tag:blogger.com,1999:blog-23960754549261890312024-03-14T08:59:50.668-07:00abby marieAnn Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.comBlogger190125tag:blogger.com,1999:blog-2396075454926189031.post-11458064780078160412014-05-07T08:30:00.001-07:002014-05-07T10:11:15.671-07:00Abby's first visit to Boston for the IGF-1 TrialThough I haven't blogged in a while, I think this is a good time to start again. We just got back from our first trip to Boston, where Abby is participating in the IGF-1 trial. We enrolled Abby in the trial a couple of years ago, and again in October. We are so very excited to finally get started! This trial is the first ever designed to treat Rett Syndrome, rather than just addressing individual symptoms of the disorder. IGF-1 is already FDA approved to treat children with a deficiency of IGF-1, which leads to growth problems. The expected outcome is that the growth hormone will aid in the maturation of the synapsis in the brain. The immaturity of the synapsis in the brain of those with Rett Syndrome prevents the signals from the brain from getting to the rest of her body. The potential effects are improvements in behavior and communication, decreases the irregularity of her vital signs including breathing and heart rate, decreases in anxiety and hand stereotypies, and improvement in the way the brain communicates with the rest of the body. It's very exciting to be a part of this trial, as the potential could be life changing for Abby and all girls with Rett Syndrome.<br />
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We were in Boston for 2 weeks, while the researchers assessed Abby to verify that she was a good candidate for the trial and to do a lot of baseline assessments. The tests are all non evasive, and Abby handled them like a rockstar. I was concerned that being away from home and having to undergo these tests in a strange place would be stressful for her, but I think she understands that everyone that treated her was trying to help her. The team in Boston is wonderful. They were comforting to her and they made me more confident that enrolling Abby in this study was the right decision. </div>
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Abby very much appreciated EEG helmet. It was much easier, comfortable, and less painful to put on than the ones used at most hospitals! </div>
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Much of the testing was just monitoring Abby's breathing, heart rate, and hand movements. She wore bands on her chest and sensors on her hands that detected movements. </div>
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Dr. Kaufmann, the principal investigator, was wonderful. I'm very comfortable with her in his care for the duration of the study. </div>
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After 12 days of testing, the day finally came for us to get Abby's first dose of the medication. I've never given myself or anyone else an injection of any kind, so I was a little nervous. After instruction by the nurse though, it was easy. Abby didn't even flinch and had no adverse reaction. We will continue to give her the injection twice a day for the next 20 weeks. After 20 weeks, she will get no injections for 28 weeks to washout any medication in her system. She will then start taking the injections again for 20 weeks. One of these 20 week periods will definitely be IGF-1, while the other will be a placebo. We don't know when she will get the IGF-1, but we hope she's getting it now! It will take her a few weeks to work her way up to the full dose, so we don't know how long it will take for us to expect to see some improvements if she is on the drug. We'll have to just wait and see. </div>
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We tried to make the most of our trip to Boston. Wes, Logan, and myself went with Abby for the first week of the trip, and then the boys went home for the second week. We wanted Logan to see what Abby was doing in Boston to help him understand the injections and the trial. While the four of us were there, we had a few days without appointments that we took full advantage of. </div>
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Happy Easter!</div>
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Having to travel to Boston 6 times, with 4 of those trips being 10 days, is quite an expense. We enrolled Abby in the trial and then immediately started looking for ways to make it happen. We are so blessed to get connected with the <a href="http://www.themollyjohnsonfoundation.org/mollys_story.php">Molly Johnson Foundation</a>. After hearing Abby's story, they graciously offered to fund our transportation for our trips to Boston. We are SO grateful! They even stopped off the week of our trip and dropped off a care package to help get Abby ready for the trip. She was so excited when she came home from school to find a bag full of goodies, PJ's, treats, and fun travel games. Their support, and the support of family and friends has been awesome! </div>
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We have a long way to go, but we're so excited to be a part of this trial. It feels like we are in the process of finding a way to make Abby better, rather than keeping her from getting worse. Four years ago, we were told that Abby had Rett Syndrome. We were told that there was no treatment, and even if there was, she would never be eligible, as the damage to her brain was permanent. A lot changes in four years. On our four year diagnosis anniversary, we were in Boston participating in a drug trial to treat Rett Syndrome. This drug trial is only the first of many. We are so much more hopeful for Abby's future than we even have been before!! </div>
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Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-60014583504475782122013-09-11T20:22:00.000-07:002013-09-13T18:30:08.480-07:00Planning Disney with a child with special needsLike I said before,our trip to Disney was wonderful. We all had an amazing time, but I have never made so many lists in all my life as I did trying to get ready for this vacation. I have always been a planner, but with Abby, my lists take on a whole new level. The last thing I want to happen is to run out of seizure meds in Orlando, or for her to have a seizure in the park & not have a change of clothes. I even made a list of things to pack in the bag to take to the park once we got to Disney. I know I'm not alone in the planning and packing frenzy that comes with taking a child with special needs anywhere, let alone to a theme park. I practically fill my trunk just to go to the zoo. I know there are a million websites with Disney tips, but I thought I would share a few things that we thought were useful and that may help another family plan a little easier.<br />
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When we went to Orlando, the temperature was about 90 degrees at the hottest time of the day. There were rain showers that cooled it down, but it did get pretty hot at times. Abby doesn't tolerate heat well, so we packed a few things to help her cool down. This little fan was perfect on the days when it was overcast, but still humid. It also worked well in the shade. In the sun, however, it was just blowing warm air in her face. I could put ice water in it and mist her with it, but we mostly just used the fan. <br />
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We put the fan in this <a href="http://mealtimepartners.com/products/drinking_products.htm">mounted cup holder</a>. Its purpose is to allow her to get a drink without help, but it worked great to hold the fan as well. She uses one that is similar at our dinner table, but this is the only one that I have found to be strong enough to hold a cup at the right level on her wheelchair while the chair is moving. She drinks a lot, so its nice for her to be able to do it independently. We even put it on her carseat on the road trip. It was expensive, but worth every penny. <br />
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Another thing that kept her cool was this <a href="http://www.amazon.com/Frogg-Togg-Chilly-Pad-Blue/dp/B003YF7W22">cooling towel</a>. When wet, the towel stays cool until it dries. Vendors were happy to let us use their ice water to dampen it, and then it kept her legs protected from the sun, and cooled down. </div>
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If possible, I also highly recommend bringing a few of these. Squeeze them in your trunk if you have to. Having more adults than children is always to good thing. It was great that Abby could relax with my parents while Wes and I rode a few rides with Logan. I'm glad we got to share this experience with my parents. Logan and Abby loved having them join us. In fact, we were only an hour into our trip home when Logan started crying that he missed them. Thanks, mom & dad. We wouldn't have had nearly as much fun without you guys! </div>
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While researching our trip, I learned quickly that we would need to go to the guest relations office and get a guest assistance card. This card told the people at the entrance to the ride two things, that her wheelchair was a wheelchair and the she can use an alternate entrance when available. I don't really know which rides provide an alternate entrance other than the wheelchair accessible entrance. Every ride we entered used the fast pass entrance as the accessible entrance for wheelchairs. For us, the useful part of the card was to identify her wheelchair. For some reason, everyone assumed she was in a stroller. I think lots of big kids who typically would walk use strollers at Disney, so they're used to big kids in strollers, and don't consider that they could be in a wheelchair. After a few days, one of the workers suggested that we get a red tag on our "stroller" that said it could be used as a wheelchair and then we wouldn't have to search for the card at every ride. Even though I was tempted to argue that I didn't need that because it WAS a wheelchair, I am thankful for her advice. Once we got the red tag that indicated that our "stroller" was to be used as a wheelchair, we no longer had to show the card or explain that it was a wheelchair. As soon as the workers saw the red tag on her chair, they showed us where to enter. If you have a wheelchair that looks anything like a stroller, even if it says "pediatric wheelchair" and has footplates, go ahead and get the red tag put on it at guest relations. It will save you from having to explain or keeping track of the the GAC card. We didn't use the GAC card at all after we got the tag, but maybe some rides had an alternate entrance that we didn't use? I'm thinking that an alternate (air conditioned) entrance might be used if the accessible line was long and outdoors? While we were there, the lines were short, so this wasn't an issue. I'm thinking in most circumstances the tag would do the same thing. </div>
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If you have a child who gets overstimulated, then you are probably like me and have a pair of headphones in your bag all the time. If you don't, you may want to invest in some for Disney. It gets loud. The restaurants are loud. The parades are loud. The rides are loud. The fireworks are loud. If I had earplugs, I would have used them myself. It can be a bit much, so be prepared. </div>
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It takes a lot of planning to pull it off, but it is SO worth it! If you're planning a trip soon, I hope this gave you a few ideas. </div>
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<br />Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com1tag:blogger.com,1999:blog-2396075454926189031.post-37787548286654559682013-09-10T20:46:00.000-07:002013-09-11T15:53:09.312-07:00The Happiest Place on Earth<div class="separator" style="clear: both; text-align: center;">
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What an amazing week! Following our trip to the Rett Clinic at UAB, we headed to Disney World. It was the first time either of the kids had been, and the first time in 10 years for Wes and I. I was apprehensive taking Abby to Disney. I've heard that it's a great place for kids with special needs, but I feared she would get over-stimulated. That could make her have lots of seizures or just sleep the whole week. Thankfully, she did neither. We all had a wonderful time! It really is the happiest place on earth. The people who worked there went out of their way to accommodate Abby. They were courteous and polite and helpful. <br />
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For the most part, we went to the parks in the morning and rested at the pool or in the room in the afternoon and evening. I use the term "rested" loosely because Abby rarely napped the entire week. I don't think she wanted to miss anything. I can't believe how calm she was in the middle of all the chaos that surrounded us. She took it all in. She did get a little too excited on the way to her breakfast with the princesses and had a seizure. But even then, she stayed awake after and was able to attend the breakfast. I'm so relieved that she recovered so quickly because the breakfast was perfect. She met all the Disney princesses and seemed to enjoy every minute of it.<br />
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Logan said he didn't want to go and certainly didn't want to hug any princesses, but his mind was changed by the bikini-wearing Jasmine, who assured him she was not a real princess.</div>
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We spent our first day in the parks at Animal Kingdom. Abby and Logan both loved the raging rapids and the safari. We also spent a lot of time in Dinoland USA. Logan is a little obsessed with dinosaurs lately. We spend about 4 hours at Animal Kingdom, and then headed back to the resort. It was a beautiful day, not too hot or humid. </div>
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The next day, my parents flew down and spent the rest of the week with us. It was great to have them there to share the experience with the kids and to help out! For the rest of the week, we went to Hollywood Studios and revisited Magic Kingdom. It was so much fun! Abby rode almost everything that we did, with the exception of a few fast or jerky rides. She really seemed to enjoy herself. </div>
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She loved the electric parade!</div>
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Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-33172972072613946262013-09-10T19:55:00.001-07:002013-09-10T19:55:44.324-07:00Slumber Party<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: left;">After our appointment with Dr. Percy, we checked into a hotel. Wes had a conference in Vancouver and wouldn't meet up with us until the following evening, so it was just the three of us. Getting settled in the hotel went unexpectedly smooth. We played in the pool and then got ready for bed.</span></div>
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"Hey guys, we're going to get some popcorn and watch a movie in bed! Won't that be fun?"</div>
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(all smiles)</div>
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"And then you guys are both going to sleep in this bed"</div>
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Wow. Sometimes she doesn't really need words. She didn't really have to share a bed with Logan. I thought I would try it, but she wasn't having it. </div>
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<br />Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com1tag:blogger.com,1999:blog-2396075454926189031.post-29884336311083627312013-09-09T07:18:00.002-07:002013-09-09T07:22:53.445-07:00Rett Clinic UpdateEvery year, we take a trip to Birmingham to the Rett Clinic to see Dr. Alan Percy and Jane Lane. They are the experts in all things Rett Syndrome. We made our first trip when Abby was two, just a few months after her diagnosis. At first, the visits were nerve racking. We were scared about what new symptoms were appearing, what toll Rett was taking on her body, and what to expect. <br />
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After 5 years of visits, the appointments are much more relaxing. It is just nice talking to doctors who understand what she is dealing with. When I explain her most recent weirdnesses, they've seen it before. They don't give me blank stares. They don't have to tell me to wait, while they look up something on their iPad. One of my biggest concerns for her now is her leaning to the right and spasming. Her spine x-rays are straight, but sometimes she leans so much that she can't stand, walk, or sit. When she is leaning, she is also rocking and it's impossible to straighten her out. Dr. Percy says she has dystonia in her trunk. Dystonia is involuntary contracting of a muscle/group of muscles causing repetitive or twisting movements in the affected area. Thats exactly what is happening to her trunk. Not surprisingly, there isn't an easy fix. Right now, it is happening a few times a day. It lasts for a few minutes, and then she regains control again. When she gets dystonic, she needs to be held or put in her wheelchair and wait until it passes. It can be brought on by anxiety, which seems to be the case sometimes. If the dystonia becomes more of a problem more often, then there is medication, but it isn't something that we are going to try yet. She also has dystonia in her ankles. That is the reason why they are twisting inwards and causing her to walk out the outsides of her feet. She will need to wear braces on her feet all the time. She has been wearing them at nights, but I've been less consistent about daytime wear because I wasn't really sure she needed them. Dr. Percy says wear them all day so wear them all day she shall. They will hopefully keep her feet from turning in and prevent her heel cords from tightening. <br />
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We also talked about seizure control. Although her seizures are fairly mild, she still has them on a regular basis. She has about 4-6 per month. He thinks we need to increase her Lamictal in the morning, so we'll start doing that this week and see if it helps. She is on a moderate dose of Lamictal, so there's plenty of room to increase until we can get them to stop. If we get them to stop, our plan is to stop taking the Keppra. I'm also going to talk to her pediatrician about trying Lexapro again. She tried it for anxiety, but we didn't notice any changes. Since the dystonia could be brought on by anxiety, it's worth it to try to manage the anxiety again. The Lexapra dose that we tried last year was very low, so we may just need to increase it to get some improvements in her anxiety level. <br />
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Overall, Abby is doing well. We're making some changes with meds and she needs to gain a few pounds (which is hard to believe because she eats A LOT), but that's always the case. She is always so happy seeing Dr. Percy, and is determined to see what is written in that folder of his. She constantly hovers over his work and pats his papers. This visit, she managed to knock the whole thing on the floor. <br />
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I really don't know what we would do without Dr. Percy and his team. Their advice drives most of the decisions that we make about Abby's care. They make recommendations of her specialists, which they always follow. They are always available to answer questions or write recommendations. Dr. Percy's letter was one of the things that got our district to provide her a designated aide in the classroom. The dedication they have to girls and women with Rett Syndrome is just amazing. Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-34510012993945716372013-08-20T20:41:00.002-07:002013-08-20T20:41:21.432-07:00Back to SchoolToday was Abby's first day on first grade, round two. She missed a lot of school last year, so we thought this would be a good year to repeat. My only hesitation was that she absolutely loved her mainstream class last year. They were great with her and I hate that they are moving on without her. I hope that this year's first grade will be just as great. She has been telling me with her computer for the past few weeks that she wants to go to school, so I know she was ready. <br />
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She is riding the bus this year for the first time since preschool, so that will be one change. She enjoyed the bus then, so I don't expect it to be a problem. When she has seizures, they do tend to occur in the morning at around the time of pick-up, so I'm hoping that isn't an issue, but we'll just have to wait and see how it goes. This morning the bus was very early. We rushed her out with barely enough time to snap a picture!<br />
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I haven't posted in so long! Here's a few photos from the summer. </div>
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We went on a trip to Gulf Shores this summer and had a great time. The kids got to spend time with their cousins and aunt that they don't see that often, and their memaw and papaw. It was perfect timing as Abby's fellow Rett sister, Avery, who lives in Gulf Shores, was having a birthday party while we were visiting! I met Avery's mom, Carrie, since shortly after Abby's diagnosis, but it was the first time Avery and Abby met. Girls with Rett seem to have an immediate connection that is so sweet to watch. </div>
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Abby enjoyed playing in the water and walking in the surf. The heat didn't seem to bother her for the most part. She only had one seizure on the trip, and that was on one particularly stressful day. </div>
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She sleeps a lot on trips. I think its her way of dealing with all the overstimulation that comes with vacationing. She can sleep anywhere!</div>
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Abby spend a lot of time early in the summer playing in the water, both in the pool and standing in her gait trainer against a water table. </div>
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Summer was fun, but we're all ready for the routine that the school year brings! </div>
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Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com0tag:blogger.com,1999:blog-2396075454926189031.post-39231468813123178222012-11-23T20:51:00.004-08:002012-11-23T20:51:51.196-08:00Abby starts with A!Something amazing happened this week. Alison, Abby's speech therapist, and I were talking with her today about school. Abby kept grabbing the turkey that she made earlier that day at school. I guided her to the "art class" page on her computer so she could tell us about it. She immediately said "red, yellow, orange". It's not often that Abby is that quick and consistent. I could tell she was "on". She then went, on her own, to the alphabet/spelling page. The letters are arranged like they are on a rotary phone (remember those?), with each box representing three letters. When she hits the ABC box, she has the choice of selecting any of those 3 letters. In the spelling page, she can also say things like "it starts with", or add punctuation. Anyway, she immediately spelled her name. A-B-B-Y!!! She was able to go in and out of the letters three times and find all the letters. We hadn't even asked, which is probably why she was able to do it without getting anxious. Amazing. So her therapist and I both went crazy and Abby proceeded to say "it starts with A". And thats not all. She kept tapping the turkey with her hand and then said "it starts with T U". She was so proud of herself. <b>My girl is learning how to spell!!! </b><br />
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<br />Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com4tag:blogger.com,1999:blog-2396075454926189031.post-33508692234735339782012-11-14T19:19:00.000-08:002012-11-14T19:40:44.172-08:00Technology<div class="separator" style="clear: both; text-align: left;">
In the spirit of Thanksgiving, I'd like to write how thankful I am for technology. This is, by far, not the thing I'm most thankful for, but today it seems pretty important. Not the technology that allows me to make phone calls while browsing the internet, or watch movies and play games, but the technology that makes Abby's life better...and easier. I'm so thankful for these resources that enable her to communicate. She uses technology a lot. It's not unusual for her to use her communication device (<a href="https://store.prentrom.com/product_info.php/cPath/11/products_id/142">Eco2 with EcoPoint</a>) to talk while using a laptop computer to listen to a story. When she is stressed and over stimulated, she listens to music on my phone to calm her, or interacts with my phone to kill time in a waiting room. Would we survive without these conveniences? Of course. However, I definitely appreciate the difference they have made in our life. Touch-screens that respond to her touch, even though it is neither refined nor consistent, make her happy. A communication device that responds to her eye gaze is just amazing. </div>
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Abby and Logan listening to a story on <a href="http://onemorestory.com/">onemorestory.com</a>. She is using a jellybean switch to turn the pages and commenting on her communication device. </div>
Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com1tag:blogger.com,1999:blog-2396075454926189031.post-24534082596946540902012-11-13T18:01:00.001-08:002012-11-14T19:33:31.823-08:00School UpdateToday, we had an ARC meeting for Abby to discuss the need for her to have a one-to-one aide and to increase her minutes in the regular classroom. Thankfully, the meeting went well, and an aide was written into her IEP. We have requested an aide a couple of times since Abby entered preschool, but each time it was determined that she was "well cared for" without an aide. Our latest request was about 6 weeks ago. It was again determined that it wasn't needed. Ugh. We weren't happy with the decision, so we scheduled an ARC meeting to discuss it further. A couple of weeks before the meeting, Abby was injured at school. She was sitting in a chair that was knocked over, sending her face first to the floor. Fortunately, she didn't put her hands out to catch herself (which certainly would have caused a fracture), so her only injuries were to her lips, teeth, and gums. After the trip to the hospital, our resolve to get her an aide was even stronger. I wish it hadn't taken an accident to get Abby the services that she needed, but that's pretty much how it went. After a lot of phone calls to attorneys and advocates, recommendations from doctors and specialists, and Abby missing over a week of school, the district finally did the right thing for Abby....albeit a little late, but they did it nevertheless. <br />
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It has been beyond stressful. I'm so relieved that this fight is over. It has left me very disappointed in our school district, or at least the decision-makers who do not actually work with the kids that they are making decisions about. However, the teachers and staff that work with Abby are great. They are supportive and have her best interests at heart. I am so excited for her to have more time in her mainstream room! I did a little lesson about Abby and Rett Syndrome for that class a few weeks ago and they were very receptive and welcoming to her. She has been increasing her time in the regular classroom gradually since kindergarten. It has worked well, and she is progressing smoothly. She has reached the maximum amount of minutes she can mainstream without changing her placement to a regular education classroom. For now, the placement is great. She loves being around her typical peers. Without their own communication barriers, they are able to connect with her in a very different way than nonverbal kids like herself. With her aide, I am comfortable with her being able to have the modified instruction she needs. I still think she is benefiting from the small group instruction in her self contained room, especially while she is learning how to use her device. For now, this is a great fit for Abby and I am very excited for what the rest of this year will bring. </div>
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School buddies</div>
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Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com1tag:blogger.com,1999:blog-2396075454926189031.post-68589480989114549122012-11-01T20:12:00.001-07:002012-11-01T20:12:55.795-07:00How's Abby?I haven't blogged in what seems like forever. I've thought about it many times, but the longer I wait, the more "catch-up" I want to do. If you know Abby, you know a quick "catch-up" is not easily done, so I get overwhelmed and end up quitting. So I'll just start with a picture and go from there.<br /><br /><br /><center><a href='https://picasaweb.google.com/115363326148092983558/October222012#5806048346195287250'><img src='https://lh3.googleusercontent.com/-aw3LAxvjHwc/UJM6NYe23NI/AAAAAAAAAmY/FF5d2wmoUvk/s288/1.jpg' border='0' width='281' height='186' style='margin:5px'></a></center><br /><br />Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com4tag:blogger.com,1999:blog-2396075454926189031.post-26206059768610488882012-05-20T19:47:00.002-07:002012-05-20T19:50:12.739-07:00Water workoutAbby started doing her PT in a heated pool last month and it got me thinking that we should take advantage of Abby's love of water. She can't walk in the baby pool (the typical 12" depth is awkward) and she isn't able to stay upright in a lifejacket, so she usually sits in a float. In an attempt to make the water a little more interesting/therapeutic for her, we bought this huge monstrosity for our yard. The water is about 30" deep, so it lets the ring stay at her waist, giving her support if she needs it, but allowing her to walk safely. It has a seat to catch her when she falls. Today she was even putting weight on her hands as she walked! The resistance in the water will be super beneficial and I know she likes being able to maneuver around the pool independently for the first time. Logan is going to have a blast in the pool this summer, too. I love it when an idea actual works out....for now:)<br />
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When we bought this float for her at 6 months of age, we thought she would outgrow it over the summer. It makes sad (and a little mad, honestly) every summer that I get it back out. I will be very happy when we can finally retire the blue duckie ring!</div>
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On a related note, check this out!</div>
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</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-89991825308393301462012-05-08T19:04:00.002-07:002012-05-08T19:23:35.405-07:00We caught one....finally!We have tried several times to catch what we think are seizures on an EEG. Her events/episodes/seizures are very sporadic. She may have 8 in one day, and not another one for 3 weeks. We had an appointment with her neurologist yesterday. He suggested that we add a new medicine because she continues to have events on a regular basis. I am uncomfortable adding a new medicine without confirming they are seizures. As we left the office, I asked if we could try again to do an ambulatory EEG. That's an EEG that they hook up in the office, but we get to go home and return the next day to have it removed. As it turned out, they had an opening. Just so you know, that never happens. It is usually a matter of scheduling the EEG several weeks in advance. Although Logan was not thrilled for what amounted to four hours in the doctor's office, we had to do it. I never thought I would pray that she had a seizure/episode, but today I did. I am so relieved that she did have an event before we returned the EEG!! Hopefully, everything was working correctly and the doctors will be able to read it and let us know definitivly if these events are seizures of not. Just knowing that we don't have to keep trying to catch one on the EEG will be a burden lifted.<br />
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Hopefully, Abby won't have to sport the head wrap again for a while. I pulled out all the stops today trying to get her overly excited/anxious. We went shopping, which made her a little anxious, but when I started running out of time, we headed to lunch. If Chick-fil-a at lunch time doesn't cause a seizure, I don't know what will.....and it did. </div>
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I felt more than a little guilty about trying to get her to have an episode, so I gave her plenty of time to relax and wind down after the EEG was removed. Sorry, Abby:( </div>
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</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com5tag:blogger.com,1999:blog-2396075454926189031.post-40012801401214611032012-05-08T18:39:00.001-07:002012-05-08T19:24:59.158-07:00Walking with the gait trainerAbby received a gait trainer when she stopped walking without assistance. We were so happy to get it, but she didn't really take to it until recently. She would stand in it, but wouldn't take many steps. She did much better with a harness. Now, a year or so later, I'm so happy that she his getting more use out of it. We took it outside a few days ago and she did great. I can tell it's a little awkward for her, but it will be great to have it available for the times when I can't walk with her and the harness. Go Abby!<br />
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I think she's a little happy with herself!</div>
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</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-71114103927785213182012-05-07T20:19:00.002-07:002012-05-07T20:19:42.569-07:00Movie NightI love it when these two cuddle together!<br />
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<br />Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-60948854844440160892012-02-20T20:31:00.002-08:002012-02-20T20:34:33.151-08:00What are we dealing with?<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: left;">Abby has been on seizure meds for 2 years now. We have gone back and forth about these meds because girls with Rett Syndrome have so many episodes that mimic seizure activity and we have never confirmed one on an EEG. She may have several a day for a week and then not have another one for weeks. The minute we schedule an EEG, she will go seizure free until it is cancelled. Seriously, it happens every time. Abby had an appointment at the Rett Clinic last month, where I showed Dr. Percy a video of the events that she has been having for about the last 6 months (which are different from the seizures that she was initially put on medication for). She was initially put on Keppra when she had a lot of seizures during an illness. She was fighting off a stomach bug and sinus problems. She hasn't had any seizures like that since then. Dr. P discussed the possibility that those true seizures were triggered by her illness, but that these recent episodes are not seizures. They could be Rett spells, other neurological events that shouldn't respond to seizure meds. If so, we need to consider if she needs to be on a daily medication. This comes on the heels of her having the best day ever when I forgot to give her her morning Keppra dose. Coincidence? I don't know. I didn't really think she was having any side affects, but she was so alert and vocal on that day that I am now questioning that assumption. We really just need to confirm one of the episodes on an EEG. I'm so tired of not knowing what the heck we are dealing with. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">We had an EEG scheduled last week. Of course, she had an all time record without a seizure. We ended up canceling the appointment at the last minute. She had three weeks without anything that resembled a seizure...until tonight. It was scary. I think part of the problem was that she was congested, which made the vomiting and lack of breathing that usually accompanies these events even more problematic. I hate being so helpless when she is struggling to breath. Ugh. I hate Rett Syndrome. The only positive that I can find is that she is very relaxed afterwards. It was right before bed time, so she took a bath and went right to sleep. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I don't know if it's better for these events to be true seizures or Rett spells. If they are seizures, there might be a better chance of controlling them. That would mean she would continue/increase the meds and the side affects that go with them. If they are other neurological events that aren't true seizures, she won't be taking meds, but there will be little chance of controlling them. It seems like almost all of Abby's friends with Rett are struggling with seizures right now. They are just a nightmare. We need a more effective treatment for seizures for our girls very soon! </div><div class="separator" style="clear: both; text-align: left;"><br />
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</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com5tag:blogger.com,1999:blog-2396075454926189031.post-56026118165574408402012-02-12T18:55:00.000-08:002012-02-12T18:57:03.585-08:00The DanceThis weekend, Abby's school had a Father/Daughter dance. It was a fundraiser for a sensory garden to be built on the outside of Abby's classroom. That will be awesome. She was scheduled to be having an overnight EEG at that time, but it was cancelled a few days before, so she got to go to the dance! Yay! She and Wes had a wonderful time. I worked serving the girls and dads ice cream, which worked out nicely because I was able to get a few photos.<br />
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<div style="text-align: center;">They are a pretty stylish couple, I must say</div><div style="text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg13WF3K_jylNqHJXB0P7vIC9gosgyvvxZVeHMZ76pCRL0ybwomsdkdKuNYXCW70wn_wtJhHwe_Za8ygPveSgEXbxjaBXMIW2yws5US0uA6ZagqFVTw-LYmOlOmM5lnx6z6_K4ijgR7sUw/s1600/photo+copy+7.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg13WF3K_jylNqHJXB0P7vIC9gosgyvvxZVeHMZ76pCRL0ybwomsdkdKuNYXCW70wn_wtJhHwe_Za8ygPveSgEXbxjaBXMIW2yws5US0uA6ZagqFVTw-LYmOlOmM5lnx6z6_K4ijgR7sUw/s320/photo+copy+7.JPG" width="239" /></a></div><div class="separator" style="clear: both; text-align: center;">But she needed some help, too. Those shoes are pretty cute, but maybe not the most sensible choice....but they are so cute. </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/AVvXsEj30R6uo3FY1lcZkFJN2OqH1zdRiPfPKYSruQAgBfKEG59or1RzYIEkWPm1M8EcK86GxV-vXDzpeiV1w7-vZ91JbxLMdwGxkvqJJ6gYnJUnJvB1WsjkDWld_hn72_MiNkuB6o8lduOzWP8/s1600/photo+copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj30R6uo3FY1lcZkFJN2OqH1zdRiPfPKYSruQAgBfKEG59or1RzYIEkWPm1M8EcK86GxV-vXDzpeiV1w7-vZ91JbxLMdwGxkvqJJ6gYnJUnJvB1WsjkDWld_hn72_MiNkuB6o8lduOzWP8/s320/photo+copy.JPG" width="239" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div style="text-align: center;">Uh oh. This is one of her anxious faces. If she could tell you, I'm thinking she would say something like this, "I'm breathing crazy and I can't really get my mouth to swallow or close. Ugh." I was thinking, with the loud music and all the excitement, she would be anxious all night. I was pleasantly surprised that her anxiety was short lived.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKZJ4NHlJiEjp71-YGVKRdbR3-tzb69SK_VLdD6Vs_IfESUXHC1_LbVTo2n3vaiqHeSo6TRhwRMYNXhh6H7Y5USzrCD2fG8sKpMxRjljMnM0AK6f5L4PcHsisZtHD_tBjhkWXzeptd788/s1600/photo+copy+6.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKZJ4NHlJiEjp71-YGVKRdbR3-tzb69SK_VLdD6Vs_IfESUXHC1_LbVTo2n3vaiqHeSo6TRhwRMYNXhh6H7Y5USzrCD2fG8sKpMxRjljMnM0AK6f5L4PcHsisZtHD_tBjhkWXzeptd788/s320/photo+copy+6.JPG" width="239" /></a></div><div style="text-align: center;">They had a booth set up for manicures, face painting, and hair color spraying (among other things). Abby did all three. All pink, of course. After getting out of bed the next day, her sheet and pillow case were a pink glittery mess. I love it!</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-73086463231901536912012-02-08T19:44:00.000-08:002012-02-08T19:44:21.892-08:00A donation of epic proportions!Since Abby's diagnosis, our family and friends have participated in an annual strollathon to raise money for the <a href="http://rettsyndrome.org/">International Rett Syndrome Foundation</a>. We've used social media to gain support and raise money for our cause. Wes works as a multimedia artist for UPS, and also does freelance work making animations and has written a couple of books to instruct others how to use some of the software that he uses. Most of the contacts that he has in his profession are not local, often they are all over the country, people he has never met. He decided that even though he usually posts only information about his profession on these forums, he did share a little about Abby and the strollathon a couple of years ago. I am so glad he did. This 3D community has been very generous, raising thousands of dollars towards our team each year. Artists gave and companies encouraged their employees to help our cause. One company in particular, <a href="http://luxology.com/">Luxology</a>, has been a huge supported of Team Abby. We are humbled by their generosity. <div><br />
</div><div>Last month, Wes read on a forum that Luxology was running a special sale. They were discounting one of their software programs, and also donating half of the proceeds to IRSF! We couldn't believe it. It was a great sale, making the software half off. Wes even bought it himself. I later got an email from IRSF stating that they received a check for $60,000.00!!! That amount will be more than enough to fund a research grant for an entire year. That could make such a difference. Thank you <a href="http://luxology.com/">Luxology</a>! </div><div><br />
</div><div>Check out their website to learn a little about what they do at <a href="http://luxology.com/">luxology.com</a></div><div><br />
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</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-52035835880625138522012-01-27T20:26:00.000-08:002012-01-27T20:28:22.978-08:00It's here!After a year of waiting, Abby finally has her Eco2! We are all so excited. We were able to set it up last weekend with a mount that we are borrowing (until we get one of our own). Abby has spent a lot of time exploring and having fun with it. It has been a long time since she had the trial, so she's relearning where everything is on the device and figuring it out, which is going to be an ongoing process. She's learning a new language using symbols and accession them with her eye gaze. It's not simple, but she's smart and very motivated. We know she can do it! <br />
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We're already learning a few new things about her. <br />
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1. She's a bit of a hypochondriac. "I don't feel well" and "I am not feeling well" are two of her favorite phrases, even when she is smiling and laughing. Sometimes, it is followed by "that is silly", so I think she's just being funny. The symbol is a little green face, which is pretty silly. I can see why she keeps looking at it:) Funny girl. <br />
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2. She wants a drink ALL the time. She is getting her point across. "I feel thirsty", "I would like some juice", "I need a drink" <br />
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3. It takes even longer for her to answer a question than I thought. When she asks for something that I'm not sure she intended to say, I sometimes ask her if she meant to request it. She might say that she needs to use the bathroom right after she just went. It's really easy to say something on the device unintentionally, so I might ask her if she does need to use the restroom. It is amazing how long it takes for her to answer. She will look at yes and no, dwelling on each of them but not selecting them, looks away from the device completely, all before selecting her answer. Darn apraxia. I don't make a habit of asking her lots of questions for this reason-I don't want to stress her out. Sometimes she won't even answer me at all, which is fine. I'm learning so much about her by just listening to what she wants to say. <br />
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4. She tells me "I like to go shopping" a lot. This was news to me, but good to know. I think we should do a little shopping this weekend to celebrate her passion. <br />
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And then there are those things that we already knew, but it's awesome that she can show us in a whole new way!<br />
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1. She likes the color pink, likes to go to school, and is five years old. She likes to tell me about it a lot.<br />
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2. She's funny. Forever, I have been telling Abby to use her eyes to show me what she wants. When she eats, she looks at the item that she wants. So naturally, even with her computer, she still looks at the snack rather than the computer. I don't want her to lose that, but I still model how she could request more food/drink with her talker. Earlier today, she looked so closely at her juice box that she nearly knocked it over with her nose, then looked at the computer, then gives me a look like "I don't know how much more clear I could be right now". Of course she looks at me over the top of her glasses, which is hilarious anyway. She cracks me up.<br />
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I am so happy for her. She lit up today when we brought it to school today for the first time. They were just as excited, which also makes me happy. I can't even tell you how great it was to leave her classroom with her talking to her teacher. She was asking for a drink of water. She was thirsty....and she could tell us!! Amazing.<br />
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I found <a href="http://www.kvue.com/home/Girl-Scout-with-Rett-Syndrome-finds-voice-through-technology-137822303.html">this news story</a> to be so motivating. This little girl with Rett Syndrome is using her eye gaze device to help sell Girl Scout cookies with the rest of her Troop. How cool is that? This is going to open lots of doors for miss Abby!Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-9403594069009929772012-01-05T18:14:00.000-08:002012-01-05T18:14:30.606-08:00Not again!<div><div class="separator" style="clear: both; text-align: center;"><br />
</div>If you're going to have a cast, it might as well be pretty! Abby was fit for a cast on her left wrist today. Unfortunately, she had another fall that left her with a small buckle fracture in her wrist. As it turns out, unsteadiness, non-existent safety reflexes, lack of hand function, and weak bones are not an ideal combination. I haven't really had any good ideas from the doctors to prevent this from happening again, but we go to the Rett Clinic in a couple of weeks, so hopefully they can help us out. It doesn't seem to be causing her much pain, though, and she is very pleased with all the attention that her new bling it getting her. <br />
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Just last week, Wes mentioned that he was going to ban the use of glitter in our house. I might have used to excessively with the kids over the holidays...maybe. But a ban on glitter?? That's crazy, especially with a 5-year-old girl in the house. When the nurse asked if she wanted glitter on her cast, Abby laughed out loud. Funny girl. Everything is prettier with glitter.</div><div><br />
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</div><div></div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com3tag:blogger.com,1999:blog-2396075454926189031.post-2709906304218487582012-01-05T18:13:00.000-08:002012-01-05T18:13:10.987-08:00Happy ChristmasAbby was very happy on Christmas morning. Despite the seizures that were making her tired and the inability to play with toys that she would no doubt enjoy, and her inability to express herself vocally, she was happy. Isn't that amazing? I was so worried that she would be sad because she couldn't open presents or play with her toys, but that just wasn't the case.<br />
<div style="text-align: center;"><a href="http://3.bp.blogspot.com/-sZKAeouYUq0/TwZSkWO1sxI/AAAAAAAAAjk/DRivshQzDbI/s1600/photo+copy+11.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-sZKAeouYUq0/TwZSkWO1sxI/AAAAAAAAAjk/DRivshQzDbI/s320/photo+copy+11.JPG" width="240" /></a></div><div><br />
</div><div>I lost a lot of sleep over the past few weeks upset about the fact that Abby can't play with the toys that other girls her age can play with. Shopping for Christmas should be fun, but its just so hard to find things that I think Abby would like, things that she can use her hands to play with, but that won't make her feel like a baby. I left the toy store on the verge of tears with frustration more that once. It's been the same every year since her diagnosis...and birthdays. Sometimes they are just reminders of what she would be doing had she not been born with Rett Syndrome. Are parents of kids with special needs always haunted by the dreams they once had for their child? </div><div><br />
</div><div>I am realizing now that, thankfully, this is my issue and not Abby's. She was just as happy as any kid I have seen on Christmas morning. No, she didn't tear open any packages, but she was laughing at her gifts and loving them just the same. She didn't say "Merry Christmas", but she lit up when we opened the gift that she made for us at school. It is the same case with her birthday. I stress about how to make it special for her with her limited ability to participate, but no matter what we do she always has a huge smile on her face. Regardless of how we celebrate, she likes the attention from family and friends. That's what really means something to her. I'm sure she likes the gifts, too, but they don't mean as much to her as they do to other kids. They can't really provide her a lot of entertainment. <br />
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</div><div>I don't quite understand how it is that she isn't more frustrated than she is. How can she not be upset that Logan talks nonstop and she just has to listen? I don't understand, but I know that she is in a better place with her abilities than most of us. She went through a phase a couple of years ago when she did get frustrated a lot more than she does now. Losing the little hand use she had was tough. Biting and yelling were the norm. But most of the time, she really seems to be wonderfully content. Seeing her face all these challenges with a smile gives me strength. If I could be a little more like her in the face of hardship, that would be a wonderful thing. </div><div><br />
</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com3tag:blogger.com,1999:blog-2396075454926189031.post-19254189543721250402011-12-13T08:31:00.000-08:002011-12-13T08:31:47.411-08:00School days..<div class="separator" style="clear: both; text-align: left;">Abby's teacher emailed me this picture of Abby and classmate the other day. Aren't' they adorable? </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/AVvXsEiC6JjO7PICzOkK7HPyacUhCYyT07AFxfZJHeFta8BVNBlOFe0n5vkyi-Y4J4kFAh28ZEPfdCI4q4swAy97tdiNhK4pfOoET1-cQcZmHFUuPBSIvLg3FgjCVG7ZDAc0eLRik9S1TutbUyE/s1600/100_1632.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC6JjO7PICzOkK7HPyacUhCYyT07AFxfZJHeFta8BVNBlOFe0n5vkyi-Y4J4kFAh28ZEPfdCI4q4swAy97tdiNhK4pfOoET1-cQcZmHFUuPBSIvLg3FgjCVG7ZDAc0eLRik9S1TutbUyE/s320/100_1632.JPG" width="320" /></a></div><br />
I am so relieved that Abby is doing so well at school. First of all, she is just so excited and happy to be there. We run into kids all the time who say "hi" to her when we are out and about. It makes her giggle that she has so many friends of her own. We have been so blessed that she has always been placed with wonderful teachers who have her best interest at heart. I think she will be even more exciting when she has a communication device that will allow her to participate and communicate at a whole new level. After the holidays, PRC (the company supplying Abby's communication device) will be doing a training for Wes, myself, her therapists, and her teachers. That's a lot of people committed to helping Abby be successful with this device:) I think it will be coming SOON! That would be the best Christmas present ever!!! Well, not really. The best Christmas present ever would be a cure for Rett Syndrome, but a communication device would be pretty darn wonderful!Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com0tag:blogger.com,1999:blog-2396075454926189031.post-78557940134305504702011-11-28T20:51:00.000-08:002011-11-28T20:51:14.103-08:00I know it's been a while...<div>I haven't had much time to blog lately, but I do have a few photos to share. Abby has been doing well, just the usual Rett Syndrome stuff. We are still playing the waiting game on her device, but we're getting closer. We've increased her evening seizure meds quite a bit. Time will tell if the increase stops her morning episodes. We had a visit with our local neuro a few weeks ago and talked a lot about the current IGF-1 Trial. It's so exciting that doctors (not in the RS loop) are excited and knowledgable about what it happening at Boston Children's. He said that it's pretty "mind blowing"! The possibilities give me chills. </div><div><br />
</div><div>Abby is loving school, which is just wonderful. The best part is that the feeling is mutual with all her teachers and friends. They are crazy about her! She has been welcomed with open arms by everyone. I was so worried that she would have a hard time making friends, but that is just not a problem. Everyone knows Abby. Given the huge barriers that prevent people from being able to communicate Abby, I am so grateful for the special connections she is making at school. What a blessing! </div><div><br />
</div><div>This is a photo from her first field trip. She had a blast picking out a pumpkin and taking a hayride. </div><div> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfD0uOu6fl0Q1sqoVI8qbgorODqn8cYyJZchXCf9ggYkQVEwPsKAS7kRW8Q2mDH6QQ3h3jRGWAiUZd2jMWpCZmkx7D4NlAeREqGRTdB2ib2S64CFMA891owHY0uD-5EgN5-yNBbDJe8Ow/s1600/IMG_5969.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfD0uOu6fl0Q1sqoVI8qbgorODqn8cYyJZchXCf9ggYkQVEwPsKAS7kRW8Q2mDH6QQ3h3jRGWAiUZd2jMWpCZmkx7D4NlAeREqGRTdB2ib2S64CFMA891owHY0uD-5EgN5-yNBbDJe8Ow/s320/IMG_5969.jpg" style="cursor: move;" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: left;">Abby and Logan were my little Supers for Halloween. Logan is addicted to sweets, so Halloween was just fantastic for him. Abby did much better this year, walking a great deal around the neighborhood. She, too, had her fair share of candy. I had two choices this year regarding Abby and trick-or-treating. If we pushed her in her chair, she could use a switch to say "trick-or-treat". We have done that in the past, and she really likes it. However, she also likes to walk (with help, of course) and that would allow her to go closer to the doors to get the candy herself. In the end, we let her walk without the switch. It wore her out, but I think she had fun. </div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: left;">A couple of weeks ago, Abby participated in an annual fashion show organized by the center where she receives some of her therapies. There were over 70 kiddos with special needs that participated in this year's show. Strutting out on the stage in their new digs makes everyone smile. It's a fun event. Abby had two escorts that made her feel like a princess. </div><div class="separator" style="clear: both; text-align: left;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVHy8eZudS02ZIk7duCcnEmWZZEe18V157GnxNXIuboWB9AruVXTH028PSdb22kV5ZSIF-cpXo9X003j0rwsJ-Sa0kvmH3Y1lMK4Gmc4ktgmIhknHoAubAcB2nCCaVwI45DTfXpZqBesc/s1600/IMG_0102.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVHy8eZudS02ZIk7duCcnEmWZZEe18V157GnxNXIuboWB9AruVXTH028PSdb22kV5ZSIF-cpXo9X003j0rwsJ-Sa0kvmH3Y1lMK4Gmc4ktgmIhknHoAubAcB2nCCaVwI45DTfXpZqBesc/s320/IMG_0102.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I'm surprised I don't have any photos from Thanksgiving...not even one. I guess I was too busy eating, and keeping up with kids, and then eating some more. Anyhow, I hope you all had a very Happy Thanksgiving! We have the trees up and are gearing up for Christmas. Logan keeps asking me if Jesus is going to be here for his birthday party. I would love some help answering that one. I have yet to give him a satisfactory answer to the whole "but where are the pilgrims now?" question. </div><div class="separator" style="clear: both; text-align: center;"><br />
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</div>Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com2tag:blogger.com,1999:blog-2396075454926189031.post-36330276334959710122011-10-18T21:49:00.000-07:002011-10-18T21:49:41.820-07:00Abby stayed home from school today so that I could monitor her seizures. She had been having one every morning last week, and then they increased over the weekend. On Monday, she vomited at school. When she has an increase in seizure activity, it isn't unusual for her to vomit. Also, if she was getting some sort of stomach bug, she would have seizures. That makes it difficult to determine the cause, if there even is one. She seems to be in a pattern where she has about 3-4 weeks without seizures and then she has a week or so with daily seizures. I expected to spend the day at home, recording anything unusual on my phone so that I can show it to her neurologist later this month. <br />
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I had my phone ready to record Rett episodes all day, but nothing crazy happened. Instead, I got a photo of Abby not doing anything too crazy at all, which was nice. Well, now that I look at it, her lips aren't exactly pink, but that's okay. It was a nice day. Tomorrow will tell if this seizure "phase" is over. <br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7JC-f0rPSsRFWiYDjg2lAUExV3_d4X_aPyd_6JCw8c5waq-FNSeT1_aQrl-luFWH46KPtUIVXNgXp1gpNDfMkBJWf5dtSED2dtNzG23DuNddKhRIIh-bVYku4Tc-rfxO2LGd-CLtVw5E/s1600/photo+copy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7JC-f0rPSsRFWiYDjg2lAUExV3_d4X_aPyd_6JCw8c5waq-FNSeT1_aQrl-luFWH46KPtUIVXNgXp1gpNDfMkBJWf5dtSED2dtNzG23DuNddKhRIIh-bVYku4Tc-rfxO2LGd-CLtVw5E/s320/photo+copy.JPG" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>If anyone has any insight into these seizure patterns, I would love to hear it. I don't think there is a trigger. She does well for several weeks, then she starts having a seizure or so every day for 4-7 days. Those seizures are all short, about 20 seconds. She stops breathing, lips turn blue, non responsive, eyes roll back or stare, her tongue is doing something weird (i can't really tell what, but it sounds like something is happening in her mouth), and she sometimes vomits. When it's over, she is out of sorts for about 15 minutes (very jumpy and limps are flailing) and then she sleeps for about 30 minutes. When she wakes, she is back to normal. I haven't caught these episodes on an eeg. Has anyone's daughter experienced similar episodes? We've increased her Keppra, but they still happen. We have also given her Klonopin during the week when she has these episodes, but it didn't stop them either. I think we may need to get them on an eeg before attempting to increase meds again, or just deal with them. She sees the doctor in a couple weeks. <br />
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My post was going to be about how nice the day was because I was expecting to have to deal with seizures, but instead we spent the day hanging out and later listening to a webinar about the IGF-1 trial. I got a little sidetracked. Even though she didn't have any seizures today, they seem to still be on my mind.Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com0tag:blogger.com,1999:blog-2396075454926189031.post-28551388861331570082011-10-14T20:12:00.000-07:002011-10-14T20:12:31.416-07:00Device Update<div class="separator" style="clear: both; text-align: left;"><br />
</div>The process of getting an eye gaze device for Abby has been painfully long, but we are getting very close... I think. First, we had to get the trial approved by both our insurance and secondary insurance. That took forever. It took a while to actually trial all the devices. Now we have made our decision and we're again waiting for approval for the purchase of the device. Yesterday, I am happy to say, we received our approval from our primary insurance company!!! It should have been a given that they would approve the purchase since they already approved the trial, but I was still holding my breath that it would work out. As it stands now, we are just waiting on approval from her secondary. That was the longest wait for the approval for the trial, but at least it is the last part of the process. As soon as they approve, which they should since they already approved the trial (and it was successful), we will get the device. I hope that PRC has a device available and we don't have to wait a long time to get one shipped. <br />
<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQvhHCutXFB79I72fzriwO2XIjYM-WZOTpzQTstwXOykGW33p-OVXBmHb1FfRlSqmX3VVPpBnql7zOdRhOvv-h7m0Xt2cheRc79WgVw1bqgTmkptmFPFYJnE7RN481KK_W8oXDg-fLZ9M/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQvhHCutXFB79I72fzriwO2XIjYM-WZOTpzQTstwXOykGW33p-OVXBmHb1FfRlSqmX3VVPpBnql7zOdRhOvv-h7m0Xt2cheRc79WgVw1bqgTmkptmFPFYJnE7RN481KK_W8oXDg-fLZ9M/s320/photo.JPG" style="cursor: move;" width="240" /></a></div>Now that we have decided on the device, we made a low tech communication system using the symbols that will be on her talker. It is not a perfect system, but it will keep her familiar with the symbols while we are waiting on the device, and it will give her a way to communicate that is similar to the talker. Even when she gets her talker, she will need a low tech way to express herself using the same symbols for those times when her talker isn't working properly, or if we don't have it with us. This is the first time we have used these particular symbols for anything other than the eye gaze device trial. When I showed it to her, she looked super intensely at the "home screen" symbols. I think she was expecting some sort of voice output (other than me) when she looked at the symbols. I'm sorry Abby, but we're working on it!Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com1tag:blogger.com,1999:blog-2396075454926189031.post-49101686027668866012011-10-13T19:46:00.000-07:002011-10-13T19:46:23.774-07:00Laughing is better than crying, but...<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzmWw-PlHEnsIb6a8FJJMMFuG1Kdydqt0R86SJ6RgxBxao2F79-m5AIUmWzWTXRIYgiInD81z89H2dZ_nnS' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br />
sleeping is even better than laughing (in the middle of the night, anyway). I love to hear her laugh, but I don't love <i>this</i> laugh as much as her real laugh. This laugh is the anxiety laugh. It happened first when we gave her Claritin when she was 2. We thought the meds would make her drowsy. It didn't. It made her laugh hysterically for hours. It was funny, but really weird. She was out of control. Since then, she has nighttime laughing a lot. Most nights she wakes up laughing once or twice, sometimes for a few minutes, sometimes up to an hour. I guess this is a Rett thing. She is in her room in the dark in the middle of the night laughing hysterically. I like to hear her laugh, I really do. We've had lots of nights of crying, and this is definitely better, but I would rather she be sleeping peacefully. Better yet, if she is laughing, I want to know what is so funny. Then, I could laugh too.Ann Mariehttp://www.blogger.com/profile/00363526402404082752noreply@blogger.com5