteins important for brain development and growth and Meredith has a truncated gene. He said Meredith's exact mutation has never before been documented, but from the looks of it she falls into the "moderate to severe" presentation of the syndrome. He gave us a lot of information and the majority of it was actually good! Here are a few of the highlights:
<br />1. NO REGRESSION - woohoo!!!! Meredith should continue on her leisurly path of development and make small gains. She won't lose the skills she has acquired.
<br />2. This is a spontaneous defect that happened in development, so there is no need for Greg or I to be tested and no reason for us to think we passed this along to her.
<br />3. Around the age of 10, many kids see a decrease in seizure activity. In some kids, they go away completely.
<br />4. Walking/moving around is still on Meredith's wish list!! He said the biggest obstacle with FOXG1 kids is the ultra-low muscle tone. But with continued therapies, stander time (and he wants her using a gait trainer), she can make substantial gains in this area. Some kids do eventually learn to walk, but not until very late, age 8 or 9. We were given a script for 2 vitamins that can help with the growth and maintenance of muscle tissues to help with Mer's low tone: L-Carnitine and Ubiquinone. We are excited to get her going on these asap!
<br />5. Nearly all kids are non-verbal. Not great news, but there are so many other forms of communication we can focus on and of all the losses we have mourned with Meredith's development, for some reason this one falls to the bottom of the list. Plus, having a husband who jabbers enough jibberish in the household for 5 three years olds gives us our fill : )
<br />6. Meredith's life expectancy is about 40 years which we've been told should continue to be happy and healthy.
<br />7. He recommended getting another MRI to get a better look at Meredith's brain since her last one was done at 9 months when the brain is still mostly water. This could provide more clues on her overall development moving forward.
<br />8. There is a slight risk as kids get older of developing an irregular heart beat so we repeated an EKG to keep an eye on that. It's actually only documented in typical Rett, but we'll keep an eye on it as a matter of course. If it were to develop, it can be easily treated with medication.
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<br />There is amazing research being done right now on Rett and scientists have actually been able to reverse the symptoms in mice. We asked Khwaja if this is something we can be excited about for Meredith even though she has Variant Rett. He said they are working on creating a FOXG1 mouse now : ) We have high hopes for the future discoveries that will be made. Here is a link I found especially fascinating that explains the <a href="http://www.rettsyndrome.org/content/view/201/515/">mouse study.</a> Meredith was also asked to participate in a medical study - readily accepted with a squeak and a giggle - which will help promote additional advancements in the field.
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<br />This diagnosis and the appointment today has provided Greg and I much closure when it comes to this journey. We both agreed today that when we came home, we felt as if we had finished a perpetual Iron Man and we could finally sit down. We can move forward with our lives and most importantly continue to provide Meredith every opportunity to thrive, knowing that the gains she makes are hers to keep.
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<br />LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com7tag:blogger.com,1999:blog-8946749431399096254.post-39427957581749787142011-08-14T20:03:00.011-04:002011-08-15T16:54:46.492-04:00Soul Sisters<a href="http://1.bp.blogspot.com/-yIeGBVuerpc/TkhpEthgEzI/AAAAAAAAARM/k5p50n6o0dc/s1600/IMG_1395.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-yIeGBVuerpc/TkhpEthgEzI/AAAAAAAAARM/k5p50n6o0dc/s400/IMG_1395.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5640874062942049074" /></a>
<br /><a href="http://1.bp.blogspot.com/-AfWzuRFMAyk/TkhpEork6cI/AAAAAAAAARE/DBBidqsxfw0/s1600/IMG_1391.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-AfWzuRFMAyk/TkhpEork6cI/AAAAAAAAARE/DBBidqsxfw0/s400/IMG_1391.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5640874061642131906" /></a>
<br /><a href="http://3.bp.blogspot.com/-wZnkp9CuQ-I/TkhpEfqjcjI/AAAAAAAAAQ8/Kezvg5YnC6s/s1600/pony.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/-wZnkp9CuQ-I/TkhpEfqjcjI/AAAAAAAAAQ8/Kezvg5YnC6s/s400/pony.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5640874059221922354" /></a>
<br />Almost exactly a year ago, I was lucky enough to be found online by a mom who had seen Meredith's blog and who's daughter shared many of the same symptoms. We started trading emails and phone calls and quickly learned that our girls had a LOT in common : ) Given Meredith's unique assortment of symptoms, this was really something special. Amy is the first mom I connected with on this journey who's child was going through pretty much the exact same unique experience as ours. Knowing Amy and Mark were out there somewhere was extremely comforting to us - there was another couple somewhere in the world who did understand! As I learned more about their daughter Olivia, I just could not believe all the similarities. We don't exactly live nearby, but close enough so that with a little planning and a road trip on both sides, we thought it would be possible to actually meet. Well we met last Friday in Lancaster, PA and it was truly an amazing experience. To sit and talk with another couple who is going through the exact same complicated journey as we are was just mind blowing and extremely therapeutic. Greg loved the opportunity to talk with another Dad who could relate and both Greg and I truly feel we made some new friends this weekend. We toured Amish Country and spent a few hours at Kitchen Kettle Village in Intercourse, PA. Meredith had her first pony ride care of Chloe the speedy pony. We ate some delicious PA soft pretzels and had a lovely dinner out at the Stockyard Inn. We enjoyed so much every second of our visit with Amy, Mark, Olivia and little sis Emily. Thank you guys for everything...LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com2tag:blogger.com,1999:blog-8946749431399096254.post-67980568228916343462011-08-02T10:07:00.003-04:002011-08-02T10:15:31.784-04:00High Low Base arrives<a href="http://1.bp.blogspot.com/-V3XuXLAGX7M/TjgF3XJZ4ZI/AAAAAAAAAQ0/lwQMW-M3_PY/s1600/IMG_1355.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/-V3XuXLAGX7M/TjgF3XJZ4ZI/AAAAAAAAAQ0/lwQMW-M3_PY/s400/IMG_1355.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5636261382318580114" /></a><br />We are loving Meredith's new wheelchair, the Stingray. She gets buckled in in the morning and wheeled right onto the bus where they lock down the wheels just like a wheelchair. It's crash-tested so it acts as a carseat and wheelchair in one. We also ordered a base so we can pop the chair piece off the wheelchair and snap it onto this base for indoor use. This way we can raise and lower her to the appropriate height for all kinds of activities. It's been very handy and is really easy to use. It's great to have another seating option for her since she's just about outgrown the other infant-style chairs we have. Now we have this and the one you can see in the background, her pink chair made by Perkins.LauraLewhttp://www.blogger.com/profile/13975526339999145117noreply@blogger.com1