tag:blogger.com,1999:blog-20136963829835201982024-02-19T17:27:25.277-08:00Amazing AmeliaDebbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.comBlogger149125tag:blogger.com,1999:blog-2013696382983520198.post-25682934808739331462019-01-25T10:29:00.000-08:002019-01-25T10:29:20.092-08:00Amazing Amelia is Officially a Teenager<div class="separator" style="clear: both; text-align: center;">
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Happy Birthday Amelia! Yesterday Amelia turned 13. Whew, that was fast!!! Amelia may not be the typical teenager but she is excellent at ignoring me, eye rolling and yelling at everyone when we interrrupt her TV watching. She loves playing around on the IPad, she is part of an incredible weekly adaptive dance troup and as is every teenagers right, she has been less cooperative in almost everything we try to do with her (walking, sitting, standing, respiratory therapy, etc). Sometimes we chalk it up to her being a young woman. Other times it seems more neurological and her lack of ability to coordinate her movements. </div>
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Amelia is a wonder. She has taught us so much about enjoying life and overcoming struggles. With Amelia we must all live moment to moment. Day by day. Nothing is taken for granted because everything about Amelia’s life can change instantly. Her health, her nursng care, her therapists, her body and her needs being met. The world is different for her in that her communication with us has not developed easily. We know when she’s happy and sad by her sounds. With all the programs and devices out there, Amelia hasn’t been terribly motivated to speak to to us and therefore, that piece is still a challenge for us. </div>
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However, all that said....Amelia is having her Bat Mitzvah in June! We are beyond excited!!! We’ve been working closely with one of Amelia’s former teachers. She is absolutely committed to helping us make this happen. Actually, we are surrounded by an incredible village who are paving the road with us for this extraordinary event. From her teacher asking OT’s and Speech therapists for their input (and them coming up with stellar ideas), to our temple who just updated the Bimah in the sanctuary to be wheelchair accessible and the multiple meetings we’ve had with our Rabbi and Cantor to tailor the service exactly to Amelia to set her up for wonderful success, to all our family — especially her little sister, Lucy and my nieces and nephews who have stepped up to say they want to be her “voice” for her Bat Mitzvah. So many moving parts here to make her day a spectacular success. </div>
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When your child is born with special needs, you learn to let go of milestones and expectations. It’s the only way to survive as a parent. Well, I now have a lovely vision of Amelia’s (near) future. A beautiful, sunny day in June where Amelia will be surrounded by the love of her village and participate in the tradition of becoming a Bat Mitzvah. It is rite of passage for every young Jewish person. I am so grateful that Amelia will have the opportunity to stand before us and create that milestone for herself.</div>
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Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com0tag:blogger.com,1999:blog-2013696382983520198.post-64653940153547903302012-11-14T23:23:00.000-08:002012-11-15T07:14:57.684-08:00Big Changes. Big Year.<div class="separator" style="clear: both; text-align: center;">
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So the first thing I need to do is give a huge Amelia update! It appears that she has had some kind of cognitive growth spurt in the last couple weeks. I don't know if this is due to the growing necessity to assert herself before her little sister steals all her thunder or what...but something big is happening for her and it is so exciting. Amelia has been more social in the past week than she has been her whole life. <br />
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Usually hanging in her room, particularly once we put the TV on for her, is all she wants to do. Amelia will just play for hours in there with or without anyone (she always has either us or a nurse with her -- but she is content to do her own thing, you know?). In the last several days we've had different visitors, cousins and my parents. Amelia has started to complain when we're in the other room playing with Lucy. I have always dreamed of Amelia hanging out with us in the living room wanting to play but every time I've tried it she starts to cry or belly's into the den wanting the big TV or any variation thereof. But in the last couple days...she WANTS to be with us. Playing in the big blue toy box in the living room and hanging with us. It's astounding!!!!<br />
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And not only that -- Amelia has begun to do the most amazing thing physically. She reaches up for me and it looks like she wants to give me a hug, but what she really wants is to use me as leverage to stand up. She puts her hands on my shoulders, gets her feet flat on the floor and pushes her tush in the air and then I give her hands support so she can push her upper body upright. It's incredible and she figured it out on her own. Now that I know what she wants to do, I can really help her. And once Amelia's up, she wants to walk around, maybe go outside and sit in a comfy chair...I mean, isn't that what we all do;)<br />
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And let's not forget the newest and biggest change in our lives...Lucy. I can't believe it but our little girl is turning one tomorrow. She has done everything she's supposed to do on the early side of when she was supposed to do it! I was able to read "Babycenter" emails each week and not cry. Watching Lucy eat will never get old for me -- I could watch her do it all day! Seeing her roll over, sit up, then dance on her tummy like a beached seal until she figured out how to crawl, stand up, cruise, walk and now almost running! She and I giggle endlessly and come up with new and nonsensical words. I have been able to experience the endless joys that come with raising a typical child. And I am so grateful! I will owe that to Lucy for the rest of my life.<br />
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I've also felt the deep sorrow that comes with the knowledge that Amelia and I were both cheated of so many wonderful experiences -- but comforted by all the special moments and the bond that I know only Amelia and I will ever have. I am the person today because of all the gifts Amelia has taught me. <br />
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<br />Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com4tag:blogger.com,1999:blog-2013696382983520198.post-41777911645519975732012-03-30T22:18:00.001-07:002012-03-30T22:21:02.143-07:00Soooooooo Typical!I've attempted to sit and update for some time now. I've been slightly busy. So much to tell you!<br />
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Well, first and foremost...Amelia became a big sister on November 15th, 2011. Amelia was not terribly thrilled about the whole thing. For one thing, Mom was gone for 5 days, when I came home -- I wasn't a whole lot of fun (tired and recovering from the c-section) AND I brought with me this little screaming, crying and attention grabbing critter that we all keep oohing and ahhing over. Seriously?<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZCUohqSRsZOlw0LnPbK4MLwch_luNs7j1u640yitzhcNa2NU5-bJcFCjR-YwqDrxacb8zsdk1qWHu4WdF9rqA8V-h39Wk2fYqesLGUS9C65uuaqFTe-5R0EcG34rWIJxgW4WaW1JXU2s/s1600/IMG_0086.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZCUohqSRsZOlw0LnPbK4MLwch_luNs7j1u640yitzhcNa2NU5-bJcFCjR-YwqDrxacb8zsdk1qWHu4WdF9rqA8V-h39Wk2fYqesLGUS9C65uuaqFTe-5R0EcG34rWIJxgW4WaW1JXU2s/s320/IMG_0086.JPG" width="320" /></a></div><div style="text-align: center;"> <span style="font-size: x-small;">Lucy Rebecca</span></div><div style="text-align: center;"><br />
</div>Lucy Rebecca is healthy and strong. She is as typical as they come -- from the get-go! Lucy is in the 90% for weight and 95% for height. Her babbling, eating and movement is right on target in every text book and chart. I am in awe of her.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvinD3woUtADGMxSYdyiLYg5B577EiizTNVSS-OWQF8cUsLGAP31chwTPIkcvi5paavEbMYgFbbrA4nlg7enu_9LD7CHSSfcCHgUu5F3KqzynFh-JeOolS7XVnXgHGHChW0pmDDNcVhI8/s1600/394044_2899325841894_1508838114_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvinD3woUtADGMxSYdyiLYg5B577EiizTNVSS-OWQF8cUsLGAP31chwTPIkcvi5paavEbMYgFbbrA4nlg7enu_9LD7CHSSfcCHgUu5F3KqzynFh-JeOolS7XVnXgHGHChW0pmDDNcVhI8/s320/394044_2899325841894_1508838114_n.jpg" width="240" /></a></div><div style="text-align: center;"> <span style="font-size: x-small;">This is Lucy at about a month old. </span></div><div style="text-align: center;"><span style="font-size: x-small;">I couldn't believe the smiles she was giving me. </span></div><div style="text-align: center;"><span style="font-size: x-small;">This was taken after her first holiday party.</span></div><br />
We've had our ups and downs, but 4.5 months later -- cut to today, I'm standing in Amelia's room speaking with her OT. Amelia is sitting at her little table and chair and I come in and plop Lucy on her table, sitting. So the girls are eye to eye and the OT and I are talking...next thing, I hear Lucy start wailing and I look down to find 3 of Amelia's fingers in Lucy's mouth!!! Amelia wants so much to interact with her baby sister, she's just not sure how yet. I keep telling them both "just wait, you're going to be BFF's!"<br />
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<div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy0QXKqlC1ZCS7vmSuu9ZnZ4bDl6OydI6TUWTe-0z_zkb-zUYBfTSHbmlWSv3T0qdd3v7EtBnM2z2rqc-3utt3cUExEBcH3LQVJL5Jgd_6PqQ_JY1Lbh-WuZg9npUBdTtYabFUWFKWWbA/s1600/Amelia+Opening+Birthday+gifts.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy0QXKqlC1ZCS7vmSuu9ZnZ4bDl6OydI6TUWTe-0z_zkb-zUYBfTSHbmlWSv3T0qdd3v7EtBnM2z2rqc-3utt3cUExEBcH3LQVJL5Jgd_6PqQ_JY1Lbh-WuZg9npUBdTtYabFUWFKWWbA/s320/Amelia+Opening+Birthday+gifts.jpg" width="320" /></a></div><div style="text-align: center;"> <span style="font-size: x-small;"> The gorgeous Amazing Amelia</span></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuB3b_nie7CUsxIbKXWpToxbD90-zNoX8_a7iJ2oRNrJYeZ_VojlCg_zeyAUh-AtR3K6ixahXt-QdraXeAwbQG5oIo72J7mw81LWD-VaLNwHJ_TgV5c5pj75y4lboX5tsiw-TOU6z5hFI/s1600/Amelia's+Birthday+at+Scholl.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="207" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuB3b_nie7CUsxIbKXWpToxbD90-zNoX8_a7iJ2oRNrJYeZ_VojlCg_zeyAUh-AtR3K6ixahXt-QdraXeAwbQG5oIo72J7mw81LWD-VaLNwHJ_TgV5c5pj75y4lboX5tsiw-TOU6z5hFI/s320/Amelia's+Birthday+at+Scholl.jpg" width="320" /></a></div><div style="text-align: center;"><span style="font-size: x-small;"> Amelia's 6th birthday party at school.</span></div><div style="text-align: center;"><span style="font-size: x-small;"> Amelia turned 6 on January 24th. </span></div><div style="text-align: center;"><span style="font-size: x-small;"> I can't believe what a big girl she is. She is growing up so fast. </span> </div><div style="text-align: center;"><br />
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</div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoGboj5zFPhEcKTkxKQAGe_uV4gRZ5u6s3yMKY2ij7DVOcs0SSjmeP-A9sWr6-TOW_GKniI6pNm9hChDxpWPfUBPHEMBYGWvdb4RVoA87rTVeyyUtixXQRWnm_t8_JqskEAQBihodJsQA/s1600/Lucy+&+Amelia.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoGboj5zFPhEcKTkxKQAGe_uV4gRZ5u6s3yMKY2ij7DVOcs0SSjmeP-A9sWr6-TOW_GKniI6pNm9hChDxpWPfUBPHEMBYGWvdb4RVoA87rTVeyyUtixXQRWnm_t8_JqskEAQBihodJsQA/s320/Lucy+&+Amelia.jpg" width="320" /></a></div><div style="text-align: center;"><span style="font-size: x-small;">My beautiful girls</span></div><div style="text-align: center;"><span style="font-size: x-small;">This was taken a little over a week ago.</span></div><div style="text-align: center;"><br />
</div><div style="text-align: left;">Here's a wonderful article. I hope Lucy is this devoted to her sister one day.</div><div style="text-align: left;"><a href="http://www.blogger.com/goog_2092236907"><br />
</a></div><div style="text-align: left;"><a href="http://abcnews.go.com/blogs/lifestyle/2012/03/why-a-rising-womens-basketball-star-left-hoops-heaven-for-the-home-team/?fb_ref=.T3JqGt81cVk.like&fb_source=home_oneline" target="_blank">Why a Rising Women’s Basketball Star Left Hoops Heaven for the Home Team</a></div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com5tag:blogger.com,1999:blog-2013696382983520198.post-55341789201110999762011-10-31T19:53:00.000-07:002011-10-31T19:53:53.662-07:00Playdates, Halloween and More...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrz18Jfas5RPH_dTduzDsmLrIe2IhSl5Qw7FP_qVO_Hk_lcgirZ66TOz47XOY1oRV6XZAi4DITvnHiKCO2aTGkW4greZ1UVA3D4wAN4PaeeYaoYoveYB5QRC-kxrF6JyIXBQF7KGVWbMA/s1600/IMG_0026.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrz18Jfas5RPH_dTduzDsmLrIe2IhSl5Qw7FP_qVO_Hk_lcgirZ66TOz47XOY1oRV6XZAi4DITvnHiKCO2aTGkW4greZ1UVA3D4wAN4PaeeYaoYoveYB5QRC-kxrF6JyIXBQF7KGVWbMA/s320/IMG_0026.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Yes, she IS a Rockstar!!!</div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Amelia had her first official playdate yesterday. We met up with one of her schoolmates, who has a typical twin sister -- so it was doubly fun!!! Nestor and I have become friendly with their mom, who is just terrific, so we were really happy to hang out with all three of them. We met at <a href="http://www.cityofcalabasas.com/vtour/parks-recreation/gates-canyon.html"><span class="Apple-style-span" style="color: lime;">Brandon's Village</span></a> in Calabasas, which is a universally accessible playground. It was our first time there and it was really awesome! There are ramps to every part of the structure and we were able to take Amelia all over the place. Their favorite was thing there was this pole with a button you can push to create a cool mist of water. It was in the upper 80's out here and we had spent some time in the sun, so it was wonderfully refreshing!!! The girls LOVED it. Here's a <a href="http://youtu.be/FwyEXBJ7Sbs"><span class="Apple-style-span" style="color: lime;">link to the video</span></a> we took. *Turn down the volume on your computer because I am WAY too loud. Sorry, I'm still getting used to the video on my new phone! <br />
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Today we went to Amelia's school for their Halloween Parade and class party. It was adorable! Amelia was dressed in a festive outfit to show off her Halloweeny spirit. After the big parade, the kids all went trick or treating from room to room and then Amelia was treated to a big plate of frosting from the big Halloween cake her teacher had brought in. She had quite the amazing time with it! <br />
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<div style="text-align: center;">Amelia at the parade in her stander</div><div style="text-align: center;"><br />
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</div><div style="text-align: center;">Concentration is the most important part for destroying a plate of icing! </div><br />
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</div><div style="text-align: center;">Testing the icing to make sure it's okay to proceed</div><div style="text-align: center;"><br />
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</div><div style="text-align: center;"> And it's good!!!!!!</div><div style="text-align: center;"><br />
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<div style="text-align: center;">And not to be ignored...Mommy went as an 8 Ball!</div><br />
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We're 2 weeks away from the big day! And yes, I am getting a little excited/nervous/anxious/crazy!!!!!Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com2tag:blogger.com,1999:blog-2013696382983520198.post-1568052851150528902011-10-13T10:47:00.000-07:002011-10-13T10:47:17.859-07:00Fun at School<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0tc0V7KaapGqkszclJgM21bMqd_4QPKsogc5fkjIimbJ_LMw3pd0zieM3zP1HK9RhEuAUTCpcO_5I_saZz8-rgh_qphcm1Z9h8BDX6_MbfVbNTZZBTkkOZ7x-r85plrHfU_Ksn9xSCOE/s1600/Amelia+swim2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0tc0V7KaapGqkszclJgM21bMqd_4QPKsogc5fkjIimbJ_LMw3pd0zieM3zP1HK9RhEuAUTCpcO_5I_saZz8-rgh_qphcm1Z9h8BDX6_MbfVbNTZZBTkkOZ7x-r85plrHfU_Ksn9xSCOE/s320/Amelia+swim2.jpg" width="208" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Playing in the pool!!!</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div style="text-align: center;">Looks like fun, right?</div><div style="text-align: center;"><br />
</div><div style="text-align: left;">These are pics of Amelia in the "swim program" at school. It looks a little more like sitting in a really cool jacuzzi, if you ask me! There are jets in there and the water is shallow. All her little classmates are around her playing....very cool stuff! Amelia loves the water so it's really exciting that she'll be participating in this every Wednesday of the school year. Of course, nothing is ever easy and I had to get letters to fight the school doctor who wasn't going to let her participate. Apparently, in the past, other parents of kids with Gastrostomy tubes have sued the district because their children developed an infection around their G-tube sites after being in the water. We were told that each class has a freshly cleaned tank and water to go into. I had to write a letter stating that I accept all responsibility for any complications that may arise (uh...didn't I take that oath when I gave birth to Amelia??????) and that I had received permission from Amelia's Gastroenterologist that it was okay for her to participate. I get it. Everyone needs to protect themselves these days because no one ever wants to take responsibility for anything. The great news is...she got the ok and it's all good times and "slip and slide" fun!!!</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Nestor and I have been shlepping Amelia to all her specialists. It's been sooooo busy. In the last 2 months we've been to her pulminologist, neurologist, opthalmologist, dentist, gastroenterologist, ENT, had her MRI done, pediatrician for 6 shots:( -- she was SUCH a good girl and a check-up and lastly, a feeding evaluation done at Children's Hospital. This has been on top of all her school and therapies. We're exhausted! Good news is, it's done. Now we have a month to wind down a little and turn our focus on getting things ready for this new little critter -- who will be invading our house mid-November. I have a c-section scheduled for November 15th...so unless she can't wait, we'll be seeing her just before Thanksgiving. Is it mean to have the nickname "Butterball" already picked out?</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">My folks came into town a couple weeks ago. My mom, sister and dad (yes, he gets credit because he shlepped the boxes to the post office!) worked very hard going thru the hundreds of bags in my folks' basement and picking out the girl stuff 0-12 months, to send out here to me. So much work sorting thru, but so much fun!!!!! Very exciting stuff. Also, the big dilemma has been to ship, or not to ship -- the big baby gear that is. The clothes were a no brainer, but the baby gear is another story. My mom has strollers, high chairs, bouncers and swings in her basement. The question is....how expensive is it to replace these things here in CA or is it cost effective to ship it all and pay hefty rates? While my Mom and Dad were here we went to Babys R Us and did some calculating. Well, somehow we hit some amazing shopping kharma, because they had tons of stuff on clearance PLUS, a salesperson walked by us and mentioned that everything was going to be 25% off on Friday (we were there on a Wednesday). I mentioned that the things we were looking at might not still be there Friday to which she said "put it on hold and call tomorrow (Thursday) and ask them to put it on hold for another 24 hours and you'll be in on Friday to pick it up!" GENIUS! And somewhat sneaky....but who am I to argue with a brilliant plan? So that's what we did. We got a high chair, bouncer, excersaucer, glider with ottoman and a sweet little chandelier for Amelia's room. We already have a crib, pack and play and infant carrier from Amelia and I was able to pick up a snap and go stroller off of Craig's list for $30. So we're in really good shape! Now all I need is to pack my bag for the hospital. Oh, and get everything up to the house from the garage...and wash the hundreds of baby items in Dreft...and put the crib back together...and wipe everything down that's been sealed up in the garage....and, and, and......:)</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">The peace of mind that is helping me thru....Amelia's BFF, Jozette -- who was her respite worker in NY, is coming in the Saturday before the scheduled c-section and staying until just before Thanksgiving. Jozette has an extraordinarily demanding job at UCP, NYC managing adult residences there. She is taking her vacation time to come out west to be here to take care of Amelia while I am in the hospital. Getting Amelia up in the mornings, doing her treatments and packing everything up for school, taking her to school and picking her up. Jozette is an angel! That's all I can say. She is member of the family -- and we are so touched and grateful that she is going to be here. I know it will help Amelia feel grounded when I'm not here. Jozette is so loving and productive, I know she's going to make the transition as smooth as possible. And after that, my mom will be coming out to help. We're so lucky to have such an incredible support system. Truly, truly blessed. </div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com2tag:blogger.com,1999:blog-2013696382983520198.post-30970625412355235722011-09-08T10:22:00.000-07:002011-09-08T10:22:01.647-07:00First Day of SchoolWell, Amelia had her first day back to school yesterday. I really wanted to get pics and video to share...but she was not such a happy camper yesterday. Not sure if it was getting up so early (she had been sleeping in until 7:45/8am every morning!) or just the frantic pace it takes to get her up, dressed, respiratory therapy done and out the door to drive to school. In any case, NOT HAPPY! I did take some video, but it's pathetic as she is kvetching the whole time!!! Today was much better, so I'll try to take some happy video/pics and post them soon!<br />
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Nestor and I are really excited for this year because Amelia has been placed in a higher functioning kindergarten class. Many of the kids are ambulatory, some are slightly verbal and they are all very engaged. It's so terrific to see her around a bunch of kids who are interactive with their environment. Not necessarily with each other at this point -- but the potential is there! <br />
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The other fantastic piece is that Amelia is with her Pre-K teacher, Carolyn again who is just phenomenal!!!! She goes so above and beyond what is expected and that's such a blessing in any classroom setting. Also, the support staff, meaning all the classroom assistants are the same and the biggest thing -- Amelia's healthcare worker, Esther is with her again this year! Amelia is absolutely crazy about Esther and vice versa! Esther works her like no one else! She has high expectations and doesn't take any baloney from Amelia:) Esther treats her like a regular kid and Amelia definitely steps up to the plate when Esther's around. It's great to see.<br />
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There's definitely a settling in process though. Amelia's school day is now much longer, from 8:15am to 2:40pm. The glitch is that she still naps, sooooo that's a little hard. She came home yesterday and was wrecked! It was really hard to get Amelia to nap -- but totally necessary because she was in complete meltdown mode. Also, it was so late in the day I was afraid to let her sleep too long, but things were so "fly by the seat of our pants," unfortunately, we did let her sleep too long (about 50 minutes) and she would not go to sleep last night. Nope, not having it! Last night I think she finally conked out around 10:30pm (yikes!). The really cute thing that happened though is that I laid down in her bed with her for awhile trying to soothe her. I had my big pregger belly to her little back and wouldn't you know it? Amelia's little sister, from deep inside me, started kicking Amelia in her back! Obviously, they were little thumps, but so cute! I was just lying there in the dark, holding Amelia while she was settling down, with a huge smile on my face, while my belly was wrestling around with her future big sis! I just kept thinking -- well, here we go! The little one isn't even here yet and she's already instigating!!!! Life's about to get a whole lot more interesting!<br />
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P.S. By the way, the MRI went great last week. Thanks to all for your support! We'll be seeing her neurologist at the end of September so we won't really know much until then.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com2tag:blogger.com,1999:blog-2013696382983520198.post-46671133728378212052011-09-01T22:36:00.000-07:002011-09-01T22:36:02.893-07:00MRI TomorrowAfter many cancellations and reschedulings, we are finally taking Amelia in for an MRI brain scan. She hasn't had one since she was in the NICU. It may sound odd that we haven't followed up on an MRI -- being that we have a child with neurological issues, but it hasn't really been my priority. Amelia's MRI from the NICU never showed anything. Nothing. Big fat zero! She is who she is...but no tests, scans or otherwise have ever come back as anything but....normal. <br />
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I always cringed at the idea of putting Amelia under anesthesia and exposing her to radiation in order to see some images that are never going to make a squat of a difference in her life. If Amelia was having seizures, this information would be important. If she was regressing and we couldn't figure out why, this would be critical. But as things are today, it's not going to change her plan of care. It's not going to give us some magical answer that will give us the knowledge we need to "heal" her. It's just a gathering of information. Nothing more. <br />
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So, why now? Well, she's five. Also, we have a great neurologist at Children's Hospital (CHLA) who thinks it's time. She posed it simply to us: "She hasn't had one since birth. It's time to have a new MRI done so we can have a conversation about it." I don't know why it made so much sense to me when she said it this time, but it did. I felt like, ok. Let's do this! <br />
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It also helps that Amelia has been very stable these past few months. Since she had her ear tubes replaced in April, she's had just a sinus infection over the summer. Otherwise, she's been healthy and thriving -- although, I will say LAZY! <br />
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Must be the mood in the house with me on "low activity"=sitting on the couch! And Nestor...well, in a nutshell, he climbed up on wall by our front gate to fix a light sensor, fell and has the "rolls royce" of ankle sprains. So he's been lying on the couch next to me. Together, we're about 1/2 a parent! Poor little Amelia, her parents are such fuddy duddys! Anyway, Nestor's on the mend and I am in a temporary state of being...so we'll be back and better than ever in no time.<br />
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</div>Meanwhile, have a great Labor Day "last weekend" of summer. Hope your hot dogs are perfectly charred and your lemonade is cold and sweet! Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com3tag:blogger.com,1999:blog-2013696382983520198.post-4133632332165576912011-07-21T18:02:00.000-07:002011-07-21T18:02:43.154-07:00It Takes a VillageAmelia just got off her second round of antibiotics for a recurring sinus infection. Poor thing was MISERABLE!!!! She seems to be much better now and her system is regulating itself (you know, digestively speaking!). <br />
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Summer school started a couple weeks ago and will be finishing in a couple of weeks. Her healthcare worker, Esther, who is with her during the school year has been by her side all summer and Amelia is so happy to be with her. She looks for her every morning and carries on until Esther arrives. Esther is just so good with her. She knows Amelia's sounds and personality so well and has been able to push her further in her communication skills. For example, Amelia has a button on her cheap talk at school to use the potty (their facility is really well equipped -- I'm working on getting a toileting system here at home for her) and Esther has figured out how to figure out if she is finished or not. Esther will ask her if she is finished and put her hands out, with her fingers touching (this how you begin to make the ASL sign for "finished"). If Amelia is done she will put her hands on top of Esther's hands and the two of them will complete the sign by pulling their hands and fingertips apart and saying "finished". If Amelia isn't done, she'll push Esther's hands away. It's quite amazing that they were able to figure this out! We're incorporating that for everything now. Giving her a chance to let us know what she wants. Not easy with a non-verbal child!<br />
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I am also in the process of getting Amelia some much needed adaptive equipment. The toileting system, which I mentioned is one. Also, a new stander (Snugfit Gecko Upright Stander, size 2) and a tie down stroller for the bus (The New Bug Seating System, with a 4 wheel base). Getting all the sizes, colors, options and accessories sorted out was a little daunting, but it's done and now we're just waiting for the letters of medical necessity to be reviewed by the insurance company so we can move forward with the vendor, ATG Rehab -- who have been wonderful to work with. <br />
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As for me, well, I look like I've swallowed a watermelon -- whole! I'm getting rounder by the minute. We've hit some complications -- baby is fine, thank goodness! I am 22 weeks and it is too soon to make an official diagnoses -- it's not usually done until 26 weeks, but looks like I have placenta previa. That means that the placenta is on top of my cervix. This makes me prone to bleeding, which is what happened last friday -- sending us to the OB. There was a small tear in the placenta and a tiny blood collection in the uterus, which is what caused the spotting. I was put on bedrest for the weekend and went back to the Dr. last monday to follow up to make sure the collection was getting smaller not larger. The blood collection is gone! YAY!<br />
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However, the snafoo for us is that I am now ordered by the Dr. to "take it easy!" Lay around, no working out, nothing stressful and most importantly, no lifting anything over 10 pounds. Uhmmmm, Amelia weighs 50 pounds! My OB said that I've had 1 bleed, 2-3 bleeds and I'm in the hospital for the rest of the pregnancy!!!! So my poor husband has been on call 24/7 when Amelia's nurses aren't here and he has been a doll! Honestly. It doesn't surprise me, but boy o boy....it must be annoying to hear me every few minutes "Nestor?! Can you come here and....." He's been a real sport! <br />
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I called the insurance company, Anthem Blue Cross and our nursing agency, Maxim last friday to start the process of getting more hours of homecare nursing in place while it wasn't an emergency. As the primary caregiver, I can't take proper care of Amelia by myself and if Nestor isn't here, I need some more help! Imagine our surprise when Nestor got a call that he was going to be flying out to North Carolina today to do some reshoots on a pilot. Yesterday. At 4pm. Can you say WHAT???????? I went into panic mode and called EVERYONE!!!!<br />
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I am very fortunate to have terrific people around me -- so here how it went down. I called Maxim yesterday, right away and found out that I needed to get a prescription from Amelia's pediatrician. Her pediatrician isn't in on wednesdays so I knew that was my first call this AM. Because of the placenta previa, Blue Cross assigned me an OB case mgmt. nurse to oversee the rest of my pregnancy and make sure I'm getting all the care and services I need -- so I put a call into her VM yesterday, to call me today ASAP! And the rest went "more awesomely" than I ever could have imagined! Usually it takes 5 days for BC to evaluate and determine a request for more hours of nursing -- but this was a bit of an emergency, so they sped it along. Might have helped that I reminded them that if something happens to me they are going to end up paying for my stay in the hospital for 3.5-4 months and 24/7 home nursing for Amelia! I got a call around 1:30pm letting me know that the approval had gone thru! WOW. Just WOW. <br />
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Nestor flew out at 6:30AM this morning. So, our neighbor, Chuck came over at 8AM and transferred Amelia from the house to the carseat for me. I called the school on the way over and an attendant met me outside and took out Amelia's 45lb. stroller and transferred Amelia into it. Then at pick-up, Esther walked us out to the car and did the reverse. When I got to the house, Amelia's nurse was supposed to be here -- but hit traffic and texted me she was on her way. In the meantime, Chuck's wife peeked out and asked if I needed Chuck again..."yes" I said with a sheepish smile. He came over and transferred Amelia back to the house. Then Amelia's nurse showed up and all is right with the world! We'll do the same tomorrow and Nestor will be home Saturday night. *breathe*<br />
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It takes a village people! It takes a village.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com3tag:blogger.com,1999:blog-2013696382983520198.post-46181400490511180482011-06-27T10:13:00.000-07:002011-06-27T10:13:12.262-07:00Some Mothers Get Babies With Something More<span style="font-size: large;"><i><span style="font-size: small;"> by Lori Borgman| Monday, May 12, 2002 </span></i></span><br />
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<span style="font-size: large;"><span style="font-size: small;">I've read lots of these lovely essays, here's one I hadn't seen before that was posted by a Mom on FB. It's very thoughtful. -D </span></span><br />
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<blockquote>My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. <div class="style3"><br />
</div><div class="style3">Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. </div><div class="style3"><br />
</div><div class="style3">Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. </div><div class="style3"><br />
</div><div class="style3">Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). </div><div class="style3"><br />
</div><div class="style3">Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. </div><div class="style3"><br />
</div><div class="style3">Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. </div><div class="style3"><br />
</div><div class="style3">Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. </div><div class="style3"><br />
</div><div class="style3">Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. </div><div class="style3"><br />
</div><div class="style3">Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. </div><div class="style3"><br />
</div><div class="style3">As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. </div><div class="style3"><br />
</div><div class="style3">Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. </div><div class="style3"><br />
</div><div class="style3">How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. </div><div class="style3"><br />
</div><div class="style3">I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. </div><div class="style3"><br />
</div><div class="style3">I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. </div><div class="style3"><br />
</div><div class="style3">From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. </div><div class="style3"><br />
</div><div class="style3">You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. </div><div class="style3"><br />
</div><div class="style3">You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. </div><div class="style3"><br />
</div><div class="style3">You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.</div></blockquote>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com4tag:blogger.com,1999:blog-2013696382983520198.post-30576447228552505692011-06-04T17:01:00.001-07:002011-06-04T17:02:58.616-07:00BustedSo, this morning Nestor and I went to the LA Premiere of the amazing documentary, "Certain Proof: A Question of Worth." It is a a tremendous project that gives a voice to non-verbal kids like Amelia. <br />
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<iframe allowfullscreen="" frameborder="0" height="349" src="http://www.youtube.com/embed/HJ2qzMZDzoE" width="560"></iframe><br />
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At the end of the film there was a Q&A with the Director, Ray Ellis. A question was asked by an audience member and when I looked back, I saw that it was a father from Amelia's school, who I used to see all the time in the parking lot at drop-off in the mornings. I was a little surprised to see him in West Hollywood on a Saturday morning, so far from the Valley. On the way out we stopped to say hello to him and his wife. I hadn't seen him in a long time and he mentioned that his son is now in a different school. He mentioned that he still reads my blog, to which I said "well, it's been awhile since I did an entry." He agreed. Oops! Busted! I love this blog and I have been very lazy lately in posting.<br />
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I plead morning sickness. Nausea. Exhaustion. Yes...Amelia is going to be a big sister in November. We are very excited and of course, feeling a bit cautious. Amelia has no idea what she's in for. I keep telling her that she's going to be the best big sister and I know she will be. She is all love -- so how could she be anything else! I am having an amnio on Wednesday -- so keep us in your good thoughts!<br />
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Also, Amelia's IEP. Being put on the waitlist (#204) of the inclusion charter school, Chime -- which we are in love with and were hoping against hope that Amelia might get into for Kindergarten. Running to GI, ophthalmology, speech therapy, occupational therapy, physical therapy, OB (for me!) appointments. We've had some out of town company -- which was spectacular!!!! And the rest is just general crazy life!!!!!<br />
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Amelia's latest thing: lastnight Nestor and I went to see "Bridesmaids" (so fun!). As we were walking thru the gate to come into the house, we could hear Amelia hysterically crying from outside. We came in and she was in a full-blown state. Big tears and huffing and puffing. Her nurse said that it had started a few minutes ago right after she hooked up Amelia's dinner feeding. At first I was sure that it was the cartoon on the TV. She can be somewhat temperamental about it and seemed to be reaching toward it. But huge tears and hysteria? Didn't seem right. As I went on the other side of her, I was able to see that she was pointing to the big cup next to the TV that holds an assortment of lollipops. In particular....the big Mickey Mouse eared lolly. We had given it to her a few days before, but because her secretions had been thick the past few days (cold or allergies? not sure!) lollies were off the list for now (aspiration risk). But seriously...she had stated her case and WON! Out came the lollipop and she was absolutely silent for the rest of her feeding. Joyfully glowing in the sticky residue of the pop. It was so incredible to see her fight so vehemently for what she wanted and thank goodness we were able to figure it out. It is so frustrating for us, but just imagine how Amelia must feel. She has been reaching for the lolly at each feeding now. I love it! She is associating a food (even if it is a lollipop!) with her GT feeds. Can you imagine never having eaten food -- for your whole life? Amelia has no real relationship to food. I hope this is another leap for her. Small steps are enormous in her world...and in ours!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-uB5YvW1sZICTJMqIvwkdUdfZXBf9gUhmKXEar-UmhSLv3O3Evs6ZPDSc8g_2CTX6u5El0lABqLGiUrSc8sPpILbLyKbtKo2ZkVJQ3NQxMFYfmkVV0aZjaRJubMxtecRPlT9z34SQL0/s1600/Untitled+0+00+00-20.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-uB5YvW1sZICTJMqIvwkdUdfZXBf9gUhmKXEar-UmhSLv3O3Evs6ZPDSc8g_2CTX6u5El0lABqLGiUrSc8sPpILbLyKbtKo2ZkVJQ3NQxMFYfmkVV0aZjaRJubMxtecRPlT9z34SQL0/s320/Untitled+0+00+00-20.jpg" width="320" /></a></div><div style="text-align: center;">Enjoy it, my girl! You deserve it!!!!!!</div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhB-uB5YvW1sZICTJMqIvwkdUdfZXBf9gUhmKXEar-UmhSLv3O3Evs6ZPDSc8g_2CTX6u5El0lABqLGiUrSc8sPpILbLyKbtKo2ZkVJQ3NQxMFYfmkVV0aZjaRJubMxtecRPlT9z34SQL0/s1600/Untitled+0+00+00-20.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ytY8u3hLYUV-KYZQdX5NihBWm6D3CQch4WaJPkjU2LVt2w_Fxhh9JfqGbjxLUkIwI03PY_mnZRyNF1cVkp5OdgsRa1YY25lS6TW_cGY82WOhAcbkajRxaOFV16o1ErgXAzt0y5LNT8E/s1600/Untitled+0+02+33-21.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ytY8u3hLYUV-KYZQdX5NihBWm6D3CQch4WaJPkjU2LVt2w_Fxhh9JfqGbjxLUkIwI03PY_mnZRyNF1cVkp5OdgsRa1YY25lS6TW_cGY82WOhAcbkajRxaOFV16o1ErgXAzt0y5LNT8E/s320/Untitled+0+02+33-21.jpg" width="320" /></a></div><br />
<div style="text-align: center;">"What are you looking at?"</div><br />
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<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3VnpRCZCe7xpE0l2Zv3Qx3pmHweL52VVFX7Gtab5ZRBkzyKkokUlDFLK3fZo3bS-hZWs33pY2bE8yhgXhGNG98EkyC9NUZhkg5hUDfn2iXoDZludjdJnaxjBIFB4EFLbMwtrd12rBl_A/s1600/Untitled+0+03+57-14.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3VnpRCZCe7xpE0l2Zv3Qx3pmHweL52VVFX7Gtab5ZRBkzyKkokUlDFLK3fZo3bS-hZWs33pY2bE8yhgXhGNG98EkyC9NUZhkg5hUDfn2iXoDZludjdJnaxjBIFB4EFLbMwtrd12rBl_A/s320/Untitled+0+03+57-14.jpg" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3VnpRCZCe7xpE0l2Zv3Qx3pmHweL52VVFX7Gtab5ZRBkzyKkokUlDFLK3fZo3bS-hZWs33pY2bE8yhgXhGNG98EkyC9NUZhkg5hUDfn2iXoDZludjdJnaxjBIFB4EFLbMwtrd12rBl_A/s1600/Untitled+0+03+57-14.jpg" style="margin-left: 1em; margin-right: 1em;"></a></div><div style="text-align: center;">Yummy:))</div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com7tag:blogger.com,1999:blog-2013696382983520198.post-9870995970589687032011-04-11T18:11:00.000-07:002011-04-11T18:11:38.352-07:00All's Well at the OK Corral<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSG31qXF2bRO5K603nvIQR1ur0oVgDznFM_GaKV-JnBZUDFMnDFGl6VpkGiUJsiuGGifnsNEF2J0yFg4hb3y6T0lI-zU7NplDv3w3AZRN_W0cFePpsBTQz7yqBKh-aSzCidbvJpwD4c6Y/s1600/amelia+school+2011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSG31qXF2bRO5K603nvIQR1ur0oVgDznFM_GaKV-JnBZUDFMnDFGl6VpkGiUJsiuGGifnsNEF2J0yFg4hb3y6T0lI-zU7NplDv3w3AZRN_W0cFePpsBTQz7yqBKh-aSzCidbvJpwD4c6Y/s320/amelia+school+2011.jpg" width="223" /></a></div><div style="text-align: center;"> School picture 2011</div><br />
Just wanted to give an update. Amelia's surgery went well last week and we're going to be seeing the ENT this week for a follow up. She still seems to be having sensitivity with the right ear...but I'm hoping it's just taking a few days longer for it to heal up. Anyway, she seems to be happy and enjoying her new ear tubes. Maybe it's because she got to watch A LOT of TV!<br />
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On another topic, we went to see an amazing augmentative communications specialist a couple weeks ago. Amelia did really well on her IPad and worked especially well with an App called "Proloquo2go." It's $189.00. The specialist said to me "I know it's really expensive!" to which I said "Ummmm....if my child is going to be able to speak to me with it...it's priceless!!!!" Perspective is everything friends! <br />
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</div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com0tag:blogger.com,1999:blog-2013696382983520198.post-45272447772683711102011-03-30T21:32:00.001-07:002011-03-30T21:34:33.655-07:00The Same TuneSo....last night was one of those nights. It started when Amelia was on the feeding pump. She had too much gurgling going on and I knew I wasn't going to get much sleep. I looked Amelia in the eyes as I put her to bed and I think she knew too. The first wake-up was around midnight and kept up about every 45 minutes until 3:30am where I got my best sleep of the night, until 6am. There was lots of coughing, a big ol' runny nose and lots of thick yellow secretions. Fun. I must have switched out the blankets I had under her about 7 times throughout the night and suctioned non-stop.<br />
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When I finally got her out of bed and into her stander for her respiratory treatment it was a relief. You know what I mean? It was that feeling of "Well, thank God we got thru that crappy night and now we can get on with the day and figure this thing out!"<br />
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At the stroke of 8:56am I called the Pediatrician's office and miraculously they picked up (4 minutes early!) and gave me an appt for 10:30am. The receptionist who picked up calls Amelia the "Subway Baby" because the first time we were taking Amelia to this Dr.'s office I was getting directions from her to the office and she told me to look for the subway on the bottom level of the building. Having just moved to LA from NYC, I was bewildered and said "You have subways in LA????" She replied "Of course!" That was the moment we both realized she was talking about the sandwich shop and I was talking about public transportation!!!! It endeared us to her. Hey, if it gets me a better appt, so be it!<br />
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I gave the whole rundown to the Pediatrician, she took one look in Amelia's ears and informed me that she has big, double whammy ear infections. Back onto Augmenten (just got off a week ago). Believe it or not -- the timing couldn't be more perfect!<br />
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A few weeks ago I scheduled surgery for Amelia to have tubes put back in her ears next Tuesday. It will be her 4th set. She's had about 4 serious infections in the last 3 months, so it seems pretty clear that it's essential for her to stay well. Had this newest infection taken a few more days to surface, we would have had to cancel -- but we have 7 days. That's easy. YAY! Never been so happy to see an easily-fixed-ear-infection.<br />
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So that's the deal. Getting this girl into fighting shape for Tuesday. Tomorrow we're off to CHLA to get the go-ahead from her new Pulmonologist, Dr. Platzker. Good news is that when our Ped. listened to Amelia today she said her lungs were perfectly fine. Ahhhh, music to my ears.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com0tag:blogger.com,1999:blog-2013696382983520198.post-12183135626159494902011-03-20T12:25:00.000-07:002011-03-20T12:25:21.896-07:00Certain Proof: A Question of Worth<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrPNpLYDfOi6PqiTrmJGtJseiLfN9AGX6InUupdqeMFJ34Qpl6JQ6gOGBC5ESwqePoz3bGNGPKkEHX6B1qDr9-a6HoceY2DTuhz4GdjG28ABwS0hk_keHFuJlu4H7oaeZ9KUq_BpU-sm8/s1600/194518_171966476188040_122876624430359_444146_4667834_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrPNpLYDfOi6PqiTrmJGtJseiLfN9AGX6InUupdqeMFJ34Qpl6JQ6gOGBC5ESwqePoz3bGNGPKkEHX6B1qDr9-a6HoceY2DTuhz4GdjG28ABwS0hk_keHFuJlu4H7oaeZ9KUq_BpU-sm8/s320/194518_171966476188040_122876624430359_444146_4667834_o.jpg" width="216" /></a></div><br />
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Tomorrow, Monday, March 21st @ 1pm EST, I will be Guest Co-Hosting with Tara Ecklund on Family Network TV on Blogtalkradio. We will be interviewing the filmmakers, Susan and Ken Ellis of Footpath Pictures about their full length documentary "Certain Proof: A Question of Worth" and Dr. Karen Erickson, Yoder Distinguished Professor at UNC, Center for Literacy and Disability Studies. Their film is so provocative and important. It really hits home for me.<br />
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To watch the trailer of "Certain Proof: A Question of Worth" click <a href="http://www.certainproof.com/index.html"><span style="color: cyan;">HERE</span></a>.<br />
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To listen to Family Network Radio on Blogtalkradio click <a href="http://www.blogtalkradio.com/familynetworkradio/2011/03/21/certain-proof-a-question-of-worth"><span style="color: cyan;">HERE</span></a>. <br />
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This project was brought to Susan and Ken Ellis by New Voices Foundation. New Voices wanted the Ellis' to create a film that would bring awareness to a population who is largely overlooked and misunderstood because of their physical and communication limitations. <br />
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To watch the "New Voices" project click <a href="http://www.footpathpictures.com/Portfolio.html"><span style="color: cyan;">HERE</span></a>. <br />
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Personally, we are just at the tip of the iceberg with Amelia and figuring out all the paths and battles ahead of us. Amelia will start Kindergarten in September and I know things are going to become more challenging the bigger she gets. I know how important it is to find a strong community of support for us. I am hoping to help those who are coming up behind us...and seeking knowledge from those who have "been there , done that!" It's so important to know what to expect so you can be ready. Sadly, it's anticipating your oppositions move before they make it so you can be ready to defend what you have (ie. therapies, adaptive equipment, nursing, medications, DME -durable medical equipment, teachers, schooling, aids/assistants, oh the list goes on and on!). <br />
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Thanks for listening and please send feedback! I love hearing from you.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com4tag:blogger.com,1999:blog-2013696382983520198.post-54693872338648761592011-03-03T19:23:00.002-08:002011-03-06T11:58:09.524-08:00Family Network TV<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-d7UW8Vp5lNbGBfHzAMoiQk3KHsEzFv2ttqSrGVmTVu8tqTe1uJSPwNBmwEog_31_6ksF386nFMta_v4uIGxHbfCF4oWeeUUwttvOsyxizPmGh-wGerL7wFVPAIBaJAhMwtTTkJVBkMs/s1600/Nest.Deb.Seranno.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-d7UW8Vp5lNbGBfHzAMoiQk3KHsEzFv2ttqSrGVmTVu8tqTe1uJSPwNBmwEog_31_6ksF386nFMta_v4uIGxHbfCF4oWeeUUwttvOsyxizPmGh-wGerL7wFVPAIBaJAhMwtTTkJVBkMs/s320/Nest.Deb.Seranno.jpg" width="213" /></a></div><div aria-live="polite" class="fbPhotoTheaterCaption mbs" id="fbPhotoTheaterCaption" tabindex="0"><div class="clearfix
fbPhotoInlineCaptionEditor editor"><div class="fbPhotoCaption"></div><div class="fbPhotoCaption">**BREAKING NEWS** Being a celebrity family doesn't immune parents from having a child with additional needs. Nestor and Debbie Serrano will be our guest to share their journey with their amazing daughter Amelia. Check out Debbie's blog at <a href="http://www.amazing-amelia.blogspot.com/" onmousedown="UntrustedLink.bootstrap($(this), "5aa2d", event,
bagof(null));" rel="nofollow" target="_blank">http://www.amazing-amelia.<wbr></wbr><span class="word_break"></span>blogspot.com/</a> You'll recognize Nestor Serrano from countless TV shows and Major Motion Movies. As recently as his role in "Secretariat" Also SPECIAL co-host Marianne Russo founder of The Coffee Klatch! <a href="http://bit.ly/hw9eMb" onmousedown="UntrustedLink.bootstrap($(this), "5aa2d", event,
bagof(null));" rel="nofollow" target="_blank">http://bit.ly/hw9eMb</a></div></div></div><input name="charset_test" type="hidden" value="€,´,€,´,水,Д,Є" /><input autocomplete="off" name="post_form_id" type="hidden" value="dc6863956cc1f383791f2fd870e2fe5a" /><input autocomplete="off" name="fb_dtsg" type="hidden" value="PqqNz" /><input autocomplete="off" name="feedback_params" type="hidden" value="{"actor":"122876624430359","target_fbid":"169129206471767","target_profile_id":"122876624430359","type_id":"7","source":"2","assoc_obj_id":"","source_app_id":"0","extra_story_params":[],"content_timestamp":"1299205151","check_hash":"f461d89413ff38a3"}" /><span class="UIActionLinks UIActionLinks_bottom" data-ft="{"type":"action"}"><span class="fsm fwn
fcg"><abbr class="timestamp" data-date="Thu, 03
Mar 2011 18:19:11 -0800" title="Thursday, March 3, 2011 at 6:19pm"></abbr></span></span><br />
<div style="text-align: center;"><br />
</div><div style="text-align: center;"> Nestor and I will be doing a live show on Saturday, March 5th. Join us!<br />
Click <a href="http://www.blogtalkradio.com/familynetworkradio/2011/03/05/nestor-and-debbie-serrano-share-the-journey-of-their-amazing-daughter-amelia-1" style="color: cyan;">here</a><span style="color: cyan;"> </span>to get to the show!!!!<br />
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</div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com6tag:blogger.com,1999:blog-2013696382983520198.post-36789996079023842242011-02-23T13:06:00.002-08:002011-02-23T13:17:16.984-08:00Joe Mantegna: A Prayer from the BenchOur friend, Tim sent this to Nestor yesterday. It's always captivating to me to hear other special parents' stories. To hear about the very beginning, the uncertainty, then the dust settling and finding "normal," your normal -- is comforting and inspiring to me.<br />
I was particularly moved by the end of the article -- let's face it, I was mush! I've always felt this about Amelia but never found the words to articulate it. Beautiful sentiments, truly.<br />
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<a href="http://www.patheos.com/Resources/Additional-Resources/Joe-Mantegna-A-Prayer-from-the-Bench-Tony-Rossi-02-18-2011.html?sms_ss=blogger&at_xt=4d6576aa52646d3c%2C1">Joe Mantegna: A Prayer from the Bench</a>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com2tag:blogger.com,1999:blog-2013696382983520198.post-59096347407120919202011-02-08T11:45:00.000-08:002011-02-08T11:45:29.174-08:00Stories: Everyone's Got One<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-_3B90zg0eja4-6rwYnMLPFmkIvGJGh-lltXRbDTjOyHf68WEQ7Gc4jx1iO0tthr-00zCLnbscJA-HGMaxHdg9BM5CUlEzXiir9Mv6sb432k0HYCWautnAe8HItMsAbxZMoiPZe2_0Y4/s1600/images.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-_3B90zg0eja4-6rwYnMLPFmkIvGJGh-lltXRbDTjOyHf68WEQ7Gc4jx1iO0tthr-00zCLnbscJA-HGMaxHdg9BM5CUlEzXiir9Mv6sb432k0HYCWautnAe8HItMsAbxZMoiPZe2_0Y4/s1600/images.jpg" /></a></div><div style="text-align: center;"><br />
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Amelia is great and everything is going well with her. Lots of wheels set in motion for her including: getting thru a Neurology appointment last week, where we met her new neurologist at Children's Hospital and set up an MRI for her (hasn't had one since the NICU) for the end of February. Met with LAUSD in informal "Due Process" and settled for an hour of Speech and Occupational Therapy weekly, outside of what she is receiving in school. And we are on the hunt for a medically based Feeding Therapist, which Amelia's former OT (the fabulous Debbie Rabin), is helping me out with. And lastly, she will continue with her PT 2x's weekly at Joy for Kids. We have an appt. with Amelia's new pulmonologist tomorrow at CHLA. So things are finally falling into place out here.<br />
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Today I am sad. So sad. <br />
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My mom's oldest girlfriend has been battling cancer for years and years. She is a tough broad and has overcome every bad prognosis doctor's have thrown her way over the years -- with a huge smile and the sunniest attitude you've ever seen. She is the epitome of <i>grace</i>. Her body grows tumors. Lots of them. She has had so many surgeries I've lost count. Yesterday was the day they were going in to do another surgery. Sadly, they opened her up and closed her right back up as quickly, unable to complete the surgery. This was one of everyone's, especially hers', greatest fears. <br />
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My mother's friend and her wonderful husband are huge constants in my life, whom I love very, very much and have known forever. We've taken family vacations together, had countless dinners together and every time we're in town, without fail -- they (and really, all of my folks' dearest friends) make a point of coming over for a visit. I am so blessed to have them as solid role models. For those who have "Team Amelia" t-shirts -- she was the source! <br />
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We also found out yesterday, that my sister-in-law, will have to undergo chemotherapy. Several weeks ago she had a mass in her lung biopsied (she was <i>never</i> a smoker, mind you) and it turned out to be malignant. She had a surgery a couple weeks ago where they removed the upper lobe of her lung, and several lymph nodes that were suspicious. Her prognosis is good, so we are all very grateful for that.<br />
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Time marches on. Nestor and I have our story. Amelia is a huge part of that story and all the things that can and will happen. We have a child with special needs who will depend on us for a very, very long time. But we all have special needs. We all depend on each other for a very, very long time. <br />
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I am so lucky to have two parents, who have each battled cancer and won, victoriously. <br />
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I have a child who overcomes odds everyday and keeps fighting. <br />
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I am sad for the stories, but I am lucky to be a part of those stories and I am so grateful for all the blessings.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com4tag:blogger.com,1999:blog-2013696382983520198.post-41125592184395297262011-01-24T10:34:00.000-08:002011-01-24T10:34:56.163-08:00Dearest Amelia<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: left;"><br />
Happy Birthday to my littlest love. You have taught me more in five years than most people can teach in a lifetime. Thank you for making each day a day filled with love, joy, laughs and tenderness. With all the challenges you face each day, you greet them with perseverance and spirit. Daddy and I have always said that despite your struggles -- you are the sweetest and easiest kid alive (we're not biased or anything!). You have grown so much this year, both physically (oy! my back), emotionally and cognitively. We are so proud of you and all of your tremendous accomplishments -- no matter how big or small they may be. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">This has been a big year for us as a family. Big move to LA. Getting your own big girl room. Starting a new school with new friends. Taking a few airplane trips -- winging back and forth between the coasts. Getting through several colds <i>without antibiotics</i>!!! (HUGE!) Using the potty like a big girl. Taking the lollipop from my hand and putting it directly into your mouth and holding it there all by yourself. You're walking more, crawling more, playing harder and showing your independence around every turn. You are more vocal when you're happy, sad, frustrated or struggling. You dance all the time when you're feeling happy and it makes everyone around you happy (although there are the moments when we're pretty sure you're going to bang your head or tip over your chair/stander and our happiness changes to horror as we beeline toward you -- can't tell you how many of Amelia's nurses have had near heart attacks watching her dance!) You hug and kiss us all the time -- which are THE BEST hugs and kisses I've ever gotten! And yet, you are still easily calmed by Baby Tad -- nice to know some things haven't changed. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">You are so loved, my Amelia. Always know that you are the most loved little girl! </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">With all my heart and soul HAPPY BIRTHDAY ANGEL!!!!! </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHAabXGJ_yt2UxXWw2OOaLMFwswlVximFKCnnlxMWsYKUbbHrgS-SHaqZO_LwPwd4eOu8A6la8gToFZUqXIXqiEROCRLTVSHsy7b1qObY4F1_zwvaXW1lGhshaXsA-1n2oeZQyn0DsE7o/s1600/IMAG0205%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
</a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHAabXGJ_yt2UxXWw2OOaLMFwswlVximFKCnnlxMWsYKUbbHrgS-SHaqZO_LwPwd4eOu8A6la8gToFZUqXIXqiEROCRLTVSHsy7b1qObY4F1_zwvaXW1lGhshaXsA-1n2oeZQyn0DsE7o/s1600/IMAG0205%25282%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHAabXGJ_yt2UxXWw2OOaLMFwswlVximFKCnnlxMWsYKUbbHrgS-SHaqZO_LwPwd4eOu8A6la8gToFZUqXIXqiEROCRLTVSHsy7b1qObY4F1_zwvaXW1lGhshaXsA-1n2oeZQyn0DsE7o/s320/IMAG0205%25282%2529.jpg" width="191" /></a><br />
Yes, it's blurry -- but when you get a smiling pic, you have to share it!!!!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBmsy-hs5BFoTMJRVi0OjUGMQHhzfD5zvzD2NYnY-2d3oyVgeG8322OfIySjCW1hLWjPCSCFOXPLByb9VJm-I7clBkrlP3cdwFbq4I9qTlAKRjxmIZ5GyMYsh0Gp1QnOkcvlx0aC4yJXw/s1600/IMAG0204.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
</a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBmsy-hs5BFoTMJRVi0OjUGMQHhzfD5zvzD2NYnY-2d3oyVgeG8322OfIySjCW1hLWjPCSCFOXPLByb9VJm-I7clBkrlP3cdwFbq4I9qTlAKRjxmIZ5GyMYsh0Gp1QnOkcvlx0aC4yJXw/s1600/IMAG0204.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBmsy-hs5BFoTMJRVi0OjUGMQHhzfD5zvzD2NYnY-2d3oyVgeG8322OfIySjCW1hLWjPCSCFOXPLByb9VJm-I7clBkrlP3cdwFbq4I9qTlAKRjxmIZ5GyMYsh0Gp1QnOkcvlx0aC4yJXw/s1600/IMAG0204.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBmsy-hs5BFoTMJRVi0OjUGMQHhzfD5zvzD2NYnY-2d3oyVgeG8322OfIySjCW1hLWjPCSCFOXPLByb9VJm-I7clBkrlP3cdwFbq4I9qTlAKRjxmIZ5GyMYsh0Gp1QnOkcvlx0aC4yJXw/s320/IMAG0204.jpg" width="191" /></a> </div><div class="separator" style="clear: both; text-align: center;">Amelia loved putting the balloon to her face and squishing on it!!! </div><div class="separator" style="clear: both; text-align: center;">Thanks for all the balloons Auntie Colette! </div><div class="separator" style="clear: both; text-align: center;">(like 50 helium balloons! It was gorgeous!)</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLKOPjMKRLyg7skSFnVdpjoMYhFoOgHCzt8athJJMTB2PIxzCyxB-KK4jcjDWvYlq1N_cUEd5kNdhCwo2H1gurDNJekeQLi3je17c0SyJSsLvePSuIOmPbEDRqqeVR1ABD_lwjTCQJKAM/s1600/IMAG0198.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLKOPjMKRLyg7skSFnVdpjoMYhFoOgHCzt8athJJMTB2PIxzCyxB-KK4jcjDWvYlq1N_cUEd5kNdhCwo2H1gurDNJekeQLi3je17c0SyJSsLvePSuIOmPbEDRqqeVR1ABD_lwjTCQJKAM/s320/IMAG0198.jpg" width="191" /></a></div><div style="text-align: center;"> The famous ice cream cake</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3I6x9vzX9aYPOAZt6p4THIOXl_0K-8q0seD8u1I2-15l23B-kGfrzDNWRttioC_G0cl20x5omotgK8ZbexhrRR0E6QHPU18aZTasXm3_38tStDDmNJtkk-wHQyrzKyexmLifHb-FURCU/s1600/IMAG0202.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3I6x9vzX9aYPOAZt6p4THIOXl_0K-8q0seD8u1I2-15l23B-kGfrzDNWRttioC_G0cl20x5omotgK8ZbexhrRR0E6QHPU18aZTasXm3_38tStDDmNJtkk-wHQyrzKyexmLifHb-FURCU/s320/IMAG0202.jpg" width="191" /></a></div><div style="text-align: center;">Amelia with Patricia, her nurse, Mommy and Daddy just before singing "Happy Birthday"!</div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com5tag:blogger.com,1999:blog-2013696382983520198.post-25077390366026547072010-11-28T21:32:00.000-08:002010-11-28T21:32:07.301-08:00Amelia and MaxHere are the photos of Amelia with Max, our cousins' dog. It's the first time I've ever seen her take any interest in an animal. It's so cool! <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEWp4g5s6LWUI7IGpHEGX8GCAP_sKivNZyK-CrPN_vQRwU_pRCl0r_oWgiHaBEWDJ-4Fl8DnwqUcczBTjl_z2_6g55btfOLeoptT_I2JgM5H5RqFsLQwy-_B8KETZo8kJ9Gr-61nAsmAU/s1600/November+2010+026.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEWp4g5s6LWUI7IGpHEGX8GCAP_sKivNZyK-CrPN_vQRwU_pRCl0r_oWgiHaBEWDJ-4Fl8DnwqUcczBTjl_z2_6g55btfOLeoptT_I2JgM5H5RqFsLQwy-_B8KETZo8kJ9Gr-61nAsmAU/s320/November+2010+026.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTU1nvYdN4ZmeKVT4Sxmo-XET_bZ1b1tihcZF7r8vQfhyphenhyphen8fPpA2Nn7m4fHJ31zXy08tg2aGPv0d8yFAyKwORy6sjBSOh0dbJedEcF1B8yv03BG4ovLzlROUzsVJmh2xop3wf5lEZW3jXU/s1600/November+2010+024.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtDN9OGmmPb5wiB9KUxARMw-QOJRDB1QThw_taTt5IZTMpcTbJnRMN2qjH9-H_N9oEpm6fTsRrTgb_c9uM5DcUECX9gX2lUGZaGL3zIG6ChugZHbbgTJix9oZ9uw3aQyCeQUcyfg_j7lU/s1600/November+2010+027.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtDN9OGmmPb5wiB9KUxARMw-QOJRDB1QThw_taTt5IZTMpcTbJnRMN2qjH9-H_N9oEpm6fTsRrTgb_c9uM5DcUECX9gX2lUGZaGL3zIG6ChugZHbbgTJix9oZ9uw3aQyCeQUcyfg_j7lU/s320/November+2010+027.JPG" width="320" /></a></div><br />
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<div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTU1nvYdN4ZmeKVT4Sxmo-XET_bZ1b1tihcZF7r8vQfhyphenhyphen8fPpA2Nn7m4fHJ31zXy08tg2aGPv0d8yFAyKwORy6sjBSOh0dbJedEcF1B8yv03BG4ovLzlROUzsVJmh2xop3wf5lEZW3jXU/s1600/November+2010+024.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTU1nvYdN4ZmeKVT4Sxmo-XET_bZ1b1tihcZF7r8vQfhyphenhyphen8fPpA2Nn7m4fHJ31zXy08tg2aGPv0d8yFAyKwORy6sjBSOh0dbJedEcF1B8yv03BG4ovLzlROUzsVJmh2xop3wf5lEZW3jXU/s320/November+2010+024.JPG" width="320" /></a></div><br />
Take note of Amelia's new shoes and a BIG THANK YOU to Bubbie and Zadie for early birthday/chanukah gifts. They're actually orthopedic shoes that typical kids in Poland wear. There are numbers on the bottoms and as they wear away the numbers doctors/therapists can tell whether the child is supinating or pronating and there are inserts that you can buy to put in the shoes to correct the child's gait. Amelia's PT uses them with the Therasuit Therapy that Amelia receives 2x's weekly. Amelia walks really nicely in them and can't turn her ankle in them. They're pricey but really easy to get on and off, comfortable for her to wear all day and quite stylish, I think! If you're interested in them go to the site <a href="http://www.ablegaitor.com/">www.ablegaitor.com</a>. <br />
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!Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com1tag:blogger.com,1999:blog-2013696382983520198.post-17600933909451702702010-11-26T17:15:00.000-08:002010-11-26T17:15:40.692-08:00What's New?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6B7xs90rd83h4fMUaz9C3GJ25WQ8ZaljD9q10fmAZNFH_Uk5BXZr4yiMak43NFAWR70J4OKYIbpRIMGOpwcpIzG8jNZdSaZ8F1nH4xF3qdd1YRD7WVOEwxxvM_zBfIBPpaRlyc_FQDcU/s1600/images.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6B7xs90rd83h4fMUaz9C3GJ25WQ8ZaljD9q10fmAZNFH_Uk5BXZr4yiMak43NFAWR70J4OKYIbpRIMGOpwcpIzG8jNZdSaZ8F1nH4xF3qdd1YRD7WVOEwxxvM_zBfIBPpaRlyc_FQDcU/s1600/images.jpg" /></a></div><br />
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Happy Thanksgiving to everyone. This is the first year in a long time that we weren't trekking from Nestor's family in NJ to my family in MD to be with everyone at once. Very strange. Instead we drove about 3 minutes to Nestor's cousin's, The Rosario's house and had turkey day with them. It was truly delicious and we had a wonderful time. The turkey was tender and juicy, the mashed potatoes and gravy smooth, the pumpkin pie was almost as good as my homemade (altho I think Nestor was just being kind because he kept saying "there's just some flavor, some spice in here that is spectacular! I've never tasted anything like it in pumpkin pie"), hmmmm and the company was outstanding. Anywho, it was the perfect new tradition for our new hometown. I am so thankful for our family and friends -- here and across the country! I thought of everyone like crazy yesterday.<br />
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So yesterday I was talking to my folks (they each pick up an extension and it usually results with someone not being able to hear well, or one talking over the other -- tons of fun) and of course the conversation eventually rolled around to shopping. This is the part where my father usually says "well, anything else before I hang up and let you ladies talk?" Only this time he said "is Amelia doing anything new?" To which I stopped in my tracks and thought for a half of a second and said "yeah, actually, she is." I then went on to talk about how Amelia seems to be demanding a little more from the world around her and responding to it more than she used to. For example, when she's on the feeding pump, sitting in her chair and watching her cartoons and I sitting next to her reading a magazine, she'll reach out and pull my shirt or arm or hand to her -- demanding my attention or giving me a hug or kiss. Also, Amelia seems to be a much easier audience than she has ever been. She laughs and reacts much more with a lot less effort on my part (for those of you who don't know, it's called "The Mommy Show" and it's the ridiculous things I do desperately trying to get a laugh or smile from her). It's very exciting! <br />
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Last night at dinner we all encouraged Amelia to pet The Rosario's family dog, Max and she did. The difference is that she really reached for Max. We all laughed and encouraged her some more and she reached out for Max again and again and again and again. We couldn't believe it. She was actually reaching out for him and really playing with Max's fur. We've been around a lot of therapy dogs, regular dogs, cats -- Amelia even used to have horse therapy (Hippotherapy) and has never really bothered with animals before. This was the first time I've ever seen her really interested in an animal. I think there's a lot to be said for how she's beginning to view the world outside herself and her toys.<br />
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But I have to say that one of the most remarkable moments to date happened this afternoon while Amelia was on her feeding pump for lunch. So let me set this up by explaining that Amelia's nutrition is 100% via her gastrostomy tube. She has a high risk for aspiration and chronic pnuemonia's due to aspiration of her own secretions. So although I love giving her flavors of food (she had literally a drop from the tip of my finger of gravy and cranberry sauce last night at dinner, which we wipe out of her mouth after with a cloth) and we try to give her a lollipop 1x daily. It really thickens and causes much more secretions though, so there are many days that I won't give her the lolly because I'm afraid of her hyper-secreting and aspirating. The last couple days I haven't given her the lollipop because she had her flu, tetanus and whooping cough shot on Wed. and she seemed slightly cranky -- I didn't want to mess with her. So she's in her chair watching her cartoons and crying. Just howling and crying and Nestor and I are at a loss trying to figure it out. In one motion she put her hand up, pointing to the cup of lollipops I keep next to the TV and when I asked her if she wanted "lolly" she signed "give me" immediately! We are both so blown away!!!! Amelia signing "give me" were her first words, so to speak. She's only really used them when prompted, ie. "do you want the red ball?"<br />
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To see her put "give me" into real action, proving that she understands the context of using those words and how to utilize them on her own, gives me so much hope in looking to the person she is and who she is becoming. Baby steps friends, I am truly thankful for them. Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com0tag:blogger.com,1999:blog-2013696382983520198.post-44087740304971421792010-11-15T21:20:00.000-08:002010-11-15T21:20:49.546-08:00Sunny and 75 Degrees<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuia4xrH0HGShH8WpVsc_7I2hnAqVYnEyMPdg2wlJeuOEQhgPult5AkJSDoc8hw3KJ_UA0C9lgF0X1P5iTidx1lS-0kD06A-zVRJu7GmK2T3C_Sx5N1sszYlETFYIys6KkrZVKko0Vj2M/s1600/IMAG0139.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a>It's the strangest thing to be sitting here, in November, wearing cargo capris and a little cotton blouse. I haven't quite grasped the concept that although it may get chilly at night...it's going to be sunny and 75 degrees most days for us from now on.<br />
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Amelia is continuing to adjust really well out here. Her newest way to give Mommy and Daddy (and nurses, friends, family -- whoever happens to be standing there) a heart attack is to "rock and roll". She is probably around 45 pounds now and is learning to throw her weight around. Amelia sits in her chair for her feedings (similar to a Trip Trap Chair) or in her stander (which she is just growing out of and we desperately need to get her a new one) and throws her entire upper body from side to side! Nestor has been doing a recur on the show "90210" and asked one of the Grips if he could have a 35 pound sandbag (they use them on set to weight down lights, screens, props, etc, anything and everything really). The Grip said to Nestor "What do ya want it for? To weight down your garage door?" Apparently that must be a common request. Nestor had to politely explain our unusual circumstance and need for it. Needless to say, we now have her chair weighted with a 35 pound sandbag -- but no joke, I think we need another one!!!! It's a real discovery for Amelia to feel her body and it's movement in space. AND, she is moving it quickly! For those of you who know Amelia, she doesn't do <i>anything</i> quickly. Her movements are slow and somewhat floppy, so to see her bounding from side to side is exciting. We're not exactly sure how to work with it. Clearly Amelia is needing that stimulation, and I also think it's cool that she's found a way to provide it for herself -- but it's just too dangerous and scary to allow her to do with reckless abandon. I've started putting a velcro band diagonally around her like a seat belt when she's in her chair, she still does the "rock and roll" but can't get up as much momentum so the chair legs no longer leave the ground! -- as for the stander, I just put my hand on her shoulder and encourage her to stop rocking the whole thing from side to side (the stander is on it's last legs and I'm waiting for it to start splitting apart -- like Forrest Gump's leg braces in the movie). Anyone have any suggestions/ideas?<br />
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Amelia is really getting expressive in her vocalizations and facial expressions. She makes lots and lots of faces while she's playing. When I talk to her she'll scrunch her nose and mouth up in response a lot of the time. Her teacher at Lokrantz, Carolyn is one of the top teachers at her school and Amelia is doing so well in her class. Carolyn is very well versed in Augmentative Communication and Amelia has a 4 button switch at her school table that she uses each day. Also, Amelia has a health care worker who is always with her named Esther. She's really terrific with Amelia and gets her up and around the 3 hours Amelia's at school.<br />
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Nestor and I were able to steal away last weekend for a couple days, to Palm Desert for a Celebrity Gold Tournament benefiting Childhelp. It was a wonderful getaway for a wonderful charity. Childhelp is for children who have been abused and/or neglected. There were so many precious kids there and this event raised so much money to help with their facilities and programs. We were very honored to be there and be a part of it.<br />
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Here are some photos from Halloween at Amelia's school. Nestor is not a huge fan of dressing kids up unless they are part of the dressing up process. So my compromise is to put her into an outfit that is festive and exudes the "Spirit of Halloween." I thought the pants and top were hip and the skirt was actually chosen by Miss Amelia at a recent trip to Costco...so I guess she was actually a part of the dressing up process (so there!)<br />
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<tr><td class="tr-caption" style="text-align: center;">Charming the crowds in the Halloween Parade at school!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBPwC0hBOXExvovCMjp5BXhSEWYy2FZXYu_dvObDCIECwe8Hb-_GIEF9mYktEpiAWZInY192rDEEnheFqC4Qn1fUmlBs9VXu6uvOujjxjk1yg54OEjAc3vfIoOubDTWq-vA1XhyphenhyphenSkcFQ0/s1600/IMAG0144.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBPwC0hBOXExvovCMjp5BXhSEWYy2FZXYu_dvObDCIECwe8Hb-_GIEF9mYktEpiAWZInY192rDEEnheFqC4Qn1fUmlBs9VXu6uvOujjxjk1yg54OEjAc3vfIoOubDTWq-vA1XhyphenhyphenSkcFQ0/s320/IMAG0144.jpg" width="191" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seriously Mom, get the camera out of my face please!!!!!</td></tr>
</tbody></table>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com1tag:blogger.com,1999:blog-2013696382983520198.post-88164195506371229162010-10-15T12:41:00.000-07:002010-10-15T12:41:59.323-07:00People.com article<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: left;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaVZH_KT5-adpWmlse7g-zC5sD5FJzN3DNO_Izhw-lcXEQ5GqWCrud_Xmw5mxNUIW6xTVxvk3PgcJTlpO_mli5PCE7XMXqz-SDfMsdmfyZTgLCTLJaL0cSUbHXwZJfa9mlB3T0Avy2bT4/s1600/IMG00013-20101003-1702.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0an7Ve6EX8_7g2iGSMnlonkI_lv3OAC1fIjkU1mRDJXAb3ENaWwV3lYkPqz6bX7RCmUqx6Fe4TVnp_qrxy0FyWA4D-CdZsijAlCfH_-nN5Ppi22M-PvaVC-2C1ahVnX14l-nBUiBGzHY/s1600/IMG00018-20101003-1708(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0an7Ve6EX8_7g2iGSMnlonkI_lv3OAC1fIjkU1mRDJXAb3ENaWwV3lYkPqz6bX7RCmUqx6Fe4TVnp_qrxy0FyWA4D-CdZsijAlCfH_-nN5Ppi22M-PvaVC-2C1ahVnX14l-nBUiBGzHY/s320/IMG00018-20101003-1708(2).jpg" width="320" /></a></div><div style="text-align: center;"> some pics from our day at Malibu beach</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaVZH_KT5-adpWmlse7g-zC5sD5FJzN3DNO_Izhw-lcXEQ5GqWCrud_Xmw5mxNUIW6xTVxvk3PgcJTlpO_mli5PCE7XMXqz-SDfMsdmfyZTgLCTLJaL0cSUbHXwZJfa9mlB3T0Avy2bT4/s1600/IMG00013-20101003-1702.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
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A really nice article written about our family. <br />
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<a href="http://celebritybabies.people.com/2010/10/15/secretariats-nestor-serrano-on-daughters-cerebral-palsy/#more-115010">http://celebritybabies.people.com/2010/10/15/secretariats-nestor-serrano-on-daughters-cerebral-palsy/#more-115010</a>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com5tag:blogger.com,1999:blog-2013696382983520198.post-46394222529030908642010-09-27T16:02:00.000-07:002010-09-27T16:02:11.494-07:00Falling Behind<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0MWCMek8S7uXx4Jowitqg9A38CeNuSSc-FCV9uG8JG2qo4jTStwWsz7OsUSpcgSVic2KuLoy9WDU0g7E34pfxEgvgOJBOIwdDqFdsYnL5zYflNE_UIIGaUbkvHKhQjNYfAp3Db1cXrDw/s1600/IMAG0127.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="191" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0MWCMek8S7uXx4Jowitqg9A38CeNuSSc-FCV9uG8JG2qo4jTStwWsz7OsUSpcgSVic2KuLoy9WDU0g7E34pfxEgvgOJBOIwdDqFdsYnL5zYflNE_UIIGaUbkvHKhQjNYfAp3Db1cXrDw/s320/IMAG0127.jpg" width="320" /></a></div><br />
<div style="text-align: center;">Daddy and Amelia lounging in the jacuzzi...ahhhhh!</div><div style="text-align: center;"><br />
</div>I am home today going through all the paperwork that I should have gone through about 3 weeks ago. Amelia's Medi-cal Waiver booklet -- which I've filled out mostly, but have to corner Nestor into sitting down and going through the last bit of financial's with me. Her IEP (Individualized Educational Program) letter -- which to be fair, just came home today, but had to call her Service Coordinator at the Regional Ctr. and make sure I signed it correctly and that he is on board for the big meeting next month. We are coming from NY with a really strong IEP -- more therapy than anyone around here has ever seen! I want so badly to do right by my girl, but feel a bit of a pit in my stomach regarding this piece of it. Yes, I can fight, fight, fight...and I will. But you can't squeeze blood from a stone. When we set up Amelia's NY IEP in NY, the school systems were in a different place financially. Services were still abundant and budgets weren't being sliced apart with a paring knife. A year and a half later, I'm pretty sure we're going to have to dig deeper and get creative. I know this move was the best thing for all of us -- for so many reasons, I just don't want to miss the boat on this one, ya know?<br />
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I also need to get down with CCS (California Children's Services) and get them the information they need to "determine Amelia's elegibility" for services. They're an agency set up for children who are medically fragile/critical care cases!!! WTF????? Who is more qualified than Amelia? Jeez! The thing that set me off was when I got a call from a Dr. there. I have sent all of the records requested by the nursing supervisor and case mgr. Then this Dr. calls and informs me that she's not sure if Amelia qualifies for the "type" of therapy they do there. For example, she says, our PT is more geared toward children who are "hypertonic"(high tone, spastic)...Amelia is "hypotonic" (low tone, floppy). WHAT????? Isn't therapy, by nature supposed to be individualized for each person's needs? Sounds like they have some lazy, uneducated therapists there, if that's true. But here's what really ticked me off. This Dr. is calling me out of the blue...with Amelia's file on her desk. She can pretty much tell me anything she wants to get CCS off the hook. She has the advantage because she knows everything about Amelia and as much as I've read and asked professionals/teachers/parents/therapists about CCS, everyone will tell you the same thing "Yeah, CCS is weird. They have their own set of criteria and it's really hard to figure whether or not your kid is going to qualify." Again, WHAT???? This is a Government Agency! Don't they answer to anybody? I asked what happens when a parent goes after them...I was told that as far as anyone knows, that hasn't happened. Well.....California, meet NY!<br />
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The other thing I have been truly slacking is getting the family photos up. I finally got Nestor to agree to give me the back hallway so I can jam it full of our loved ones! Hasn't happened yet. Because the hallway isn't that long, and we have soooooo maaaaannnnnnyyyyy photos, I have designed my master plan of going to Aaron Brothers and buying some of those multi-frames. I'll do it. Probably just before my folks come out at the end of Oct. <br />
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Any lastly, I feel horribly guilty because I have been very lazy and negligent in sending out thank you notes to all our wonderful family and friends who thought enough of us to send us off to California with gifts and giftcards. So wonderful! I started the thank you cards, but didn't want to send half and then the other half -- in case anyone from Group B saw the note from Group A and thought "how rude!" not knowing their's was coming soon. I truly meant to write the other half -- but the days slipped to weeks and so on! This is not to get out of writing the notes...just wanted to say sorry for not being more on top of it. <br />
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This has been the most challenging, exciting, scary, confusing, exhausting....exhausting, fun experience in a very long time. And, as always, I remain...a work in progress.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com3tag:blogger.com,1999:blog-2013696382983520198.post-63909626384711479702010-09-22T10:37:00.000-07:002010-09-22T10:37:16.730-07:00My Nightmare<object width="420" height="245" id="msnbc20b0b5" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=10,0,0,0"><param name="movie" value="http://www.msnbc.msn.com/id/32545640" /><param name="FlashVars" value="launch=39296593&width=420&height=245"><param name="allowScriptAccess" value="always" /><param name="allowFullScreen" value="true" /><param name="wmode" value="opaque" /><embed name="msnbc20b0b5" src="http://www.msnbc.msn.com/id/32545640" width="420" height="245" FlashVars="launch=39296593&width=420&height=245" allowscriptaccess="always" allowFullScreen="true" wmode="opaque" type="application/x-shockwave-flash" pluginspage="http://www.adobe.com/shockwave/download/download.cgi?P1_Prod_Version=ShockwaveFlash"></embed></object><p style="font-size:11px; font-family:Arial, Helvetica, sans-serif; color: #999; margin-top: 5px; background: transparent; text-align: center; width: 420px;">Visit msnbc.com for <a style="text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px; color:#5799DB !important;" href="http://www.msnbc.msn.com">breaking news</a>, <a href="http://www.msnbc.msn.com/id/3032507" style="text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px; color:#5799DB !important;">world news</a>, and <a href="http://www.msnbc.msn.com/id/3032072" style="text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px; color:#5799DB !important;">news about the economy</a></p>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com4tag:blogger.com,1999:blog-2013696382983520198.post-16982804772697230362010-09-15T17:47:00.000-07:002010-09-15T17:47:33.789-07:00Potty Post!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIVN4Sp2H5zjaaYFUf81VSV-uQNDcBHG4a0XkW-tbLBbu4sjOCvF_h_2owPCQPXWLG2ZnEmBAgMHiIsdWMuyPew3Da38OdsmZUascAhKTsFdQb_5PyQLYfIkgtKintKvDL-dbSx32hs7A/s1600/IMAG0094.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIVN4Sp2H5zjaaYFUf81VSV-uQNDcBHG4a0XkW-tbLBbu4sjOCvF_h_2owPCQPXWLG2ZnEmBAgMHiIsdWMuyPew3Da38OdsmZUascAhKTsFdQb_5PyQLYfIkgtKintKvDL-dbSx32hs7A/s320/IMAG0094.jpg" /></a></div><br />
<div style="text-align: center;"> Amelia relaxing on the deck </div><div style="text-align: center;"><br />
</div>It has finally happened..Amelia has now gone #1 on the potty -- averaging about 2x's/day since she started school on Monday. Woo hoo!!!!! Her healthcare attendant, who we really like, informed me on Amelia's first day of school that she will be putting her on the potty 2x's each day at school. So Nestor and I ran out on Monday afternoon and bought a little potty for home. She went #1 for the first time at school and the first time at home was yesterday afternoon. Both Mommy and Daddy were present and you would have thought we had just won the lottery with the hooting an hollering we did! Amelia was very proud of herself too!<br />
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It's weird too because I just had a conversation with another special mom last week about how she's been toileting her son -- who is very similar to Amelia. I was surprised because I hadn't really thought of it as a possibility for Amelia until much further down the road. My friend told me to start making a log of when (more or less) Amelia goes, throughout the day. Then try to put her on the potty when you think it might be the right time. I haven't started the official "log" but I'm trying to feel her diaper and if it's been dry for awhile, putting her on the potty. <br />
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Another thing I haven't done yet, which my friend recommended, is to get her big girl undies and put them under the diaper so she can feel when she gets wet (our kids have enough issues with sensory stuff and diapers these days wick the moisture away, so much so, that typical kids have problems feeling when they're wet) -- so I guess that's next. It just sounds like such a huge commitment and <i>mess</i>!<br />
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No #2's yet...but the day is young!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIVN4Sp2H5zjaaYFUf81VSV-uQNDcBHG4a0XkW-tbLBbu4sjOCvF_h_2owPCQPXWLG2ZnEmBAgMHiIsdWMuyPew3Da38OdsmZUascAhKTsFdQb_5PyQLYfIkgtKintKvDL-dbSx32hs7A/s1600/IMAG0094.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br />
</a></div>Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com3tag:blogger.com,1999:blog-2013696382983520198.post-31130398415610056782010-09-11T15:08:00.000-07:002010-09-11T15:08:44.486-07:009 Years AfterI can't believe it's been 9 years since we were attacked on American soil. Nestor and I stood at the windows in our little apartment on 10th and Hudson St. and watched the unimaginable. I remember the sheer terror and panic I felt. I couldn't believe what I was seeing...there in front of me...not on TV but in front of my face!!!! I kept saying, through the black smoke, as the first tower went down "it's not there anymore. OH MY GOD IT'S FALLEN DOWN!!!" We didn't know what to do with ourselves.<br />
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We took our dogs, Blackie and Elvis out for a walk. Everyone was walking around in a haze. There were throngs of people walking up Hudson Street covered in black soot -- dazed and confused, silent, crying, weeping. They looked like the walking dead. No traffic, just Emergency Service Vehicles. Nestor was desperately trying to look for his sister, Evelyn, who worked in the American Express building adjacent to the Twin Towers. We found out later that she had come directly to our apartment, but in her confusion couldn't find our correct apartment buzzer, so she went around the corner to the PATH station and got the last PATH train back to NJ where she lives. But Evelyn didn't reach us for some time later and until then we were panicked to know what had happened to her. <br />
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We lived on 10th Street where the 6th Precinct is located. You couldn't even get onto our block without a photo ID with your address on it. For weeks, vehicles couldn't get in below 14th Street, including groceries, papers, everything. There was price gauging on milk (altho in NYC, how can you really tell), the gyms were closed, we just sat in our apartment with the TV on, day and night. It was so somber and dark where we lived. The black soot kept settling on the window sills. <br />
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Time ticked by so slowly. One day we decided to go for a walk and head east. The strangest thing happened -- the farther east we went, the livelier things became. By the time we hit Alphabet City -- life was happening. The outdoor cafes and bars were spilling over with chatter and laughter. Sounds of dishes and cutlery, cars, traffic....LIFE. We had been living in a war zone in the West Village -- literally. It felt so good to get out, have a drink, some food and actually smile again. <br />
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Those were such black days -- for the entire nation. I am grateful that I was there to see it firsthand. As horrific as it was, it was an event that I will sadly hold in my heart forever. <br />
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In the weeks after, there were hundreds of people camped out on the West Side Highway with food and water for workers in Emergency Service Vehicles. We all learned to look at Policemen and Firemen in the eye as we walked by them on the streets and give them a solid "hello" and "thank you." Seeing the out pouring of love and support to our nation's first responders -- firefighters, police, EMS and all the other people that pitched in their efforts -- they are our heroes. And of course, remembering all the people we lost 9 years ago...who will never be forgotten.Debbiehttp://www.blogger.com/profile/12747481175356171210noreply@blogger.com2