tag:blogger.com,1999:blog-53992147317455519722024-03-13T13:50:47.074-05:00Conklin CreaturesConklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.comBlogger141125tag:blogger.com,1999:blog-5399214731745551972.post-42958013668143429402013-08-19T21:20:00.001-05:002013-08-19T21:20:27.281-05:00A little help? I've mentioned on here we are VERY blessed to have a <a href="http://www.ritecarene.org/" target="_blank">free clinic</a> to be able to take Levi to for speech therapy over the past year. I'm too lazy to count it up ;), but we've been seeing Paul and Korey for probably 40 weeks and there are some weeks we've gone for as many as four times in a week. These sessions are valued at $100 each, so even if we just averaged 1.5 visits per week, we've saved an estimated $6000 so far in speech therapy for Levi. Due to the fact that very few insurances will cover the intensive speech therapy needed for kids with Apraxia, there are many, many other families across the country getting second jobs, downsizing their homes, and making huge financial cuts in order to afford their child's much needed speech therapy. Our insurance only will cover 20 visits per year, so without the service provided by Rite Care, we would be another one of those families trying hard to find a way make the payments.<br />
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<tr><td class="tr-caption" style="text-align: center;">Levi working with Paul at Rite Care.</td></tr>
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Knowing that we've been given so much, we have been working to find ways to give back to the clinic. As a part of that goal, we'd like to invite you to support Levi and Rite Care as they help Levi and many other kids like him learn to speak. There are two opportunities we would be humbled for you to consider giving to: 1) To support Team Levi in the Walk Rite for Rite Care on September 22nd. Whether you can actually come and walk with us, or just send a donation on behalf of Levi, <a href="http://walkrite.kintera.org/faf/search/searchTeamPart.asp?ievent=1072118&lis=1&kntae1072118=11446EF6F0BB4909BBDBA91E9CA44C6D&supId=0&team=5546290&cj=Y" target="_blank">here is the link</a> for all of the information (and a VERY adorable picture). 2) Rite Care, being a non-profit, has a rather slim selection of toys to use in therapy. Because toys are so motivating and such a key part of each therapy session, they have sent me a list of toys that would be helpful (per my request). If you would like to help purchase a toy from <a href="http://www.amazon.com/gp/registry/wishlist/17V4I1H2I77J0" target="_blank">this list</a> for Rite Care OR already own the toy and would be willing to donate it (used is fine!), then please let me know. If you would like to purchase a toy to donate, please just have it sent to our house (let me know if you need our address) and I will drop it off to the clinic for you. If you are donating a used toy, let me know and I can arrange a way to get it from you and deliver it to them.<br />
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Thank you so much for considering these opportunities! Whether or not you are able to give, we appreciate all of the support we've received from so many over the last year as we've been on this journey with him.Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-9748101110708224802013-08-19T20:44:00.002-05:002013-08-19T20:44:41.339-05:00Levi turned three!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidKQ1JAay3kjkMns9rmYlg79PonwrTcjiJLVqhQlCtKQfKBoHKThT8pBjz0xdmPn63KJsPQr5J_8FHCTkLvGtR7DRBot-SNB-v3b43h3YYJ69kdaaFUkS54_ogxddkHC1a87KHAOGGLwKN/s1600/IMG_0672.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidKQ1JAay3kjkMns9rmYlg79PonwrTcjiJLVqhQlCtKQfKBoHKThT8pBjz0xdmPn63KJsPQr5J_8FHCTkLvGtR7DRBot-SNB-v3b43h3YYJ69kdaaFUkS54_ogxddkHC1a87KHAOGGLwKN/s320/IMG_0672.JPG" width="320" /></a> I have much to blog about, but first things first, I wanted a separate post to celebrate our little big guy. On July 14th Levi turned three! It was super fun celebrating him and his precious life these last three years. They've gone by fast and slow at the same time, but either way we couldn't imagine life without his sweet existence.<br />
I had mixed feelings about him growing older for a few different reasons (he's my BABY!), but my heart especially had a hard time since I feel like the gap has widened now between him and his peers. At three, people expect you to speak and to understand you and since he cannot do that, it's hard. We have to work extra hard to keep him from shutting down when others talk to him, but he is up for the challenge.<br />
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Showing off daddy's medal from the state games.</div>
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One big party to celebrate all the spring/summer birthday cousins. There are so many of us, we had to party in the garage. :)</div>
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He loves dinosaurs!</div>
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The zoo never gets old.</div>
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"Fishing" at the farmer's market.</div>
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We love you sweetheart!! Praising God for your precious life. :)</div>
Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-25988188740248498582013-06-12T19:54:00.001-05:002013-06-12T19:54:14.526-05:00Summer Is Here!<div class="separator" style="clear: both; text-align: left;">
Summer arrived exactly two weeks ago for us and we are already making a large amount of memories! Here are some of the pictures from the last month to prove it.</div>
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My garage sale helper. Never before has there been a cuter bite taken from a bagel.</div>
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And then this also happened during the garage sale... Still cute, but messy.</div>
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Jonah brought home his school journal and this was in it. "My favorite person in the world is God. -He's the best. -He's perfect -He's amazing -He's on the good side" So proud of this boy and a successful first grade year. We so love our sweetheart.</div>
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A bird, not an eagle like it would seem, too up residence in our grill for a few days. The grill is now in the garage.</div>
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Two boys in a barbie jeep. Not too cool for it.</div>
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Princess Abby had her adenoids removed and was a champ! Hoping this keeps her from getting so many of those yucky sinus infections.</div>
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We got a face-painting kit and had to try it out. It's a hit.</div>
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We went to the Lauritzen Gardens (you may remember such a place from our wedding reception exactly nine years ago today!) and saw the lego displays intermingled with the vegetation. It was beautiful!</div>
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Sprinklers!!</div>
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Little Miss graduated preschool and will be off to Kindergarten next year. And she is R-E-A-D-Y. Just disappointed it's so far away from now. :)</div>
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This picture melts my heart.</div>
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Mother's Day. Up here, Levi!</div>
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Also Mother's Day. They just wanted to serve me all day. So sweet. I'll take it!</div>
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The tulips have come and gone, but they were the sign that Spring was finally here!</div>
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And it's hard to believe, but Brian and I have been married nine years today. Not too long until the big double digits! I love him more everyday and can't imagine anyone more perfect to share this crazy journey with. Love you, Brian!</div>
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Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-91031678947247140132013-05-02T20:27:00.001-05:002013-05-02T20:27:03.945-05:00A Lesson in Patience<div class="separator" style="clear: both; text-align: center;">
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If I was forced to name my biggest weakness, I'm almost certain that after painfully listing out endless issues of mine... and then listing out a few more, I would eventually land on patience. It is not my strong suit. We have DVR and fast forwarding through the commercials takes too long for me. I don't like things that slow me down on my journey (even if that journey in the moment means watching Shark Tank) and that is definitely not an attribute, or lack there of, that I am pleased with. Not only am I not good at it, I'm so not good at it, I'm too impatient to even make baby steps in that direction.<br />
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Insert God and his irony. As Levi is now a little over two months away from turning three, it is becoming clearer and clearer that we have a very long road ahead of us, and little to show for the last nine months of speech therapy, six of which have included intense speech therapy, four times a week. Today, Levi has maybe about ten words that he uses spontaneously, and when I say ten words, I mean he may say one of those words- such as "moooooo" (for move) as he pushes you to move- maybe once in a week. And not only that, but it a partial word, or approximation as they call it in the speech world- not even the correct word. He can get to more sounds at this point than he could six months ago, such as /s/ and /n/. He can also do some new combos, such as "puppy" "baby" "bubble" "mommy", but all of these things can only be done with prompting and usually a very concentrated effort by him.<br />
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Things are moving at slower than a snails pace. No way did I think we would have so little progress in such a long period of time. And yet, I am so proud of Levi and how hard he works. He spends two hours in the car each week driving to and from speech therapy, and three and a half hours each week working. He tries so hard to move his little lips and tongue in the way he needs to, and even spends a decent amount of the time failing, yet almost never complaining. Slowly over the last year, he has learned that working on speech is just a part of the way of life for him. I am so proud of him for every little step he has and hasn't made.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqR_XYWAIc13T3AvgbZlb3jBepQrIn4Hq4IfPJPanK-wg98ACokhE-zkOkGZRwxzxIDaNjKoiXmeZWvvQsiC96GiIlFeWhRf2RmqfEHjseAr4Zzp0D8DykgdGRYR_G2hXx43weZ1m8vM4/s1600/57F58042-0BC3-48D2-BDF9-28B1DC8C7012.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTqR_XYWAIc13T3AvgbZlb3jBepQrIn4Hq4IfPJPanK-wg98ACokhE-zkOkGZRwxzxIDaNjKoiXmeZWvvQsiC96GiIlFeWhRf2RmqfEHjseAr4Zzp0D8DykgdGRYR_G2hXx43weZ1m8vM4/s320/57F58042-0BC3-48D2-BDF9-28B1DC8C7012.JPG" width="320" /></a>So, I've decided to quit fighting the rush rush rush of wanting to speed through "fixing" Apraxia for Levi, and allow God to refine me in the area of waiting. And waiting patiently. With hope and with peace. Levi is such a bursting ball of joy and giggles and fun, he is already making this slow journey enjoyable with his insane cuteness and bubbly attitude. While I will always long for the day when I will finally hear him call Brian "daddy" or be able to understand the story he's telling me, I will wait with joy. Thankful for the present time that we are in, even if it isn't as I would have planned.<br />
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<b>UPDATES:</b> Levi's device was covered 100% by insurance (Praise God!!) and should be arriving any day now. Yippee! Also, Levi had an appointment with the Developmental Pediatrician this week and while we didn't really learn anything new, I Levi does officially now have the diagnosis of Apraxia. The Dr. said the diagnosis really is good and bad. Good in his case that there are no cognitive issues, Autism, or other physical disabilities, but bad in that there is a long, intensive road ahead in regards to speech. He also was retested within the school speech program, and is on par for his age for receptive language (another huge praise as being unable to speak can often really hurt receptive language also), but at a 15-18 month level in regards to speech. Nothing surprising there.<br />
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<br />Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com1tag:blogger.com,1999:blog-5399214731745551972.post-87457975548661136482013-03-13T17:42:00.001-05:002013-03-13T17:42:30.030-05:00Test RunLevi's trial device arrived! We have enjoyed working with it the past few days and while it will take some time to fully get used to, he is picking it up very quickly. In this video, we had really been doing the puzzle for maybe 10 minutes and he had never seen the puzzle menu before on his device and was already using it. Smart cookie! Notice too when I ask him his name and was at the home menu, he knew right where to go. We have made very slow progress with sounds, but he can say "yeah" when he is looking at me to get a cue of how to form his mouth. He also was mumbling his no, which sounds like "oh" for him, but when I asked him to try harder it sounded much clearer. It's such hard work for him to make the sounds he wants. I don't blame him for getting lazy with it. He's allowed to be two, Apraxia or not. (Please try and ignore my voice.... ugh)<br />
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Here's a look at the device. It's about the size of an ipad mini. There is a bluetooth speaker mounted on the back.</div>
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Here is the first menu you see, or the "home" menu. </div>
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When you tap chat, it takes you to these common conversational phrases. He tapped "name" to say his name.</div>
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If he taps "I want" it takes him here, where he can choose what he wants next.</div>
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This is the "to play" menu</div>
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This is the "cars" menu. I added the "Mater" button, since that is his favorite toy car that we have. He can tap two buttons to start pairing words together, such as "car crash" and "Mater jump". He should be pairing words together and forming sentences at his age, but since he can't speak, he is very behind in this. A device can aid him in building this language skill even when his mouth can't keep up.</div>
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This is the "puzzle" menu he was using in the video.</div>
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This is the "things" menu, which we will add into use over time. It helps provide words that he may want randomly, if he's hurt, wants his socks, or to wash his hands.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCVH2jSJyTLkTrHYttmfRX85SiJSBsD9HPZUAcAfPyfTzxaUlcL0qy3Te0pv50ytMSdJ9hWXirN8ecMdfLQRSNYS3A3rJG5prvumQv9xw6v9BxIEp7E53f0N2ijg4OoVd0PfGtjeCo-1Zc/s1600/A3097A9C-6EAC-4812-A1F9-4148B5BDCACD.JPG" imageanchor="1"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCVH2jSJyTLkTrHYttmfRX85SiJSBsD9HPZUAcAfPyfTzxaUlcL0qy3Te0pv50ytMSdJ9hWXirN8ecMdfLQRSNYS3A3rJG5prvumQv9xw6v9BxIEp7E53f0N2ijg4OoVd0PfGtjeCo-1Zc/s400/A3097A9C-6EAC-4812-A1F9-4148B5BDCACD.JPG" width="400" /></a></div>
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I'm excited to use this menu tomorrow so he can tell me what he wants to see at the zoo!! He's never been able to do that before. I'm curious to see what he decides.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh36UbGAp0ZWhuTDrY3_qmx8mYZ0jBOVDdd3ptJfo23bJkbSyzJwzt_UHCKbR0nfvJfUhW8bwvrJd8PpmtYbc17ND8ZZ92ti5Ecs65bnV7sIdgBIEW9O2XCWCArgsxASjsE0jl5ooiNhyzM/s1600/8EC13427-F5F9-42BD-85CF-8A3C59EF4D7A.JPG" imageanchor="1"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh36UbGAp0ZWhuTDrY3_qmx8mYZ0jBOVDdd3ptJfo23bJkbSyzJwzt_UHCKbR0nfvJfUhW8bwvrJd8PpmtYbc17ND8ZZ92ti5Ecs65bnV7sIdgBIEW9O2XCWCArgsxASjsE0jl5ooiNhyzM/s400/8EC13427-F5F9-42BD-85CF-8A3C59EF4D7A.JPG" width="400" /></a></div>
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So that's the basics of it. We have given the OK to go ahead and start the process of getting this ordered, but I'm not sure if they'll be able to do that until we return the device. Oh, and another great story about it: On Sunday, I was making cookies and Levi was whining for something when he walked into the kitchen. At first I thought it was chocolate chips, which is wasn't. Then I thought it was Mater, which he threw. I decided to give Levi the device to see if that would help, and he quickly tapped right through the menus saying "I want" "To eat" (then went into the snack sub menu) and chose "cookie". THAT is what we're hoping for more and more of!!</div>
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P.S. (Toby, plug your ears) Abby lost another tooth! The one just to the left of her middle one that she lost. She's got a top one that's barely wiggly now, but she's getting to work on it. She likes loosing these teeth.</div>
Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com1tag:blogger.com,1999:blog-5399214731745551972.post-39956790875838545932013-03-05T19:36:00.002-06:002013-03-05T19:36:13.436-06:00Durable Medical EquipmentI am happy to say that we have had a rebound from last week's discouragement! Saturday we had our first get together with other families with Apraxia in the area and it went really well. There were members of five families there and while it was a bit crazy with the kids climbing all over the giant tunnel gym, it was so helpful for the parents to chat and compare treatments and progress. One of the moms said it was like a counseling session. :) We plan on getting together again soon!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuUYimMtwrlomT-hDa5Z3dGc1GA_MQjNGit8M-Bx21HCJQs__aOKTjs0jvVT8R1BKQFlAtS8ZGpRNNgyqB2cWHlUZdGul2pbUbU3CPs-w-8Oe1DEINUzXyjMoTppVNRBYm2-h98u2q-Rii/s1600/8C339169-F573-4087-A8A2-E4DC56C4EF69.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuUYimMtwrlomT-hDa5Z3dGc1GA_MQjNGit8M-Bx21HCJQs__aOKTjs0jvVT8R1BKQFlAtS8ZGpRNNgyqB2cWHlUZdGul2pbUbU3CPs-w-8Oe1DEINUzXyjMoTppVNRBYm2-h98u2q-Rii/s320/8C339169-F573-4087-A8A2-E4DC56C4EF69.JPG" width="320" /></a>Yesterday was a very big day for us! Levi had his usual speech therapy appointment at Munroe Meyer and then right after it was his evaluation for an augmentative device. At first we sort of talked about what my observed concerns and needs were for him, and then we went into a room with toys and devices. The first thing they did was put a device on the table and ask him what he wanted to do. It literally took him no time to get things down. He tapped right on to the cars and they said "Oh, cars? OK! They are right here!" They went on doing a series of things like that, asking him questions and guiding him through the device to respond. Before we knew it, they were asking him "What do you want to do?" and he was tapping things like "car crash" and crashing the car into a block or "crash horse" and crashing the car into a toy horse. There was a monster on the hood of the truck and the specialist added a button for it since he was pointing to the monster so much. I sat across the table and it took everything I had not to start crying. He looked SO HAPPY. The specialist actually mentioned that when Levi tapped and 'said' "I want to play" he looked up with a face so happy and looking like 'I just said that!!'. It was so sweet. Best of all, he was mimicking whatever word he tapped and heard the device say. He actually said "bo" for blow, which is a sound that we had just literally spent a half hour trying to get out of him in speech therapy, but hadn't heard. Not only did he do amazing with the device and catch on with the communication assistance it provided very quickly, but it also was encouraging sounds and word approximations out of him beyond what I ever could of hoped. So, in a word, it went amazing! Levi tried out three different devices and did very well with all of them, but I settled on the one I felt was the best size, light weight, and made in Nebraska, which may save us some hassle. I hope to have pictures soon, but it essentially looks and works like and ipad mini with speakers mounted on the back and a handle on top.<br />
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The not as exciting news is that it will most likely be a bit of a battle to get insurance to come through on this. While they should approve it and cover it, they will most likely deny the prior authorization that they require and we will need to appeal, perhaps a few times. There also may be a battle to get the manufacturer considered "in network" for insurance. In theory they should be able to make it happen, but insurance companies can be.... interesting... to work with, and I'm not holding my breath. If it is not considered in network, we will need to cover 20% of the cost. Seeing they way Levi interacted with it, however, we would find a way to pay for it, whatever the cost. It is so exciting! Starting next week we should be able to get a two week trial of the device and then hopefully have our own with the next month or so, depending on how long things go with insurance. With insurance, the device is actually coded under "Durable Medical Equipment", the same categories as wheelchairs and other similar items. It is an odd feeling having a child need such a thing, however we still have so much hope that he will overcome this, perhaps faster than we could ever imagine, and I know that his need of it will be temporary. For the meantime, I'm so thankful that we have it as a tool to help him! I can't wait to see him communicate in a new way I've never seen!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUdNyNV6UqodHn86aD7-Gdyxl4t8hhGn6f4whWNURNFPYCPa8Yhcms7WoN5cLuoKGPK_WUNUmi6h1GGWWbf983x1zL-XOF1e6p3Bstcr92DGSDlkBfccmREAz6s0e5S81JkEZF7n8CfeYG/s1600/34FC6003-5AAE-4FE7-9FB3-98AEE06DD554.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/AVvXsEgUdNyNV6UqodHn86aD7-Gdyxl4t8hhGn6f4whWNURNFPYCPa8Yhcms7WoN5cLuoKGPK_WUNUmi6h1GGWWbf983x1zL-XOF1e6p3Bstcr92DGSDlkBfccmREAz6s0e5S81JkEZF7n8CfeYG/s320/34FC6003-5AAE-4FE7-9FB3-98AEE06DD554.JPG" width="320" /></a>In other news..... Abby lost her first tooth! It was very exciting and the tooth fairy came, even though the tooth accidentally went down the garbage disposal. Whoops! Abby claims she was a topic of discussion at preschool. Tooth loss envy. #fiveyearoldproblems Our little girl is growing up!Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com2tag:blogger.com,1999:blog-5399214731745551972.post-36490649246231690242013-02-28T13:29:00.001-06:002013-02-28T13:29:39.226-06:00Keeping it Real If you know me very well, hopefully you consider me to be someone who keeps things real. I don't mean that in a prideful way, but in more of a "here I am, take me or leave me" kind of way. An example, I now have a very lovely scar on the right side of my head/neck that is rather exposed when I wear my hair in a ponytail. I don't like it and I wish it was much less prominent than it is, but I don't have the time, energy or care to cover it and pretend like the surgery never happened. It did, I have a scar, and take it or leave it this is my neck now. (Scarfs do come in handy when I'm having moments of feeling self-conscious, however). So, on that note, things have been harder here with Levi lately, particularly for me, and I'd like to ask for some prayer if you happen to think of us. I posted a video a few weeks ago of him pointing out the window and telling me a story that I never did figure out. Well, this is pretty much a daily occurrence here lately. I can't tell you how hard it is to be a mom and have a child so desperately trying to communicate something to you and feel like you of all people should be able to understand what he's saying, but not be able to. He tells me stories, comes and asks for things, tells me jokes, but it all is done using one or two vowel sounds. He knows exactly what he's saying, but his mouth isn't able to form the words. It's heartbreaking, really. Particularly as his mom. So, if you think of it, pray for me and us in this area.<br />
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As things have gotten harder with him, I have gotten more concerned and am becoming more aggressive with how to help him. After some resistance that I don't feel it's probably helpful to go into detail about, I have finally found a path to have Levi evaluated for an augmentative communication device. The hospital that we take him to twice a week for therapy agreed that it would be very helpful for him to have. This does not mean that we are giving up with him speaking, but more accepting the reality that there is a long road ahead of us. There are a few key benefits of him having the device. 1) It will keep him communicating. I really am afraid of Levi withdrawing more and more out of frustration from not being understand. When no one understands you, soon enough we all would quit trying. Having him be able to communicate in a way that he is understood would be so amazing for him. It brings me to tears to think of all the things he has in there to say that I've never heard! I can't wait to get to know Levi in a whole new way!!! 2) He will be able to hear the sounds of the things he's saying. There are some sounds he knows that doesn't use, and I'm hoping and praying that by using a device to say "dada" he himself with remember, oh, I could say that! and use the sounds he has. Speaking is very hard for him, so I think he's gotten a bit lazy from using sounds that he can do just because of the challenge. Hopefully when he sees the power that these words will have for him, he will be more motivated to try harder. 3) The outside world will be able to understand him. People aren't really sure what to do with Levi. He talks to people all of the time, but they either end up looking to me, or get embarrassed and turn away, or tell him they're sorry, they just don't understand him. I'm hoping this will keep him interacting with the world and keep people interacting back with him! (On a side note, if you are one of these people in this situation, talk back to him. If he's pointing at a picture, name and discuss what he's looking at. If he's pointing out the window, discuss back what you see. If he seems like he's asking for help, ask him to show you what he wants. I know it's a bit awkward sometimes, but hopefully knowing how to respond will make it less awkward.) Praise God, we have found out that our insurance will cover a device for him 100% (they can cost up to $7000!) and this coming Monday he will be able to play with some of the options out there and hopefully we can get a feel for which direction to go. There are literally dozens of devices to choose from, so praying the right one for him becomes obvious! I will explain more about the device once we have one chosen.<br />
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A few other things I'm working towards doing for us is getting us as a family into a community where we are able to relate. About a month ago I started calling around to try and connect with people in the area who also had Apraxic kids. After a week of phone calls calling the national Apraxia association, local special education non-profits, school district case workers, and asking speech therapists, I came out with zero contacts in our area. The only person who knew of anyone in our area with anything close to Apraxia is his speech therapist at the hospital, but he knew of no group or community to become involved in. However, a few weeks ago I was able to track down a national Apraxia social group on facebook and through that, connect with a few parents in the area. It was amazing! We are actually going to get together this Saturday night with all of our kids and I am so excited to be able to interact with other families on a similar road, to compare notes and be able to see other kids with Apraxia in action. I am even more excited for Levi to be able to go up and "talk" to these other kids and not feel out of place. Perhaps he will even feel understood.<br />
Ok, so, thus endeth my blog counseling session. I feel like it's important to say, not only for me to be able to look back on, but also for the other people out there who maybe stumble upon this and are in a similar situation. Hopefully it's also helpful for those who just care and love our family and are looking for specific ways to pray. We appreciate your prayers and support! This road isn't the easiest, but Levi is so very worth it!Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com3tag:blogger.com,1999:blog-5399214731745551972.post-29293543773982241162013-02-16T13:16:00.002-06:002013-02-16T13:28:15.988-06:00We Went to Disney World!!<div class="separator" style="clear: both; text-align: center;">
<span style="text-align: left;">Last week, we went to Disney World! A few months ago Brian and I were talking about investing in making family memories. We have gone on a few trips with our extended families on both sides, but we had never as our own little family planned and gone on our own extended vacation (more than two nights). It always seems like a "waste" of money to go on vacation, but we had read an article by C.J. Mahaney (I think that's who it was) on investing in creating positive family memories and bonding time and the indefinite value that brings and it got us excited about the idea of doing it ourselves. So, after <a href="http://conklincreatures.blogspot.com/2012/11/connections.html" target="_blank">a stressful Thanksgiving</a>, it was definitely time to have a fun trip on the horizon. We decided to surprise our kids with a Christmas present trip to Disney World! I think we were just as excited as they were. We also invited along the grandparents and we were even more excited when both sets could come with us for part of the trip. After we had planned the vacation, my tumor and the surprise surgery came about and it seemed for a while that the trip would have to be cancelled, BUT GOD opened up a quick appointment and surgery date so ended up having enough recovery time to still be able to go. Praise God! With all of the flu going around and unpredictable weather, I was nervous that our careful planning would be spoiled, but that wasn't the case at all. We were all healthy, grandparents included, and the weather was absolutely amazing. All this to say, we had an amazing time and definitely felt it was a worthwhile investment in our family. The kids were on cloud nine the entire time and still talk about it like it was a dream and Brian and I now deem it as our favorite family trip. It was such a special time for our family and something we all will always remember. I see more "investments</span><span style="text-align: left;">" happening in the future...</span></div>
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The pictures are a bit out of order, but it is a pain to reorganize, so I'll just comment on them as they are. This is our first view of the castle on our first night. It really is it's own "world".</div>
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The first ride we went on was the safari in Animal Kingdom. Those are hippos in the background.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJym4qAe6ll_HcTpgqFVsd1M2h5lavbse7SJE7VZjFh4cb2iP7xYk6vxneIBsjhgW2GqNCYccUU-KdymTUQEt6NsMN6lA7N1Cy0jChGcqYurWGiprP2CcEmdgqrQMBHu8c02zt7_5LzH7v/s1600/4AD22FD0-C9A7-4111-B977-4C7D80F825BC.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJym4qAe6ll_HcTpgqFVsd1M2h5lavbse7SJE7VZjFh4cb2iP7xYk6vxneIBsjhgW2GqNCYccUU-KdymTUQEt6NsMN6lA7N1Cy0jChGcqYurWGiprP2CcEmdgqrQMBHu8c02zt7_5LzH7v/s640/4AD22FD0-C9A7-4111-B977-4C7D80F825BC.JPG" width="640" /></a></div>
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Abby insisted on going on Expedition Everest with me, which was crazy, because it is a bit of a scary ride. Her face in this picture says it all, although she claims that she liked it, but doesn't want to do it again. :)</div>
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We did A LOT of meeting characters, as the kids were very in to it. We met every princess except for Tiana and the kids autograph books are full! Here's Levi with Ariel. He even got a kiss!</div>
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Abby's turn with her favorite princess.</div>
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This was actually the second Sleeping Beauty (Princess Aurora) that Abby met.</div>
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The castle all lit up.</div>
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We had lunch in Epcot with five of the princesses, Belle being one.</div>
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Snow White, of course.</div>
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The princesses had all the kids do a princess parade where they walked and waived. Abby brought along Pascal.</div>
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The first Cinderella we met.</div>
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The first Sleeping Beauty we met. I don't think Abby noticed the difference. :)</div>
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Rapunzel! Abby really had hoped to be able to meet her and it was worth the wait.</div>
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This is from dinner the first night. Levi loved meeting all of the characters. It was so cute.</div>
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Kenai and Baloo from Jungle Book.</div>
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Chip and Dale</div>
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The first princess Abby met, Pocahontas. Jonah was confused why her skin wasn't darker. :) Maybe they should give Pocahontas a spray tan.</div>
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One of the Donalds they met.</div>
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Levi in line to meet Goofy and Pluto, the first characters he met.</div>
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Nice pants Goofy!</div>
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Can you see DiVine in this picture?</div>
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Mulan</div>
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They kids really did so well, even though the days were tiring. We rented a double stroller and I was glad we did! Abby needed breaks sometimes too.</div>
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A big moment for Levi, meeting Lightening McQueen and his very favorite, Mater.</div>
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At the Lego store. Abby's pose cracked me up.</div>
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Levi had one roller coaster that he was tall enough for, Barnstormer, and he LOVED it. We went on it three times and he giggled and squealed every time. It is one of my favorite memories from the trip.</div>
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I love this pic of my loves on the Teacups with me.</div>
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Meeting Merida! This was our longest line of the trip, but it had to be done in Abby's opinion.</div>
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Our second Cinderella.</div>
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We also met some Disney Jr. characters. Here's Handy Manny.</div>
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June from Little Einsteins.</div>
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Jake from Jake and the Neverland Pirates.</div>
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All of the kids got tattoos. Levi of course chose Mater.</div>
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My personal favorites, Phineas and Ferb. That show cracks me up. I think they were Jonah's favorites too.</div>
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The Green Army Guy was fun to meet, except he wouldn't smile! :)</div>
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Abby, Levi, and Grandpa got to play parts in Storytime with Belle. Grandpa was the Knight.</div>
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Here they are with Belle #2.</div>
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We went to the car stunt show at Hollywood Studios and to our surprise Lightening McQueen was in part of it! It was fun because he actually drove around. I wish they had a Mater!</div>
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The last day there for us the Grandparents were gone and we ate at Chef Mickeys. We met Goofy again.</div>
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And Pluto, who Abby said is soooo soft.</div>
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Donald again.</div>
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This was our view from our table at the restaurant. We were the only ones in the restaurant with this view and it really was magical!</div>
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Minnie!</div>
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And Levi's very very favorite of all and the last character we met, Mickey. Jonah liked meeting him a lot too. It really was perfect to eat there on the last day.</div>
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Riding the Magic Carpets (formerly known by Jonah as the magic blankie ride) while Abby waited in line to meet...</div>
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Jasmine and Aladdin. This guy really was a perfect Aladdin. They were pretty funny too.</div>
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We ended up trip by watching the Wishes fireworks show at the Magic Kingdom. It was really beautiful and the perfect ending to our trip. The kids were in awe.</div>
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They showed a 10 minute movie on the castle and it was incredible! I think it was the coolest thing we saw on the trip in my opinion. I have a clip of it below. This picture is when they projected to make the castle look like a castle in Brave.<br />
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I absolutely love this picture of Jonah. It captures how excited they all were. So fun!!</div>
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The last ride we went of was A Small World. Levi, the thrill seeker, was raising his hands to add to the drama.</div>
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What a fun vacation! We are so thankful that we had the opportunity to go and already cherish the memories.</div>
<iframe allowfullscreen="" frameborder="0" height="480" src="http://www.youtube.com/embed/rcRRhV8bOvs?rel=0" width="640"></iframe>Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com1tag:blogger.com,1999:blog-5399214731745551972.post-70156902736735976742013-01-24T22:06:00.001-06:002013-01-24T22:06:54.734-06:00Levi Update at 2 1/2 Years OldI have lots to update regarding what's been going on this week, but it is late and I'm tired. :) I did want to log the videos I took today of Levi though as a benchmark of where we're at. In the last month he seems to have had a bit of a growth spurt and jump in progress! He is not saying "dada" regularly, but can with help. He is not saying his own version of "no" and many other words however, and really is using some key words to try and communicate. We are so proud of him! The second video was just to document what Levi is like "freestyle" communicating right now. He was pointing at something out the window and I thought it was a bird or plane, but I never did figure out what he was pointing at. :( I can't wait for the day when we are able to hear and understand all that he has in that sweet little head!!<br />
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<iframe allowfullscreen="" frameborder="0" height="480" src="http://www.youtube.com/embed/v7YHz7pSZV8?rel=0" width="640"></iframe>Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-34528617723378110492013-01-14T19:55:00.001-06:002013-01-14T19:55:31.090-06:00Talking and Healing<br />
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I went in for a post-op check up today, which was a few days early. I have been having quite a bit of new swelling and pain since Friday that had me concerned and I wanted to get it looked at. Good news! My doctor said that the scar and swelling is healing nicely, perfectly in fact. I was very glad to hear that. He said the swelling is from the filler he put in my cheek called Alloderm and that my body just takes some time getting used to the foreign material in it. I was relieved to hear that it wasn't fluid build up called a seroma as a thought it might be as that can take a while longer to recover from. I'm ready to be over this whole thing! He said that he was hoping that my paralysis would be better than it is right now (no improvement so far), but he tested all of my nerves during surgery and they responded, so he'd be shocked if the paralysis was permanent. </div>
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<tr><td class="tr-caption" style="text-align: center;">I took this picture in the hospital and sent it to my<br />brother the day after surgery saying "Everything<br /> looks normal, right?" (Of course he said yes) I wasn't<br />going to put it on here, but Brian and I still crack <br />up at it, so I thought I'd share. Laughter is the best<br />medicine, right? :)</td></tr>
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I go in for another check up in two weeks, so hopefully by then I'm getting some movement. My right eye doesn't close completely, which is annoying. I get soap in my eye every time I wash my face and it gets dry easily, but he wasn't concerned about this either and it should go away. I still have very low energy and am tired most of the day, but that is to be expected still even for the next few weeks. Please pray that I have the energy to keep up with my kids come Thursday when Brian's parents leave! I still will have my lifting restriction for a few more weeks, but I'm hoping to teach Levi how to climb in and out of the car seat by himself soon. Beyond that, I should be able to manage not lifting him during the day I hope.</div>
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Speaking of Levi, he has had a very good week of speech therapy, really impressing his therapist at UNMC with cooperating and even initiating some sounds. It is still difficult for him to get the sounds out right, but his initiating the speech is huge. Praise God for that! </div>
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Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-62465077946946076712013-01-08T17:01:00.001-06:002013-01-08T17:01:21.935-06:00Thankful.Surgery was five days ago and I just now feel clear headed enough to post. Anesthesia with a side of shock has made me a bit foggy the past few days. I sort of remembered what has happened, but not very well, if that makes any sense. That said, I will recap what happened and where things are now.<br />
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Last Friday I got a call that the surgeon was running a bit ahead, so Brian and I went to the hospital around 9:45, checked in, and then ended up waiting anyway until around probably 10:45-11 or so for me to go back to pre-op. I changed, got an IV put in, answered which side of my face needed surgery, my name, and birth date about 10 times, and got the chance to talk to my doctor. He didn't really say anything new or notable to me, but I didn't think he had his game face on and felt good about that. :) Brian came in the room shortly after, followed by the anesthesiologist. He gave me something to "take the edge off" and I remember feeling that flow through my body. Brian asked him if he would be in the room the entire time during the surgery and he said yes. I asked him if he takes that time to play Sudoku on his phone during surgery and he laughed and said close, he looks at HuskerIllustrated.com. I was close. He also said he looks at my vitals monitor every 20 seconds though. Suuuuuuuure. ;) I don't remember anything after this until I woke up in the recovery room.<br />
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While I was in surgery, Brian and my mom got updates a couple of times from the nurses, basically saying everything was going great! (As if they would actually say anything else....?) The surgery took maybe a bit longer than three hours and Brian and my mom were able to meet with my doctor shortly after it was over. He said that the surgery took a little longer than expected because the tumor had a finger that went up in front of my ear that they hadn't seen. The tumor was also a bit larger than he had thought. He thought it had maybe been there a year and that it felt benign to him. He said he got a good clearance around it of tissue and put in some filler to the dent called Alloderm, I believe. He probably said more than that too, but I'm not sure what else and I hopefully will get more information from him when I meet with him next week.<br />
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About an hour after surgery, I was moved up to my room and they were able to come up and see me. The first thing I remember when I woke up is pain. My jaw was killing me and I just overall was in pain on the right side of my face. Morphine is completely worthless on me and they upped it for an hour probably and I was asking the whole time, can you just get me another drug please? Anything else? That took getting ahold of my doctor and then getting the drug brought up, so it took some time, I don't think I was pain free for a couple of hours after surgery. At that point I was doing OK for a little bit, a couple of hours maybe, then the nausea set in. I was extremely dizzy from the moment I woke up and tired, but the nausea hit it's peak around nine or so and then thankfully got much better after I got it out of my system. I slept pretty well that night, waking up every hour but able to go back to sleep pretty quickly. Saturday was pretty uneventful, although I was very weak and dizzy and needed to get my hydration up before I could leave around one or so. It was good to get home, but I definitely still felt like a hospital patient.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9fxsfDCLphyFUeI2ZATKCFYNhAXYuv79mvpIml1ZorSFr6Ab5aUGxXxaXhBwWBTw9G_68WG2M45egruBU0rn6tsP7CdDtn_bOIMew9vZkj9jS3glkP7VUTuccDXG4lJWESvdc8muOUm6U/s1600/713CC2E1-D153-493A-877F-EB151B6B7F2C.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9fxsfDCLphyFUeI2ZATKCFYNhAXYuv79mvpIml1ZorSFr6Ab5aUGxXxaXhBwWBTw9G_68WG2M45egruBU0rn6tsP7CdDtn_bOIMew9vZkj9jS3glkP7VUTuccDXG4lJWESvdc8muOUm6U/s320/713CC2E1-D153-493A-877F-EB151B6B7F2C.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My new funny face. </td></tr>
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I came home with a drain tube, an ointment, eye drops, and a couple of bottles of pills. I have done OK since being home, but the pain has been more than I had anticipated and I also really hated to have the tube in and having to mess with that. The right side of my face near my ear and my neck was almost entirely numb until last night. I have just started getting feeling back, which feels funny. A bit like a foot waking up after it's asleep, just on a random and constant basis. Even now though, I still only have maybe 50% sensation? Maybe. That is normal though and the bottom half of my ear is completely numb and will probably remain that way forever. One thing I knew was possible, but hadn't anticipated happening is the paralysis or weakness I have above my right eye. It has bothered my eye a bit as my eyelid may not totally be closing while I sleep sometimes, hence the eye drops to help with that. My look of surprise looks more like an inquisitive look at the moment. This may take weeks to months to return, but they do think it will most likely. It isn't numb, just paralyzed. It's weird.<br />
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Last night I started having some issues with my drain leaking (sorry, I know it sounds gross) so today I went in to have it removed instead of tomorrow, which was great. They also told me then that the final pathology came back benign, so that is a huge relief!! I haven't talked much about it, but radiation would have been much worse than all I've been going through with this surgery, so I'm very thankful that the worst of it is over and I can just recover from all of this and move on.<br />
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Thank you so much to all of you have been praying, offering help, and thinking of us during this time. It was been a crazy and fast road and I was telling Brian today that I have really been so foggy and in shock and focusing on getting through this that I haven't been thinking to pray for myself, as odd as that sounds. It is a great feeling to know that people are interceding on my behalf. Brian's parents have been an absolute lifesaver being here as there is no way we could have handled this on our own. I am still at a place where I have little energy to get around the house and attempt to care for myself, let alone cook and care for the kids, so it is such a relief knowing that I don't have to worry about that. For those who have offered to help, Brian's parents leave next Thursday, so we may need a bit more help at that time and I will keep you informed. I will still not be able to lift more than 10 pounds, which means things are tricky with handling Levi, but I'm hoping to have a bit more energy to try and help with the kids and meals. We will keep you updated. Thank you once again for praying and praising God with us that we have made it through and that it's not cancer! I will update again next week once I meet with the surgeon.Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com3tag:blogger.com,1999:blog-5399214731745551972.post-91565304579391920442012-12-28T07:08:00.002-06:002012-12-28T07:08:20.840-06:00Update - Surgery has been scheduled!Your prayers are working already! God was merciful and allowed me to get in and see a doctor yesterday! They said that openings never come up like that, so I am so thankful. The doctor essentially gathered more information and confirmed what we already had suspected. After doing an ultrasound, he confirmed it appears to be "classic" Pleomorphic Adenoma. He said he would be surprised if it was cancerous, based on looking at the shape of it, but he took three needle aspirations (samples) of the tumor and I will hear the test results of that either late this afternoon or tomorrow. Please be praying that it isn't cancer. That would be "a whole new ballgame" according to the doctor in how aggressive he is in surgery and the treatment afterwards. Some good news is that as long as it isn't cancer, he doesn't do radiation, so that's a relief. Also, he won't know until he's in there and sees things how the surgery will impact my nerves and which areas of my face and the side of my head, but he did say that I will have a numb ear lobe the rest of my life as well as numbness possibly around that area as well. I also will have temporary numbness in many areas because he was messing with the nerves. He actually said that helps the recovery to be less painful.<br />
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In the last week, I have also had a lesion appear on the roof of my mouth towards the back, essentially out of no where. He looked at that and said he would like to keep an eye on it. Depending on how it looks next week, he may remove it for surgery.<br />
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Surgery has been scheduled for next Friday! I'm so thankful it will be soon! Ready to get this thing out. I was actually in a decent amount of pain last night and am still sore just from him taking the samples, so I'm even more eager to get it removed. In the meantime, to prepare for surgery I need to go and have a pre-operation physical done on Monday, coordinate speech therapy adjustments for Levi while I'm out of commission, and finish up some work for my <a href="http://signal88.com/" target="_blank">brother's companies'</a> convention that I had been planning and am no longer able to attend. Also, one of my other brothers is coming over this morning to frame a drywall a guest bedroom in our basement. Brian's parents are going to come for a while during this whole ordeal, and we're cheaply able to make them a guest room, so that's great. <br />
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OK, well that's it for now. Please continue praying if you think about it. Just one week away!Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-33450034893322934492012-12-27T08:09:00.000-06:002012-12-27T08:09:22.751-06:00Taking the Good and the BadForgive me if this post is a little disjointed, but I wanted to give an update on Levi and also share some bad news about me (Jenny). It's been a crazy week full off information and I don't want to get too far behind so I wanted to post, but I'm also a little flustered by it all and having trouble thinking clearly.<div>
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<b>Levi - Good News!</b></div>
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Yesterday was our long awaited appointment with the Developmental Pediatrician for Levi and the appointment went very well. I'm not going to go into too much detail, but he did a very thorough evaluation of Levi and his conclusion is that Levi is on target and at an appropriate age cognitively and physically in pretty much every way. He had no concerns in those areas. Verbally, Levi is at a 9-10 month level. Verbally he is very weak, but he has much more language in there than he is able to express and be understood on. So, he essentially said Levi has isolated Severe Apraxia. At this time he thinks that any MRI testing, genetic testing, etc. would be overkill and not give us any information. Apraxia is very hard to understand and we don't know as much as we'd like about it, but it appears to be an isolated condition in Levi, which is a huge sigh of relief. That being said, he did say it is a hard diagnosis to have because it is a long, slow moving road and for us to prepare for lots of work ahead of us. We should keep doing what we've been doing and one comfort is that he told me to focus on encouraging communication from Levi in any from. Leave the speech therapy to the professionals and just really encourage Levi to keep in touch with communicating with the outside world. That sounds much less daunting to me than what I had thought I needed to be doing, so that is a relief. I asked the long term expectations for Levi, as an Apraxic person, and he said that it really widely varies. He expects Levi will be able to attend school, but will most likely need some type of augmentative device (think ipad) to help him communicate and be understood. He also said that it takes about 100-200 sessions of speech therapy before most Apraxic kids see any improvement, so to not be discouraged that it is very slow going. So, we are to keep doing intensive speech therapy with him, four sessions a week, indefinitely, and encourage him to communicate while not expecting him to speak when he can't. This all came as very good news to us and a relief. Praise God there is nothing more going on with him! Oh, and the Dr., whom we were very happy with, said Levi will wear you out, but is very fun to be with. We thought that was a great, accurate description of him. :) </div>
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<b>Me - Not so great news....</b></div>
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Flying home from Ohio, I felt a lump in front of my ear on the plane while my ears were popping. I went to the Dr. that Monday and was told it was a swollen lymph node and it would go away within a month. If not, come back. Three weeks later, I went back to get antibiotics to spur things along since it hadn't changed. After finishing the antibiotic and seeing no change, I asked to be referred to an ENT. Last Friday, I went to the ENT who said he guessed it was a swollen lymph node, but it could also be a growth. Either way, it needed removal, but he wanted me to get a CT Scan to get an idea of what exactly was going on and the location. If it was a growth, as long as it wasn't in my parotid gland, a salivary gland, it would be a relatively easy removal. I immediately went to get the CT Scan and then Monday, Christmas Eve, we got the results that I did indeed have a tumor and unfortunately it is located in my parotid gland, which means major surgery. Wednesday, when offices reopened, an appointment was made for me at the Estabrook Cancer Center for next Thursday so I can meet with Head and Neck surgeons that are able to perform this type of surgery. Essentially the make a 6 inch incision in front of my ear and down my neck and then it's a 6-8+ hour surgery to remove the tumor. It takes a long time to remove it as that is the nerve center for your face and damaged nerves means facial paralysis. I don't know exactly when the surgery will be, but I'm guessing in about three weeks and I'm not sure how long I'll be in the hospital, but perhaps a couple of days. Recovery takes about 2-3 weeks and sometimes they do radiation to follow up, regardless if the tumor is benign or malignant, in order to kill of any remaining tumor that they were unable to get because it was wrapped around nerves. There is an 80% chance that it is not cancerous, but we won't know most likely for sure until after the surgery. For those who like to google what's going on, it's most likely something called Pleomorphic Adenoma, but if you google Parotid Gland Tumor it will give you an idea of the surgery. We feel very blind sided by this whole thing and are just sort of rolling with the punches at this point. Although we were are in shock, we know that we can handle it and perhaps will come out better people because of it. I read this scripture yesterday and was comforted:</div>
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"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18</div>
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We have been through some trials lately as a family, but those verses really sum up our hope. We are being prepared for an "eternal weight of glory beyond all comparison". That doesn't sound too bad, does it? :) Working on not focusing on the seen, but the unseen, and praising God for it even when the seen is particularly discouraging.</div>
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Please pray for us if you think of it. It is a long wait until next Thursday and then the surgery beyond that seems far as I am so very eager to just get this over with. Also, pray that the tumor would not grow or worsen over that time and that radiation would not be necessary. And that the Dr. would have a steady hand and that I wouldn't have any permanent paralysis or damage from the surgery. Thank you! Love to you all! </div>
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Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com2tag:blogger.com,1999:blog-5399214731745551972.post-11983093049379307392012-12-11T21:44:00.004-06:002012-12-11T21:44:50.494-06:00Recently...Here are some pictures from my phone of the last month or so of life...<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/AVvXsEgRUNx1ZOVXyQpKeEmNX6FIzWLuBw6sJUdgT9wcVfL2YO_GV0SN09-2VjHv4kIlxf2KprzrP69K1yB-S2Q1hjRXiJjoSox8gnEy7ppXMaGY3eOjjLUCBwuL3Te2sgpwzG6rYe5bmVoSkAkt/s1600/B24171D8-CDDB-4011-880A-EF62B330D6CF.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRUNx1ZOVXyQpKeEmNX6FIzWLuBw6sJUdgT9wcVfL2YO_GV0SN09-2VjHv4kIlxf2KprzrP69K1yB-S2Q1hjRXiJjoSox8gnEy7ppXMaGY3eOjjLUCBwuL3Te2sgpwzG6rYe5bmVoSkAkt/s400/B24171D8-CDDB-4011-880A-EF62B330D6CF.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our babysitter during our small group? Cars 2. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMIZm_wPYtoqgbu8masAc8KLedodfQlfAy2KKaZdTPMsge-2Z3yuo0HsNbsjFwVXMMFapVnmG4Aiggf4H6igsQw9FQslZtybXWxYALQQW86ITBkWgAmk6T-_ZF0wlnqbKokOAc02LW_Ez4/s1600/FB8A2B6F-DB2A-40E1-A22A-8947868FC3AB.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMIZm_wPYtoqgbu8masAc8KLedodfQlfAy2KKaZdTPMsge-2Z3yuo0HsNbsjFwVXMMFapVnmG4Aiggf4H6igsQw9FQslZtybXWxYALQQW86ITBkWgAmk6T-_ZF0wlnqbKokOAc02LW_Ez4/s320/FB8A2B6F-DB2A-40E1-A22A-8947868FC3AB.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abby doing her best to be 15.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrxbBlKg2Bkngp-3JT8p8oCnwowr_eVgBd3qVu_f1lgsJgU3VsaBQGTYLh_80yRvB5G-gMMDrb-nl8WNvJH3KUczDILi09J4jcwQoZmfJmCHhnVukMcAZNwDLSDSzw7hqaQoS-h8JBVdu7/s1600/0242DDB8-E506-4177-9542-099DAE286973.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrxbBlKg2Bkngp-3JT8p8oCnwowr_eVgBd3qVu_f1lgsJgU3VsaBQGTYLh_80yRvB5G-gMMDrb-nl8WNvJH3KUczDILi09J4jcwQoZmfJmCHhnVukMcAZNwDLSDSzw7hqaQoS-h8JBVdu7/s400/0242DDB8-E506-4177-9542-099DAE286973.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Speaking of which, here she is in Justice for Girls picking out her birthday and Christmas gift ideas to send to Aunt Dana.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs4U5JB_ndaDWp5NtGBVpJjHhyM6ygDJNCEdJ-paIVLW4r-yoISTaki6yqmTQACWjj0zCC_jK8vsDSfXMhBIfZQc5HMcUP_IwlN9tmeAGTpb47tlDlhKlpgycvPNVRhc4oJ_M3Op35rdUr/s1600/223BEE48-95EF-4148-AC4D-D5ED4D2E721F.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs4U5JB_ndaDWp5NtGBVpJjHhyM6ygDJNCEdJ-paIVLW4r-yoISTaki6yqmTQACWjj0zCC_jK8vsDSfXMhBIfZQc5HMcUP_IwlN9tmeAGTpb47tlDlhKlpgycvPNVRhc4oJ_M3Op35rdUr/s400/223BEE48-95EF-4148-AC4D-D5ED4D2E721F.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Apparently Jonah took this picture at dinner. Levi was mostly likely running laps around the table.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Getting ready to take off to see Papa, Mimi, Uncle Mark, Aunt Steph and the cousins!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The boys deep in a game of football</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Buddies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZsOcSGujLtnLVWj6rmpSGaTTmMlNc6aYzGjOUzXtuhJFVrWKDQbSYDpDbvUZ02mU6cDTM8Zh7u0IdLrcpRbAcK_N4L2FfkQfu5PzAEjstV2W539bzjpYFlO51rMIY5Bw2jKwonzhyL6FA/s1600/8F4CE17E-707D-445E-BFA7-6DA372AA5337.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZsOcSGujLtnLVWj6rmpSGaTTmMlNc6aYzGjOUzXtuhJFVrWKDQbSYDpDbvUZ02mU6cDTM8Zh7u0IdLrcpRbAcK_N4L2FfkQfu5PzAEjstV2W539bzjpYFlO51rMIY5Bw2jKwonzhyL6FA/s400/8F4CE17E-707D-445E-BFA7-6DA372AA5337.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love Levi looking at Toby in this one. </td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDxDtREu5KbKv9_v36CVOjC364avMOLtXNoYbPlMd6CBaLHMAzKQj6eX6qi2d__7c8awmp8QQMWU018slIDzsVS5XIM9CUijCnwC1q9hPGeoSJX0ifxECQS9t1dspX-EMEdy4MEgYQX_dO/s1600/0270035D-98F7-4418-A073-F77F4F27CAED.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDxDtREu5KbKv9_v36CVOjC364avMOLtXNoYbPlMd6CBaLHMAzKQj6eX6qi2d__7c8awmp8QQMWU018slIDzsVS5XIM9CUijCnwC1q9hPGeoSJX0ifxECQS9t1dspX-EMEdy4MEgYQX_dO/s400/0270035D-98F7-4418-A073-F77F4F27CAED.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Can't wait to meet you Elliott!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfHkMPTA1wTpj-DpCbFrNfwE4BU0rHv_7oX_0qQsFYn02vN-YQL6ci9PVR6vFpw2dRis8rtsXcucizkL2IPGxKhHVdQ8i7BiKrnzJCas16zjPIXhZHxnRDQ-CUlz7tTEOAAKibogBnll8U/s1600/EB92EEEB-33B2-42E0-A12C-19D5E71B6EED.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfHkMPTA1wTpj-DpCbFrNfwE4BU0rHv_7oX_0qQsFYn02vN-YQL6ci9PVR6vFpw2dRis8rtsXcucizkL2IPGxKhHVdQ8i7BiKrnzJCas16zjPIXhZHxnRDQ-CUlz7tTEOAAKibogBnll8U/s400/EB92EEEB-33B2-42E0-A12C-19D5E71B6EED.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goofs!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH4bvBcSUhTcjx_SUNu5k6WexIefJ_Neyg4DKg2uCq_Mr-gFTiyV9a9rocOaV6vDihNDh3nNrxt5Ye0dzDbiCntz6rKBBAow5_aK0mKBJleQVxuAQyDecXj0JIA3yQyTKJV2BCdAEAAMso/s1600/06D98C3B-CD75-48EF-9A04-5433D1FCBFEE.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH4bvBcSUhTcjx_SUNu5k6WexIefJ_Neyg4DKg2uCq_Mr-gFTiyV9a9rocOaV6vDihNDh3nNrxt5Ye0dzDbiCntz6rKBBAow5_aK0mKBJleQVxuAQyDecXj0JIA3yQyTKJV2BCdAEAAMso/s400/06D98C3B-CD75-48EF-9A04-5433D1FCBFEE.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heading home.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6bFxtXGHi0k80Ro1QmwGp5PIkNjYP99OC2Af05ywHJMGOvwVkL0tETm7JIRriZ_OQw0QvWAoA8Z8yEbIRHMLgIC8DU5UI-Ybkai-uqegZljK37atkz5g6dg6UaZM7Rf6svPA7yJB0ssy6/s1600/40A3F436-1960-45F4-8E21-048630B0686F.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6bFxtXGHi0k80Ro1QmwGp5PIkNjYP99OC2Af05ywHJMGOvwVkL0tETm7JIRriZ_OQw0QvWAoA8Z8yEbIRHMLgIC8DU5UI-Ybkai-uqegZljK37atkz5g6dg6UaZM7Rf6svPA7yJB0ssy6/s400/40A3F436-1960-45F4-8E21-048630B0686F.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little ducks all in a row. This kids having become travelling pros when it comes to going to Ohio.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg73J5alCBm0_qVbrHgZSPoFT5g-bTRT1IdFqdSlGmaq8T0bOU21UE1Rh0_aKu3N-99gDgnvEmjHAxmBDtVBZFYcVpD4UX4DNfKIqu6GQTkkk8yeWxC-ssl-DuUfUFPdORZiz6ykRIoFLMV/s1600/36885E99-133B-4B23-8337-972E42D285E9.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg73J5alCBm0_qVbrHgZSPoFT5g-bTRT1IdFqdSlGmaq8T0bOU21UE1Rh0_aKu3N-99gDgnvEmjHAxmBDtVBZFYcVpD4UX4DNfKIqu6GQTkkk8yeWxC-ssl-DuUfUFPdORZiz6ykRIoFLMV/s400/36885E99-133B-4B23-8337-972E42D285E9.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas shopping! And Brian doing an extremely awkward pose....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmROdMFims1KkASAYbsSW9Neu6n1O-werZI_arnMkYyxs_dGR6m6WMGXfapzPNhqbja0Sbv97zE6pKh1CbboN10_mK-K1NZqK3YPwSzK6tsMuXPlE06CCgFYKkLGNa-2D4EPUwnwPqHX5g/s1600/751316BE-ED58-47D8-928E-54D398E3EEAC.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmROdMFims1KkASAYbsSW9Neu6n1O-werZI_arnMkYyxs_dGR6m6WMGXfapzPNhqbja0Sbv97zE6pKh1CbboN10_mK-K1NZqK3YPwSzK6tsMuXPlE06CCgFYKkLGNa-2D4EPUwnwPqHX5g/s400/751316BE-ED58-47D8-928E-54D398E3EEAC.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Levi saw this at Toys R Us and was smitten. A gift for the yuppy toddler.</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilEt8Kdvst-EYiTTdc4ruFdnnF5Wz29zA_diXV6e1IHZhrIvO1E7H1L7Aj3bj1n0jT77MwTPC3Xq_S5Xohgy9p2tpjYbxyaZ7xGUe92L1bfpDDGjuUQsb-YD7nyLbX7Thrb7nOZGo5jbWa/s1600/735178C4-E50F-4923-8202-DDF8ACEB5065.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilEt8Kdvst-EYiTTdc4ruFdnnF5Wz29zA_diXV6e1IHZhrIvO1E7H1L7Aj3bj1n0jT77MwTPC3Xq_S5Xohgy9p2tpjYbxyaZ7xGUe92L1bfpDDGjuUQsb-YD7nyLbX7Thrb7nOZGo5jbWa/s400/735178C4-E50F-4923-8202-DDF8ACEB5065.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bath time. On the brink of disaster.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrmhW_7h9HL5LWXb7uQcGyzKexWvwl6bAB_54jdcBk8RlbiI2yDIYlH-n_jYk8iuTTf0s4Go0CQKlY5FO_Dbcv3O41UvAX51tGRbiht0lFGjYFLwn3kFoovVTg7HI8lxbkZcMMR06-QCK2/s1600/67B6123E-A4E9-490F-B7C5-8833E5FF1A84.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrmhW_7h9HL5LWXb7uQcGyzKexWvwl6bAB_54jdcBk8RlbiI2yDIYlH-n_jYk8iuTTf0s4Go0CQKlY5FO_Dbcv3O41UvAX51tGRbiht0lFGjYFLwn3kFoovVTg7HI8lxbkZcMMR06-QCK2/s400/67B6123E-A4E9-490F-B7C5-8833E5FF1A84.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We went to a "German" Christmas market and could not get enough of these roasted almonds! We loved the Christmas markets in Germany! Someday we will have to go back.</td></tr>
</tbody></table>
<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/AVvXsEhyOSt7izfPcUvcb9uPScstx8H7zIqLqKGP0brUpvvu0rFiwIFTle1Pw5l5LjAFt0_77sRoQlwlSXOlcAfvJdHawWt3n-lnA3MWmHR4SKgoRc19BPh15dhJvPwZnIXjK3qxHj6iGrbmrLuw/s1600/89ED1EC0-0B9C-440B-BA21-4B3077E9CB1F.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyOSt7izfPcUvcb9uPScstx8H7zIqLqKGP0brUpvvu0rFiwIFTle1Pw5l5LjAFt0_77sRoQlwlSXOlcAfvJdHawWt3n-lnA3MWmHR4SKgoRc19BPh15dhJvPwZnIXjK3qxHj6iGrbmrLuw/s400/89ED1EC0-0B9C-440B-BA21-4B3077E9CB1F.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love these two.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRiA7VSHdNtqJCgk_ihptMHkoisdWHXa8zogg6xoc6BihOBtxdMlhRBgImCDoVte6YN0N_RRYyQNlQromIWyWJQN8JTeJnZ65qpJGijefJmqu_UGbQ-DzpfPSMck1FzHUNK7ZA3v9V7FUg/s1600/89AC5AFF-D60A-44C0-BE67-CA82B8E87E29.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRiA7VSHdNtqJCgk_ihptMHkoisdWHXa8zogg6xoc6BihOBtxdMlhRBgImCDoVte6YN0N_RRYyQNlQromIWyWJQN8JTeJnZ65qpJGijefJmqu_UGbQ-DzpfPSMck1FzHUNK7ZA3v9V7FUg/s400/89AC5AFF-D60A-44C0-BE67-CA82B8E87E29.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abby on her fifth birthday, wearing her new birthday dress from Papa and Mimi. Couldn't be happier.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwJFrL158GtbAOoRkh-uH1tzYpXWx6OVRm3TQBR4g20L92rQHs-G9fl_e_ghXZqsYG0pRfpzFUR9DcVttk4wAocKze16aFM0aTKAllan6sVU0Pwv5fcOwn0RxCvq7lNEunvhQ3Mml8dpOQ/s1600/A3F1E498-47EB-447F-981C-407BB627CAE1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwJFrL158GtbAOoRkh-uH1tzYpXWx6OVRm3TQBR4g20L92rQHs-G9fl_e_ghXZqsYG0pRfpzFUR9DcVttk4wAocKze16aFM0aTKAllan6sVU0Pwv5fcOwn0RxCvq7lNEunvhQ3Mml8dpOQ/s400/A3F1E498-47EB-447F-981C-407BB627CAE1.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Party time at her pick, the Amazing Pizza Machine with her two bffs.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMiWlFqePQvf8bE3_KBjr5QrhDGraYCHLoMeEXYjDk7YlRAGA_JQ0MHHCslD5dGBNWqH2XUyjn7hGB70Ymz0Ey7YglA7up0RQQFZGylE_GaCKCeru_nrUefdJlQVdGOf1GlMPvsIC2Ldt4/s1600/225ECAB5-87CB-44DB-8ACC-E193E91B7F40.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMiWlFqePQvf8bE3_KBjr5QrhDGraYCHLoMeEXYjDk7YlRAGA_JQ0MHHCslD5dGBNWqH2XUyjn7hGB70Ymz0Ey7YglA7up0RQQFZGylE_GaCKCeru_nrUefdJlQVdGOf1GlMPvsIC2Ldt4/s400/225ECAB5-87CB-44DB-8ACC-E193E91B7F40.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Frog Hopper! A crowd favorite, Levi's in particular.</td></tr>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Y2CngWvzPwoSnF62HAGUdHw5GQ8UodEeISVJLfnE0xl8h8PyFy506aNOlF07gFAc6Yx28X1MyynKRoHzWRuDCD5hTa1vkwRfhfKv2jM7yjQ1XVvEEEtM-T88ErpuYtdg2I2XQ3YwID_H/s1600/12D21500-6B02-4F65-906A-FE132C765C44.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0Y2CngWvzPwoSnF62HAGUdHw5GQ8UodEeISVJLfnE0xl8h8PyFy506aNOlF07gFAc6Yx28X1MyynKRoHzWRuDCD5hTa1vkwRfhfKv2jM7yjQ1XVvEEEtM-T88ErpuYtdg2I2XQ3YwID_H/s400/12D21500-6B02-4F65-906A-FE132C765C44.JPG" width="400" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikTLni7C99Gll8KZJ40NaJFxyRlQZYO6TWffDi_J4rpI7xw_a0hzYc3CTsSUUvp91RfDvSE6dfeHidqb7wG4401e3XJ3JWb0ercL4voq0iWJ9qQWdYNU5BGNue48wAFBZHmSokcTIJg5d9/s1600/F4AD9545-4E0D-4D53-8FE9-63951319F025.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikTLni7C99Gll8KZJ40NaJFxyRlQZYO6TWffDi_J4rpI7xw_a0hzYc3CTsSUUvp91RfDvSE6dfeHidqb7wG4401e3XJ3JWb0ercL4voq0iWJ9qQWdYNU5BGNue48wAFBZHmSokcTIJg5d9/s400/F4AD9545-4E0D-4D53-8FE9-63951319F025.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet girls!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCwMdqOQh4bKBkuL3c-qX7ViMFGNWczjm_vnNkGNXoHL0acYj6NbubuPoEZaC6LaHp5Gu9FJuQzUxRw21QmaFiVbsJeXmNfZq_yGp0lGBUq91i-F0z-wKLrPkweWGsR7mNJi2bKmA0LLb7/s1600/03287F49-8D80-45AB-B538-4BA20B9D949D.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCwMdqOQh4bKBkuL3c-qX7ViMFGNWczjm_vnNkGNXoHL0acYj6NbubuPoEZaC6LaHp5Gu9FJuQzUxRw21QmaFiVbsJeXmNfZq_yGp0lGBUq91i-F0z-wKLrPkweWGsR7mNJi2bKmA0LLb7/s400/03287F49-8D80-45AB-B538-4BA20B9D949D.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Making sugar cookies. Yes, there are a few Star Wars cutters in there.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzFvmC3XMtzN58lB9LbXYSFCl8pHztVRaxNEXbn_3AfNtkhBeTPQoRDrpzj7RuGeZtOpLw5tavr3NhfMEGLR5C6vJcAY58fwOEXN23wxh1NsB3x7fPShIjIKYxb-C3vfEHZPVmD9W4w2nR/s1600/3382DB03-91AF-41EA-8361-7C38785035AB.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzFvmC3XMtzN58lB9LbXYSFCl8pHztVRaxNEXbn_3AfNtkhBeTPQoRDrpzj7RuGeZtOpLw5tavr3NhfMEGLR5C6vJcAY58fwOEXN23wxh1NsB3x7fPShIjIKYxb-C3vfEHZPVmD9W4w2nR/s400/3382DB03-91AF-41EA-8361-7C38785035AB.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even the camels couldn't keep Levi awake through the Westside Christmas Pageant.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_rWacle_ES5xR5SBvlomEC5ObLwgmTxQnEZ-VA0Nul5N0eirzA1u1dAquknA-5yswCLrlg22v3jEg6qOUN6xx-iofqTK2Xg85PuL56WjNoN7tUJh0idt29EhJo9Pb58mkPbFwpNAl1ij/s1600/AA6542F0-ACDA-4847-8779-77DDA43171A5.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_rWacle_ES5xR5SBvlomEC5ObLwgmTxQnEZ-VA0Nul5N0eirzA1u1dAquknA-5yswCLrlg22v3jEg6qOUN6xx-iofqTK2Xg85PuL56WjNoN7tUJh0idt29EhJo9Pb58mkPbFwpNAl1ij/s400/AA6542F0-ACDA-4847-8779-77DDA43171A5.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Showing off his "look mom, I can hold the ball with no hands!" skillz. He doesn't have to say it. His look tells it all. :)</td></tr>
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Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com1tag:blogger.com,1999:blog-5399214731745551972.post-20452356151874504202012-11-30T13:38:00.003-06:002012-11-30T13:38:54.784-06:00Dada!!!A very big day in our house! For the first time in probably 6 months, Levi can say "dada"!! He doesn't use it on his own yet and needs some prompting, but he can say it! Right after we left speech therapy, Levi and I met Brian and Abby at Costco and had to show it off. You can't see it on the video, but dada is beaming. :) (P.S. Levi is a bit distracted as he's sitting on a super awesome jeep scooter as he's talking)<br />
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<iframe allowfullscreen="allowfullscreen" frameborder="0" height="480" src="http://www.youtube.com/embed/M2se-0dv2J0?rel=0" width="640"></iframe>Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com4tag:blogger.com,1999:blog-5399214731745551972.post-51553146792108848382012-11-26T18:17:00.002-06:002012-11-26T18:17:50.014-06:00ConnectionsFor those who are friends with me on Facebook, you may have heard that we were able to Levi evaluated at the Cleveland Clinic last week by a Pediatric Neurologist. There is a story funny story behind all of this that I didn't put on Facebook, but I think it is entertaining enough to share.<br />
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<tr><td class="tr-caption" style="text-align: center;">At the Pediatric Neurologist, playing with daddy's<br />old Transformers</td></tr>
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<br />Within the FCA network, Brian has gone to many Bible Studies over the years. When we lived in Lincoln, one he regularly went to one on Friday mornings at a diner in town and we lovingly referred to this study as the "Old Man" Bible Study. It is a bunch of guys, all over the age of 70 who order oatmeal with bugs (that's oatmeal with raisins in diner talk) and chat. One of the frequent attenders of this early morning study is Tom Osborne. Well, a few weeks ago, Brian's boss was at the Old Man Bible Study and mentioned Levi in a prayer request, sharing about what's going on and his January appointment with the Pediatric Neurologist. Apparently Coach Osborne felt compassion for how far off this appointment was and offered to help and see if he could get it moved up. A couple of weeks went by until last Monday, while in we were in Ohio, Brian spoke with a regent of UNL who had been asked by Coach Osborne to help us out. He contacted a Vice Chancellor at UNMC in Omaha, and before we knew it, Levi had an appointment the next day (last Tuesday) with a Neurologist. Well, this was amazing, but we were in Ohio for Thanksgiving. Bummer. Brian mentioned that we were close to Cleveland Clinic (ranked #3 in the nation for Pediatric Neurology) and they said that if we were able to get in there, to go ahead. So, last Tuesday morning I made a phone call to the Cleveland Clinic and lo and behold Levi was able to get in that afternoon. Before we knew it, Brian, Levi and I were off to Cleveland with Jonah and Abby staying to hang out with Papa and Mimi.<br />
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<tr><td class="tr-caption" style="text-align: center;">Driving through Amish country.</td></tr>
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The appointment itself went well. Levi cooperated for his part, but mainly we talked about what's been going on with him and his history. The Dr.'s opinion is that Levi has one of three things going on: 1) Something called Landau-Kleffner Syndrome, a seizure based condition that damages the language part of the brain, if I understand correctly 2) Autism 3) Apraxia by itself and we just won't know what's causing it. To rule out Landau-Kleffner, she wanted him to have an EEG and we were able to get it scheduled for the next day.<br />
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The EEG was an experience and overall it went well, but I'd rather not ever do it again. They swaddled Levi up in a blanket and wrapped taped around him so he couldn't grab the wires while she put them on. She first measured his head and marked where the electrodes needed to go and then glued on and blow dried the glue of all 20 electrodes. The whole process probably took 20-30 minutes. He hated it, fought and cried for probably half of it, but the blessing in that was that he was so worn out from the process that he fell right asleep on cue two minutes into the test. Thank you for praying!! He slept for a bit, then she had him woken up, flashed a strobe light in his eyes, and had me hold his eyelids shut for a few seconds. The test itself was 23 minutes I believe. Thankfully, they were able to get a very good reading and all went well on that end. After that, she used a type of fingernail polish remover with oil to dissolve the glue and get the electrodes off and then washed his head. We were glad to be done.<br />
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<tr><td class="tr-caption" style="text-align: center;">Post EEG. We were all glad to be done!</td></tr>
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Later that night, after we were back at Brian's parents, the Neurologist called to say "His EEG came back normal. OK? Thank you. Goodbye." Not exactly Mrs. Information for me, but I was glad everything was OK and we could rule out Landau-Kleffner. While most people agree Autism is very unlikely, we are mostly likely going to do a type of Autism testing that she recommended called ADOS to get a better picture of what's going on. I spoke to the people at Munroe-Meyer about it today and hopefully should get more information regarding it this week. Today I also had a woman at Munroe-Meyer (not sure of her title, but she observed Levi) suggest that we may want to have genetic testing done as well as an MRI. Hoping to get this Developmental Pediatrician appointment moved up so we can knock out some of this other tests and unknowns! So, the road continues, but we are thankful to have gotten one Dr. appointment and test out of the way. Levi is charming people all along the way though! Everywhere we go they are all talking about what a cutie he is. And they're right.Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-55798317956230209612012-11-15T21:17:00.004-06:002012-11-15T21:17:57.352-06:00Unequipped Having a son suspected to have a rare neurological disorder puts you into a sort of research frenzy. While I definitely believe you can have too much information, I would much rather be over informed that naive when it comes to my kids. Over the last few months, I have Googled anything that I can think of in relation to what's going on with Levi. While overall it has been very helpful and I'm glad to have more information, it also left me with a sense of helplessness. I so badly want to help Levi and give him everything that he needs to begin this path to speaking, but I am left feeling so very unequipped. I don't know the first thing about neurology, speech therapy, developmental disorders, let alone how to treat things within these fields. A huge part of Apraxia is getting lots and lots of therapy, which we are now doing four times a week, but to keep the process moving along, much reinforcement needs to be done at home.<div>
Apraxia is very one step forward, two steps back. In therapy sessions, Levi will play for a minute or two, and then the timer goes off and its work time. He needs to repeat five sounds for the therapist and then he can go back to playing. This time is so encouraging, but also sobering. Levi will try and try to repeat these sounds.... Baa for example. Levi can say /b/ and /a/, but putting them together is a challenge and does not come naturally. His work time goes like this: he gets prompted to make the /ba/ combo and maybe after five attempts succeeds. He then can repeat it a second time perhaps immediately. Yes, progress! Maybe he's getting it?! So, he goes and plays, the timer goes off, and he's in the chair again. And we go back to /ba/. With no luck. He will look at the therapist, study his lips, make an attempt, and just cannot do it. Frustration sets in, Levi starts squirming and trying to leave the chair, and we go back to trying to get the /b/ sound out of him again and wait to try /ba/ another day. One step forward, then quickly it's gone.</div>
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On Monday I asked the therapist if this is normal, and he assured me that with motor planning disorders such as Levi's, it is. It's a long road. One that is best done with 95% of the work done at home. He gave me pointers on what to do to get in some more repetition with Levi without wearing him out, but I still was left feeling entirely unequipped. I want to figure out what's best for him, do what's best for him, and provide the best environment for him to thrive in, yet I can barely get through a day keeping three kids in line, scrubbing my toilets, helping my husband, putting three meals on the table, making sure homework's done and kids are at practice on time, etc. etc. etc. Unequipped. I am just one woman, and my first name isn't Wonder. And as this word unequipped kept popping into my head, thankfully a verse that had been planted there long before popped in after it. "All Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness, that the man of God may be complete,<b> equipped for every good work</b>." 2 Timothy 3:16-17.</div>
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<tr><td class="tr-caption" style="text-align: center;">Levi, one week old.</td></tr>
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I am equipped! Through Christ, the Bible, and the Holy Spirit, God has provided everything that I need to handle what he has put before me. Alone, no I cannot handle this all... not even close! But my faith in God allows me to trust that his word is true and his word tells me that I am equipped for <b>every</b> good work. Not just the works that I expected to have in my life, laundry, meals, cleaning, childcare, but every good work, including speech therapy, neurologist in training, and toddler mind reading (thankfully toddler boy minds mainly involve food, sleep, and trucks). So, I was and am encouraged. No, my dumb mind alone, cannot handle this, but God intercedes, giving me the strength and wisdom to do the good that he would have me do. And that's amazing.</div>
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I was also encouraged this week as a was reminded that God gives grace to the humble (James 4:6). That doesn't mean he gives out grace on those who don't think they need it. He gives it out, yes, but when we see that we cannot do it on our own! And what a great place that is to be. I cannot handle this on my own! Overwhelmed, for sure, but what does that feeling make me do, but turn to my Savior who gladly takes my burden. The all-knowing, all-loving, all-powerful God takes my burden in his perfect care. I have no reason to worry! And I receive grace. Wow, do I praise God for that. So, I am thankful. Not for my circumstances, but for where they bring me, which is at the throne of God, humble, knowing that I cannot handle this, but that he has and will.</div>
Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com2tag:blogger.com,1999:blog-5399214731745551972.post-47897471458780647282012-11-06T17:20:00.003-06:002012-11-06T17:20:47.792-06:00The Learning CurveYesterday, I was asking the Speech Pathologist at Munroe Meyer what I should communicate to the school district regarding a plan for Levi moving forward. He told me to hang on a minute and returned to the room with a few pages describing the technique he is using to try and get Levi talking. When I came home and had a moment to look at it, this was written at the top:<br />
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"In the initial stages of assessment, diagnosis and intervention, the parents of and others close to children with Childhood Apraxia of Speech (CAS) or suspected CAS (sCAS) are embarking on a <b>huge learning curve</b>.
Parents may<b> feel 'swamped'</b> with information from SLPs/SLTs and from other sources – some reliable, and some not-so-reliable.
It is a time for hard work for parents as they keep the child busy with focused, relevant, enjoyable activities that work from the child’s strengths and interests."</blockquote>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCHwFCJYxScU-JYzRgLltmNjagHWDKAcZLQwp5dghPtDvD94nmbfvjYhLsH1FtuGsLKOiSnKG6RSKYtKzitUVX_k30OrOoKfl2rHn4TPXb1hX_I01m9QpR0sNL9t1PV9XtRCk8lNwd-U2q/s1600/Nyffeler+Family+-0032.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/AVvXsEiCHwFCJYxScU-JYzRgLltmNjagHWDKAcZLQwp5dghPtDvD94nmbfvjYhLsH1FtuGsLKOiSnKG6RSKYtKzitUVX_k30OrOoKfl2rHn4TPXb1hX_I01m9QpR0sNL9t1PV9XtRCk8lNwd-U2q/s320/Nyffeler+Family+-0032.jpg" width="213" /></a>Oh man, did that describe how I have been feeling. The word overwhelmed has come out a lot as people ask how things are going for us, but the above paragraph is a better explanation. The article he gave me was a description on how to work with "non-verbal" kids with "very severe" Apraxia. Gulp. Although it still has not been officially diagnosed, he also used that word in describing Levi in our appointment. I suppose either way, it's the closest suspicion of what is going on. Also, in his speech therapy appointment with the school district today, the therapist told me that she notices that Levi can very obviously hear, but that he often makes sounds reminiscent of a deaf child. He bunches his tongue up in the back as a deaf child would. I told her it was interesting she said that, because I had heard a few kids on Youtube with Apraxia that were a bit older than Levi and I had made the same comment to Brian, that you could understand them, but they spoke as if they had some kind of deafness.<br />
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It has finally settled in that life has and is going to change largely for us, particularly Levi and I. This is certainly not the way I every could have imagined this year going for us, not to stay I am devastated by losing <i>my</i> plans for this year. It is more an adjustment to something so foreign and unexpected. I told Brian the other night that it feels like we woke up one morning and discovered that our child had suffered a stroke. Levi hasn't, but Apraxia is a common side effect of a stroke and I do feel that although it is most likely something he was born with, it has come on us all of a sudden. He is having to learn to talk, not again, but for the first time. We have speech therapy appointments four times a week now with possible Occupational Therapy being added to the list (he is getting evaluated on the 16th). I am definitely viewing our world and the future differently for us as well. We are going to put a picture board in the kitchen where he can grab a picture of the food he wants instead of hanging on the fridge or grabbing what is in reach in the cupboard. I am uneasy about leaving him in the short and long term future, as I am and will for a long time be his translator. So, yes, there is a learning curve and I feel like we will be moving down on that curve until we can start our approach back up. Once we make it through the OT evaluation and the Neurology appointment, perhaps I will feel like we are on the upswing.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEm2P3Q1vj_V7tfCYwCVSLovo2B9QHYpl-wd4xzVMy21VSvztXsnqogzrcCn8jwnaXJ1VyO7qwppns5KL6njUrVOKTslDI8uzBZJ0amhkTdCKGpzkeVAhKqsmDO3yS5tyrNBeU6u3bZUiy/s1600/Nyffeler+Family+-0027.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEm2P3Q1vj_V7tfCYwCVSLovo2B9QHYpl-wd4xzVMy21VSvztXsnqogzrcCn8jwnaXJ1VyO7qwppns5KL6njUrVOKTslDI8uzBZJ0amhkTdCKGpzkeVAhKqsmDO3yS5tyrNBeU6u3bZUiy/s320/Nyffeler+Family+-0027.jpg" width="213" /></a>A lot of you have asked me if Levi will ever learn to speak. The answer is most likely yes! While he is very behind and it will take years of work, it is very likely that he will speak and speak clearly enough to be understood. So that is a huge hope that we have every reason to believe is possible.<br />
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OK, well this has maybe been a little depressing (sorry!!), so I will end with another funny story. At the Munroe Meyer Institute the speech department is on the third floor, so every time we go we get to walk through three automatic doors, down a hall, turn a corner, and on an elevator. All along the way Levi is hitting every automatic button in sight and for those of you who know Levi, he does so excitedly. :) Well, when we were waiting on the elevator and going up to the third floor, as soon as the door opened Levi yelled an excited "Ahh!" and started sprinting off the elevator. A poor janitor was standing on the other side of the door with his cart and screamed a bit at this bursting ball of energy that was running by him. Thankfully, he started to laugh and it was pretty funny seeing Levi freak him out. He said he just wasn't expecting that to happen when the doors opened. Who would be? Anyway, I thought that was pretty funny. I need to try and get Levi to tone it down a bit on the elevator I guess.<br />
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<br />Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-46025662161539863432012-10-30T16:36:00.000-05:002012-10-30T16:42:47.829-05:00Showing Off<div class="separator" style="clear: both; text-align: center;">
Here's Levi showing off some of his new sounds. I think being giggly is half of his problem. ;)</div>
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Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com3tag:blogger.com,1999:blog-5399214731745551972.post-15033230176526777002012-10-29T19:43:00.006-05:002012-10-29T19:43:59.430-05:00The Good, the Bad, and the Forming of a PlanWhat do you want first? The good news or the bad news? We will start with the good.<br />
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<tr><td class="tr-caption" style="text-align: center;">Levi, holding his sucker, waiting to see Paul,<br />and feeling like he's big stuff.</td></tr>
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<b>The Good</b><br />
Praise God we were able to go to Levi's appointment today with the Speech Pathologist at UNMC! I kept waiting for the phone to ring saying that they needed to cancel (because I'm paranoid), but it happened! So thanks for praying. Overall the appointment went well, I think. The Speech Therapist, Paul, was super friendly and he and Levi hit it off. At one point he had Levi rolling in laughter while playing with the bubbles. He also definitely has great skill in getting Levi to make new sounds. He would get Levi to do a series of 10-20 attempts at a sound by not letting Levi do an activity until he made the sound. They were building a puzzle truck toy and for each piece, Levi had to make the /ou/ sound, the closest thing Levi could attempt at this point to say "out". It took a lot of concentrating and studying Paul's face, but Levi was able to say it! He did the same thing with "my". It took some work, but Levi was able to say it! I was getting choked up in there hearing these new sounds out of my sweet boy's mouth.<br />
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<b>The Bad</b><br />
Paul's assessment of Levi was a bit hard to hear. First, he feels that Apraxia is something that really can't technically be diagnosed until a child is 7-8 years old. For you to know that the delay is truly not caused by anything else, you can't be sure until other causes are ruled out, which is a matter of age and time. So, while Levi may have delays consistent with Apraxia, he would not diagnose it. Second, in his estimation, Levi has motor planning issues. (In my reading, many see that as the same as Apraxia, but apparently there is a difference somewhere.) He noted that as Levi was making the /ou/ sound and saying "my", he could say it once and then not remember how to do the next time. He also could say ba ba ba ba, but to only say one ba was difficult. That rang as a motor planning problem to him. He also noted that Levi perhaps appeared to have "Limb Apraxia" or motor planning issues with his hands, arms and legs as well, which is something I had suspected, but was still disappointed to hear. Signing is difficult for him, he still cannot point to facial features correctly, and he even as an infant until now, there has been some evidence to motor planning issues in a few areas. Third, he was concerned about the regression as well. Usually it is Autism in his experience, but he was leaning towards not thinking Levi was Autistic. That would be hard to call in the short time they were together and Levi's other therapists and pediatrician are adamant that isn't the cause. I agree that that is not the case. That being said, the cause of the regression could be something "scary" in his words, or a mystery we will never understand. He thought we were taking wise steps to seek a neurologist.<br />
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<b>The Plan</b><br />
Where on earth do we go from here? Good question. I have no idea, but here's the current plan... For starters, Paul is going to see Levi twice a week for 30 minutes at a time. I am very excited about this as he made the most progress we have seen thus far. The downer is that it is on Mondays and Fridays, about a 30 minute drive away, and Abby has preschool Tuesdays and Thursdays. So, I will be using lots of gas and free mornings. Overall, a small price to pay to get Levi what he needs. And the clinic is free, which is amazing! Here's a <a href="http://www.walk-rite.org/" target="_blank">link</a> to it if you're interested. We are also going to continue seeing the speech therapist through Early Intervention. I am going to see if I can meet with her twice a week for shorter times instead, but I'm not sure if that will work. The more frequent, brief sessions, the better. We are also going to look into seeing if Early Intervention will have him evaluated for physical therapy and any global motor planning problems they could assist with. Finally, we are going to figure out a system to get him to communicate in a new way. Paul thought that pictures that he could point to or special Ipad apps would be very helpful for him. He needs to see that he can "control his world" in Paul's words and starting to point at pictures of what he wants will get him to open that communication door, we hope.<br />
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So, overwhelming. Never in a million years did I ever think this is where things would be now just a year ago, but God knew! Although he may have challenges we didn't foresee, Levi is still a sweet, funny, cuddly guy that we love so much it makes our heart hurt. And I wouldn't have him any other way.<br />
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I will end with a funny note. As the session was coming to an end and Levi had gotten used to having to mimic all of the sounds coming out of Paul's mouth, Paul was looking at his schedule and blew out of his mouth an "I'm overwhelmed at how busy I am" kind of sound and Levi, playing with his trains on the table, immediately blew and made the same kind of sound. We all got a kick out of that. He also would scrunch up his nose sometimes trying to make the /ou/ sound, and Paul said "oh, sorry... did I scrunch my nose on you?" Monkey see, monkey do.Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com1tag:blogger.com,1999:blog-5399214731745551972.post-77272906464686973532012-10-24T12:43:00.003-05:002012-10-30T16:40:42.346-05:00Levi Today<iframe allowfullscreen="allowfullscreen" frameborder="0" height="360" src="http://www.youtube.com/embed/nJcwxl0rNUw?rel=0" width="640"></iframe>
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Here is where Levi is at today with his speech, after three months of speech therapy through Children's Hospital and Early Intervention. While he has added a few new sounds, such as /t/ /h/ /p/, the only word that he says that is able to be understood is "mama". A few things from this video that point to Apraxia:</div>
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<li>You may notice that he also pauses between saying two sounds, like Abby sounds like "Ah eee" not"Ahee".</li>
<li>He also drops of the consonants of any word that he is saying, other than "mama", as you can tell in "Ah eee" for Abby.</li>
<li>He has problems pointing to features on his face correctly when named sometimes. This can be a sign of Apraxia and part of the mental block between the brain and the mouth/face. </li>
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A few have you has asked me if Levi is really frustrated and I would say yes, but it's really hard to say what is him just being a two year old and what is due to lack of being able to communicate. The greatest example of frustration is that riding in the car has become very difficult. He sits in his seat and points to stuff on the floor yelling "mama... mama.... mammmmaaaa!" and I have no clue what he wants. It is not easy to drive and figure out what of the 50 things he wants (it could be anything in my purse, buttons of the dash, toys on the floor, etc.) and he usually ends up crying and giving up, definitely frustrated. Sometimes I figure it out and tell him no he can't have it, but if I can't figure it out, the poor guy just gets sad. When we are home though, generally he just goes after what he wants without asking. He is very independent for the most part and will narrate in his own language along the way, but overall in those situations he is fine. It's when he can't get an item and is unable to communicate with those who can get it that he really is upset.</div>
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We are anxious for the appointment on Monday! We heard from another speech therapist that this is "The Guy" to go to in the region, so we are hoping for some answers, or at least a plan to move forward. Isn't he the cutest though? This guy will want to give him therapy just on the cute factor alone. </div>
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Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0tag:blogger.com,1999:blog-5399214731745551972.post-31603155147423090772012-10-19T14:05:00.001-05:002012-10-19T14:05:22.061-05:00A Voice for LeviSo now for the latest change in 2012 for the us. Some of you know that Levi, who is now two and three months, has been in speech therapy since turning two. At two, he had few words, around 10-15, and didn't use them very often, so we hoped therapy would help encourage the speech process along for him. In some ways it has gone well as he really enjoys it, tries very hard, and has repeated a few new sounds back to us. However, during this time he has not had any overall speech improvement and has actually lost any spontaneous use of words, except for the word "mama". <br />
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<tr><td class="tr-caption" style="text-align: center;">Levi feeling pretty awesome in his new pants.</td></tr>
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Last Friday in one of his speech sessions, his speech therapist through the school district mentioned that she thinks he may possibly have something called Apraxia (also known as Childhood Apraxia of Speech). With Apraxia, kids know what they want to say and have a grasp on language, but their brain is unable to send the message to their mouth to form the words. They essentially cannot naturally tell their mouth how to move to form the words they want to say. It is a neurological disorder that can be genetic or, rarely in the case of children, caused from some neurological damage. After hearing this news, we met with his pediatrician and another one of Levi's speech therapists and both also had concerns regarding his speech regression and lack of progress. Because Apraxia is so rare, none of them feel comfortable enough to diagnose it or perhaps even give him the treatment he needs if it is indeed Apraxia. We have now been directed to have him evaluated at a clinic in Omaha that is "the authority" in the area on Apraxia, the Munroe Meyer Institute, and have an appointment for October 29th. We also have an appointment for January 2nd for him to be evaluated by a Pediatric Neurologist to make sure there are no other underlying causes of the regression.<br />
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So, where this all leaves us today is with a few major changes. First, there is hope that Levi will learn to speak (in general Apraxic kids are able to do this), but it takes hours and months and years of therapy. Lots and lots of therapy. So the first major change is that we will be turning things up a few notches with him, doing therapy three to four times a week with even more supplemental practice added in daily with Brian and I. Whether he is diagnosed officially with Apraxia or not, the therapists all agree that he needs more treatment than he's getting now. <br />
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The second major change is a perspective shift. Levi has lots to say, this has always been clear, but now we know that the reason he isn't communicating it clearly is because he can't. How frustrating for him! The huge change in perspective is just the understanding that this will most likely be the case for quite a long time. And as he gets older, with friends, in public, at church, etc. it will only get more frustrating for him as the gap gets larger between him and other kids his age. We are going to need to find new strategies and ways for him to get what he wants to say across, and thankfully with the help of technology and sign language, we can begin to walk down that road. The center in Omaha where he is going to be evaluated specializes in helping in these areas.<br />
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The third change, while not so major, is that I would like to blog a bit through this process for few reasons. First of all, there are many out there who love and care for Levi and this will be an easier way to update all without having to repeat everything umpteen times. I also want to blog about this so that I have a record of how things are progressing and improving for him. I hope to put video on here, as I already wish I had video of the words he used to say before he regressed. But third, I would like to blog about it so that others who are perhaps in the same situation will have more information and bearings for this speech journey. There is so little out there on Apraxia and the little information that is out there is rather bleak in nature, so if we can help anyone else as we go down this unclear road, that we are eager to do that.<br />
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So, in the mean time, if you think about it would you pray for Levi and our family? Pray that we can know the correct path to take to get Levi the help he needs, that there is nothing else that is going on neurologically to be concerned about, and also for patience as we are anxious to get Levi the help that he needs as soon as possible. With Apraxia, the earlier the treatment, the greater and faster the success and I am an impatient person in general. Add in the fact that this involves the health and well being of one of my kids and two seconds seems like to long of a wait.<br />
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I plan on updating after his appointment on October 29th and perhaps do a video in the meantime to log of where we are now. And to show off his cuteness. :) Thank you for praying! Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com3tag:blogger.com,1999:blog-5399214731745551972.post-49382149511252341892012-10-16T21:32:00.000-05:002012-10-18T20:17:03.888-05:00Catching Up<div class="separator" style="clear: both; text-align: center;">
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Well, it has been a long time since I have blogged, but it has not been without reasons. First of all, I have three young kids. Get off my back. Second of all, the end of 2011 and certainly 2012 thus far have brought many, many changes. So far this year, we have sold our home, lived at my parents for 2 1/2 months in the interim, then moved into our new home. We have changed churches, leaving our former church to help plant a new church in the Gretna area. This was also the reason for our move. (More info on the church <a href="http://www.providencene.org/" target="_blank">here</a> if you're interested). We have also changed schools, which was thankfully an easy transition. All of these changes have drastically changed life as we knew it, but all have been exciting and positive. So, it's been a busy, busy time, but also very exciting. <br />
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What hasn't changed, is Brian's job. Many people ask us, so to clarify he is not a pastor at the new church. We are simply heavily involved in helping plant it and leading in areas as needed. Another thing that hasn't changed is that I am still doing event planning on a part time basis as I stay home with the kids. That makes for about 2 1/2 full time jobs. Levi is one person's full time job. Abby, Jonah, and Brian are another. Finally, another thing that hasn't changed is that the kids are still amazingly cute, in case you were concerned. As proof, here are a few pictures I have managed to take in the last year below.<br />
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<tr><td class="tr-caption" style="text-align: center;">Snow is so fun!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She's 4!</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-kwDliAY9nls/TtRH-6qInvI/AAAAAAAAC3I/PnxhW2vJYJE/s1600/023.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="http://4.bp.blogspot.com/-kwDliAY9nls/TtRH-6qInvI/AAAAAAAAC3I/PnxhW2vJYJE/s640/023.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We went downtown for Thanksgiving just as our own little family and stayed over night for the turning on of the lights last year. It was such a fun time and treasured memory.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cousins! We went to Ohio for Christmas and as usual, had a blast for family. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Jonah turned six and celebrated in superhero style.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Daddy-Daughter Dance</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We partied hard as Levi turned two in July.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl3jg9VsY3eDqKEma48Bq5sxHhmJKMZSgY84ASMnGbDIqq6Rzv_Q4JMRVjyo-FoWK2sdVlJp904zm4aqalXQh7WTLDr0MsKE38wsqcUoopxr-IalmUeo1wrlaIY6jjw23hqA3EsVqPwoNx/s1600/17C72ACC-7543-4E77-A491-CE78F9C889A4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl3jg9VsY3eDqKEma48Bq5sxHhmJKMZSgY84ASMnGbDIqq6Rzv_Q4JMRVjyo-FoWK2sdVlJp904zm4aqalXQh7WTLDr0MsKE38wsqcUoopxr-IalmUeo1wrlaIY6jjw23hqA3EsVqPwoNx/s400/17C72ACC-7543-4E77-A491-CE78F9C889A4.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our new backyard. Can you believe it? It's beautiful.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5ZsYf5v62seIGnmaRdyuSCJzbPIkATG8iP0nZHW1qeteDcDGwhw2vkRCxW905UHtGA_1HJHjJ-_O1bHzxedvEkeMuTf0gHy6KUMNx8kSutNqWhuj4x6dwzM7gzfpn9LaAr8q-l5WahBAA/s1600/523C1E38-AFF7-4EFF-9896-937B09B534CE.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5ZsYf5v62seIGnmaRdyuSCJzbPIkATG8iP0nZHW1qeteDcDGwhw2vkRCxW905UHtGA_1HJHjJ-_O1bHzxedvEkeMuTf0gHy6KUMNx8kSutNqWhuj4x6dwzM7gzfpn9LaAr8q-l5WahBAA/s400/523C1E38-AFF7-4EFF-9896-937B09B534CE.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brian had shoulder surgery and Abby is "doctoring" his other arm here, just to make sure he's covered.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We had a family vacation to Kansas City and Lego Land. Levi found the only type of dog he would ever have the chance of getting. :)<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="http://4.bp.blogspot.com/-IAPfB7HuYaw/UH26NquwpfI/AAAAAAAAC68/E9QrqfrFk5M/s1600/photo2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="http://4.bp.blogspot.com/-IAPfB7HuYaw/UH26NquwpfI/AAAAAAAAC68/E9QrqfrFk5M/s640/photo2.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing the cake walk a Jonah's school carnival in August.</td></tr>
</tbody></table>
Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com2tag:blogger.com,1999:blog-5399214731745551972.post-85253413466473791692011-11-28T21:00:00.002-06:002011-11-28T21:09:16.337-06:00Boo!<div>Here are our spooks this year. We went to a Halloween event at the zoo that had a DJ and dancing (among other things), which after about a half hour we had to pull her away. Can you blame her? Cinderella had to live it up at the ball!</div><a href="https://lh4.googleusercontent.com/-Wr7Y0PKJLdk/TtRInHuXQLI/AAAAAAAAC3g/rrvul3ROVnk/s640/October%252520002.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 480px; height: 640px;" src="https://lh4.googleusercontent.com/-Wr7Y0PKJLdk/TtRInHuXQLI/AAAAAAAAC3g/rrvul3ROVnk/s640/October%252520002.JPG" border="0" alt="" /></a><a href="https://lh6.googleusercontent.com/-YIAy-blJkm8/TtRIn_Ca39I/AAAAAAAAC3k/XurMvmuIrqs/s640/October%252520012.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh6.googleusercontent.com/-YIAy-blJkm8/TtRIn_Ca39I/AAAAAAAAC3k/XurMvmuIrqs/s640/October%252520012.JPG" border="0" alt="" /></a><div style="text-align: center;">Then, finally, it was time to Trick or Treat</div><a href="https://lh5.googleusercontent.com/-Q-rTVwtgynM/TtRIprHeQNI/AAAAAAAAC3w/tnygY2Gydt8/s640/IMG_0927.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 480px; height: 640px;" src="https://lh5.googleusercontent.com/-Q-rTVwtgynM/TtRIprHeQNI/AAAAAAAAC3w/tnygY2Gydt8/s640/IMG_0927.JPG" border="0" alt="" /></a><a href="https://lh4.googleusercontent.com/-twCqmcMV0gc/TtRIpGhH1ZI/AAAAAAAAC3s/PO3AIB6DkdQ/s640/IMG_0925.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 480px; height: 640px;" src="https://lh4.googleusercontent.com/-twCqmcMV0gc/TtRIpGhH1ZI/AAAAAAAAC3s/PO3AIB6DkdQ/s640/IMG_0925.JPG" border="0" alt="" /></a><a href="https://lh3.googleusercontent.com/-89uqz52GM5g/TtRIqTvxL5I/AAAAAAAAC30/qj_TRJEPfK4/s640/IMG_0940.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 480px; height: 640px;" src="https://lh3.googleusercontent.com/-89uqz52GM5g/TtRIqTvxL5I/AAAAAAAAC30/qj_TRJEPfK4/s640/IMG_0940.JPG" border="0" alt="" /></a><a href="https://lh4.googleusercontent.com/-NhHiYW_nKu4/TtRIrv9l4nI/AAAAAAAAC38/SINsKY0um-Q/s640/IMG_0942.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 480px; height: 640px;" src="https://lh4.googleusercontent.com/-NhHiYW_nKu4/TtRIrv9l4nI/AAAAAAAAC38/SINsKY0um-Q/s640/IMG_0942.JPG" border="0" alt="" /></a>Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com1tag:blogger.com,1999:blog-5399214731745551972.post-39611921088506667032011-11-28T20:49:00.002-06:002011-11-28T21:00:36.663-06:00San Diego<div>In September, Brian and I had the chance to get away for a SIX days without the kiddos. While we did miss them, it was a wonderful chance for some distraction free marriage-building time. Thanks Papa and Mimi for taking such great care for the kiddos while we were gone. They had a blast!</div><div><br /></div><a href="https://lh4.googleusercontent.com/-Ldwoqxzzu4o/TnvP8vnqyxI/AAAAAAAACyM/8HBTtTlVKE4/s640/Sept%252520040.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh4.googleusercontent.com/-Ldwoqxzzu4o/TnvP8vnqyxI/AAAAAAAACyM/8HBTtTlVKE4/s640/Sept%252520040.JPG" border="0" alt="" /></a><a href="https://lh4.googleusercontent.com/-8tuK4xTWBvA/TnvP946RDnI/AAAAAAAACyU/5B8KGwNu9f4/s640/Sept%252520047.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh4.googleusercontent.com/-8tuK4xTWBvA/TnvP946RDnI/AAAAAAAACyU/5B8KGwNu9f4/s640/Sept%252520047.JPG" border="0" alt="" /></a><a href="https://lh4.googleusercontent.com/-O04jahNWQM4/TnvP_wNtjvI/AAAAAAAACyg/PEIf8-7OEu0/s640/Sept%252520054.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh4.googleusercontent.com/-O04jahNWQM4/TnvP_wNtjvI/AAAAAAAACyg/PEIf8-7OEu0/s640/Sept%252520054.JPG" border="0" alt="" /></a><a href="https://lh3.googleusercontent.com/-WorHj00LcMQ/TnvQCeEyAUI/AAAAAAAACyw/EFDAMA5uPmg/s640/Sept%252520079.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 480px; height: 640px;" src="https://lh3.googleusercontent.com/-WorHj00LcMQ/TnvQCeEyAUI/AAAAAAAACyw/EFDAMA5uPmg/s640/Sept%252520079.JPG" border="0" alt="" /></a><a href="https://lh6.googleusercontent.com/-dB08dT3A-W8/TnvQBRFdDoI/AAAAAAAACyo/DHKhO9BFvOM/s640/Sept%252520073.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh6.googleusercontent.com/-dB08dT3A-W8/TnvQBRFdDoI/AAAAAAAACyo/DHKhO9BFvOM/s640/Sept%252520073.JPG" border="0" alt="" /></a><a href="https://lh6.googleusercontent.com/-4Iwq_mXCGNs/TnvQFkJIspI/AAAAAAAACzI/hXlW7VKFdHw/s640/Sept%252520089.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh6.googleusercontent.com/-4Iwq_mXCGNs/TnvQFkJIspI/AAAAAAAACzI/hXlW7VKFdHw/s640/Sept%252520089.JPG" border="0" alt="" /></a><a href="https://lh5.googleusercontent.com/-A6dWcRu81YA/TnvQOQHU2hI/AAAAAAAACz4/SGw_CyiXnEQ/s640/Sept%252520137.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 480px;" src="https://lh5.googleusercontent.com/-A6dWcRu81YA/TnvQOQHU2hI/AAAAAAAACz4/SGw_CyiXnEQ/s640/Sept%252520137.JPG" border="0" alt="" /></a>Conklin Familyhttp://www.blogger.com/profile/17164116118246686987noreply@blogger.com0