tag:blogger.com,1999:blog-42965659468163115892024-02-19T00:37:58.268-06:00Microwaves, Rectangles, and EllenProof that there are positive stories about children with trisomies online!Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.comBlogger279125tag:blogger.com,1999:blog-4296565946816311589.post-15706705766075617312015-11-15T09:31:00.001-06:002015-11-15T09:31:32.420-06:00The year so far...This has been a long year for Jackson. I would think at 11, new diagnoses would be less and less. However, he has been diagnosed with epilepsy, dysgenesis of the corpus callosum, pituitary hypoplasia, growth hormone deficiency, hypothyroid, allergies to pretty much all nuts (it used to just be peanuts and milk). All of this since February. We've added two new daily meds, with the potential of daily growth hormone injections, pending insurance approval. He had 11 teeth pulled, 8 baby, the rest adult tooth buds. The baby teeth weren't coming out on their own, and the surgeon determined they were fused to the jaw bone. Three ED visits for croup and various other illnesses. Whew.<br />
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And, somehow, he's relatively unaffected by everything. All that matters to him his the iPad, Alphabits, music, Legos and the new shoes he got yesterday.<br />
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Object du Jour: iPad, I can hear him in the other room asking Siri to show him a picture of Curious George at summer school.<br />
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Song Du Jour: Radio, Radio by Elvis CostelloWendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-49831994609100503752015-11-11T10:55:00.002-06:002015-11-11T10:58:39.557-06:00Done?I went to the pharmacy at the hospital yesterday to pick up Jackson's prescriptions (only two of the three were ready and I have to go back again today, I hate that parking ramp!) Anyway, the lady in front of me was talking to the pharmacist saying, "We're done! He rang the bell today and we're finally done!" I just stood there thinking, I wonder what that's like to ring a bell and be "done." It made me remember that this life with Jackson is forever, we won't ever be "done." <br />
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The times that I've volunteered for hospital committees and to talk about my experiences as a parent with a child with special needs, I've realized that the hospital often wants to share stories with the public like the one above - This bad thing happened, we fixed him right up and sent him on his way. All done. Its all about the outcome. Our story is that we will be at Children's until he's ready to transition to adult care and we will have another beginning, but never be "done." (I'm not saying that we haven't gotten great care, but there's not a whole lot of interest in saying, we've got these families that have been coming here sometimes a few times a month for 18 years and there's no "done" in sight. That doesn't sell a lot of papers, if ya know what I mean.)<br />
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I wouldn't change things (maybe I would to make life easier for Jackson, but not for myself), but it's been a long 11 years with no "done" in sight. And all told, he's still a pretty cool kid.<br />
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Object du Jour: The box from the Minecraft Lego set. The box is way more fun than the actual Legos.<br />
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Song du Jour: A new feature here on J's blog. He falls in love with a song and we listen to it until I can't take it anymore and he moves on two a new one. Right now it's "Jungle Love" by the Steve Miller Band.<br />
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#endsceneWendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-51154547076697386872015-03-11T18:46:00.001-05:002015-03-11T18:46:59.962-05:00March is Trisomy Awareness Month<div class="separator" style="clear: both; text-align: center;">
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In honor of Trisomy Awareness Month, all of the 4p parents are sporting these cool banners as our profile picture on Facebook. Another 4p mom, who lost her baby girl last year, started a website to raise awareness of trisomy 4p. Each day for the month, she will be spotlighting a new kiddo with 4p. Check it out <a href="http://www.friendsof4p.org/" target="_blank">here.</a> Jackson will be coming up soon! It's amazing to me how much Jackson looks like his 4p brothers and sisters!<br />
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Jackson's new favorite thing. The "in use" sign from the bathroom at school. He loves it so much his aides at school made a copy for him to bring home. His other new big love...watching videos of people getting their casts off on YouTube. The saw noise is getting really, really old. </div>
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Neuro appointment tomorrow. I have lots 'o questions. Here's to hoping I get some answers!</div>
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Object du Jour: See above.</div>
<br />Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-68075446082609896312015-03-08T12:15:00.001-05:002015-03-08T12:15:56.566-05:00A week in the life of J...Wheeee! Because the short EEG in the clinic didn't show anything, neuro wanted to do a 24 hour EEG to see what they could see. The tech came to our house to hook Jackson up and then he got a cool skull cap to wear for the day. I asked the tech if they had one with skulls or flames; he didn't think I was funny. Jackson did surprisingly well with all the leads on his head and the recorder he had to carry around. By the next day, he was ready to get them off.<br />
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Then, a week later, Jackson ended up in the ED for croup. </div>
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At the end of that week, Jackson ended with a fever and throwing up. The next day, we got Jackson's EEG results. They saw too many spikes in his brain that lead to seizures, so they had him start Depakote that day. We will do a gradual increase of the med over the next three weeks and then stop at his needed dose. He will take the medicine for 2 years. In the meantime, we will make a visit every three months to neurology to check his liver and platelet levels. I have a lot of questions for neuro at our visit next week. This poor kid can't catch a break.</div>
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On a positive note, we spent 3 days at the Wilderness in the Wisconsin Dells, which was a much needed break for all of us. The boys got to swim and play and make new friends. I got to sit in a beach chair with a tropical drink and enjoy doing nothing for a change. Jameson made a ceramic coffee mug in their pottery studio. He had a blast. </div>
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Jameson started Sib Shops last month. He loves it. It's a place for siblings of kids with special needs to meet other siblings. They do crafts, bake, have lunch and just chat. I think this will be great for him because it's not always easy having Jackson for a brother.</div>
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Object du Jour: endless garage door openers.</div>
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<br />Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-48942940231064153412015-01-29T07:25:00.000-06:002015-02-11T17:19:47.465-06:00School!<div class="separator" style="clear: both; text-align: center;">
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Jackson just loves school! The pic above is from his speech therapist, J hard at work. I appreciate that J adores school, I don't, however like being woken up at 4 am on Saturdays and Sundays because he wants to go!<br />
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We got Jackson into neurology tomorrow and his EEG will be done right after the appointment. I was told to put him to bed two hours late and wake him up at 2 am. It's going to be a rough night. Here's to hoping we get some answers and that it's nothing to worry about.<br />
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ETA: I woke him up at 2, as instructed. Wow. It's now 7 and the sleep deprivation for both of us is kicking in. It's going to be a long day. Lots and lots of coffee required.<br />
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Object du Jour: Mommy's phone.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-34828621668751721692015-01-23T11:33:00.001-06:002015-01-23T11:33:30.614-06:00Uptown FunkJackson's new favorite (to ad nauseam for me) song. He's pretty sure Bruno Mars wrote it for him because it contains the phrase "JACKSON, Mississippi." <br />
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We had Jackson's IEP this week. I could not ask for a better team for him. We are very lucky in that regard. He's spending most of his day in the regular classroom, spelling like a fiend at grade level, reading at a first/second grade level and navigating the school with less supervision needed than ever. His peers are treating more like a part of the class, helping him when needed and he got invited to his very first classmate birthday party ever!<br />
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At the trampoline park for the party! I thought he would hate the noise, but he loved the jumping!</div>
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On the icky news front, school thinks Jackson may have had a seizure yesterday. Rapid eye blinking, non-responsive, odd noises, lasting about 30 seconds. Talked with the ped who is sending us to neurology for an EEG. Still waiting for their office to call with the appointment time. I haven't seen anything, here's to hoping it was just a fluke thing...</div>
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Object du Jour: 35778 Craftsman garage door opener. Good thing I'm a quick study when it comes to garage door opener model numbers.</div>
Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-30984490979332250972015-01-08T13:08:00.001-06:002015-01-08T13:17:43.837-06:00I'm still here!Wow. It's been a really long time. I find myself spending more time writing on Facebook than I do here. Let's see what I can remember from the last 6 months...<br />
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Jackson turned 10 in July. I cannot believe that. I felt like I was going to be pregnant forever and he's 10. Whoa.<br />
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He started 4th grade. Absolutely loves school, his teachers, his aides and the routine of it all. He gets his daily schedule every morning on a post-it note that he calls "The Square Schedule." He lives and breathes that by that thing.<br />
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The best thing happened this week: Jackson got his first every birthday party invite from a peer at school. It's at a trampoline park. I'm not sure Jackson will love it, but he's going to go!<br />
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No croup episodes (knock wood) so far this Winter. He's gained 5 pounds due to a formula change, maybe that's it.<br />
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I'm continually amazed at how Jackson changes, seemingly daily. He's been more conversational, more huggy, and more interested in food. I was eating some potato chips and Jackson said, "Jackson wants to eat one." (He still talks like Bob Dole, I don't know when we're going to shake that.) But, I was shocked he wanted to eat one. I gave him a chip, he took a small bite and then asked for a bowl of his own. We went to Target a few days later and Jackson saw an endcap of the same type of chips we had at home, marched over and threw a bag in the cart and said, "Take it home." Randy and I looked at each other and then bought the chips.<br />
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Jackson has learned to swear, in his own Jackson-y way. When he gets angry at someone or something, he calls them a Dent. If Daddy tells him no, he's a Dent, if the TV is too loud, it's a Dent. When he's mad at me, I'm a Pub. No clue where those came from...<br />
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Jameson has started first grade, is reading like a pro and missing his two front teeth. He turned 7 last weekend (again, how the heck did that happen?) We spent the day in Chicago at the Museum of Science and Industry and went to dinner downtown at the Rainforest Cafe. Volcano! In this pic, taken Saturday, he still had both front teeth, yesterday the other one went. The Tooth Fairy brought him a super sweet Sacagawea golden coin.<br />
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In June, we got a new (another) cat, Franklin Thunderberry Boogie Wondercat. He's a big black fuzzy guy with a white patch on his chest and tip of his tail. He is the sweetest boy. Jackson uses him for a pillow. We all love him to pieces except Dixie. She's still mad she wasn't consulted on this decision.<br />
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That's all I got for now.<br />
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Object du Jour: Frozen waffles, garage remotes and the iPad.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-44429674387682909502014-07-24T18:23:00.000-05:002014-07-24T18:23:05.189-05:00Here we go again...<div class="separator" style="clear: both; text-align: left;">
Jackson was a summer school on Monday when Randy went to pick him up. As they were walking down the hall with J's aide, "the cough" started and the strider kicked in. Randy calls me, swings by and picks me up and off to the Chateau we go. These episodes seem to come out of the clear blue nothing. One minute he's fine, the next, no air. This time, I was a little more nervous because he was unable to speak in the car. The nurse we had in the ED said she could hear him before we even got through the doors. After the racemic epi and steroids and an almost rebound, he was better. Below is a breathing mask selfie and three attempts at an "I'm going home thumbs-up."</div>
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Genetics follow-up today. Talked with the nurse practitioner about these episodes and she recommended seeing Pulmonary. So, I will make an appointment tomorrow and see where we go from there.</div>
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Jackson will be 10! yes 10! next week! I will post all the festivities after the fact. </div>
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Object du Jour: The 373LM. A Liftmaster garage door remote given to Jackson by his 3rd grade teacher. We don't leave home without it.</div>
<br />Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-69502875360846006492014-05-09T16:43:00.000-05:002014-05-09T16:43:17.357-05:00Wheeeee....J has been a busy boy the last few weeks. Two weeks ago, I was at a PTA meeting at school (I'm on the board, that's a whole 'nother fun story), anyway, Randy comes a bit late to pick the boys up and the meeting has already started. He takes Jackson out of the room and heads down to the cafeteria to get Jameson from the kid's group. A few minutes later, Randy and Jackson appear at the doorway of the library, with Randy mouthing, "I need you NOW!" I come out and see Jackson bleeding like a fountain down the side of his head and all over his coat and shirt. I call the principal out of the meeting and ask her to get me some supplies to clean him up with. She wants to call an ambulance; I just want to see what's going on under all the blood. I get him cleaned up and see a pretty good hole in his head, where he had hit the stairs. He was carrying the iPad and tripped. He had to choose head or iPad, he chose iPad.<br />
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I drive him over to the Chateau because I was pretty sure he would need stitches. The ED was a full house. I've never seen it that busy. Most of the chairs were filled, there were kids crying, bleeding, throwing up in buckets, it was insane. I should checked to see if it was a full moon.<br />
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The initial assessment was that yes, he did need stitches, but we had to wait for a room to open up. We got there at 7:30 pm and they didn't get us back to a room until after 10. Jackson was pretty worked up that he couldn't touch his head on that side because it's the side he tends to stim on. He kept typing, "Blud, hit your head" on the iPad.<br />
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After they finally took us back, Jackson decided to document the process with selfies on my phone.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLJ5keQcV2w7uhi1MEOaVo5t6mF41JxH5Hk30dNN1zpYMVT5w33JnlL3Har_WrMTTInaeWTEJfzdF_5oZ75p_45CWxyqsNdMyXDFCMym6X7_iKTP6YCxGFkz6EFERjz9FTsEAqPaCm21aS/s1600/IMG_4382.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLJ5keQcV2w7uhi1MEOaVo5t6mF41JxH5Hk30dNN1zpYMVT5w33JnlL3Har_WrMTTInaeWTEJfzdF_5oZ75p_45CWxyqsNdMyXDFCMym6X7_iKTP6YCxGFkz6EFERjz9FTsEAqPaCm21aS/s1600/IMG_4382.JPG" height="320" width="240" /></a></div>
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Numbing cream.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV3NejjIxKGgQ9iJEmDhMW93UDLL5EVx58YRX5MH_-e7bqGv_NGo6Yd20vW4iouxMQ3DpDKKYa1GD_zxSPstgsiaKlb26k_uPoEZ4qXPoOQA0U2aN9b2IW6VEPM19XGje2YSI2LU6LBSbz/s1600/IMG_4387.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV3NejjIxKGgQ9iJEmDhMW93UDLL5EVx58YRX5MH_-e7bqGv_NGo6Yd20vW4iouxMQ3DpDKKYa1GD_zxSPstgsiaKlb26k_uPoEZ4qXPoOQA0U2aN9b2IW6VEPM19XGje2YSI2LU6LBSbz/s1600/IMG_4387.JPG" height="320" width="240" /></a></div>
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Bandage to prevent touching the numbing cream.</div>
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Looped on versed.</div>
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Stitching him up!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDygeiYPzJWc-6SG6Q6kJEje-46R_qLUgU5x_9peSSJRB2QXbUzLsipeDdk2pG5T2TL02u_Wb6IKNIonlg-Rv7-RLrAWQOquo4eNt85anN91ngSEuI5c2GaIm3b1KsyrJqJSgqeyuUunmh/s1600/IMG_4409.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDygeiYPzJWc-6SG6Q6kJEje-46R_qLUgU5x_9peSSJRB2QXbUzLsipeDdk2pG5T2TL02u_Wb6IKNIonlg-Rv7-RLrAWQOquo4eNt85anN91ngSEuI5c2GaIm3b1KsyrJqJSgqeyuUunmh/s1600/IMG_4409.JPG" height="320" width="240" /></a></div>
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End result.</div>
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Finally got home a little after midnight. Got the stitches taken out this past Tuesday, which was more traumatic than having them put in. Versed is a wonderful thing, even though he was looped out of his mind and couldn't walk straight. LOL </div>
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Then, on Sunday, "the cough" decided to pay us a visit and we needed to head to the Chateau at 5:30 am. I had to wake up Jameson and bring him along because Randy was out of town for a wedding. Here's how Jameson decided to spend his time with the extra supplies from the mask kit:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZMx7Zsnh0ayN42BE6hICmxJZhFyhgmvvOEcPIdl_wqKdeJDqoh2vXZx0IYAIKMRwfvPUTOuaDfScLRtJONpjLP7UXrOPuDv7PpbMdg0bsSWOGQYBJJKYMlJrnat1PBCtS8MNyVENVUbVi/s1600/IMG_4506.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZMx7Zsnh0ayN42BE6hICmxJZhFyhgmvvOEcPIdl_wqKdeJDqoh2vXZx0IYAIKMRwfvPUTOuaDfScLRtJONpjLP7UXrOPuDv7PpbMdg0bsSWOGQYBJJKYMlJrnat1PBCtS8MNyVENVUbVi/s1600/IMG_4506.JPG" height="320" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeX-k4-VxDFj2D7QSYsoeGwpO2JP3B_MMwja-hzw4_TODnpldhucy9avCNP0lRIAKzseRZevdpOqmo_FwAq-KNOrhWsnrlUyH0Ae7_84l8KzE5cPKrA5vxe1V3_Pk1KvAE3ZoybDYKioMn/s1600/IMG_4509.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeX-k4-VxDFj2D7QSYsoeGwpO2JP3B_MMwja-hzw4_TODnpldhucy9avCNP0lRIAKzseRZevdpOqmo_FwAq-KNOrhWsnrlUyH0Ae7_84l8KzE5cPKrA5vxe1V3_Pk1KvAE3ZoybDYKioMn/s1600/IMG_4509.JPG" height="320" width="240" /></a></div>
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Jameson was also thrilled that the doctor gave him a cherry popsicle at 6 am. Jackson responded well to the meds and we were home by 10 am. </div>
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Whew. I need a nap.</div>
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Object du Jour: The iPad and a huge box of old, old, old garage door remotes that a local garage door company gave to Jackson. It's raining remotes!</div>
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<br />Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-49730014337705900792014-05-09T13:21:00.001-05:002014-05-09T13:21:47.958-05:00That's how we roll...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuSosSwAgeNkvG5HCVfGmmpPUK0KqWYArJlYcKaOZxmee4rParQ1DEIMb0V6qjtUTk8XVgKwMOdSVhMSZYa-SpijQJ3AeTpcuONUSM4XyMUlMBo4YDvZbJY0Cr662f9vvvrOuXGDrMsFE5/s1600/photo+1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuSosSwAgeNkvG5HCVfGmmpPUK0KqWYArJlYcKaOZxmee4rParQ1DEIMb0V6qjtUTk8XVgKwMOdSVhMSZYa-SpijQJ3AeTpcuONUSM4XyMUlMBo4YDvZbJY0Cr662f9vvvrOuXGDrMsFE5/s1600/photo+1.JPG" height="320" width="148" /></a></div>
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This is something I'd never thought I see...J on rollerblades! They rollerblade occasionally in gym class and tried some on Jackson. He did OK with lots of help, but didn't want to talk about it when he got home.<br />
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GI appointment a few weeks ago. Weight and height up, which they are happy about. The team still wants him to expand his food horizons, he will now eat chicken sticks, but that's the only new thing he's added in awhile.<br />
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Trip to Disney World was a success! Jackson went on all the rides he was tall enough for. Some he liked, some not so much. I'm happy he tried them though. We did lose a garage door opener on the Big Thunder Mountain Raiload. That wasn't good. Jackson was howling, we thought it was ride, but it was the remote.<br />
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Object du Jour: A huge box of garage door openers from a local garage door place. So generous of them to let J have them!Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-52635160736065727222014-01-09T14:06:00.001-06:002014-01-09T14:06:54.289-06:00Randomness...Here's some fun pictures from the last month:<div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4WCxDFofynUn7rMPgRj2waeVqsMN-7X_uWMOsqXMuN7RmqTm1lXp9Nv0DB9Y4hom8uJodQfUt9advzocGsXI2ooUO3jYE55JH1Ye8x1VjESXu2eAcYi6kEkJka4hxvoj8NFCo6JN_KwLl/s1600/remotes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4WCxDFofynUn7rMPgRj2waeVqsMN-7X_uWMOsqXMuN7RmqTm1lXp9Nv0DB9Y4hom8uJodQfUt9advzocGsXI2ooUO3jYE55JH1Ye8x1VjESXu2eAcYi6kEkJka4hxvoj8NFCo6JN_KwLl/s1600/remotes.jpg" height="320" width="240" /></a></div>
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Jackson, at Jameson's birthday party at Chuck E. Cheese, he was not happy to be there at first. He kept the hat on during the whole visit and kept a garage door remote in each hand for security. Toward the end of our time there, he was running around and even had fun playing some of the games. It just takes a bit to warm up!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiEeUoVeJ3u8Qr0Rb73nck4MlBDOZBabCzNHN7pJ17sZw1rA1c4OEWlsxA_Gh9cN6ZIzEPO3urJzX2MxJomlHstjXdKwU9B3PwJitu76Fhf-hzWSnhD_ZgpQm0d2D7NOc-YEZ6CGmfDsPD/s1600/gov.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiEeUoVeJ3u8Qr0Rb73nck4MlBDOZBabCzNHN7pJ17sZw1rA1c4OEWlsxA_Gh9cN6ZIzEPO3urJzX2MxJomlHstjXdKwU9B3PwJitu76Fhf-hzWSnhD_ZgpQm0d2D7NOc-YEZ6CGmfDsPD/s1600/gov.jpg" height="240" width="320" /></a></div>
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In December, Governor Walker and his wife, Tonette came to Children's Hospital of Wisconsin to make Christmas ornaments with some of the kids. That's him in the suit, next to his wife in yellow. I'm getting interviewed by a local TV station about what it's like to hang with the Governor. LOL Jameson chatted up Gov Walker about Santa and how to clean marker off of fingers. Jackson wasn't impressed. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9PhtwUJrhyphenhyphencRp4MhwpmD3IvLw3ZvLmGchlz0EpL38gAdCgXVr5dOdgTGekSS2Evr2TxaFiX_Hc-pu-oL_Q1OPBj_iaj_RxESg6e6hJLfoT5lPaueIUmau2iIeufnUAcFnYsdPLee01QYX/s1600/concert.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9PhtwUJrhyphenhyphencRp4MhwpmD3IvLw3ZvLmGchlz0EpL38gAdCgXVr5dOdgTGekSS2Evr2TxaFiX_Hc-pu-oL_Q1OPBj_iaj_RxESg6e6hJLfoT5lPaueIUmau2iIeufnUAcFnYsdPLee01QYX/s1600/concert.jpg" height="239" width="320" /></a></div>
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This picture cracks me up. It's Jackson at his Christmas concert at school. I was hoping he wouldn't see me, but we were in the second row. He's trying to plug his ears and chew on his fingers at the same time. He kept yelling, "Mommy, get the iPad." So much for singing!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5vCpIDF_QtmFzp2EGo4Oxlw5yd-CTDF5rsNGDgWBLNg63SfWuzJsj8_RzpTLu7DWTFrXHm2GgmcoLvbLXAjeI4Mi8x-khQmC4cprPqMfp4-f98LgMeze1v7H_NzdOIWJLdFlZcxmrIb-5/s1600/carb.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5vCpIDF_QtmFzp2EGo4Oxlw5yd-CTDF5rsNGDgWBLNg63SfWuzJsj8_RzpTLu7DWTFrXHm2GgmcoLvbLXAjeI4Mi8x-khQmC4cprPqMfp4-f98LgMeze1v7H_NzdOIWJLdFlZcxmrIb-5/s1600/carb.jpg" height="320" width="240" /></a></div>
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Every year Jameson gets to pick where he wants to eat for his birthday. This year, all he wanted was crab legs and onion rings from Hooters. We're classy like that! He was very happy!</div>
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Object du Jour: Garage door remotes, he just got a Stanley in the mail from Aunt Donna today, can't wait to see his face when I pick him up from school!</div>
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Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-65840776644894771512013-11-29T08:59:00.000-06:002013-11-29T14:45:36.841-06:00Croup....with a twist.I sing this to Jackson all the time: Ain't no party like a Jackson party, cuz a Jackson party don't stop! He thinks it's hysterical, but it's oh, so true.<br />
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Friday night, as I'm putting the boys to bed, Jackson kept saying, "Does your say hurt?" Say = mouth, cuz you say stuff with it. He's so darn literal. I looked at him and he seemed fine. At 1 am, I heard "the cough," by 1:30 we were bundled up in the car heading to The Chateau. <br />
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We check in, they take us back and begin the questions. It's frustrating sometimes because med students are looking for something a little more exciting than croup. I know it's the ER, I know they have to cover their bases, but I've been through with Jackson more times than I can count. I told her it's croup, he needs a racemic epi and decadron. This particular student was convinced Jackson was choking on something. She even brought in another person to hold him down, so she could dig around with a tongue depressor. When a foreign body was not found, she left without a word and a nurse appeared with a racemic epi and decadron, aka the "Mr. Steamy."<br />
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The nurse was wonderful and this was the first Mr. Steamy that didn't cause Jackson to cry, scream, thrash or burst blood vessels in his face. He calmly sat and played with the iPad and let Mr. Steamy do his job. I think Jackson finally, finally understands that the breathing treatment makes him feel better.<br />
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Here comes the twist: ready? We are now in the 3 hour holding pattern that comes after a breathing treatment, waiting for the rebound that leads to hospital admission. As we're sitting there, I'm watching a show about JFK and Jackson's playing with the iPad, I'm absentmindedly petting J's head. I feel a huge squishy spot. He doesn't react, so I didn't think it was hurting him. I continue poking around and realize the spot is pretty big and I remembered he had fallen a week before. I slowly start to panic, I'm overtired and my head is going to the worst case scenarios. <br />
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The doctor comes in to check on J's breathing and I ask him to feel the squishy spot. He says, "Well, that's not right, I think I feel a ridge, we have to scan him." I ask what that means and he explained that a ridge could be a skull fracture and the squishy spot is probably a hematoma, but if any of the membrane is coming through the ridge, he will need surgery. I'm now in official panic mode. Go in with croup, come out with a skull fracture. (Where's that med student now, huh?)<br />
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We attempt to do the CT scan which sends an overtired, hopped up on meds 9 year-old into uber panic mode. ER doc tells us since the rebound hasn't happened, we can go home and call ped on Monday to get an order to do the CT scan under sedation. We couldn't sedate him at this time because of the breathing issue. So, now I get to worry two whole days before I can call the ped.<br />
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I call the ped's office, she's off this week, so they give me to another ped. They send an order over to the hospital, but they can't get us in until Wed, two more days of worry for me. The doctor calls me Monday and basically talks me down. She was fantastic. She didn't think there was a fracture because Jackson wasn't having any odd symptoms. She also didn't want to sedate him because she was worried about any adverse reactions he may have.<br />
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Wednesday morning, we get to radiology and walk into the room where the CT scan is and Jackson starts to panic. They ended up having to put a collar on him, velcro him to the table and velcro his head down. Looks like fun, huh? I haven't heard him scream like this before.<br />
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The three girls that helped us were really fantastic, they kept him calm (as best they could), told him everything they were going to do, and were great with Jameson. Luckily, even with all the screaming and attempts to bust out of the velcro, they got a good enough picture to send to the radiologist and the ped.<br />
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The ped called a few hours later and said that she didn't see any evidence of a fracture. Whew!! There is still a large hematoma between his scalp and skull that will take several weeks to go away. She also said that when the blood starts to clot in there, it will get hard and that if we feel lumps, that's normal.<br />
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Alls well that ends well, right? Like I said, "Ain't no party like a Jackson party, cuz a Jackson party don't stop!"<br />
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Object du Jour: Lego sunroofs and the iPad.<br />
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P.S. Then this happened. Who needs turkey when you have a big ball of green playdoh?<br />
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Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com1tag:blogger.com,1999:blog-4296565946816311589.post-86055938351296595842013-10-29T12:16:00.001-05:002013-10-29T12:34:47.521-05:00The Liftmaster and Doc Brown<div class="separator" style="clear: both; text-align: center;">
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So, here's pictures from the Fall Dance at school. Jackson was a Liftmaster garage door opener and Jameson was Doc Brown from Back to the Future (note the pocket of plutonium!) <br />
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I had no idea how to make a Liftmaster costume, but it got Jackson's seal of approval and that's all that matters! We went trick or treating last Saturday, and instead of saying, "Trick or treat", Jackson would say, "Liftmaster garage door opener." I think he was really hoping someone would drop one in his bucket.<br />
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I'm procrastinating prepping for a talk I have this afternoon to OT students about what it's like to be a parent of a child with special needs. I was reading through my materials and I usually show the class a poster from the Human Genome Project that lists conditions linked to specific chromosomes. I was reading through the 4, and the heart condition Jackson was diagnosed with this summer is linked to the 4th chromosome. Why does that blow my mind? I don't know, but it does for some reason.<br />
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School has been going well for both fellas so far. Jackson loves school and misses it on the weekends. He's doing advanced spelling tests because he's so darn good at it. Maybe he could be a professional speller one day. I'm really proud of him.<br />
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The last pic is our new family member, Dixie, who joined us in April. Our last cat, Tigerlily, passed away earlier in the year at almost 15 years of age. We adopted Dixie from MADAAC, which is Milwaukee's animal control. They guessed her to be around a year old and she couldn't be sweeter. The boys love her and she's really patient with them. I got the naming rights and I named her Dixie after Daryl Dixon from my favorite show, The Walking Dead. Explaining to Jackson what happened to Lily was very difficult. All he knew was one day she was here and the next she was gone. He still asks for her occasionally.<br />
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Object du Jour: Lego sunroofs. He sleeps with them on his thumbs and if they fall off, he wakes me up to find them.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com2tag:blogger.com,1999:blog-4296565946816311589.post-15414198878184153852013-09-03T17:12:00.002-05:002013-10-29T12:17:48.926-05:00First day of school! Today was the first day of Kindergarten for Jameson and 3rd grade for Jackson. J was a bit nervous and cried a little. Jameson marched right in there without issue.<br />
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We did decide to take Jackson out of school a bit early because the Milwaukee Brewers have a Community Foundation that raises money for different groups throughout the city. They raise a lot of money through their 50/50 raffles at the stadium. They held a press conference today to celebration raising 5 million dollars! The conference was held at the Miracle Field where Jackson has played ball for the last three years. After the talking part, which Jackson was not so thrilled with, the players played a quick game with the kids. We got to meet, take pics with and get autographs from catcher Jonathan Lucroy (l), pitcher Marco Estrada (r) and pitcher Brandon Kintzler (c). That's J in the red glasses next to Brandon Kintzler. Such a fun day!<br />
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So, we have J's first full day of school tomorrow! Jameson said he liked school and had a lot of fun today. He was very excited to be able to eat hot lunch at school. We've been practicing his pin pad number for weeks, so he could get his lunch today.<br />
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Object du Jour: The iPad.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-78568593095298451992013-07-22T10:33:00.002-05:002013-07-22T10:39:37.323-05:00No archery on the playground!So, the boys go to summer school. Jameson is taking an Intro to Kindergarten class and Jackson is just taking the same thing he does every summer, just to keep him from losing skills. <br />
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Jackson loves to walk along the side of the building reading all the signs along the side of the school. "No archery on the playground." Really? It's that much of a problem they need a sign? Anyway, Jackson gets to the door that Jameson goes in and tries to skittle in with the rest of the potential 5Kers and the teacher says to Jackson, "Don't worry, you'll be in Kindergarten soon enough!" Um, he'll be 9 in a week and in third grade in the fall. I just see Jackson as Jackson and sometimes forget how the rest of the world sees him. Most of the kids in Jameson's class are taller than Jackson. <br />
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Jackson's new aversion...baths. He used to love playing in the bath and it was a challenge to get him out. Now he screams and hits his head saying, "Don't want your hair wet." Baths are now a quick dunking to get the dirt off and that's it, and even that is a battle. I'm also not allowed out of his sight. He follows me from room to room saying, "Mommy, sit on your butt." In order for him to be content, I have to be on the couch or in the computer chair or he screams and cries and hits his head. This makes it very challenging to get anything done. That appointment with psych can't come soon enough. I just don't know how to handle all of this. I hate seeing him so worked up, but I can't spend the summer on the couch. <br />
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Off to go get them at summer school.<br />
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Object du Jour: A Lego sun roof. J found a picture of a Lego sun roof while he was Googling Legos and became obsessed. I ordered some from ebay. He's been carrying it around and sleeping with it since they day I gave it to him. Thankfully, there were several in the lot I ordered, so when he eventually loses this one, (and he will) I have backup.<br />
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<br />Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-22534763095724183562013-07-19T09:35:00.001-05:002013-07-19T14:49:38.905-05:00Jackson's HeartMet with the cardiologist. He was very nice and very comforting. He wanted a repeat EKG, just to check things out again. Jackson wasn't so happy about that part, but he let the tech do what she needed to do.<br />
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Then the doctor came in and explained what "prolonged QT interval" is and what it does. It is usually caused by medication or genetics. He asked a lot of questions about how people in our families died and wanted to know if there were any unexplained deaths at younger ages. I couldn't think of any on either side. He explained that this disorder causes sudden death and will often be dismissed as something else, like if there's a car accident caused by the heart issue, it may just be blamed on the accident. Nope, not scary at all. <br />
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Dr. G explained that Jackson does have prolonged QT interval, but feels it's a borderline case. He feels that because there's no family history of it, that this may just be how J's heart beats. He doesn't want to follow him regularly, but wants us to come back if Jackson ever faints or has a seizure. I'm relieved, but still have a bit of worry. <br />
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Here's my teeny little boy covered in "square stickers."<br />
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Object du Jour: Shapes and the iPad.</div>
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PS We got the bill for J's tooth extraction...6,100.00. Thank God for insurance.</div>
Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com1tag:blogger.com,1999:blog-4296565946816311589.post-37719663245400871752013-07-10T17:07:00.001-05:002013-07-10T17:20:56.325-05:00The PancakeAlrighty. So, Jackson's been a busy little bee the last few months. He's been to Disney World, finished second grade, started summer school, had a sleep study and been checked out by gi, ortho and physical medicine.<br />
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Disney went way better than I could have hoped. I was really concerned that it would be way too much stimulation for him. He was leery at first, but DW has this nifty little thing called a Guest Assistance Pass. This isn't a go to the front of the line pass, it allows the holder and family to use Fast Pass lines on rides that have them. With the pass, we waited 10-15 minutes for a ride, rather than 2-2 1/2 hours in the regular line. We took Jackson on most of the rides he was tall enough for. For most of them he just sat with his fingers in his ears with very little reaction. He loved the Toy Story ride at Hollywood Studios! He was also super fascinated with the characters. The character breakfast was wonderful. The characters sat with Jackson and let him touch them as much as he wanted. The pic above is J checking out Jake's hair. Jameson is now totally obsessed with Tower of Terror (we now own the movie with Steve Guttenburg, yes, there's a movie, go look it up!) He wants to build a hotel in our front yard and fund it with a lemonade stand by charging 11.00 a cup. <br />
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This school year was awesome for J. He's reading and spelling more than ever. It's really incredible. We now have arguments in spelling. LOL Unfortunately, he will have yet another special ed teacher next year. His fourth in four years. I'm really not happy about this, but what can I do? At least his wonderful aides will be the same.<br />
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GI and I came to a decision. We aren't going to work toward advancing J's eating skills. We both feel that he's plateaued in that area. We will just continue with the tube feedings and allow him to eat whatever he will take. Still mainly dry, crunchy things with an occasional Sunbutter sandwich or piece of toast thrown in. I'm strangely at peace with this decision. It just got so tiring fighting with him over every bite.<br />
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Jackson's PT was concerned about his hips and hamstrings being tight. We made an appointment with ortho who did an x-ray on his hips and found that structurally everything is good. The tech put a little rubber circle she called a "pancake" over his privates to protect them from the x-ray. He promptly started yelling, "It's a penis pancake!" I'm just waiting until he busts that one out while waiting in line at Target. Ortho sent us to physical medicine to get the hamstrings looked at. This doc felt that we need to do some stretching and then come back in 2 months and see how things look. At that time, he will make the decision on whether or not J will need botox injections to loosen up the hamstrings. Time will tell.<br />
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J's super fun new skill is hitting himself in the head. He's been doing it for the last 3 months or so. It's when he happy, mad, frustrated, excited, etc. He will hit himself with toys or shapes and I can't get him to stop. He's now progressed to banging his head on the wall or floor. I consulted the GI beh psych, who recommended we see another pysch at the hospital for help. That appointment is coming up in a few weeks and it can't come soon enough. He often will let out blood curdling screams when frustrated while he hits/bangs. This goes over really well in Michael's when everyone turns around to stare at you and your child and then glare accusingly like you've been beating him. Or so I've heard. He started doing it regularly at school too, the last few weeks before summer break. They tried putting the aide's bike helmet on him and it helped a bit. I didn't want to have him in a bike helmet all the time, so I put a Brewers cap on him. He's now been wearing it for almost 2 months straight and even sleeps with it on. He wakes me up in the middle of the night if it's fallen off. Fun.<br />
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The last, and most fun, thing J did was a sleep study to see what's going on with him. He takes up to 2 hours to fall asleep, wakes several times a night and is up some mornings by 4. Yay. They had us bring him at by 7 at night, wired him up and then monitored him the whole night while he was sleeping. He was not the least bit happy with all the tape and glue and wires. The results showed he got a good 5 hours of sleep with one hour spent awake just lying in bed. They didn't see any sleep issues or apnea, so the general thought is that the sleep issues are behavioral. Yay again. They said they will work with us to resolve this. <br />
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The sleep study did find two things. One, he's a heavy mouth breather. This we already knew. He has a small lower jaw and smaller airway, so he's been doing this forever. They suggested we take him to ENT, which we already have, so we will just monitor him. Two, the EKG run during the sleep study showed a heart condition called "prolonged QT interval". This I was not expecting. They sent us to the heart center to have a full blown EKG done to see what that showed. More of the same. So, we now have our first appointment with cardiology on Friday. I consulted Dr. Google, which never seems to work in my favor, so I'm just going to wait and see what the doctor says. Scary, but we will take it as it comes.<br />
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Object du Jour: The iPad, which he dropped on cement over the weekend and cracked the screen. It still works, thank goodness.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-86280369357591072892013-06-28T08:00:00.003-05:002013-06-28T08:00:25.362-05:00Well, it's been 6 months!Slacker, slacker, slacker! I promise I will write a nice long post later today. J has been a busy bee since the beginning of the year!Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-13168928410110296992013-01-17T10:54:00.001-06:002014-05-09T13:16:53.968-05:00Buh-bye evil tooth.Poor Jackson had his oral surgery last Friday. A molar was sideways and blocking the two teeth behind it. When we got to the hospital at 6 am, he didn't know exactly was coming, but he knew it wasn't good. He cried while we were in preop and kept asking to go home in Daddy's car. The nurse was wonderful and attempted to calm him the best she could. <br />
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We were in a room with a sliding door like a patio door. Every time the nurse would leave, she would leave the door open a crack. Jackson would run over and try to escape. His head fit, but his shoulders didn't. He would stand there with his head out the door howling, "Wanna go home in Daddy's car!" People walking by would either laugh or give him a sad face.<br />
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After the vitals were taken and a million questions answered, out came the versed. Jackson was instantly relaxed (or drunk, depending on how you look at it). He kept spelling dentist over and over again and singing Take Me Out to the Ballgame. The anesthesiologists came in and asked me what he was saying. They were really surprised he could spell. Jackson surprises so many people with what he can do!<br />
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They were then ready to take him back. The lead anesthesiologist carried him because they were afraid that he would try to jump off the gurney. The nurse with her said she just wanted a cuddle.<br />
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After about 45 minutes, the surgeon came out and said that the troublemaking tooth was out. She had to pulverize it because it was so impacted. She said she put in a few stitches to help avoid a dry socket. I was really relived he did well.<br />
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The regular dentist came out a little while later and said they finally got a full set of X-rays and we would discuss them at his next appointment. While they were taking the X-rays, he lost a a baby tooth. So, two for the price of one. He also had some "trauma to his lip" she said. Turned out to be a slice along his bottom lip. <br />
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They took me back to see him and he was sobbing and coughing that croupy cough. Every time he is intubated, he ends up with airway irritation. The anesthesiologist gave him some steroids, just to be safe. <br />
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Poor guy kept saying, "What happened to Jackson?" His bottom lip was huge and he was very, very angry about the iv in his hand. They wouldn't let us go until he drank something. He finally took some water and we got to go home around noon.<br />
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The next day his cheek was huge and he had a big bruise on the back of his hand. Tylenol 3 helped keep his pain under control and he went back to school on Monday.<br />
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Hopefully, there won't need to be anymore teeth taken out after the X-rays are reviewed. My guy is such a trooper. I have some pictures to post, but I can't figure out how to do it on the iPad.<br />
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Object du Jour: he's back in love with the iPad after a short hiatus.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com1tag:blogger.com,1999:blog-4296565946816311589.post-13561153584168799272012-12-09T20:56:00.000-06:002014-05-09T13:17:46.589-05:00The Tooth and Nothing But the Tooth.So, the day has finally come that we need to take some dental action on J. We've been going back and forth with the Dental Clinic at the hospital about what we should do and when we should do it. It's been difficult attempting to move forward because the residents change every 18 months or so and each one has had a different opinion about what to do with him. (I personally think they were a little afraid of his diagnosis.)<br />
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The one we are currently seeing has been the most proactive, mainly because she wasn't sure what the heck to do with Jackson and called in the attending for backup. <br />
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We attempted to get a panoramic x-ray of Jackson's head, which requires a machine to swing around J's head while he keeps his chin on a bar, while biting on a stick, while remaining perfectly still...<br />
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Then we took Jackson to the room with the x-ray machine in it. He flipped and didn't want to go anywhere near it. Jameson wasn't have any part of the "be a good sport and show your brother how to sit here and you will get a sticker." We ended up putting Jackson on the stool, Randy held the back of his head, I held his hands. The dentist would position his head and then dash out of the room to push the button. (This was all while we wearing lead lined suits sufficient for a nuclear meltdown.) As the machine moved around J's head, Randy had to quickly move his hand, wait for the machine to move and then grab J's head again. <br />
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After a few attempts at this (each attempt was uglier than the one before it), we got a few blurry pics of one side of J's head. The dentist felt that one tooth was problematic and sent us for an oral surgery consult.<br />
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The oral surgeon's office is not at Children's. It's in the complex across the street. Jackson did not like the change of venue. The whole time while we were waiting for our appointment, Jackson howled, literally howled, "Take you downstairs!!" The other patients in the waiting room glared at me. At least the staff was sympathetic and tried to buy his affections with toys from the treasure chest. I now have a purse full of rubber dinosaurs that he could not care less about.<br />
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The surgeon was nice and the assistant stayed in the room with us during the visit to distract Jackson while the doctor talked to me. His take on the x-ray was that tooth #20, a molar, is coming in sideways and blocking the teeth behind it, so it's got to come out. The procedure will be done in day surgery with J totally under anesthesia. While he's out, they will get a full set of x-rays, to see what else needs to be done. The first dentist we saw was slightly concerned that J's permanent teeth haven't come down yet, and if they aren't down by the time he's 9, they may have to manually bring them down. That totally squicks me out, so I can't think about that now.<br />
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So, he's scheduled for a heath and hx physical next week with the ped, then a desensitization dental visit on the 20th. First week of January a "high-risk anesthesia" consult and then surgery on the 11th. Yikes. Poor guy. He's going to miserable, but at least I got them to wait until after Christmas, so he's not miserable when Santa comes.<br />
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Object du Jour: The Target flyer. "What the word say?" He then copies the words onto his Magnadoodle. Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-84588803888490117532012-11-30T09:40:00.001-06:002012-11-30T09:40:56.572-06:00The FugitiveWhoa, two in a row! ;)<br />
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A few weeks ago, I decided to make some lovely chicken and wild rice soup for dinner, but I needed a few things to make it. Luckily, we live within walking distance (half a block) of a wonderful little grocery store. I grabbed my shopping bag, Jameson wanted to come too, and off we went. Jackson stayed behind with Randy.<br />
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We got what we needed, paid and walked past the courtesy booth on the way out. I hear the cashiers talking to a child, saying, "Is your mommy shopping in the store?" And I thought, "How sad, someone's kiddo is lost."<br />
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Jameson and I walk down the street toward home and see Randy and a lady I didn't know running up the street. Randy yells, "Do you have Jackson?" I said, "No, why?" I could feel the panic starting to rise in my chest.<br />
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Turns out Jackson decided he wanted to come with us and opened the door and left on his own. The woman with Randy found Jackson walking down a very busy street toward the store. He was barefoot, naturally, because what story do you hear like this on the news actually shows a child fully clothed? The woman thought that Jackson had left the store, so she took him into the store and then went walking down the street just in case that's not where he came from. That's when she ran into Randy who had realized the door was open and Jackson was gone.<br />
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I went running back into the store and see Jackson still behind the courtesy booth playing with the phone (maybe trying to phone home?) and the two cashiers still pumping him for info and attempting to get him to take a sucker. I immediately burst into tears, Jackson looks up at me like, "Hey Mom, this phone is pretty cool, but these chicks won't take no for an answer on the sucker."<br />
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The cashiers tell me that they had to call the police because they didn't know when Jackson had come from. They knew him because we live half a block from a pretty cool grocery store, we're in there almost daily, they just didn't know where we lived.<br />
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The officer shows up and starts asking questions, name, rank, serial number, how did he get out, when did you know he was missing, how did he not know to leave, etc. Then the kicker, "You know, you picked a really bad time of day for this to happen." Really? Really? I made a mental note to talk to Jackson later that escaping earlier in the day would be more convenient for the PD. Because to the average person, Jackson looks "normal" the officer kept questioning about Jackson's special needs like he almost didn't believe us. Why would I lie about something like that? Then, Jackson had had enough and starting stimming at full volume. DIT DIT DIT DIT while bucking to get down in Randy's arms. The officer looked very uncomfortable and abruptly ended the interview.<br />
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We got home and all that *could have* happened started running though my head. What if he would've been taken? What if he got hit by a car? And on and on. I haven't cried so hard for so long in my whole life. <br />
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I immediately ordered a tag for Jackson's shoe that has all of his important info on it from roadid.com. They make great products that are reasonably priced. (Unfortunately, he won't wear a wrist or ankle bracelet, too sensory and the shoe tag wouldn't have helped a barefoot child...) But, he's got it on at school and whenever we are in public, so if he makes a break for it, he's branded. Randy made a visit to the PD to talk to them about our situation with Jackson and their response was, "Um, well, I guess just call us if you lose him again." No preemptive action available. I know other cities have some programs in place and I've been looking into more info on them.<br />
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So, that was the scariest day of my life. Even more scary than the day we got Jackson's diagnosis. Big lesson learned in a big way.<br />
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Object du Jour: Plastic shapes and letters.<br />
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Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-56106823294865719572012-11-29T12:24:00.000-06:002012-11-29T12:24:05.920-06:00I'm baaaack!I realize it's been awhile since I posted. I just needed a little break. Parenting itself is a challenge, but with a kiddo like Jackson, there are days I feel like I'm at my wit's end. But, then he goes and does something totally amazing and it's worth it.<br />
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Where to start? Sleeping. Still not great, still waking up at 3-4 am with Jackson and Monkey George in bed with us. He's been sick the past week and he's been sleeping well, but still making the nightly trek down the hall.<br />
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Eating. Meh. Good days and bad days. We're still tubing him three times a day and giving him whatever solid food he will eat. He's totally on a waffle kick. The only caveat: they must be hexagonal. Eggo makes these lovely hexagon-shaped waffles. Circles? Never. Squares? Blasphemy. On the weekend trip to Grandma and Grandpa's, the store only had circle-shaped waffles. I bought them knowing it could get ugly. I brought them home, he refused to eat them. I tried cutting one into to hexagon and one into a trapezoid. No dice. Occasionally, he will ask for toast and Sunbutter, but mainly eats only things dry and crunchy.<br />
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Behavior. This is been the most challenging thing lately. He's coffee bombed the kitchen more than once, dumps the cat's food daily and uses Cheerios as confetti. He hates sitting the chair to be pumped, yeah, it's boring, but I try to keep him entertained. It has to be done. He will buck the chair and scream to get out. It's been like having a toddler for 8 years.<br />
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Now for the good stuff! HE'S READING!! This child loves books, words and spelling more than anything. We stroll through Target T-A-R-G-E-T and spell all the words at the top of the endcaps. On the next visit, he remembers those words and reads them back to me. Wow. He brings home a little book every night from school and can read them to me, no problem. Simply incredible. It's interesting to me because once he learns a new word, he knows it. I don't think he is learning phonetically, I never hear him attempting to sound out a new word. After I teach him the word and spell it a few times, he's got it.<br />
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His vocabulary is steadily increasing and he is using more descriptive works and pronouns. He's slowly phasing out the "Bob Dole" speech.<br />
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He's writing novel words on his own! J has his own unique handwriting, but when he tells me what the word is, I can totally see it. I got him a really cool little gadget called a Boogie Board for Christmas. It's an electronic writing tablet that erases at the touch of a button. I see a lot of trapezoid drawing in my future. I like it because it uses a stylus and not a finger like the iPad. Nice writing utensil practice!<br />
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Jameson is totally loving school. He's met the girl of his dreams and they are planning to get married and live with us. So nice to have your life planned out at 4! The girl's sister came up to me on the playground and said, "My sister is totally in love with Jameson.....like, seriously." Oh to be young again!<br />
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Jameson is doing Tae Kwon Do and loving it. He got his white belt and broke a board with one hit. Jackson, naturally, hates it because it's very loud.<br />
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I guess that's all I got for now. <br />
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Object du Jour: Trapezoids and plastic letters. "What da word say?" is a phrase I hear a lot when he's laid out RTCG on the floor.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-62797590152300044742012-09-12T10:09:00.001-05:002012-09-12T10:09:49.328-05:00Queen Slacker!That's me! I can't believe summer is over!<br />
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Both boys are in school this year. Jackson is in second grade and Jameson is in 4K half days. The both are loving it. Jackson was not sure the first few days because he's got a new regular ed teacher and a sub until January in his spec ed class, but now he asks to go on weekends.<br />
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Where to start? Eating and sleeping have both been horrible for Jackson. He's now tubed 3 times a day and eats all things dry/crunchy in between. He will no longer eat purees or sandwiches and won't drink the formula anymore. Doesn't seem to be a clear reason why. It's been very frustrating, but we've been getting help from the GI clinic. Right now, their main concern is weight gain over oral eating advancement. He got down to 30 lbs (remember, he's 8) and he gained almost 3 lbs after we went to the three times a day tubing schedule.<br />
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We had been tubing him at night, but we stopped for a few reasons: he won't stay in bed, which was pulling the button to it's limits and I was afraid he would pull it out. The second reason is that he was waking up so wet at 3-4 am, I would need to change him from head to toe and then he was up for the day. Even with an extra pad in the diaper, he was peeing himself silly. Good times. Which then lead to mountains of laundry.<br />
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We are now going to be starting him on melatonin to help him sleep. He's taking over two hours to fall asleep and then waking 2-3 a night and most mornings I find him in bed with me or sleeping on the floor. Hopefully, the melatonin will help. The ped gave me dosage instructions, so I'm on a mission to find some today.<br />
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J's 8th birthday was in July, and after partying with Grandma and Grandpa, we went to Packers Training Camp and a little amusement park in Green Bay. The week before school we went to South Dakota and visited tons of cool stuff, and just spent some family time together before the boys were off to school.<br />
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Yesterday, I got a call that J had an allergic reaction to "something." He had full-body hives and wheezing. They gave him Benadryl, which cleared up the hives, but his teacher said she noticed leg tremors. The ped said she wasn't sure what caused the leg tremors, but it's not a sign of the allergic reaction, maybe the Benadryl. She said to watch him and see if there are any more.<br />
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Yep, it's non-stop adventure around here.<br />
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Object du Jour: Super Why and the iPad.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-63779428479870985312012-07-02T14:16:00.001-05:002012-07-02T14:16:33.971-05:00Just Catching Up!Jackson had the Rast Test for milk and his levels went up and they don't know why. So, he can still have the baked-in milk products, but no raw milk protein. So, that means no raw milk challenge. I was really hope we'd be able to try some new stuff. <br />
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J has now decided that the cool kids don't drink their formula, so he's lost 2 lbs and down to 30 lbs, 10 oz. (Remember, he's almost 8) Gah! GI decided that he needs a bolus feed of 10 oz, 3x/day and then 500 mls at night. He can eat whatever he wants at scheduled times in between. He's eating or being fed 6 times per day and half of the overnight. It's like having a newborn again. On the bright side, I'm sure he's gained some weight back. We revisit GI in July, so we'll see what the new plan is then.<br />
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Jackson started baseball again and was thrilled to be "running the bases." I was worried about how it would go after so much time off, but he was really excited. They have built a fully handicap accessible playground there and even kids in wheelchairs can get up inside the structure. Downside, he's now on the Twins. <br />
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Took the boys to the Brewers' game yesterday. Jameson was really workin' the goodies they were giving away for kid's day, he got an Italian Sausage bobble head, a bracelet, ice cream, tattoos, a picture of Corey Hart (his fav player), and a balloon hat in Brewer's colors (handmade by a clown no less). Jackson was less than thrilled to be there. He did like the Brewer's clock and the K's for pitching strike outs, but that's about it. We didn't end up staying for the whole game.<br />
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Object du Jour: The ipad and plastic letters.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0tag:blogger.com,1999:blog-4296565946816311589.post-5425986791382506222012-05-07T16:34:00.000-05:002012-05-07T16:34:14.584-05:00Random Thought...If I had to rename this blog today it would be: ipadtrapezoidsandmonkeygeorge<br />
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Allergy today. Rast test for milk protein and peanuts. After the results are in we will do a raw milk challenge and see how that goes. For now we wait.<br />
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Poor J hates blood draws. At least the tech used numbing spray on him, so there were very few tears. He did keep yelling, "I need to go to the pharmacy!" at the tech. I had to explain that the pharmacy was anywhere else but the lab. lol<br />
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A link I found very truthful: <a href="http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html?ref=fb&src=sp&comm_ref=false" target="_blank">7 Things You Don't Know About a Special Needs Parent</a> <br />
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Object du Jour: Plastic letters A, O, and K.Wendihttp://www.blogger.com/profile/04227651690207938508noreply@blogger.com0