tag:blogger.com,1999:blog-88734221896039428342024-02-19T04:38:03.429-06:00Experience wildlife...raise twinsLife with micro-preemie twinsAmeshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.comBlogger374125tag:blogger.com,1999:blog-8873422189603942834.post-18232533432599159002015-04-02T19:23:00.001-05:002015-04-02T19:23:36.167-05:00Pre-K...gulp<div class="ecxMsoNormal" style="background-color: white; color: #444444; font-family: Calibri, sans-serif; font-size: 11pt; line-height: 20.8266677856445px; margin-bottom: 1.35em;">
This has been a big week full of big steps and milestones.<span style="font-size: 11pt; line-height: 20.8266677856445px;"> </span></div>
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Tuesday night I had the pleasure of attending a meeting for incoming kindergarten parents. Yep…kindergarten. We got some of the scoop on dates and other things that are coming up and to consider. Holy. Smokes. (Thanks Honor for watching them!)</div>
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<span style="font-size: 11pt; line-height: 20.8266677856445px;">Wednesday was a day for appointments. In the morning we hit the ENT for a check for Parker. His t-tubes in his ears have been in now for over 2 years. The ENT is ready for them to come out since there is no appearance of fluid and there is no concern over any type of speech delay. It is out-patient surgery to remove them and put a small patch inside his ears to make sure everything heals correctly.</span></div>
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<span style="font-size: 11pt; line-height: 20.8266677856445px;">After a quick park break after the first appointment…</span></div>
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We headed to the pediatrician for our pre-K checkups. Here’s the latest, including everyone’s favorite – their numbers.</div>
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<span style="font-size: 11pt; line-height: 20.8266677856445px;">Parker is doing good. He passed his eye exam, and they confirmed that he has some super-sensitive hearing. Good that he can hear great, not so great when you’re a kid that deals with sensory issues. While he does have a list of diagnoses that are included on his note to school, he is cleared and there’s no reason that any of them will cause him any concern as he gets started. His g-tube site has healed wonderfully and there won’t be any need for medical intervention at this time – he’s sealed up and great. He did get his finger poked for blood and 2 shots. He is not nearly quite the stud his sister is at getting poked so it was slightly dramatic. He is a whopping 34 pounds, fully clothed and with shoes on which puts him on the at 3% on the growth chart (and gives him a BMI of 0.2%).</span><span style="font-size: 11pt; line-height: 20.8266677856445px;"> </span></div>
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Payton is doing well. She passed her eye and hearing exam with flying colors. She also has a list of growing diagnoses that will accompany her to school. She will continue to be followed by the Hematology doctors for a while. If school starts and she is still receiving drug therapy for her aplastic anemia, we will then go on exploring additional factors to take care of with the school nurses, but right now we need to wait and see what happens. She again instructed her nurses on how to poke her finger for blood. Because the vaccinations they were to get this time are live virus vaccines, and she’s still immune-suppressed, she can’t have any vaccines until she’s finished drug treatment at least 6 months. She spent her time with Dr. Woodford telling him everything he needed to know and correcting him about everything happening with her. She is 46 pounds and right in the middle of the pack for height and weight.</div>
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So they’re ready. Kindergarten Ahead and registration are in a few weeks. We’ll keep you updated!</div>
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P.S. We stopped at mom's new work so they could meet my new work friends. They were very happy. This would be the college graduating class of 2033. </div>
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-82276481045837410572015-03-10T21:35:00.000-05:002015-03-10T21:38:36.183-05:00Already March...I'm not really sure what happened to February. But it is already March. That means warmer days, longer days (we've survived daylight savings, whew!). Here's a quick "what's been up 'round here" kind of post...<br />
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We met some new puppies at the Humane Society while we were there for a birthday party (how fun is that?!)</div>
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We took Parker to meet Payton's doctors and nurses at one of her appointments. Thank goodness Aunt Bo could go help. </div>
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It went from inches and inches of snow, to shedding the winter coats and playing when there wasn't one cloud in the sky this past weekend. </div>
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We played bingo using M&Ms, and cut Payton's hair big time!</div>
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We passed out Valentine's and special presents to all Payton's nurses in the Hematology clinic. </div>
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Parker went to check in with the surgeons at Children's. He's been officially discharged! We celebrated with hot chocolate. Dr. A gave Parker the option of having him remove his tube in the office of having me do it at home. Parker chose to do it at home. So after dinner, we put on our brave, goofy faces and with a little help holding him down, I removed his g-tube for the last time. </div>
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(And not to be left out, Payton made her silly face to go along).</div>
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Several people have asked about his stomach. Once the tube was removed, it took about a day and next to no drainage and it has completely sealed itself, so there won't be any need to go in and surgically close the site. The tube was in for just shy of 5 years. His stomach now looks a little like he has another belly button. Between his bowel perforation, other surgery for fundoplication and now this he's got 6 scars on his abdomen. I told him they were good practice ninja scars, which he seems to like. To celebrate the tube coming out, we decided to go out to lunch and go bowling - a major hit!<br />
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Not to be out done by her brother, 4 days later, during a regularly scheduled doctor's appointment, we got a surprise. Dr. Lowas said she's doing so good and hasn't needed any transfusions for a while that her picc line could come out. In one quick movement the nurses had it out and she was tube free too. She has just a little spot on her arm from where the tube was coming out. After 4 months of dressing changes and round the clock care of it, she was tube free.<br />
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This past weekend Payton and I had a little girl time and got to meet baby Oakley. Payton is now well versed in baby holding and working out her babysitting schedule with Victoria.<br />
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After 5 years, having kids without any tubes of any kind for the first time EVER has been a little weird. The closet once dedicated to medical supplies has been cleaned out. It is good, and a little odd, to have to shut off the little voice in my head that was always keeping an extra eye on those tubes. Let's hope everything stays that way.<br />
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Also, we're going through some growing pains here - new schedules, new people, new places. If y'all have a few extra happy thoughts, prayers, sparkles, or whatever else you have and wanted to throw a little our way, we'd happily take them.<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-44101447616093029372015-01-30T21:26:00.000-06:002015-01-30T21:26:09.014-06:00So Long, FarewellDue to several reasons (which I won't get into too much now), today was the end of an era.<br />
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Today, the twins had their last day Children's Respite Care Center. They have gone there for almost 5 years, every day. <i>5 years. </i>They have in so many ways grown up there. <br />
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We shared our 1st birthday here...</div>
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We got loved on here...</div>
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We practiced standing here...</div>
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We learned about books here...</div>
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We started to love art here...</div>
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We played dress-up with friends here...</div>
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We played here...</div>
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We made first best friends here...</div>
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We were serious and goofy here...</div>
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We had our first field trip here...</div>
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We had special snacks here...</div>
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We had teddy bear picnics here...</div>
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We laughed and smiled here...</div>
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Dear CRCC,</div>
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You have played such a huge role in our lives. You were the answer to questions when they were so young and still so very tiny. You loved them, cheered them on and rooted for them - and did the exact same thing for me. You listened, helped, problem solved, and cared for them. You helped them learn to crawl, walk, talk and eat...and do so better than they ever were supposed to. They have excelled and you helped steer them. </div>
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You nursed them when they were so tiny, through so many procedures, hospital stays, ER visits, and new medicines and diagnoses and helped make them well again. And every time you helped heal them, you unknowingly helped heal me too. </div>
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You,all of you, are a sweet, caring, happy place for us and you will always be. I don't know how you being to thank someone or explain how grateful you are when they take such wonderful care of you and your children. All of you are like our family. Thank you will never be enough. </div>
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Until we come back to visit....</div>
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Amy</div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><i><b><span style="background-color: white; font-size: 14px; line-height: 20px; text-align: left;">When we focus on our gratitude, the tide of love rushes in.</span><span style="font-size: 14px; line-height: 20px; text-align: left;"><br />-Kristin Armstrong</span></b></i></span></div>
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-31501224331062357692015-01-25T21:40:00.000-06:002015-01-25T21:40:08.885-06:00January Sunshine (and few updates)In the midst of all the crazy lately, Payton seems to be responding to her infusion therapy. They told us it would be 3 months before anything was decided. Well 3 months out and she hasn't had any infusions in 2 months. Her numbers are inching up little by little and we've been able to back off of her magnesium and cyclosporin. Yay! And I don't have to give her Neupogen shots at night any more - fingers crossed it stays that way. She does NOT like having to get her pokes at home.<br />
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Saturday we spent a few hours at the zoo. The sunshine and fresh air felt good. And we got to see the new baby giraffe who is soooo cute.<br />
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Tonight, Parker got upset about having his gtube. This topic is coming up a lot lately and seems to be a major source of anxiety for him. Tonight he wanted to know what super hero has one. Since not everyone has a gtube, and not everyone has super hero powers, they must be kind of like the same thing. So if anyone has some ideas for a super hero with a gtube, let me know!<br />
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Payton tonight had a breakthrough. As she saw a minute of the start of the Miss Universe pageant, she went on like this -<br />
"Aren't those ladies so beautiful. I want to be like that when I get older and wear a fancy dress like that. But I don't know what I'm going to do! I want to be an animal doctor, a doctor for kids, a zookeeper, a firefighter and work in the clinic. I don't know how I'm supposed to do all of those things if there is only one of me!!"<br />
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Changes...big changes...are happening soon. Stay tuned!Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-46327797182065045202014-12-30T21:41:00.000-06:002014-12-30T21:41:04.238-06:00Happy 2015!December has come and gone. The holidays are about over. It was a season full of friends, family, and adventures.<br />
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At the Holiday Family Festival with Sydney, Ava and Aunt Kristin...</div>
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Family Christmas party with Aunt Bunny and the cousins...</div>
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A round of influenza meant Payton had another hospital stay. When she came home she shared with Parker and me. After a few weeks we're finally all feeling better.</div>
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We made a special stop at my favorite coffee place for caffeine for me and lemon poppy-seed muffins for them. </div>
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A stop at the Mormon Winter Quarter House to see all the amazing gingerbread houses. </div>
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A special afternoon on the town with Aunt Bo and Mamaw to see the Rockettes holiday show. </div>
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And of course, their school holiday party that included time with friends, face painting, gifts, and a visit with Santa. </div>
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A quiet Christas home, complete with a Doc Mobile and remote control dinosaur made a good way to end the month. And made a few kids beyond happy. </div>
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It has been a weird, wild ride in 2014. Here's to a 2015 full of firsts, adventures and love.<br />
Happy New Year!!!<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-21485587682938928542014-12-17T19:25:00.001-06:002014-12-17T19:25:12.206-06:00Christmas is coming....Christmas - this year it's what sneaks up on you when the rest of life is trying to go crazy. In the midst of the crazy something had to get by me. This year, it's Christmas cards. They are just not going to get done or out. So instead, here's a little extra dose of cuteness twin style to get you through.<br />
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<strong><span style="color: red; font-family: Verdana, sans-serif;">Merry Christmas!!!</span></strong></div>
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Updates soon on all things school, holiday things, Payton....and Parainfluenza (yuck!)</span>Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-54381585109081888762014-12-02T22:17:00.000-06:002014-12-02T22:17:42.296-06:00Shake It OffBecause it's a few weeks until Christmas, cold outside, full of doctor's appointments, bloodwork, medical supplies....and I could go on. Basically life is busy right now. There's lots of stuff coming up. Things are going to get a little crazier while we get through the holidays...and you need to take a break and laugh. Because I did. I've watched this repeatedly and I can't stop giggling. So trust me, this is 4 minutes very well spent. <br />
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Taylor Swift....Payton's giving you a run for your money. <br />
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<a href="http://youtu.be/bXVAqwsY8Qc" target="_blank">Shake It Off - Payton Style</a><br />
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Coming soon - Christmas parties, appointments, and some updates. Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-37383337350520126392014-11-19T20:55:00.000-06:002014-11-19T20:55:48.309-06:00Let It GoBefore the snow started falling around here on Saturday, we went to Respite Care for breakfast with the Pancake Man and our friends. Some pancakes and face painting make for a good day. <br />
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<tr><td class="tr-caption" style="text-align: center;">Payton, their buddy Maya, and Parker</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Payton and Maya checking out their new "ink"</td></tr>
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The morning was topped off by a special visit from Elsa and Ana. Nothing is better than meeting the princesses from Frozen. <br />
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<tr><td class="tr-caption" style="text-align: center;">Payton and Maya getting autographs</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Parker and Elena patiently waiting their turn<br />
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The girls got the chance to sing with Elsa and Ana (Parker chose not to because "boys don't sing").<br />
This will be 2 minutes of the best minutes you have all day - I promise it's worth it. <br />
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-42471353613132407312014-11-12T21:25:00.002-06:002014-11-12T21:26:28.698-06:00Life As We Know ItThe past month has been a complete whirlwind. Between the twins' birthday, Payton starting treatment, Halloween and day-to-day life, things have been a little more than average crazy. <br />
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Thanks to a really beyond wonderful fall, we were able to spend a lot of time, up until the past couple days, outside and enjoying the sunshine. </div>
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We spent one afternoon at the zoo with out cousins. And as has been so many traditions, they had their picture taken on the lion statues near the front. </div>
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There have been a few happy days after school with a piece of Halloween candy. </div>
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We've hit the closest Scooters. Coffee for me - seriously you can't go wrong with a white chocolate mocha - and muffins for them.</div>
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Payton is doing fine after her treatment. We are going to Children's twice a week for blood draws and monitoring where she marches around like she owns the place. I'm pretty sure I only go because she can't see over the steering wheel to drive herself. We finally finished a month of steroids this week - YAY!!! Last week she did get a platelet transfusion because her counts were so low. Her blood counts had held steady for a while but have started to drop off again. We added daily Neupogen injections which we are doing at home. She is doing really well with her picc line. She will continue to be monitored for the next couple months to see if her body wakes up and starts doing what it's supposed to. If not, we'll discuss options and see where we go next. But for now, it's a wait and see. </div>
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And, for a minute when it was about mom....</div>
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I put on my gear, including my necklace with my two P charms for the twins, and ran my first half marathon in Lincoln. It was amazing. Almost better, was Payton asking if when she gets her "tube" out (picc line) if she can run the finish with me sometime. She also wanted to wear my headband and finishers medal when I got home. </div>
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-30549209797175550342014-10-22T22:07:00.001-05:002014-10-22T22:07:24.715-05:009 days and one treatment doneLast Monday Payton and I checked in to Children's Hospital for what would be a very long 9 days. <br />
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Monday night was spent getting settled and prepped for everything that was coming Tuesday. The worst part of our night was the 6 attempts it took to get her IV started. This led to her asking every single person for the next 8 days getting asked by her "what are you going to do to me?"<br />
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Tuesday started early with getting platelets to prepare her for getting her picc line. Thank goodness for Madeline, a nursing student, who painted her nails and hung out with us all day. she was even able to go with Payton to the operating room when it was time to do her picc line. It took them a few tries to get the line just right and placed. She was pretty happy it meant her IV could come out, but she was really loopy for a while when she was done. <br />
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Tuesday afternoon as we started running her infusion medicine, they were on the lookout for any kind of reaction and they weren't disappointed. Payton had a hard time tolerating the medicine at the full rate they wanted to run it at. She broke out in some monster hives that started on her face and rolled all the way down before they were done. We had to take a break, slow it down and take a few rounds of Benadryl and hydrocortisone to get it under control. (There were them at a good moment as they started coming out).<br />
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We spend a lot of time trying to waste time. Painting, playing, eating pancakes....<br />
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After her initial reaction, she did really well and tolerated things with all the medicine. She was a favorite with the nurses as she was quickly scanning her own meds, running the machines, etc. Payton is really a good patient, if you can get past the occasional flare up of attitude from the steroids she's on. <br />
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Sunday afternoon got a little long and she quickly was having IV pole races in the hallway with her neighbor, who ironically was named Parker and is also 5. We got to be buddies with him and his parents and they were quickly making the nurses a little nuts.<br />
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Monday afternoon and evening they decided to give her blood and more platelets to top her off before sending her home. She took a good nap while we waited around.<br />
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When she woke up we got a special visit from the UNO hockey team. We even got a picture with them and her new friend Parker. They brought goodie bags, signed posters, and even tickets to a game in a few weeks. So cool!<br />
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After dinner, Molly came to see her to make a special tutu. It was totally a hit. She wants to make them for all the nurses and take them back there (thank you Molly!!!). After Molly left, we took the tutu out for a test spin around the floor. <br />
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Tuesday morning we got the official ok that we could go home after some final stuff was arranged. We'd be out shortly after lunch time. After getting blood, platelets, eating dinner and getting some sleep, she was in overdrive. We spent two hours lapping the 6th floor. When the doctor showed up and asked how she was doing she told him "I've been doing this for hours. What do you think?!?!". Thank goodness for a doctor with a sense of humor!<br />
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We were able to go down to a special carnival they had in the lobby while we waited for final supplies and orders. It was a life saver at helping fill in some time while we waited, since she knew she was getting to leave soon. <br />
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Shortly after lunch, I'd done my education with homecare, we had all her scripts and we were ready to roll. After 9 days we were breaking out of there.</div>
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As we were leaving, she told me the sunshine felt so good and all she wanted to do was go to the library. The first thing we did when we got home was to take a bath so she could be clean and wash off a weeks worth of hospital stuff. She's fine to leave the picc line out, but some friends from my work let me borrow some Edema Wear. It's soft, woven, flexible and acts as a good sleeve to protect it so she doesn't catch it on anything. She was a little nervous about her "tube" in her arm, but then we talked about how now her and Parker have special tubes, and some of her friends at school have tubes, she's ok with it now. That and it means no more pokes for now on a regular basis. <br />
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We go back to the doctor on Friday. We'll resume twice weekly labs for the duration. She's on 3 more weeks of steroids - heaven help me. It is a wait and see game at this point it this therapy triggers her body to do what it's supposed to do or we move on to another step. <br />
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For all the cups of better coffee, messages, tutus, boxes of sunshine, balloons, and turns sitting with her so that I could step away......thank you. <br />
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To Kylie, Danielle, Lynn, Lynette, Kerry, Jess and all the other amazing nurses who take care of both of us for 9 days.....thank you will never be enough. You are now included in a list of nurses who will forever be in our hearts. Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-55121082428237127252014-10-09T21:18:00.001-05:002014-10-09T21:18:28.541-05:00Happy Birthday.... (and upcoming plans)5 years old. Cupcakes at school, a successful doctors appointment, dinner out, a visit with Aunt Bo at her ice cream house. All starting with a 4 a.m. wake up call to confirm that they were finally 5. Ending with telling them goodnight and Parker telling me "I can't wait till I'm 6". <br />
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And yep....even mom had cake at work today. Celebrating their birthday, survival, the fact I took a shower this morning and all my clothes were on the right way. :)</div>
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And now for what's coming next over the next week or so...<br />
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Payton will go in Monday afternoon for her usual lab draw but will be in the afternoon. When she's done in the clinic, she will be directly admitted to hospital. Monday evening she will get fluids and platelets in anticipation of Tuesday, where she will get a PICC line. We've talked with several doctors and she just isn't a candidate for a port. After the PICC line is in, she will begin 4 days of infusion treatments that involves a cocktail of 4 drugs. The hope is that the treatments will jump start her bone marrow to do what it's supposed to. It will be a wait and see game for a while after we're released to go home. She will be on a couple of her medicines after she comes home for a while, and we'll be managing her PICC line, as well as being bumped up to 3x a week blood draws. <br />
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We'll keep you updated how things go, but for next week that's what will be happening here. For updates, visits, etc., just get in tough with me. <br />
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More to come!Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-728308915765247612014-10-02T22:55:00.002-05:002014-10-02T22:55:49.509-05:00Here's the skinny, the deal, the timeline...the scoopFor several weeks Payton has just been in a wait-and-see pattern. Last week when she finally got wimpy enough, she had a transfusion. She was pretty quickly having better mood, appetite and color. After another week now of watching her, her numbers are low still but are better (yay!), however her little body isn't doing what it's supposed to do and keep making it better (boo!). The genetic tests are all back and they can no cause of the aplastic anemia. This is all just an autoimmune situation.<br />
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Sooooo......the doctor is ready to keep moving on.<br />
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We will be moving forward with the immune suppression therapy, most likely the week after next. She will get a central line - a port or a picc line - prior to it and some platelets to help her prepare. The central line will be in for a while, and she will come home on a couple medicines for a little bit, including one I'll have to learn to give her by injection for a little while ( or take her to work and let one of my nurses there give to her). Doing this therapy is a 4 day admission to the hospital for her if all goes well.<br />
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Next week between her and Parker there are 4 appointments on 4 different days, prepping to turn 5 next week, working out all this that is coming and this little things called work. If you've never been asked to pray for good coffee before, I'm asking for you to do it now.<br />
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As we get more information about the schedule we'll be trying to arrange things for schedules. Trying to keep things as normal as possible for Parker and someone will have to stay with her at all times. I'm not always so good about asking for help when I need an extra pair of hands, someone willing to play ninja turtles or someone who is willing to talk about Frozen or rock out to Taylor Swift. I may be asking for some help.<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-10902281415058565402014-09-22T21:46:00.000-05:002014-09-22T21:46:07.142-05:00Topping Her OffThis is the start of the third week Payton has gone in for twice weekly blood draws. She wants to know "do I have to get a poke today?" She mostly does ok, but if they draw from her arm instead of just a finger poke it gets a little rough.<br />
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So, basically at this point, her numbers have stayed the same type of bad since we started this. Her red and white blood cells are in too low. Her platelets, <a href="http://www.mayoclinic.org/symptoms/neutropenia/basics/definition/sym-20050854" target="_blank">neutrophils</a> and <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003646.htm" target="_blank">hematocrit</a> are so low they put her into critical results. Her bone marrow is still working at just 10% of what it should.<br />
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The doctor has told us that at this point, this is all happening as a type of autoimmune process. With all the testing they did, they can't find any virus source that is causing this to happen in her. We are continuing with some genetic testing at this point but that won't provide any more insights for a while.<br />
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Because of her low results, she's officially acting different. It is catching up with her. The doctor gave her some time to see what her body was going to do but it just isn't keeping up. She will have her first transfusion Thursday morning. They will continue to monitor her counts after that and see what happens. Once she is at a point this is happening more rapidly, we will begin to prepare for immune suppression therapy.<br />
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Updates more later this week after we see how she does. Thank you for the continued prayers, checking on us and thinking of us. It's appreciated more than you know.<br />
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Lots of people have asked what can they do. Right now there's not much here. If you want to help, please donate blood. Or consider getting screened to be a <a href="http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Donation-FAQs/" target="_blank">bone marrow donor</a>.<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-67109081277718496342014-09-16T21:26:00.000-05:002014-09-16T21:26:17.359-05:00A little bit of normalAfter the whirlwind Payton's new medical stuff has caused, this past weekend we had a little bit of normal. Since it's an outside event, we hit up Touch A Truck ( or Touch A Tow Truck, as Payton says).<br />
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On Sunday, we went to Mighty Mavericks at University of Nebraska-Omaha with our friends from Respite Care. So much playing with all the athletes, so fun. Parker had a blast. Payton was a little whiny but was getting into it after a little while.<br />
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For those of you waiting....a Payton update coming later this week. Stay tuned!Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-74390477625743984962014-09-02T23:32:00.000-05:002014-09-02T23:32:28.811-05:00Plastic....what???After a week or better of bruises that were in weird places and that I couldn't explain, I was met last Tuesday with teachers and nurses concerned because Payton had <a href="http://www.mayoclinic.org/symptoms/petechiae/basics/definition/sym-20050724" target="_blank">petechiae</a> in random places and all over. They brought up calling the doctor to check since she isn't on any meds that would cause that and both things were new. So Wednesday morning, I did and we were in with our regular doctor by lunch time. Within 2 hours, Dr. Woodford was calling saying her bloodwork wasn't good and we needed to go to Children's Hospital. He'd already called and they were waiting for us. I picked her up and we were on the 4th floor in no time.<br />
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Fairly quickly, we were in a permanent room, had lots of blood taken and an IV placed in case they needed to run anything (that last part took an hour, 3 nurses and me). It was obvious pretty quickly that things were not good. Her <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003645.htm" target="_blank">hemoglobin</a>, <a href="http://www.medterms.com/script/main/art.asp?articlekey=9983" target="_blank">white blood cells</a> and <a href="http://www.mayoclinic.org/diseases-conditions/thrombocytopenia/basics/causes/con-20027170" target="_blank">platelets</a> were all down. By Wednesday night the plan was on that she would have a <a href="http://www.mayoclinic.org/tests-procedures/bone-marrow-biopsy/basics/definition/prc-20020282" target="_blank">bone marrow biopsy</a> Thursday morning. The procedure was quick and thank goodness, she tolerates anesthesia well. She took her favorite giraffe friends, Doc, with her and got a lift in the wagon.<br />
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She recovered with Aunt Bo, some lunch and a little Sleeping Beauty while I ran home to shower and change.<br />
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We spent the rest of the time just hanging out in our room. Because of tests they were running, she was technically in isolation so we spend a lot of quality time in her room. The best thing about being there was the view and watching the sun rise, which we did every morning.<br />
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By Saturday morning, it was over. She had had enough. She wanted out. She wanted to go home. She was mad. So when the resident came in to the room and asked how it was going, I told him...."she's officially mad and pissed off and she wants to go home" (ok, I was too). Parker was reprtedly saving part of his food for her when she came home. And lets be honest, the little runt can't really afford to skip any calories.<br />
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The doctors came in with a diagnoses, a plan, and an agreement to send us home. Payton has what we're calling for now <a href="http://www.mayoclinic.org/diseases-conditions/aplastic-anemia/basics/definition/con-20019296" target="_blank">Aplastic Anemia</a>. Bascially, her bone marrow, which should be working at 100 % making new blood cells for her, is only currently working at 10%. All her counts were still low but steady and hadn't fallen off any more. She will follow with the hematology team at Children's indefinitely, which for the foreseeable future will include twice weekly blood draws in the clinic to monitor her levels. She could go home, with some strict outlines and rules for what to watch for. We agreed, signed off and on the first football Saturday, she suited up and we were out.<br />
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She and Parker were over the moon to see each other after 3 days. The first thing they do together - pull out one of the giant tigers and proceed to be doctors to take care of him. </div>
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We were told not to take her around lots of people, avoid big crowds, etc. Basically, if she catches something her body doesn't have what it needs to fight it off now and could be bad. So for the weekend we decided the highlight would be hitting the Labor Day Parade. Fresh air and sunshine to wonders for everyone. We even saw "Star Wars guys" and Ana from Frozen...score!</div>
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Over the few days we were there, we had lots of visitors and were beyond spoiled by people making sure we were taken care of. Thank you isn't enough to say, but it's all I have. </div>
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The best boss in the world made sure Payton and I both had what we needed. :)</div>
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Yes, I was taken to dinner at Old Chicago and I'm that annoying person that took a picture of my food. It was good. The company was one of my favorite people. And I just wanted to. </div>
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Parker enjoyed a little one-on-one time with Aunt Bo and Grandma shopping at Target and pounding some chips at La Mesa. (Yes he's wearing a bow tie to dinner).</div>
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To answer some of the questions we keep getting -</div>
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We don't know exactly what's next right now. Bone marrow transplant and<a href="http://www.aamds.org/node/90" target="_blank"> immune suppression therapy</a> are both things that have been brought up, but right now, we just don't know. We're waiting for more specific results before anything is decided on. </div>
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She's doing ok. She is a little wimpy and her appetite isn't quite normal, but she's ok. </div>
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Is this a preemie thing? No one knows. Maybe. Not necessarily. I asked...no one can give a definitive answer. </div>
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The links above are more explanations on what each of those things are - in case you want to know. </div>
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We didn't have have to get platelets or transfusions yet. It doesn't mean she won't at some point. Without counting this, the twins together in their short little lives have had together 13 blood transfusions. If you've ever considered giving blood or platelets, please do. </div>
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Yes, if you want to visit, it is ok. She loves everyone and a chance to show off (so does Parker). But please, if you are sick, wait until you're well. You may remember our days in winter lockdown....well, we're kind of back in the same type of situation. So if you come over, don't be mad if you get handed hand sanitizer :)</div>
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Yes their birthday is coming up. I'm tenatively planning a birthday party. I'm waiting just a while to see what happens and what directions we're given before we decide how to continue. </div>
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The past week so many friends have gone above and beyond to make sure I'm ok, that she's ok and we both know we're thought of. You are all amazing and I can't even come up with words to thank you. Bags of sunshine, coffee delivery, tylenol delivery, special trips to see us, things to keep us busy, just checking on us...all of it means the world. I'm so blessed and grateful...there are no words, just lots of tears. </div>
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<span style="background-color: white; color: #333333; font-family: Georgia; font-size: 14px; line-height: 21px;"><i>Fear and love cannot inhabit the same moment. Choose love. Every time. -Kristin Armstrong</i></span></div>
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com1tag:blogger.com,1999:blog-8873422189603942834.post-51483756299988719552014-08-18T07:42:00.000-05:002014-08-18T07:42:04.646-05:00The SleepoverThe twins really wanted to have a slumber party with some of their best friends, Sydney and Ava. After a little debate and some mom planning, we decided to do it. Since they've never spent the night anywhere away from home before (although if anyone ever wants them, they're yours), we decided I would go too.<br />
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Hours of yelling, screaming, running, playing, snacks, balloons, pillow fights, makeovers and glow sticks, the night was a success without any major issues.<br />
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Parker loves the girls and plays fine with everyone. </div>
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But it always helps when your friends like Hot Wheels too. </div>
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Princess makeover complete. </div>
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Trashed living room = sleepover success!</div>
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My new favorite picture of her. Like makes me stop and catch my breath kind of favorite. </div>
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-31756358104590055322014-07-20T21:20:00.001-05:002014-07-20T21:20:18.743-05:00Air ShowOn a warm summer morning, grab your some of your best friends, hit farmers market for goodies and head to the air show for some fun and an amazing day, as you do. <div>
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Parker did amazingly well with the planes and the noise. SO EXCITED!!! (And thankful for Sydney, his kindred spirit who spent most of the hanging with him). However, he did have a major meltdown at the F22 flew overhead as we walked to our car to leave. It was the longest walk. He even went to far as to yell at a 20-something year old airman who was helping us cross the street about letting such loud planes be there when he was and he needed to tell them not to do that again. Thankfully, we made it home in once piece and did not end up in jail on base. 98% win for the day...I'll take it. </div>
Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-91392555838769237882014-07-07T18:40:00.001-05:002014-07-07T18:40:33.062-05:00The 4th That WasIt was a great 4th...with parades, zoo time, dinner eaten outside on a nice patio (as you do) and some time at the lake. <div>
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How do you know you live in Iowa and you've gone to a small town for a parade???...horses, tractors and you get popsicles thrown at you to cool off. And it was great. </div>
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She's the only one that would let me take their picture with the statues at the zoo. He was to distracted holding on for dear life on the carousel to notice the picture. </div>
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At the lake to wrap up the weekend. It was hot and sunny and the boat watching was pretty good. Payton is turning all golden from being outside. I started calling her my little baked potato which she isn't too sure about yet. </div>
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Parker spent time digging in the sand but also he went into the water. Let me repeat...Parker went into the water. In. Up to his armpits. In water. (Victory!)</div>
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He was also overheard saying after a boy made a comment about his g-button "he doesn't know it's hard for me sometimes and I have to practice". (Victory!)</div>
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And for a minute, right before he had a meltdown, he did good. (You can't win them all)</div>
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-56568360027858940452014-06-29T20:25:00.001-05:002014-06-29T20:25:34.034-05:00Summer NightsWhen everything is just as it should be on a summer night, it makes you happy and makes you feel like everything is just right. A warm summer night at a summer picnic with our friends from respite care - playing on a playground, running through the splash pad, eating, laughing, playing baseball, chasing beach balls - all worked perfectly to do this. And throwing in some cotton candy and snow cones always helps.<div>
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***Disclaimer*** Not every moment of the evening was wonderful...like the major meltdown Parker had that spiraled for a good chunk of the evening. But I refuse to let that ruin what was so close to being a perfect evening out surrounded by people that feel like home. #somedaysarejusthard</div>
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-80596565294741844012014-06-22T22:44:00.000-05:002014-06-22T22:44:40.619-05:00Summer swingIt is officially summer, and the twins are busy in it!<br />
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Playing in the park by the "big fountain" </div>
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Hanging by their new water table (the other one finally broke!)</div>
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Cutting up melon (they're just butter knives, I promise)</div>
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Lived through more than a couple big thunderstorms and spent some time in the basement</div>
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Watched the deer that hang out in the yard</div>
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Been to the summer arts festival and got faces painted</div>
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Helped at the dog wash...</div>
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...and stopped for a donut break</div>
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got our official pictures taken for Blastball - there's only one game left!</div>
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and even had a day at the beach for a little R&R</div>
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Hope the summer is off to a good start everywhere else too! More to come - follow-up from Parker's last procedure, our last Blastball game and a special picnic.Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-12525631900306920312014-06-08T22:12:00.001-05:002014-06-08T22:12:26.510-05:00Dream Night 2014We got lucky and were able to attend Dream Night at the zoo Friday night (thanks Bridget for getting us the info to get signed up in time!)<br />
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The zoo for this special night gives kids who have special needs, challenges, etc. and their families a chance to experience the zoo without the normal crowds and the chance to take as long as need to and try new things. It is completely amazing. And for a kid like Parker who has some serious sensory issues, it is a pretty big deal. </div>
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We got to picnic outside with every possible kind of treat we'd want - cotton candy, popcorn, ice cream, hot dogs and hamburgers, apples with carmel, cookies. Yum! (You can see the line behind them for dinner...glad we did that first!)</div>
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Running full steam towards the sting-ray fountain (notice how there is only one other person the entire way down the hill??)</div>
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We got to go behind the scenes at the aquarium. We went upstairs and took a tour of all the tanks from the top and got to look down in. We got to see one of the sea turtles pop his head out on top of the shark tunnel. Soooo cool!!!</div>
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They LOVE the aquarium!</div>
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Parker put his hands in water in the touch tank and touched a star fish, an anemone, and a crab. He put his hands in the water. More than once. This was so huge! Water is a major source of issues for him, and add in the different textures of the animals...HUGE!!!</div>
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Shark tunnel all to ourselves. Seriously....who gets that??? We actually got to see and take all the time in the world we wanted. </div>
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One of our turtles swimming in the tunnel with a shark hanging out behind him. </div>
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They got to pick a painting that an zoo animal had done, and then add their own flair to it. Then we got to bring it home. We are now the proud owners of art created by an alligator and them. </div>
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Face painting!!!</div>
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Parker got his face painted. He actually let them do his cheek and not his hand or arm. He let the lady paint a turtle on his cheek. BIG HUGE SUCCESS!!!</div>
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And not to be outdone, she wanted to be a giraffe. </div>
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Bubbles before our behind the scenes tour of the animal hospital.</div>
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<a href="http://omahastreetpercussion.org/" target="_blank">Omaha Street Percussion</a> played in the plaza. They are so fun. It turned into a little dance party and they let some of the kids even jump in and play. </div>
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Fun times playing games for prizes. </div>
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We got to pet this snake. Payton, wearing her newly won bling, isn't having anything to do with it. You can see Parker's hand in the touching it without any issues. </div>
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The dessert turtle was a whole other story. </div>
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The sky as we left was gorgeous. With all the goodies they gave us, having the best time on a perfect night, ran into some friends while we were there and got a couple of wins at the same time, it was awesome. </div>
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<a href="http://www.omahazoo.com/" target="_blank">Henry Doorly Zoo</a>...you rock! Thank you so much for providing so many families with a perfect evening. If these two have been talking about it for days, I can only imagine that all the kids that were there have been doing the same thing. </div>
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And here is a little video of the band playing. If you ever have a chance, go see them. They are so much fun. </div>
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<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz12Dgncqv68K4NQCOTmYQCINofNI1NuJPkczaOnuDIAIlt3-DtNJB2BXBA5p4oheobOSL-KLlddpOPih60sQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-54375519513236640582014-05-28T14:24:00.001-05:002014-05-28T14:24:55.754-05:00Blastball!Yesterday we started a new adventure...the twins started playing Blastball.<br />
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So here's the basics - a tee, ball, bat and one base. Two teams of 5 each. Everyone bats everytime. No one keeps score and there are no outs. When someone finally knocks the ball off the tee, they run to the single base. Someone from the "outfield" team can run and grab the ball, hold it over their head and yell "BLAST!". Then they start over with the next batter.<br />
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So. Much. Fun.<br />
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And most importantly, the rain stayed away and started just when the game ended.<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-81944356406069412014-05-22T13:58:00.001-05:002014-05-22T13:58:12.124-05:00Ready for Summer<div style="text-align: center;">
Be silly</div>
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Take funny pictures</div>
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Practice your big girl smile</div>
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Wear pink everyday because it's your favorite color</div>
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Be brave</div>
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Practice using your words so mom can help you</div>
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Take deep breaths</div>
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Wear your shades</div>
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Go to parades</div>
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Run for candy</div>
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Smile at clowns</div>
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Dance in the street</div>
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Go to the park</div>
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Run to see how fast you can go</div>
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Roll in the grass</div>
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Run just to run</div>
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Laugh</div>
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Play hard</div>
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Get dirty</div>
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Get hot and sweaty</div>
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Make mud pies</div>
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Have a trike wash</div>
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Get some sun</div>
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Eat ice cream before dinner</div>
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As it should be...</div>
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Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-43165479529594398372014-05-20T12:48:00.002-05:002014-05-20T12:48:50.649-05:00Omaha Gives - Your PSA Omaha Gives is TOMORROW!!! For 24 hours, midnight to midnight, go to their site, help local nonprofits compete for prizes, and most of all, this gives you a chance to help nonprofits raise funds to do amazing work.<br />
<br />
So go now to <a href="https://omahagives24.org/" target="_blank">H E R E</a><br />
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Check out the list of nonprofits participating <a href="https://omahagives24.org/#leaderboard" target="_blank">H E R E</a><br />
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I know everyone has their favorite charities or causes. If for some reason you need help in choosing which charity to give to, the twins and I can make some recommendations of groups/places that have meant the world to us.<br />
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HAPPY GIVING!!!<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com0tag:blogger.com,1999:blog-8873422189603942834.post-45687238225799860722014-05-13T11:24:00.002-05:002014-05-13T11:25:11.209-05:00Parker...you're room is waitingRemember last summer when we did<a href="http://parker%27s%20next%20round/" target="_blank"> this</a> for the 4th time??? Well, this Friday Parker will be going in for his next EGD (#5) Friday morning to check his EOE. We'll also be checking on his <a href="http://en.wikipedia.org/wiki/Nissen_fundoplication" target="_blank">fundoplication</a>, since he's been complaining of some pain in his chest. So, we'll be checking in to Boys Town early. We'll follow up with both allergy and the GI doctors in a few weeks and see what final results are and where we go from here. I'm hoping for a quick day, some decent coffee and maybe a nap in the afternoon. If you've got extra happy thoughts or prayers and want to direct them for any of those things, we'd happily take them. An update to follow soon!<br />
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<br />Ameshttp://www.blogger.com/profile/03082093264038023708noreply@blogger.com1