tag:blogger.com,1999:blog-15625675695478705462024-03-13T21:41:36.328-04:00How Life HappensA blog about life, love and raising two daughters- one with profound hearing loss and cerebral palsy from a CMV exposure in utero.Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.comBlogger475125tag:blogger.com,1999:blog-1562567569547870546.post-62434174150172328972016-05-18T20:52:00.002-04:002016-05-18T21:07:20.812-04:00Thoughts on how my life events have made me more humanI used to think there was a right way and a wrong way to do things. Do A, then B, then C and all is right with the world. There is a natural order and a way things are supposed to happen and if you do it in that order then life unfolds....uncomplicatedly (yes, that is a word, I don't care what Google says).<br />
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Until it doesn't.<br />
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You do A, B, and C and then Y happens. And you start to ask Why? Why? Why? You start to question everything you know is true. Things just don't happen this way. You go through the motions of life. You wonder what the heck is going on. How your life was swapped with some life meant for someone else. You fight against it. You are in denial.<br />
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People come out of the woodwork and tell you about a friend, relative, cartoon character that had XYZ and then they got help and everything was fine. And you think to yourself on alternate days: Yes, we will get the help we need and everything will be fine. This will be a blip and we will be telling the stories that all is fine and we have no idea why we ever worried.<br />
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On the other days you think to yourself: We are getting help. But things will never be fine. Life will be be forever changed and fine is not a word that will ever describe your life. (Later, maybe much later, you will realize that fabulous is a much better word to describe your life - even though some days you would still classify it as frustrating)<br />
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And people with kids with different abilities tell you how having a child with different abilities is really a blessing. And you just think they are nuts. Why are they telling you this? You can't imagine the day that you will think what they are telling you is spot on.<br />
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Other people tell you about the poem <a href="http://www.our-kids.org/archives/Holland.html">Welcome to Holland</a> and you say nope. Not at all. We are NOT in Holland (author note: I've been to Holland more than once in real life so I can say this definitively). And you think then as you do now, F&*K Welcome to Holland. It's a great poem written by a (I'm sure) lovely Mother but it has nothing to do with me. So please, for the love of all things holy PLEASE STOP directing me to that poem. I find no solace in it.<br />
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You muddle through life like it's a dream and one day you will wake from it. You get no sleep and somehow have to function day in and day out day after day after day. You are numb.<br />
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You and your spouse may/may not be on the same page. And that can be hard. It can cause marriages to break up. It can cause other marriages to be stronger. Some days you think you are a mixture of both.<br />
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Most days you just think you need more sleep. Because everything seems better after a good night of sleep. But sleep is an elusive thing and you still manage to muddle through somehow.<br />
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And one day you stop fighting against your reality. You accept it because it's steamrolled you over and you just don't have enough energy to pick yourself back up. Because, yeah, there is the lack of sleep.<br />
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And you realize - WOW!<br />
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WOW!<br />
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Once you stop fighting it you think maybe, just maybe, this is a blessing. Maybe those people knew what they were talking about. Maybe the road less travelled is really quite beautiful.<br />
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And like many roads, part of the road is beautiful. And part of the road has some pot holes.<br />
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And I am thankful that there is wine on the road. Because, well, I like wine.<br />
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And I like my friends. And I am thankful that I have a lot of friends to help me navigate this road. And I'm thankful that those friends like wine, too. You know who you are - I can't imagine what life would be like without your support.<br />
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And then you know. The road less travelled has made you more human. You can relate to people more. You see people clearly. You find joy in the small things in life. Your life is more fulfilling and happy than you ever expected. You are a changed person and you can never, ever go back to the person you were before Y happened.<br />
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And then you know with 100% clarity that YOU DON'T WANT to. You don't want to go back to that person. And you no longer ask Why, but instead ask how did I get so lucky?<br />
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I thank God every day for the life that I am blessed to live. I thank God for the village that He has surrounded me with.<br />
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Here's to our human village. Here's to our family and friends and taking the road less travelled. Here's to being human.<br />
<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com4tag:blogger.com,1999:blog-1562567569547870546.post-52366016731985567382016-01-20T09:20:00.001-05:002016-01-21T09:15:22.748-05:00Martin Luther King, Jr. LessonsEmma is a Girl Scout this year - well, technically she is a Brownie. It's her first year of scouting and so far it is a huge hit with her! She loves going to the meetings 2x/month. The meetings take place at her school and there are about 20 girls from her grade in her troop. Chris or I always join Emma for the meeting so that we can help her fully participate but often her fellow scouts take over and include Emma without needing (or wanting) our help.<br />
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I wasn't sure how scouting would go for Emma. It's at night after a long day at school and she is usually exhausted at night. I wasn't sure how she would participate in the circle time, crafts and activities with her troop but knew we could modify things on the fly. Since she expressed a strong interest to join we decided to give it a go and I'm so glad we did!<br />
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Our last meeting's topics of discussion were the upcoming Girl Scout Cookie Sale (if you need a hook up with cookies or want to donate money to send cookies to our deployed troops, let us know!) and Martin Luther King, Jr. When the leader asked the girls what they knew about Martin Luther King, Jr. it was great to hear that they knew so much about him and others involved in the Civil Rights Movement. Our activity that night was to draw on one sheet of paper Martin Luther King, Jr.'s dream and then on another sheet of paper the girls were to draw their dream. During the activity a snack of Pirate Booty was served.<br />
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As is typical, Emma's friends sat by her side and offered to help her draw but Emma wasn't so interested. When I asked her if she had a dream she said yes. When I asked her if it had to do with school, she said no. Did it have to do with play? No. Etc, etc. Finally I asked her did it have to do with food? Yes. Her dream was to have me feed her more Pirate Booty. So funny - so Emma. Obviously, her dream was easy to make come true and it happened immediately.<br />
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While we were at our tables I shared with the girls how thankful I am for Martin Luther King, Jr. not only because I love that it ended segregation, but also that the Civil Rights Movement paved the way for the disability rights movement. Many of the protections passed as part of the Americans with Disabilities Act used the Civil Rights Laws as a framework. Until the ADA was passed on July 26, 1990 public accommodations for those with disabilities was not required. I can't imagine how our life would be impacted if we didn't have access to ramps or handicapped bathrooms at public places. Just 25 years ago these things were not commonplace. Today, we do encounter our fair share of challenges navigating our environment with wheels and that is after the ADA has been around for 25 years.<br />
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Martin Luther King, Jr.'s dream matters. His dream helped shape the America that we live in today and for that I will forever be grateful.<br />
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If I was drawing my dream on the Girl Scout sheets last week, it would be that people with physical disabilities would be able to go anywhere - including places not mandated by the ADA - without worrying that they might not have "wheeled" access. That our worries would no longer be that there might not be a ramp, parking or a large enough handicapped bathroom (no, they are not all created equal in size!), but that our biggest worries would be that we might not have packed enough sunscreen or snacks.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP9riY7NuXM8IOuG8FUQzaiw0fb6d2KAFe4dyJtYNBucFNCKMbQic2lJtqsPq3YuSrMmsHvYifVS9NQROXyl4GVdcB1B2V2JO-MDXALSCeEHcSom5w5_eoL8uiTa9OSic15tVwAA2Pszs/s1600/Julia+emma+roller+skating.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP9riY7NuXM8IOuG8FUQzaiw0fb6d2KAFe4dyJtYNBucFNCKMbQic2lJtqsPq3YuSrMmsHvYifVS9NQROXyl4GVdcB1B2V2JO-MDXALSCeEHcSom5w5_eoL8uiTa9OSic15tVwAA2Pszs/s640/Julia+emma+roller+skating.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Julia is on roller skates pushing Emma, who is also on roller skates and standing in her KidWalk gait trainer, around the roller skating rink at Emma's birthday party.</td></tr>
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Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com2tag:blogger.com,1999:blog-1562567569547870546.post-1514182305755313762016-01-14T13:19:00.000-05:002016-01-14T13:19:27.388-05:00Welcome 2016It's been a while since I've posted here. We've been busy. And not so busy. I work hard to try and find the balance between busy time and down time. Time to spend as a family and time for each of us to engage in our own activities.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8Ydt0Xw8yPDPBX8gZF99lhaN1B08Yg8B3lGZwnAwds28pFsS5wVE1Rbct3ZoLbYnIa8gy8PoNLgwi8jssSgEMZZk2J775iwX4qst8eASPnGpC_NtxpwMqjOtPChPdG-8zub1ffIyrm6w/s1600/Julia+with+trophy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8Ydt0Xw8yPDPBX8gZF99lhaN1B08Yg8B3lGZwnAwds28pFsS5wVE1Rbct3ZoLbYnIa8gy8PoNLgwi8jssSgEMZZk2J775iwX4qst8eASPnGpC_NtxpwMqjOtPChPdG-8zub1ffIyrm6w/s320/Julia+with+trophy.jpg" width="212" /></a>Julia continues to enjoy her Irish dancing and playing her violin. She moved up a level in dancing and is now competing at the Novice level. This means her awards are more trophies and less medals. She is happy about adding to her trophy stash that includes the Softball Championship trophy her team won in 2015. As for her violin, she sounds really good! I'm blown away with how good she is considering she has only played for about a year. She would like to add some private violin lessons to her schedule, and we are considering it, but in the meantime we plan on attending more of the children's Irish fiddle lessons that are given the 2nd Sunday of the month. She really had a lot of fun at the one we attended in December and hopes to make many of them in 2016. Her interest in running continues and she has participated in several 5K runs - mostly with her only training being playing tag on the playground. Oh to be young! This year she wants to put more of a focus on her running and she is just waiting for nicer weather to train with Chris. It seems Julia and I are kindred spirits in our fair weathered running bend.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9IA9NMmHM-MmMxEbFecdbAiC_TicpXHl-kmj4S1fMUPdQjtb_2OS-CfIzB7akp4kGey41KwwvyNdBdM5a3kn4lZFXm-B-2DJsbLy8ZKlw1rt-EuLGqgXmxFlGel25B4cO29dxDUEQ0PU/s1600/Emma+Softball.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9IA9NMmHM-MmMxEbFecdbAiC_TicpXHl-kmj4S1fMUPdQjtb_2OS-CfIzB7akp4kGey41KwwvyNdBdM5a3kn4lZFXm-B-2DJsbLy8ZKlw1rt-EuLGqgXmxFlGel25B4cO29dxDUEQ0PU/s320/Emma+Softball.jpg" width="320" /></a></div>
Emma continues to ride her horse every week and loves her time at the farm. She rides after school at a time when she is normally exhausted (school gives her a huge workout and she likes to lay stretched out and relaxed for a bit after her full day) and has been holding herself up nice and straight showing us that her stamina is really improving. She played Challenger league baseball again in 2015 and is already signed up for this year. We've taken a break from therapies outside of school and we all are enjoying the break. This year she is participating in CCD class and makes her First Reconciliation this month and will make her First Holy Communion in April. This is a big year for our girl and it's so good our church was able to work out a class option this year that is wheelchair accessible so Emma can participate in class with some peers. Last year we homeschooled for CCD and it wasn't as much fun for her. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJXtMPxnwLv5ya_NSJpavXI0Y_geiSUE0FdxZ9Y6qS74b5wRFSvZEYp7as-ioU6wru0EqeIsFSIdVj1eJKOi4HloLF5XS1yi7xMknCK7gKdiT7VsH1x5-L4vgGTBcaPaHhTCUd0utJz_8/s1600/Chris+running.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJXtMPxnwLv5ya_NSJpavXI0Y_geiSUE0FdxZ9Y6qS74b5wRFSvZEYp7as-ioU6wru0EqeIsFSIdVj1eJKOi4HloLF5XS1yi7xMknCK7gKdiT7VsH1x5-L4vgGTBcaPaHhTCUd0utJz_8/s320/Chris+running.jpg" width="320" /></a>Chris completed another marathon in the Fall and was pleased with his time. He has been training hard and was able to shave off a significant amount of time from his past marathon results. He also participated in a lot of 5Ks around our community and he did many of them pushing Emma in her jogging stroller. Emma LOVES to run and has huge smiles for the fans cheering them on. She loves to run fast so is happy that Chris has mostly taken over running with her since I run much slower. He also coached the school Cross Country team in the Fall. He enjoyed coaching the kids to reach new personal best times during the season and is hoping to be able to coach again this year.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdqXxDzCB2ZWA8NvMIm4Kc_uzk7JpRuIcIqMrx9NL_ciFqPb6QewmJQLOhDUYfcRX1HB49FTV_oajavWBMp0txrekr-YDHBrbDDnx3QSI6ZGMg31ihlWSQktvaPcckgUBtTkPZSn4T5pk/s1600/Kristina+in+blue.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdqXxDzCB2ZWA8NvMIm4Kc_uzk7JpRuIcIqMrx9NL_ciFqPb6QewmJQLOhDUYfcRX1HB49FTV_oajavWBMp0txrekr-YDHBrbDDnx3QSI6ZGMg31ihlWSQktvaPcckgUBtTkPZSn4T5pk/s200/Kristina+in+blue.jpg" width="200" /></a>I'm still working on my photography skills and am happy to say that I now see a definite different in the quality of photos I'm taking lately. I joined the local camera club and have been attending meetings and going on some of the meet-ups for shooting and it's been a lot of fun. Our computer lived a long life but retired itself in the summer. I was without a computer for a little bit and am now happily running on a new iMac that is able to run some more powerful programs for photography processing. I've taken the plunge into Lightroom for organizing and editing my photos and it's a steep but fun learning curve. I continue to run at a slow pace - faster than those that are sitting on the couch, though! - and visit the gym for the classes a few times a week to make sure that I'm fit to keep up with Emma's growth!<br />
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2015 was the year we became smitten with Zoe (Julia's cat), fell in love with all things Harry Potter, achieved many goals we set for ourselves, and focused on having fun together outdoors.<br />
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2016 is sure to bring some major changes to our life! There are quite a few things in the works that have us excited already. I'm hoping to share more of our adventures this year than I did in 2015. I needed some time away but find that I miss capturing the highlights of our year and am looking forward to getting back into blogging again.<br />
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Let the adventures begin!Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com3tag:blogger.com,1999:blog-1562567569547870546.post-25028785581822629562015-02-06T12:31:00.000-05:002015-02-06T12:31:31.918-05:00A communication journey - lengthy update on AAC progress to date! Communication. <br />
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Emma has many physical challenges and she doesn't let them dampen her positive, happy spirit and so we don't let them dampen ours. <br />
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But.......as her Mommy, the one thing I have the hardest time with accepting is the limited communication Emma has <i>because of her body</i>. <br />
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I know that her mind is sharp and she has so much she wants to say but her mouth muscles can't easily form words. Her arms don't work well making it almost impossible for her to do even the most basic American Sign Language (ASL) signs. She cannot get up and walk across a room and pick up what she wants and show you. She cannot go over to the fridge and pull out food or drink to let you know she is hungry or thirsty. <br />
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Emma can use her smiles and cries to help you figure out what she is thinking. She can use gross body movement to indicate her level of excitement or protest. She can use her eyes to focus on something and try and use the Jedi mind trick to bring the item to her. <br />
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I often imagine what it must be like to be trapped in a body with a
fully functioning mind without a robust expressive means of communication. It's
scary just to even imagine it. If you are the parent of a child that is
living like that, it's the thing that will keep you up for countless
hours at night scouring the internet for ways to give your child an
expressive means of communicating. It will have you seek out people that <u>believe in your child the way you do</u> and are willing to trial lots of options and equipment to see what will be the best communication fit for Emma. <br />
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At the most basic level of communication you want to give your child a Yes and No option. At the very least you desire to use it as a way to figure out why she is crying. <br />
<ul>
<li>Are you hurt? <i>Yes or No</i> Is it your leg? <i> No</i> Your arm? <i> No</i> Your foot? <i>Yes </i></li>
<li>Do you want to go outside? </li>
<li>Are you hungry? Do you want a yogurt? Do you want a pudding? </li>
</ul>
It's really quite amazing how much active communication you can have with just a Yes and No option. <br />
But.......we want more. A Yes and No option does not allow my child to initiate a conversation. To tell me that she wants to go to the store, that she knows her ABCs, knows simple addition, subtraction, and all the 3D shapes. That she loves to read books and her favorite colors at the moment are pink and purple. It doesn't allow her to say Hi to her friends, to tell them she went to the movies over the weekend and saw Paddington Bear, that her sister got a cat for her birthday and she loves when the cat jumps up on her lap so she can pet her fur. To tell us that she wants the first Valentine's Day card she makes to go to Connor and she wants to sign it XX, not XO. Definitely NOT xo! That she wants to go swimming with her friend Helena or wants her friend Sammy to come over. <br />
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These are all things that Emma wanted to tell us, that she can tell us. That we now know because she is getting more proficient at her Eco2 with Eyepoint (the Augmentative and Alternative Communication device she has been learning for the last 2 years). <br />
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It's slow. S...L...O...W going on getting her up and using her device. There are days when I wonder if we are wasting our time. If she will ever want to use it freely without a lot of urging from those around her to use it. It is hard. She uses her eyes to navigate and it takes a lot of stamina and determination. I've tried it and it's HARD work to use your eyes to talk. <br />
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At first Emma chooses to use her device at home and only to tell us she wants to "Go Outside". Always outside. Then she starts to tell us she wants to eat or drink. She brings her device to school every day and chooses not to use it. It's hard. <i>She is young.</i> Everyone keeps encouraging her to use it and she sometimes says the weather is Sunny when asked and her teacher points to the Sunny icon for Emma to look at. Her speech therapist calls to tell me she needs to let the district know that Emma isn't participating in her sessions and is unlikely to meet her speech IEP goals for Q1 and Q2 reports. I worry about what this means. I remind myself that <i>she is young</i> and we are in this for the long haul. We have time to help her figure this out.<br />
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By January 2014, Emma is in the full swing of Kindergarten. She chooses to use her device more (but not often enough for my peace of mind) during her one-on-one sessions with her speech therapist. She rarely will use it with her friends. She sees no need to take her eyes off her friends who are active and fun to look at so she can stare at her computer screen to talk. She doesn't want to say anything that badly that would make her want to take her eyes off her friends to talk to them. She participates in her lessons and coursework using mostly index cards or manipulatives. <br />
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Emma is smart. She is really smart! Her entire team believes this and her reports often read that the results of her evaluations are likely understating Emma's abilities because she only participates in them when she chooses and often chooses not to answer. It's hard to answer questions. It's hard to aim your hands and arms that don't move so well to pick the right index card out of a field of three. It's hard to keep your head up to answer questions with your eyegaze when it takes so much energy to hold your head up and you would rather save that energy for driving your powerchair around with your head or looking at the funny antics that your friends are doing. Especially the boys - those boys are wild and funny and Emma can't get enough of watching them and laughing with them and the boys love her as an audience. Emma is a very popular friend in Kindergarten and she sees no need to answer questions posed by adults. <i>She is young</i>. Only six years old and she much prefers the company of her peers than adults.<br />
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A year goes by and by the time Emma is graduating from Kindergarten she is using her device a lot at home and sometimes at school. She is making choices from low tech communication options - index cards, eye gaze board, dry erase board, etc. and we know that she is learning a lot in Kindergarten. She knows her letters, numbers, number sequence, can tell time, do basic addition and subtraction. She will only do this for a few people, though. She doesn't want everyone to know all that she can do.<br />
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Summer comes along and she attends summer camp at a special school where all her campmates use talker devices. They talk A LOT. I hope that Emma will learn by their example and learn to use her device better before she starts 1st grade. They ask Emma questions and then ask the teachers why Emma won't answer their questions. Emma takes it all in but doesn't choose to use her device. Slowly...slowly, she starts to use her talker. During lunch she tells them what she wants to eat - pudding, main meal, Nutella. She tells them she wants to drink. She doesn't often share her news from home but she does sometimes. She uses her device at home more effectively. She is navigating between menus quite a bit and finding the words she wants to say. Summer ends and Emma is slightly better at using her device but is not as good at it as I had hoped. <br />
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We are thrilled at all that Emma can tell us and that she is no longer limited by a Yes and No and are hopeful that she will continue to make progress with her communication. I remind myself: <i>She is young. It will come. We are in this for the long haul. </i><br />
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We go on vacation to Ireland and leave her device at home. We have fun and Emma is not a bit bothered by the lack of her device. We are all happy just to relax together without a time schedule, appointments or extra equipment to lug around. When we come home she giggles when we power up the Eco2 and she is ready and willing to use it. The break did her good and renewed her enthusiasm for talking with her eyes. She starts to talk - a lot! We now want to have it on at all times for her since she is pretty chatty with it. She talks at home when it's just us and sometimes when we have people over. We have it up and on when we go to visit friends so Emma can talk to them but she doesn't often look at it. She would much rather look at all the activity and smile and answer questions with her Yes/No hand signals.<br />
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Emma is starting a new school for 1st grade. New teachers, new aid, new therapists. Her speech therapist will remain the same as Kindergarten, though, Praise God! Emma does NOT do well with changing out people. We visit the school again and Emma uses her talker to tell her teachers about her trip to Ireland. It's the first time they've seen her use it as she has mostly ignored it during previous visits. They are excited to work with Emma and we leave the device for a couple of hours so her speech therapist can train her team on how to use the device before Emma shows up at school for the first day of 1st grade. I'm thrilled at how excited they are to work with Emma. <br />
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There is a lot of positive energy in the room and Emma seems excited with her new school. It's the local elementary school. She will be mainstreamed with her neighborhood kids and she will be in the pull out classroom for math and language arts. It will be the standard district curriculum but will go at a bit slower pace which will be good for Emma given that she needs some extra time to process what she is hearing (she hears with cochlear implants) and then get her motor plan together to respond. <br />
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Emma is thrilled with her new school. First grade is the BEST! There are so many new friends and everyone at school knows Emma. When we are out in our community many, many people say Hi, Emma! and I have no idea who they are. Emma knows so many people and her community has embraced her fully. This is what we wanted. She is very social and is doing well with all the social parts of school. She has convinced her teacher that she doesn't know what a number is and has no idea what these letter things are she keeps referring to. Sight words?? She pretends she doesn't know them. She refuses to look at her talker. She smiles and is engaging and everyone really loves being around her. She continues to do well with her talker with her speech therapist who knows how clever she is and knows how Emma can navigate her talker but decided to keep mum about her knowledge to everyone else. <br />
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I read the reports of her day in communication notebook. There were pages written but the gist is usually: Emma was smiley today, enjoyed watching the boys, didn't want to answer any questions. Her teacher consulted Emma's previous teachers and sought out new reading programs. She celebrated every attempt that Emma made to participate and hoped it would encourage her to participate more. Emma had some really good days where she would pay attention but most days she just did what she wanted and chose not to participate. One day Emma even refused to open her eyes to read the fun book her teacher was reading. Everyone continued to think Emma was taking the information in but they had no concrete evidence from Emma about what she knew. <br />
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At home, Emma uses her talker to tell us more than ever. She was learning things at school - taking it all in - and telling us some of what she knew at home. I told her teacher she was doing a good job and to keep at it - it's going in and I know that because she is telling me at home and she will eventually let them in on it at school. She uses her talker a little bit when friends are over. She is getting chatty and we like that she can use her talker to express her wants/needs, communicate socially and participate in academics. We see progress on all these fronts at home - Slow and Steady progress. We wish it was faster but will take what we can get. After all, our child who is deaf and cannot talk is now able to tell us quite a bit of what is going on in her mind. She is REALLY, REALLY good at talking <i>when she wants</i>. She doesn't particularly care to chat with me if I want to talk and she isn't into it. I learn to be OK with that. <br />
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Christmas break happens and we are busy. We put on Emma's talker at certain times of the day meals, art activities. We aren't great at having it available at all times. One day Emma is unhappy and whining a lot. We pull out her talker and she tells us all kinds of things and is all smiles. We need to be good about having her talker available at all times. She is so much better at using it. We have to figure out ways to have it at just the right height and distance from Emma in all different areas of the house. The main drawback of her device is it has to be positioned JUST SO in order for it to read her eyegaze correctly. We are still working on this but are getting better at it. It's a journey and we are all learning new things daily.<br />
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School starts back up after the break. Emma takes off! I get reports daily about all that Emma is doing in school. She is paying attention to the lessons. She is answering questions. She is telling the class her news from home. It is her turn to do the weather and she uses her talker to tell everyone that it is snowy. She spontaneously says Hi to some people. She says her classmates names and participates in reading comprehension questions. She does math and answers using her device even when she is given the option of answering with index cards. They work on sight words and Emma uses her talker to say them. Some words I don't know where they are on the talker but Emma does. Al the free time of exploration we have given her with her talker seems to be teaching her where words are.<br />
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She has her FIRST REAL CONVERSATION with a friend. She say "Hi" and the child says Hi. Emma says "How are you?" and the child says Great, how are you. Emma says "I am good". I consider doing cartwheels around the house when I read that!!!!<br />
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Each day the note coming home is better and better. The words WOW! regularly show up. I am thrilled. I am worried. Will Emma stop doing this tomorrow? Will she go back to her old ways? I am cautiously optimistic.<br />
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Emma continues to use her talker at home. She strings several words together to form sentences. She uses it incessantly to say "Come" to Zoe our cat. Zoe ignores her then walks out of the room. Emma uses her device to say "Turn" so we will turn her chair around so she can see Zoe. I add the word Zoe to her names section of her talker. Emma says "Come" "Zoe". Zoe still ignores her. Emma says Zoe Zoe Zoe Zoe....I laugh.<br />
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I picked Emma up from school on Wednesday to take her to her horseback riding lesson. Everyone is all smiles. Her team is bubbling over with excitement and want to tell me how well Emma is doing. Emma is using her talker so much. She had a conversation that day with her art teacher and was telling her all about visiting her MomMom and things she did on the weekend. At the end of art class Emma didn't want to leave - she wanted to keep chatting. They had an assembly that day. There was a magician and everyone had to be quiet. Emma wanted to use her talker and they unthinkingly shushed Emma. Oh....my....gosh! Just - I have no words. They said after they did it they were like Oh My Gosh! What?? Did we just think to shush Emma? The child we are desperate to talk to us for ages? <br />
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Her teacher stopped me to say that when she did the 3D shapes with Emma and Emma correctly identifed all 6 of them with her talker - I think they are cube, sphere, pyramid, etc. - she kept thinking Oh my gosh what else does this child know? What else does she know? So she did some spelling words with her. She gave her one word and had her pick the letters from index cards from a field of 2. Pretty easy for a field of 2 but it was a new task and she wanted to start small. Emma spelled both words correctly. By the time they were on the third word Emma was done and wouldn't participate anymore. That's ok. We know. Now her team<i> knows</i> that what they are teaching Emma is soaking up like a sponge. And it's energizing all of us. Including Emma. <br />
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Emma has had a couple of off days recently. I'm chalking it up to a cold and her not feeling so fantastic to participate. It could be that Emma has gone off of participating but I don't think so. I know she'll have good days and bad days. <br />
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We are all truly excited.<br />
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Excited that Emma is becoming a more active participant of her school community.<br />
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Excited that Emma is energized by the increasingly challenging academics.<br />
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And excited to see what the rest of her 1st grade year will bring.<br />
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Bring it on!<br />
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Notes: Emma uses an Eco2 with Ecopoint device. She also uses a Yes/No hand signal. You can <a href="http://howlifehappens.blogspot.com/search/label/augmentative%20communication">click on this link</a> to read previous posts on our AAC adventures. You can <a href="http://howlifehappens.blogspot.com/2011/10/ask-me-question.html">click on this link</a> to read about our Yes/No hand signal. Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com3tag:blogger.com,1999:blog-1562567569547870546.post-58079923621437685642014-12-12T09:12:00.000-05:002014-12-12T09:12:30.053-05:00On parenting<div class="separator" style="clear: both; text-align: center;">
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I love being a Mom. Actually, I love, love, LOVE it. It's the most wonderful and hardest job I've ever had. Among my goals as a Mom is to raise girls that have good self-esteem,
are curious about the world around them, and leave the world a better
place than they found it. <br />
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Lots of times I don't really know if I'm doing this Mom job right or not, so my approach to motherhood is that I just go with my gut on hard situations and decisions. I find my gut has never let me down even if it tells me to do something I think is a bit curious.<br />
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This week Julia had her school book fair. She has become a voracious reader the past 18 months and I've been borrowing most of the books from the library. However, there are certain books she likes to read over and over again and she wants her very own copy for her bookshelf so it's there whenever she wants to read it. I completely understand this since I love little more than having my nose planted in a good book. We talked about her class visit to the book fair and decided she would take some money from her piggy bank and buy her books. This isn't because we didn't want to buy her books, it's more because we are teaching her about the value of money. We put the money in an envelope and sealed it up. There were several bills and a lot of change. <br />
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Judy Blume is her current favorite author. I loved Judy Blume as a child and find it enjoyable to revisit her books. As expected, Julia came home from school the day of the book fair full of energy and talking a mile a minute. She showed me the Judy Blume books she purchased and told me she also bought a book for Emma. A book for Emma! That she purchased with her own money. She made sure to tell me and Emma that it wasn't a Christmas present because she already bought and wrapped that at the school holiday fair. No, this was just a book she wanted to buy Emma because she thought she would like it. And Emma grinned from ear to ear when she showed it to her. It's an early reader book and is about a girl that rides a horse and Julia just knew she had to get it for Emma. She didn't bat an eyelash about spending her own money she took from her own piggy bank on the book. For her sister. Instead of buying the two books by Judy Blume that she wanted.<br />
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There was a bit of a wrinkle, though. Julia was a few cents short for the two books mostly because she decided to bring coins instead of a bill for the last dollar and didn't bring quite enough coins to add up to a dollar. So she put the books on hold and asked Chris at the end of the day if he could go with her to purchase the books and lend her the extra 10 cents or whatever it was and of course he did. While there he decided he wanted to buy her a book and so she was able to get the second Judy Blume book. It's not unusual for Chris to buy a book for the girls at the book fair but I don't think Julia thought of that because she was genuinely thrilled about it. <br />
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My heart feels full in these moments. The moments when I realize my little girl cares so very much about her sister that she decided on her own to buy her a book from the book fair just because she thought she would like it. When she wasn't selfishly thinking of how many books she could get only for her and how she realized in the moment how much fuller life is if we share. It's moments like these when I say a prayer of thanks to God for bringing my two special little girls into my life. And it's these little moments that make me feel like Chris and I are doing a pretty decent job at this parenting gig. <br />
Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-48138924921409741762014-09-22T22:26:00.000-04:002014-09-22T22:26:06.737-04:00Fall OverviewToday is the first day of Fall. It's my very favorite season. I just love the chill in the air, the cozy feeling of a sweater in the morning, the availability of pumpkin spiced coffee, the changing leaves. I don't enjoy the shorter days or the hectic schedule that comes with the back to school scene. <br />
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This year both girls are in full-time school. Julia started third grade and she is getting so very mature. She is turning into a bookworm and devouring books at an astonishing rate. It makes my heart sing to catch her cuddled up on the couch with a book in her hand or have her beg to stay up a few more minutes so she can read just a little bit more. She still has a silly side and is allowing that to come out in public more often. It's nice that she is letting the world see a bit more of her captivating personality instead of saving it for home. This year she continues her Irish dancing and is adding in violin lessons at school. Seeing her leave two mornings a week with her backpack and her violin makes me smile - it's a seriously cute site!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy4kms7o93QCJKHSCAyG9-Be3qHINbgAfJegxhIb8V2apZgiU_suOqWJ76K7GcFrZ2kMVYQP3pTOlS3GEcjwZBhZRAej8qlWaqz1aQ6v69TGSBCKOf0LeuGWeNv49ruikzaA29yLyxdgk/s1600/IMG_6341.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy4kms7o93QCJKHSCAyG9-Be3qHINbgAfJegxhIb8V2apZgiU_suOqWJ76K7GcFrZ2kMVYQP3pTOlS3GEcjwZBhZRAej8qlWaqz1aQ6v69TGSBCKOf0LeuGWeNv49ruikzaA29yLyxdgk/s1600/IMG_6341.jpg" height="320" width="240" /></a>Emma is in first grade at our local elementary school. She has a great team helping her succeed in a mainstream setting. Some days are going great, some days she isn't interested in participating. That is our Emma. With the exception of her speech therapist her entire team is new. Emma takes a LONG time to adjust to new people. I'm praying that she starts to settle in soon and show them what she knows. <br />
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I continue to focus on getting myself in the best shape of my life and that means I've been running and taking classes at my gym more often than not. With the girls back in school it leaves me some free time each day to get in a workout. I'm even strongly considering doing a triathalon with Emma in May. That gives me more than enough time to prepare. Emma loves joining me in my workout sessions. She is a great little motivator when it would be easier to cut a workout short. I also have a neighbor who joins me for the evening and weekend workouts. I love having a partner to workout with as it pushes us both to go a bit further or faster or workout on a day we would rather skip. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiI3vt089UE5MfzzD4s2-WhEZzNYDWx5abMpthMV_y8oRSvxsE3i6qM70q0nQ1q8XdSbJahZYzLFXAfAGHa9XeF23BwW9LDJNqfQCLKqs-_gaChC1ThHg4RBrPKds9wNBBX2mY_KiVu_U/s1600/IMG_6431.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiI3vt089UE5MfzzD4s2-WhEZzNYDWx5abMpthMV_y8oRSvxsE3i6qM70q0nQ1q8XdSbJahZYzLFXAfAGHa9XeF23BwW9LDJNqfQCLKqs-_gaChC1ThHg4RBrPKds9wNBBX2mY_KiVu_U/s1600/IMG_6431.jpg" height="320" width="240" /></a>We purchased a new bike trailer for Emma and she loves it! I'll do a review on it soon, but for those who are wondering it is the Chariot Cougar I and a link for it is here: http://www.rei.com/product/867690/thule-chariot-cougar-1-stroller-with-strolling-kit. The verdict is still out on how long it will be before she outgrows it, but it is working for now. I'm planning on doing a 20 mile bike ride to fund raise for Cystic Fibrosis in a few weeks and was hoping to trail her behind me but the lawyers associated with the even aren't keen on that idea. Luckily, the triathalon I'm training for is all ability friendly. For more information on it, check the details out here: http://gotthenerve.org/race-information/<br />
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With the girls back in school and *mostly* settled in, I've decided to look for a part-time job with flexible hours so I can still be available to drive Emma to appointments and therapy sessions and consult at school as necessary. I found a few positions that really interested me but I might not have interested them enough. I am confident that when the time is right a job will come along. We are also still navigating the real estate market. We put our house up for sale a few months ago when our tenants moved out but so far we haven't had any offers. We will likely put it up for rent again if we don't get any offers soon. <br />
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And I'll leave you with a photo I snapped last week after Emma's horse lesson. This was at the end of the half hour session. She did the best riding I have ever seen last week and after a full day of first grade at that! My girl never ceases to amaze me.<br />
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<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-25038584054158759452014-07-16T23:04:00.002-04:002014-07-16T23:04:45.604-04:00Learner's PermitEmma has been spending a lot of time in her power chair now that we have the fancy new minivan to help transport it. She is getting really good at driving it and I've started to let her drive herself around indoors in areas where there is a lot of room - like Target, hospitals, the mall, etc. These are harder areas to navigate since there is not as much room for error as there is with the great outdoors and Emma is rising to the challenge.<br />
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Here are some videos taken of her driving. <br />
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The first one is from April and we were in Target. You can see she isn't driving much and had a harder time hitting the switches in her head rest to move the chair. We adjusted the head rest a bit and it helped her get better with driving. <br />
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The second and third are of her driving in the hospital hallway while Julia was doing a physical therapy session. As you can see she is doing much better and is interested in getting up close to things and touching them. In the one video she stopped at the wall and touched it and the railing. She is very curious about touching things since she now has the power to do that in her power chair. I had no idea she wanted to touch so many things or I would have had her touching things before! <br />
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I have more videos of her outside but the computer is slow today. Right now we are at the point where she can drive from the back of our driveway to the front. This is major progress. She also has been driving around outside near the kids when they are playing without running them over (mostly....I keep the kill switch close at hand to ensure no casualties!). The one thing she keeps wanting to do is drive out in the street so we are working on teaching her no street. It's funny - she is going through the same stages using her power wheelchair that toddlers go through when they start to walk. They bump into things and learn how to avoid bumping into things. They try and run in the street and {hopefully} learn not to go in the street. They run away when parents tell them to come here and Emma is doing all of this. When it was time to come in the other day and Chris told her to drive to the back of the house Emma drove in the other direction because she didn't want to come in! And she gets mad when we take control of the chair to move her somewhere she doesn't want to go. Emma is starting to get the hang of navigating herself in this world and it's so wonderful to see!<br />
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Of course, when there are people to be watched she often comes to a dead stop to observe all the going ons but even that is starting to get better, too!Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-84963558152838513562014-07-09T22:29:00.001-04:002014-07-09T22:34:42.761-04:00Warp SpeedWhere to start??? Maybe I should update the header to reflect the scorching temperatures we are seeing now rather than the blizzards we had in the winter? Not tonight...<br />
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This spring flew by at warp speed. Here are some highlights:</div>
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Julia made her First Holy Communion and we had a gathering of friends and family at our house afterwards to celebrate the big day.</div>
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Julia's softball season and Emma's baseball season ended on high notes. Both girls loved playing with their team and enjoyed all the action associated with it. They also enjoyed the snack bar at the field, as did nearly all the other children that attended games from what I could see!</div>
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Julia completed 2nd grade and is now officially a 3rd grader. That time sure is going by fast! So fast, in fact, that I didn't get an individual last day of school photo - gasp :-) I did manage to capture a last day of school with one of her best buddies while they were all smiles. Her buddy is moving to a different school next year and the day turned to tears since they will miss each other. We assured the girls that we will continue to plan play dates and have had a couple including a sleepover already. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7aiqO_HIBEPU25OgG6yVIwsnoiuFidI7nxyxU3hL9woFTydgjk3a9lKKx-WOvVH4ioRZ9oKgUof4bSZJIXEsS2suRZEVDuw-dT9J-OXJwMfNW1ULXgs40-aLgOFA0HNwswPg4Gw8z-FM/s1600/IMG_5296.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7aiqO_HIBEPU25OgG6yVIwsnoiuFidI7nxyxU3hL9woFTydgjk3a9lKKx-WOvVH4ioRZ9oKgUof4bSZJIXEsS2suRZEVDuw-dT9J-OXJwMfNW1ULXgs40-aLgOFA0HNwswPg4Gw8z-FM/s1600/IMG_5296.jpg" height="320" width="240" /></a>Julia started making her "special desserts" after dinners. One night she made strawberry shortcakes and it quickly turned into some fun with our food. I love silly second - oops, third! - graders!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobrz6fz9pgBdWvPECwWE5wlUIvifw0UvKHernSjrhXEsur65wwOpflZCJMSiKYbIvt-H8LV13k2Cg0dB0lqhsCbtyYKVWFQPGKjHaixZf2TcSHC2ZX0uiYc8teU45dnXluqDhae9zkfo/s1600/IMG_5294.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjobrz6fz9pgBdWvPECwWE5wlUIvifw0UvKHernSjrhXEsur65wwOpflZCJMSiKYbIvt-H8LV13k2Cg0dB0lqhsCbtyYKVWFQPGKjHaixZf2TcSHC2ZX0uiYc8teU45dnXluqDhae9zkfo/s1600/IMG_5294.JPG" height="240" width="320" /></a></div>
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Emma graduated from Kindergarten. She will start 1st grade at our {more} local school in a mainstream classroom and will have her language arts and math classes with the children in the learning specialist classrooms. It covers the same curriculum as the classroom but goes at a slower pace which will allow more time for Emma to hear and process the information through her CIs and then respond at her slower pace due to her slower motor control. We are praying that her 1:1 aide will be hired by the district to work with Emma again, but that is very much a prayer at this point in time. Emma did a tour of the school and met the learning specialist teacher and told us that she is "excited" about her new school. Emma is doing well with telling us her feelings on her talker - and that has me excited!</div>
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We found out that the tenants that were renting our old house bought a new one. We decided to list the house for sale again in the hope that are hoping for a quick and uneventful road to a sale and settlement. So far, it's not as quick as we hoped but we are still optimistic.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6wunq5Vl7t3yf14Hklux1G4AorjuOXGDrAwbghb2qnBAgO9i-_Ym5lkYdxjepXAjmtdHXOYzqzV7TWC_gwEPMPDIt1nxDoyYJFs1r8U14rpBIPU4NZuE7NnDk9YukTuSJF4tytIqj0r8/s1600/IMG_5334.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6wunq5Vl7t3yf14Hklux1G4AorjuOXGDrAwbghb2qnBAgO9i-_Ym5lkYdxjepXAjmtdHXOYzqzV7TWC_gwEPMPDIt1nxDoyYJFs1r8U14rpBIPU4NZuE7NnDk9YukTuSJF4tytIqj0r8/s1600/IMG_5334.jpg" height="320" width="292" /></a>I ran a 5K! Chris loves running and has been asking me for a couple of years to start running so he could cheer me on at the finish line. This year I have been focusing on my physical health and decided to go ahead and put aside my hate of running and surprise him by running a 5K race as a Father's Day present. I used the Ease into 5K program that is an app for my iPhone and only told him about it a week before the race. He didn't believe me at first and was really excited when he realized it wasn't a joke. After running for about a month I joined up with my neighbor and we try and run together since we run at a similar pace. We entered and ran the race together and probably had the biggest cheering section as our families came out to cheer us on! The girls joined in the fun by participating in the children's race that went off before the 5K. It's was a lot of fun and I'll probably enter another race in the Fall when the weather is a bit cooler.<br />
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We had the opportunity to go to a Phillies game with our support group from the hospital. We were able to spend some time on the field and meet a few players and talk with our host, Ryne Sandberg and his wife Margaret. They were so nice and easy to talk to and it was an amazing opportunity and fun night out! The Phillies won in extra innings - 5 extra innings to be exact. Needless to say we didn't stay for the entire game but were happy to hear we won when we checked in the morning. <br />
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We have also been busy checking out a couple new exhibits at the local science museum, attending summer parties, a fundraising event for a local charity, a family wedding and a couple wedding showers, along with spending long nights outside listening to the neighborhood children play and giggle and ask if they can stay out just a little bit longer. <br />
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Yes, our life is full. No wonder I haven't sat down and updated this blog! We are hoping you are having a similarly fun summer!</div>
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Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-19423596231858945732014-04-01T09:52:00.002-04:002014-04-01T09:52:47.984-04:00Our new Wheelchair Conversion VanBIG things are happening in our life. I feel so very blessed on a daily basis and know that many of the happenings are the result of letting God work His magic. <br />
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One BIG thing that happened is we purchased a wheelchair accessible van. WOWZA! We have been thinking and wanting one of these vans for a long time now but have not been able to find one that we can afford. The price tag on these vans are ridiculous for a minivan - up to $65K new and the used ones are typically upwards of $30K. At that price, we'll take two please! Ha!<br />
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We told pretty much everyone we know that we are on the lookout for a wheelchair van and our wonderful social worker forwarded me information on one that a local family was selling. It was a fairly new model - 2010 - and had low miles. It also had the rear entry option that we thought would work best for our family. There was a lot of details that we had to work out for us to buy this van since we were buying it from a private party, the owner was deceased and it was registered in a different state, but it all came together so nicely in the end. Let me just say that I have NO doubt that this van was meant to come to Emma. All along the way of us purchasing this van I could feel my Dad was at work...and Mom, too. Thanks, Mom! The owner of the van recently passed away and that is the reason the family was selling it. I won't get into all the details, but let me say that it became clear to both us and the sellers that my Dad and the original owner met up in heaven and arranged the whole thing. <br />
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And now we have a wheelchair accessible van!!!!!! A van that Emma loves to sit in more than she loves to sit in the driveway and watch all the happenings in the neighborhood - and that is saying a LOT. This van opens up a lot of opportunities for us with the most exciting one being that we can now take Emma places with her power wheelchair! As she gets better at driving her chair and is starting to enjoy the bit of independence that it gives her we want to expand her driving capabilities by teaching her to drive in areas with more people (like the mall). The van also lets us run several errands without having all the lifting involved with getting Emma in and out of her car seat and the chair in and out of the car. <br />
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NOTE: We were just testing how the chair fits in the car in the video above. We do have a seatbelt for Emma that attaches to the car in addition to her chest harness that is not shown in this video. <br />
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Since there are many different styles of wheelchair vans, I'll give a few details on our conversion for families considering which van will work best for them.<br />
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<li>We chose a rear entry. This seems to work best in our area since: 1.) All the handicapped spots at the places we go are frequently taken and we need to park in a regular spot and a side entry wouldn't really work for a regular parking space and 2.) We go into the city a lot and nearly all the handicapped meters are at the end of a block or before a driveway so no one can legally park behind us making it easy to use a rear entry option</li>
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<li>The second row seating has seats that flip up. If both seats are flipped up, then you can fit two wheelchairs in the ramp area. We always have one chair flipped down for Julia and that works great for us. Emma's manual chair is small so it can go right next to Julia if Emma is transported in her manual chair. Mostly, Emma likes to travel in her power chair and that is much bigger so it fits in the back section of the van. At first I didn't like Emma sitting so far back from me but she LOVES driving in the car in her power chair and I've gotten used to it pretty quickly and now don't mind it. We can also flip down the other chair in the second row and take along a friend or family member for a ride or we can put Emma's car seat there for long trips when we don't want her to travel in her wheelchair. </li>
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<li>The tie downs that came with the car are a belt style. I have to say they work fine but are a bit annoying for the frequency that we go in and out of the car. We are a VERY active family. There are other tie down options that are quicker to use and we think we might change the tie downs in the near future. Stay tuned.</li>
<li>Overall, we are highly satisfied with this van configuration so far (<a href="http://www.braunability.com/wheelchair-vans/vision-re/">click here to see the manufacturer details on the conversion in our van</a>). There are trade-offs with both side and rear configurations but this conversion seems to work better for us than I anticipated. Already I've been to several parking lots with no handicapped spots left and the ability to park in a regular space with the rear entry was a big help. </li>
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Side note: Several weeks ago I threw my back out doing laundry - not that I needed one but it gives me yet another reason to find a reason to hate doing laundry! It was so bad that I could hardly move for a couple of days. NOT a good thing to have happen when your job is Mom to a non-mobile cutie pie. I was seriously scared about what I would do should it not get better quickly. <br />
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Thankfully, several trips to the chiropractor and several weeks later my back is doing much better. I am very aware of how important it is to keep my back in shape for the long haul - Emma is only 6 after all - and plan to add in more strength training at the gym. This new van has already had a positive effect on my back!Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com7tag:blogger.com,1999:blog-1562567569547870546.post-38440272256987647302014-02-06T10:42:00.001-05:002014-02-06T10:42:14.269-05:00Dreaming of Sun<div class="separator" style="clear: both; text-align: center;">
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I have the most incredible husband. There are many reasons I can say this, but today I'm saying it because in a couple of weeks he is going to take me away from all this snow and ice to a tropical beach for a few days to celebrate my {recent milestone} birthday. Just the two of us. <i>Just the two of us.</i><br />
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This time away will be so good for us! We can sleep late, eat what others cook, swim with the fish (or to the wet bar!), and relax on a beach. We can reconnect with each other without a million interruptions, reflect on our last 10+ years together and dream about what our next 50 might hold. My hope is that we come back refreshed and ready to take on the controlled chaos of our daily life.<br />
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We are so lucky that we are able to get away. It's not easy to find sitters for my girls; our household isn't easy to drop into days. For a few hours it's pretty easy, but when it stretches into a couple of days it gets trickier. There are things to learn for Emma - how to work the CIs and talker, how to prepare her drinks and food, how to use the various chairs and potty seat, tips for going out and about. And then there is the matter of how to work our TV remotes :-) None of these are hard but they aren't always intuitive - especially the TV! <br />
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I'm planning on pulling together a how-to binder for the house complete with pictures. If I forget anything I'm sure Julia will be able to fill in the blanks. Sometimes I think Julia could run this household - maybe that's typical of first born children? Regardless, I'll feel better once it's done and will be able to relax easier on the beach with a fruity frozen concoction. <br />
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Julia is excited to have guests come and stay at our house and is happily anticipating her own adventures while we're away. Past experience makes me think Emma isn't as excited about our getaway but she should roll with it fairly well. The amount of time we will be gone should be just enough to recharge but not too long that I'll spend my time missing my babies. <br />
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Here's to warm weather, sandy beaches, and some alone time with my favorite man!Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-23586121288277079892014-01-30T21:06:00.001-05:002014-01-30T21:06:27.000-05:00AAC Update: Emma and her Eco2 with EcoPoint<div class="separator" style="clear: both; text-align: center;">
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Our journey continues with Emma's AAC device. <a href="http://howlifehappens.blogspot.com/search/label/augmentative%20communication">Here are some other posts</a> I've talked about what we are doing with her talker if you want to get caught up. NOTE: Emma also has a Yes/No response and low tech ways of communicating but for the purpose of this post I'm only focusing on her use of the high tech eye gaze device. </div>
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Emma is now 100% eye gaze again with her device. She decided that her hands weren't helping her talk like she wanted and agreed to look at the device again. This is a big decision on her part because we can't make her look at the device and you can't navigate it with your eye gaze if you don't look at the device. I consider this a great milestone for Emma. </div>
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When we received her talker we had a long discussion and decided to set it up for 60 1-hit Unity. That basically means it could show up to 60 icons at a time on the screen. Emma had some success with it but not enough. I saw her struggle with it and it was frustrating to her and me but I didn't really know what to do about it. Then we met up with another little girl in our area who is about the same age as Emma and uses a device (a MyTobii) to talk. She was saying all kids of things with her talker and actively engaged in conversation. It took my breath away! After talking with her Mom for a while I decided to change Emma's device to 45 1-hit Unity so there would be up to 45 icons on the screen at one time and they would be larger than the 60. The less icons, the larger the size of them. Her device can do anywhere from 45 - 144 icons at a time on the screen. My plan was to dial the number of icons back and make the bigger and more easily accessible for Emma and see what happened.</div>
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The 45 set-up had things laid out a bit differently than the 60 set-up so I spent a Saturday night changing up the icons to more closely match the 60 set-up. Emma had a lot of the locations memorized and I didn't want to confuse her with having the screen look very different. Plus I figured I'd like them in similar spots because if she moves back to 60 Unity it would be an easier transition. The 45 set-up seems to definitely make a different for Emma. It seems easier for her to actually activate the icon she intends. You could see her try so hard to activate it on the 60 Unity and get frustrated because she would activate an adjacent icon. </div>
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With the 45 Unity, Emma seems more relaxed and happier to interact with the machine. It seems easier for her, she is having more success in telling us what she needs, and she is stringing more words together. She is also using it during working sessions with her SLP at school and has even initiated some interactions with people on her talker. This is huge since she typically wouldn't use her device at school no matter how much her team encouraged her. </div>
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Here are some things Emma has done since we changed the device, although she isn't very consistent about it. I think that will come in time and for now I'm happy to see her start to tell me more about what is going on in her mind. </div>
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<li>She has started to chat more. She will often use it for several back and forth conversations.</li>
<li>She will use it to get our attention. If we walk away to do something or are in another room and she wants us she will say something. If she wants a drink and I'm preparing it she will select over and over and over again the same icon saying Drink Drink Drink Drink Drink similar from what you hear with impatient children! It's quite funny to me and always makes me smile :-)</li>
<li>At dinner one night she leaned over to the table and tried to grab her bottle but couldn't reach it. She used her device to say the following in under 30 seconds without me modeling what to say first. It still blows me away that she said this so quickly and appropriately: "you help drink you get drink get". I got her message loud and clear - she wanted me to help her get her drink.<div class="separator" style="clear: both; text-align: center;">
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<li>Someone came up to her in the hallway at school to give her a marshmallow snowman treat. Her aide told the person Emma doesn't eat them and Emma immediately said on her talker "don't eat" and gave the person a smile before starting to drive herself away down the hall in her power chair to her Kindergarten classroom. Her aide was so happy to tell me about that and I was thrilled to hear it. </li>
<li>Today when Emma came home from school I asked her how school was and she said "good". After she told me she wanted a drink I walked over to the fridge to get it and she thought I was taking too long so she said "I want my ". I returned around the time she said my so I finished her sentence with You want your drink? and Emma smiled big to indicate yes, that is exactly what she wanted. </li>
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All this has happened over the last month after a very long stretch of Emma refusing to use her device. I'm hopeful that Emma will continue to grow and use her device consistently enough to tell us how she feels (especially important to me because when cries I don't know what's wrong or if she is hurting), what she needs, what she wants, how her day went, who she played with, etc. </div>
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Emma has a long way to go before I would consider her conversational in a social setting but I am convinced she will get there and I think it will be sooner rather than later. Especially since we're going to set up some play dates with her friend with the talker. Emma was VERY motivated to use her talker after her interaction with her friend. We are also hoping to send her to the summer session at a local school that specializes in augmentative communication devices and power mobility to help prepare her to hit the ground running in 1st grade. </div>
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Initially Emma's school team was unsure about moving her to the 45 Unity. They think (as do I!) that Emma is very smart and that 60 Unity will give her a lot more opportunities to speak with less effort. I was happy to hear they think she is capable of the 60 Unity cognitively but I brought up the observations I've made around her use of 45 vs. 60 and that she needs to get some early and consistent success with the device to help her engage more. Since Emma doesn't use the device as good at school it was important for them to know what changes I saw at home until she starts to demonstrate the same things at school. We also talked about her diagnosis of cortical vision impairment since she received the device and we had her vision therapist weigh in on 45 vs. 60 icons in light of her most recent Ophthalmologist report. Given all this we decided to keep her on 45 1-hit Unity. </div>
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The daily reports over the last two weeks have been really good. All her therapists report that she is more actively engaged and focused. She is making a lot of progress in all things and not just communication. She is doing well at Kid Writing which is something I thought would be super hard for her. She is doing well with simple addition and subtraction. She is distinguishing between singular and plural words with >90% accuracy - something that is VERY difficult for someone hearing with cochlear implants. She is walking longer distances in her KidWalk indoors (she loves to walk outdoors but not as much indoors) and driving longer distances in her power chair. Emma is just full on right now. I know from past experience that these periods of rapid progress are often followed by periods of sustaining before she kicks into another period of progress again. </div>
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Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-7898849068396262082014-01-29T21:52:00.001-05:002014-01-31T19:10:14.212-05:002014: Thank goodness you arrived!I've been a bit quiet here lately and it's not for lack of things to write but rather that I've been focusing on other things at the current moment. <br />
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This year started off well - we spent New Year's Eve night at a hotel downtown. Chris and Julia made a pit-stop at the lobby Starbucks to fuel up for the night and we wandered over to Reading Terminal Market to look around and see the Christmas train display. Then we walked to Franklin Square Park for the family New Year's Eve celebration that started around 4pm with some light shows, a dance party and playground fun and culminated in a 6pm firework spectacular. We were able to meet up with Julia's friend and her family there and the girls were thrilled to see each other over the "long" Christmas break. Afterwards we went to the hotel, ate a very underwhelming take out meal and hit the indoor pool (which was colder than I would have liked!). On the bright side our room was amazing and the beds were super comfy. <br />
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We were not thrilled with 2013 - it was a sad year for us with losing my Dad and Finnegan and were more than happy to say good riddance to 2013 and ring in 2014. Speaking of New Year's Eve: In true 2013 fashion it had to go out with a thud. Our room was on the 19th floor of the hotel. I stayed with the girls to try and get them to sleep because Emma is NOT a fan of sleeping in hotel rooms and Chris was hanging out at the lobby bar for a drink. I finally got the girls off to sleep and started to doze off myself when the fire alarm sounded. It kept going off for about 20 minutes. Thankfully (?), both girls slept through it. Chris was in the lobby and they wouldn't let him up to the room - obviously - considering every elevator has a sign posted on it not to be used in case of fire. I was a bit panicked about the thought of carrying Emma down 19 flights of stairs in the middle of the frigid night with a scared Julia in tow. I stayed in the room hoping it was a false alarm since it occurred too close to midnight for me to believe it wasn't a drunk partier pulling the alarm. The talking, flashing hotel fire alarm said to stay put they were checking it out and then about 45 minutes later they said it was a false alarm. Chris was keeping me posted (via text) of the fire department activity in the lobby and after everything was cleared Chris came back to the room just in case anything happened again he would be there to help. Thankfully it all ended well and we had a good sleep after that.<br />
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On New Year's day we could see some of the Mummer's Parade outside our hotel room window so we decided to go and watch a bit before we left. It was fun to be a part of the parade and Emma loved every minute of it while Julia was ready to go home almost immediately. These two girls crack me up and couldn't be more opposites. They balance each other out so well and make life so fun. How blessed we are!<br />
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Here's to a Happy 2014!<br />
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<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-83783986718685025322013-12-29T21:22:00.002-05:002013-12-29T21:22:24.210-05:00End of year family photosBehind a camera lens I feel at home. But in front of a camera? Not a bit. It just doesn't feel natural to me to be in front of the camera. In order to ensure the girls know I was not only "taking" their photos but also there "participating" in the everyday and events that I found worth photographing, I've made an effort to make sure I'm in more photos in 2013 than in years past. And I'm glad I did! <br />
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Sometimes the photos were taken by others or by Julia who is showing quite a bit of interest and promise in photography. Other times I just put the camera on self-timer and had it snap away. If Emma was in any of those self-timer shots she would go into fits of laughter. I love when she has fits of laughter so I did that lots!<br />
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Christmas morning we took our annual photo after the opening of the presents. It's a little top centered (because I had limited time for the girls to stay put before playing with their new presents) but I love it. I love seeing the progression year over year of the girls under the tree and am glad Chris and I are in the photo. Taking our family "fresh off opening presents moment" photo is a Christmas morning tradition I treasure.<br />
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This year we had our family photo taken at a photo studio. It's been a few years since we had our family portrait taken and it felt like the time was right. The girls had a lot of fun, but BOY is it stressful getting everyone up and ready and to the studio to have the photo taken. Now I remember why it had been so many years between photos :-)<br />
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And this year I had our Christmas card include a photo of all of us together. Here is the photo from that card. I tried to scan the card and post here but it doesn't come out nicely so you are getting the card photo and just imagine the peace, love & joy message printed across it.<br />
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And there is a snapshot of how my efforts of documenting our <i>family </i>presence this Christmas season worked out. I think it's going well and I expect to continue my efforts into 2014. Life goes by so very quickly and it's nice to see photos of us all together throughout the years. Plus, I'm not getting any younger and might as well get photos in before all my wrinkles start to show :-)Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-26373061969647627472013-12-19T09:07:00.003-05:002013-12-19T09:07:51.838-05:00Christmas CheerOur holiday season has been moving at a nice pace this year. We have little planned on the calendar and that is leaving us plenty of free time to slow down. I'm not sure how that happened this year but it's a welcome feeling!<br />
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Julia had her winter concert (1st and 2nd graders) at school last week. The music director does such a fantastic job with the children and it is a highlight of the season for me. It's so fun to see the children on stage - wiggly ones, smiley ones, shy ones, waving to the family ones, finger in the mouth ones, full of expressions ones. This year there was a song Rose, Up She Rises and there is a little Irish music in it so Julia did an Irish dance to it for a set of 8 beats and then her classmates joined in with their own version of Irish dancing for the next 8 beats. It was adorable! And the children had so much fun with it! For as shy as Julia is she sure loves a stage. And she loves to Irish dance so the match up of dancing on the stage was a great fit for her. <br />
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We also attended a holiday party with the family outreach program that we had swim lessons with in the Fall. It was our first holiday party there and we are so glad we attended. Another local family we met through this blog was there and it was nice to catch up with them. We also met some new families and enjoyed the crafts, music, cheer and a super special visit from Santa! My girls love Santa and we hadn't visited him yet this year so it was nice to see him and we were shocked to receive a gift from Santa. Emma wasn't so interested in helping to open the gift because she couldn't take her eyes off of Santa. She sat there the entire time he was giving out presents to the children and started and smiled and giggled and I can safely say that her love affair with the jolly old man is still going strong this year. Julia was more than ready to tear into the gift and was overjoyed to see it was an Elf on the Shelf - which Julia has wanted for a while. Her name is Makenzie and she seems to get into mischief rather than just sitting on a shelf and that is the source for a lot of amusement in our house each morning. <br />
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There were a lot of crafts, too. Julia loves crafting and had so much fun going to the various stations and creating masterpieces. We moved Emma from station to station and tried to get her to participate but she was more interested in just looking at everything going on around her instead of looking at us and the craft we were trying to help her complete. So, basically, both girls behaved true to form :-)<br />
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<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-70768821946648107012013-12-14T20:33:00.000-05:002013-12-14T20:33:12.373-05:00ShoppingI have two girls. One hates to shop while the other loves to shop. She considers it a great opportunity to people watch and soak up all the attention people throw her way. Can you guess which one is my shopper? <br />
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Hoping we can get a new ride in 2014 so we can transport her power wheelchair around and she can learn to navigate her way around in public. Until then, her adventures will stay with the manual wheeled variety :-)<br />
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<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-83121244782184269072013-12-10T22:38:00.000-05:002013-12-10T22:38:32.180-05:00Snow day and Eco2 internet accessToday was a snow day. Horray! Except that snow days are a lot of work for parents. Maybe a bit more work for parents of special little ones like Emma.<br />
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We did have a lot of fun today, though. The kids played outside for a while - lots longer than it took me to get them all bundled up in their snow gear. That's progress I tell you! Chris built Emma a seat out of the snow and she did well in it before she started sliding out and I started to worry she would be cold. Once that happened I decided to bring out the KidWalk and get Emma upright in the snow. She loved it and moved her little legs all around and we helped her move since her braces don't fit in her snow boots. When it was time to come in the children piled into the house for some hot cocoa, playing and eventually watched a Christmas movie while I baked a few Christmas cookies and Chris set about making dinner. It was the perfect way to spend the afternoon. <br />
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I was able to get some more adorable snow photos today. I even took a few family photos and one was selected for our Christmas card. I ordered the cards but it seems they might take until Dec. 24th to arrive so they could be {un}fashionably late this year. Hey, at least I pulled it together to order the cards and that's more than I thought might happen this year. <br />
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Since Emma was home with her talker we configured it to play some online games. She received money for her birthday so we purchased the computer portion of the talker (insurance requires it to ship without the computer activated if they purchase it so there is a fee if we want to be able to use it as a computer to connect to the internet) and I was anxious to figure out how to get it working. I'm part of an online Facebook group of parents whose children use Minspeak - the language of Emma's Eco2 talker - and they gave me lots of tips on how to get it to work and we eventually got it up and running. Emma was able to play a game on <a href="http://Helpkidzlearn.com/">Helpkidzlearn.com</a> before bed and she seemed to really like it. I also downloaded and installed the trial version of <a href="http://www.sensorysoftware.com/looktolearn.html">Look to Learn</a> for her to try based on another Mom's suggestion. I gave it a shot and it worked well and I'm excited to introduce it to Emma this week. We have the option to activate the WiFi part of the computer for another fee but we wanted to make sure we could get the computer part to work before we spent that money so for now we are using it wired. I forgot how unportable and annoying it is to not be able to move around with an electronic device! I think we might consider WiFi during the holiday and use the remainder of her birthday money to active it if Emma enjoys playing with the internet. I expect she might like the games and watching some YouTube videos and interacting with those using her eyegaze should help her get more accurate with eyegaze access for her communication. I expect Emma will make a lot of progress with her device for communication in 2014 but it will take a lot of work from her and us to get there. Please pray for her communication if you are so inclined. Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-3168004528046683682013-12-09T22:07:00.002-05:002013-12-09T22:07:09.567-05:00Hodgepodge and SNOW!Emma is making real progress in her Powerchair and I hope to get a video up soon. The problem is she won't move when she sees me start to take a video, so that's making it hard for me to post something. Hopefully the weather will be nice out this weekend and she can practice driving a bit and I can try and be a bit stealth in taking the video. <br />
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I'm still behind on thank-yous. It's looking like Christmas cards could be a no-go this year. That would be a first for me. There is still time, so I might get them out. We'll see if I get injected with a bit of umph!<br />
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We've had a bit of snow around here. The girls loved it yesterday and even ventured out in it - for about 15 minutes. It takes forever to put on all the snow gear but each year they tend to stay out a bit longer than the previous year. When I got all the gear together we found out Julia outgrew her snow boots and so did Emma. They are both about 2 or 3 sizes too small....it's been a while since we've had a good bit of snow around here! Good news is Emma fit into Julia's old boots and I was able to pick Julia up a new pair today. So we are now all ready for the snow that is supposed to arrive tomorrow....but since we're ready I'm betting a warm front comes on in and brings bathing suit weather :-)<br />
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Here are a few photos I snapped in the snow yesterday. It was a great day for us to play in the snow, drink homemade hot chocolate with whipped cream, listen to Christmas tunes and decorate our Christmas tree. It was one of those days that just felt right and festive.<br />
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<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-16654955504884480792013-11-23T20:28:00.000-05:002013-11-23T20:28:09.877-05:00Halloween and some new gear<div class="separator" style="clear: both; text-align: center;">
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I'm behind on just about everything lately (including sending out thank you notes for Emma's birthday so if you're wondering where they are know I'm working...or at least thinking of working on them), so it's no surprise that I'm behind in posting Halloween photos. <br />
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This year Julia decided she wanted to be an Angel and Emma was agreeable to wear the bunny rabbit costume Julia wore when she was in Kindergarten. They looked so cute together - my Angel and Bunny. I love how they are still into innocent costumes and I'm hoping they stay that way for another year or two. </div>
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Julia brought her Trick or Treat for Unicef box again this year. People must have remembered from last year because many people had some change ready to share. She did much better this year than last year and was so proud that she could help other children by collecting spare change. <br />
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We used Emma's iPad to help her navigate Trick or Treating again. I set up the Yes/No Answers app with two options for Emma: Trick or Treat and Thank You. She loved hitting the buttons and our neighbors all seemed thrilled to have her use it. Julia helped Emma a lot by asking for her candy at the houses where steps were a barrier. This year Emma kept good tabs on her Trick or Treat bag and was happy when she saw/heard the candy plop in it. <br />
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Speaking of candy - we have lots! The chocolate was the first to go since we all pick at it. Julia seems to love the lollipops, starburst and skittles the best and with the amount we have she currently has about a year supply so if you are in our neck of the woods and need a sugar fix come on over!<br />
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Halloween was also the day that we picked up Emma's brand new power wheelchair!!!!!!!! If you've been following along with our story you know we have been in appeals with our insurance company over this chair for about a year. It was a frustrating process but that's all behind us now because IT'S HERE!!!! and it was SOOO WORTH THE FIGHT!!!!! Emma has taken to it wonderfully and is now navigating about our driveway on her own. We do have a kill switch to keep her from danger but we are using it less and less as she is learning the ropes of safe driving. I can't believe how quickly she is learning. She is also going to school in it most days and learning how to navigate it inside school. She is still very much a beginner but I'm excited about the opportunity for independence this will give Emma. Already she has found power in her new mobility - using it to follow after her friends and to drive in the wrong direction on purpose when I tell her it's time to go inside the house. <br />
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Her chair is an Invacare TDX Spree and the color she chose is Bubble Gum. She controls it with her <a href="http://www.asl-inc.com/products/product_detail.php?prod=103">head array that is made by ASL</a>. I think her head array is the curved. The team wanted to get her a smaller one but I wanted this one because I found it kept her CIs on her head the best. Trust me, keeping the CI magnet on Emma's head is a full time job some days so when you find something that doesn't knock them off you stick with it! There are proximity switches in the head array and it's set up to go forward when she leans her head back on the switch, go right when she leans her head on the right switch and left when she leans on the left switch. There are areas in the headrest that don't have a switch, too, and Emma quickly figured out where she can rest her head when she wants to relax and not move. It's so amazing and humbling to see how quickly she is learning to navigate in her new chair.<br />
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The TDX Spree has the ability to tilt back in space which is how Emma prefers to sit so she can better control the head array. The seat can also be raised ~5" so she can reach sinks and other places that are at a higher height. We call her new chair "THE BEAST" because it truly is a beast sitting at about 400 lbs. It has 4 programs - one is slow for indoor use, and the other 3 are increasingly faster speeds. Emma LOVES the faster speeds so I usually put her on program 3 which is set at 40% of maximum speed. I think it equates to almost 3 mph which doesn't sound fast until you realize she isn't the best at controlling herself in it yet. We are thankful that it has a kill switch for us to remotely stop her from getting into a bad situation (can you believe insurance gave us a lot of hassle over adding this???? I mean, she was 5 years old when we ordered it for crying out loud!!!). <br />
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Emma's favorite thing to do in the chair right now is to drive over to people to give them a "High 5". She really is a very social girl! I can't believe she has only had this chair for about 3 weeks considering how good she is with it now. We have to work on her stamina to drive long distances and to stop being such a busybody and resting every-single-time she sees something (which is pretty much everything!) that interests her otherwise it will take us a week to walk around the block!!! But, I believe that everything will come together in time. <br />
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I am so very, very thankful that Emma has her new wheels. I'm also very thankful that she has already left her mark on it through scrapes, which means to me that she is starting to spread her wings because she is READY! </div>
Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com2tag:blogger.com,1999:blog-1562567569547870546.post-73983162222814445552013-11-18T09:13:00.000-05:002013-11-18T09:13:00.274-05:00Emma turned 6!Every year I make a birthday video for the girls using photos taken over the year. It's my solution to no scrapbooking time and the girls LOVE, LOVE, LOVE their videos. They watch them over and over and over during the year. I'm so glad I started this tradition because it always reminds me of how much life we pack into a year.<br />
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Today I'm ready to share Emma's 6th Birthday video. Enjoy!<br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/hPJc4QhaRzc" width="560"></iframe>Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-24473269672209147382013-11-13T08:33:00.000-05:002013-11-13T08:33:07.282-05:00Proof my kids were hereJulia was here<br />
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Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1tag:blogger.com,1999:blog-1562567569547870546.post-28748968269177685402013-11-11T14:25:00.000-05:002013-11-11T14:25:00.411-05:00Eulogy for my DadFor Dad's celebration of life I had the honor of giving his eulogy. It's the first eulogy I've ever given and I have to say it was a daunting task (and I'm not very easily daunted). I would gladly stand up in front of hundreds of people and read it, but first I had to write it and the task of trying to put into words how much Dad meant to our family was quite overwhelming. <br />
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I managed to put something to paper and practiced it a few times until I was pretty comfortable that I would be able to maintain my composure enough to get through it at Church. However, that was before the actual day. On the day of his service we had a viewing and immediately following the viewing was the mass. The eulogy was given after we said goodbye to Dad and closed the casket but before the mass started. What was I thinking? Such a profoundly sad moment in my life and then right on the heels of it - literally less than a minute later! - I was tasked to deliver the eulogy before I even had a moment to gather my composure. Let me just say that I think the timing required by the Church was much less than ideal and it should have come towards the end of the service.<br />
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I've been told that I gathered myself together quite well, but I don't know. The only thing I know is that I tried my best to hold it together and honor my Dad. <br />
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Here is what I had to say about my sweetheart of a Dad:<br />
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<span style="font-size: small;"><span style="font-family: Cambria;">I think most of you here know me but for those that don’t, I am fortunate enough to call Chris my Dad and I stand before you today not to mourn Dad’s passing, but rather to celebrate his life.<span> </span>Dad packed a lot of living into the 83 years he was here and he touched so many people’s lives for the better.<span> </span>The fact that so may of you are here today to say goodbye speaks volumes about his character.<span> </span><o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Many of you know him as the laid-back Irishman who always had a ready smile and a willingness to help a friend in need.<span> </span>Dad was a man who loved his family, his home country of Ireland, a home cooked meal, a good party and the 4:30pm Saturday night mass.<o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Dad was a hard worker.<span> </span>I have never met a person who worked harder than him and I’m pretty sure I never will.<span> </span>I don’t recall him ever calling out of work sick even though there were times he should have, but I do recall his reaction when I was a teenager and decided to call out of work sick to go to a party.<span> </span>Let’s just say I wound up going into work that day.<span> </span><o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Dad was a family man.<span> </span>He had a soft heart and Maura and I quickly realized that if we wanted anything to ask Dad instead of Mom.<span> </span>You see, Dad pretty much never said no to us.<span> </span>Especially when we asked while cuddled up in his lap and his lap was my favorite place to sit when I was little.<span> </span>Eventually, though, Dad started telling us to “go ask Mom” when we wanted something because he knew he couldn’t really say no to his girls.<span> </span>And then he became a PopPop and it seems that he became even more soft-hearted when dealing with his grandchildren.<span> </span>When I asked my daughter Julia if she thought I should say anything in particular about PopPop she asked me to tell everyone that he was the Best Pop Pop Ever and I think all his grandkids would agree with her.<o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Dad was a jack of all trades- I guess that’s to be expected since he was born and raised on a farm.<span> </span>He could and did fix pretty much anything.<span> </span>We didn’t always appreciate that about him for sometimes we were looking to get something new rather than mend the old, but once we bought a house my sister and I quickly realized what an asset it was to have a handyman Dad.<span> </span>He was always ready and willing to come over and lend a hand to fix what was broken whether it was a washing machine, an electric outlet or an overflowing hot water heater we knew we could count on Dad.<span> </span>Just recently he replaced a side view mirror on my car after someone tore it off.<span> </span>The dealership wanted a small fortune to replace it but Dad came right over, found a barely used one at a junkyard in town and fixed it up good as new.<o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Dad was a good storyteller.<span> </span>He loved to tell stories about when he was little and walked miles to school and church uphill both directions without any shoes.<span> </span>He loved to recount how he single handedly built Heathrow airport during the time he lived in England.<span> </span>He loved to tell how he would go to the Irish dances and that is where he met many of his friends here in the States.<span> </span>I remember laughing a lot at the dinner table growing up for it was often there where he shared these experiences.<span> </span>Dad was great at sharing his life stories with us and I wish now that I had gotten some of them down on video like I always meant to so my children could hear him tell the stories in his own voice.<span> </span><o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Dad showed his love freely.<span> </span>He kissed us good night and said I love you before ending any phone conversation.<span> </span>He taught us to pray, that it’s ok to make mistakes and to try and not take life too seriously.<span> </span>After retirement he took over some household duties such as scrubbing the floor and helping with the dishes to give Mom a break.<span> </span><o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Before you think he was perfect I should say that Dad also had some quirks.<span> </span>He loved to look at his reflection in the mirror, was immensely proud of the fact that most of his teeth were original issue and left all the packing and unpacking for overnight trips to Mom – something I don’t think is too bad considering Dad loved to match plaid with plaid.<span> </span><o:p></o:p></span></span></div>
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<span style="font-size: small;"><span style="font-family: Cambria;">Dad set the bar high for he is the standard upon which I measure men. <span> </span>Thank you, Dad, for loving us and for setting such a wonderful example of how to life a full and happy life.<span> </span>I love you.<span> </span></span></span></div>
Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com2tag:blogger.com,1999:blog-1562567569547870546.post-47912707982272335582013-11-10T21:03:00.001-05:002013-11-10T21:03:48.287-05:00TimeI just read my last blog post and am amazed at how little time has gone by since I last posted and yet so much has happened. <br />
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We celebrated Emma's birthday with an at-home party on October 12th and mostly everyone invited came. Emma loves to be surrounded by people so we planned for a large party this year and were happy that the weather cooperated. My Dad hadn't been out in about a month since he was recovering from a hospital stay and we were so happy that he was finally turning the corner and feeling good enough to come out. <br />
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I compiled the annual birthday video and once it was turned on all the children piled into the living room to watch and were thrilled to find that many of them were in at least one photo in the video. They then went on to watch every annual video I've made for each of the girls and several other home movies including one of Finnegan when she was a puppy. Who knew home videos would be such a draw? Everyone seemed to have a wonderful time and the birthday girl loved all the extra attention. Her favorite part of her birthday - or any birthday for that matter - is singing and the cake. I love watching the joy in her face when everyone sings the Happy Birthday song. It never gets old for me to see her so happy.<br />
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It's seems hard to believe that less than a week after Emma's birthday party my Dad fell and wound up in the hospital. We thought it would be a few days in to heal and then he would head home, but that was not to be. He was in the hospital for two weeks and during that time he contracted pneumonia and a staph infection and wound up in the ICU. He fought so, so hard to beat it and I've never been more in awe of my Dad's strength than in those two weeks. But in the end it was just too much and we said our final goodbye to Dad on November 2nd - <a href="http://www.catholic.org/saints/allsouls/">All Souls Day</a> - and the priest that came to bless him commented that if he had to go it was a blessed day to pick. <br />
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It's still hard to believe that we said goodbye to the first man I've ever loved. It's hard to believe he won't be sitting in his recliner and ready for a chat when I go home to visit. It's hard to believe Mom won't have her constant companion by her side for all the adventures they had. I'm sure it will sink in eventually but it hasn't yet.<br />
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Dad had a wonderful, full life. We had sunny day for his beautiful service and luncheon. He would have LOVED it! I think he was looking down from above and smiling.<br />
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Here is my favorite photo of me and Dad from my wedding. I can't help but smile every time I look at it:<br />
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Thank you to everyone who came to Dad's service and shared in the celebration of his life and to those who were not there but showed their love and support in other ways. It has certainly made this sad time a bit easier. Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com0tag:blogger.com,1999:blog-1562567569547870546.post-32310728363561566812013-10-15T09:23:00.000-04:002013-10-15T09:23:05.091-04:00Unexpected Blessings"Having a baby changes everything" says a baby commercial and there is so much truth in that statement. <br />
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When we first found out that Emma would have some differences the news pretty much rocked our world. It put us in a spot that was uncomfortable and very much unwelcome. Our future was unknown. The only thing we knew was the life we knew and expected would change forever. For the first year each specialist appointment brought us new information and more and more differences were discovered. It was a gut wrenching year and some days it felt so lonely. It was then that I learned about blogs and chat groups and I started to reach out to others. <br />
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I remember early on people would share their stories with us. People with children that have differences - from down syndrome to a mild hearing loss and everything in between. We didn't know anyone with a child with cerebral palsy until probably a few years into this journey. But the people we did know seemed to pass along a common message of hope and blessing. At the time I really thought they were crazy. How could all these differences be a blessing? How could having a child that would struggle for even the most minor physical achievement be a blessing? I didn't understand. I was angry. So very, very angry. At God. At our circumstance. With the news that each doctor appointment brought. With the intrusion from all the therapy appointments that seemed to dictate our daily schedule. With the stories from people about how X, Y, Z, Q, R, S kids had early intervention and it worked and they were caught up by school years. I knew that wouldn't be the case for my girl and hearing these stories <i>did not help at all</i>.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvu5iU1JRNtuHH8OQ1w3h2dqx2Q10PNCUysCdYsi43xVceY6l_vQNtXHRmSTVnQzyRRQOkeHjD12DyCSNj4KBp0ZBBUtruq4QI2eyLRCgjc1cZOLcmpwauDIpVLBccO3JJjZeEbU61bmU/s1600/stretch.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvu5iU1JRNtuHH8OQ1w3h2dqx2Q10PNCUysCdYsi43xVceY6l_vQNtXHRmSTVnQzyRRQOkeHjD12DyCSNj4KBp0ZBBUtruq4QI2eyLRCgjc1cZOLcmpwauDIpVLBccO3JJjZeEbU61bmU/s640/stretch.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little peanut getting stretched</td></tr>
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The early years were <i>hard</i>. And while each day I fell more and more in love with both my children, I did not see Emma's differences as a blessing. Nope not even one little bit. I was angry that my child that I loved more than life itself would have to struggle through her life. I was angry that Julia wouldn't have the typical sister bond with Emma. I was angry when we met families with children that had a terminal diagnosis because they shouldn't have to go through the loss of a child. <br />
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And after a long time with the anger I finally had to let it go. I had to move on. <i>Each day I was seeing this beautiful life unfold before me and there was no time or energy left for anger. </i><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu2HvkCXn0LOkyhNC23CBe2rLA9rSgpqFChTbkPo8krxP22xef-1r9hWNt-Imsco43ZMbrn8S2AeJjRRTN7qXek6PVc15dibaArvLsuvSJd5_jd2HhKbh8BkVBRYBgaJMBAds4bc1qIHw/s1600/IMG_2395+crop2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu2HvkCXn0LOkyhNC23CBe2rLA9rSgpqFChTbkPo8krxP22xef-1r9hWNt-Imsco43ZMbrn8S2AeJjRRTN7qXek6PVc15dibaArvLsuvSJd5_jd2HhKbh8BkVBRYBgaJMBAds4bc1qIHw/s640/IMG_2395+crop2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking around the playground</td></tr>
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And somehow, sometime in the last six years something changed in me. I started seeing Emma's differences as a blessing. I feel blessed to be so lucky to have both my children with all their unique characteristics. I started to wish everyone had an Emma in their life and I thought of all the people in the world that will never know how totally amazing it is to live our life. And I mean that - <u>our life is better than anything I could have dreamed</u>. It might be harder and more physically exhausting (and seriously, I could do without all the health insurance issues!) than I imagined but it is so full of LIFE. It is so fully of HAPPY. It is full of friends old and new. It is a much fuller life than I think we ever would have experienced had Emma not taken us on this journey. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSS5N8yaCIG7D5TxwQB5JHRWvq86FBGxTsiuEXCh3iOtXBpmREQEcwJ4e4dLWFT8-kgxP14lL6M6Z6oMYujYulzXnB8M-rpujVtGguVunLPvjClEgBA9FBuRIcN-1L0TZAKrcOAdoWCms/s1600/outside+in.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSS5N8yaCIG7D5TxwQB5JHRWvq86FBGxTsiuEXCh3iOtXBpmREQEcwJ4e4dLWFT8-kgxP14lL6M6Z6oMYujYulzXnB8M-rpujVtGguVunLPvjClEgBA9FBuRIcN-1L0TZAKrcOAdoWCms/s640/outside+in.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little girls playing peek-a-boo at the children's museum</td></tr>
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I see people looking at us everywhere we go. Yes, it might have something to do with the fact that we pimp out Emma's wheelchair for all occasions at her insistence - this girl loves attention - but it doesn't always. Sometimes it's people staring and pitying us and our life. To them I say, we are not to be pitied. We are having the time of our life - come and join us!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUHwiPf8c8S2DFNhr1LysuxWkV_XLtr2RvjWQJCGHcNuRq3tJh-EZilKETM4nCwhDuNrVsPcLkNDkxIX8mgyN4ecKzx3vPJTthF02zJ2gCea371XmkzXgidnd35Kj5sAGE3bZ9LSF95CQ/s1600/E+chair.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="476" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUHwiPf8c8S2DFNhr1LysuxWkV_XLtr2RvjWQJCGHcNuRq3tJh-EZilKETM4nCwhDuNrVsPcLkNDkxIX8mgyN4ecKzx3vPJTthF02zJ2gCea371XmkzXgidnd35Kj5sAGE3bZ9LSF95CQ/s640/E+chair.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's all about the boas, baby!</td></tr>
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<br />Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com2tag:blogger.com,1999:blog-1562567569547870546.post-11451884452305025302013-09-30T21:49:00.000-04:002013-09-30T21:49:00.358-04:00Back to school and other musingsThe end of summer flew by and we've been busy ever since. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh83hAuAiqyFZEOBXe33plfCEnDLiwAhFEp3TYmpuWQsK-q_LM8ARWJqBzanevQNtQ9213Bs18H77cx4JhN5vojwCB2pe_xq-5ufV51CmuVIsbvY65ZqXMsihCknX5utLu1USxTvearBVM/s1600/Magic+Gardens+Emma+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="369" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh83hAuAiqyFZEOBXe33plfCEnDLiwAhFEp3TYmpuWQsK-q_LM8ARWJqBzanevQNtQ9213Bs18H77cx4JhN5vojwCB2pe_xq-5ufV51CmuVIsbvY65ZqXMsihCknX5utLu1USxTvearBVM/s640/Magic+Gardens+Emma+2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These walls are so FUN to touch!!!!</td></tr>
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I was happy to get in a few final field trips with the girls - it was our very last Field Trip Friday until next summer. Our girls Field Trip Fridays started about 4 years ago and consisted of me and the girls exploring our community. We visited places big and small - anything from visiting museums and parks to walking around our neighborhood looking for different types of leaves. These days were the highlight of my week where I just had fun with the girls and let the housework and laundry pile up. Emma had off on Fridays in pre-school so our tradition continued while Julia was in school, but this year Emma will be in school full-time Monday-Friday so our Field Trip Friday will take a hiatus for the school year. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCL3oNITrH_nhyphenhyphenr2LFq-FJGeXz4ZUkW4T_gbmRYP6i-m_n-KiL8OPHCubx38gYenLdH-iDuthk3NuR-1oszbihdhvWr0aFs4QMgUaWQ4mqR_bUEXhmQDa2tihj5FEXf0pygT3KhHmxfnU/s1600/Magic+Garden+J.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCL3oNITrH_nhyphenhyphenr2LFq-FJGeXz4ZUkW4T_gbmRYP6i-m_n-KiL8OPHCubx38gYenLdH-iDuthk3NuR-1oszbihdhvWr0aFs4QMgUaWQ4mqR_bUEXhmQDa2tihj5FEXf0pygT3KhHmxfnU/s640/Magic+Garden+J.jpg" width="360" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Look at me!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxp5hND0kGtnmPQZzVXkJq8Cq41fSnlFiMcCUQb_y-frEqOlG7jcA0SAV95SQ305XPCqchSelHT1RteaCI7i6zzsnGFKyIROiDv_1Mey_L2XgmE8phW9SkzMhTDY0vaThoD3VMyhYeKcg/s1600/Magic+J+and+E+bench.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxp5hND0kGtnmPQZzVXkJq8Cq41fSnlFiMcCUQb_y-frEqOlG7jcA0SAV95SQ305XPCqchSelHT1RteaCI7i6zzsnGFKyIROiDv_1Mey_L2XgmE8phW9SkzMhTDY0vaThoD3VMyhYeKcg/s640/Magic+J+and+E+bench.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A brief rest</td></tr>
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Since it was our last Field Trip Friday we made it a super cool field trip and visited the <a href="http://www.phillymagicgardens.org/">Magic Gardens </a>where everything is covered in mosaics. It isn't fully wheelchair accessible but we were able to make it work for us since Emma is still so little. She loved touching the walls and the mosaics and the artist even stopped over to say hello to her and thank her for visiting. I had no idea he was the artist at the time, though, so I didn't get a photo but I'll try and get one next time if he is there. Afterwards we visited Chris at work and Julia took a peek at her 2nd grade classroom and got really excited for the start of the school year. It was a perfect Field Trip Friday!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibnxNIhu9dYIJh2XZXJzA-3ura-akIeJktjm3HwBYs92wT9gQzJOGzFrtctwfHLHR0xFnVeZB-eQOmp3JRaoWUlbt-PUQdRe4WQaCBOSqlCqBEKmvE0MnOtAKjWd6e21G9N2KmVN-EMqQ/s1600/Magic+Gardens+K+and+E.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="390" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibnxNIhu9dYIJh2XZXJzA-3ura-akIeJktjm3HwBYs92wT9gQzJOGzFrtctwfHLHR0xFnVeZB-eQOmp3JRaoWUlbt-PUQdRe4WQaCBOSqlCqBEKmvE0MnOtAKjWd6e21G9N2KmVN-EMqQ/s640/Magic+Gardens+K+and+E.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Julia is such a good photographer</td></tr>
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We finalized Emma's initial IEP and placement. Our district has half-day Kindergarten and we decided to send her for a full day instead of only the 1/2 day that she would normally attend. She will be in a Multiple Disabilities classroom (MDS) - I want to go on record that I HATE THAT NAME!!!! - for the morning and will receive all her therapies during that time and will attend the mainstream afternoon Kindergarten class with her one-on-one aide. She gets many therapies - PT, OT, Speech, Hearing, and Vision and fitting all them in during the regular 2.5 hour Kinder class would be too much interruption in my opinion. Emma doesn't like to get pulled out or work with therapists when her friends are around! So we decided to give this set-up a try for her first year at elementary school and see how it goes. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY3eTEsgsndUm24ErnW5t97t8O72pH8sRiwjXiEjfTsIAa6N9P7uMAc0gq6lozxgvFJMgxOhJ_e1CGdQOqAuTpJlL1ujLbBcCsGQWjTIEcdtUK-_KmSJ6kW9jJYcpIoFSYfIyiMyNZQ9M/s1600/Kinder+Emma.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="454" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY3eTEsgsndUm24ErnW5t97t8O72pH8sRiwjXiEjfTsIAa6N9P7uMAc0gq6lozxgvFJMgxOhJ_e1CGdQOqAuTpJlL1ujLbBcCsGQWjTIEcdtUK-_KmSJ6kW9jJYcpIoFSYfIyiMyNZQ9M/s640/Kinder+Emma.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">HAPPY HAPPY HAPPY Kindergartner</td></tr>
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The feedback so far is that she is doing really well and LOVES the mainstream Kindergarten class! She appears to be keeping up with her classmates and is fitting in just fine. The pace of the class seems to hold her attention better and she is less distracted than in the MDS classroom. Wow! That is a pleasant surprise! I went in to talk to the class for 10 min. one day about all things Emma and to answer any questions they had and I was told "I think Emma is so cool!" and "Emma is my best friend!" sprinkled among the many questions they had so I think she is fitting in just fine with the children! And, the other day I picked her up from school (she typically takes the bus to/from school) and when her class walked by for dismissal I heard so many of them say "Hi, Mrs. White." It really caught me off guard because I still forget that I'm Mrs. White {most of the girl's friends call me Ms. Kristina} and I'm not used to Emma's classmates actually talking. It was such an eye-opening and wonderful experience for me. So many things about Emma in the mainstream classroom have shown me the positive impact inclusion in our schools makes to our community. The last few weeks have made it crystal clear to me that we made the right choice for Emma's kindergarten year and all the work we are putting into the mainstream setting is completely worth it!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoXo17HAA6iB1NbqdDMnNMZfN9rdbTc0HJwwsZw_dOdiRrl3D_FmG64A3uR6o8UobATqR8nScPsFO5BVy70QMx80UpAJGKe-X3cY1BRk5Om3wlkcqoJn9n30iVAhyphenhyphenQKo8LpsnUNgejD4c/s1600/Kinder+Emma+bus.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoXo17HAA6iB1NbqdDMnNMZfN9rdbTc0HJwwsZw_dOdiRrl3D_FmG64A3uR6o8UobATqR8nScPsFO5BVy70QMx80UpAJGKe-X3cY1BRk5Om3wlkcqoJn9n30iVAhyphenhyphenQKo8LpsnUNgejD4c/s640/Kinder+Emma+bus.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You're new. Let me check you out. Ok, we're friends. Did you know the bus ride is my favorite part of the day??!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcqiXVHbvDpqEKPNHuA6FtXMc1w7ITgseOYy9iIAMcMqsaeQ9kHcPAFL6ssW3RNZiYXPUPUMPQvQM8CYRGY8cBLFxc3bnPycxLUsvBTQHca84SOjeZkyNmOIxuzwBKyvUlL0Nu3imcSvE/s1600/Kinder+EMma+bus+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcqiXVHbvDpqEKPNHuA6FtXMc1w7ITgseOYy9iIAMcMqsaeQ9kHcPAFL6ssW3RNZiYXPUPUMPQvQM8CYRGY8cBLFxc3bnPycxLUsvBTQHca84SOjeZkyNmOIxuzwBKyvUlL0Nu3imcSvE/s640/Kinder+EMma+bus+2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm ready to go. Don't worry about me, Mommy. I'm not a bit afraid and don't need to give you a second glance :-)</td></tr>
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Julia started back to school and is now a 2nd grader. How these girls are growing so quickly is beyond me! I love to watch her grow and mature and I love hanging out with her. She is just so amazing! I love the way she is connecting her world together and the conversations we have at bedtime. The time when the girls arrive home from school is my favorite part of the day with bedtime cuddles and chats with Julia a close second.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEM2TMVz6rb0_h2dzni38OaRdLMHiumkLjVNgkVgBFf8Ex0VSReuENqjZVJ3N67uH66ffapvIm_mnRlSGNNan1PiVXveYaUaBthldkX806Eokq3Ho0cWbCXkBIfhIzM3lWiePlSLyvoVI/s1600/2nd.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="450" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEM2TMVz6rb0_h2dzni38OaRdLMHiumkLjVNgkVgBFf8Ex0VSReuENqjZVJ3N67uH66ffapvIm_mnRlSGNNan1PiVXveYaUaBthldkX806Eokq3Ho0cWbCXkBIfhIzM3lWiePlSLyvoVI/s640/2nd.jpg" width="640" /></a></div>
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A friend I met through this blog - LOVE how this blog has introduced us to so many wonderful families! - told us about some local swim classes for children and siblings. It's held in a heated pool at a semi-local facility/house for adults with cerebral palsy and it's something our children can do together and they really love it when they can take classes together. This summer Emma made huge gains in swimming with a float ring (the $1 floats you can get at the drug store) around her body and she loves to swim "laps" in the pool. So we figured it is a good time to start lessons again. Julia is a strong swimmer and has been for a while but she loves swim lessons so we enrolled her to work on her technique a bit. Both girls love the lessons but I think they enjoy the last 5 min. in the hot tub more :-) Who wouldn't want to end a swim lesson with a soak in the hot tub? I just might sign myself up for the next session...just kidding.<br />
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Here is a photo I just have to include. I took it on Back to School night. Emma's artwork is circled in yellow here. I just LOVED seeing her art alongside her classmate's work. Such a proud moment for me!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLXz_SxzI3vC-CBjwS0QRliTDm-qus2FHBBjkxhRYALjmFSaYg2MIISq7n_gGmgQk0eImV5j_CZDrDmqaWLJ2rsG9rwAwxINTSZ713KWh9F97aDvc5ocBoHPjkrE6CNW88NlqESpOcVUA/s1600/E+artwork+back+to+school.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="478" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLXz_SxzI3vC-CBjwS0QRliTDm-qus2FHBBjkxhRYALjmFSaYg2MIISq7n_gGmgQk0eImV5j_CZDrDmqaWLJ2rsG9rwAwxINTSZ713KWh9F97aDvc5ocBoHPjkrE6CNW88NlqESpOcVUA/s640/E+artwork+back+to+school.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Emma's artwork hanging outside her classroom. She said "I hope that I learn to read" when asked what she wanted to learn in kindergarten. </td></tr>
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Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com2tag:blogger.com,1999:blog-1562567569547870546.post-6124486848426993722013-08-18T21:20:00.001-04:002013-08-18T21:20:21.720-04:00Endless summer funIt's unheard of that we would get a 3 week stretch of temperatures in the the 80s in August but it is happening! So, while we have it we're taking full advantage by hitting a lot of fun outdoor events. It feels strange to be able to do so many outdoor activities in August. Emma doesn't tolerate the heat too well so we usually wind up finding indoor fun options in July and August. <br />
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We continued our field trip fun week with a tour of the Herr's potato chip factory. This place is actually farther away from my house than I expected. And we hit more construction delays and traffic than I expected. So I wasn't surprised when we showed up at 10:10 for our 9:50 appointment and didn't see any of our friends there. <br />
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When we went to the registration desk after much discussion and flipping through papers I found out that my girlfriend had, indeed, changed the tour from Tues. to Wed. due to the crazy rain we had but I somehow missed the message that our tour time was changed as well. I thought we were too late to enjoy the tour when, in fact, we were about 1.5 hours too early! What to do, what to do? I haven't really ever had this problem before as we tend to run on the late side of things. The factory is in the middle of what appears to me to be nowhere although I'm sure the people that live there would be able to set me straight. I was banking on that when I asked the girl behind the counter if there is anything to do while we wait. The one girl was clearly too young so she just laughed at me - I immediately disliked her. The other girl - God bless her - suggested we check out a park down the road and off we went with a stash of potato chips bought at the factory store. We found the park easily and were really excited to see that it was actually a HUGE, fantastic park and a great place to visit in and of itself let alone as a time-killer before an appointment. The girls played and snacked and I snapped a few photos before we headed back for the tour that included a short video, a walk through the pretzel and potato chip operation, and snacks. We even were able to try hot potato chips right off the production line, which was big hit with all the children.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQs9aUhanknP1J9YWnJ8plSdjuzZH1iikukagE4JfNpPO5dcGiFU_DemJW_plyinZKA2-dZdkB_GQ7jFkQl39Nr8Pt5zmPfHqFvtgGe6ijL15fHU6kU03wRyUp5Rvtfw1XYzoMa-iZdXI/s1600/IMG_2103.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQs9aUhanknP1J9YWnJ8plSdjuzZH1iikukagE4JfNpPO5dcGiFU_DemJW_plyinZKA2-dZdkB_GQ7jFkQl39Nr8Pt5zmPfHqFvtgGe6ijL15fHU6kU03wRyUp5Rvtfw1XYzoMa-iZdXI/s640/IMG_2103.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The park would have been better with our jogging stroller instead of the wheelchair.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I sure would have loved exploring the trails a bit more, but the wheels weren't suitable for it. Emma didn't mind!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioB7NpsD8UU-v9b68I1XYJ7m5l2X5djcUKtOjWNzcd8VHFNWDt50wqIXlspoOy1oMbj1XtHwF-DKxl35oP9ypWAqBl9iF5p8-YXWRsTEr61IL5uby47y_BG37zrl3B-WhmiUzlDsx6aOY/s1600/IMG_2157.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioB7NpsD8UU-v9b68I1XYJ7m5l2X5djcUKtOjWNzcd8VHFNWDt50wqIXlspoOy1oMbj1XtHwF-DKxl35oP9ypWAqBl9iF5p8-YXWRsTEr61IL5uby47y_BG37zrl3B-WhmiUzlDsx6aOY/s640/IMG_2157.jpg" width="426" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A few of the crew that toured. The rest headed to the great park before heading home so I missed snapping a complete group photo.</td></tr>
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We ended our field trip fun week with a trip to a local garden estate for some Friday fun. We became members in June and are hoping that the wide paths will be a great place for Emma to practice driving her power wheelchair. We are ever hopeful even though we are still in appeals on the denial. Still, it's a great place to explore and since lots of our friends have memberships it's a good meet-up destination. <br />
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We have 2 more full weeks of summer vacation. I wonder what we'll do next??? We have a few more fun adventures planned so stay tuned...Kristinahttp://www.blogger.com/profile/13259709507156454270noreply@blogger.com1