tag:blogger.com,1999:blog-233601052024-03-12T22:20:14.653-07:00The Minnesota JuliensStefan, Betsy, Addie, James, and LukeThe Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.comBlogger278125tag:blogger.com,1999:blog-23360105.post-5654733811820738012015-04-30T10:02:00.003-07:002015-04-30T10:02:38.148-07:00Our Chunky Monkey!I am happy to report that Little Lukey Poo is almost 3 pounds heavier. Since having the G-J tube placed about 7 weeks ago, he went from 13 lbs. to 15 lbs. 11oz. He's actually got chunk and fat rolls on his legs! Yippee for a chunky Lukey! <br />
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As I type this message, Luke is in the process of getting his new G-J feeding tube. Instead of a Popsicle stick wrapped with surgical tape, he will have what is called a Mic-Key button. The button is about the size of my thumb and won't have a long tube attached at all times. This means the chances of accidentally pulling on the chord or having it come out are VERY slim. Yeah!<br />
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Thank you for all your prayers! We pray that today's surgery is successful, without complications and that our big guy can come home this afternoon. We pray that Luke continues to gain weight and that he grows developmentally!! As Addie would say, "Dear God, let Luke's brain and body grow big and strong!!" <br />
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Love to you all!<br />
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:) The MN Juliens<br />
<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com1tag:blogger.com,1999:blog-23360105.post-21589188252735837862015-03-21T20:13:00.001-07:002015-03-21T20:13:36.698-07:00At HomeThank you everyone for your prayers this past week. It was a long 8 days and 7 nights that Luke spent in the hospital, and we are so thankful to have everyone back home!! J-tube feedings have been going great. Stefan and I are quickly learning the tricks of a successful tube feeding. <br />
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We would appreciate continued prayers for Luke's tummy. He has been vomiting at least 1 time a day, often 2 or 3 times. I called the on-call GI doctor today and he said this is normal. Because Luke does not have food in his belly, his stomach bile and saliva all mix together and are causing him real discomfort. We were taught to vent or "air-out" his tummy 1 time a day (open his G-tube and just let it drain). That is proving not to be enough. Today I opened his G-tube and vented his tummy 3 times, and he still vomited 2 times. He feels so much better once he is done, we just feel so bad that he is throwing up. We pray that with time we will be able to figure out the perfect venting time that our little guy needs.<br />
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It was fun to have family time together! This morning we did the Epilepsy walk through Upsher-Smith Labs at the MOA. What a great cause, and what a blast! The kids favorites were riding on the rides, walking, eating purple cupcakes, and being able to take home a HUGE bucket of Legos. <br />
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Lots of love to you all,<br />
The MN JuliensThe Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-90244800313457689312015-03-17T08:58:00.000-07:002015-03-17T08:58:55.491-07:00Luke - Post surgeryLukey had a successful GJ-tube surgery yesterday. He went in at 3:45pm and we finally got to see him around 6:15pm. He was REALLY sleepy. We stayed with him until around 9:00pm and went home to sleep and be with the kids. That was a really hard decision, but we knew he was in good hands.<br />
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This morning at 7:00am, Stefan received a call that Luke had had a couple seizures overnight, one of them being a prolonged seizure. They moved him to the PICU on 5th floor. We hurriedly got ourselves ready, Grandpa came over to be with the kiddos, and we raced down to Children's. We were really shaken and feeling a lot of anxiety and guilt over leaving him along overnight. When we arrived, they had just transferred him and were trying to get him stable. <br />
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Already this morning we've seen his new on-call doc, the GI doc gave the okay to start feeding, he had a chest x-ray (everything looks good), and the on-call neurologist is on her way. Seizures have stopped, Praise GOD!!! They have given him an extra dose of seizure meds to put a stop to them, and so far it seems to help.<br />
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As far as Stefan and I can determine, we really believe that this influx in seizures overnight all stems from not having food for the past 42 hours. In the past, he tends to have seizures when he is sick or throwing up his food. We pray that once they start his feeding, seizures stop and are controlled with his regular dose of Keppra. <br />
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With this little jaunt down to the PICU, I'm assuming our stay at Children's has been increased. I am thankful that I am off until next Tuesday, and pray that Stefan will be able to get a bit of work done this week.<br />
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Thank you again for all your prayers, texts, and visits! When we have more info, we will update the blog again! Love you all.<br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-44560142928714924362015-03-16T12:04:00.003-07:002015-03-16T12:04:42.980-07:00A Family UpdateHello Everyone! It's about time, eh? I can't believe it's been almost 6 months since our last update! We've been enjoying the pleasures of family time, that's my excuse. I think it's a good one. :) <br />
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<b>Addie Rae</b> - A sweet, spunky and precocious Kindergartener! She is LOVING school, reading "chapter" books, and enjoys playing with friends at school. She told Stefan the other day that her bus buddy asked her to marry her... Oh the fun conversations you have with 6 year olds! She is the best big sister, and absolutely adores mothering Luke and such a big help. James and Addie love playing together, and he is ecstatic when she gets home from school every day! She has now lost 3 teeth, and has the cutest smile ever. <br />
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<b>James Warren</b> - A curious, active, and tender-hearted 4 year old. He is continually reminding us that next year he gets to go to preschool, then the next year Kindergarten, and then he'll finally get to be as big as Addie. His main goal in life! James enjoys playing all types of sports, but his favorite lately has been baseball with dad. They play countless hours of catch in the house and batting practice in the driveway. He also loves playing with his buddies!<br />
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<b>Luke Walter</b> - aka Lukey Poo is now 16 months old! His favorite things to do are cuddle, have us help him jump in our lap, read books with Addie, and hang out with his brother. Last week, Luke sat up during PT. A huge milestone for him! He used all of his strength in his arms to balance his body in a sitting position!! You can see the progression of pictures below. </div>
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Luke is growing length wise and is now in 9 month clothing, but has
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I took Luke down to Children's on Thursday to his Feeding Clinic appointment. We had them do a swallow study and found that Luke aspirates the majority of his milk while bottle feeding. He seems to do fine with spoon fed solids, but not liquids. This finding confirmed A LOT of the issues he has had the past 3 months. He has been on and off sick for what seems like forever!!</div>
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Because of the swallow study findings, we went to Children's Minneapolis ER right after the appointment. We spent from 2-8pm in the waiting room and in the ER. Luke was admitted that night to the 8th floor. We were originally hoping they could put in an G-tube on Friday, rest over the weekend and go home on Sunday. But nothing moves super fast in the hospital. We ended up not even meeting with a doctor that Friday until 6pm. Luke hadn't been able to eat or drink anything until 6pm, and was VERY hungry. </div>
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He spent the weekend just hanging out in the hospital. He was lucky to spend lots of quality snuggle time with friends and family over the weekend. </div>
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His surgery is set for 3pm this afternoon. He will receive what is a called GJ-Tube. The G-Tube goes into the stomach and J-Tube goes into the small intestine. They will experiment with his feeding the next couple days in the hospital to see if he is able to get bolus feedings (all the milk in one feeding) or continuous feedings (slow-drip throughout the night-time). At this point, we are unsure what type of feedings Luke will need. Selfishly we pray that he is able to have bolus feedings, if not right now, eventually. </div>
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We had been discussing G-tubes for quite some time now. We originally thought it would be nice for Luke to have one for times that he is sick. He has a REALLY hard time keeping down food when he is sick (coughs make him gag, which consequently make him throw up). I think the hardest part through all of this, was finding out that a G-tube was a necessity, not supplementary. </div>
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We are thankful that modern medicine allows a way for our little guy to receive the nourishment he needs to grow. We are thankful for the expertise of all the doctors and the kindness of all the nurses. He has stayed in the hospital on his own overnight, and I so appreciate the nurses' willingness to facetime and let me talk with Lukey before he goes to bed at night. We are thankful to all our friends and family who have come to visit Luke or drop off meals/food.</div>
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The surgery itself takes only 30-45 minutes. Please pray for the team of doctors, for Lukey, and for us. Pray for peace, understanding, and comfort. Thank you all for your continued support! </div>
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We love you, </div>
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The MN Juliens</div>
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com1tag:blogger.com,1999:blog-23360105.post-12734422430770896112014-10-25T18:34:00.001-07:002014-10-25T20:51:09.829-07:00MN Julien Life Update Wow, it has been forever! I looked back through our blog and realized I only updated it a couple times this summer! It's a good thing I guess. It means we've been busy enjoying and doing life. :)<br />
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Addie started kindergarten this fall at Glen Lake Elementary and is in Mrs. Brennan's class. She loves school, new friends, and comes home every night eager to share something she learned. Her favorites at school are recess, Spanish class, math and being with new friends.<br />
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We have had a fun fall season of vehicle fairs and activities: Harley Hopkins,
Minnetonka Vehicle Open House, National Neighbors Night Out and the Chan Fire Station. James and
Addie love climbing around on all the trucks!!<br />
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At the end of August, we were blessed to go on our 4th (?) annual trip up to Lucas & Jessie's parent's cabin. They are such amazing hosts and we always have a wonderful weekend! Highlights were: reading stories in the sauna with Lucas, tubing, playing hide-and-seek, playing with the babies and fishing. :)<br />
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James learned to finally balance on his Strider this September. He had spent a
morning at Grandpa's house, and after an entire morning of riding, came
home confident on the bike. That's all it took! Now he rides that
thing to the park and when we go to get Addie at her bus stop. Addie
was encouraged to try as well, so Grandpa took off the wheels
of a small bike for her to try. She is so incredibly timid, but at
least she is practicing.<br />
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Addie turned 6 this fall!! She had her first friend birthday party and LOVED it! We invited a few of her friends and had a tea party. Grandma, Nana, Auntie Julie, Mimi and Mom all dressed up for the party as well.<br />
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<br />
Stefan and I were lucky enough to go to NY and Boston. Stefan had a work visit on Long Island for a day, so we were able to fly together for a long weekend. We spent 2 nights in NY. I spent 1 day on my own in NYC. I was so proud of myself. I woke up early, caught a train to Penn Station, then hoped on a Bus Tour. I was able to see the 9/11 Memorial (amazing), went on a ferry ride past Ellis Island and the Statue of Liberty, saw the Brooklyn Bridge, Rockefeller Center, Theater District, went shopping, Time Square, ate the best slice of pizza, and had a blast (even though it rained the entire day!!). The next day Stef and I went to the top of the Empire State Building. Breathtaking!! We then caught a train up to Boston to visit Dan and Maari. Boston is a gorgeous city. We had an amazing time and Dan and Maari were wonderful hosts and tour guides! Thanks you guys for a great weekend. <br />
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<br />
This October, my sweet Grandpa Gene went to be with Jesus. We miss him so much already. He was a wonderful man. Heaven gained a gem! We celebrated his life today at his funeral. It was wonderful to gather friends and family, and to be able to share stories of Gramps.<br />
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<br />
<b>Updates on Little Lukey Poo:</b><br />
-Genetics testing all came back
negative, nothing found again. We have a follow-up in December where
they may choose to run another series of tests. At this point, they say
it is a long shot that we will find a specific syndrome. <br />
-Luke
had his first helmet made in July at Gillette, didn't fit. Second one,
in August, didn't fit. Last one, in September, gave him a pretty nasty cut. So...
we were discharged from Gillette and sent down to Children's for a
second opinion. We just met with the team yesterday, and they are going
to give it a try!<br />
-PM&R doctor had him fitted for leg
braces to wear at night. We've only tried them once and he screams in
pain, so I'm not sure how we are going to ease into them. :(<br />
-Luke is now a whopping 13 lbs. 2 oz. Such a peanut! We saw a family at DSW this weekend, and their daughter was 2 years old and only 19 lbs. It so gave me a glimpse of what Luke might look like. This tiny little sweet peanut!<br />
-Meet with the neurologist last week. Stefan and Warren were able to also attend the appointment. Nothing new, he just wants to follow Luke every 8 months to make sure his head is growing and that he is not having any seizures.<br />
-BEST UPDATE: Luke was chosen through Starkey Hearing Foundation and the MLB All-Star game to receive a free pair of Starkey hearing aids. Bill Austin, the CEO, was the one who fit and created his hearing aids. What an amazing experience!!! They are in the ear aids, and work beautifully! <br />
<br />
Little Luke continues to grow and gain new abilities. Thank you again for all your prayers! We are truly blessed. Love, The MN Juliens <br />
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<tr><td class="tr-caption" style="text-align: center;">Addie teaching Luke how to play the piano.</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-85550401478619493322014-08-15T18:55:00.001-07:002014-08-15T18:55:40.168-07:00Summer, oh summer!Where have you gone??? I feel like this summer has just flown by. We had so much fun, but I can't believe it is almost done! :)<br />
<br />
Addie is eagerly anticipating the start of her education. Let me rephrase that, she is excited to use her new lunch box, thermos, play on the playground, make new friends and meet her teacher! She is NOT excited when we explained that school is 9 months of the year, and it goes on until you are 18. She broke down in tears when she heard that part! <br />
<br />
James recent addiction is with climbing, jumping, twisting, and summer saulting (lots of "inappropriate" use of my couches!) His buddy Ben got him watching American Ninja Warriors. Needless to say, there has been a lot very close calls in our house! We are signing him up for gymnastics this winter, and he is ecstatic. He explains to everyone, "Addie gets to go to kindergarten and I get to go to gymnastics!"<br />
<br />
Lukey Poo is almost 9 months old and getting stronger every day! His big news is.... He started smiling again on Monday! He took a 7 month hiatus in the smiling department, but it's back! Deep down, I knew he'd smile again. :) His quick smirk and full smile both light up the room. Addie and James both have witnessed it and get so incredibly excited when he does it! He is also gaining a lot of neck strength. He has a long way to go, but it is so encouraging what we do see! <br />
<br />
Stefan and I are doing well and are excitedly planning our trip to New York and Boston in September. My parents graciously offered to watch our kiddos while I accompany Stef on a work trip to New York. We are going to stay there 2 nights and then take the train up to Boston to visit my brother and his fiancee Maari. Can't wait!<br />
<br />
My sweet Grandpa Gene, Boppa to the kids, was diagnosed with cancer in early July. Prayers of comfort, peace, and strength for my grandpa and grandma during this difficult time would be greatly appreciated. We love you Mimi & Boppa!<br />
<br />
Stefan and I are about to sit down to the movie God's Not Dead! Pretty excited!<br />
<br />
Love, The MN JuliensThe Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-71915244551394586592014-08-03T19:37:00.000-07:002014-08-03T19:37:05.652-07:00Summerland Pictures!<div class="separator" style="clear: both; text-align: center;">
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Annual "golfing in the nude" photo of James!!!<br />
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Great train robbery was AWESOME!!! <br />
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James loved the guns!<br />
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Annual OR picture with Papa.<br />
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Fun time with cousins.<br />
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Sarah, Fergus, and Tess the Mess!<br />
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Mark and Kim's Christmas card!<br />
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The girls.<br />
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Nana and her boys!<br />
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All the ladies in our Italian outfits!<br />
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Family pic!<br />
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Our little sweetie pies!The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-57306679163958088942014-06-26T13:35:00.002-07:002014-06-26T13:35:25.726-07:00Julien Family UpdateSummer is in full swing here at the Julien household and we are LOVING it! Our pool has been the best investment so far. :)<br />
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Addie just lost her second tooth last night and the Tooth Fairy forgot to visit! I have to remember tonight. We had a pretty long face from her this morning, but she took the excuse "lots of kids must have lost their teeth last night" pretty well. <br />
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James is just finishing up his T-ball league. James LOVES t-ball and is learning the valuable lesson of sportsmanship! Addie's reign as 1st base coach lasted about 10 minutes on the first night. She then took me aside and asked if she could be relieved of this duty and said, "The babies need me more!" She is our team babysitter and enjoys going from Elsa, to Nora, to Linc, and to Lukey. She has lots of subjects that love her attention. I just love the fact that Addie adores babies. She is such a natural at it!<br />
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Little Lukey Poo just got weighed again yesterday and is now a whopping 10 lbs. 11 oz. He might make it to 12 pounds before we head to Canada. :) New news, he was just fitted for a cranial cap, and gets his helmet next week! I think I also forgot to mention that he saw his ophthalmologist last week and is now wearing an eye patch 1-2 hours a day, for the next 3 months, to try and help correct his ptosis (droopy eyelid). So, Little Luke will be sporting quite the gear! Hearing aids, helmet and eye patch! Aye, Aye Matey! :) <br />
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Luke is now eating solids 2 times a day and LOVING it. He is doing such a great job. He's only had the not so yummy stuff (peas, green beans, and squash). We'll start the fruits next week. He still is bottle feeding about 5 times a day. I'm still managing to pump 2 times a day as well, but am only getting about 3 ounces per time. Just enough for 1/2 a bottle in the morning and 1/2 a bottle at night. Better than nothing! <br />
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We are excited to head up to Summerland soon! Love you all lots!<br />
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The MN JuliensThe Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-37770027000314548582014-06-11T12:29:00.000-07:002014-06-11T12:29:17.286-07:00Little Luke UpdateSchool is almost out for the summer, which means lots of appointments for Lukey. We've tried to schedule all of them in the next three weeks before we head up to Canada. <br />
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This week week we had a follow-up EEG and appt with his neurologist. She wanted to see if there were any changes since he has been on his new seizure meds. Nothing changed! Our doctor said that is okay news. Best scenario would have been if the EEG drastically improved, but she said worse case scenario would have been if the twitching had gotten worse. So... We will take no change. She increased his med dose and he has another appointment in 2 weeks.<br />
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He has also had a follow-up with his eye doctor. He said everything still looks good, just delayed. He still has ptosis (droopy eyelid) so has to start wearing an eye patch 1-2 hours per day. James is pretty excited for his little brother to be a pirate! He will need to wear this for 3 months and then have another follow-up.<br />
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Today we went over to St. Paul to see his genetics doctor. He now weighs 10 lbs. 3 oz., so he's growing!! She said there are usually 3 possible reasons for microcephaly (small head). First, could be due to an invetro infection, didn't find. Second, could be a chromosome abnormality, didn't find. So lastly, they are looking at his genes and trying to find a possible syndrome. They successfully drew blood today (yeah Children's) and are testing for 2 things: different microcephaly studies and a breakage study. She showed me the cost being billed to our insurance, $5000!!! So thankful for health insurance. We will find out results probably sometime in August.<br />
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I still find myself on the edge of doing okay and having tears. I think the grieving process will take longer than I envisioned. 90% of the time, I'm okay. It's the other 10% that gets to me. I experience it when I am stressed or visiting the doctor. Or when I explain our experience to someone new. It is at these times that emotions come flooding back and the tears start. I have come to terms that this OKAY and that I don't have to feel guilty about being emotional. It shows that I am only human, and this is normal. It also allows me to draw my strength from Him and realize that I cannot do it on my own. I am also constantly reminded at how incredibly blessed I am. My children, all three of them are perfect and such gifts from Him. In this world, we are surrounded by many people that are not able to have children. It puts everything into perspective and I realize that this roller coaster it have been on, will allow me to have more humility, more compassion, and more understanding to people and their circumstances.<br />
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Thank you again for all your prayers!! As of today, I am officially on summer break!! Yeah for mommy days!<br />
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Love, the MN Juliens<br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com3tag:blogger.com,1999:blog-23360105.post-86231914102485705872014-06-01T20:08:00.002-07:002014-06-01T20:08:27.618-07:00Camping - Memorial Weekend<div class="separator" style="clear: both; text-align: center;">
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We had such a great time camping Memorial weekend at Sibley State Park. It was a gorgeous weekend spent with a perfect group of campers. Love hanging out with family, friends, and the dogs! :) Also, what a great day to remember a dear loved one, Aaron!</div>
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The kids missed "tenting" so much, they decided to spend the following 3 days sleeping on the floor.</div>
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Then Grandma got the idea to get out their tent. She set it up in their room as a surprise, and the rest is history. They are going on 7 days of sleeping on the floor for both naps and night time. James usually lasts about an hour, and then I find him in his own bed. Addie toughs out the hard floor ALL night! :) We'll see when the novelty wears off!The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-4550401987949521522014-05-30T04:52:00.001-07:002014-05-30T04:56:13.501-07:00T-ball<div class="separator" style="clear: both; text-align: center;">
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James had his first t-ball game last night! He was so excited he could hardly contain himself. The entire car ride to the field, he kept asking, "Is everyone excited to watch me? Are you just so excited to see my game?" <br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-87978266319545246442014-05-28T14:07:00.003-07:002014-05-28T14:07:57.918-07:006 month check-upLukey Poo had his 6 month check-up today! :) Like the rest of his check-ups, I completely expected him to be sleeping.... but he surprised us all and was wide awake the entire time. It was the first time I heard our doctor say, "He looks happy and healthy, AND what beautiful blue eyes (she'd never seen them open!!!)." I know I don't need the reassurance, but it felt so incredibly good to hear her say that. <br />
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Praises:<br />
-His weight is up to a whopping 10 pounds now!<br />
-He no longer needs to fortify his breast milk bottles anymore<br />
-His head and length are both up<br />
-His spine X-ray came back normal (for the most part)<br />
-He gets to start trying solid foods tonight! <br />
-He started sitting up in the Bumbo seat (with lots of support!)<br />
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Again, I have this overwhelming sense of peace and happiness. I know that I don't need other people to tell me that Luke will be okay, but it sure was a blessing to hear it from our doctor. When filling out his pre-exam form, they ask you a series of milestone questions, and nearly all of them he hasn't reached yet. It's hard to go to a doctor's appointment knowing that your son isn't doing what a typical 6 month old is doing. <br />
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On my walk this afternoon, I realized that's okay. He isn't typical, but I know that he is PERFECT! I am able to have complete faith that God created him exactly the way he is, to do amazing things in this world, AND I get to be a part of it. Thank you God for that blessing!!<br />
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Lots of love to you all! I'll post some pictures soon from our camping trip this past weekend! <br />
The MN JuliensThe Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com1tag:blogger.com,1999:blog-23360105.post-19255041296962468382014-05-22T18:31:00.000-07:002014-05-23T06:06:33.363-07:00Mother's Day, Bath Time, Addie's Graduation & Our 10 Year Anniversary<div class="separator" style="clear: both; text-align: center;">
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Mother's Day at Julie's!! So blessed to have these ladies in my life. :)<br />
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Rub a dub dub, 3 kiddos in a tub!!<br />
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Addie had her preschool graduation today from All Saints Lutheran Church! What a lovely service they put on. Addie has been incredibly blessed to be a part of such a wonderful school. We will miss ASLC, but will see you in a year when James starts!<br />
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Stefan and I have been married for 10 years. We have been so incredibly blessed, especially the gift of our 3 precious little ones. We plan on celebrating just the two of us next weekend, but were SO happy to share the evening with our family! After dinner, we went home and watch our wedding video! Addie and James get such a kick out of it. :)<br />
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We went out to eat after Addie's graduation. Five other families from Addie's class happened to be there. The kids had a blast playing! I'm not sure the waitress did though!! :) Good thing it was a beautiful evening!!!<br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-59687089155645567772014-05-14T18:34:00.002-07:002014-05-14T18:34:32.507-07:00God is SO good!!!!It was 4 months ago today that we found out little Lukey was severely hard of hearing. His hearing loss was at 90 decibels for high pitch sounds, putting him at the severe to profound hearing loss. We were told our first option would be a cochlear implant some day. Our second option was to pray for a miracle. We were told that he had a lot of fluid in his ear, and with ear tube surgery, his hearing loss could increase as much as 30 decibels. Our audiologist said this would be a miracle! <br />
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Well... God is good! Luke and I went in today for his 6 month ABR post-ear tube surgery and his hearing loss is now at 65 decibels, putting him in the moderate to severe range instead. He is no longer a candidate for cochlear implants, and will be able to hear and understand speech with hearing aids!!!!! Praise God! I am overwhelmed and overjoyed by His miracles!<br />
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Thank you for your prayers! Honestly, I don't think I said anything for at least 5 minutes when the audiologist told me the news. I couldn't process it. I had been so consumed with organizing appointments and looking at dates to schedule his cochlear implant surgery, that the news didn't seem real. All I know is I haven't been able to stop smiling all day! Thank you God for your miracles, and thank you for this miracle in our life.<br />
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:) Love, The MN Juliens The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com3tag:blogger.com,1999:blog-23360105.post-31823946749414671712014-05-09T21:21:00.001-07:002014-05-09T21:21:15.389-07:00Preschool Mother's Day, Dentist and Jaime's Baby Shower!<div class="separator" style="clear: both; text-align: center;">
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com10tag:blogger.com,1999:blog-23360105.post-46656360409103016912014-05-06T18:32:00.003-07:002014-05-06T18:36:23.400-07:00Lukey Poo<div class="separator" style="clear: both; text-align: center;">
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Lukey Poo is growing and changing so fast!! It has been wonderful to watch and notice an improvement in his hearing after having tubes put in last week. He now startles to the kids yelling, dog barking, and the piano. It is really encouraging!<br />
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We've had a busy week of making appointments and getting more appointments set-up. This week he has a weight check with his pediatrician, another ear mold appointment (we also get to pick up his new hearing aid - did I forget to mention that Norman chewed his left aid 3 weeks back?), and his 4 hour EEG appointment on Thursday.<br />
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I need to apologize. I reread my post from last Thursday and realized I did not sound grateful. I need to take a step back and focus once again on all the blessings and answered prayers. We had an amazing staff work with Luke last Thursday at his ear tube surgery! Praise God his surgery was a success, he recuperated just great, and was back to his normal self by that evening! One praise! He had gained weight from his last check and is now at 9 lbs. 1 oz. Second praise! His hearing has improved! Third praise! We've been blessed with a beautiful son, who is growing and becoming stronger every day. Fourth praise!<br />
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It is easy to get wrapped up in the negative of things. And, I was completely guilty of that last week. In all honesty, it's been a stressful couple weeks. Stefan started a new job on Monday and it's been wonderful and crazy busy all together. I've had a rough last week and half, where I'm just not quite feeling myself. I put a call in to my doctor and she ran some blood work today. As of now, I'm wondering if my symptoms are chalked up to fatigue. I've been running full steam ahead for 3 months now, and I feel like my body is telling me to slow down.<br />
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All of these are not an excuse though. I look at everything going on in the world right now, and realize how truly blessed I am. May each of us see the blessings God has given us! <br />
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We are continually amazed by your support and encouragement. We love you all so much and pray that God will bless your week ahead.<br />
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Lots of love, The MN Juliens The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-73826200606469272832014-05-04T19:54:00.003-07:002014-05-04T19:54:59.065-07:00Track & Field - 2014<div class="separator" style="clear: both; text-align: center;">
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Just wanted to get some pictures up tonight. I"ll post more tomorrow! Thanks Coach Lovas. The kids had a blast!<br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com1tag:blogger.com,1999:blog-23360105.post-3517572257518756392014-05-01T11:16:00.000-07:002014-05-01T17:06:23.983-07:00Luke - Ear tube surgeryLukey Poo had his ear tube surgery this morning. Surgery lasted all of 10 minutes and he did super well. We are waiting to be discharged as I type. I forgot to mention to the nurse that he was supposed to get an X-ray and they had no orders for it (you'd think I wouldn't have to be the one to remind them, oh we'll). So we are waiting to go down to the lab.<br />
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This morning I had the amazing experience to pray over Luke's doctors before surgery. When I asked, I wasn't sure what to expect. I definitely felt His presence as I prayed. Thank you God for allowing that opportunity to witness and ask for guidance and protection all in the same breath!<br />
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Thank you everyone for your prayers!<br />
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Lots of love, The MN Juliens<br />
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The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com1tag:blogger.com,1999:blog-23360105.post-42915177979167372052014-04-28T18:35:00.000-07:002014-04-28T18:35:06.234-07:00Addie's PrayerTonight, during our dinner devotion, Addie was asking all about heaven. She then asked, "Well if people decide not to believe in Jesus, where do they get to go?" Stefan explained that then those people are separated from God. Addie then said, "Well I certainly don't want that. How do I make sure that I get to be with God in heaven forever and ever?" We said you can ask him in your heart. <br />
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Here was her prayer.<br />
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God, I love you and I want to be with you forever. Please come into my heart so I can go to heaven and be with you. I love you. Amen.<br />
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So sweet!!! The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com1tag:blogger.com,1999:blog-23360105.post-78259742644740534582014-04-24T08:41:00.000-07:002014-04-27T03:13:08.684-07:00Sarah & Fergus visit and Luke update<div class="separator" style="clear: both; text-align: center;">
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James received a sword in his Easter basket. Probably his most cherished present. He has wanted one for the past month, ever since playing with Jacob's sword! He is one happy guy! Last night I found him cuddled up in bed with his sword. <br />
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We had a wonderful visit with Uncle Fergus and Auntie Sarah this past week! The weather was absolutely beautiful, so we were able to enjoy lots of time outside going for walks, egg hunts, playing baseball, going to the park and having a bonfire. :) Thank you Sarah and Fergus for traveling all the way to MN to see us. We miss you already!<br />
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<b>Update on "Lukey Poo"</b><br />
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Weight - For the past 2 weeks we've been monitoring Luke's weight really closely. He hadn't gained more than 2 ounces in the past 4 weeks and it was quite alarming. I went from breastfeeding to exclusively bottle feeding. We've been feeding him a mixture of breastmilk and formula, to try to increase his calorie intake. He seems to be responding to the bottle, extra feedings, and higher calorie in take. He went from 8 lbs. 6 oz., to 8 lbs. 14 oz. in two weeks. She wants him to be gaining .5 oz./day, so he is on track at the moment.<br />
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<u>Endocrinologist</u> - We met with Luke's new endocrinologist last week. It was a lengthy appointment where we discussed anything and everything that might be hindering Luke from growing. The doctor wanted to get blood work done to determine if hormone levels might be the reason. Originally, they needed to do 5 blood draws. This made me quite anxious, as we've had a lot of difficulties holding Luke down to even get 1 good draw. We ended up going in for 3 successful draws. On the last one, they got the okay to draw a large quantity, so we didn't have to go in the remaining two times. Thank goodness! All tests just came back this week negative, so nothing there. Even though that doesn't give us a reason, we are really thankful that nothing is wrong with hormones (as this would have been a daily shot).<br />
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<u>Neurologist</u> - Yesterday we had a follow-up with Luke's neurologist. Our pediatrician and neurologist had wanted another EEG done prior to our follow-up, so we headed down to the Noran Clinic nice and early and Luke had another EEG. He again, was a trooper. Slept through the entire thing, but this time, actually woke up for the flashing lights portion. After, I met with the neurologist and she said there had been some changes in the EEG from last time, more abnormalities (especially when he was in the process of waking up). She wants him to have another EEG in 2 weeks, this one will be 4 hours long!! Not looking forward to that one. We talked about our concerns.<br />
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1. Seizures - there is a strong possibility for an onset of seizures. When you have any brain abnormalities, the chance of seizures is very high. We haven't seen any yet, but do notice leg twitches. She said this could either be seizures or just normal baby twitches/startle movements.<br />
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2. Curve in back - Luke's back is starting to curve. Our PT is not sure if this is due to his head tilt, lack of core muscles, or the possibility of scoliosis. They are going to do an entire body xray next week (it's called a baby-o-gram).<br />
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3. Feeding - His feedings have gone SO much better now that he is exclusively bottle feeding. He happily takes down an entire 3-4 ounces effortlessly. Our neurologist did say if feeding becomes an issue again a feeding tube is a good sort-term solution. Even though that solution seems scary and too drastic, she assured me it is quite simple. Prayers for continued weight gain and good feeding would be greatly appreciated!!<br />
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Next Thursday Luke has his ear tube surgery down at Minneapolis Children's. Prayers would be greatly appreciated! Every time we see a doctor, he gets blood drawn, or someone else pokes and prods, he takes a step backwards in feeding. I get anxious because everyone is watching his weight like a hawk and I sometimes wish we could just be at home, where everyone is relaxed and Lukey eats well. I have to continue to count our blessings in having such amazing doctors in Luke's life and they all want the same thing, to figure out how best to help Luke . I am continually asking God to grant us strength and patience.<br />
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Thank you again everyone for all your prayers, emails, and cards. If I don't get to personally thank each and every one of you, I am sorry. It does mean a lot to us. We are so very blessed and thankful for all the love and support!!! I hope you all had a wonderful Easter!! :)<br />
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Love and blessings,<br />
The MN Juliens<br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-88057488583321210542014-04-15T19:40:00.001-07:002014-04-15T19:40:05.658-07:00Post-dinner Family Time<div class="separator" style="clear: both; text-align: center;">
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Our post-dinner family time tonight consisted of Addie reading to little Luke, while her brother James, "whacked the guys" on the Wii. :) Love it!!The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-3584854288884490352014-04-13T14:22:00.001-07:002014-04-13T14:22:15.199-07:00Dr. Brown's - miracle bottle!!!!To start off with, thank you all for your immediate prayers! Last week was a bit emotional. When we went in for his 4 month check-up, he hadn't really gained any weight in the past month. I immediately knew we were in for another round of tests or something. <br />
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Luke was weighed again last week, but had only gained 2 ounces in 5 days. Our doctor called that evening and explained that she was putting in a referral to see the endocrinologist over at SLP. They then put in for more blood work. This time they need 5 test tubes worth!!!! This means 3 different blood draws. We went in for our first blood draw on Friday and had success on the first poke! Hallelujah!! I told the lab tech, Anna, that we would call and specifically ask for her next time!<br />
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Our doctor called this morning and said that the first round of tests came back normal. They were testing his thyroid, glucose, and hormone levels. I'm not exactly sure what all is a part of the next round of tests, but we are happy that the first ones came back fine.<br />
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As far as eating is concerned, my mom's friend Barb (who is a nurse down at Children's), recommended Dr. Brown's bottles. So far, it's been a miracle bottle! He can down 4 ounces in a record time of around 15 minutes. This process use to take 45 minutes at least and he would never finish a bottle. At the moment, we are mixing formula and breast milk together to make a higher calorie bottle. Time to bulk up Lukey Poo!!<br />
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God has really answered our specific prayers, for Luke to start eating well. Meal time is much more enjoyable for all us, as he happily sucks down his bottle! We have our endocrinology appointment next Wednesday and we will also weigh Luke at this time. His last weight was 8 lbs. 6 oz. At this pace, he'll be able to stay in his infant car seat until he is 2!! :)<br />
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Everyone, thank you again for your prayers for strength! We are constantly reminded of God's love and the love of our friends and family around us. Thank you!<br />
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The MN Juliens<br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-67518071533672398382014-04-09T20:22:00.000-07:002014-04-09T20:22:15.294-07:00Prayer requestWe just got off the phone with our doctor. Little Luke is really struggling to gain weight, and it's causing concern for all of us. He's plateaued on his weight. We've started adding formula to breast-milk bottles and have started topping him off after he is finished breastfeeding. Problem is, he is a really bad bottle feeder. The doctor tonight said we might try JUST feeding by bottle for a day so we could see how much he actually gets. I'd hate to do that because I know he will not get enough! <br />
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The plan for know is to check his weight again next week, but if he hasn't gained weight, then we'll have to look at other options. I'm scared at what they'll want to do. I really appreciate your immediate prayers. Prayers that he feeds really well and that he gains weight! Thank you!The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com3tag:blogger.com,1999:blog-23360105.post-60088251672577317652014-04-09T12:25:00.004-07:002014-04-09T12:25:43.552-07:00Snow & getting ready for Easter<div class="separator" style="clear: both; text-align: center;">
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We had a HUGE snowfall last week. Olaf is pictured above! His face didn't last long. I turned around and Norm had eaten his nose, and both cucumbers were found in James' mouth. :)<br />
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Addie told me yesterday, "I wish I could be the mommy in this house!"<br />
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Daddy time!<br />
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Daddy was in charge of decorating eggs with the kiddos! <br />
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<br />The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0tag:blogger.com,1999:blog-23360105.post-73384365256994758342014-04-03T19:32:00.003-07:002014-04-03T19:32:30.419-07:00Some pics<div class="separator" style="clear: both; text-align: center;">
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My dear friend Katie came for a visit last week. I was her nanny back in the day. The kids and I had a wonderful time hanging out with her. :)<br />
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Lukey Poo and his tongue! It's always seems to be moving!<br />
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Luke is really improving on his tummy time!The Minnesota Julien'shttp://www.blogger.com/profile/03468328026413456288noreply@blogger.com0