tag:blogger.com,1999:blog-15402099032109688462024-03-18T21:33:50.014-07:00A Day in the Life of an SMA MamaA day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-1540209903210968846.post-75480933368850596342010-03-25T13:39:00.000-07:002010-03-25T13:50:30.174-07:00Puree<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVOj1N10J77bc67cqnw3RIX-gU4MuQfi3q4k8iGCngzapBeOLBLC6a6zcFdRSwyCK5QaOAdcN2kcS2z8VdDh0HX7UoSVKNRRM9p1uGLFZ-CETF6Of9oRg-rgj0bLCBm1VJk3IVWdSWEKw/s1600/weaning-pea-puree-green-in-ice-cube-tray-ready-for-freezing-closeup-1-DHD.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 256px; height: 192px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVOj1N10J77bc67cqnw3RIX-gU4MuQfi3q4k8iGCngzapBeOLBLC6a6zcFdRSwyCK5QaOAdcN2kcS2z8VdDh0HX7UoSVKNRRM9p1uGLFZ-CETF6Of9oRg-rgj0bLCBm1VJk3IVWdSWEKw/s400/weaning-pea-puree-green-in-ice-cube-tray-ready-for-freezing-closeup-1-DHD.jpg" alt="" id="BLOGGER_PHOTO_ID_5452674938364493586" border="0" /></a><br />As I have said before, Evan is not a great eater and he is even worse when he is dealing with constipation issues (a result of his Spinal Muscular Atrophy). To get more bang for my buck I add veggie puree's into <span style="font-style: italic;">everything!!</span> Whether it is food I am making from scratch or my lazy meals of pancake mix, spaghettio's, or Mac n' Cheese there is pureed veggies in everything. My family doesn't even know they are getting veggies in every meal they eat! I still offer veggies on the side, but this way I'm not stressed if those veggies are ignored.A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-32232209842935046212010-03-22T15:47:00.000-07:002010-03-22T21:13:50.105-07:00Drum setI do a lot of our "therapy toy" shopping at our local consignment store. We don't want to be spending a fortune on toys just in case Evan isn't able to use them. I scower the shelves and can usually find some pretty good toys. <br /><br />This Kawasaki drum set has been wonderful! He is able to push all of the buttons, and slide the bars by himself. In addition to this he "whacks" the various drums to add to the beat. He learns music rhythm and beats and exercises his muscles, all at the same time. It is a great toy!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIII5SZuF1-uX1mYoVw9PT11Mhzzoo8PFCNkFbkkUc1em_Dt9fNL0r3CGJZu27n6QPs7kArjUmAohDaRnBBewD-evuitNTsvlai5YQ4s9Z_HuiowpvqjoGOnsSwqr7a_YhIa3fvmdB7oM/s1600-h/P1030052.JPG"><img id="BLOGGER_PHOTO_ID_5451595011507375890" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIII5SZuF1-uX1mYoVw9PT11Mhzzoo8PFCNkFbkkUc1em_Dt9fNL0r3CGJZu27n6QPs7kArjUmAohDaRnBBewD-evuitNTsvlai5YQ4s9Z_HuiowpvqjoGOnsSwqr7a_YhIa3fvmdB7oM/s400/P1030052.JPG" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw2FXc1sqTSIuCFVAd2iVN0n_yDNAfze14dcheZZrxIx1eqGUmoZ4ji6PQ6K66smPZA7wjF7BtzJxfqUj4Vw6rofBDe4HUJV5qVuDRVvRjXdlZA1YCT0bdKq8zB-UAiHe2UesV4VGRXIE/s1600-h/P1030053.JPG"><img id="BLOGGER_PHOTO_ID_5451595226082938802" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw2FXc1sqTSIuCFVAd2iVN0n_yDNAfze14dcheZZrxIx1eqGUmoZ4ji6PQ6K66smPZA7wjF7BtzJxfqUj4Vw6rofBDe4HUJV5qVuDRVvRjXdlZA1YCT0bdKq8zB-UAiHe2UesV4VGRXIE/s400/P1030053.JPG" border="0" /></a>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-64677822116777982092010-03-22T15:45:00.000-07:002010-03-22T21:00:27.550-07:00Sibling Love<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqZ8vrrf0lKGpjB69MKqm83sQO6Mn10QCaxKYoXYibtRRhPCglcx49YsKSIbd7Uj79P5MCyFMK9N69dEpfr8q3qve51QJ4yLACawP83JT0vvRLVlc3ZE0_xG_FkrU015hZBAh0uvA97Zk/s1600-h/P1020994.JPG"><img id="BLOGGER_PHOTO_ID_5451593446411640066" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqZ8vrrf0lKGpjB69MKqm83sQO6Mn10QCaxKYoXYibtRRhPCglcx49YsKSIbd7Uj79P5MCyFMK9N69dEpfr8q3qve51QJ4yLACawP83JT0vvRLVlc3ZE0_xG_FkrU015hZBAh0uvA97Zk/s400/P1020994.JPG" border="0" /></a><br />Landon is such a big boy and already wants to help take care of his big brother Evan. He kept pushing him around the store ... it was too cute! These two boys already have such a special and close bond that is only going to grow.A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-61720726731988929902010-03-22T15:44:00.000-07:002010-03-22T20:54:19.738-07:00sand box<div align="center"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3ymiPdmMU9ArO4AVNgBOzIrI66Ov_5g33Mmd2pAsjGDDyrY_J5N1akPRtA3jxo2QWk9uXLaqoiJVzyWpzgZoQ6wljthSCsfKLB1cTC3Jp6lxMzkYUCegLGD1RZ-iatg7dUkhzOmaIa3s/s1600-h/P1020924.JPG"><img id="BLOGGER_PHOTO_ID_5451593182634669010" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3ymiPdmMU9ArO4AVNgBOzIrI66Ov_5g33Mmd2pAsjGDDyrY_J5N1akPRtA3jxo2QWk9uXLaqoiJVzyWpzgZoQ6wljthSCsfKLB1cTC3Jp6lxMzkYUCegLGD1RZ-iatg7dUkhzOmaIa3s/s400/P1020924.JPG" border="0" /></a><br />For warm weather the sand box outside is wonderful. He digs and lifts and fills and pours. Great therapy, lots of fun! </div>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-73532304367735639172010-03-22T15:43:00.000-07:002010-03-22T20:48:01.128-07:00cough assist<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja85-Tr2c6HSODTz5abVivObqRDj109tdJOTLizsXTTwBHTvZfp3C0jX1-a0ylRxsD-RCedG9uRboUVvzw7nPe66EOvaNQ17jg6itXVYOTjuw23I3EZRTXes0CnzJ1bMa6td-ZHbGcDq8/s1600-h/P1020851.JPG"><img id="BLOGGER_PHOTO_ID_5451592823065319970" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja85-Tr2c6HSODTz5abVivObqRDj109tdJOTLizsXTTwBHTvZfp3C0jX1-a0ylRxsD-RCedG9uRboUVvzw7nPe66EOvaNQ17jg6itXVYOTjuw23I3EZRTXes0CnzJ1bMa6td-ZHbGcDq8/s400/P1020851.JPG" border="0" /></a> We had been told on numerous occasions that using a cough assist machine on a regular basis would be beneficial to Evan's health. It is an amazing machine and fortunately for us Evan thinks it is "funny" to use. <br /><br />Something that we have found to work well when he doesn't want to use it is for us (the parents) to use it. Along with the pediatric mask the hospital gave us an adult mask. Evan and I take turns using it and I know that that alone keeps the machine "fun" as opposed to a task he has to do.A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-32690698722431321472010-03-22T15:41:00.000-07:002010-03-22T20:40:44.528-07:00Bath timeSMA kids are very "tippy" and as a mother I am always a little paranoid at bath time. I got this really cute tub liner at IKEA. It was quite inexpensive and helps to keep his cute little behind from slippin' and slidin'.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaNqVd2zKwLxkUItE1nhVv0b3TqYTnH_gMZI-W8rNZbnpnpvBam28Ath490IfiMZom71uq20a6I_bBZWux293bf89WC4N_4HkoN_dImh8Np7Y7WurgKhvpXD24WVTyELOET-jVQ9Lh5UQ/s1600-h/P1020701.JPG"><img id="BLOGGER_PHOTO_ID_5451592369043133730" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaNqVd2zKwLxkUItE1nhVv0b3TqYTnH_gMZI-W8rNZbnpnpvBam28Ath490IfiMZom71uq20a6I_bBZWux293bf89WC4N_4HkoN_dImh8Np7Y7WurgKhvpXD24WVTyELOET-jVQ9Lh5UQ/s400/P1020701.JPG" border="0" /></a>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-18233963716186232542010-03-22T15:40:00.000-07:002010-03-22T20:35:56.885-07:00nerf gun<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTsfB1bXMBrJXgb177egbuF5coKqE803tvNTxkATx3tQ__SwfFPkSJTxykzHRHSN0S71r3u5p5hb7xbXCXCaoPgjEJ9U-wJciaASXbpbMJFyXDTxqrG0X7aS_gGlpJcd-XBvB0E1PcmSA/s1600-h/P1020408.JPG"><img id="BLOGGER_PHOTO_ID_5451592022682562066" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 300px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTsfB1bXMBrJXgb177egbuF5coKqE803tvNTxkATx3tQ__SwfFPkSJTxykzHRHSN0S71r3u5p5hb7xbXCXCaoPgjEJ9U-wJciaASXbpbMJFyXDTxqrG0X7aS_gGlpJcd-XBvB0E1PcmSA/s400/P1020408.JPG" border="0" /></a> This nerf gun is sooo fun!!! It is an automatic nerf machine gun and the trigger is sensitive enough for Evan to use on his own. Someone has to help him aim, but this toy is ALOT of fun :-)<br /><div align="center">(that bright light in the middle of the picture is a bullet coming right at me) <br /></div>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-6693909337899605722010-03-22T15:37:00.000-07:002010-03-22T20:30:13.484-07:00Bubbles<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPEwduNNWXoDHeQ58mZypI-izj9oqT7mHGS6CUPU9pF0mujQLABYQjpZzyC3fuUYmaucHDFrQaPoXJh1THEKWE9AEVdnKYerAuUvxB7kquguRgL177AH7cGiPnSKwB5q5boibmt5C7UAA/s1600-h/P1020837.jpg"><img id="BLOGGER_PHOTO_ID_5451591248135508466" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPEwduNNWXoDHeQ58mZypI-izj9oqT7mHGS6CUPU9pF0mujQLABYQjpZzyC3fuUYmaucHDFrQaPoXJh1THEKWE9AEVdnKYerAuUvxB7kquguRgL177AH7cGiPnSKwB5q5boibmt5C7UAA/s400/P1020837.jpg" border="0" /></a> Bubbles are a favorite for most toddlers, but I have noticed some wonderful therapy results with Evan. My friend sent Evan this bubble machine for Evan's birthday last year (or Christmas ... I can't remember) and he loves it. The button is just easy enough for him to push, so he can control when the bubbles are blowing or not. The other great therapy is that he is constantly reaching his arms up to get the bubbles. When we are playing with bubbles he doesn't feel like we are doing therapy :-)<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK750APbmAOdkgsRus4ZFI1rf5WQBTvU1T_7xXuoA3VzQ5fmwQi8zuQQWmFGuVc1V-KftWlcMl71kK2AzeExnoWqoure64JzmlOr99Cqf3VVj0T450MC7EkqSPKI6Fxwfm8-Com41q7CA/s1600-h/P1020357.jpg"><img id="BLOGGER_PHOTO_ID_5451591240237366242" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK750APbmAOdkgsRus4ZFI1rf5WQBTvU1T_7xXuoA3VzQ5fmwQi8zuQQWmFGuVc1V-KftWlcMl71kK2AzeExnoWqoure64JzmlOr99Cqf3VVj0T450MC7EkqSPKI6Fxwfm8-Com41q7CA/s400/P1020357.jpg" border="0" /></a>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-68754762356067091482010-03-22T14:41:00.000-07:002010-03-22T15:25:03.836-07:00soccer<img id="BLOGGER_PHOTO_ID_5451578041154989874" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 266px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSzc5MbgvRQk1HR-Xp6CHN5rUZhKq6loQ441vyrnqyMKKSrIsMeXR63JXLkAY5Ax7JnpVOZRgJ_Drc5WeBSG-7tgGdn6efiuJZWtDUlS2qsPHot7yP8t9ZtMpOjhi-QaZAPEL3bKSafUw/s400/DSC01911.jpg" border="0" /><br />This discovery came on quite by accident! I had bought this Chinese lantern at Ikea for $5.00 and didn't end up using it in my decorating. It was just sitting on our basement floor and Evan calls to me. When I look up I see him holding it up in the air with his arm. I was amazed to say the least! This Chinese lantern is light enough that he can lift it, and big enough that it still exercises his muscles. <br /><br />Another added benefit of this glorious discovery?? SOCCER!! We have purchased beach balls and soccer balls, and basketballs for him to push around in his stander, but they all get stuck and then Evan can't move anymore. Because this is paper and wire it doesn't get stuck!! There are different sizes and I imagine all would work. Evan loves to "kick" this ball around and we all chase it!<br /><img id="BLOGGER_PHOTO_ID_5451578563891617378" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 266px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqgdel9KIzp8lDji18LAjpA1InyFtdBhVy4mP_7lKbqfrO06GUYyfJ3rfzihfKaLAO1Sth6J9owWl6iQtYOJ-v5ogwF0OSgMQN-VcivtSW-YYXs5NHePXFJXvPb1n-HmRKytqB8_McxlI/s400/DSC01925.jpg" border="0" /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2Dsw2oFqzeja0dCQ1qGS2A8sGMpXHqyaYEOY_M69MQWrhiPD5bvCBQSouyBYKYUShw5zg81JtGlY4YVPNPAYTllQQETh9_4rdHUu94cnTv359yp2u70Y2ROBEThoeAuCtcNBBdFcajAk/s1600-h/DSC01921.JPG"><img id="BLOGGER_PHOTO_ID_5451578549981987666" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 266px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2Dsw2oFqzeja0dCQ1qGS2A8sGMpXHqyaYEOY_M69MQWrhiPD5bvCBQSouyBYKYUShw5zg81JtGlY4YVPNPAYTllQQETh9_4rdHUu94cnTv359yp2u70Y2ROBEThoeAuCtcNBBdFcajAk/s400/DSC01921.JPG" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDCM0S_FxaE0wtoYREzXFpPP4wJbcgFr-itLDekg1S360T2f9Vm_k2QysJzmWTG64OyeTuXMnwHwuyi8PDN3mE53BjziTiBYA1hod-LBxLu5LU1obZQ_KH1WxEgfhV0yn7deC1npfj3sk/s1600-h/DSC01914.JPG"><img id="BLOGGER_PHOTO_ID_5451578051023863490" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: pointer; HEIGHT: 266px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDCM0S_FxaE0wtoYREzXFpPP4wJbcgFr-itLDekg1S360T2f9Vm_k2QysJzmWTG64OyeTuXMnwHwuyi8PDN3mE53BjziTiBYA1hod-LBxLu5LU1obZQ_KH1WxEgfhV0yn7deC1npfj3sk/s400/DSC01914.JPG" border="0" /></a>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-29577364572993616662010-03-22T14:24:00.000-07:002010-03-22T15:31:29.607-07:00eatingI naturally a naturalist. I am not an extremist, but I am very aware of what goes in and out of my families bodies.<br /><br /><br /><br />Evan is not a great eater. Without getting into too much <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">unnecessary</span> details the fact that Evan is naturally small, has <span class="blsp-spelling-error" id="SPELLING_ERROR_1">SMA</span>, and is a terrible eater always worries doctors. For a while I would seriously stress out about it, but I have gotten to the point that I understand the way HE grows (I have been watching his growth chart long enough to piece it together), and I am not going to stress about it anymore. I am aware, I will continue to monitor what goes in and what is coming out but I have come to the parental conclusion that if Evan is mostly eating healthy food items I am not going to be overly concerned with a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">specialized</span> diet just for him. That is my opinion for now.A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-85772963310340619602009-11-12T20:55:00.000-08:002009-11-12T23:31:03.521-08:00play time ideaWe live in a very cold climate and I would have a hard time figuring out what I could do for playtime during the winter with a child who can't move. Really there is only so much TV that I want him to watch and only so many video games as well. We have our toys, but they can get old too. I came up with a way to totally rig up our basement so that Evan can motor around in his stander and have plenty to entertain him. (We are big into exercise=play) I will do a highlight of the whole basement when we manage to get it organized. In the meantime I wanted to share my idea of "the rice box". <br /><br />Evan really enjoys the sand box that we have outside. In many ways it is really good <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">exercise</span> for him. We like to "cook" together and he has to muscle the sand around in his different size cups. I had the idea of making an indoor sand box and I do have to say it has been a major hit around our house. I bought a cheap blow up pool and filled it with rice. I chose the blow up pool because I know if Evan falls over he isn't going to hurt himself. I chose rice because it was cheaper than beans and easier to clean up than sand. <br /><br />It has been so much fun since we set it up. The only thing that I recommend is for owners of cats. Remember to cover it up when it isn't being used, so it doesn't look like a big beautiful kitty litter box :-) <br /> <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgROenp-ov_DbM_9fq2nK-IbhW7N5Nt2N4oKCs_LIILxvPScD4_nvTeHGxk5-psmA3iQAnVP017mdmj2hV70l0T4GYgI1DF1b57iCEe7Lsx-n-eEc2s-a9hMw4YIEa12B9JxyVyVJCZ6_I/s1600-h/DSC08351.JPG"><img id="BLOGGER_PHOTO_ID_5403448316158634162" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgROenp-ov_DbM_9fq2nK-IbhW7N5Nt2N4oKCs_LIILxvPScD4_nvTeHGxk5-psmA3iQAnVP017mdmj2hV70l0T4GYgI1DF1b57iCEe7Lsx-n-eEc2s-a9hMw4YIEa12B9JxyVyVJCZ6_I/s400/DSC08351.JPG" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLokwfaXfuljrz72TcNB3z4W7UKhpP0mVlQikuRPV5c0uuAG_-Sd2L0dGnT5he6a5C_ATVBG-hqA0GA5STQnZP5PtZ-bajwSv9s5K2uqqd09SlPRwkfGvX3TdLZ42r9qb3XBB8Vdwn1gs/s1600-h/DSC08345.JPG"><img id="BLOGGER_PHOTO_ID_5403448307660088514" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLokwfaXfuljrz72TcNB3z4W7UKhpP0mVlQikuRPV5c0uuAG_-Sd2L0dGnT5he6a5C_ATVBG-hqA0GA5STQnZP5PtZ-bajwSv9s5K2uqqd09SlPRwkfGvX3TdLZ42r9qb3XBB8Vdwn1gs/s400/DSC08345.JPG" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG532Bf2TWt9NVvOp_flmjUJeuEFVgG15QEUPsfLHxR9vafpXcGnLxMUJ7y4Y1ma6X0itnCqOblitq0-XOOfVI8CcIAQ-Vge-NgW6P3YlO_P6P-R7cjMSQ4LeFOHxuapJx4a_HC6GHD88/s1600-h/DSC08338.JPG"><img id="BLOGGER_PHOTO_ID_5403448299615782498" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG532Bf2TWt9NVvOp_flmjUJeuEFVgG15QEUPsfLHxR9vafpXcGnLxMUJ7y4Y1ma6X0itnCqOblitq0-XOOfVI8CcIAQ-Vge-NgW6P3YlO_P6P-R7cjMSQ4LeFOHxuapJx4a_HC6GHD88/s400/DSC08338.JPG" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAevL3Mglm7qnMUqavZc2egLZLIXvXMuRpzFI3bArC8cWY4ahzm9Qwp5Xe-v_6Sc_WyolZzEphn_gTohGeCEMwV0iYu8hpOKctZ_S8OPEeoCn61AZFhmiGP10y7rXmRqUb87tcsOgf-Ug/s1600-h/DSC08349.JPG"><img id="BLOGGER_PHOTO_ID_5403448326086823106" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 300px; CURSOR: pointer; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAevL3Mglm7qnMUqavZc2egLZLIXvXMuRpzFI3bArC8cWY4ahzm9Qwp5Xe-v_6Sc_WyolZzEphn_gTohGeCEMwV0iYu8hpOKctZ_S8OPEeoCn61AZFhmiGP10y7rXmRqUb87tcsOgf-Ug/s400/DSC08349.JPG" border="0" /></a>A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-14390832309940329322009-10-14T19:14:00.001-07:002009-10-14T20:56:02.097-07:00I know I don't lead a "normal" life, nobody who lives with a handicap does. I have never actually considered myself a "normal" girl. I was just at a function with a large group of women in the same stage of life as me. I was sitting alone most of the time and I realized that I am probably not always great company to be around. I really can't relate to their lives. The conversations mostly revolve around their children and pregnancy. The life I lead with my children is GREAT but it is <em>very </em>different than what most people experience as normal. I cannot contribute to most of the issues that they face. Maybe I will with Landon, but not Evan. Having a handicap child can be quite isolating. This is not the first time I have felt this isolation, and I know it won't be the last time either.<br /><br /><br /><br />On the flip side, I took Evan to a "Music Makers" class today. He loved it and reveled in singing the songs and doing the actions. We sang, ran, danced, and jumped around together. The interaction with other kids his age is so beneficial and I love seeing him having "conversations" with his peers. Studies have shown that children with SMA are very bright. Evan proves this to me day in and day out. Often times he was the only one actually singing (or trying to sing) the songs in the class. At only 2 years old that is amazing. It is a major blessing to be able to communicate with my child on a fairly intelligent level. I am biased, but I do have to say that Evan was THE cutest kid in the class.A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com1tag:blogger.com,1999:blog-1540209903210968846.post-81367985529838124442009-10-13T08:02:00.000-07:002009-10-14T20:55:24.821-07:00Bee PollenEvan gets sick quite frequently, especially during the winter time. Because his muscles are weak he cannot cough efficiently, so he stays sick for a long time. Last winter he was sick every other month and would stay sick for 3-4 weeks at a time, needing antibiotics to recover. We have been fortunate to have stayed out of the hospital ... hopefully it will stay that way.<br /><br /><br /><br />We made a HUGE discovery this weekend!!! Bee Pollen!! It is a natural antibiotic. The bees coat their hive with it to protect themselves from illness. You can get the bee pollen in a solid or a liquid drop form, which is what we got for Evan.<br /><br /><br /><br />Evan has been sick for about 2 weeks and after 2 days of bee pollen he was phlegm free! We can't believe it!! This is the first time in a year and a half that he has recovered on his own, sans medication. YAY!!!A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-37574763273963058622009-10-12T13:32:00.001-07:002009-10-13T08:05:07.260-07:00Our lives changed in an instantCome November 2008 we hadn't made any progress with an explanation of what was happening with our son. What had happened was a continued regression of Evan's physical skills. He was crawling less, and he had a difficult time sitting himself up. Between this, and the move to a new country, with no job, I fell into something that I now know was a pretty deep depression. My dear, sweet, wonderful husband could tell that I was struggling and sent me to Florida for 2 weeks to be with my friends. We decided that while we were there we would try and do as much testing as possible through Evan's former pediatrician. I contacted her before we arrived and she so graciously agreed to help us.<br /><br />We were there for 2 full weeks and did soo much testing. My friends drove me everywhere and even stayed with me through all kinds of procedures. They served as a second set of ears to ask questions that I hadn't thought of. They even helped me interpret a doctor with a VERY heavy accent. They served as shoulders to cry on and the ears that I needed to vent to. They gave me the hands that I needed to hold.<br /><br />One of our appointments was with a neurologist. He wrote down a list of 6 diseases, in order of severity, that he thought could be affecting our little guy. The interesting thing is that he made a very strong point to say that the 6th disease (SMA) was the least likely. I called my husband and together we started to do our own research, based on the list, of what might be going on with our son.<br /><br />The second we read through the "official" tell tales of Spinal Muscular Atrophy we both KNEW that was what it was. Evan had all of the signs of Type 2 SMA, and we had a VERY strong feeling in our hearts that told us that is indeed what he had. My heart sunk!!!! I called his pediatrician in tears and begged that we jump right to the DNA testing for SMA. She tried to assure me that it did no good to jump to conclusions, but I KNEW!! At this point we only had a couple of days left, but she worked her magic and got us in for the testing. We did this blood test the night before we left to come back home to Daddy.<br /><br />It was Thanksgiving during that trip and I remember talking to my friend, Lacy, about how I was feeling. We were together on Thanksgiving Day and I was watching Evan watch all of the kids literally running around the yard. He looked so sad! I just started to cry on her shoulder because I wanted so badly for Evan to have the same experience that most kids have. I told her that I felt like I could handle anything, I just needed to know <span style="FONT-STYLE: italic">what</span> I was handling. BUT I really didn't <span style="FONT-STYLE: italic">want</span> to handle this. I WANTED Evan to be able to enjoy movement like other children.<br /><br />God Bless my friends who were an incredible support while I was going through a literal hell. God Bless the doctors who did so much for our son and eventually led us to a diagnosis, so we could move on with our lives.<br /><br />Evan and I returned to Canada and painstakingly waited the 2 weeks for the dreaded phone call. I knew in my heart what I was going to hear, but I desperately hoped (harder than I have ever hoped for anything) that I was wrong. <span style="font-size:130%;">I wasn't wrong.</span> On December 6, 2008 I was driving in the car when a phone call from Florida came informing me that my son, Evan, indeed had Spinal Muscular Atrophy Type 2. In an instant our lives changed FOREVER!A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0tag:blogger.com,1999:blog-1540209903210968846.post-83218591185470420912009-10-10T22:32:00.000-07:002009-10-13T08:04:10.716-07:00The beginning was hard!How do I begin??<br /><br />10 months ago our son, Evan, was diagnosed with Spinal Muscular Atrophy type 2, but our story begins long before that.<br /><br />As a baby Evan was always did what he was "supposed" to do when he was "supposed" to be doing it. He held up his head fairly early. He rolled over early. We didn't notice anything out of the ordinary until June 2008. Our family had a HUGE move coming up and at 11 months old Evan stopped bearing weight on his legs completely. We took him to his pediatrician and began some Physical Therapy thinking it was probably just stress from the house full of boxes. We were only able to get in a couple of sessions before we made our big move to Canada!<br /><br />Once we were in Canada things only got worse for our angel. With the socialized health care it was next to impossible to find a doctor and we weren't getting anywhere with the walk-in clinics. We eventually got referred to an Early Intervention Program and all they ever told me was that there was "nothing wrong", Evan was just "a lazy kid", "don't stress out mom, you'll only make it worse!" BUT deep down I knew it was something more ... I KNEW it was something MUCH MORE. Truth be told this was a very dark time in my life. I was not adjusting well to the new move, and I was sooo concerned, worried, and scared for my child. There just aren't words to explain that feeling of being lost. I knew my child needed help and I didn't know how to help him.<br /><div align="center">***********************************************************************</div>Every time we go to the seating clinic, or have an orthotics appointment at the hospital we actually pass the office of the woman we worked with during that time. She stopped us in the hallway one time and tried to place where she knew me from. I have to admit that sometimes I am still a little bitter about their complete lack of help. Here they are trained to spot the <em>rarities, </em>trained to have a keen eye (and Evan had all the signs) and they still missed it. In fact, they had me do things to him (therapy) that for an SMA child are TORTURE!!! I still tear up when I think about it, now knowing what I know.A day in the life of an SMA mama:http://www.blogger.com/profile/14756992635831844735noreply@blogger.com0