tag:blogger.com,1999:blog-51086418838091575232024-03-05T13:08:01.619-08:00The Extraordinary OrdinaryTheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.comBlogger215125tag:blogger.com,1999:blog-5108641883809157523.post-60157846161168246902017-03-15T15:51:00.005-07:002017-03-15T15:51:57.564-07:00Blog InterruptedMy blog has been down for a few months...something about the payment method I entered several years ago needing to be updated...<br />
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I haven't updated it in so long that I truly don't think anyone would have noticed.<br />
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I almost just let it go until I had a panic attack about losing the journals of experience contained within the blog. Some of the info I think I would actually like to forget, other moments and memories so painful but there is a need to know they are there, documented.<br />
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I don't know why. Maybe its the fear of forgetting. I recently read an article on grief, and it says that one of the hardest things for people is the anxiety they experience due to fearing that they will forget things. It discussed that forgetting is part of the healing process. I don't think I have completely wrapped my head around that idea. I keep circling around it and thinking of it over and over and over. It almost led to me letting this blog disappear and not trying to recover what was also lost within it.<br />
I changed my mind. I worked with Godaddy and google to recover the blog...and now here is it again...nothing lost...it was just sitting in space somewhere, waiting for payment and something called DNS figuration and it is back.<br />
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So what now?<br />
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What I will do with it? I am still not sure. Do I want to blog again? Sometimes. I don't fully understand my reasoning or my desire for people to feel what I feel or to see something from my perspective. Some people state they love my writing and my perspective. Some people think of me or my family as "inspiring", "strong" or "touching". Some people say they learned something from my advice or my perspective. I have also had close friends and family tell me they don't read things I put out there because they don't like my perspective. They feel it distances them from me. This often makes me see this "need" to express myself or state my opinion as a character flaw. I mean, do people really need to know my opinion? Does anyone really care about my parenting experience? Is our "journey" really going to help anyone in the long run.<br />
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Its tough. To go through all we have gone through seems to want to find some good from it and somehow make it mean something. I really don't know that it MEANS anything honestly. Surely what we are experiencing is hell. What we have been through is tragic. But...others have surely faced worse experiences, bigger losses, more pain, more heartbreak....<br />
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This has been a hard week. Chemo cycle 2- although it is actually closer to chemo cycle 16. I go through a ray of emotions on any given day, but mostly this week I have felt anger. Anger at this interrupted life. I am Angry that I have this need to somehow fit a lifetime of experiences into right now. I am angry that I feel like my future feels stolen from me. I am angry that our life isn't just normal (whatever that means). I am angry that I don't feel I can plan. I love to plan. My whole life has been spent planning. Planning my education, planning my wedding, planning my home, planning my kids, planning planning planning...and then the last 5 years swept in and I could no longer plan for anything...all the things I long to plan and desire for my future are sitting there in space waiting for something to happen...<br />
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It keeps me in a constant state of panic. It makes me mad. It makes me sad. I know in my heart that there can be purpose in everything, but sometimes it is as hard of a concept for me to grasp as is the idea that there is healing in forgetting.<br />
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There is really nothing else to say and so what will become of this blog remains as elusive to me as what will become of my life...TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com4tag:blogger.com,1999:blog-5108641883809157523.post-3196062293572852422017-01-06T14:42:00.002-08:002017-01-06T14:42:31.270-08:00Motherhood- my greatest gift<div class="separator" style="clear: both; text-align: center;">
So I haven't blogged in forever and when I mentioned my blog earlier, I decided I should see if it was even still active. so this is basically a test. And maybe if it works I will try blogging again, but I make no promises. Anyway, these are the amazing photos taken by my dear friend Bethany at http://www.meysenburgphotography.com/</div>
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-92230939478454920952016-04-22T13:50:00.000-07:002016-04-22T13:50:16.208-07:00~Better Off For All That We Let In~<div class="separator" style="clear: both; text-align: center;">
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<br />
If you had asked me ten years ago where I hoped I would be today, I would have said that Mickey and I would be living in a college town, we would have four kids and live in a cute neighborhood w a sidewalk where the kids draw chalk drawings and ride bicycles.<br />
He would wake up and drive his VW Karmann Ghia to his job as a professor at the college, and I would work part time. I would wish to wear cargo pants and keens to work and meet Mickey for lunch and coffee dates.<br />
Our children would go to a good school and our evenings would be full of soccer games and track meets, our weekends spent lounging on our porch drinking a cold drink and piddling in our yard.<br />
<br />
~<br />
<br />
On Tuesday morning, after I dropped the kids off at school, I went an visited a friend downtown in her shop. I walked around, wearing Oak until it was time to pick up the littles from pre-school. Then the kids and I met Mickey downtown for lunch in Aggieville. We talked over enchiladas and a cold drink.<br />
<br />
~<br />
<br />
Wednesday evening Mickey drove straight from teaching to meet me at the soccer field. Eliot scored a goal and we cheered from the sidelines while laughing with our friends. We went and got ice cream after the game and she asked us to play Taylor Swift songs on the stereo.<br />
<br />
~<br />
<br />
Last night we all sat out on the deck and ate dinner. Baked salmon and broccoli with garlic bread. Mickey played some Pearl Jam on the stereo and the wind blew gently as we chatted on the deck and watched the kids run around. We talked about the sprinkler system and if I was ever going to get tomatoes planted and how much time track season was going to consume.<br />
After dinner the kids played on the piano and Eliot asked me to sing her some hymns out of a piano book. The girls cleaned their room (without being asked) and the boys fell asleep as soon as their heads hit the pillow.<br />
Mickey and I lay in bed watching Seinfeld and he rubbed my head until I fell asleep.<br />
<br />
~<br />
<br />
That's my life. Its busy and chaotic and wonderful. We have more kids that I imagined we would have, and we drive a VW van (we sold the Ghia years ago), and people sometimes say "Oh, are you the family that drives the big van that looks like it might life off the ground, so cool", to which I reply "yes, my husband thinks it is cool too". haha<br />
We live in Kansas and I'd never even been to Kansas. There is always laundry to be done and transporting kids here and there and everywhere.<br />
<br />
Our life is really all that I ever hoped it would be and more.<br />
<br />
~<br />
EXCEPT<br />
~<br />
<br />
Except this dark cloud looms on the horizon. The thing that I dread most is not far enough in the distance. I always feel pressed for time. I feel like I need to do it all right now because my future is uncertain and it seems like a future that doesn't exist.<br />
We look at our sweet baby boy and we wonder if his hair will be white and curly and unruly like his brother's? We look at the ceiling in our bedroom and talk about what we might do to the room one day....if we have time. We wonder what the kids will be like when they are grown. Will they run track in high school?<br />
All the little thoughts of future that come with raising five children...all of those thoughts come with the pangs of knowing that time is limited.<br />
<br />
~<br />
I wake in the morning and I stare at the ceiling and everything seems good, but then I feel the jab in my heart, reminding me...reminding me that THIS is happening....THIS is real. Cancer has entered our lives and its stealing our hopes and dreams right out from under our noses and we have absolutely no control as to the outcome.<br />
We smile and chit chat and the kids climb into bed with us...and then Mickey sits on the edge of the bed. His body is covered in scars. He lays back down to cuddle a bit longer before going downstairs and making a smoothie to take his four huge chemotherapy pills with.<br />
<br />
~<br />
Life keeps going. With or without you, the Earth keeps spinning and time keeps passing and the sun comes up and the moon rises and each day brings with it joy and pain. Joy that we are here, together. Pain that the future is uncertain. Uncertain for everyone...<br />
<br />
~<br />
So I try to value today. I cry more, but I also try to hug more and laugh more and take it all in. This fragile and beautiful life is worth every second we are given and I try to feel every second of it. Feel it fully.<br />
Better off for all that we let in....<br />
~<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com2tag:blogger.com,1999:blog-5108641883809157523.post-90894589647278810072016-04-22T12:04:00.001-07:002016-04-22T12:04:06.938-07:00My PersonWe were together,<br />
I forget the rest...<br />
~ Walt Whitman<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-14148051520103733202014-09-09T11:11:00.000-07:002014-09-09T11:11:12.603-07:00Oceans<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/-J4jgTzKyk8" width="480"></iframe><br />
<br />
I had an interesting experience Sunday. I visited a new church, not too different from my home church in its beginning phases. The church is located in a gym and full of young adults from the college. Walking in felt a little bit like going home except for the building was a sea of strangers instead of being a crowd of people I have known all my life. The anonymity is both difficult and comforting. The past few years have found me alone more times than I've ever experienced in my lifetime. <br />
<br />
Home has become a more evolving concept for me as I age. No longer necessarily in the embrace of family and lifelong friends...although I often yearn for that kind of comfort.<br />
<br />
The past few years have been a lesson in home being in your heart, and making the world around you home, no matter where you may be and how far from that you may feel.<br />
<br />
New homes are harder. The people don't know you. Its not easy to find people who are willing to jump into an ocean of rocky waves with someone that they don't know and trust. It is much easier to "just be" when you know that the love of those around you never waivers. They love you even at your ugliest. They love you even at your weakest, even when you are frightened or scared or angry. <br />
<br />
As you all know, anger has not been far from me in the past few years. I have held my shield high, angry at the world at times. Angry even at those I love. Angry because I am not home. Angry because I have faced a world of fears in a few short years and angry because its so hard not to have the fond embrace of home to envelop me when all I want to do is collapse in grief. <br />
<br />
So much of the swim is done by wading and doggy paddling and just trying to keep your head above water with fear that if one more wave hits it will surely be the one that takes you to the bottom. Sometimes, you even feel as if people around you are willing you to drown, even tugging at your feet trying to pull you down. This adds to the frustrations and anger and grief.<br />
<br />
The past few years have helped me find a faith and a strength I didn't know I possessed. I don't know yet the meaning of what I have been through or am continuing to go through. I know I am stronger but I do not feel strong. I still feel vulnerable. When people tell me how strong they think I am it is a reminder to me how close I am to drowning. <br />
<br />
When I walked into this church, so familiar yet so new...a song was playing. It is called Oceans. I had never heard it and as I was watching the words of the song on the monitor and listening to the voices around me, all I could do was cry. The tears streamed down my face as I sat surrounded by strangers...I know God is the only force truly keeping me above the waves, and I felt like He was asking me to let go. I felt like He was asking me to hand over the pain and to quit fighting the waves and roll on my back and float for a while. <br />
<br />
The hard part was that I felt myself fighting it. I hold the pain like armour. If I let it go, will I forget. I don't want to forget because it has become a part of me. Is it possible to surrender the pain and still have the knowledge? How can I stop trying to control it all? I might fail? How am I still in this place? Haven't I learned by now that I have no control of the outcome of things, and that sometimes, you just have to trust? That ultimately, it has nothing to do with me and what I do or don't do and that my plans and what I desperately seek are so small in this big big world. <br />
<br />
Letting go is difficult. Just "being" is difficult. It should be the easiest thing to do, and it is definitely the most freeing. I know it will set me free. I know that without my clinched fists hanging on for dear life, that it will still be ok. There is beauty in the drifting. <br />
<br />
I do know that it seems that no matter where I go, I am found. He finds me. No matter how small I feel, He sees me. No matter how far from home I am, I am Home. <br />
<br />
<br />
<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-42501540129278698532014-02-08T21:11:00.000-08:002014-02-08T21:11:07.091-08:00My Many Flipagram VideosI made a flipagram video with the new flipagram app that I found quite fun and kept me busy during the long days in the hospital.<br />
Enjoy.<br />
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This one is for Oliver (he's the oldest and way too many pics and I didn't time the music right, lol. Ill make it again one day I guess).<br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/aoruW3PxWO8" width="420"></iframe></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>This one is for Eliot</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/98E3LZBhbJI" width="420"></iframe></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>This one for Emily</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/zJ9Me3JKo3Y" width="420"></iframe></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>Our flipagram for Auguste and for hydrops awareness and hope</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/Ybi5eK05Bjg" width="420"></iframe></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>The video I made of me and the fam</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/GZtSsC6bMJw" width="420"></iframe></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>and my personal favorite, the video I made Mickey the day of his surgery.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/fAMl3zYShAY" width="420"></iframe></i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>I am sure I will be making more of these. Stay tuned and hopefully I won't drive you crazy. lol.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-43389664428745094342014-02-05T17:37:00.000-08:002014-02-05T17:37:21.907-08:00Noah the Salty Dog- found tis in drafts...never published. rip Noahbear<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7wh5Xx2WL4Ygv0xWSSRluU5jprPcGrT_GCiwdBoqI1pJtrd0fq4hKhkJhaFP7naB3m8YiLZUdEGVtmdR8Ph1zdXdgB_o_g1xKQ1OJaIaM_piLeSqUvmGNGIotm5OXYzSMjyNk5vIjSd4/s1600/n523736770_1927991_3540.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7wh5Xx2WL4Ygv0xWSSRluU5jprPcGrT_GCiwdBoqI1pJtrd0fq4hKhkJhaFP7naB3m8YiLZUdEGVtmdR8Ph1zdXdgB_o_g1xKQ1OJaIaM_piLeSqUvmGNGIotm5OXYzSMjyNk5vIjSd4/s320/n523736770_1927991_3540.jpg" id="BLOGGER_PHOTO_ID_5562915143370391522" style="cursor: hand; cursor: pointer; display: block; height: 234px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
Jasper's Noah Bear is my dog. That is his formal name....because his "dad" or "sire" was Jasper, his name was Noah and Bear...well, he used to be like a cuddly teddy bear and now he is a big ole polar bear. <br />
Noah is also called the Salty dog...because once upon a time he spent many days in the ocean.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis_b2vC1I8Kk9hIo0smBBMPzqo1kG3u3Y0VYUme0WCHXr0_hm-NZ5qjbM2D_Q4mNIUW2gjIn2OE_pI3rPxxcsJqgtFZNp4vcxU-NX-Aeaz25-ybko_D5N2qh1JITUv7VRy-5KPPLqBauY/s1600/l_e3030d79ebde9c5b89d33fcb95ed548a.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis_b2vC1I8Kk9hIo0smBBMPzqo1kG3u3Y0VYUme0WCHXr0_hm-NZ5qjbM2D_Q4mNIUW2gjIn2OE_pI3rPxxcsJqgtFZNp4vcxU-NX-Aeaz25-ybko_D5N2qh1JITUv7VRy-5KPPLqBauY/s320/l_e3030d79ebde9c5b89d33fcb95ed548a.jpg" id="BLOGGER_PHOTO_ID_5562915430183118770" style="cursor: hand; cursor: pointer; display: block; height: 241px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJh77noxlD45Vqhgz3R4tpS0MH1XGhBJ2NaKQbGaSDiUXgrhmNSZACJG7DGMA2hhgE-IUl6CCmEyH5bI2YzXv0gkYcgeG_F1Ab-JAJYvWO1parXsxR_uUdOlFxqHXiPqdfqyYo7z5130k/s1600/l_197db5088964609a11b68ff2bb3b9cfc.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJh77noxlD45Vqhgz3R4tpS0MH1XGhBJ2NaKQbGaSDiUXgrhmNSZACJG7DGMA2hhgE-IUl6CCmEyH5bI2YzXv0gkYcgeG_F1Ab-JAJYvWO1parXsxR_uUdOlFxqHXiPqdfqyYo7z5130k/s320/l_197db5088964609a11b68ff2bb3b9cfc.jpg" id="BLOGGER_PHOTO_ID_5562915292535719058" style="cursor: hand; cursor: pointer; display: block; height: 242px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
I got Noah as a college graduation gift from my parents. The Summer of 2000. He was 12 pounds when I brought him home. There were two yellow labs in his litter, and I just chose the one with the black nose. We have had some great times...me and that dog. They mostly involve the beach and road trips.<br />
I remember a time when the two of us would take off for drives to the beach in my pickup. He would always sit right next to me. Even though there was an entire seat beside him, he would lean into me and drool on my steering wheel. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Iowl0RcBidYJ0O61q1vPAOGGcBFlQtcJ0stSOUTx2gylO62EfJYWIaiUO7H7eEO2DJc2k_JtTYHAZbo65167P-HTq1o_zKkGdSuDePLmmNT5RMhpU2QTPpZX42s59l1DCqYceB6tUtU/s1600/BG6.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Iowl0RcBidYJ0O61q1vPAOGGcBFlQtcJ0stSOUTx2gylO62EfJYWIaiUO7H7eEO2DJc2k_JtTYHAZbo65167P-HTq1o_zKkGdSuDePLmmNT5RMhpU2QTPpZX42s59l1DCqYceB6tUtU/s320/BG6.jpg" id="BLOGGER_PHOTO_ID_5562915688425150130" style="cursor: hand; cursor: pointer; display: block; height: 320px; margin: 0px auto 10px; text-align: center; width: 242px;" /></a><br />
He has always been a funny dog. If I had a date, he knew to position himself right in between us. He actually WAS my first date with my husband. Our first date was to walk the dog to a nearby park. He witnessed our first kiss. I have memories of him as an excited puppy who ran into glass doors, as the dog who would swim out into the ocean in order to follow Daddy while windsurfing, so far out in the ocean that I had to start putting a life jacket on him because he didn't know when to stop. I can remember sitting on the docks with him to watch sunsets...he would bark at the birds, I would read a book. One time that crazy dog actually leaped off the dock to try to catch one of those birds....I had to help him navigate his way to the boat ramps in order to get our of the water. <br />
He saved my life once. Maybe more.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXL-9YjvQggShz-JwY4RnnyrurQdUKptBpx77Ww2mG3zFh2SwbfJcWJ3Xxjf2Htm07UhbYYA6GgREp_uud_nhmFiPD-RpzYn51MCVGa1LlaL7SsUFs5kndjfYCflp-AsMw4VpxmLKvmfI/s1600/BG.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXL-9YjvQggShz-JwY4RnnyrurQdUKptBpx77Ww2mG3zFh2SwbfJcWJ3Xxjf2Htm07UhbYYA6GgREp_uud_nhmFiPD-RpzYn51MCVGa1LlaL7SsUFs5kndjfYCflp-AsMw4VpxmLKvmfI/s320/BG.jpg" id="BLOGGER_PHOTO_ID_5562915866621385138" style="cursor: hand; cursor: pointer; display: block; height: 240px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
He is nearly eleven years old now. He has aged a lot in the past two years...arthritic and fat. <br />
He snores and farts and groans throughout the night. Sometimes I have to go help him up off the floor because he is in too much pain to move. If our walks are too far, he literally won't be able to walk for a few days until he recovers. He is an old man. 77 in dog years. (is that right? 7/1?)<br />
I am not sure how many months or years we have left. Sometimes I get teary just thinking about the fact that we will have to say good-bye soon.<br />
I was 23 when we became a family. I was just a girl. Fresh out of college. Ready to fall in love, save the world and learn all the secrets to life. He has truthfully been with me throughout all of my adult years. He is witness to all my rites of passage.<br />
He has lived with me in 6 different homes, he has seen me graduate college 3 times. He has seen me date, marry, have children. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3u1Spvq-Z5Rqua_oNZx8D9eIzYLutH7K6dPTd6uLKFXAs50dDyoabrvhGQk88GbJgQFWJ-VsL6lnZ00-Ed0AaNEK4g8sOeAaK7AYijWRhHRNZ6zro6bnMso24szfT5tzgZPwTSvAgQRc/s1600/BG4.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3u1Spvq-Z5Rqua_oNZx8D9eIzYLutH7K6dPTd6uLKFXAs50dDyoabrvhGQk88GbJgQFWJ-VsL6lnZ00-Ed0AaNEK4g8sOeAaK7AYijWRhHRNZ6zro6bnMso24szfT5tzgZPwTSvAgQRc/s320/BG4.jpg" id="BLOGGER_PHOTO_ID_5562916129625556642" style="cursor: hand; cursor: pointer; display: block; height: 242px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
Once the top dog in my life...slowly replaced with husband and children. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJki4NW3a0e4yx_Ibfe-4RTr2dN8JcA0mOLgTj9qlgP7BnS2jEzt2NtS8KQrNYGkfId74yeQ8CMMfvcfqTtdH6iwpI7mYIQCr0KF6Tg3rGRPBlQao9wGaeXJl-JasjNY7NJqHBdNx7tT8/s1600/l_e5c37faa7a7604ffb92cea67803d0664.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJki4NW3a0e4yx_Ibfe-4RTr2dN8JcA0mOLgTj9qlgP7BnS2jEzt2NtS8KQrNYGkfId74yeQ8CMMfvcfqTtdH6iwpI7mYIQCr0KF6Tg3rGRPBlQao9wGaeXJl-JasjNY7NJqHBdNx7tT8/s320/l_e5c37faa7a7604ffb92cea67803d0664.jpg" id="BLOGGER_PHOTO_ID_5562916270318664770" style="cursor: hand; cursor: pointer; display: block; height: 240px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br />
He can no longer follow me from room to room as he did for nine years, but he is still acutely aware of where I am at all times. If I cry, he is there. if I am angry, he is there. If I am happy, he is there.<br />
In the busyness of the daily grind, I have found myself unaware of his presence, or annoyed by it. Daddy said to me recently "Mama, Noah has been following you around for ten minutes and you have yet to say anything to him". Oh the guilt. <br />
As I was watching him sleep earlier today, I decided to write this blog. I decided I would dig out some old photos of our earlier years and dedicate an entire blog to my best friend Noah.<br />
This dog, a witness to my youth. A witness to my ups and downs, my best moments and my worst...Always happy to see me...Hopelessly devoted to me. The one being who has watched as I learned to experience this life. <br />
He won't be around for another decade. In a short while he will pass on to doggy heaven and my kids will probably only know him because of the painting that hangs over the mantle (and at the title of this blog). But that doesn't change the fact that he has been an integral part of my life. <br />
Thank you buddy. You are a good dog!TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-53968692025828444772014-02-05T14:59:00.001-08:002014-02-05T16:08:23.996-08:00Update All Things LosinskiHello friends. I know its been a bit since I blogged (I start so many of these things with that very sentence). What can I say? I am busy.<br />
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I would love to start by saying thank you to all of the people who have reached out to us recently, whether bringing food, prayer, friendship and support. The outpouring of love our direction has reminded us of how very blessed we are. <br />
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With so many things going on of late, I thought I would give a brief update on us all.<br />
<br />
Mickey- Mickey has recently returned to work after having nearly half of his rectum removed. It was a huge surgery that took over four hours, a robot, several physicians, and 7 incisions to complete. He rocked it out, even getting up to walk that very evening. He was discharged much earlier than anticipated and has amazed us all with his recovery (the mind can be a powerful thing). He did have a brief set back that landed him a weekend in a local hospital, but he also recovered quickly from an infection we never identified.<br />
His final staging was T3N2M0. This means that his tumor was large enough to be considered a T3 (they range T1-T4). He had 5/16 nodes found to be positive for cancer, thus staging his an N2. And we have not found any distant metastasis, so therefore he is an M0. This is not the staging we hoped for. The numbers would say that with surgery alone he has a 50% chance of being alive in 5 years and with chemotherapy after surgery he has a 70% chance of being alive in 5 years. About 85% of recurrences happen within the first 3 years, thus meaning that after 3 years, the chance of it coming back drops down to 5% (which is much better news). The prognosis is much graver than we had hoped, but we all know that numbers are just numbers, and are believing for the best possible outcome. Our family has had the odds in our favor before, right?<br />
Mickey goes back to surgery on Friday this week to have a port placement (a permanent access line placed in his chest), and will start chemo within the next two weeks. It is a 3 day chemo, so he will wear a pump (in a fanny pack) for 3 days every 2 weeks. We will do this every two weeks for 12 cycles (or 6 months). I know he will do awesome with this. We are considering a clinical trial, The research is changing standards of care and we are excited about being a part of that. <br />
He plans to work as much as he can throughout all of this and I know he will do well. The chemo makes you extremely sensitive to cold (and we are living in Kansas, where we were given 11 inches of snow last night). Knowing this to be the case, he took his last opportunity to go sledding with Boy and Bluebird this afternoon. <br />
I know the chemo will tire him, and am anticipating a tiring 6 months for us all. Right now it is still new, and I don't think either of goes even 5 minutes without thinking about the worst case scenario. Many tears have been shed, primarily because we love our children so much and don't want to even consider them losing a parent. I do believe that once we get through this initial grief, that life will start feeling normal again and we will likely only think these thoughts with every 3 month office visit that comes after chemo is complete.<br />
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Me- I am still working two jobs. I try to take call for the Greenville Cancer Center every weekend. It helps me not only stay involved with my patients and co-workers, but also provides extra income that we are much in need of. The doctors there have been so helpful in asking about Mickey and helping me to identify clinical trials that he can be a part of, etc. I also joined the local hospital in October, and I am helping to develop a wound care program there. I have always enjoyed wound care and it is very satisfying. I have been fortunate to be a part of healing wounds that people have had for a very long time. I am learning so much and although many aspects of this job are new ventures for me, I know that I am developing valuable tools that will help me lifelong in my career.<br />
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Boy- Boy is in first grade and is doing wonderfully in school. He is starting to develop friendships with really sweet kids and it is fun to watch those develop. I am still friends with girls I met at his age, so this makes me smile. He simply amazes me at how well he reads and does math. I think it is fun when my child starts coming home and teaching me new things. He absolutely fascinates us. <br />
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Bluebird- Bluebird is in K4 (she missed deadline for kindergarten by 10 days). She is at a school that is all inclusive and she has children with autism and down syndrome and other special needs in her classroom. I am so proud of her every day because she is so caring and kind to her peers. Her teachers always tell me how helpful she is. She is so sensitive to the needs of others. I know this is a gift. AND She still has the best laugh in Kansas and all around. <br />
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Buttercup- ahh Buttercup. What can I say? She wears a bathing suit with boots and gloves no matter how cold it is. She likes to watch "Say Yes to the Dress" and she knows all the frozen songs by heart. She still hates the idea of giving up her binky and we usually find her up playing under her bed with a flashlight well after bedtime. <br />
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Auggie (I feel like I had a nickname for him, I even thought it started with a "B", but I must have forgotten it, ha). Auggie will be a year old next week. He started walking, but still crawls for the distances. He LOVES to eat. He eats all the time and I have not found anything he doesn't seem to enjoy eating. He is like a little bird, always opening up for more. He is huge and wears 2T clothing (weighs more than Emily) and barrels around the house getting into anything and everything. Like his brother, he loves the Wiggles. He has white hair that sticks straight up on top of his head. He smiles and laughs all the time. He is the coziest snuggler ever. <br />
We are seen tomorrow in Kansas City with genetics (we go to KC often to see vascular docs and pulmonary). We have been waiting for this appointment for many months now. I am unsure if they will be able to provide us with any insight to why he had hydrops or why he has a lymphatic malformation, but we still feel it is important to cover all of the bases so that as future research and information arises, we can continue to make sure he has the best care possible. We are told that lymphedema is "heavy" or "achy". He doesn't like us to squeeze that hand (when walking with him), but he certainly has not let it stop him. We know a past xray showed small pleural effusions (fluid on lungs) vs lung scarring. He has a cough at times but really, if you met him, you would be amazed he was ever so sick. He is such a healthy happy baby boy, and has the most kissable cheeks in the world. We are celebrating his birthday on Valentines day with lots of hearts and love!<br />
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Fozzie- This dog is taller and heavier than we ever imagined he would be. He is silly looking and acts even sillier. He loves the snow and dashes out to jump and roll in it. He comes inside with snow dreads and a smile. Yes, if dogs smile, this is a smile. He has a nose as long as a mule and a tongue that is twice as long. He thinks he weighs 10 lbs and sits in our lap, lays his head on a pillow and I've never known a dog until now who has to think about whether or not he is in the mood for steak. <br />
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With so many hospital days recently, I became obsessed with two iphone apps. Flipagram and waterlogue. I made a video for each kid, Auggie's is also a tribute to hyrops survival, a video about my parenthood, and one about Mickey (that I posted in a previous thread), I will try to post those soon but having "technical difficulties". I am also posting a few of our recent photos that I waterlogued. ha<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com2tag:blogger.com,1999:blog-5108641883809157523.post-71227974330922847122014-01-19T06:11:00.001-08:002014-01-19T06:47:34.921-08:00BalanceI've been thinking a lot lately about balance.<br />
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Balancing family and work and faith and media and finance and health and......<br />
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I recently purchased the new issue of Real Simple magazine and the entire issue was about balance. So many stories and tips and during this hospitalization I have delved into it getting ideas that are practical for my life.<br />
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However, the one editorial that has stuck with me most out of the entire issue said this (and I wish I could quote the entire thing but it isn't in front of me):<br />
it said that the fact that we were looking for balance should be seen as a luxury in itself. It probably meant we were not working two or more jobs. It said that it was a class phenomenon that we thought we deserved to be happy, rather than just clothed and fed.<br />
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This humbled me. She is exactly right. We are not promised that life would or even should be happy and easy and equal. In fact, if anything, we are promised the opposite. I am not saying that we should not strive for happy. I believe wholeheartedly that we should strive for balance and equality and overall happiness. Perhaps it would be easier to be satisfied with life if we all kept this in mind as we continue to search for balance in the chaotic reality in which we live.<br />
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The issue did what it set out to do....it helped me find a bit of perspective and a bit of balance. I am feeling more than just a little blessed this morning. In fact, there isn't balance or moderation in how blessed I feel....My cup runneth over.<br />
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I made this little video while Mickey slept and I was sleepless last night. Truly we have no balance when it comes to love...<br />
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<iframe allowfullscreen="" frameborder="0" height="344" src="//www.youtube.com/embed/fAMl3zYShAY" width="459"></iframe>TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-15148927380833735062014-01-16T12:02:00.001-08:002014-01-16T12:11:13.878-08:00Have I Loved You Well?I am sitting in the waiting room right now as my beloved lies open a table getting a pretty big surgery today. I have been anticipating this day since we learned of his cancer. I just wanted to get this thing out and get the final staging and make a plan for the future.<br />
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The surgery itself has never worried me. if anything, I have been mostly consumed with what I cannot control, which is "what if it comes back in three years?"<br />
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I learned last weekend that Mickey's mind has been mostly concerned with this surgery. What if something happens on the table? Etc. These thoughts are not unwarranted fears as I have had a cousin and uncle who went in for very routine elective procedures and had significant complications that nearly took their lives. Mickey has been nervous about this surgery getting complicated.<br />
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Really, I should not be surprised by the differences in where our worries lay, because Mickey tends to stay in the here and now while my mind is usually looking way far ahead.<br />
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The past month has been stressful. This cancer diagnosis has come as a big blow to us. There are already so many unknowns regarding our future and it's hard for me to feel so much confusion about what is the right thing for our lives and where is the right place etc. It's hard being so far from family through cancer and hydrops. There are many days that I have felt very alone and have thought of all the what ifs and truly not known what is the best thing for us to do in all of those different circumstances.<br />
When we discussed Mickey's fears, I suddenly started thinking about those things too and I also temporarily got concerned about the surgery and something going wrong.<br />
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I started feeling even more emotional and wondering about all the things I could have done differently. Had I loved him well enough? Did he feel a full life with me? Had he done all he wanted to do? Was he satisfied with life with me and the kids?<br />
I didn't know the best way to talk about these things with him without coming across as negative, but Monday night I decided it was a conversation that we needed to have.<br />
I asked him those very questions. I know that in our [almost] eight years of marriage! we have seen and done and gone through more than many people do in a lifetime.....and with that comes a great deal of stress. I got my masters degree, he got his PhD, we have lived in three states and had four children and battled prematurity with one child and hydrops with another. I have felt like maybe all of this was more than Mickey ever expected would come his way when choosing to marry me. What if he had regrets? What if he felt unloved by me? Had I loved him well?<br />
Mickey's answers were that he thinks he has a super cool life with four beautiful kids and a smart wife and he feels he has truly lived and loved more than he ever had expectations for in life. This of course, is what I needed to hear. It gives me peace now, as I wait in the waiting room. I just know things will be ok.<br />
It also reminded me that I need to start living my life with the focus of loving my family well. Being present. Being kind. Being gentle. Listening. Nurturing. Loving.<br />
Can eBe present. Don't always live three years ahead of yourself...be present in today and make these moments count because the future is not guaranteed.<br />
I write and tell you this today because not all are facing cancer, but we all face death at some point or another. It is imminent. It is the only sure thing that does await us all. I implore you not to wait until you have a face off with a life threatening illness to ask these questions. Don't wait because a time might come when it is too late.<br />
Talk to your loved ones. Ask them how you can show them more love. Tell them you love them. Tell them how they have made a difference in your life. And spend time loving them well.<br />
<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com2tag:blogger.com,1999:blog-5108641883809157523.post-18855274119286658842013-12-18T16:43:00.002-08:002013-12-18T17:02:58.196-08:00Do the Work<div class="separator" style="clear: both; text-align: center;">
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This is my husband. He is beautiful. I remember the first time I met him being awed by his deep focused eyes. Since that time he continues to awe me on a regular basis. His focus. His discipline. His sheer talent in almost everything. His love for our children. His love for me.<br />
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He is the face of many things. He is the face of Daddy to my children. He is the face of Dr. L to his college students. He is the face of Mr. L the art teacher. He is the face of Coach L, the track coach. He is the face of a loving son. He is the face of a faithful friend. He is the face of a baby brother. He is the face of my husband and he is one of the many faces of cancer.<br />
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Mickey was recently diagnosed with colorectal cancer. It is a shock. It seems unfair. It seems we have had our share of stress. It hits us on the heels of hydrops and frankly, we thought life was finally settling down. Mickey recently finished his Phd, moved us to Kansas and we thought life was about to become boring, predictable and perfect. We are still processing this news with an array of different emotions. Mickey hasn't missed a beat and is doing as he always does, moving forward and solving the problem as best as he can without fretting over the stuff he can't fix.<br />
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Technical stuff:<br />
It is not metastatic. He will have surgery to remove tumor on January 16 in Witchita by Dr. Noel Sanchez. He will have up to a week in the hospital and then 6-8 weeks recovery. The doctor was clear that this is no easy surgery and he should expect a hard road. After recovery from surgery, he will go on for approximately 6 months of chemotherapy (which he will get in Manhattan) He will get chemotherapy every 2 weeks for 3 days at a time. We meet with oncologist (Dr. Travis Koeneke) tomorrow. The treatments will be with curative intent.<br />
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We have a long road ahead but we are trying to view this new journey as an opportunity for growth. I frankly cannot see any way to have cancer and not become a better person because of it. I plan to let this new venture help me become a better spouse and partner. We are trying to see all the blessings that exist within this type of diagnosis. Although the lessons are hard, they are valuable and life changing.<br />
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As usual, Mickey prefers not to talk about all of this stuff with many people, so if you have questions or comments or advice, please feel free to email or text or message or call me. I will try to keep the blog updated with latest information to keep our friends and family informed. We are thankful for the outpouring of love and support that you all offer us so often. Please please keep us in your prayers and thoughts as we move through this challenge.<br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">...be strong and courageous. Do the work. Do not be afraid or discouraged , for The Lord God, MY God, is w you. He will not fail or forsake you....1 Chronicles 28:20. </span><br />
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I love this verse because of two parts. I love that it says 'Do the Work'. and I love that it says 'My God". My dear friend reminded me that you have to put legs to your prayers. We must DO THE WORK. Its often hard work. The road ahead will be Hard work. It will be hard work for all of us but especially for Mickey. I have no doubts and I have complete confidence in his ability to Do the Work. I also have no doubts and I have complete faith that the Lord, MY GOD, will not fail us.TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com2tag:blogger.com,1999:blog-5108641883809157523.post-83212999075820793572013-09-26T19:00:00.000-07:002013-09-26T19:00:04.424-07:00Circle it and Cross it Out<div class="separator" style="clear: both; text-align: center;">
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This Boy! He is truly amazing. The other day at dinner, he saw a Longhorn skull on the wall and said "so...is this a Georgia O'Keefe?" <br />
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He says funny things like "Count Me In!" when we ask if he wants a milkshake and "of course I did", when asked if he did a chore, or "Bingo!" when we answer one of his questions correctly.<br />
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He is so smart and has an excellent memory and he constantly amazes us. His little mind is always going and sometimes I have to tell him to relax and calm his mind. I get exhausted sometimes thinking about all that is going on in his head.<br />
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He does get nervous and he has chewed his little nails since he was two years old. I actually got out of the habit of even paying attention to whether or not he needed his nails trimmed. The other morning I was holding his hand and I noticed that his nails were actually quite long.<br />
I said "When did you stop biting your nails?"<br />
Boy: "I quit when I crossed it out..."...he went on to talk about other things and I reeled him back in.<br />
Me: "what do you mean 'crossed it out'?"<br />
Now this is where it gets amazing...<br />
Boy: "I just decided I didn't want to do it anymore, so I drew a picture of it, I circled it and then I crossed it out. Then I stopped doing it."<br />
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Maybe its because he is mine...but I find this to be a fairly grown up way of dealing with things and a pretty interesting concept for a 6 year old child. Well, maybe not so grown up, because very few grown ups could actually stop doing whatever it was they crossed out.<br />
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I think it is incredible that he made this decision to stop nail biting all by himself, and took it upon himself to figure out a way to deal with it without ever mentioning it to us.<br />
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He is one insightful kid and I think we could all learn something from his simple concept. So...many months ago by girlfriend taught me to look at what I wanted and circle it. So, I mentally have circled a Christmas card photo for 2013 with Auggie in it since last year. NOW, I have a new way to mentally deal with things I no longer want in my life. Picture it, circle it and then Cross it out.<br />
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So, in the wise words of my 6 year old: "Just cross it out"<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-69915011893439436162013-09-26T17:21:00.004-07:002013-09-26T17:22:46.985-07:00Here Comes the Dawn<div class="separator" style="clear: both; text-align: center;">
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So...the dreaded day approached. I had yet another sleepless night as I tried not to think about last year and focus only on the amazing little boy in front of us. We had to wake early and load the kids in the car for the early appointment in Kansas City...and as we drove, this beautiful site was ahead of us. I truly was in awe of the amazing sun rising. The song, "here comes the sun..." played in my mind and everything just seemed peaceful. It was just another revelation of the blessings and miracles that are new every morning.<br />
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Our pulmonology appointment was less eventful than I hoped. They were actually very impressed with our thriving Auggie. Of course, Auggie didn't cough during the visit. But Dr. Escobar did decide to order a chest x-ray. He talked extensively about lymphangectasia and other lymphatic issues that effect the lungs. He said these diagnosis have a wide spectrum of presentations and many remain asymptomatic throughout life. We may go on for CT in a few weeks when we visit again. We also have an appt with a vascular lymphatic doctor on Oct. 7. On one hand, this is a lot of back and forth to Kansas City ahead of us...on the other hand, its a lot closer than Philadelphia was to us during pregnancy, and the outlook is much more positive. So I welcome it. Overall, I feel like no matter what challenges we may have ahead, that every little thing is gonna be alright. So I won't worry. God's Got This!<br />
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Since we had to bring the whole family with us, we made a nice day trip of Kansas City. We went to SeaLife and Legoland and ate at a place called Fritz's where a train delivers your food to the table. The kids had a grand time and can't wait to visit again.<br />
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When the day was done, we picked up our Grandma Mille who came from Oregon for a visit. We are so blessed to have her with us this week.<br />
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<tr><td class="tr-caption" style="text-align: center;">Grandma Mille and Emily ride the train at the city park in downtown Wamego</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Fritz's Restaurant (turn your head sideways)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sea Life </td></tr>
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-29615383539450089312013-09-24T12:18:00.000-07:002013-09-24T12:18:07.218-07:00Anniversary<div class="separator" style="clear: both; text-align: center;">
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Tomorrow marks the one year anniversary of the worst day of my life. It was the day we sat in silence as doctors studied our son. It was the day that doctors told us our son would not survive. It was the day we were told that the standard of care for his condition was termination, and that would end his suffering and avoid prolonging ours. It was the first time I had ever heard of non-immune hydrops. It was the beginning of many months of sleepless nights and travel and doctors visits and ultrasounds and searching the internet for hope and praying and begging and pleading and........ This day marked the end of joy in my pregnancy. It took away all of my innocence that pregnancy was this beautiful thing that could be trusted. It took away my innocence that losing a child only happens to other people. It took away the notion that I truly had any control over my life.<br />
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I've been dreading this day. Not only because of all of that, but also because it is the same day we drive to Kansas City to take that same sweet baby boy, the boy who lived, to the pulomonogist. We still know little about the chyle leak that caused his hydrops, or the lymphatic malformation that causes his residual lymphedema. We know he is healthy and meeting all of his milestones. His arm does not seem to hold him back or cause him discomfort. But he does has a very odd cough that occurs frequently and does not seem to be related to any illness. He coughs when he laughs. He coughs when he cries. He coughs when he gets frustrated. Sometimes I think he is fine and this is just the result of having sick lungs in utero. Other time I feel my chest tighten and wonder if I am being naive and that we have many more mountains ahead of us. So...its time to get checked out and find out.<br />
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On one hand, maybe this office visit being on this anniversary is a good thing. Certainly we have been blessed with this little man who is affectionately called a "Little Wave" in my support group, due to overcoming an ocean of odds to be with us. This visit does remind us of how far we have come this year. On the other hand, I am scared, nervous and anxious. If you can say a prayer for us, it would be appreciated.TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-51504774559082441602013-08-14T12:43:00.001-07:002013-08-14T13:06:34.916-07:00Great Things Happen ALL At OnceMany people choose to make major life changes one day at a time...I have somehow accidentally made a lifetime of major life changes, ALL at ONCE!<br />
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We have so many changes, all for the most part Good changes, but all happening at once and pushing and stretching me further than I have ever been pushed or stretched. Its hit and miss on how I am handling it all.<br />
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ON our recent move to Kansas, with all of our belongings in a 20 ft U Haul and on top of our cars, there was a moment about 3 hours from our final destination when I seriously felt that I could not go another inch. I just wanted to pull over to the side of the road and stay there forever.<br />
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Have you ever felt that way in life?<br />
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I did at this point.<br />
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It wasn't just the driving and the absolute exhaustion from 3 days of travel with four children, a dog and a cat and a flat tire which left us at a truck stop for 5 hours, and the absurdity of having a dog crate tied to the top of my mini van, filled with items, as well as a slide and a tire swing and a red wagon....following my husband who was driving a U Haul towing the Volvo which had all the kids bikes and our bar stools strapped to the top....<br />
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It was more than that.<br />
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It was leaving behind a great job w great co-workers and fabulous patients...a job that you felt you were really doing something valuable, and headed towards the unknown.<br />
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It was about moving very far from all of my family and friends...further than a day trip and further than a weekend trip and further than a mini vacation...I would no longer be "on the way" to anything...I would truly have moved days away from all of my people.<br />
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It was being frightened about what financial burdens might await w/ the high cost of living that comes with this particular college town. Its actually quite shocking.<br />
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It was having to leave behind more than half of my furniture and belongings. I border on hoarding tendencies. I certainly knew a day lay ahead when I sincerely wanted to pare things down and live more simply, but this wasn't exactly the time I had in mind. Especially without being able to immediately replace many of the items.<br />
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It was moving to a house I had never seen. One much smaller and older than our previous home, where the unknown awaited us.<br />
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It was having to find schools, and doctors, and dentists and therapists and a church and friends and a job and a couch and a bedroom suite and a lawn mower and a babysitter and childcare and and and and and.....<br />
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I just wanted to pull over and sit on the side of the road and cry, forever....<br />
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But, obviously, though that almost seemed rational, it isn't. Even if I had pulled over...I still had 3 hours to go. And after that, I still had to keep moving forward. Life doesn't stop because I feel overwhelmed or tired...the kids still need to be fed and the house still needs to be cleaned and the bills still need to be paid....so I just keep swimming, just keep swimming, just keep swimming.<br />
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I decided today that it had been too long since I blogged, and that I feel this new journey is worth blogging about. Because i'ts about changing. It's about figuring out how to reach your goals and really defining which goals are actually the important ones. I don't know the answers and I don't know where I will end up in this journey...and I know I'll go through many life lessons along the way...but I know, no matter what, I will be better because of it all.<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-21703227089598479362013-05-22T17:36:00.000-07:002013-05-22T17:36:22.465-07:00Florida, Birthday, Lymphedema, Graduation, and ManhattanHello friends. I know I am getting slack on posting, but things have been a little busy these days. Laughing out loud at just how busy busy is. In March, we traveled to Florida for the kids Spring Break and had a great time visiting with family and friends. While we were there we had the opportunity to dedicate our sweet Auggie. We wanted family to be involved and on Easter Sunday we went to my Uncle Joel's church and had him dedicated by my Grandmother's baby brother, my Uncle David. Many family members were present including two of my Great Aunts, 4 of my Dad's brothers and their wives, both of my parents, my sister and her family. In attendance also was one of the many prayer groups that prayed for Auggie during our battle with hydrops. It was very special.<br />
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Upon returning back to Greenville, we celebrated Oliver's 6th birthday with The Critter Keeper. Our house was full of 17 children who all laughed and squealed as the Critter Keeper put on a show to remember with live snakes, giant roaches, all sorts of lizards and spiders. We had a great time.<br />
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Shortly after that I returned to work full time and Mickey treked around the States on interviews. He successfully defended his dissertation and officially became Dr. L. He accepted a position at Kansas State University as assistant professor of Special education. This is a very big deal for our family and at the end of July we will plan to cross the Mississippi and relocate our little/big family to Manhattan!!!! Manhattan, Kansas!!!!<br />
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Oliver graduated kindergarten last night and we had a wonderful but bittersweet time as we said goodbye to our Shannon Forest family. Our kids have been attending SFCS since Oliver was in K3 and we have made many wonderful friends. Oliver made us laugh out loud as he leaned on the railing during the songs, doing the motions, but in a very laid back, too cool for school manner. When they called his name he threw his head back and walked very purposefully across the stage to get his diploma, almost as if saying "Okay Okay, I'm coming".<br />
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Auggie is 3 1/2 months old now. Can you believe it??? Time truly flies when you are having fun. We went to our first physical therapy appointment today and I learned a lot but know there is still a lot to learn. The lymphedema was originally in only his left hand, but now extends to his shoulder and across his chest. She even felt his face is somewhat assymetric. I felt this way when he was a newborn, and no one else really agreed, so at least now someone noticed it as well. If we stay on top of things he should have no complications, although unfortunately, everyone continues to tell us to watch for shortness of breath indicating pleural effusions as well as continuing to watch for abdominal ascites. This is hard to hear because I want to put all of that behind us and not continually have that concern. It was neat learning how to massage his arm and chest and back to help facilitate lymphatic drainage. She fitted him with a very smock, mock sleeve, to get him used to wearing something on his arm...which he will need to get used to. She taught me about the precautions necessary and frankly, they are scary. Basically, he cannot have any puncture, bug bites, burns, sunburns, or injury to this arm or it could cause infection and other complications.<br />
However, she was less convinced that this would never resolve, in fact thinking it was entirely possible for him to "grow into" his lymphnodes.<br />
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So, as you see....life has been full and this is why my blogging is sporadic. Enjoy some pictures...until next time.<br />
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<tr><td class="tr-caption" style="text-align: center;">Eliot at the ranch</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Aunt Jenny and Anna before Indigo Girls concert</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0o9GrV1ZugFjGzOp_zmtVulNq0c6DOmCxu2hRUNF-RpQndvJ-S1q4Mg0LAhmSQNsULMA55I3GgU1VB1SEZuENrDIL9tLRQN58nBs-VMDN-zBsZfBGuzZJbOXm4tn21npRd5GGUVGZ6X4/s1600/IMG_0098.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0o9GrV1ZugFjGzOp_zmtVulNq0c6DOmCxu2hRUNF-RpQndvJ-S1q4Mg0LAhmSQNsULMA55I3GgU1VB1SEZuENrDIL9tLRQN58nBs-VMDN-zBsZfBGuzZJbOXm4tn21npRd5GGUVGZ6X4/s320/IMG_0098.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK4H7bZYdejlA94P9pPqrbvo54SmC9QS4iPpRU5ChJj1qN1y-f9NkSF5nkegr273oKRzY3Vcv_DwQSllVkasfReyki9iDM0Gu029TmsKI0dbDtdL5EZ0vx-90OhZ2e-YKN2FBboAAjkN8/s1600/IMG_0072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK4H7bZYdejlA94P9pPqrbvo54SmC9QS4iPpRU5ChJj1qN1y-f9NkSF5nkegr273oKRzY3Vcv_DwQSllVkasfReyki9iDM0Gu029TmsKI0dbDtdL5EZ0vx-90OhZ2e-YKN2FBboAAjkN8/s320/IMG_0072.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">peach blossoms</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaTvduPQ2FNsYCB2yC7xW9zyyeRRJWAWGARvHq6AJ-kwIiOlmrq28kNy4lBXlTq-wnZ4swUY63lySEC4RSWcgSDgOFvQnH8_2S-AfnAntZv18Bx14nOAVBDj1bI2RgRK2xTS5MwvZ1ILs/s1600/IMG_3623+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+%25287%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaTvduPQ2FNsYCB2yC7xW9zyyeRRJWAWGARvHq6AJ-kwIiOlmrq28kNy4lBXlTq-wnZ4swUY63lySEC4RSWcgSDgOFvQnH8_2S-AfnAntZv18Bx14nOAVBDj1bI2RgRK2xTS5MwvZ1ILs/s320/IMG_3623+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+%25287%2529.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Auggie</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm9xQrMIJSrnI_WQ4qZl9tg7qd3TWz5ELHjVODtgWScQD2VVSuz6PSiaodVASAv7ub5242cy-zAVdGFOjglHhHMb82YIj12xBHjZpOIoUIU3MIZql0a511F4XjyS1ARgc_xTXKH7eGJQg/s1600/IMG_3501+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+%25284%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm9xQrMIJSrnI_WQ4qZl9tg7qd3TWz5ELHjVODtgWScQD2VVSuz6PSiaodVASAv7ub5242cy-zAVdGFOjglHhHMb82YIj12xBHjZpOIoUIU3MIZql0a511F4XjyS1ARgc_xTXKH7eGJQg/s320/IMG_3501+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+%25284%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drive in with the cousins to watch the Croods</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRwsNqPp7iRY_XSFbr5QYHCC4h9k5p0YnScvcaY71tIDADdeiT_9X_c-M7sZreAp6XYUKNWFEfQMmVcF4xecYHE0b1uDt2Zc8zrBcXTVPTu23kAhnA_yUg_aPAp7e1qlpWFKPWJ5GuaWw/s1600/IMG_3638+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+%25284%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRwsNqPp7iRY_XSFbr5QYHCC4h9k5p0YnScvcaY71tIDADdeiT_9X_c-M7sZreAp6XYUKNWFEfQMmVcF4xecYHE0b1uDt2Zc8zrBcXTVPTu23kAhnA_yUg_aPAp7e1qlpWFKPWJ5GuaWw/s320/IMG_3638+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+-+Copy+%25284%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">running to Crazy Pa before lunch</td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">Lego Land</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_hcpizYa5RXYGkuPDiMVoW6Un52vmk_lpSCa1fo4F-9KVgLRINarMFUFozMMttibcDAysIr5qXO6xpc1pWRBD8ZJAQgLmYAOpg9b_i_5NRVLKENzFbYJ3JDd5xulL_U2kqJr-8RHXfvQ/s1600/Kens+Iphone+1579.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_hcpizYa5RXYGkuPDiMVoW6Un52vmk_lpSCa1fo4F-9KVgLRINarMFUFozMMttibcDAysIr5qXO6xpc1pWRBD8ZJAQgLmYAOpg9b_i_5NRVLKENzFbYJ3JDd5xulL_U2kqJr-8RHXfvQ/s320/Kens+Iphone+1579.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Marge and Crazy Pa with Auggie</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin51GVeZVzXIiKefdxa0WKTiXKNXSw7lI6tBCojy92QoFuD_lepixNHS2rAfs62TQNUF_3nuMQesrTeMXMQZHrK73f1sn63z8cQfi5xllrK1Tr0epmgO9laFClRTo5ONdKVfhLCSnfsXo/s1600/Kens+Iphone+1574.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin51GVeZVzXIiKefdxa0WKTiXKNXSw7lI6tBCojy92QoFuD_lepixNHS2rAfs62TQNUF_3nuMQesrTeMXMQZHrK73f1sn63z8cQfi5xllrK1Tr0epmgO9laFClRTo5ONdKVfhLCSnfsXo/s320/Kens+Iphone+1574.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Auggie and cousin Aurora</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZRTmF7Jf6Cb1sWCz_PDnHdUQKVCaNLHee44VOZs4qZ6U36_naf2HmP83dK9C3Vd7Am2MIYj645q2goGBJDQoaBu9CuRRpk4Ufssobfn598DO7hx49X6UJSOuQ0rS8GGj1se7BzmD3H_4/s1600/526630_10151353239631771_1453455967_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZRTmF7Jf6Cb1sWCz_PDnHdUQKVCaNLHee44VOZs4qZ6U36_naf2HmP83dK9C3Vd7Am2MIYj645q2goGBJDQoaBu9CuRRpk4Ufssobfn598DO7hx49X6UJSOuQ0rS8GGj1se7BzmD3H_4/s320/526630_10151353239631771_1453455967_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">hiking</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjewINAhUoYS8oQxF9gBhBDQF-IlaOPWOkkw3GT-JDlZml21p-10phbZgCbMw_adOMlphRDn7-w67uDMAdQkSudnls6uf99MhNcAvi88ZlkSi1On_6lfp-ImptmfpZ6kjvtWcniLNqPLuI/s1600/Kens+Iphone+1606.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjewINAhUoYS8oQxF9gBhBDQF-IlaOPWOkkw3GT-JDlZml21p-10phbZgCbMw_adOMlphRDn7-w67uDMAdQkSudnls6uf99MhNcAvi88ZlkSi1On_6lfp-ImptmfpZ6kjvtWcniLNqPLuI/s320/Kens+Iphone+1606.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Martha</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0YJSSEvdivoFnbFz4MqzwVCDHq_XHf8oX0LlvKtbmPsjHWR957gZemEjU-WlHymg5pJUQh1LZkSC9vEW9kfz_OaI8mcvkvFMVemPSYAodaOUBdGMPsp3Ki6j2Meuzzuu3gDDcNL3EtDw/s1600/883026_10200981832855114_776869850_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0YJSSEvdivoFnbFz4MqzwVCDHq_XHf8oX0LlvKtbmPsjHWR957gZemEjU-WlHymg5pJUQh1LZkSC9vEW9kfz_OaI8mcvkvFMVemPSYAodaOUBdGMPsp3Ki6j2Meuzzuu3gDDcNL3EtDw/s320/883026_10200981832855114_776869850_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Critter Keeper</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju7aA3TMd6wTEBK-oAR3Cwe2ICfqKRz2YxD88P7r2WNhZzlCMzuSRTEBLmlTpIufKZWOaJbm2k1rwLppXOqlO9tsQY65nkUjPquW8u4zJddvA_Pz5H-FuezbpxOdTc6MbdjHA2822pk_0/s1600/IMG_0523.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju7aA3TMd6wTEBK-oAR3Cwe2ICfqKRz2YxD88P7r2WNhZzlCMzuSRTEBLmlTpIufKZWOaJbm2k1rwLppXOqlO9tsQY65nkUjPquW8u4zJddvA_Pz5H-FuezbpxOdTc6MbdjHA2822pk_0/s320/IMG_0523.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oliver's K5 graduation</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9fJwyTonpcYDFP8GIQxmoohstTMQPH443ULcV3h8awyRtBgiLIpNosYXbhEjP7TAIkDpZqslf4wK2GmpWWpobD71B45e13_Wk9-Mys0UhvHPje9s-DGPZo9PAOl7RcKhP4LJr2S8BbE/s1600/IMG_0493.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9fJwyTonpcYDFP8GIQxmoohstTMQPH443ULcV3h8awyRtBgiLIpNosYXbhEjP7TAIkDpZqslf4wK2GmpWWpobD71B45e13_Wk9-Mys0UhvHPje9s-DGPZo9PAOl7RcKhP4LJr2S8BbE/s320/IMG_0493.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">with Teacher Mrs. Harkey</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqUVBMuZcBG2bOjxWTuFmmH4qdfGJjE6SSnWbBVopV3QohZhyphenhyphenvYMZ9aZEbGqXUSIpwRFLa3UzYj_BjPtOjbsg3J59V6Th3qR5Du_hjsUW8FOQ9ECG8lleiyjaqd55fDerphyphenhyphenn_l4MgLRs/s1600/IMG_0494.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqUVBMuZcBG2bOjxWTuFmmH4qdfGJjE6SSnWbBVopV3QohZhyphenhyphenvYMZ9aZEbGqXUSIpwRFLa3UzYj_BjPtOjbsg3J59V6Th3qR5Du_hjsUW8FOQ9ECG8lleiyjaqd55fDerphyphenhyphenn_l4MgLRs/s320/IMG_0494.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">with Teacher Mrs. Todd</td></tr>
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-14019082916381208012013-04-24T18:51:00.002-07:002013-04-24T18:52:05.814-07:00Updates<br />
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Its been a long time since I posted...what can I say, I am busy. I went back to work on the 8th of April, I am managing our household, a puppy, and FOUR kids. Its a full and lovely life.<br />
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Auguste is 10 weeks old. He is doing great. We took him to cardiologist last week and his PDA and pulmonary hypertension have fully resolved. His lymphedema to his left hand remain. He<span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"> was seen by the phlebologist Dr Stambro, who specializes in lymphedema. He said Auggie is his youngest patient. He believes Auggie has a lymphatic malformation. Essentially he also thinks it is a close observation but told us that we are in it for " the long haul". We asked if he thought it would resolve and he said it would be the first time. He was really nice and recommends physical therapy with mld therapy. Unfortunately the best therapist for him isn't in our network and insurance will only cover 30%... So I have to make some calls and see what I can work out, otherwise we will have to use one of the therapist who </span><span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">mostly see the breast mastectomy patients rather than kids. Dr Stambro thinks we will start w therapy and wrappings and will eventually order custom sleeves. He does not know of we are out of water as far as effusions etc.. So still have to watch. Ugh. He also said that often the edema gets worse w puberty. We also need to be cautious and pray he doesnt ever injure the arm. Fortunately, he said that typically the only time you see deformations is when it is neglected and confident we will be right on tip of things. The meeting felt to be one of the most informative thus far.</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">We see infectious disease on Friday and can get some insight on our plans regarding his immune system.</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">He is really the sweetest baby evah!! He loves to cuddle and is starting to be very content watching the kids, and its much easier to get things done.</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">He is a big boy. He actually is 24 inches long and 13 lbs at his doctor visit a few weeks ago. Wowzers. What can I say, the boy likes to eat!</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">Mickey is in Kansas this week interviewing at Kansas State. Yes, you heard me correctly. This was a hard thing for me to take at first. I had said all along that Nebraska was off limits due to weather...Manhattan Kansas is only about an hour south...geographically speaking, no different than Nebraska. </span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">I know that Mickey has worked hard to get where he is...so I have decided to seize the day. I believe we can use it as an opportunity to downsize and simplify our life. I am not going to work initially and may only go back part time for a while. We know that any move we make right now is only temporary, so why not use those years as an opportunity to really focus on the kids and each other. So no matter what happens, and where we end up next, we are going to make it all about our family.</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">I am actually looking forward to taking an opportunity to slow down and be able to spend more time holding my babies and helping in Oliver's classroom, etc. I also want to use these few years to do a few things I have not had the time to do, like writing, music and sewing.</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">I am not sure if Manhattan (Kansas) is the place we will go...there are some other potential things that I will fill you in on later. I am just praying that Mickey feels clear that whatever school he chooses is the best thing for him and for our family. Pray for us as we make so many changes in the near future.</span><br />
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;"><br /></span>
<span class="text_exposed_show" style="background-color: white; color: #141823; display: inline; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13.63636302947998px; line-height: 17.99715805053711px;">Now, here are some pictures.</span><br />
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TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-78954947177318111792013-03-20T18:24:00.001-07:002013-03-20T18:31:12.520-07:00Unconditional Love<div class="separator" style="clear: both; text-align: center;">
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Our baby miracle is 5- 1/2 weeks old. I went to my 6 week check up and got to show off this perfect beautiful baby boy. Before my appointment I went upstairs to my maternal fetal doctors. I didn't have an appointment but both Dr. Nathalapaty and the genetic counselor were there. We discussed Auggie, his miraculous recovery, his hand, his heart...<br />
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It is a lot of fun talking with people who have never seen a living breathing hydrops survivor...to see the awe in their eyes and see them experience for a second what I experience each time I look at him.<br />
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Dr. Nathalapaty asked sincerely what I would suggest as far as my experience and how they can improve. I was grateful he asked. I, of course, have thought through this a lot. He asked if they should be less grim. I don't know. I think being realistic is important and I know that Auggie is certainly NOT the norm. However, now that they have seen miraculous recovery, they could give statistics, but remind patients that there is indeed hope.<br />
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I thought about research. I think it is hard to advocate for research on hydrops, mainly due to hydrops being a symptom is many different diagnosis. However, I do think more research regarding interventions for hydrops is important.<br />
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I told Dr. Nathalapaty that if I could help with one change, it would be for appropriate referrals. I feel that we had to ask for referral, and even then, the referral was to Charlotte, and although Dr. Stephensen was a wonderful doctor, she was not in the position to do anything for our baby either.<br />
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As you may recall, the standard of care for a baby with hydrops is termination, or do nothing and wait for baby to die.<br />
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I advocated that they refer to facilities in the position to do something about fetal pleural effusions, or hydrops. Referral to fetal interventionalists that actually do shunts and consider them in hydropic babies. Dr. Nathalapaty asked if I knew of more facilities, and I have been compiling a list which I plan to get together for him.<br />
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The genetic counselor, Jennifer, asked if I would be open to speaking with other parents, and I of course eagerly said Yes. I may not know everything, but since being part of a great support group, I certainly can help find answers.<br />
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Some of the girls in our group are currently writing information regarding carrying a baby despite a fatal diagnosis. It is going to be amazing to see it put together. It is difficult carrying a baby with the knowledge that you will likely not be taking them home. I still get teary each time someone gets a new diagnosis or each time someone mentions the hour or day that their baby lived. The beautiful hour I imagined having with my Auguste. My entire pregnancy, preparing each day for meeting him and saying goodbye to him at the same time. But knowing that no matter what happened, that our love for him would not change, and that any amount of time, from the next kick to the first breath...would be worth having with him. Because in truth, we will all die...and witholding love due to the risk of heartbreak is a ridiculous notion and with only leave you with emptiness. Every moment spent loving is worthwhile and rich. We get no guarantees and just have to make a decision. Unconditional Love.<br />
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After my doctors appt., I went to our office located in the hospital, and then the office across the street, where I do most of my work. It was so lovely seeing all my co-workers and letting them finally meet Auguste face to face.<br />
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We reminisced a bit about when I took the nurses and medical assistants aside and let them know that I had decided to carry this baby, but that likely we would not get to keep him, and how I needed their prayers, and I preferred no showers or preparation for bringing him home, but that I wanted them to treat me normal, and be happy for the happy moments with me and understand when I needed to cry. They were all so wonderful. For several weeks, before I took leave, we did just that. I pretty much went into the bathroom to cry between each patient appointment.<br />
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Cheryl reminded me of when she and Jennifer and I went into the pharmacy and cried and prayed for Auguste, and also for peace.<br />
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We cried again today. Cried as we held him and all of those emotions came flooding back and how we held this perfect little miracle. Markalena, a co-worker from upstairs, prayed with us again today, holding Auggie's little hand, and at the end of her prayer, she prayed for the wonderful man he will one day become.<br />
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It is a little stressful and beautiful at the same time to realize that I am raising a man. Another co-worker came by and said "Auggie, you are so beautiful...you know, you might marry my daughter some day?"...<br />
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it's true, he might. I reminded her that I have two sons...<br />
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Oliver said his prayers tonight. He spent so many months praying only for "Baby Auggie to get better", that he always feels he needs to add something about the baby. Tonight he ended his prayer with "Please let Baby Auggie have a warm heart". So so sweet. Lots of prayers for Auggie...no longer for him to live, but for him to live a life full of love and integrity.<br />
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Beautiful<br />
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it all reminded me that I am raising two future husbands and two future wives....all the more reason to let them see us kiss, let them see us pray, let them hear us laugh, let them hear us sing, let them feel our love each moment.TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-32351758277086666802013-03-18T11:10:00.003-07:002013-03-18T11:11:06.979-07:00Thought of the Day<h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}" style="background-color: white; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; font-weight: normal; line-height: 18px; margin: 0px 0px 5px; padding: 0px 20px 0px 15px; word-break: break-word; word-wrap: break-word;">
<span class="messageBody" data-ft="{"type":3}" style="color: #333333; font-size: 13px; line-height: 1.38;">"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." ~The Water Giver</span></h5>
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TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-82259467450733706342013-03-14T20:11:00.000-07:002013-03-14T18:48:06.618-07:00UBUNTU , Rainbow Fish and My Boy<div style="padding-bottom: 2px;">
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<span style="color: #211922; font-family: 'helvetica neue', arial, sans-serif; font-size: 11.199999809265137px; line-height: 1.35em;">An anthropologist proposed a game to the children of an African tribe. He put a basket of fruit near a tree and told them that whoever came first would win all the fruit. When given the signal to run, the children held hands and ran, sitting down together to enjoy the prize. When asked why they had run together, if only one could get all the fruit, they said, UBUNTU, how could one of us be happy if everyone else is sad? UBUNTU in Xhosa culture means: ”I am because we are"</span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">So, I posted the above post a few days ago...its a beautiful image and a wonderful little story...I thought that for the post I plan to write today, that I would just expound on that since they sort of relate.</span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">Boy has autism. I don't write about it much. Why? Not because I am ashamed. In fact, accepting autism was indeed difficult for me, until I realized that the diagnosis did not change who he was and what he was to me...he was still my Boy, my smart sweet beautiful Boy...instead, the diagnosis actually helped me to understand him more and I am a better mother to him with the knowledge. </span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">I don't write much about it because I want him to have memories of a happy childhood and I am worried that if he ever read something like I am posting now, he may start thinking his childhood was not as good as it really is. No child could be loved more and I want that to be what he carries with him through life.</span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">Boy is extremely bright, high functioning and in normal classroom setting. His challenges pertain to relating to others. He is extremely affectionate and he loves his friends and he wants to play and have play dates just like all the others. He does tend to be more one sided in his play and he does not always know where play ends and real life begins. When kids hit and rough house, he tried to join, but sometimes gets too rough, or takes it personally when they hit him or say mean things. </span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">He remembers everything, to the point that we are often shocked by the span of his memory. He doesn't shrug things off the way many kids do, and he can be quite sensitive. In fact, what some may think of with autism as a lack of being in tune with things, he actually has a heightened sense to things. He is selective with those things and his selectiveness often causes him to perseverate on details, and this defintely makes him stand out from the group. </span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">He often tends to be on the outside looking in. </span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">This makes me sad. </span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">His doctor says "Its sad because he is so smart and yet, we have to teach him this part, and it doesn't come naturally and he has to work hard at the things that come naturally to others, just like some kids struggle with reading or math"</span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif; line-height: 1.35em;">He uses echolalia to process information. I love this but it also makes him stand out. He speaks out of turn and gets excited and sometimes repeats things other kids say or do in an excited manner that is not in context. </span></div>
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">He loves to imitate bad behavior. This drives me crazy. If another kid says something off color or is rowdy and causing trouble...Boy LOVES it.</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I am extremely sensitive to my Boy. He is my love and when I hear things that are not happy regarding him, I probably am more emotional.</span></span><br />
<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I am also extremely protective of him. </span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I am a social person and I want him to have friends and be happy. Mickey is more of an introvert and I know that there are many people who only have one or two friends and they are very happy...and if this makes Boy happy, then I am happy. BUT- if he is seeking interaction and getting turned away, then that makes me sad. </span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">Mickey feels that he will be fine because he has good looks and is smart and athletic, and that will carry him pretty far...I think he could be right. But smart doesn't constitute happiness and I want him happy.</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">At my grandfather's funeral I encouraged him to go play with some other, older boys in the family. I watched as they told him he wasn't fast and they didn't want to play with him. I burst into tears, luckily people just thought it was because of the event we had gathered for. </span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I know that he has trouble with some of the boys in his class...they are boys and he is easy to get in trouble and he is easy to bully, and he doesn't always "get it" and will do almost anything foolish if he thinks it will include him. These are good boys, sweet boys and often they are extremely sweet to Boy. But other times they aren't. H</span></span><span style="color: #211922; font-family: Times, 'Times New Roman', serif; line-height: 21.59722328186035px;">e never seems to play with the same kids and often plays with whoever happens to "like" him that day...sometimes they do like him...</span><span style="color: #211922; font-family: Times, 'Times New Roman', serif; line-height: 21.59722328186035px;">When I ask him who he plays with at school, every day it changes...because he doesn't have one steady friend who is always there.</span><br />
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<span style="color: #211922; font-family: Times, 'Times New Roman', serif; line-height: 21.59722328186035px;">Some days they apparently play a popular playground game called "run away from Oliver". </span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I asked him if they actually said 'those words' and apparently, it is the name of a game they play. I asked him how it made him feel and he said "It makes me really angry and I kick the mulch". Mickey told him that when they play that game he needs to NOT CHASE them and then it won't be fun to play...</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I don't think he gets it though and will probably continue to chase them and ask them to "please will you play with me". (yes, this is what he tells me about). I feel very blessed to have a boy who opens up and tells us things when we talk with him. I also know that much of what he tells us is his perception, and unfortunately, his disability </span></span><span style="color: #211922; font-family: Times, 'Times New Roman', serif; line-height: 21.59722328186035px;">is based a lot on how he perceives things and perception accounts for much of what we get out of this life.</span><br />
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<span style="color: #211922; font-family: Times, 'Times New Roman', serif; line-height: 21.59722328186035px;">I feel very sad that he ever has to feel sad on the playground.</span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I know that going through these things will make him a more empathetic person, as you can only learn empathy by experiencing pain...I also know that we all experience these things and overcoming them make us stronger...</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I just wish things could be different. </span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I remember being in the fourth grade and there was a paper passed around to sign up to be a member of the "I Hate ___ Club". I remember making a 9 year old decision not to sign my name. I know at that point that I knew it was a cruel thing to do. However, I also remember leaving friends out,and often hurt the friends closest to me. I think it is easiest to hurt those closest to you because you know where their soft spots are.</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">Unlike Oliver, I always had a few people in my corner...yes, we fought, but we always had each other. I never had to worry whether they'd like me the next day. </span></span><br />
<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;"><br /></span></span><span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">Some of my best friends and I have known each other nearly all our lives...being friends when we were Boy's age. We are close because we overcame. We are friends because we had to learn to forgive and ask forgiveness. There are some things, deep things, that come to surface during our chats, that we have to ask forgiveness for still...some things 20 years old that we recall and have to say "hey, remember junior year when _____, that really hurt me."...</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I feel so blessed to have friendships where forgiveness is unlimited and we can be open about our pain and our shortcomings.</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I have failed many friendships and I have lost some that have never returned, and I don't believe in the "if it doesn't return it was never meant to be"...I don't believe that. I still grieve lost friendships...because I love people and if any of those people ever read this, I will go on record right now by saying "I am sorry and I miss your friendship".</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">Today I went on a field trip with Boy's class and we saw Rainbow Fish. It was really cute and had a hymn like song about sharing your gifts, and also had a song about seeing yourself through one another...I felt happy and sad because I want my Boy to have friendships that reflect the best in him.</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">I may not leave this post up long because of the sensitive things I said about Boy...</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">But I do ask for prayers for him, that he will find lasting friendship and lasting love, the way I have been so blessed to have...because those relationships are what makes this life so very beautiful.</span></span><br />
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<span style="color: #211922; font-family: Times, Times New Roman, serif;"><span style="line-height: 21.59722328186035px;">So, how does this relate to the initial post above...UBUNTU...may we all remember that we will only be truly happy when we create happiness in those around us. Rainbow Fish learned this today and its a lesson we can always be getting better at.</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Boy and brother Auggie (who we will start calling blog name 'Oak' very soon)...I love that my kids always have each other. It makes life so special.</td></tr>
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TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com1tag:blogger.com,1999:blog-5108641883809157523.post-83984273447399895072013-03-12T15:57:00.000-07:002013-03-14T15:57:56.875-07:00ONE MONTH OLD!!!<div class="separator" style="clear: both; text-align: center;">
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He is perfect. He is babbling and chirping and growing so big...I feel so blessed. I broke into tears yesterday when I read a post by someone new to the hydrops page..she spoke of feeling him kick and knowing he was dying and how painful that was...her pain took me back to when we were diagnosed...and it cut just as deep as it did that day...I felt them again...<br />
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then I looked in my arms and felt so very very blessed that I didn't have to give him up yet...<br />
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Loving the miracle I've been entrusted with. Thank you Jesus for your many blessings and for this extremely precious gift.<br />
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As for me I will always have hope, I will praise you more and more- Psalm 71:14 (this is the verse that carried me through or pregnancy)TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-11858965644617219482013-03-07T19:17:00.000-08:002013-03-07T19:18:12.872-08:00Three Weeks Old<div class="separator" style="clear: both; text-align: center;">
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Auguste turned three weeks old on Tuesday. The weeks seemed to move so slowly leading to his birth and have flown by since then.<br />
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The weeks have been full of mixed emotions and concern....Hydrops is a very rare condition, approximately 1/1500 with only 10% being survivors. Survivors are usually diagnosed later in pregnancy and early detection is typically a poorer prognosis...of those survivors, many spend weeks and months in the NICU...<br />
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therefore, a baby like Auguste, with early onset hydrops, then spontaneous resolution, is very rare indeed.<br />
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I have read about a few, who are now healthy children and it is what I prayed for the entire pregnancy.<br />
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I also have met a few on the hydrops support pages, and two of those babies have since died of immune deficiencies. Yes, babies just like my Auguste, sent home, healthy...then dying later of infections, one at 5 months and one at 33 months.<br />
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This is heartbreaking and obviously, on my mind...after all he has been through, what if this, what if that?.<br />
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I discussed this with our pediatrician today. He basically said that Auguste is not a "normal baby" and as much as we hope he IS a "normal baby", there is no textbook for how to deal with things or what to expect.<br />
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He decided to put in a consult for infectious disease. It is likely things will be fine but better to have peace of mind, and let them do a work up and thus be more assured his immune system is functioning as it should. He also feels they may be able to give us more insight on his hand.<br />
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This will likely happen in the next few weeks and our cardiology visit is at the end of April, so hopefully by May we may have a clean bill of health.<br />
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He does still have a communicating hydrocele...this is given a year to clear up, but does increase risk of hernia and we have to watch that closely. This is a common finding in male babies, but I have found that it seems of the male hydrops survivors I have spoken to (well, their mothers)...they have almost all had it. Interesting. This seems to be the case with many little things, such as his pectus excavatum (thought to possibly be due to bone development while lungs were not inflated) and his nevus mark on his forehead. All newborn variants which seem to effect most of the hydrops babies....it is interesting to say the least, but still difficult to establish any normals with these children.<br />
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On a very positive note, he was 9 lbs 4 oz today which means he has gained a 1 1/4 lb since our visit two weeks ago...Mama's milk is amazing stuff!<br />
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I think what is important to gain from my current worries is that in truth, any of my children can still get sick and I can protect Auguste no more than I can my other children...life is fragile, and these children are just on loan to us for a while. I had a friend describe having a child as being willing to let your heart run around outside your body...and that was the most accurate statement I had ever heard...I have four hearts running around and I can only do so much to protect them...and the rest I have to have faith and trust God to take care of...<br />
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He got us this far.....<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-53492482649825743882013-03-03T19:29:00.000-08:002013-03-03T19:38:58.863-08:00A Story to Shout From the RooftopsIt hard to blog lately...<br />
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for so many weeks I blogged about pain, about fear, about faith, about hope...and now...well, I still have all of those things, but the feelings are no longer as intense, and it is as if the end of the journey occurred and its a lot less climactic.<br />
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I prefer it that way. I prefer the boring life that doesn't have the constant fear and worry that my life was consumed with only a few weeks ago.<br />
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A sleeping baby lying across my body is a much better feeling. And I am so grateful...but I am not sure how often I must say it. How often must I shout that I give Him all the glory. If I don't say it, does it mean I don't feel it. No.<br />
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Its a weird feeling...life goes on and I have this amazing blessing, and I am still at the point where I take almost every opportunity to tell Auggie's story...but at the same time...life goes on...and how many times does a person tell it. Once a minute, a day, a week, a year.<br />
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If I were being truthful, I would say that I don't know what to do with this amazing story.<br />
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His life...does he owe more than the rest of us? That's a lot of pressure to put on a wee boy<br />
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I think back and say...if we had only had the 16 week ultrasound and never had the one at 19 weeks...we would have never known about the hydrops...and yet, it is likely it would have still resolved and we would never have even known what a miracle he is.<br />
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In truth...I wonder if I would have preferred it that way.<br />
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I know that this journey changed me and inspired many...I also learned a lot about myself and my faith and my relationships...it was a journey worth taking, for sure...but one must admit that sometimes ignorance is bliss...a lot of pain and worry and financial security would have been spared had we never known...<br />
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I now just feel like I need to figure out what the reason for it all was?<br />
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I hope somehow his story can offer hope to the hopeless...but will his story change their outcome...at the very least it may encourage people to being willing to face their fears and go on the journey...even when the outcome is unknown.<br />
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Was that why? </div>
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Did God challenge my faith? Did He want me to meet new people, reconnect with old ones? Was it to remind us of the power of prayer? Was it to remind us all of the fragility of life? The blessings of a child?<br />
Am I to write a book? Am I to March of Dimes? Advocate for research?<br />
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I don't know yet. I know that Auguste's story touched many and that I am not the only person who has been amazed by his life...<br />
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Maybe this story is his and not mine at all...<br />
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I guess the story continues ...and we all continue with it....<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com2tag:blogger.com,1999:blog-5108641883809157523.post-66787875014825976762013-03-03T19:21:00.003-08:002013-03-03T19:30:57.534-08:00Vegetable Salad...Yummy Yummy<div class="separator" style="clear: both; text-align: center;">
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I have two picky eaters....<br />
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Buttercup, although she eats sparingly, will eat nearly anything...<br />
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However, my oldest two are extremely picky. I don't know what I did to contribute to this but it remains a fact and we deal with it every evening around 6pm.<br />
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Boy is the hardest and he seems to only get pickier and pickier as the days go on.<br />
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I have tried everything from forcefeeding to threatening etc...<br />
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I am no stranger to this, as my dad went through this with me as well...I was very picky, but as an adult I eat and enjoy just about everything.<br />
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My kids don't even eat what I consider to be reasonable foods though...no hamburgers, no chili, no pot pie, no soups...they like pasta. They would eat pasta and sandwiches all the time. But pasta does not have the nutritional value for me to feed it to my kids on a daily basis. PB & J...well, that is certainly yummy as well...but I have been feeling like I am between a rock and a hard place.<br />
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Today I sat down, exacerbated at the thought of another difficult dinner as well as the idea of making him a separate meal...<br />
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I looked at Mickey and I said "how do we make sure he is healthy?"<br />
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So...we decided to make a deal with the kids....<br />
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IF they don't want to eat the meal we prepare for the family...then they can eat broccoly, carrots, cauliflower. Eat it til they are full. They will get no dessert on thos days, but at least I can know that they are eating something healthy for their bodies.<br />
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Boy thought this was a great idea and Bluebird joined him tonight. The both ate two full bowls full of what Boy endearingly called "Vegetable salad".<br />
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I suppose there are worse things in the world.<br />
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So...how do you get your kids to eat? What do other people do in this situation?TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0tag:blogger.com,1999:blog-5108641883809157523.post-45259975991702585082013-03-01T19:36:00.001-08:002013-03-01T19:36:58.284-08:00Snuggle BugAuguste turned two weeks old on Tuesday. Its been pretty incredible. We all adore him.<br />
We feel incredibly blessed by this little guy. Emily and Eliot constantly give him kissed and I admit, so do I. He is just so very kissable. He is extremely cuddly and we all pretty much fight over who gets the next turn holding him. Here is a photo of Bluebird giving him some snuggles.<br />
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<br />TheLFamilyhttp://www.blogger.com/profile/06496282127361749003noreply@blogger.com0