tag:blogger.com,1999:blog-29721250050006279332024-03-06T00:18:43.437-07:00My Silent Angel's FightWhitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.comBlogger110125tag:blogger.com,1999:blog-2972125005000627933.post-25825494283108095302015-11-16T08:01:00.000-07:002015-11-16T08:01:25.859-07:00Speech TrainingFor those that aren't aware, we flew in a specialist, Susan, for 2 days to work with Oaklynn. She has worked with over 300 Rett girls to teach them how to communicate. Also teaching them how to read and write as well as teaching the parents and school the best way to teach us and help us learn.<br />
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It was 2 of the best days ever. It was much better than I could have ever expected. Watching Oaklynn have full conversations was amazing! I can't even put into words everything we got out of it so here are some videos.<br />
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Before this video started Oaklynn's at home Occupational Therapist, Renee, had just walked in (that is who you hear talking). Susan wanted to have Oaklynn talk about the music they just listened to but as you'll see, Oaklynn takes over her device and decides she wants to tell Renee about something else. You'll also notice that there are times when Susan touches her device, it talks. She is modeling words for Oaklynn. So when you see her hand at the device, Susan is modeling but all other times, Oaklynn is talking. Pay attention to her eyes and her smile. This is what I mean when I say that Oaklynn speaks with her eyes.<br />
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We later realized that Oaklynn was saying "I'm Sorry" at the end of the video because Susan had the wrong book. She was telling Susan she was sorry that she chose the wrong book, lol.<br />
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This next video continues with the conversation. You can see how excited she gets in this video because she wants so bad to tell Renee about the story.You'll also notice that because of her apraxia, she has moments where she needs extra time to answer. She knows what she wants to say but can't get her body to respond. So she needs extra time to work through things and then comes back and is able to respond.<br />
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Next video continues with the conversation...</div>
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That was one of my favorite conversations from those two days. She was so excited about the book and did so well explaining it to Renee.</div>
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Now you'll notice in this next set of videos, Susan places her computer in front of the eye gaze. She took it away so Oaklynn could have a break (it's a lot of work to use your eyes to talk). So now she is going to work on Oaklynn using her eyes to communicate without her talker because she wont have it when we are out and about. </div>
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This next video continues with the conversation. You'll notice that when she makes eye contact with Susan she is responding with a "YES" and when she turns her head away and is responding with a "NO".</div>
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She was so quick at responding, it was amazing! </div>
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We were so proud of her and how hard she was working. She was so excited to use her talker and her new pages. The next day we worked at the school. I will post video taken while working at the school in another post.</div>
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<br />Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com0tag:blogger.com,1999:blog-2972125005000627933.post-53175176945394027952015-05-18T12:41:00.001-07:002015-05-18T12:41:07.397-07:00Another attempt at normalcyThis post is from my good friend Shelley. She is a Rett mom to her beautiful daughter McKenna. This post brought me to tears as she describes it so well. The pain and heartache knowing that nothing will ever be "normal". Thanks for sharing with us Shelley!<br />
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; line-height: 19.3199996948242px; text-align: left;">A letter to the mom in the dressing room next to me...</span></div>
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, 'lucida grande', sans-serif; line-height: 19.3199996948242px; text-align: left;">Today we both had a special day... Shopping for prom dresses with our senior daughters. Maybe it was rude, but I couldn't help but listen in on your conversation. I heard you and your daughter laughing. I could hear the love in your voice when you teased her about the slit in the dress being a little too high and the neckline being a little too low. I heard her call you mom, but I knew you were more like friends. I could even hear your oh so subtle gasp when she walked out in that form fitting black dress covered with sequins. I'm not surprised... I think I gasped too. She looked incredible! As much as I wish it weren't true, form fitting dresses and round tummies with feeding tubes do not go together. So the dresses we were trying on were big... gypsy worthy big! I was crouched on the floor trying to keep my daughter from falling over because her scoliosis keeps her from sitting up straight when she's tired. I could see you and the proud way you looked at your daughter. I watched you and your daughter through the gap in the curtain. I envied you. I wondered if you ever think about how very lucky you are? You see, even though it was a special day, it was also a very emotional day for me. Another milestone event that I am losing out on. I will admit, shopping during the dinner hour on a Wednesday night was probably not one of my best ideas. While your daughter twirled in front of mirrors, my daughter sat on the floor of the dressing room rubbing her eyes and falling over. I put huge tulle dresses over her head, but then I had to attempt to stand her up if I had any chance of getting the back zipped up. I had to keep her towel close by because taffeta is not very forgiving when it comes to drool. I pretended I was having fun both for my daughter's sake and for anyone listening in on our one-sided conversation. If they had any pity for me, surely my over the top excitement and fake smile should dispel any myths. I narrowed it down to two dresses and even though I held both dresses up for my daughter to demonstrate her eye gaze skills, she wasn't interested in the least. I picked the white and aqua dress, not because I liked it the best but because I thought maybe, just maybe, if my daughter could talk, or walk, or use her eye gaze skills... That would be the dress she would choose. I also used my infallible decision making method of eeny, meeny, miney, moe... I figured I had a 50/50 chance of getting it right, unless she didn't like either. Who knows, maybe she doesn't even want to go to prom. I heard you joking with your daughter about doing extra babysitting jobs to help pay for the dress. As I handed the cashier my credit card, I was more than willing to pay an absorbent amount because I reminded myself that I'd never have to buy a wedding dress. I drove home, fed my daughter, and got her ready for bed. The dress is still in a plastic bag hanging in my van. The dress... Another attempt at normalcy. Another reminder of how much has been taken away.</span><br />
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<br />Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-56142915571874058942015-02-24T09:57:00.002-07:002015-02-24T11:21:11.860-07:00Anniversary<div style="text-align: center;">
Today is our anniversary of D-day (diagnosis day). It marks 3 years since we have had the diagnosis of Rett Syndrome. I remember it all too well. The pain, the heartache, the grief, and the feeling that I couldn't breathe. Today is a day to reminisce on the things she use to be able to do. Not to grieve, but to have hope that a cure will come and she will regain all these skills again. The waving, holding things, feeding herself, pulling to stand, crawling, walking and talking.</div>
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A year after she was diagnosed, I ran my first half marathon ON her diagnosis day in honor of her. </div>
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The next year I couldn't run as I was pregnant. So my friend ran in honor of her daughter, Melia, and my Oaklynn.</div>
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This year I wasn't able to run or even make it to the run. So I want to find another way to make this day a positive day instead of a negative day. I would love to turn this D-Day from a "Diagnosis Day" into a "Donation Day"! If you can, please PLEASE donate to Rett Syndrome Research in honor of Oaklynn. I can't even stress how close we are to a cure. Any and all amounts are appreciated... even if it is $5! Please share our page and ask others to help me make today a positive day for us. Go to <a href="http://www.gp2c.org/Oaklynn">www.GP2C.org/Oaklynn</a> and donate there. Thank you all for all your support and love and for helping me change this day for the better.</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-71900687913823780362015-01-13T17:37:00.000-07:002015-01-13T17:37:00.262-07:00The second wave of griefIt's been hard lately... really hard. Oaklynn use to be a typical child. She use to walk, talk, feed herself, play with her toys... do everything a typical child could do. Rett Syndrome hit, and she lost all of that. But to me, she was still the same Oaklynn. She still had her fun, silly personality and her witty humor. She still looked like a typical child until you got to know her a little more. Then you realized she had special needs.<br />
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Lately, it is not like that. Rett Syndrome has trapped her inside her body so bad that some days, I don't see my funny little girl. I see a little girl who screams, yells, pulls her hair, has seizures, can't control her body... and it's so hard. She has so much medical equipment that she now looks like a special needs child at first glance. Don't get me wrong, it's not a bad thing to look like a special needs child. My daughter didn't come to me as a special needs child, she came as a typical child. I got to see her as a typical child. I got to see her sit and walk with no medical equipment. So to have her change so much and now see her be surrounded by some kind of equipment at all times, it's hard... really hard! Some days I feel like I got the Rett Syndrome diagnosis all over again. The emotion and heartache hits me really hard lately. I find myself of the verge of tears, or crying in public, a lot lately. I think about those days where my little girl had control of her body and her words. I look at her now and see her yelling to get out. Trying so hard to break free of this broken body and be a little girl again. It's been so hard having so many Rett girls passing away and knowing that if a cure doesn't come soon, that will be her.<br />
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I often wish I was warned about this second wave of grief. When she was diagnosed, she hadn't completely regressed. The grief was of what we would loose and what would happen to our daughter. I have just hit the second wave. The part where the regression is over and she has lost everything. That part where we are now living what we feared when we got the diagnosis. The anxiety, seizures, scoliosis, breath holding (where she passes out), GI problems, constipation, G-tube, tremors, screaming fits.... etc. It breaks my heart in a million pieces and I hate going through this grief all over again.<br />
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I am so grateful to the friends who have reached out to me to tell me they are thinking about me. These people have no clue what I have been going through but they felt the need to reach out to me and I am so appreciative of them in my life right now. This diagnosis is hard and this life is harder than I ever imagined.<br />
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I do have to say that I am so incredibly grateful for Oaklynn in my life, she has taught me so much and she is one of the sweetest little girls I know. I wouldn't give her up for anything in this world.<br />
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I am often contacted by moms whose daughters are recently diagnosed and have found me due to my blog. I want them to know about this second wave of grief as I wish I did. So to them:<br />
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You will grieve now... a lot! You will be scared of what is to come and you will be so incredibly sad. You will come to terms with Rett Syndrome and that it will be your life. Just know that most likely, it will hit you again (and maybe even a couple more times). When the regression is over and she is trapped inside her body, you will grieve all over again. If this happens, I am here for you. I know how you feel. I wish I could throw my arms around you and cry along with you. Rett Syndrome sucks, but you aren't alone.<br />
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Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com4tag:blogger.com,1999:blog-2972125005000627933.post-74236010485300428672014-10-11T21:36:00.000-07:002014-10-11T21:36:12.168-07:00Blue Sky Girls Speech<div style="background-color: white; color: grey; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12px; line-height: 15.3599996566772px; margin-bottom: 1em; margin-top: 1em;">
Today I got to address a large crowd and talk about Rett Syndrome and my view of it as her mom. Here is my speech...</div>
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Good Afternoon. My name is Whitney and I am Oaklynn’s mom. She was diagnosed when she was just 21 months old. That was the hardest day of my life. I didn’t know anything about Rett Syndrome so I got online and I googled it. This is what I came across while researching it.</div>
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Rett Syndrome is a rare genetic neurological disorder that almost exclusively affects 1 in 10,000 females. It strikes at random in early childhood. Most babies with Rett Syndrome seem to develop normally at first, but symptoms surface after 6 months of age. Many girls live into adulthood, requiring total, 24-hour-a-day care. There is no treatment beyond supportive measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures. Symptoms include Loss of speech and motor control, functional hand use replaced by compulsive hand movements, disordered breathing, severe digestive problems including constipation, orthopedic abnormalities including scoliosis and fragile bones, disrupted sleep patterns, extreme anxiety, seizures, impaired cardiac and circulatory function and Parkinson-like tremors. About 50% of individuals affected do not walk.</div>
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I continued to research it and kept coming across the same stuff. Telling me what my daughter will never do. The medical problems she would have. The hardships she would face, how hard my daughter’s life would be and essentially how hard my life was going to be caring for her. It was tough. After reading this I cried for days.</div>
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It wasn't until a week after her diagnosis that I stopped researching Rett Syndrome and decided to stop focusing on what the medical books told me my daughter wouldn't do and start focusing on what she can do and enjoy each and every day I was able to spend with her.</div>
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I remember when she was about 2 years old I sat on the floor with her and decided to have a conversation with her. Knowing she couldn't talk and wasn't going to talk back to me, I still decided to talk to her and ask her questions. As I started talking to her I saw a sparkle in her eyes. I noticed something I never saw before. She was actually talking to me with her eyes. Her expressions changed and there was this sparkle I had never seen before. As time went on I came to realize what an inspiration she was. She was strong, determined, and happy despite everything she was going through.</div>
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There was so much about her that I found out while being her mom that I didn’t read about online when googling Rett Syndrome. These girls are so amazing. They are strong, courageous, inspirational, and despite everything they go through, they still put a beautiful smile on their faces. They are just like any girl their age, just trapped inside a broken body.</div>
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I know that one day we will have a cure. We will gather in this same spot and these girls will be running up these stairs, standing where I am standing, holding this microphone and thanking each and every one of you for your support, encouragement and for believing in them</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com0tag:blogger.com,1999:blog-2972125005000627933.post-5296261786489078422014-08-27T13:57:00.000-07:002014-08-27T13:57:53.069-07:00New SiblingWe wanted to introduce our newest addition. Oaklynn loves her little brother and she is such a good big sister!<div class="separator" style="clear: both; text-align: center;">
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Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com2tag:blogger.com,1999:blog-2972125005000627933.post-49552605230672577202014-03-05T09:25:00.000-07:002014-03-05T09:25:20.450-07:00Meeting Clint Black<div style="text-align: center;">
Oaklynn got the chance to meet Clint Black! If you haven't heard of him than you must not listen to country music. He is an awesome singer that I have listened to since I was little. His niece passed away from complications due to Rett Syndrome. He has been supporting and raising awareness for Rett Syndrome ever since. </div>
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A rett mom here in Arizona reached out to his team and asked them if some of us Rett families here in AZ could meet him before his concert and after much convincing, they agreed!</div>
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There were just 6 Rett girls and their parents so it was a nice small group. We all got a chance to take a picture with him and then I got the guts (thanks to my sister Briene) to ask him to hold her. I am so glad I did because I got some great pictures. She reached her back arm up and put it around his neck to give him a hug. He leaned in and hugged her. </div>
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We had so much fun and he was so nice. I wish we could have stayed for the concert though, that would have been fun.</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com0tag:blogger.com,1999:blog-2972125005000627933.post-12183129598278634102014-01-27T20:22:00.003-07:002014-01-27T20:22:43.001-07:00Making Choices<span style="font-family: Arial, Helvetica, sans-serif;">A lot of people have been asking about Oaklynn's eye gaze device. She has the <a href="http://www.tobii.com/assistive-technology/global/products/hardware/tobii-i-series/#.UucdohDn8dU" target="_blank">Tobii I-15</a>. It looks like a regular computer monitor and it has a device on the bottom that tracks her eyes. When she looks at a picture for a certain amount of time, it speaks what she is looking at. She is doing REALLY well at starting to navigate through pages to let us know what she wants and she has only been using it for a couple months.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Just today she woke up from nap at 1:50pm. We usually eat lunch at 2pm but today we had speech therapy at 2pm which meant that she needed to wait to eat until after therapy. The therapist came in and Oaklynn's first word with using her device was, "HI". They then navigated through the device to do some work and learn some more pictures. When Oaklynn was asked if she wanted "more" or to "stop" (doing the current activity they were doing together), Oaklynn responded with, "Eat... Eat". I said, "yes, we should be eating now and you're probably hungry. We will eat as soon as therapy is over." Throughout the session she started not only saying "Eat" but then started saying, "Eat... Hurt... Eat". She was trying to tell us her stomach hurt because she was hungry. I got her a snack to eat during therapy and she smiled right away. Then when therapy was ending Oaklynn said, "drink".</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I was so proud of her because everything was right on cue and so purposeful. She knew what she wanted and wouldn't stop asking until she got it.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Here is a video I took of her using it. I asked her what show she wanted to watch. If you see the blinking lights at the bottom of the device, those are used to track her eyes. She rocks and moves a lot so it can take her a couple minutes before she can make her body still enough to make a choice. This time it took her just under 2 minutes. I shortened the clip to show you just the part where she makes her choice.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">You will notice that I ask her if she wanted Sesame Street after she made the choice. I do this to verify that was what she really wanted. As you can see in the video... it was clearly what she wanted.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I have sat down and used the device before and it is hard work. Using your eyes to navigate through pages and make choice makes you really exhausted! You would think it would be easier than using your fingers to choose things but it is not. I am SOOOO proud of her for all the hard work she does. She is my super star!</span>Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-39754526229871420222013-11-07T20:03:00.000-07:002013-11-07T20:04:41.881-07:00Button panick<span style="font-family: Arial, Helvetica, sans-serif;">I sat Oaklynn down in her "happy chair" to watch some Mickey Mouse in her room before her Occupational Therapist got here. Therapy came and she left Oaklynn in the same chair to work on eating and playing with some other things. About 40 minutes into therapy, the OT stood her up to move her to another position and when she stood her up, she noticed that a button (g-tube) was sitting on her chair. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKZhLpcdE9E9a5SXEimxGXXN1nsn-7_e9NLP00h_SwR2_HTtwzLoe_cHZzTC5ZlfJn84rDbir1vzPtuem3ygieYi-kRyjzZGgsKD92oV_6aIhFlN3P0x1tUcHECftM1xFIQV3C4i0Q7v4/s1600/Mic-Key+button.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" height="293" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKZhLpcdE9E9a5SXEimxGXXN1nsn-7_e9NLP00h_SwR2_HTtwzLoe_cHZzTC5ZlfJn84rDbir1vzPtuem3ygieYi-kRyjzZGgsKD92oV_6aIhFlN3P0x1tUcHECftM1xFIQV3C4i0Q7v4/s320/Mic-Key+button.jpg" width="320" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We have an extra one that a friend gave us that was put in a baby doll so Oaklynn could have a doll just like her. So when she grabbed it I just figured it was the baby dolls. Then I thought that we should check her stomach just to make sure. When lifting up her shirt we noticed that hers was missing!! She just had this little hole in her stomach and NOTHING occupying it. I started to panic. Luckily the OT was there so I tried not to look too panicked on the outside but my heart was beating SUPER fast. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">When you get the surgery, they warn you about how serious it is if the button falls out and how you have to immediately stick the replacement back in quickly so it doesn't start to close up. So I am in panic not knowing how long her button has been out of her stomach since she had been sitting in that seat for quite a while. In my mind I am thinking I am going to have to head to the ER and get the surgery done again. I asked the OT to lay her flat on the ground and watch her while I went to get her another button. I grabbed everything I needed to change her button and ran back into her room. I got the button ready to put into her stomach. I closed my eyes and took a DEEP breath to try to relax myself (kinda also said a silent prayer at that same time). I slowly put the button into her stomach and she was tightening her stomach so I was having a hard time getting past her muscles and into her stomach. I kept wiggling it around and in it slipped!! I looked up at the OT with big excited eyes and said, "It's in!". I smiled, filled it with water and sat her back up. Of course Oaklynn was all smiles the whole time. None of it even phased her!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I checked out her old button and the "balloon" that is filled with water that is inside the stomach had popped. For all I know, it could have popped a day ago but the button didn't fall out until during OT. It was a huge blessing that I didn't discover her button missing while I was alone. I am SO grateful the OT was there with me.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Since her surgery (1 year ago) her button had only been replaced once. I was the one who changed it out, but I was in the doctor's office with her telling me what to do. Just the day before this all happened I had told Austin it was about time to change her button but I wasn't ready to do it without the doctor so I was going to schedule an appointment. Now I am for sure ready to change it myself... I'm ready and not scared anymore. Nothing (that has to do with her button) can scare me after that.</span><br />
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Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-29334254342271174592013-09-08T21:17:00.000-07:002013-09-09T02:43:35.647-07:00Who will take my role?<div style="text-align: center;">
Have you ever thought about what would happen to your children if you passed away?</div>
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What would happen if both you AND your husband passed away?</div>
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I am sure it has crossed your mind before and you may even have a will written out in case that has happened. Or you may not have a will, but you may have at least asked a couple if they would be willing to take your children if anything happened.</div>
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As a special needs parent, we think about that quite often. It's a fear that our child wont be well cared for if something happens to us. We know our child very well and all of their needs and wants. Many of us can know what our child will need by a small moan or a quick look. Some of us may be able to fulfill their needs before they even need to ask. Or sometimes there is no way to console our child but we know ways to comfort them while they scream or things to do to ease the pain. Many of us often worry that no one will be able to care for our children the way that we do. Some of us even worry that no one will want to care for our children.</div>
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Before Oaklynn was even born, Austin and I had dinner at my sisters house. We asked her and her husband if they would take our kids if anything were to happen to us and they happily said yes! Well, Oaklynn got the diagnosis and life has changed for us. There is no way I can now approach that same sister and ask, "You're still OK taking our kids if something happens . . . right?" Caring for a special needs child is different than caring for a typical child. I would never want to ask her and have her feel obligated to say yes because if she says no then she may seem like she doesn't love my children (though I wouldn't feel that way at all).</div>
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I had a couple other sisters sit me down and tell me that even though Oaklynn is special needs, they would love to take her and my other children if anything happened to us. They explained that they knew what they were getting into by offering, but that they feel like they would be able to take the responsibility and they would feel blessed to have her in their family.</div>
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I got home and started crying. As a special needs parent, it is not easy to ask someone to care for your special needs child (and their siblings because it isn't fair to split your kids up just because they are different). You don't want the person to feel obligated to say yes. They do say yes but they really do not feel comfortable to take on such a task, they just don't want to hurt your feelings. As the parent, you want to know that your child is going to be with someone who understands what they are getting into and is willing to take on raising your children no matter how difficult the days may be with a special needs child.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv2MnPKCkigUUM0mrWaB381jOohDkn8XwMYazPG6xrfINoZRswU5jxw82REUexsO90MwHeQHu26yWUSylXb3i7YENqoooy0lDje02jiLDSoGDJZOaG_POsnYy-2Nwi09HxzXOHLQ8PVKY/s1600/Oaklynn+PT.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv2MnPKCkigUUM0mrWaB381jOohDkn8XwMYazPG6xrfINoZRswU5jxw82REUexsO90MwHeQHu26yWUSylXb3i7YENqoooy0lDje02jiLDSoGDJZOaG_POsnYy-2Nwi09HxzXOHLQ8PVKY/s320/Oaklynn+PT.JPG" width="239" /></a></div>
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So what I am getting at is that I want you all to think about if raising a special needs child is something you could do. Then think about someone you know (maybe a sister, cousin, aunt, friend, someone at your church . . . . ) who has a special needs child and think about that child and their needs. Put yourself if their parents shoes and think about if raising them is something you could do. If so... TELL THEM! You may think, "they have a big family, I'm sure they already have someone who offered." But don't think that way because you never know and you may be that person who the family has been waiting for!</div>
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It is so much easier to have someone come up to you and let you know they are willing to take on the parental role. That way you know that they really would be willing to then having to ask someone who you worry they just said yes so they didn't hurt your feelings. Or if someone asked you to take their children before they had a special needs child and you said yes before, re-assure them that you still want to raise their children if something happens to them. And if not, then be honest and let them know that you don't feel like you could raise a special needs child. I guarantee they will not get angry but be happy that you spoke up.</div>
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No matter if you are a special needs parent or not, we all want to make sure our children are well cared for if something happens to us. It's just harder to find someone to take that role when you have a special needs child. So help us out and speak up! Let us know if you are willing to do so. . . it will help give us one less thing to worry about.<br />
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Typical moms. . . what would be a concern or worry about approaching a special needs mom about taking on her role if something were to happen?<br />
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Special needs moms. . . Please share how you would feel if someone approached you and offered to take on your role.</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com4tag:blogger.com,1999:blog-2972125005000627933.post-80588260531698571732013-08-12T08:52:00.001-07:002013-08-12T08:54:50.373-07:00Pre-School Awareness Letter<div style="background: white; line-height: 18.0pt; margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 10pt;"><span style="font-family: Arial, Helvetica, sans-serif;">The following is a letter I typed up and then had the teacher put in all the kids backpacks. I think it is important to spread awareness and not be shy about your child being "special". More moms need to speak up about their child so that others feel comfortable around them too. ENJOY!</span></span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">Hello!<o:p></o:p></span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">Our daughter Oaklynn is in Ms. Melanie’s<span style="color: red;"> </span>Preschool
class with your child. We wanted to introduce her to you! You see, Oaklynn has
Rett Syndrome. She has a damaged gene which regulates a special protein in our
bodies. This protein helps us to walk, talk, and move around…..it really helps
us do lots of things!</span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">So, Oaklynn cannot walk, or talk, or even use her hands very well….but
she is full of love, life, and energy, plus she is smart! She understands
everything going on around her….she just cannot respond in words. She is
trapped inside her body. We listen to the sounds she makes to know what she
wants. She also uses her eyes to communicate. Oaklynn will be working with
therapists during the school day to work on things like walking and ways to
communicate. Your child will see her using an eye-gaze computer and a picture
board to communicate as well as answer questions in the classroom.<o:p></o:p></span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">Oaklynn is a very friendly and loving little girl. Because she can’t
control her body, she pulls her hair a lot and may swing her arms around. She
does not mean to hit others but sometimes she just gets so excited. She also
wears arm braces a lot to help calm her down and keep her from hitting herself
or pulling her hair. Oaklynn has a G-Tube (a hole in her abdomen that allows us
to put fluid directly into her stomach). Your child may see her getting liquid
through her tube. She can eat by mouth but will not swallow fluid and may need
to get hydration through her tube.<o:p></o:p></span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">She can’t wait to spend most of her day with some active, wonderful
children! Our hope is that this will be a great experience for everyone.
Oaklynn will learn from a wonderful teacher, fun students and friends! And, we
hope, your child will learn about a different kind of “special” child. I’m sure
they will have fun helping her learn and playing games! If your child is
interested in hanging out with Oaklynn outside of the classroom, we would LOVE
that too!<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">If you (or your child) have ANY questions or concerns, please do not hesitate
to call Whitney. Her cell number is xxx-xxx-xxxx or her email is oaklynnbug@gmail.com.
If you or your child would like to learn more about Oaklynn or Rett Syndrome we
would love for you to check out our blog at mysilentangelsfight.blogspot.com.<o:p></o:p></span></div>
<div style="background: white; line-height: 18.0pt; margin-bottom: .0001pt; margin: 0in;">
<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">Thank you in advance for getting things off on the right foot and
helping your child understand that Oaklynn is a fun little girl (just like your
child) that just needs a little special help!<o:p></o:p></span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">Sincerely,<o:p></o:p></span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt; mso-bidi-font-family: Times;">Whitney and Austin Cooley (Oaklynn’s Parents)</span><span style="font-family: 'Tempus Sans ITC'; font-size: 10pt; line-height: 18pt;"> </span></div>
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<span style="font-family: "Tempus Sans ITC"; font-size: 10.0pt;"></span></div>
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<span style="font-size: large;">What is your reaction to this letter? Share your thoughts!</span></div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com3tag:blogger.com,1999:blog-2972125005000627933.post-43308193150841450212013-07-26T20:35:00.001-07:002013-07-26T20:35:59.971-07:00Ducks<div style="text-align: center;">
Oaklynn had her Occupational Therapist over and they were in her room working. I was out at the kitchen table trying to entertain Kynslee (as she often tries to join Oaklynn during therapy). I all of the sudden heard Oaklynn "talking" really loud and a lot (her talking is moaning and trying to get sounds out). Then she did what she rarely does (only when she is excited). She started talking like a 16 month old would. She moved her mouth around and tried to put consonants and vowels together and tried so hard to actually get real words out. She started yelling and hyperventilating from excitement. </div>
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Her OT started laughing and said, "Ya, Oaklynn! Do you like ducks?" I walked in and saw they were reading a book together and there was a duck on that page. I asked if she started "talking" and getting excited once they saw the duck and she said, "Yes. Oaklynn must love ducks".</div>
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I got down next to Oaklynn's face and said, " Let me tell you why Oaklynn is so excited. Last Saturday we went to the park and Oaklynn got to feed the ducks!" Oaklynn immediately looked at me with a BIG smile and started giggling. I said, "Oaklynn, you are wanting to tell Mrs. Elise about how mama put the bread in your hand and how we threw it really far into the water and how all the ducks came over and ate all your bread... huh?" She couldn't stop smiling. It brought tears of joy to my eyes.</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzdOrJff9zAsECvMeKpSlyMNAr00wL80BD_Uh4FboK1x9_PxL04Cxf2Yvo0qcQY8-F6XZBwB_8e-Lhf97h8aA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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I love it when she can express her excitement about something just like any other 3 year old would. </div>
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<span style="font-size: large;"><b>This mama duck is proud of her sweet little duckling!</b></span></div>
<div style="text-align: center;">
<br /></div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com0tag:blogger.com,1999:blog-2972125005000627933.post-43957982312639014442013-06-26T13:16:00.000-07:002013-06-26T13:16:30.916-07:00Qualifying for Social Security<div class="MsoNormalCxSpFirst">
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I want to introduce you all to <span style="font-size: large;"><b>Molly Clarke</b></span>. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvu6433WyzvIZoJVKYfTAJ-TMNEn4IPZxXJ0fJ5JJAc17JeeJ2LeeHf-AX-ICbFPwzY8wAmPh8yGlJolIdpRHp44SRwgEM9nfjik3HUP1o1MQ5_UlH-NDju4jkt_pdaMYiS5t8RLY92pI/s1600/MollyClarke.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvu6433WyzvIZoJVKYfTAJ-TMNEn4IPZxXJ0fJ5JJAc17JeeJ2LeeHf-AX-ICbFPwzY8wAmPh8yGlJolIdpRHp44SRwgEM9nfjik3HUP1o1MQ5_UlH-NDju4jkt_pdaMYiS5t8RLY92pI/s200/MollyClarke.jpg" width="200" /></a></div>
<br />
<div style="text-align: center;">
She writes for the <a href="http://www.disability-benefits-help.org/blog" target="_blank">Social Security Disability Help Blog</a>. They use their blog and website to promote disability awareness, provide useful resources, and help individuals throughout the Social Security Disability application process. She is a guest writer today for my blog. Great information about applying for social security... please read! </div>
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<span style="font-size: x-small;"><br /></span></div>
<div style="text-align: center;">
<span style="font-size: x-small;">(The photos throughout the post are photos of Rett girls. They are NOT affiliated with the social security department but were added by me. I can't publish a post without our cute girls faces.)</span></div>
<br />
<b><u><br /></u></b>
<b><u><br /></u></b>
<b><u>Disability
Benefits for Children with Rett Syndrome</u><o:p></o:p></b></div>
<div class="MsoNormalCxSpMiddle">
Rett syndrome is a genetic disorder of the nervous
system that typically affects females between the ages of 6 to 18 months. Rett
syndrome is considered to be an Autism Spectrum Disorder and is characterized
by the inability to perform purposeful movement. </div>
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Caring for a child with Rett syndrome requires extra
time, energy, and—in many cases—money. Additional medical care and supportive
services can become quite expensive. As the parent of a child with Rett
syndrome, you may also find that you cannot work while simultaneously providing
around-the-clock care for your child. The resulting loss of income and medical
insurance can cause a significant financial burden. </div>
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If your child has Rett syndrome, she may qualify
for Social Security Disability (SSD) benefits. SSD benefits can be used to pay
for anything from food and clothing to things like assistive technology or
supportive care. The following article will give you with a brief overview of
the SSD system and will provide you with the information you need to begin the
application process for your child.</div>
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(Brooklyn)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb4frvs656l7u2VehfISq95CW9qSwVux9wUY_XxU7KDVEJ_xmu8CN3x3RShKJBz51DWBIdDM3G3-BHHFTZuqIvJXrAoV-EMOaNX7R3SR3hipn52cRkiMDirfhJuFFXj1hlYOnI9Rs-0CY/s1600/Carly.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb4frvs656l7u2VehfISq95CW9qSwVux9wUY_XxU7KDVEJ_xmu8CN3x3RShKJBz51DWBIdDM3G3-BHHFTZuqIvJXrAoV-EMOaNX7R3SR3hipn52cRkiMDirfhJuFFXj1hlYOnI9Rs-0CY/s200/Carly.jpg" width="200" /></a></div>
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(Carly)</div>
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<b><u>Compassionate
Allowances Processing</u></b></div>
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Typically, the SSD application process can take
months or even years to complete. The Social Security Administration (SSA) recognizes
that individuals with severely debilitating conditions cannot be expected to
wait these standard processing times. For this reason they offer the Compassionate
Allowances (CAL) program. The CAL program allows individuals with certain
conditions to be approved for disability benefits in as little as ten days.
Fortunately, Rett syndrome is one of the 200 conditions that qualify for CAL
processing. </div>
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It is important to note that you are not required
to fill out additional paperwork to receive CAL processing. The SSA will
evaluate your child’s application and expedite it accordingly. You can learn
more about Rett Syndrome and the CAL program, <a href="http://www.disability-benefits-help.org/compassionate-allowances/rett-syndrome-and-social-security-disability" target="_blank">here</a>.</div>
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(Roxie)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPnlwSgYz0cuyfuRC6oVox7IwGy0xQ1ytU5R900aoGoubmEqCUenjBTUgNpNOb7pH-HhVdNuWqRCd1s_wAq3Co-1e0OCNgONXxPhHSmVb8DKdzP1m_oGbuJKGqZ2cIwwpct4osLdpuT9I/s1600/Leah+Layton.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPnlwSgYz0cuyfuRC6oVox7IwGy0xQ1ytU5R900aoGoubmEqCUenjBTUgNpNOb7pH-HhVdNuWqRCd1s_wAq3Co-1e0OCNgONXxPhHSmVb8DKdzP1m_oGbuJKGqZ2cIwwpct4osLdpuT9I/s200/Leah+Layton.JPG" width="200" /></a></div>
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(Leah)</div>
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<b><u>Supplemental
Security Income</u></b></div>
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The SSA governs two separate programs that offer
financial assistance to individuals who have disabilities. The first
program—Social Security Disability Insurance—requires that applicants earn
income and pay taxes for a specific amount of time. For obvious reasons,
children don’t typically qualify for SSDI.</div>
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Disabled children typically receive benefits from
the second program—Supplemental Security Income (SSI). SSI is a needs-based
program that provides benefits to disabled or elderly individuals who have very
little income and financial resources. To qualify for SSI, applicants must meet very
specific financial limitations. </div>
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In the case of a child, a portion of his or her
parent’s income will be taken into consideration. The SSA calls this process
“deeming”. Deeming occurs for children who are under the age of 18, who are
unmarried, and who still live with a parent or guardian. Parents’ earned income, unearned income, and
financial resources will all be deemed.</div>
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Income and resources that will not be deemed
include the following:</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Welfare</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Public Income Maintenance (PIM), including Temporary Assistance to Needy Families (TANF)
and VA pension for veterans</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Food Stamps</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Disaster Assistance</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Foster Care Payments</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Tax refunds on real property (property that
includes land and/or buildings)</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->Home grown produce used for personal consumption</div>
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The SSA also makes allowances for living expenses. In 2013,
the allocation for each additional child that you support is $356 per month. The SSA
also includes a parental living allowance. The amount for one parent is $710
per month. The amount for two parents is $1,066 per month. These allowances
will be deducted from the amount of deemed income on a child’s disability
application. It is important to note that this amount will not be subtracted
for parents or children who already receive public assistance. </div>
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(Brenna)</div>
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(Melia)</div>
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<b><u>Medical Eligibility
Requirements</u><o:p></o:p></b></div>
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In addition to the
technical and financial requirements listed above. Your child must also meet
certain medical requirements. The SSA uses an official manual of disabling
conditions—referred to as the blue book—to determine a child’s medical
eligibility. <o:p></o:p></div>
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The SSA states, that to
qualify for disability with Rett syndrome, a child must meet one or more of the
following blue book listings:<o:p></o:p></div>
<div class="ListParagraphCxSpFirst" style="mso-list: l1 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]--><b>Section 110.08 B</b> –
Catastrophic congenital disorder: To qualify under this section, a child’s condition
must be expected to result in death within the first few months of his or her
life or must cause serious interference with development or functioning. <o:p></o:p></div>
<div class="ListParagraphCxSpMiddle">
<br /></div>
<div class="ListParagraphCxSpMiddle" style="mso-list: l1 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]--><b>Sections 111.06 A & B</b> – Cerebral Palsy: To qualify under this listing, a child’s condition
must severely impact body movement, walking, and standing. <o:p></o:p></div>
<div class="ListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto;">
<br /></div>
<div class="ListParagraphCxSpLast" style="mso-list: l1 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]--><b>Section 112.02</b> –
Organic mental disorders: To qualify under this listing, a child’s condition
must cause irregularities in their perception, intellect, emotions, or
behavior. <o:p></o:p></div>
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You can look up more specific
symptoms and requirements on the <a href="http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm" target="_blank">SSA’s website</a>: <o:p></o:p></div>
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(Oaklynn)</div>
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(McKenna)</div>
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<u><b>Social Security
Disability Application Process</b></u><b><o:p></o:p></b></div>
<div class="MsoNormal">
Prior to beginning the application process, it is necessary
that you collect records and documentation of your child’s condition and your
personal finances. Medical documentation should include records of your child’s
diagnosis, lab test results, summary of treatments, reactions to treatment,
hospitalizations, and any other relevant information. It is also important that
you collect personal statements from the professionals that interact with your
child on a regular basis. This may include doctors, caretakers, or teachers.
Statements should document how Rett syndrome affects your child’s ability to
perform day-to-day activities. </div>
<div class="MsoNormal">
Once you are ready to apply for disability benefits on
behalf of your child, you will need to complete two forms—the “Application for
Supplemental Security Income” and the “Child Disability Report”. Currently,
only the Child disability report can be filled out online. You will need to
call the SSA or schedule an appointment with your local Social Security office
to complete the application for Supplemental Security Income. </div>
<div class="MsoNormal">
When you prepare to begin the application process, you
should be aware that it may not be quick or easy. In fact, many initial
applications are denied and require an appeal hearing. It is important that you
do not panic if your child’s initial application is denied. You are allowed to
appeal the SSA’s decision. The key to being awarded benefits is persistence and
preparedness. </div>
<br />
<div class="MsoNormal">
For more information about applying for disability benefits,
visit Social Security Disability Help or contact Molly Clarke at
mac@ssd-help.org.</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-28514055256538421422013-06-24T21:41:00.001-07:002013-06-24T21:41:55.800-07:00Role Model<div style="text-align: center;">
When I first found out we were having another girl after Oaklynn, I was SO excited. I come from a family of 5 girls and 1 boy. I had many sisters to look up to as role models. I grew up wanting to be like my big sisters and I looked up to them. So when I found out that Oaklynn would have a little sister, I was SO thrilled for her to be able to to be a role model for her little sister. </div>
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Then came Oaklynn's diagnosis of Rett Syndrome. I automatically thought how her little sister would be teaching Oaklynn everything and Kynslee wouldn't have a "big sister" to teach her things and be a role model. It crushed me knowing that Oaklynn would want to be that "big sister" and teach her little sister the rules of life but wouldn't be able to. Kynslee quickly surpassed Oaklynn and started doing things that Oaklynn can't and that has been really hard.</div>
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About a few weeks ago, Kynslee (who was 14 months old) walked up to me with Oaklynn's arm brace and put it on my lap. I put it on the table and kept doing what I was doing. She took it from the table and put it in my lap. I again put it on the table. She grabbed it, screamed at me, and put it in my lap. I opened it up and decided to put it on her arm not realizing that is what she was wanting all along. She giggled with joy and ran into where her sister was and sat next to Oaklynn giggling. They had matching arm braces and Kynslee was SOOO happy to be like her big sister. That's when it hit me, just because Oaklynn is different, doesn't mean her little sister can't want to be just like her. Kynslee looks up to Oaklynn and it brings tears of joy to my eyes.</div>
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Kynslee wants to be in the same room as Oaklynn and loves sitting right next to her (if not ON her).</div>
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Kynslee has been bringing Oaklynn's toys to her to play with. She brings her books and flips through them while sitting next to her. She loves to sit in Oaklynn's swing with her.</div>
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Recently she has even picked up food off Oaklynn's tray that has fallen out of her mouth and tried to put it back in her mouth (at the same time, she has also been caught taking food out of Oaklynn's mouth and feeding herself, lol)</div>
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Kynslee is the only person who can make Oaklynn SOOO mad, and at the same time she can make her SOOO happy. Yep... sounds just like me and my sisters growing up. THAT'S a sister. </div>
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These two little girls together melt my heart. I love seeing them laughing together and having fun.</div>
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Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com2tag:blogger.com,1999:blog-2972125005000627933.post-50821097740733892782013-06-24T21:00:00.003-07:002013-06-24T21:00:50.046-07:00Throwing up for 12 daysOaklynn started throwing up on Saturday June 8th. My sister had a stomach bug the day before and was around her so we just figured she got the stomach bug as well. She threw up again on Tuesday, Wednesday, and Friday. I finally took her to see our pediatrician and he couldn't find anything wrong. We got x-rays to rule out pneumonia and those came back negative. We went back home and I thought that maybe it was acid reflux. So I decided to look into it more. I started feeding her very light foods and even raised the head of her bed so she would be sleeping at a slant. That still wasn't working. She was still throwing up every day. On Wednesday June 19th, it had been 11 days since she started throwing up and I didn't know what to do anymore. I took her to the ER to get more tests done to see what was wrong. They found that she has an ear infection but as for the stomach problems... everything came back negative. They were stumped and didn't know what else to do and sent us home.<br />
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<br />
Well, my friend Kelly has a daughter with Rett syndrome. I reached out to her for help as we have done everything else we could think of. She told me that her daughter Brooklyn throws up from drainage (snot going down the back of her throat). It sits in her stomach and causes her to throw up. I had never even though about the fact that Oaklynn can't blow her nose or cough up mucus when she needs to.<br />
<br />
It all clicked and I realized that just might be our problem! She never had a runny nose but she has had a wet cough and when she would breath, we could hear that she was congested. So the next day I went to the pharmacy and got cold medicine to help dry out her sinuses. I gave her 2 doses that day and there was no throw up!! She hasn't thrown up since starting the cold medicine.<br />
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I am so grateful for moms who understand and I can turn to for ideas and suggestions. Thank you Kelly... you're a life saver!<br />
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(on top of Oaklynn throwing up daily and having an ear infection, our 1 year old has had the stomach flu, an ear AND throat infection with a 104 degree fever. Austin and I have also been fighting colds. It's been a crazy couple weeks. So when I say Thanks Kelly, I MEAN IT!)Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com2tag:blogger.com,1999:blog-2972125005000627933.post-72718464581692160352013-06-15T21:05:00.000-07:002013-06-15T21:05:50.546-07:00Mother's Day 2013This mothers day was WONDERFUL. Got to spend the day with my husband and my two girls. Last year was a very difficult Mother's Day. It was less than 3 months after Oaklynn was diagnosed. I also had a 2 month old and my hormones were still out of whack from having a baby. It was really hard to see all those cute posts on Facebook where the child gets asked a question like, "How old is your mom?, What does your mom do?". It was hard seeing those sweet/silly answers and know that Oaklynn could never do one about her mom. It was such a hard mothers day and I cried most of the day. This year was MUCH different. I am out of my "shock" phase and have a whole new perspective on life.<br />
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We are part of a program called <a href="http://www.hopekids.org/" target="_blank">HOPEKIDS</a>. It is a group of families that have children who have life threatening medical conditions. A local cosmetology school let Hopekids have the salon for the day (and for free). It was a mother daughter pampering day. So Oaklynn and I got to go get our hair done, nails done, pictures taken, and eat lunch... all for free! How awesome is that? We had a really good time together and I loved spending time alone with just her.<br />
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<span style="font-size: x-small;">Picture below is Oaklynn getting her hair done. I had to hold her head still (since she rocks so much). I was singing to her to keep her calm.</span></div>
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<span style="font-size: x-small;">Getting our nails done together</span></div>
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<span style="font-size: x-small;">They also took a better picture of the two of us that I was told they would send to me... but I still have not received it.</span></div>
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The next day I was surprised with chocolate covered fruit that my girls made for me (with daddy's help). They also made me cards and I loved it. Daddy video taped Oaklynn making her card. She was so excited and so happy to be making mommy a gift and he wanted me to see it (since she can't tell me how excited she is). So he recorded them making the card. I got to sit and watch 15 minutes of them making me a card and I cried through the video. I loved seeing the excitement in her face and her choosing the colors. It was the best!</div>
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This year I also had someone send me roses "from Oaklynn". I thought it was my husband at first and I sent him a text to thank him. He immediatly called me (although he was at work), asking who sent me flowers. I told him, "Oaklynn did and I love them, thank you". He said, "no... seriously. Who sent them?" I then realized that he didn't send me the flowers. Someone (who chose not to put their name on the card so we have no clue who they are), sent me roses with a note from Oaklynn. It was the sweetest and most thoughtful thing ever. I cried when I realized that someone else did it. So if you are reading this blog post... THANK YOU! You made my mother's day extra special.</div>
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I hope everyone else had a WONDERFUL mother's day!</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com0tag:blogger.com,1999:blog-2972125005000627933.post-87529039148160342282013-04-17T22:27:00.000-07:002013-04-17T22:27:27.501-07:00Family Pictures 2013<div style="text-align: center;">
It's been a while since I posted. Life has been really crazy. Just finished helping out with a large (and amazing) Rett Syndrome Fundraiser (post and pictures to come).</div>
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We got family pictures done on Kynslee's first birthday. I love them so I wanted to share them with you all. </div>
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Are these not some of the cutest faces you have ever seen. I just love my little family!!</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com2tag:blogger.com,1999:blog-2972125005000627933.post-31474199588817217152013-02-28T19:56:00.000-07:002013-03-01T07:21:39.105-07:00Half Marathon 2013<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif;">Thanks to my amazing husband for taking time off work to watch the girls, donations from friends, and help from family... I was able to fly to Florida to be with other Rett families and run a half marathon in honor of our girls. I arrived on Friday night and met everyone up for a dinner. It was really nice to finally meet all the moms I always talk to. I roomed with a Rett mom named Tanis who is from Canada. I had been talking with her since shortly after Oaklynn was diagnosed. We had become really close and I was SOO excited to meet her. Her and her sister, Jolanda, are the ones in most of my pictures.</span></div>
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<span style="font-family: Verdana, sans-serif;">Saturday morning I relaxed and then Saturday afternoon I went over to the Expo to help out at the Girl Power 2 Cure booth. We had a booth where we sold some items and raised awareness about Rett Syndrome.</span></div>
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<span style="font-family: Verdana, sans-serif;">While I was there I started walking around and I saw Ali Vincent (first female to ever win "The Biggest Loser") and decided to wait in line to see her. She had just got there so there were only 4 people in line so I jumped in. I gave her a hug and chatted with her a minute. I told her about Oaklynn and Rett Syndrome and gave her a purple card about Oaklynn!</span></div>
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<span style="font-family: Verdana, sans-serif;">I left and went back to the GP2C booth to let them know that I informed her about Rett Syndrome. We put together a little goodie bag for her of GP2C stuff and Kelly and I went back over to her. We snuck in the front of the line and gave her a bag of goodies. She put the shirt on and took another picture with us.</span></div>
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<span style="font-family: Verdana, sans-serif;">We went back to our booth and towards the end when we were about to start cleaning up, Ali came over to our booth. She said she wanted to wear our GP2C shirt when she ran the run tomorrow but wanted a different size than we gave her. We did an interview with her about what girl power meant to her. I have to say that she is just the sweetest person. She is so genuine and not at all fake. She is bubbly and so fun to be around. Ingrid (the founder of GP2C) and I left the expo and went back to our hotel to get her another size. We called her and met up with her at her hotel and gave her and her friend some shirts. I am so glad I met her. She has a new show called, "Live Big with Ali Vincent" on the Live Well Network. You can follow her <a href="http://www.facebook.com/officialalivincent?fref=ts" target="_blank">Facebook page too.</a></span></div>
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<span style="font-family: Verdana, sans-serif;">The next morning we got up at 3am and got ready to go to the run. Our bus left at 3:45am and the traffic was horrible!! We got to the parking lot and the starting line was at least a mile walk from there.</span></div>
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<span style="font-family: Verdana, sans-serif;">There were corrals based on your running pace (A-H). Each corral started 5 minutes apart with the first one starting at 5:30am. There were fireworks at each corral start time. There were SO many people (over 20,000) so pacing yourself was hard. Throughout the run there you would see Disney characters on the side of the road, not just in the park. </span><br />
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<span style="font-family: Verdana, sans-serif;">It was right about mile 9 where I needed some motivation. So I pulled out my phone and played a video of Oaklynn that Austin had sent me. I cried a little big and then kept on running. I also watched it around mile 11. Seeing her try so hard to talk and how she has to work so hard to do the smallest things made me remember that if my legs can move, I can finish. How can you not get motivated by watching this video?</span><br />
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<span style="font-family: Verdana, sans-serif;">There were also signs that Disney had around the course that said, "MIND OVER MUSCLE" and that reminded me, that is what we are running for. So eventually our girls minds will be able to control their muscles!</span><br />
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<span style="font-family: Verdana, sans-serif;">Tanis and I finished the Half Marathon hand in hand.</span><br />
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<span style="font-family: Verdana, sans-serif;">And shed a few tears for our girls</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1fmFDm9WpN_0XGVgexaNTyTxlWAij_dmUvkQsq0UXdVpkx72Xba3GqddQIXdKvHT0odEuU11N4JaGTEGt_JvPZNgEqv-6ge-m6R_hCgCqG54S9OY2XFFz4CNYyhKQrhrfsWsECg16HXo/s1600/IMG_0135.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1fmFDm9WpN_0XGVgexaNTyTxlWAij_dmUvkQsq0UXdVpkx72Xba3GqddQIXdKvHT0odEuU11N4JaGTEGt_JvPZNgEqv-6ge-m6R_hCgCqG54S9OY2XFFz4CNYyhKQrhrfsWsECg16HXo/s320/IMG_0135.JPG" width="213" /></span></a></div>
<span style="font-family: Verdana, sans-serif;"> Girl Power 2 Cure had a tent set up where we all met up after the race to take pictures. The picture below is just a handful of moms holding their girls picture. We couldn't get everyone there at the same time.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYC74WytCOdIkKzJpqH_YmVe9_QKR9pV2E_SZik7tJaPjVoW5VJNNPEKYhtq-zACS3WmGDf4lquiphvMUWLD7F7nGbe-cO2UYwkWtKKdo23RE_WL0UKF5mSE-n4Usa0lmKeFMp5XLWplc/s1600/IMG_0141.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYC74WytCOdIkKzJpqH_YmVe9_QKR9pV2E_SZik7tJaPjVoW5VJNNPEKYhtq-zACS3WmGDf4lquiphvMUWLD7F7nGbe-cO2UYwkWtKKdo23RE_WL0UKF5mSE-n4Usa0lmKeFMp5XLWplc/s320/IMG_0141.JPG" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">And this picture below is moms and friends who ran for their girls too. Again, not all the runners are pictured. We had 116 runners total and raised over $200K to fight Rett Syndrome.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvfHkD3k-uSTZ2XO09b1HmZMVeeDSYu2sJgCFqgAscuyhwkOz3vSFI88wdajgEjW62XvRtXlMYwj3QWMK0C7_w5vJOob99gD8DxKeMZc9K36kerKCdRUbJnc4CVp796mK1KUkoYZQF76U/s1600/After+Race.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvfHkD3k-uSTZ2XO09b1HmZMVeeDSYu2sJgCFqgAscuyhwkOz3vSFI88wdajgEjW62XvRtXlMYwj3QWMK0C7_w5vJOob99gD8DxKeMZc9K36kerKCdRUbJnc4CVp796mK1KUkoYZQF76U/s320/After+Race.jpg" width="320" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">Picture of me with my hero!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyJZiYIvr607u8XD96dOhiiNyXp8WokKRjZ7Henc08iyVJ1auCOkfzgYHipa46yMNtQHWXg0sXa_oj2ydXLS-658JJ4TTW8Ui0VZSsuRptPKOAKt_XO4q2_KcjKrp_UAbF6UTYhFTjcEs/s1600/IMG_2856.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyJZiYIvr607u8XD96dOhiiNyXp8WokKRjZ7Henc08iyVJ1auCOkfzgYHipa46yMNtQHWXg0sXa_oj2ydXLS-658JJ4TTW8Ui0VZSsuRptPKOAKt_XO4q2_KcjKrp_UAbF6UTYhFTjcEs/s320/IMG_2856.JPG" width="239" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">And the BEST picture of all... my sweet girl wearing her medal. She deserves it!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhPJIBib5BLkTXKgJWxs4cS9kpwZ_Wmb0wAo3yfl6xUwSjjIQJpXUhMBAAJohJdZv6QakT6RuBlAddO7P1l-PZJmskOTs4o1ZfQx5lEZnVidgHS-mXdO20aAmfPTVzu8P89mMycpR8yRo/s1600/Oaklynn+Medal+6x4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhPJIBib5BLkTXKgJWxs4cS9kpwZ_Wmb0wAo3yfl6xUwSjjIQJpXUhMBAAJohJdZv6QakT6RuBlAddO7P1l-PZJmskOTs4o1ZfQx5lEZnVidgHS-mXdO20aAmfPTVzu8P89mMycpR8yRo/s320/Oaklynn+Medal+6x4.jpg" width="213" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">If anyone is interested in running with "Team Oaklynn" or for their own daughter next year, <a href="http://www.girlpower2cure.org/disney" target="_blank">SIGN UP HERE</a> to be on the email list. It was an amazing weekend and I promise you wont regret it!</span></div>
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Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com2tag:blogger.com,1999:blog-2972125005000627933.post-64337104334140177332013-02-20T20:24:00.000-07:002013-02-20T20:24:04.510-07:00Live in the moment<div style="text-align: left;">
<span style="font-family: Georgia, Times New Roman, serif;">February 24, 2012 is the day that Rett Syndrome officially entered our lives. That was the day we sat down with Oaklynn's doctor and were told the news. That was the day I felt my life was over and there was no way I could go on living. I remember trying to sleep that night but every time I closed my eyes, I kept picturing my sweet little girl grown up and in a wheel chair. I kept picturing her lying there helpless and would just start sobbing. I just didn't understand how she could go from where she was now and continue to get worse. I kept trying to convince myself that she would be the one exception to the rule and she wouldn't regress like all the other girls do with Rett Syndrome. She would be a miracle and astound everyone. I didn't get any sleep that night and I laid there crying all night. That feeling that I had was one that I have never felt before. I literally felt like my life was over. I didn't know how I could pick myself up and go about my day. I didn't eat much for a few days but forced myself because I was 35 weeks pregnant. I would sit there all day watching Oaklynn crawl around and play with her toys and just cry and cry and cry all day long. How can you sit and watch your little girl who was born so perfect and know that every day was going to be worse than the last. That she may wake up the next day and stop standing, stop crawling, stop playing, stop breathing... and every day could be the last time you see her do something that she loves. It just didn't make sense to me and hurt. My heart hurt so incredibly bad that I can't even begin to describe the pain. I just had to sit and watch my daughter regress and loose skills and there was NOTHING that could be done about it. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">That whole week was a nightmare. Anything anyone said (even if I just heard someone talking and they weren't talking to me) would make me cry. I tried so hard to go out in public and get my life back together, but I couldn't do it. I didn't see how it was possible. I have a niece that is just a few months older than Oaklynn, and being around her was SO HARD. Being around any kids her age, for that matter, was heart wrenching. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Finally, it clicked. I was sitting there playing with Oaklynn and I realized that I had to snap out of it. Oaklynn needs me and she can't get through life without me. I realized that I needed to focus on her right here and right now. I couldn't cry about what would happen or could happen to her because if I did that, she would regress and I wouldn't get to enjoy the things she was able to do. So I let myself have that week to mourn the child I had lost. I cried and I let myself be sad. Once that week was up, I stopped reading about what could happen to her and thinking about what I would have to do for her as she got older. Instead, I started living in the moment and enjoying all that she was able to do that day. I still to this day have my moments of weakness where I sob uncontrollably... and that's OK. I think I still have the right to cry! </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">When Oaklynn was born, I signed up on a website that would send me weekly emails about her growth and development. I am still currently getting those emails and I am no longer able to open them. I use to open them and cry every time they would talk about how your child should now be saying so many words. How your child will start asking lots of questions... It was heart breaking to read so I decided to stop opening them.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Our most difficult moments now are watching her have "Rett Fits". These are fits that are thrown for no reason and there is nothing you can do about it. It's a bloodcurdling scream that can't be described. It's followed by her grinding her teeth really hard, throwing her body around, hitting herself in the head, biting her hands, scratching herself... and we can't do anything to stop it. Austin and I still both have a hard time when these happen because It's hard to watch your sweet girl go through this. There is a blog that was written by a girl with Rett Syndrome. She talks about how she understands it all and how she is literally trapped and how she feels about it. I came across a blog post she wrote about taking a medication for seizures and the side effects. This is from<a href="http://spiritdances.wordpress.com/my-rett-body/" target="_blank"> her blog</a>, </span></div>
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<i><span style="font-family: Georgia, Times New Roman, serif;">"<strong style="background-color: white; color: #a6b79b; line-height: 16.5px;">I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day. I became so angry that I couldn’t be around people. I was so agitated that I couldn’t sit still. I felt like I wanted to leave my body, but I couldn’t! The only peace I had was when I was sleeping. I couldn’t even urinate. It stopped that too. I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing. I even remember throwing myself backwards. It has been horrible for me."</strong></span></i></div>
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<span style="background-color: white; line-height: 16.5px;">I often think of this and how Oaklynn is inside her body crying for it to please stop. How she doesn't have control over what it does and how she wishes so bad that she could just leave her body.</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">When I was in my moment of denial, I kept thinking that she would be a miracle and break the rules and astound everyone. Well, she for sure astounds us! She is the most amazing little girl I have met. She may not be able to walk/talk/play like the kids her age. BUT, there are things that Oaklynn can do that most kids her age can't...</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">**Oaklynn can light up a room with her smile. She doesn't have to say anything... just smile. We have had people comment about how they love being around her because of that. If you have met her, you would agree**</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjilJfp2rVR2Rpnk4Cz5QmMdr4LgTiIBfSE6yuz2pEJz1f0pSh_8N18vtE7b4YvBlItLtXtIpmi_-cy_wavUAuCbBR30wmPde0I45VHKwITqbCcF2b8MnxHwGYckE7th5dLr8v_V5jRB8g/s1600/Oaklynn.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjilJfp2rVR2Rpnk4Cz5QmMdr4LgTiIBfSE6yuz2pEJz1f0pSh_8N18vtE7b4YvBlItLtXtIpmi_-cy_wavUAuCbBR30wmPde0I45VHKwITqbCcF2b8MnxHwGYckE7th5dLr8v_V5jRB8g/s320/Oaklynn.jpg" width="213" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">**Oaklynn can smile with her eyes. She has this twinkle in her eyes that makes you smile**</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">**Oaklynn can communicate with her eyes. She understands what her abilities are and what she needs to do in order to get us to understand her**</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfdQrjLQkbz1t1gCGtobLsIdL1zz9InRXG1oMp3qCCxOmjJjdKisC-eCUDfEtwOlCPgkhNysFl-0pBqmqk5myfaFHDlvVXIWZWgOwgH0FrrpaRuKMau3ky1RjkcTBKfmkD2K-h-X8GKhs/s1600/IMG_1131.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfdQrjLQkbz1t1gCGtobLsIdL1zz9InRXG1oMp3qCCxOmjJjdKisC-eCUDfEtwOlCPgkhNysFl-0pBqmqk5myfaFHDlvVXIWZWgOwgH0FrrpaRuKMau3ky1RjkcTBKfmkD2K-h-X8GKhs/s320/IMG_1131.JPG" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">**Oaklynn has more determination and drive than any other 2 year old I know. She wants to walk so bad and I believe that one day she will**</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiIv3QET0ySYJFgQJn2PaQUrcWMsimZxsxKiCgDgYGtgMhiJxQAVEJXbD9ADrCheRN1cejVS0bvMNQ9UdGmK3u-QgXBzpULRp_6UF7QJ5Ql_Hrtev6W6YyPoqZwbMwLbby_S4GAWOJV7Y/s1600/IMG_0856.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiIv3QET0ySYJFgQJn2PaQUrcWMsimZxsxKiCgDgYGtgMhiJxQAVEJXbD9ADrCheRN1cejVS0bvMNQ9UdGmK3u-QgXBzpULRp_6UF7QJ5Ql_Hrtev6W6YyPoqZwbMwLbby_S4GAWOJV7Y/s320/IMG_0856.JPG" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><b>These are some of my favorite moments over the past year that Oaklynn use to love doing...</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBImmtLxhEG5QQ-maKuyYiBzloIK_LxmXCKiMXr8aERVMdDcc0VRXOxpHBpSt1zqNbGYbwzAyBRfQj4-M9R1qbejgAyRHlSVDvKn-g_Xi2auXaSJbhdvtiA61tITKzZJ5c05kXQxFEFPQ/s1600/IMG_8372.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBImmtLxhEG5QQ-maKuyYiBzloIK_LxmXCKiMXr8aERVMdDcc0VRXOxpHBpSt1zqNbGYbwzAyBRfQj4-M9R1qbejgAyRHlSVDvKn-g_Xi2auXaSJbhdvtiA61tITKzZJ5c05kXQxFEFPQ/s320/IMG_8372.JPG" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;"> She loved to crawl up to her sister and laugh with her.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGifUpsZ5b9KJGG7IdPGfDXJEIfw4uwR7DXcVw3pBJf2Nge49eAeYL9BiP0wZaN2318m8EbSNsVaCdoG9Rqgh2dJEK8VKxbMDC-QOkrOsOI3viIupTqKvlq1xSOJNu53dH1tjsgctj6lU/s1600/IMG_7993.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGifUpsZ5b9KJGG7IdPGfDXJEIfw4uwR7DXcVw3pBJf2Nge49eAeYL9BiP0wZaN2318m8EbSNsVaCdoG9Rqgh2dJEK8VKxbMDC-QOkrOsOI3viIupTqKvlq1xSOJNu53dH1tjsgctj6lU/s320/IMG_7993.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzMZo-ND2mS7igXbk6bjRby-Voc5Yrw05T_XXh67yaMrhczXfqTFgzx92dzu4hPb76k0grZJLr-pZsRXlxCdYRZ_2WtmqMolt_ZO-8StiBYORvM-l0n6N9Foybkg889KdUdENKbbsbtZw/s1600/IMG_7941.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzMZo-ND2mS7igXbk6bjRby-Voc5Yrw05T_XXh67yaMrhczXfqTFgzx92dzu4hPb76k0grZJLr-pZsRXlxCdYRZ_2WtmqMolt_ZO-8StiBYORvM-l0n6N9Foybkg889KdUdENKbbsbtZw/s320/IMG_7941.JPG" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She was always so curious about her.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuSo1r3RXCHKmNYdMRB0_ulJ-xBI3LNmvv0OrP55NVxBcTuWA18Af37hleUq8EmhQRQehh-BqC1duj7NyLoTVxO8gyXlh0_xH56r3nHxV-uSjvjQw7bn6p7BFtJQFOWvB2DkSixK8IIyU/s1600/IMG_8380.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuSo1r3RXCHKmNYdMRB0_ulJ-xBI3LNmvv0OrP55NVxBcTuWA18Af37hleUq8EmhQRQehh-BqC1duj7NyLoTVxO8gyXlh0_xH56r3nHxV-uSjvjQw7bn6p7BFtJQFOWvB2DkSixK8IIyU/s320/IMG_8380.JPG" width="320" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She loved to pull to stand in her crib and bounce up and down and swing back and forth.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiud4WSyfpeShoTW-Uko4BURx690z_iuX4NWJiCcxhJZEoWq57bK33uZN_2RpbCtCt3ZrXSpqF1Vkc10pf4zm-hngKQ0tVmCSGBx0igWKcJy_ln0IWrtVHqpEDhvx7ciIaWSEkWPqy9piU/s1600/IMG_7792.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiud4WSyfpeShoTW-Uko4BURx690z_iuX4NWJiCcxhJZEoWq57bK33uZN_2RpbCtCt3ZrXSpqF1Vkc10pf4zm-hngKQ0tVmCSGBx0igWKcJy_ln0IWrtVHqpEDhvx7ciIaWSEkWPqy9piU/s320/IMG_7792.JPG" width="240" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She would always crawl under the desk while I was sitting at it and growl at me.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidKCvvM2dORc8zvTnBxchJD8WNhVXXa4tJKZ-fzrdAyZ48QYyRUbcddltXSUFVJQDFA4B0tQWrJRzebXzro77AUnqtD_hxDXgtZEOLrNpFVXfVu863awZ25uGPAMsLiPbStVa1fRUu_fM/s1600/IMG_7935.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidKCvvM2dORc8zvTnBxchJD8WNhVXXa4tJKZ-fzrdAyZ48QYyRUbcddltXSUFVJQDFA4B0tQWrJRzebXzro77AUnqtD_hxDXgtZEOLrNpFVXfVu863awZ25uGPAMsLiPbStVa1fRUu_fM/s320/IMG_7935.JPG" width="240" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She loved to rock in the rocking chair my dad made for her.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"> She loved to pull to stand at her baby stroller and walk with it.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"> She loved to pull all her movies down</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">She always thought Mickey Mouse looked better the closer she was to the TV.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><b>She can no longer to any of these things as she has lost the ability to get around.</b></span></div>
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This journey has been incredibly hard. I have lost many friends through this journey because they just don't understand what we are going through. There are weeks where we don't leave the house because Oaklynn has been "off" and I am working on trying to figure her out again and get her back on schedule. I have to admit... This isn't the life I pictured for myself!</span><br />
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I am grateful for it though because I'm happy to still have Oaklynn. I'm happy I can hold her in my arms and kiss her whenever I want to. I am grateful for what she has taught me about life and for the better person she has made me. I am grateful that researchers are SO CLOSE to a cure for these sweet girls (<a href="http://girls.girlpower2cure.org/oaklynn">http://girls.girlpower2cure.org/oaklynn</a>).</span><br />
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We are so grateful for those that still include Oaklynn like any other child her age. For inviting her to birthday parties and to play with their kids. We may not be able to go, but that isn't because we don't want to. Life is always last minute with Oaklynn. There are many times we plan to go somewhere and are about to walk out the door and we now have to stay home because something happened (which is typical). So please don't stop inviting. It means more to us than you know!</span><br />
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If there is anything I want you to get from this, it is to live in the present and enjoy your life one day at a time. You never know when things may change and never be the same. You can not go back in time to re live a moment. So just remember each day, to enjoy it and spend time with the ones you love!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." -Christopher Reeves</span>Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com5tag:blogger.com,1999:blog-2972125005000627933.post-11969196884555638212013-02-13T20:38:00.000-07:002013-02-13T20:38:09.889-07:00Rett Syndrome Clinic 2013<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">We left on Thursday afternoon and flew to California to go to the Rett Syndrome Clinic. This clinic has about 8 specialists who know all about Rett Syndrome. We have been looking forward to this visit for a VERY long time. Oaklynn did SO good on the plane she was all giggles and smiles and had a great time. To be quite honest, she was all smiles from the second she saw her sister drive away with her Nana and realized that she got to be alone with mom and dad . . . hahaha.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We got in later that night, so we just went to the hotel and went to bed. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The next morning we went to breakfast and then to the Rett Syndrome Clinic. We were there from 10:30 - 4:30. We sit in a room all day and all the doctors/therapists are in that one office. There were 3 other families there the same day and it was literally just us 4 families and the staff in the office that day. The doctors and therapists switch between rooms and come in and out. There is literally no schedule or method to their madness... but it totally works (lol)!! They had a sign on each persons door that had the child's initials and the people who she would be seeing that day. That was how they kept track of who that girl had seen.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">These were the people we saw and what we got from them</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><u><b>NEUROLOGY</b></u> - Dr. Birnbaum</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">We didn't have much to talk to him about. Oaklynn had a normal EEG (normal for Rett Syndrome). He is mainly there to help discuss seizures with parents as well as medication to help control them. Since Oaklynn isn't having seizures yet, we didn't see much of him (and we were quite happy about that, YAY).</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>PEDIATRICIAN</u></b> - Dr. Mary Jones</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">One of the sweetest ladies we have ever met. She was WONDERFUL with Oaklynn. We were very pleased with her and all the knowledge she had about Rett Syndrome. She just taught us more about their apraxia and things that Oaklynn may come across as she gets older. Overall she was pleased with the things Oaklynn could do.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>EKG</u></b> - Sarah</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She had a great EKG. Nothing to worry about as of right now!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>NUTRITION</u></b> - Gail</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We were able to talk to her about what Oaklynn takes by mouth every day. We made sure that we were meeting her calorie requirements (which we are). Since she doesn't eat dairy, we also made sure that she was getting all the vitamins needed in other areas. Those vitamins that she wasn't getting, we are now supplementing by giving her that vitamin through her tube. We made sure we are doing a good amount of fluid through her button and that we could stay off the formula that we were supposed to be giving her (I hate giving her that stuff. I would rather pump her full of just straight vitamins then give her that, just to make sure she is getting the correct vitamins)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>OCCUPATIONAL THERAPY</u></b> - Stacey</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Didn't talk to her about much. We didn't have many questions as Oaklynn lost most of her hand use. Oaklynn communicates with her eyes and mainly uses her hands to pull her hair. She still has some use of her left hand to do some things. She is also doing SO GOOD at eating by mouth, so we didn't really have any questions for her.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We then took a break for lunch </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">(and some Mickey Mouse of course)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>PHYSIATRY</u></b> - Dr. Elaine Pico</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">She looked at Oaklynn's overall posture and motor ability. I brought x-rays for her to look at and she said she wanted them repeated in 6 months at the latest. She feels like Oaklynn is starting to get scoliosis. She said it isn't severe and nothing to worry about yet, but it is something that we should take precautionary measures to try and prevent.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>COMMUNICATION SPECIALIST </u></b>- Judy Lariviere</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We talked to her about how we communicate with Oaklynn. She tried different devices to see what Oaklynn responded to the best. She first started by using buttons that Oaklynn would push. She realized that it didn't work well for Oaklynn because of her apraxia and sensory seeking. Oaklynn always wants to feel and touch things so she just kept hitting the button over and over again. So she then tried to put the button by her cheek so that Oaklynn would need to turn her head to talk. In the picture below, Oaklynn was turning her head to say, "more please". She would turn her head and her cheek would hit the button and the button would speak for her. She did fairly well with this technique but not the best. I then told Judy that we felt that the eye gaze machine would be best for Oaklynn. I told her how Oaklynn makes GREAT eye contact and speaks with her eyes. We set up the machine and tried it out.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It's a big screen (about 12 inches) that has a "camera" on it. You set it up by having the camera locate her eyes. It then tracks her eyes and speaks what she is looking at. The screen shows you what she is looking at but it does not choose the option until she looks at it for 1 second, which is a long time for a girl with Rett Syndrome (you can change the amount of time if needed). She did VERY good with the eye gaze device. We were all impressed with how fast she caught on. The session was recorded so she will be sending me the recording in the next week or two. Once I have it, I will put it on the blog for you all to see. We are in the process right now of trying to get an eye gaze machine. They are VERY expensive so it wont be approved by insurance unless THEY feel it would benefit Oaklynn. Keep your fingers crossed.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>MUSIC THERAPY</u></b> - Titia</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Oaklynn was screaming and was EXHAUSTED by this point. She would calm down if I sang her specific songs, but for the most part she lost it. We didn't get much time with her since Oaklynn hadn't had a nap and was so tired. Music is Oaklynn's favorite so I wish we could have had more time, but Oaklynn did SO GOOD the whole day that I couldn't expect much from her.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b><u>PHYSICAL THERAPY</u></b> - Marybeth Finch</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Her son was sick that day so she called in that morning and wasn't able to be there.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Overall we are so incredibly happy with the visit and the things we learned. Most of all, Oaklynn had SUCH a good time. She was so happy the whole time. Loved meeting new faces (mostly because they were talking TO her and she felt comfortable with them) and hanging out with Mom and Dad all alone. We will get a detailed report in the mail from the visit which will be good to refresh our minds of what was said.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We went out to lunch one day and next to us was a lady (probably in her 60's) sitting down eating by herself. She was done eating and was reading her book when we got our food. About half way through our meal, she leaned over and put her hand on my shoulder and said, "It was an honor eating lunch next to you guys today. Your daughter is so well behaved and I just felt honored to eat with you all." We thanked her and educated her about Rett Syndrome and gave her a "purple card" about Oakynn. It was so sweet that this lady went out of her way to let us know that she felt honored to sit by us. It brought tears to our eyes and we were so grateful to be Oaklynn's parents.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We did a few other things real quick before we had to head home and Oaklynn enjoyed all of them. Here are some pictures of our trip . . .</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We are so excited to go next year. I know that there are many things that we forgot to ask as it was all new to us and things were forgotten. We are SO GRATEFUL for the donations from others that helped up get there and learn more about Rett Syndrome and Oaklynn. Thank you all so much!!</span></div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com3tag:blogger.com,1999:blog-2972125005000627933.post-23821645924469434272013-02-11T15:24:00.001-07:002013-02-11T15:24:41.895-07:00Rett Syndrome on "The Biggest Loser"<div style="text-align: center;">
If you watch "The Biggest Loser", then you are aware that the contestant Dave has a daughter with Rett Syndrome. On the clip where he talks about his family, he says: "As for her mental capacity, she's between a year and eighteen months old mentally". I am ecstatic that Rett Syndrome is out there and more people are hearing about it. However, I want everyone to understand that Rett Syndrome does not cause these girls to be stuck at a mental capacity of 1yr - 18 months. This may be true for his daughter, but not for Rett Syndrome in general. It has been shown that these girls understand everything. They are smart and they are able to respond and answer you if you give them time. Because of their apraxia (inability to control their body/arms/legs) it may seem like they don't know how to respond correctly.</div>
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The only reason I am coming out and defending Rett Syndrome is because we want everyone to treat our girls like you would any other child their age, not like they are 1yr - 18 months. </div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-88760205095711308342013-01-21T08:02:00.000-07:002013-01-21T08:02:39.061-07:00Special Needs Education<div style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif;">I loved this months "Parents" Magazine. It has a child on the front who has spina bifida. She is using her beautiful gold shiny walker and has the cutest little smile. Inside the magazine was a short article where they interviewed the mom. This is an excerpt from the article:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">"Emily's mom, Elizabeth, told me at her [photo] shoot that one of the hardest things about being the parent of a child with a disability is when people stare from afar. Your child <i>feels</i> that stare. Elizabeth likes the approach little children take when they see Emily - they're curious, not judgmental, and they start a conversation." . . . "There's lots more we can learn about this (spina bifida) and other disabilities if, like kids, we just ask."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I try to tell people all the time that it is OK to ask. Some moms may be offended, but that will be very few. More mom's will be offended when you stare and don't say hi or ask questions. The worst is when a little kid will ask their parents something to the extent of, "Why does she rock back and forth?" or "Why is she hitting herself?" and then the parent responds with something like, "Just worry about your self." or "That's rude. We shouldn't be rude like that."</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">What are you teaching your child when you tell them to worry about themselves and not be curious about another child? You might as well say, "That child is different, so we need to not talk to them. We should just treat them like they are different." It's OK for a child to be curious. It's OK for them to ask questions and wonder why a little girl is doing something different than most kids. It's OK for them to ask why they are in a wheelchair. Embrace your child wanting to learn about other kids, it will help them in the long run. They will run into many kids that are different throughout their life. You should teach them while they are young that we are all the same on the inside.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I have talked to many people about how they need to ask questions about a child if they are curious. Educate yourself by learning about other kids and asking! Most people say that it's hard to get the courage to just straight up ask a question because they worry that a parent may get offended. Know that if they do, it's just them and the person they are. You did nothing wrong. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">It's also hard to know how to ask questions or word them. Starting off a conversation with, "What is wrong with your child?" would make anyone upset. It's all about how you word your question. You can say, "I know a little girl, Oaklynn, who also rocks like that. She does that because she is a sensory seeking child. Is your child sensory seeking?" You always want to ask a question in a way that sounds like you really care. If they respond with a simple, "yes" or "no" and don't elaborate then they are the few that do not want to talk about their child. Most parents (like myself) will be thrilled that you want to learn more. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Once Oaklynn was diagnosed with Rett Syndrome, my sister and brother in law sat their kids down and taught them all about what was going to happen to Oaklynn. How she is going to be different and do things different, but she understands everything and has feelings just like any other kid her age. Their kids asked questions and learned all about Oaklynn. It was GREAT!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I also have another sister who is primary chorister in her ward at church. She put a little slide show together, on her ipad, of Oaklynn and taught the kids a song about being different while using pictures of Oaklynn. Once the kids knew the song, she recorded them singing it to Oaklynn and later showed her the video. She was all smiles!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">I encourage everyone to take the time to teach your kids about children with special needs. You don't have to have a family member with special needs in order to teach them. Show them a picture of Oaklynn and teach them that there are some kids that can't talk/walk/move. That there are kids who can't control their body or may do things different. Once you teach them about it, they wont treat special needs kids like they are different. They will treat them like any other child, and that is what we need.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Please feel free to ask me questions . . . ANY QUESTIONS. I do not take offense to questions. Just be careful when you ask them. I have had many people ask what Oaklynn's life expectancy is. I am totally fine with that question (I would be curious too if I knew nothing about it) but please be careful of when you ask that question. I will not answer any questions like that if Oaklynn is with me. So also remember when you are asking someone questions about their child, that even though it may look like their child doesn't understand, they probably do. So be careful about what you ask in front of the child.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Please share this post with others so that they too may feel more comfortable with how to approach the mother of a special needs child. Let's educate more people!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">(If you know of someone you have been wanting to approach to talk to them about their child, but don't know how . . . feel free to send me a message. I'll help you come up with an appropriate way to talk to them. I know that sometimes it's not that you don't want to talk to them, but more that you don't know how to start the conversation)</span></div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com3tag:blogger.com,1999:blog-2972125005000627933.post-41549955723086789842013-01-15T16:02:00.000-07:002013-01-15T16:02:47.700-07:00I will be with thee<br />
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<span style="font-family: Trebuchet MS, sans-serif;">This post below is written by Austin (Oaklynn's Dad)...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I wanted to share an Old Testament story and my testimony with our family and friends because there are a few of them close to us who are struggling right now. I can't began to claim that I understand what some of them are going through right now but I hope I can help them look to the Lord for guidance and provide a little hope to get them through the day...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The story of Moses helped me a lot on my mission when I was struggling. My mission, even though it was a short one, is something I cherish. This story meant a lot to me because we were asked to do something that is very difficult and sometimes we felt alone. We had to find people (sometimes perfect strangers) and ask them to change for the Lord. I don’t care who you are, that’s hard to ask of anyone and it’s difficult to accept.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Moses was chosen to carry out a task that was near impossible. He was commanded to go into Egypt and lead the Children of Israel out of bondage from King Pharoah. Pharoah was ruler of an empire and had a legion that was innumerable at his command. Moses was one man (yes, he took Aaron), and was asked to go in and free the people.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">While receiving instruction from the Lord, Moses pretty much says he is nothing and that there’s no way he can do this; he’s hopeless: “… Who am I, that I should go unto Pharaoh, and that I should bring forth the children of Israel out of Egypt?” The Lord then says: “…Certainly I will be with thee; and this shall be a token unto thee, that I have sent thee: When thou hast brought forth the people out of Egypt, ye shall serve God upon this mountain.”</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Six, simple words of hope that I will not forget: </span><i style="font-family: 'Trebuchet MS', sans-serif;"><b>Certainly I will be with thee</b>…</i></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I like to think the Lord is being slightly sarcastic here saying: <i>Come on Moses, you know I’m always with you… </i>I have no doubt that this attitude is directed towards us today. Remember, the Lord never changes. He is certainly with all of us today; holding our hand and picking us up as we struggle through the difficult times. I believe this is the essence of the Atonement. It’s there for us to use and I pray that those struggling will see that.</span></div>
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<span style="color: #2a2a2a; font-family: Trebuchet MS, sans-serif;"><span style="line-height: 17px;">Finding out about Oaklynn’s diagnosis was one of the hardest things we've gone through. Not only did we learn that she may never walk or talk but we also learned that there’s a possibility she may not be with us for very long. I can’t imagine waking up a day without her… That ripped a hole right through our hearts but every giggle and smile from Oaklynn mends that void. One day, through faith and love, the Lord will completely patch us up and we will be whole again through the Atonement. The six words above have personally helped me to keep moving. Sure, there are difficult days; Whitney and I still have a good “cry session” here and there, but it gets easier. The Lord has taught us how to live with these facts and focus on what’s truly important: being together in the end…</span></span></div>
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<span style="color: #2a2a2a; font-family: Trebuchet MS, sans-serif;"><span style="line-height: 17px;">I want my siblings to know they’re not alone, even though they may feel like that all the time. There isn't anything the Lord won’t do for you. Look to him often and trust in what he’s doing. Please continue to look to your family for help as well. The family is in the center of the gospel for a reason: we were never meant to travel this road alone. Whitney and I along with our angels love you very much and pray that you’ll find some comfort soon.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuCZ1QViflYCh17YsGXRmk_sFerv5dohl4DuVhSH8twW3LVkNI9Qbqdum877WzfEzxBKLxHWdrLoUqUUMX0ocDeffsbXrvtzgzp_4U_p_FHePSpUxCeKM93Bcszv4JTsSAP8ctCqQoyGw/s1600/Cooley+Family.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuCZ1QViflYCh17YsGXRmk_sFerv5dohl4DuVhSH8twW3LVkNI9Qbqdum877WzfEzxBKLxHWdrLoUqUUMX0ocDeffsbXrvtzgzp_4U_p_FHePSpUxCeKM93Bcszv4JTsSAP8ctCqQoyGw/s320/Cooley+Family.jpg" width="320" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">(Picture above is Austin's Dad, his wife and siblings. Picture was taken November 2011)</span></div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-44672108443430357932013-01-07T15:50:00.002-07:002013-01-07T15:50:31.579-07:00Ballet Bar<div style="text-align: center;">
We got Oaklynn a Ballet Bar to use for therapy purposes. I have always wanted a mirror in her room because she has always loved them since she was a baby. I couldn't find the right one that I could put low enough for her to see herself (since she can't stand on her own). I was searching online for something to help her stand and I came across <a href="http://www.achievement-products.com/Product/ProductDetail.aspx?product=49&keyword=infant%20coordination%20mirror&scategoryid=0&CategorySearch=&Brand=&Price=" target="_blank">THIS</a> Ballet Bar (they call it a coordination bar, but I think ballet bar is cuter). I immediately bought it for Oaklynn. I love how she can stand on her own by holding on and be able to see herself in the mirror.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQeLnbSIYNS0AnU2fK2rUg63kObYMxDYOkgKl6AIYy8MXZPZSh7JkjQHHtFs1qDolx3sYorWV4UfkyF2BE6OS0UX4PiLst9MIM91ZZ_gJaTqgQdFJqNlYkdvAr_Q-7MaMxiiuU5Sa2ZJQ/s1600/IMG_2441.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQeLnbSIYNS0AnU2fK2rUg63kObYMxDYOkgKl6AIYy8MXZPZSh7JkjQHHtFs1qDolx3sYorWV4UfkyF2BE6OS0UX4PiLst9MIM91ZZ_gJaTqgQdFJqNlYkdvAr_Q-7MaMxiiuU5Sa2ZJQ/s320/IMG_2441.JPG" width="239" /></a></div>
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Here is a video of her trying out her new bar . . .</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwtNTx5sav4tFpEWVbe5S0_L4BTQlKziDFdATUeXaU1UCqonL6UzAAzz7zOZme4YSJ6ggKtTPlx2eIuxnsk9w' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br />
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* * * Her giggles are so contagious * * *</div>
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Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com1tag:blogger.com,1999:blog-2972125005000627933.post-30949813644785402382012-12-21T15:59:00.000-07:002012-12-21T15:59:06.541-07:00"W" sitting<div style="text-align: center;">
Oaklynn lost a lot physically during the regression phase. What she can do currently is roll over and then from her tummy, push herself up to sitting. She sits "w" which is really bad for your legs. It's when your knees are bent with feet behind you, but your bottom is on the floor.</div>
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(below is her "w" sitting)</div>
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I have tried so much and couldn't think if anything more to do to help her. Finally I thought about putting her in a sleep sack that was tight so that she couldn't spread her knees apart. That way she could kneel but not "w" sit. I contacted my friend Brittany and asked if she could help me out. I sent her Oaklynn's measurements and this is what she came up with... </div>
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LOVE the fabric. Oaklynn loves bright colors, so that was perfect. Also, it is SUPER soft and Oaklynn is a sensory seeker, so she is loving the feel of it. And the best news is...</div>
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<span style="font-size: x-large;"><b>IT WORKS</b></span></div>
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She can still get up on her knees, but do you notice how she can't spread her legs apart to "w" sit? It's perfect!! Another good thing is that we can't put any blankets in Oaklynn's bed with her because if she gets it over her face, she can't pull it off. This helps keep her warm at night! We are so happy with it. </div>
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I am all about supporting small businesses so please show Brittany some love and let her know that Oaklynn sent you her way. Her Etsy shop is currently closed, but not for good. So stay tuned... she will be back.</div>
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Click on <a href="https://www.facebook.com/brittybird.etsy?fref=ts" target="_blank">THIS LINK</a> for her Facebook page, and <a href="http://www.etsy.com/shop/Brittybird?ref=search_shop_redirect" target="_blank">THIS LINK</a> for her Etsy shop page. </div>
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***** <span style="font-size: large;"><b>THANKS AGAIN BRITTYBIRD</b></span> *****</div>
Whitneyhttp://www.blogger.com/profile/14290306993145625705noreply@blogger.com3