tag:blogger.com,1999:blog-52969241870481373742024-02-20T16:02:05.378-08:00Grace UnhingedGrace Unhinged --
A mom's daily ramblings of raising a daughter and three sons. Young adults, twin boys, a farm with goats to chickens, gardening and quilting, work and my sweet husband especially. Taking a day at a time and by the grace of God, we make it thru.Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comBlogger641125tag:blogger.com,1999:blog-5296924187048137374.post-48954672609754908612018-03-14T18:09:00.002-07:002018-03-14T19:44:28.801-07:00Beside TommyToday our school district celebrated Paraeducators. Us as parents made them a luncheon and told them thanks in a very heartfelt way. I want to say what it means for Tommy to have a Para and what an amazing effort they put forth EVERY single day. <br />
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The definition of "para" means "beside". And I can't think of a better way to describe these folks other than "educator beside" Tommy. <br />
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Paras help him "talk". Tommy doesn't talk. He uses sign language.....technology.... gestures...and a few grunts to get his requests made and get his needs met. So when he comes home at the end of the day, I have no way to ask him the usual "how was your day?", "what did you practice in music?", "who did you play with at recess?". The Paras that work with Tommy write to me each day in a data binder that we have kept for 8 years.<br />
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Every evening I can open the data binder and see how Tommy's day was and I know what questions to ask him so that he can feel successful in a yes/no answer, "music was tough today?, you didn't want to play on your recorder?". His Paras help him with his ipad software so he can make social comments to classmates, "I like your shirt" the Para helps Tommy find the right buttons to push on his ipad so he can make a comment to a friend.<br />
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Paras keep him clean. Yep. He is that 11 year old, 85 pound boy, that didn't learn to toilet train and his post surgery issues 'down under' may have prevented him from learning. These Paras get stuck with all of Tommy's messy, messy issues. Wet clothes get sent home in backpacks. Packages of diapers and wipes still get sent to school and these Paras organize all the Tommy clean up tasks. <br />
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Paras teach him. For a non-verbal student with moderate cognitive delays, Tommy can read and do simple math. He can recognize change and is working on dollar bill recognition. He knows the days of the week and months. He can read and answer comprehension questions. And it wasn't because of anything we taught at home. It's because Paras sat with Tommy every day and taught him through discreet trial training methods. Repetition and game playing in education goes far with Tommy! Paras set goals for Tommy's learning and are not the first to give up on his education. They advocate for innovate teaching methods for Tommy. <br />
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Paras keep him safe. He wears a GPS most days that I sew into a tank top under his shirt. Even the Paras can keep his GPS app on their phones in case the Blonde Tornado disappears and it's all hands on deck to find him. Paras know that Tommy is a slippery wanderer and that most of them have an eye on Tommy even if he isn't their student. Tommy has a moderate immune deficiency because for some reason his bone marrow doesn't produce the right kind of Bcells. Paras will let me know if Tommy isn't feeling well. Obviously we don't send Tommy to school sick, but sometimes a common cold can become something serious for Tommy within hours. They notice even small changes in Tommy's energy and mood and will let me know. <br />
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Paras love on Tommy. He has some school and social anxieties for a variety of good reasons. They patiently wait him out if he doesn't want to go to the next class or if he doesn't want to even walk into the music room. They whisper encouraging words into his ear. They ask him what he would like to do next IF he gets through a task he doesn't want to finish. They zip his coat and tie his shoes and make sure he doesn't choke while eating his lunch. They love Tommy so much!<br />
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Paras support Tommy's love of others. Tommy and Lexi enjoyed a picnic end of school year together last year in part because the Paras all help Tommy be successful socially. </div>
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We THANK all of Tommy's paras for making his education and life brighter. His future is better because of YOU!!<br />
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<br />Sandihttp://www.blogger.com/profile/10114713500431311511noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-43995961503823102712015-01-19T16:26:00.001-08:002018-03-14T19:50:53.606-07:00On my knitting needles and nightstand reading stack<div class="separator" style="clear: both; text-align: center;">
When I was last visiting my parents I saw my mom had a book on knitting socks two at a time and from the toe up. She lent it to me and I've been having a blast starting these socks!</div>
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On my night stand I'm reading "Little Bee" which I have greatly enjoyed. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAoo6kfE_GCh7nOMxjO8NBXGMiJORK2Jb2svWJCR-uEoSLC7isWGU-nEvJpJPxYynUCHtf4sxcT1Qz-DTDIUrjnD0FVRdOh0U5c1eFDKho_N-RTAPX8LdJ8A798olpJi-M2iDLYILhgX8/s1600/IMG_20150119_161358.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAoo6kfE_GCh7nOMxjO8NBXGMiJORK2Jb2svWJCR-uEoSLC7isWGU-nEvJpJPxYynUCHtf4sxcT1Qz-DTDIUrjnD0FVRdOh0U5c1eFDKho_N-RTAPX8LdJ8A798olpJi-M2iDLYILhgX8/s1600/IMG_20150119_161358.jpg" width="200" /></a></div>
<br />Sandihttp://www.blogger.com/profile/10114713500431311511noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-61168549667029325022014-08-09T21:04:00.003-07:002014-08-09T21:04:37.839-07:00Disneyland<div class="separator" style="clear: both; text-align: center;">
Sorry for the silence these past few months, I forgot my password to the blog! And trust me, it was killing me as I wanted to share our Disneyland trip with all of you.</div>
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We went to Disneyland during spring break and it was fun, scary, cheap, expensive, sunny, tiring, relaxing, a hot mess, and a an easy peazy time. The details tell all!</div>
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We decided to travel from Ferndale, Washington to Disneyland in our RV. We have a fifth wheel that is nearly a year old to us now. We bought it with many of Tommy's needs in mind, as well as all four of our kids and us as parents. We really enjoy our Forest River Vengeance 397 it sleeps 10 so next time you will just have to join us!</div>
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Our RV saved us the cost of hotel rooms and eating out during the trip to California. We stayed at campgrounds and cooked all of our meals. Every time we stopped for diesel, I got the boys out of the truck and did Tommy's diaper change, grabbed a snack or a new book and toy and ran around a bit to stretch our legs. </div>
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When we got to Sutherlin Oregon, we really enjoyed a "hidden rv turnaround" at the end of Ponderosa drive at exit 136. We slid the slideouts out and let them run around in the rv and use the potty and just in general relax before getting back in the truck. This part of Oregon was beautiful. Lots of green grass, rolling hills and sheep. It reminded me of Ireland. We stayed the night at Medford KOA in Oregon and it was easy to get in/out. 601 miles under our wheels the first day! We won't talk about how much the gas was, some durations we only got 7-9 mpg.</div>
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We left Medford at 8am and crossed the California border by 9:15. We filled up diesel in Yreka at exit 773 and it was super easy in/out. As we continued through California we noticed lots and lots of rice fields. I had no idea California farmers grew rice!</div>
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Day 3 we stayed in Santa Nella at the KOA. I will gladly share with you that the camp manager has the hospitality of a roach. A cockroach. Our truck had begun a slow spiral into what we now know was a major break down. But it was only a 'set back' in Santa Nella and Colin left the boys and I for the day so he could drive into Modesto and get truck parts. The boys and I enjoyed adventuring around the KOA and I made lunch and started doing some chores. I was outside of the RV getting something picked up off our picinic table and turned around to notice the RV door wide open. And only Liam inside. Panicking I started yelling for Tommy and racing around up and down the RV aisles. Tommy of course isn't going to 'yell back' but by calling his name I've found it stops him or sometimes he runs toward his name, especially if he feels 'lost'. And sure enough, about four aisles from our rv I find my toe headed tornado looking L.O.S.T. </div>
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Colin fixed the truck and in the process of all the 'melting down' at this KOA including Tommy's disappearance..... Colin mistakenly hooked the RV up to 'irrigation water'. Not the fresh clean potable water. Five bottles of pepto bismol later, we were back on the road as a family. </div>
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We pulled into the Anaheim RV resort, which I HIGHLY recommend very late at night. We picked this RV resort because it looked clean and nice and close to the Disneyland resort. And they had a pool! To save money each day we took the Anaheim shuttle rather than pay for Disneyland parking. The all day passes are $5/adult and $2/kids. We could leave the park and come back to the RV park and eat lunch or take a nap and return to the park. Disneyland parking is about $22/day and you can't leave.</div>
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Nate, Liam and Tommy ready for Disneyland! We bought Tommy a 'special tomato' jogger and SO enjoyed it on this trip. It's easy to move through crowds of people. He felt very secure in it with his blanky and would often search his stroller out and crawl into it and buckle up! </div>
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To save money we packed bottle waters and chips and fruit to snack on. I also saved money by getting the little boys Disneyland character items and an autograph book at the Dollar store ahead of time! I didn't tell them about these treats until we were in the park.</div>
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At the park we enjoyed SO many rides. I believe all but one in California Adventure. And every open ride in Disneyland we enjoyed. We got to the park when it opened and left when it closed at midnight! </div>
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A couple helpful things when traveling with a child that has a disability. I tried to go it 'on our own' for awhile and not get the disability pass.... but quickly I realized Tommy's sensory needs were not going to 'wait in line' with half of America. I had prepared for the disability pass by getting a dr's note... but alas, Disneyland just asks you the parent/caregiver what you need. I told them he needed to walk around while "waiting his turn" and I mentioned he may need some special type of help during a ride. So they gave me a sticker for the jogger to mark as an item for a disabled person... this enabled the jogger to be pushed into lines where strollers were discouraged. And often we got his disability pass marked with a "come back at this time" and could go walk him around while he waited to ride. </div>
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Tommy chose to ride Pirates of the Carribean like 12 times </div>
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Liam loved Space Mtn, Matterhorn and all kinds of rides</div>
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Liam with his Mickey ears</div>
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Tommy drove the autotopia car like a BOSS!</div>
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Tommy and his many sensory needs.....</div>
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We had LOTS of fun! </div>
<br />Sandihttp://www.blogger.com/profile/10114713500431311511noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-57629976075568389932014-06-27T22:55:00.000-07:002014-06-27T22:55:30.183-07:00The kindergarten inclusion partyI'm not sure I could have said this any better than what was written in this post:<br />
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http://pudgeandzippy.blogspot.com/2014/06/kindergarten-inclusion-party.html?m=1<br />
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I'll be posting more soon on this subject and lots of pictures from our Disneyland spring break trip!<br />
<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-36814235822263037682014-05-24T10:01:00.000-07:002014-05-24T10:01:20.104-07:00Full of love and fun<div class="separator" style="clear: both; text-align: center;">
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<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-15148283021802193762014-03-29T09:49:00.000-07:002014-03-29T09:49:19.083-07:00Greetings from CaliforniaDrove 601 miles on a great roadtrip and loving California Shasta Valley. Next stop Santa Nella tonight and Anaheim tomorrow. Yes there was a 5.3 earthquake at Disneyland yesterday. Nate was sitting in the hot tub at a hotel and felt the world shaking! We get to see him tomorrow and will enjoy Disney Monday and Tuesday.<br />
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-85386314429971338772014-03-28T08:20:00.000-07:002014-03-28T08:20:38.337-07:00California or bustHeaded to California to find a mouse! Six campgrounds in places we have never camped before and a goal to be frugal on the journey and enjoy the fun this trip brings.<br />
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-18339939016054426862013-12-22T22:31:00.000-08:002013-12-22T22:31:23.072-08:00Grandparent tour<br />
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We spent a wonderful weekend visiting our parents and family. Colin will be on standby call for the next few weeks, so this was our weekend to go visit our parents and celebrate the twins birthday and Christmas with them.<br />
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Lots of good conversations, meals made by our sweet moms, my dad reading aloud from a terrific book, and plenty of time to relax and etch the memories in my mind.<br />
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Colin and I spent the hours traveling talking about some great parts of the bible and just life in it's ordinary day to day plodding. I love my hubby and how he cares for all six of us. Dreams of a soon to happen house addition and a spring vacation made me happy.<br />
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This is such an amazing time of year and joy is in all the nooks and crannies of the day, in our hot morning coffee and watching the snow fall.<br />
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Rereading Luke 2 daily and thankful for family and friends to spend time with. Merry Christmas.<br />
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<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-32493478649333810072013-12-15T19:19:00.000-08:002013-12-16T19:57:02.258-08:00Twin's 7th BirthdayI can't believe the dynamic duo are seven years old! <br />
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We decided to have Liam and Tommy's birthday at the children's museum again this year. We invited both Tommy's life skills classroom plus Liam's first grade classroom. We were so happy with all their fun friends that made their party so much fun!<br />
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This is my spin art which I absolutely love! <br />
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Hannah and I had fun with the photo booth.<br />
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All the kids really liked doing spin art. I'm heading to value village soon to get a salad spinner so we can do this art again!<br />
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Tommy loves Elmo *almost* as much as Nemo<br />
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This is the spin art area before all of us really enjoyed it!<br />
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Liam loves angry birds. We had cupcake "cakes" made which was so easy to serve. No forks and no knife needed. It's my new "cake" for all parties now!</div>
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Tommy loves the kids museum.</div>
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Lots of friends and fun was had!</div>
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-86707790786600777162013-11-18T19:32:00.001-08:002013-11-18T19:32:25.641-08:00HydroplaningEarlier this month we were suppose to go to camp. "Suppose to" was the operative words. Seattle Children's had sent an invitation in September for us to go to a weekend with some of their staff and volunteers to what looked to be a wonderful and magical looking place called Camp Korey.<br />
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Each weekend at this camp is generally a different kids with 'special needs' group, we had been invited to 'pelvic restoration camp' because Tommy's Hirschsprung Disease caused him to lose most of his colon. Some friends were also going and I was beyond excited. I had a list of questions for my friends like "toilet training" and "their thoughts on inclusion" and "sleep training". <br />
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I had generated excitement in Liam and Colin too! I was reciting what activities would be enjoyed and reminding everyone that there "is even smores around an indoor safe campfire!" So after we met all the pre reqs for camping, applications submitted, emergency contact lists, special accommodation lists, last minute flu shots.... bags were packed and crammed in the van. Tommy travels with a lot of "just in case" accoutrements and all had been meticulously packaged in luggage. Day before we are to leave, cue the big illness in Tommy. Low grade fever and junky cough. We met with our pediatric folks and our local immunology peeps and the group conscience was NOT to go to camp for the weekend. It was a good decision, 7 days later Tommy was diagnosed with pneumonia and put on a coordinated home care plan. All decisions are good right? No regrets. Right?<br />
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All the thoughts of our family doing a 'normal activity' evaporated. Liam was sad we weren't going to camp. Us as parents were sad we wouldn't be able to seem somewhat normal for the weekend and be able to talk to other parents about truly shared issues and struggles. I stepped into my shoes and trudged to my van to unpack that evening and even kicked the tires thru my tears as I ripped all the luggage out and spat bitter words into the night sky. Why can't my entire family enjoy one activity at one moment in time together? Someone is always missing, or Tommy inevitably is sick. <br />
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I've been struggling with concerns about Liam and how being raised with a sibling with chronic illness effects him. Even Hannah and Nate while away at college, get to hear of current "Tommy illnesses" during our twice a week calls. I know Tommy's illnesses effect them, and seven years ago when Hannah and Nate were just 12 and 11 they spent Christmases in Seattle Children's hospital and Ronald McDonald houses. They have tube fed Tommy, given him nebulizers, changed his diapers at age 5 (insert visual of scared tazmanian devil smeared in poop). <br />
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Don't get me wrong, I love Tommy and will go to the ends of the earth for him. Everyone in our family have and would again. I recognize daily that his joy is more Christ like than any I will ever know in this world. All of that is a given. But sometimes, I wonder while raising a chronically ill child, have I correctly struck that ever so ginger balance in motherhood of raising children and being a wife all while still keeping Tommy safe and healthy.<br />
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Sometimes that ginger balance feels more like driving in the dark night and hitting one of those large deep and wide puddles, the kind that you can feel the weight of the water slow your van, and hydroplaning. The kind where even moving the steering wheel left or right doesn't matter. The kind of hydroplaning that all you can do is hope. Hope that the momentum and direction was right before you ever hit the puddle. I think ours was right. <br />
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While I was reading <a href="http://bakersdozenandapolloxiv.com/2013/11/18/balancing-family-life-with-a-chronically-sick-child/">this wonderful family's blog post</a> I was reminded again how I question daily my mothering. My purposeful actions each moment of the day. I try to find the middle path as our SLP reminded me of last week. Not the extremes, the middle.<br />
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And with a very sweet surprise call from my favorite social worker at Children's last Friday, I was reminded to find the middle again, I lit those candles that glow with battery lifelikeness so that Tommy can't burn his hands on, and line my bathtub and relax and think about my entire family and how I can continue to love loving each one of them. And I plan our next camping trip. And I start to list all the benefits of the next place and time and dream of our family together making smores. And hope.Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-11190680182676611852013-11-12T18:31:00.001-08:002013-11-12T18:31:58.057-08:00Thank you<div class="separator" style="clear: both; text-align: center;">
Since I have never received a dozen roses before in my life....... </div>
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I didn't realize they would be this beautiful....</div>
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or the sentiment so strongly felt in the words. </div>
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But I did realize my family was *this* loved.<br />
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Because I can always feel it. <br />
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Even when my head is lost in the thickest fog and my heart is so amazingly homesick. And the words coming from my mouth less than eloquent and lacking grace. Thank you. <br />
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Hard choices are coming. Purposeful decisions for our toe headed hurricane. And love so strong we feel it although we can't see it. Faith and hope in a dozen roses.....<br />
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<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-45289349598907838512013-11-07T22:18:00.000-08:002013-11-07T22:18:16.164-08:00IEP seasonYesterday we attended the opening meeting for the annual process, called an IEP meeting, for scoping Tommy's current functioning and in some small efforts designing what his education will look like for the year. <br />
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As most of you know we asked our school to repeat Tommy's kindergarten experience and his kindy teacher asked for him specifically to return to her classroom. That, as most of you know is a energy and heart investment. And to get another year of kindergarten for Tommy has been wonderful these past few months. We are thankful for teachers that 'get it'.<br />
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There are many specifics to the IEP we are still examining and searching ourselves for what is best for Tommy's access to his education. There are many 'feelings' (really stretching out the 'eeeee' sound there) and honestly I'm pretty disenchanted. And generally, I'm a really optimistic person but this one really has me.<br />
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My personal perspective is that Tommy's access to his education is controlled by people sitting around a table who mostly have very little and intermittent experience with Tommy. Half the committee knows him well, and half the committee has very little knowledge of how he accesses his education.<br />
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I don't believe inclusion will ever be successful unless there are co-teachers in gened. I wish, with all my heart, Tommy could stay in gened longer but realize the design of our district's teaching doesn't support special education kids in the classroom. And since we as parents represent Tommy at the discussion, all I can say from his end is that transitions... push into gened for circle, pull out for life skills rest and work stations, push in for music, push in for enrichment, pull out for slp, etc create havoc to Tommy's extreme dislike of transitions. <br />
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He is asked to make more transitions during his day than a gened student. Why do we do this to kids in life skills who detest transitions? Because we try to disguise it as 'inclusion'. Because we are afraid to say education is still segregated? <a href="http://tommyupdate.blogspot.com/2012/09/why-tommy-should-be-in-your-classroom.html">Tommy should be in your classroom</a><br />
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IEP's always have an element of the unknown, different agendas (even though it should only be Tommy's education), levels of knowledge about Tommy, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. So right now, I don't even believe an amended IEP is really even an option. Visions of David vs Golliath come to mind. <br />
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<em>So when </em><a href="http://thegospelcoalition.org/blogs/tgc/2013/10/24/9-things-you-should-know-about-down-syndrome/"><em>I was reading this article.</em></a><em> Mostly to refresh my own memory of some facts. While meeting with some new families with children with Ds over the recent few months, I had forgotten some of the 'facts' because... well, quite frankly they don't matter anymore to our family. I can't recite to you all physical differences Tommy has due to Down syndrome, because they don't appear to us anymore. But when I was reading the article, #9 really stood out to me.</em></div>
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<em>From the article:</em></div>
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<em>#9. Mothers of individuals with Down syndrome typically </em><a class="ext-link" href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071600/" title=""><em>exhibit better psychological well-being profiles</em></a><em> in comparison to mothers of individuals with other intellectual and developmental disabilities. There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children's future, and they perceive their children to have less difficult temperaments. A </em><a class="ext-link" href="http://www.mc.vanderbilt.edu/reporter/index.html?ID=6087" title=""><em>major study also found</em></a><em> that divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent in the population group with non-disabled children and 11.25 percent for families of children with other congenital birth defects.</em></div>
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Now that my friends is ground breaking news to me, lol. Personally I'm really hoping that happens for me soon! Because at the IEP meeting I was not exhibiting 'better' psychological well-being. Insert image of a Siamese cat being tossed off a sky scrapper here, lol. David vs Golliath IEP issues always have kinda made me anxious. Tommy needs to communicate, but the supports are withdrawn. Tommy needs behavior modifications, but it's minimal in the IEP. And I'm not sure the amendment process would work, as we have taken that path last year and it was exhaustive for little benefit. His education is just taking a different path, all is not lost.<br />
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<em>After reading his prior book Outliers, I really wanted to read </em><a href="http://www.forbes.com/sites/danschawbel/2013/10/01/malcolm-gladwell-the-truth-about-how-david-beat-goliath-and-how-you-can-too/"><em>his new book</em></a><em>, especially after I saw the reviews included insights on disabilities and the title was David vs Golliath. "The challenge is that the people who might appear to be underdogs or to be burdened with disadvantages actually aren’t." </em></div>
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Us as parents hope that Tommy's access to his education will focus more on seeing his potential and ability and support him, rather than continue to close doors to ways he is accessing his education. </div>
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I pray for the school district, as their load is limitless and resources slim. I pray for wisdom in knowing what pieces of Tommy's education to focus on and which to let slip. I am thankful for Tommy, who was perfectly made and who's joyful smile gives our family hope and unconditional love. IEPs come and go, and even in this process and analyzing all this paperwork we will focus on the good and find joy and ways to support his team of teachers and increase our homeschooling for him. <br />
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<em>"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18</em><br />
Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-76973829479405993222013-10-13T11:03:00.000-07:002013-10-13T11:03:21.730-07:00Legofest Portland Oregon 2013<div class="separator" style="clear: both; text-align: center;">
Some stories start with a friend at work mentioning there was something coming close to town and lego related.</div>
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Some stories continue with a dad and mom feeling like their sweet six year old has been a bit 'forgotten' in the transitions of life, getting the older kids off to college, and his brother Tommy taking up more lime light</div>
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But few stories end in EPIC wonderfulness!</div>
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We TOTALLY surprised Liam by traveling to Portland this weekend for "camping" and didn't even mention we would be going to Lego fest!</div>
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We bought tickets well enough in advance which was good because the session we wanted sold out weeks ahead of time. The "sessions" are for about 4 hour of non stop lego fun.</div>
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Liam was so excited when we got there, "My heart is beating so fast!".</div>
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We were impressed by all the life size lego creations</div>
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Most of the creations were easily recognizable characters that they love. Some were Star Wars and for the older kids. Lego fest did a great job of catering for the entire family. From toddlers in the duplo area to us parents enjoying the robotics and engineering legos... and absolutely every age in between.</div>
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Lego fest was divided into over a dozen different activity areas, this one was the united states and YOU make something for it! There were all kinds of work stations with tons of legos and you attach your creation to a square lego base and wait in the "pick up area" for one of the lego staff to take your art to a certain state or just anywhere. Very fun!<br />
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Dad had just as much fun as Liam in the Mega Blaster lego area where you could shoot from your lego creation at targets</div>
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Liam really enjoyed the robotic cars with infrared remotes that climbed over obstacles</div>
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Our whole family LOVED the team sports. You could put together a team and in two minutes build the span of a four foot bridge that would be suspended between two towers. Weights would be added to the top of the bridge and either sustain that weight or dramatically (to Tommy's great love) break apart and tumble. One bridge, made by a team of young kids sustained 115 pounds!!!!<br />
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Our family did a "challenge" activity where we had two minutes to design a surprise topic... ours was "what did you eat for breakfast"... we had chocolate chip pancakes so we quickly designed those. Eeks it was fun!! And we each won a lego set as a prize. Fun topic to have "races" when we are back at home to make a common item.</div>
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Liam loved experimenting with robotics and gears</div>
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Tommy and I found a place to "relax" and check out for a few minutes</div>
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But Tommy wasn't down for long, there were piles of duplos!!</div>
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And you could make your own fire truck or ambulance to take home and play in the cities that were designed for us!!</div>
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The Speed Orz was really fun for Colin and Liam, a target at the end and bins of Speed ORZ legos to get some fast fun.</div>
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The really sweet part of lego fest was that YOUR child's creation can go on display! Tommy is a tire freak so he designed a car and LOVED seeing it on display.<br />
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The Lego fest staff were all helpful, knowledgable and FUN! You could request an ASL signor with two weeks advance notice, we didn't, and the entire venue was VERY accessible for our stroller and to find quiet areas for Tommy breaks. </div>
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Liam loved Lego fest and was treated to tshirts, lego sets and hours of fun! Tommy and us parents also enjoyed ALOT! This might be a new tradition. We were the first to arrive to the session and almost last to leave so that says a lot about the fun we had! For about $80 in tickets we even left with many free sets and activities. Thank you Lego fest!</div>
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<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-84383382280829974862013-09-04T08:09:00.003-07:002013-09-04T08:09:47.643-07:00The mediaI started this blog in an effort to keep our extended family and friends up to date on Tommy's 'second' surgery which was a big ol' scary one, open heart surgery for a complete av canal defect.<br />
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But then I kept writing. This was a way to use "tommy's" absent voice to tell a story of his life for a few years.<br />
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That turned into a much easier style of writing, first person, and I've turned "Tommy's blog" into "Grace Unhinged" as a therapeutic (better than wine) writing outlet about our family and me. And our life with a child with multiple disabilities.<br />
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Early in my blog days I only knew of other 'blogging mommas'. But I really didn't see "personal" accounts of raising a child with special needs portrayed very often in national tv, internet, etc. It just wasn't "cool" and probably didn't generate money for corporations.<br />
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But in the past couple of years I've welcomed seeing conversations "normalized" thru the tv show Glee and the tv show "In the Middle", I'm sure there are even more so I need to watch tv more right? Anyway, it's exciting to see a very small slice of children and adults with disabilities on national tv. Topics of inclusion are so natural when we see 'how' life works considering everyone's contributions.<br />
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So, when I saw this as a commercial today during the Today show, while we wait for our first day of school bus, I had to do a double take and look it up on the internet to make sure I just heard "special needs child" mentioned on national tv! And I think this commercial was just perfect, so many subtle topics mentioned here: <a href="http://www.youtube.com/watch?v=MzIg0vw8gNY">http://www.youtube.com/watch?v=MzIg0vw8gNY</a> <br />
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-4711635417286939462013-08-15T21:33:00.000-07:002013-08-15T22:00:58.852-07:00August in Montana<div class="separator" style="clear: both; text-align: center;">
Most of us will be spending the entire month of August on the lake in Montana.</div>
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And sometimes at Glacier Ntl Park</div>
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But most of the time in the water</div>
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And ending the day with a sunset</div>
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Or earning another junior ranger badge</div>
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And kayaking with mom</div>
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My first week in August wasn't spent with my family on vacation in Montana, I was at the UW attending class and learning lots. But when that week was done, I caught a really tiny plane to a fairly small city in MT and promptly starting smothering my family with love. Hannah couldn't join us this year, maybe next! <br />
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This is my 13th year of vacationing on this lake with my hubby's family in their summer home. It's very relaxing! Each year our vacation gets a bit longer until this year it will take up the whole month. <br />
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Nate really likes our morning walks, just him and me for at least one hour and we walk about 4 or 5 miles each day. At 18 years old we get to talk about all things related to his soon to be move to Santa Barbara for school. Nate is my walking current event conversation starter so we had some deep talks on race, Christianity, adoption, and political issues. He has really stretched my head lately, and my heart.<br />
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Liam is loving all things outdoors, especially the lake! He is frequently swimming both with or without his life jacket. He is in our kayak constantly, which puts a grin on my face as it is one more skill and activity he can do to enjoy nature. We've brought loads of library books and movies on vacation so we are reading lots and he likes all the new stories. <br />
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Tommy is an absolute fish in the water! Last year he couldn't really stand being in the lake but this year it's a complete LOVE. He always wears a life jacket and usually has an inner tube with him for fun. His giggle and splashes in the lake make me smile. We continue to do our homeschool summer routine with about an hour a day or a little more devoted to phonics, his little sight word books, math and number sense and lots of literature being read aloud. Tommy and I are using "Pigin" as a more effective way of communicating lately rather than our previous use of ASL. I'll write more later on that topic and the idea of getting our gypsy son a service dog. We are researching the Coltriever breed of service dogs for their ability to alert when paired with people with Alzheimer's or Down syndrome. He continues to keep us on our toys with his wandering ways.<br />
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Colin and I are really enjoying our down time. We purchased a new rv which is much larger than our previous and able to sleep at least 6 people. It has some nice "Tommy proof" features for safety and we've added a few like alarms on the exit doors in case he wants to "exit stage left" when we aren't looking. Our new rv is really nice and will make camping as a family, and bringing grandparents and friends along really easy!<br />
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Stay tuned for more pictures from Big Sky Country!Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-67590121127947611942013-07-16T13:08:00.000-07:002013-08-28T16:25:03.916-07:00We are home from the hospital<div class="separator" style="clear: both; text-align: center;">
Although I've updated our family and friends, and my extended social facebook friends.... I need to update you all! </div>
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Tommy is home!</h2>
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We were discharged from our local hospital after three days inpatient. Although he is not 'out of the woods', Tommy is mending and getting stronger and more recovered everyday! And doing that at home and in sunshine and with lots of love from a family of six.</div>
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Breathing treatments while he is awake during the day every three hours, antibiotics, our beloved probiotics, extra fluids and lots of love!</div>
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Our local hospital did well covering his basic medical needs. I point that out, because we have not had a very good relationship and care when inpatient as a special needs pediatric patient in this hospital. This visit, I even got a chance to talk to one of my favorite long term nurse on the floor (we talked into the wee hours of the morning about building up a community that cares for it's special care kids when they are sick) and she shared that leadership, not the nurses, feel special care peds patients are only a "necessary nuisance" to healthcare in general. Obviously, caring for a child like Tommy is expensive. And even though we have three forms of insurance, the hospital doesn't "make money". The nurses have always been great, but without leadership funding and skilled staffing.... special care needs such as skilled hospitalists and speciality care inpatient peds.... nurses can only do so much to help us. Which then Tommy cannot fully recover his health with only minimal pediatric inpatient care. So after years of letters and meetings with Pediatric inpatient management within the hospital, we came again to an inpatient stay and were a wee bit worried. But the care was fine. It was actually pretty good. </div>
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Here were some of my quick updates to facebook which I'm posting here for my friends across the nation and in other countries. I'm always interested in hearing from all of you with ideas on pneumonia and hirschsprung's disease and the polysaccaride antibody deficiency and how all things "Tommy" might interact because some of your sweet kiddos have the same complexity. I'm fairly well caught up on my emails again so if you send me information, thoughts, love... I'll finally be able to find it! </div>
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Tommy was ill with a cough, no fever, that started with head-to-toe hives.... for two weeks. The cough for two weeks, the hives were only two days, but the hives were the most remarkable case I have seen in my life. The cough then spiked a fever in his body of 104 and a white blood cell count of over 20k. A huge infection had started and his body was fighting with all he had.</div>
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When the fever started, I had already scheduled a 2pm peds ill child visit. But quickly called our pediatrician triage and said I would be going to the ER instead, which they encouraged also. He hadn't exactly struggled for breath up to that moment, which was 9am.</div>
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On the way to the hospital though.... it all unraveled. </div>
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He was secured in his car seat, I was driving.... unfortunately I didn't think to call an aid car....and I didn't think to ask a neighbor to ride to the ER with us. And he gasped, and coughed and tilted his head back....his hands grabbing at his car seat straps to try to breath. </div>
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His eyes rolled back in his head and he could breathe. I could hear him gurggling.</div>
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I was driving almost 90mph down I5 toward our local hospital which is 10 mins on freeway from our home.</div>
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With a child that I didn't think was breathing anymore.</div>
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And I couldn't see him in my rearview mirror because he had slumped and pulled his blanket over his head</div>
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And I was screaming at him</div>
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And using my horn and blinking my lights and absolutely no one driving was accomodating us by pulling over</div>
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When I parked at the ER I pulled Tommy from the car and although he was gray, he was breathing, and clearly hot from the fever</div>
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I ran thru the ER doors asking for a nurse and explaining my child was having breathing trouble</div>
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And from there, the lead ER nurse and a team of doctors helped stabalize his breathing. Tommy was so scared. I kept my voice quiet and close to his ear and told him what was happening. Because although Tommy can't expressively speak, he hears and he listens and he understands! </div>
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I said they are here to help.</div>
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Doctors fix.</div>
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I told the staff that as much as possible, I wanted to tell Tommy what was going to happen ahead of time, and not after it happened. I told him "owie" for shots and gave him time to prepare and understand as much as that can happen.</div>
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I told him I loved him.</div>
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Mommy holds you tight.</div>
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I sang Amazing Grace in his ear, over and over again.</div>
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Massive injectible steroids were given. Which took four people to hold him down.</div>
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He was immediately put on 4-5 liters of oxygen.</div>
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An iv was started and blood draws happened.</div>
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Oxygen saturation that started around 70%, with a gray colored child, gradually rose with those liters to 80%, and literally more pink returned to his skin, and the decision was made not to transport to Seattle, but to stay here locally at our hospital.</div>
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Tommy continued to stare at me. </div>
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To look in my eyes. </div>
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I never cried in front of him. </div>
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But held him and talked to him and rubbed his hands.</div>
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I prayed. I praised. I begged. I bartered. Once again, a miracle was performed by God with all the skilled medicine and staff.</div>
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And we were transferred after seven hours in the ER working hard at getting 'stabalized' to the inpatient floor.</div>
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So here on my updates from fb for our inpatient days, shared here for my blogging friends:</div>
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Tuesday morning:</div>
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Tommy informed me the "extended stay" is booked when asleep his oxygen levels fall ... so one more night at the not-hilton hotel. Lots of good stuff tho today, visit from Gma Sue, he ordered soft serve ice cream and pancakes for breakfast and even played on his ipad today. He was so brave today for a bladder scan and breathing treatments. We hope to be home tomorrow. Mend well Tommy!</div>
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The note above was on our door one morning:</div>
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Tommy's nurses are taking good care of him! After a long night that included an iv failing and two hours to find a new site (only one poke though) plus his respatory care folks and a wee bit of "roid rage" compliments of the prednisone, I rocked him back yo sleep well after 2am. I wondered why labs weren't drawn early but was grateful to see they let the prince sleep. Pediatric nurses rock! </div>
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Tuesday night:</div>
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His smile is back! We've giggled about our secrets tonight: one of us accidentally took the iv out while the other carefully convinced the Dr another wasn't needed, one of us ate 4 cups of chicken noodle soup while the other fell in love with tapioca pudding again, and someone has significant bed head .... okay that might be both of us. Let the last hospital slumber party night begin. We Luvs ya Tommy you keep secrets!</div>
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So, we are home. </div>
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And I'm trying to piece together some time and love with my other three kids and hubby that had been concentrated just toward my lil sick gem Tommy. </div>
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And I'm trying to relax and let God take Tommy's mending in his own time and ways. </div>
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My worry grows thick at times and clouds my vision with a fog of anxiety about the future for Tommy and our family. </div>
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Caring for a special needs child is tough stuff! </div>
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I'm not one to sugar coat that. </div>
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And the last six months for Tommy in his wandering, escaping and now illness has made "down/relaxing/checking out" time slim.... actually non existant. </div>
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So I'm calculating and planning how to nurture all of that back. </div>
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Praising God in the meantime as He is the only physician and one that loves Tommy even more than any of us do, and that's hard for me to remember at times.</div>
Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-41101874602963060292013-07-08T14:11:00.000-07:002013-07-08T14:11:15.764-07:00InpatientJust to keep things interesting this summer, Tommy developed left lung pneumonia and we are inpatient at PeaceHealth on oxygen while his lungs try and heal. There is a lot of fluid on both lungs and his white blood cell count is 18,000. Poor lil guy has an army of infection fighters going.<br />
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We would love prayers for discernment for his care team. If you happen to want to visit for a few minutes, Tommy would love that. Tommy is strong. His body is just so sick. And his weakness for cute nurses is still apparent. <br />
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With mommy and Finding Nemo he is sure to get better! <br />
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-35189803849818873212013-06-13T12:24:00.000-07:002013-06-13T12:24:10.234-07:00School is almost out, so now home summer school, or is it "summer homeschool"We are finally at the end of the school year, one week to go, we are almost done! And looking forward to a different pace during the days ahead. <br />
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Hannah is taking finals at WWU and finishing her freshman year. Nate is taking his finals, Bringham Young Univ virtual class and his WCC Running Start classes and he graduates from high school on Monday night! The twins are finishing up their *sweet* year of kindergarten. A week from now we will officially be done with two soccer groups, almost done with Hannah's coed softball games, and have decided to take the summer off entirely from Tommy's speech therapy at WWU. Hoping that summer is a slower pace.<br />
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Hannah and Nate are both nannying for the summer. Hannah for a family that has three kids. And Nate will be "manny" for our little boys. I'm not sure if the little guys are more excited, or if Nate is, all three boys will have fun filling their daily adventure agenda. Truely, wonderful summer jobs for both Hannah and Nate as they are active and really, sincerely like kids.<br />
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For our small boys we've decided to put together summer learning opportunities so that we could work with them a little, or a lot depending on the weather and lunar cycle (lol), on learning over the summer. Tommy has the great opportunity to repeat his kindergarten experience with the same teacher next fall who is an absolute gem and a new life skills teacher, the last one was pretty fantastic though so I'm hoping his new LS teacher is equally as good. Most importantly though he is going to retain his same paraeducator who helps him learn and access his education, this past year Tommy had two fantastic paras and we are blessed he gets another year with one to help him. Liam will be moving on up to the first grade! As a family we decided one night at the dinner table that both boys would benefit from a summer of small efforts toward increasing their knowledge, and this happens in everday life, but we really wanted to purpose a small curriculum for them to keep their minds growing.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Q8tVm8DyioLjWMqlK-8ArmHY6mKl6MrqSx67M0RZb2pZ5qamVqwvgInbeBWHLMXv0tOjgVPtXpt3Rmt8Wg9tO9Nb43umQsPLhyphenhyphenscgsDK-wwP3aLctQLiWPe1TYuSTmON6cg2SFF6TA/s1600/Logic+model+Liam.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" cya="true" height="154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8Q8tVm8DyioLjWMqlK-8ArmHY6mKl6MrqSx67M0RZb2pZ5qamVqwvgInbeBWHLMXv0tOjgVPtXpt3Rmt8Wg9tO9Nb43umQsPLhyphenhyphenscgsDK-wwP3aLctQLiWPe1TYuSTmON6cg2SFF6TA/s200/Logic+model+Liam.jpg" width="200" /></a>Liam's learning model (starting to make logic models for both boys):</div>
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Tommy's logic model incorporates his entire IEP goals and a few new literacy goals from us and I have far to go with this new type of logic model but I think it will help our family and therapists be more purposeful in the future. I'll incorporate the goals and inputs that WWU gives me for the summer too into Tommy's logic model. And I have lots more ideas on "stuff" to do this summer to keep it FUN and add just a small amount of learning. This is just the start of summer fun and learning. I'll add the final logic models for both boys by summer's end. </div>
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-6688911008380027472013-05-27T09:49:00.004-07:002013-05-27T09:49:51.835-07:00Wha 'da week!<div class="separator" style="clear: both; text-align: center;">
<img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtV412DimbnSBXIedRCDjxw63zv4V8tBgD0_mVYaHsJvYPBGQLDjwO9WFA-AIAYzsINcYyBsFSi4FZxiPHRGleMkoFnpCpGN5Jl9LB3f78K4EKlrTpohn3jLNKKo4sOi6vU3UNic54kQ/s320/tommy+at+playground.jpg" width="320" /></div>
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It's been a week. </div>
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And I'm glad it's over!</div>
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Tommy went from sitting and playing at a playground in Fairhaven on Sunday, to a struggling and frightened child trying to breathe on Wednesday night.</div>
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How does that happen?</div>
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Liam came into our bedroom Wednesday night at 2am saying Tommy was coughing and needed help. So when we walked into the twins' room I saw in the darkness Tommy sitting in a tripod stance with the most remarkable stridor and retractions on the inhales and seal like sounds.</div>
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I scooped him up with one arm</div>
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And headed downstairs and we decided to call for emergency help</div>
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Because last time, I drove myself and him to the hospital, he was blue when I got there and seizing</div>
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So long ago, Colin and I decided we wouldn't let either of us drive ourselves if he had breathing issues</div>
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Because this little guy's lungs will always be compromised</div>
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Long story short, got to the hospital at 2:30 and home again by 6am</div>
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And Tommy could breathe again after injectable steroids and a nebulizer</div>
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And his woody doll for comfort</div>
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Hannah has continued to work a strong program in AA and participate on a softball coed team with all sober and hilarious friends from her program. I haven't missed a game.</div>
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And while she is finishing her freshman year at Western and seeking summer employment she struggled this last week a lot with her mental health challenges. So therapies and medications happened and we just talked and laughed.</div>
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Because it's the realization that we all are fairly broken folks that helps one pick yourself up by your boot straps and keep on walking.</div>
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She is fiercely independent and strikingly resourceful</div>
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But I needed to remind her that in the end she needs to talk and share and be open. If not to me and her friends, then to her Lord </div>
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Somedays, I recognize that eternity will be so much better than this world. And addressing mental health issues in a world that says you should just be fine, is one of those recurring moments for her and I to focus again on eternity.</div>
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Liam is loving the increasingly warmer weather and has spent so much time outdoors he is starting to tan! We've addressed some not so good attitudes and word choices that as he is blossoming at school, soccer and church he is starting to acquire, ahem, and we remind him that he is a good kid and doesn't need some of those 'attention getting' words/sayings/actions. Parenting as a verb is well worth it in the end. He is such a gem. I'm creating a summer curriculum for him and Tommy and will share this next week with all of you!</div>
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Nate has the worse case of senioritis that I have yet to see. He graduates 6/17. And although he hasn't actually been in a high school setting for two years, he is ready to be done with this. He has taken online classes and Running Start at our local community college. High school education just didn't work for Nate and I'm thankful that there was more of a challenging education for Nate at our local college. He finished his senior "culminating project". This is him presenting to our family for the fifth or so time (but who was counting, lol). We projected his slide show on our tv and he practiced the 15 minute presentation. Some kids did stream restoration, Nate's senior project was on the clean needle exchange for opiate users in Whatcom county, "The Syringe Swap". And his presentation was amazing on the public health issues of dirty needles, mental health and homelessness of IV drug users. Did you know it's a near epidemic in Whatcom County? </div>
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Just wanted to show you all how the week ended, with Hannah and I doing crazy photo shoot laughing sessions. Because that's all we need, to laugh at life.</div>
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<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-79946521036615934202013-05-27T09:21:00.000-07:002013-05-27T09:21:36.843-07:00A granny and the Bee Gees song "Staying Alive"This past week has been quite the week. <br />
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With a series of really low, tough stuff, just one issue after the other non stop...<br />
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And only a few good high spots, well, at least 'normal' spots.<br />
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Have you ever had those stretches of just wading thru mud yukky stuff o' life? It's like I was totally minding my own business, comfy and just enjoying life. And then I was dropped into a giant mud puddle with miles until a safe shore. <br />
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I'll share in a different post the "stuff", but really it doesn't matter. It's just stuff. Some small things and some so large I'm not sure they will ever be resolved and I just need to learn how to live with. I love everyone involved but in the end it's just life and everyone survives. After all that's the goal here in life, survive. Ah, let's take a moment to sing the Bee Gee's "staying alive". Andy Gibb I loved you!<br />
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So when Nate and I went to Cornwall church yesterday morning for early service I was really looking to God for inspiration, encouragement .... just a bit of the Holy Spirit offering me a nudge in the right direction. Dealing with this last week really got me down. And when I was handed the sermon notes and saw the title of the sermon would be "Granny".... I just about walked outta that church and drove home to bed. What a lame sermon. Granny? Are you serious? Really? Heaven isn't even going to help me after this week of nail biting and clawing my way along barely scraping bottom. Ahhhh. Well, I decided I could always stay for the sermon and just get some of their delicious coffee afterwards and talk to friends, maybe it's the fellowship I need today, totally writing off the sermon. I'll just stand her alongside Nate and enjoy just being here.<br />
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I was wrong.<br />
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The sermon had everything to do with me. Everything. I wasn't just nudged, I was practically shoved off my chair with the sermon "Granny". <br />
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Jesus continually elevates the unexpected. <br />
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The pastor shared about the story of the widow who probably was greatly disadvantaged in life. And although the bible doesn't illustrate her life "stuff" or "specifics" we know in Mark that she was a poor widow. And that Jesus is always watching over us, especially in the small unexpected moments of "staying alive" parts of life. So the pastor said that Jesus had sat beside the large coffers where believers would bring their monetary offerings. And he saw the widow put in two mites (less than a penny). <br />
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"Jesus sat down.... and watched the crowd... Many rich people threw in large amounts.... this poor widow has put more into the treasury than all the others." Mark 12:41,43<br />
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Hmmm, I work with numbers day in and day out, less than a penny isn't "... more.. than all the others". Slightly confused. But then the sermon expanded.<br />
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The widow loved her Lord and gave "her all".<br />
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Stay with me, don't turn the channel because I started talking about money. It's not about money. It's not about tithing, or offerings of money. That only happens to be sure that our hearts are pointed to him and not to possessions and comforts of this world. <br />
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The story of the "granny" (the widow) is about being set apart and called to give our ALL. <br />
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Love the Lord your God with ALL your heart and with ALL your soul and with ALL your mind and with ALL your strength. Mark 12:30<br />
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Eternity should have my attention. I should give each day my ALL. All of my mind. All of my strength. All of my soul.<br />
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But the truth is I haven't been. I get tired. Really, really tired and just plain exhausted. And not just physically, but in some conversations I just hear the topic and want to turn and walk away. Ugh, too big of a topic for me to address. Or sometimes I feel, gee whiz we have discussed this ten times already and I can't talk about it again. But I need to give it my ALL *especially* when I have had enough.<br />
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"Staying alive" in this life really is about keeping my eyes on eternity. Consecrated so that I can give my ALL. Not being weighted down by the choices of what beautiful clothes to wear during the day, but rather, I really need to call this person today and have that tuff conversation. To purpose to do the work that I know I have been called to do. Mostly around kids with special needs (mental and physical challenges) but in a larger context of helping their families. Volunteering more as a helping parent. Spending more time collaborating on system supports and solutions for families.<br />
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Because it's not a pattern for giving (offering, tithing) but a pattern for my living (giving my ALL).<br />
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I've been holding onto a few things too tightly that have been preventing me from giving it my all. I've been keeping my small amount of evening personal/free time sacred. I've been a bit bitter. I've resented that issues and life stuff keep popping up in front of me. And my feet are just stuck in the mud of life. But during the "granny" sermon I was shoved off my seat to try again to do more. <br />
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At the end of the sermon the pastor shared that their unfinished gym will soon be made into more classrooms for children's church and teenagers. And I realized I'm meant to be involved in how those new spaces will address a continual "life stuff struggle" for lots of families to attend this church.... they struggle with their children like Tommy. A runner. A silent, yet God filled child, who wants to learn more about God alongside his friends. <br />
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So. As I shake the mud from my feet, I'll talk to the church and see if I could collaborate on strengthening a special needs children's ministry with them. And on a separate issue, I'll make a few phone calls to some parents of life skills students this week who might also be stuck in bitterness and resentment about issues and just "life stuff" and ask them if they want to be part of a solution and get over the easy to feel bitterness. Because the "granny" sermon reminded me that I need to give my ALL. <br />
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Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-39644530438807979252013-05-17T17:35:00.005-07:002013-05-17T17:37:25.182-07:00Nate is graduating from high school<div class="separator" style="clear: both; text-align: center;">
Not sure where the past 18 years have gone. </div>
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My oldest son is graduating from high school next month. </div>
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And as we are working on his culminating project, and he is finishing up running start (a program where high school students have the opportunity to take community college courses) he is making plans to attend college in the fall. </div>
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At Santa Barbara.</div>
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That's in California.</div>
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That's a long....long... way from Ferndale, Washington. </div>
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*heavy sigh*</div>
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Nate is my easy going, very smart, incredibly athletic, fun loving, prankster, well read, centered, son. </div>
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And he is going to do *so* well in college in the fall. He has amazing interests and already a list for what to do when he gets to Santa Barbara..... top on the list is purchase a surf board.</div>
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So as he is wrapping up the last few weeks of school, I'm praying every day that God will make the sea smooth in this transition and that Nate will make the transition from high school to college well. Which I believe he has the skills to do with ease! </div>
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Nate I'm missing you tons already! We love you SO much and are always in your cheering section. </div>
Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-15880058289283068842013-05-13T18:20:00.001-07:002013-05-13T18:20:18.506-07:00A very happy mother's day<div class="separator" style="clear: both; text-align: center;">
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I feel closest to God when I am with my family. My hubby, kids, sisters and their families and my sweet parents. A blessed life for sure!<br />
I was served breakfast in bed by four of my guys, my daughter celebrated one year sober, and I spent all day with my parents and sisters.An amazing memory for sure. Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-18968696736980485602013-05-10T19:00:00.001-07:002013-05-10T19:00:28.245-07:00Fire station field trip <div class="separator" style="clear: both; text-align: center;">
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Today was almost 80 degrees! Beautiful sunshine and a kindergarten field trip to the fire station. <br />
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I spent the morning in Liam's classroom and still had plenty of time to catch up with the paraeducators in Tommy's class. Very fun morning!<br />
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Then in the afternoon we took 70ish kindergarteners on a walking field trip to the fire station. It was one of the best field trips! Ever!<br />
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Tommy and I have riden unfortunately in the ambulance a few years ago....and I wanted to "give thanks" to the emts and fire fighters so we made fire truck shaped cookies! They enjoyed them. Of course Liam was so proud of his cookie creations.<span id="goog_665331247"></span><br />
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<br />Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-21911542729359185592013-05-03T12:30:00.001-07:002013-05-03T12:30:13.370-07:00The creamery is open againOnce again we are milking goats and with all that fresh daily goats milk we are crafting tasty and gorgeous cheeses. Nothing better than having a home creamery. Although the work involved is a bit much at times, I'm trying to focus on the fact that we are only milking in the evenings and it is afterall only about five months out of the year that we do this.<br />
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We have added two lovely gals to our herd this year which we were given as "retirees" from the national show circuit. So they have found greener pastures here and have settled so nicely in with the other does. We raise purebred registered nubian goats. We love their high butterfat milk! And their long ears and loud personalities add to the fun.<br />
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Our cheese making has included feta, chevre and will soon expand to farmhouse cheddars this weekend. The feta keeps for nearly a month in it's sea salt brine and we have been enjoying ontop of a marinated cucumber salad. I've been enjoying more than anyone else I think, shy grin. <br />
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The neatest aspect of homestead farming is involving your family in the whole thing. Tommy, scoops grain from a sight word that he is barely starting to recognize "goat food". Nate can easily milk for me on nights after he finishes crossfit class. Colin does all the morning chores for our family. Hmmm, I guess I need more of Liam in this equation! Hannah has even relandscaped our front flower bed recently. Farming is a family affair. Running a creamery brings us just a lil' bit closer.Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.comtag:blogger.com,1999:blog-5296924187048137374.post-86942574295107575902013-05-03T12:14:00.001-07:002013-05-03T12:14:39.014-07:00Where do you work?Last week I was in the sunny and warm state of Georgia. Getting an opportunity to learn from some amazing folks in Public Health. Folks from over fourty states were there to learn about performance measurements and quality improvement. I was blown away by the opportunity to work alongside folks from the Centers of Disease Control as well as public health staff from around the nation. Such an opportunity! My head is full and spinning with great ideas for my local work here. <br />
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Occasionally some of you have asked me "where do you work?" and what do you do exactly? I'm excited to share with you a recently posted document that best describes local public health efforts. It's a long document but chalked full of information that effects your daily life!<br />
<a href="http://www.whatcomcounty.us/health/ch/pdf/communityhealthassessmentfulldocument.pdf">http://www.whatcomcounty.us/health/ch/pdf/communityhealthassessmentfulldocument.pdf</a><br />
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On a personal note, I really enjoyed some "time away" and especially in 75 degree weather! The light rail system in Atlanta is wonderful, for $2.50 I got to ride all day if needed to get to sightsee and explore. Although I was traveling by myself, I really enjoy getting out and seeing places that I might not get back to again. Call me a girl scout! <br />
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I tried "Chick-fil-A" for the first time, ate tooooo much fried chicken with waffles, enjoyed Georgia grown pecans, ate the most tasty ham from homegrown pigs that were only fed a mash of acorns (might try that one year as our homegrown hogs from a couple years ago were so tasty), and a little too much sweet tea.<br />
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I got caught up on my movie watching on the airplane rides. While watching "Lincoln" I had one of the ugliest cries thru about half of that movie. I just want to take a moment to say sorry to that Delta flight passengers. Gee Whiz I lost it in emotions while watching that movie. Nothing sadder than seeing the soldiers spontaneously reciting the Gettysburg address to Lincoln and having a black soldier finish the parts that they had forgotten. I cried so hard I actually was using my cuff sleeves of my sweater to wipe my eyes..... and my nose! I told you it was a big long ugly cry. <br />
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Glad to be back home though. Thanks to Grandma Dorothy! My sweet hubby, our awesome after school babysitter and "big brother" Nate for holding the home front down while I was gone. Just to give you an idea of how bad it was at home while I was gone..... three of them were on antibiotics, two of them only made it to school for two days of the entire week, the dog was even on antibiotics too. Ahhhh. But Grandma Dorothy always seems to keep things running and so naturally steps into my shoes when I need to be gone, best mom-in-love award for sure! She even made a pie while she was here. Thank you!Sandihttp://www.blogger.com/profile/07505776112602533721noreply@blogger.com