tag:blogger.com,1999:blog-38503516702579783342024-03-13T21:18:19.764-04:00Oliver's Team-Making Each Moment CountKatie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.comBlogger206125tag:blogger.com,1999:blog-3850351670257978334.post-69953817360571403892014-09-19T22:23:00.001-04:002014-09-19T22:23:08.096-04:00Support Research For a CureOur sweet boy earned his angel wings on Mary 15th 2014 at only 4 years old. Please help us fight this awful disease. Support research to find a cure.<div>
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Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com0tag:blogger.com,1999:blog-3850351670257978334.post-35275149844110146812014-05-13T23:32:00.001-04:002014-05-13T23:32:09.369-04:00He's not doing well. It's now been 20 days that we've been watching him slip away from us. Each morning I wake up and think "I can't do this, I can't make it through another day of this" and each night I'm surprised that somehow I did. I don't know how I did.<br /><br />His breathing has been very slow and very shallow and has been for days and days and days. He's skeletal, it breaks my heart to see all of his bones, his body stopped digesting food 2 weeks ago. His face, his eyes and cheeks are sunken and bluish. I cry at what MLD has done to our son. I scream at the unfairness of all of this. Our baby boy, I am so so sorry. I feel like I'm falling into a dark abyss, this is every parents' worst nightmare, and I'm living it. Most days I can't believe this is my life, staring at your own child wondering which will be his last breath. It's torture. Our chubby cheeked sweet boy that loved giving hugs and pointing at cars. We don't know how he's still hanging on. We continue to hold and cuddle and kiss him. He's holding on and we're not sure why.<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com25tag:blogger.com,1999:blog-3850351670257978334.post-3510144577775081272014-05-10T11:36:00.001-04:002014-05-10T11:36:54.384-04:00Still fighting but not fighting alone<br />Oliver got dressed up yesterday, along with pretty much everyone in the Bethel School System. Students and staff in all five schools went above and beyond and dedicated an entire day to our real life superhero. <br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/10/411.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/10/s_411.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /> <br /><br />Click the link below to see more photos of their superhero day. They even made NBC News! The Bethel Community continues to amaze us, their hearts are huge and their support of our family is endless. <br /><br /><a target="_blank" href="http://www.nbcconnecticut.com/news/local/Bethel-Oliver-Ciparelli-Superhero-Schools-Students-Support--258700361.html?fb_action_ids=10152376721774462&fb_action_types=og.recommends&fb_ref=s%3DshowShareBarUI%3Ap%3Dfacebook-like&fb_source=other_multiline&action_object_map=%5B219614568247998%5D&action_type_map=%5B%22og.recommends%22%5D&action_ref_map=%5B%22s%3DshowShareBarUI%3Ap%3Dfacebook-like%22%5D">News Story</a><br /><br /><a target="_blank" href="https://m.flickr.com/#/photos/bethelpublicschools/sets/72157644633056083/">Bethel Schools Superhero Day for Super Oliver</a>(you don't need to sign up for flickr to view them, just click the X) The High School dressed up too, but their photos aren't on this link.<br /><br /><br /><br />The past 2 weeks have been the longest of our lives. We've spent them holding Oliver and knowing that he may stop breathing at any moment. There have been a few times when he did stop breathing for about 20 seconds, we thought the worst, then he'd gasp and start breathing again. We stare at him, and flinch at the slightest noise or change in breathing. His breathing over the past 3 days has been even slower, sometimes as low as 5 breaths/min. Putting him down to bed each night is scary, we don't know what the night will bring. With a neurological illness like MLD everything is so hard to predict, including death. We sleep nearby, never quite asleep, always listening. <br /><br />He remains very comfortable and is spending quality time with Mom, Dad and Thea. Still making each moment count.<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/10/412.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/10/s_412.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Mom reads some new books. This one was called "Oliver's Game"<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/10/413.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/10/s_413.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/10/414.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/10/s_414.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br />A photo canvas now hangs on the wall in the stairs to the basement(an early Mother's Day gift from Oliver and Thea) <br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/10/415.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/10/s_415.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Goodnight <br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/10/416.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/10/s_416.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com0tag:blogger.com,1999:blog-3850351670257978334.post-48556212563180324332014-05-05T21:49:00.001-04:002014-05-05T21:49:02.481-04:00No wordsThere are no elegant words that can be written to describe what we're going through right now. <br /><br />People have been asking "How's Oliver?" and we've been saying pretty much the same thing each time, that "Oliver isn't doing well, but he's comfy." The second part is true, but the first part is understating the facts. The truth is, our son is dying. And although for two years we've known that this day would come, the time to say goodbye is here.<br /><br />We've known since last week. We've been holding him, loving him, kissing, hugging, and cuddling him. These will be our last hugs and kisses. How is that possible? He only just turned 4. <br /><br />Each day he has become more and more fragile, his coloring is blueish, his heart rate continues to slow, and for the past 3 days his respirations per minute have been extremely low.<br /><br />But he is comfortable, and we aren't just saying that. His amazing nurses have given us such a gift. He is truly peaceful and in no way suffering. <br /><br />We've told him that he can go whenever he is ready. Mommy and Daddy will miss him so very much, but it's ok to go now. We are so proud of how hard you've fought baby boy. We'll be okay, we'll take care of your little sister for you. Go run and play with the angels. We love you. <br /><br />We all love you.<br /><br />He's absolutely the toughest little boy we know or will ever know. Despite everything he has faced in his short time on earth he can always make anyone smile, and he blessed us with his own smiles as often as he was able. He's touched the lives of thousands and made the world a better place simply by being part of it.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/05/05/981.jpg'><img src='http://photo.blogpressapp.com/photos/14/05/05/s_981.jpg' border='0' width='367' height='400' style='margin:5px'></a></center><br />- Posted using BlogPress from my iPhone<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com19tag:blogger.com,1999:blog-3850351670257978334.post-40546121588335145212014-04-25T07:37:00.002-04:002014-04-25T07:47:36.838-04:00We choose to be happy<span style="font-family: Georgia, Times New Roman, serif;">Oliver isn't doing very well. He's been fighting pneumonia since last week and he just can't seem to fight off this latest bug. He was started on an antibiotic right away, just like always. Days pass and we didn't see improvement, usually he starts to improve by Day 3. Day 3, Day 4, Day 5 pass and he's only getting worse, we need to try something else. He's so congested and his breathing is labored, not a "gasping for air" type of labor, but a drowning in his own secretions labor. We suction and suction and the grossness keeps coming back. For his sake, we have always called his secretions, "yuck yucks" As in "Oliver, I'm coming over there and I'm going to get all those yuck yucks. Okay?" He always breathes easier for a little while afterwards, then they come back. Repeat.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"> We lay him on an incline for hours, he's on O2 around the clock, we sleep right next to him. He's using all his <a href="http://en.wikipedia.org/wiki/Muscles_of_respiration" target="_blank">accessory muscles </a>to help him breathe. It means he's working very very hard to get air and oxygen into his body. His lungs aren't strong enough to do it on their own, so his other muscles start to help the lungs push the diaphragm up so he can expel air. This is a bad way to breathe, the human body cannot do this for very long, it's exhausting work. Oliver is exhausted, on top of this type of breathing(called "pulling") the medicines we've been giving him to keep him comfortable make him very sleepy. He's been sleeping a lot, close to 20 hours/day, but even when he's sleeping he's struggling to breathe. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"> We start him on the second antibiotic and almost right away it starts to cause him major gastrointestinal distress, cramping, diarrhea, he was dehydrated and miserable. We stop that antibiotic. Now what? There is another option, but it's what our nurses call "a big gun" antibiotic that is even broader spectrum than the second, meaning it will likely cause even more gastro issues. It's also in the same family of antibiotics that caused him problems in the past. We ask about trying one that worked well in the past that we'd taken a break from because his body had stopped responding to it, but maybe now it would? </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Our hospice nurse says she's going to be completely honest with us, she's not so sure that the "pulling" is caused by the pneumonia. Yes, he has pneumonia, but there might be more at work here, like his tiny body is tired, and starting to give up this fight. He's been fighting for just over 2 years.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"> Recently his hands and feet have been going from hot to cold, hot to cold. He's had a very rapid (133bpm) heartrate and a high fever of 102*. He's had <a href="http://dying.about.com/od/thedyingprocess/a/process.htm" target="_blank">mottling</a>, <a href="http://en.wikipedia.org/wiki/Cyanosis" target="_blank">cyanosis</a>,<a href="http://en.wikipedia.org/wiki/Cheyne%E2%80%93Stokes_respiration" target="_blank"> </a><span style="background-color: white; color: #252525; font-size: 14px; line-height: 22.399999618530273px;"><a href="http://en.wikipedia.org/wiki/Cheyne%E2%80%93Stokes_respiration" target="_blank">Cheyne–Stokes breathing</a>, </span>all of which are signs of someone dying. We've seen a few of these symptoms before and he's overcome them, he's rallied and gotten better. We've never seen this many symptoms all at once though. But at the same time, the mottling comes and goes, the breathing improves and worsens. His face will look rosy and pink, and then blue. It's seriously messes with us, we don't know what lays ahead, we just don't, and so we smile. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">That may sound crazy, but we smile, we laugh, we talk, we reminisce. We will have our whole lifetimes to be sad, cry and miss our beautiful blue eyed boy. A boy who has touched the lives of thousands of people, thousands of people who will hopefully learn that life is short, that life is precious, make each moment count. Every. Single. Moment.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So here we are, maybe in his last moments, maybe not, but it doesn't matter, we're not going to spend them being sad. We're holding Oliver and laughing about the time he climbed climbed on top of Pippa and tried to ride her, laughing about the time he shoved cookies into the DVD player, and thinking he was great at hide-and-seek by hiding behind a curtain with his chubby little feet sticking out the bottom. We have our whole lives to be sad, today we choose to smile and be happy.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com18tag:blogger.com,1999:blog-3850351670257978334.post-66631612231332212422014-01-07T21:16:00.001-05:002014-01-07T21:16:44.738-05:00catch upI'm feeling a little guilty about not keeping up with Oliver's blog. The website sent us a 2013 reports and hundreds of people come to the blog each week to check on Oliver and we haven't written since October! Sorry team.<br /><br />The thought of writing 3 months worth of recap is a bit overwhelming so I'll keep the update as short as possible and try to stay more on top of updates.<br /><br />First big news, Oliver is a big brother! Thea Juliet was born a week late on 11/2. Oliver loves her and cuddles her all the time. However, he doesn't like that his once quiet house is sometimes filled with a fussy baby crying. He lets us know this by squeezing his eyes shut extra tight when she fusses too loudly for his liking. If he could still talk he'd say "Shush, shush, shush Thea!" <br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1307.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1307.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Next came Thanksgiving, where Ollie and Thea were hugged, kissed, held, and loved by our entire family. Our families are so important to us and seeing everyone bond with Thea and love up Ollie was wonderful.<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1308.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1308.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1309.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1309.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1310.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1310.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1311.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1311.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />In December Santa visited on a firetruck! (Thanks Water Witch Hose Co. #2 for delivering Santa to our door. And thanks for so much more!)<br /><br />And we went to the Dream Come True Santa breakfast. Delicious and tons of fun!<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1312.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1312.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1313.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1313.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1314.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1314.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1315.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1315.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br />We wore matching pjs<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1316.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1316.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br />Had some smiles<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1317.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1317.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />And dressed like Santa<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1318.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1318.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Kind...<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1319.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1319.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />of...<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1320.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1320.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />a lot..<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1321.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1321.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Oliver got a really great piece of medical equipment called a Smartvest. We call it the shaky vest. Now we're using the Smartwrap because it's easier for us to get him in and out of and it doesn't agitate his gj tube. <a target="_blank" href="http://www.smartvest.com/smartvest-system/">The Smartvest</a> vibrates very quickly and in short it helps mucous from sticking to his lungs, breaks it up so he can cough it up and out!<br /><br />Smart vest:<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1322.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1322.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Smart Wrap<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1323.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1323.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Christmas morning came and I guess the kids had been good because Santa brought lots of great toys.<br /><br />Including a big squishy ball and Batman!<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1324.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1324.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1325.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1325.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1326.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1326.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />At Christmas with the family, much like at Thanksgiving, there were endless arms for holding and cuddling our kiddos.<br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1327.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1327.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1328.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1328.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1329.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1329.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1330.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1330.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1331.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1331.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Oliver's room was Batman-ified...<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1332.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1332.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1333.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1333.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />And he now has a sweet Batman snuggie thanks to his Aunt Ang.<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1334.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1334.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />And a sweet Batman hooded towel thanks to his Uncle Steve.<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1335.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1335.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />His Auntie Jess and Grammy completed what has been named "Oliver's picture project" which took months and months of hard work and firetruck hunting! It's worthy of it's own post, so more on that later.<br /><br />As of today(holy moly I caught up!)<br />we are working on getting Oliver this great bed called the Comfylift bed, it will help tremendously with his night time positioning. He's growing so tall that our current set up is no longer working for him, he's been waking up in the middle of the night moaning, all squished up at the end of his bed(because it's inclined for his breathing and feeding). Poor kid! But this new bed is just what he needs, I sure I hope his new Batman sheets will fit it!<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1336.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1336.jpg' border='0' width='400' height='225' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/01/07/1337.jpg'><img src='http://photo.blogpressapp.com/photos/14/01/07/s_1337.jpg' border='0' width='250' height='167' style='margin:5px'></a></center><br /><br />And now you're all caught up, phew!<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com2tag:blogger.com,1999:blog-3850351670257978334.post-16487448852821999732013-10-19T14:21:00.001-04:002013-10-19T14:23:54.900-04:00Scary timesOliver has had a very rough few days. His breathing is extremely labored and he's been on continuous oxygen since Wednesday. His circulation is poor and at times his hands and feet are ice cold with no capillary refill, a very ominous sign that things are starting to shut down. But right now they're pink and warm, so this symptom comes and goes. It's all very unpredictable, and we all know that he's one heck of a fighter.<br /><br />He's only opened his eyes a few times in the past couple of days, but he's on a few medicines to increase his comfort, and they make him tired too. We haven't given up hope that he can overcome this, but we're still preparing ourselves for the inevitable and on Thursday his hospice nurse strongly suggested that we don't leave his side.<br /><br />Chris and I have been sleeping on the floor in his bedroom each night, listening to his labored breathing and dreading each sporadic episode of apnea where he doesn't breathe at all. It's impossible to truly prepare for what we'll have to endure, and it makes it extra heartbreaking thinking about the possibility of him never meeting his little sister. We're living minute by minute right now.<br /><br />We started him on an antibiotic yesterday, for no particular reason, we don't even know why he's taken such a sharp decline so quickly. We just want to give him the best chance possible. Meanwhile we're keeping him as comfy as possible with nonstop cuddles and kisses. <br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/19/1004.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/19/s_1004.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/19/1005.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/19/s_1005.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com5tag:blogger.com,1999:blog-3850351670257978334.post-34123980274859471772013-10-12T08:27:00.001-04:002013-10-12T08:27:45.557-04:00Need a new GJOliver's GJ tube is starting to show signs of erosion so it's time to go back to Connecticut Children's and have a new one put in. His appointment is Monday afternoon, hopefully the current tube lasts until then! If it doesn't we'll have no way of administering his meds, or food, or fluids and he'd have to be admitted to the hospital.<br /><br /> Because he already has a GJ in place, the replacement procedure should be very simple. It still needs to be done in the Radiology department to make sure it's ending at the correct place in his small intestine. The good news is Oliver won't need to be put under, anesthesia is very dangerous for a child with MLD. <br /><br /><br />Ollie got to hang out with his Grammy on Sunday :)<br />(and Grampy and Uncle Greg)<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/12/308.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/12/s_308.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Daddy gets Ollie ready for bed. Look how big he's gotten!<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/12/309.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/12/s_309.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Ollie takes an early Saturday morning nap<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/12/310.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/12/s_310.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />A beautiful day for a fall walk with his favorite nurse.<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/12/311.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/12/s_311.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Nap time with Dad.<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/10/12/312.jpg'><img src='http://photo.blogpressapp.com/photos/13/10/12/s_312.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com4tag:blogger.com,1999:blog-3850351670257978334.post-34004789617138803052013-10-05T18:40:00.001-04:002013-10-05T18:42:33.120-04:005K For OllieIf you'd like to participate in the SHU 5K on 10/19 for Oliver please go to: https://alsangels.ejoinme.org/MyPages/DonationPage/tabid/113190/Default.aspx and choose "Oliver Ciparelli Runner Donation" from the drop down menu. This fundraiser will support Oliver's Team and the MLD Foundation. Thanks again to the SHU Women's Lacrosse Team and Al's Angels for putting this event on. Hope to see many of you there and thanks for your support!!!<div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPBQayzvw9SHk9EqgNNarcL_F_R3ngW7GcmxQLMEqi2m43GfVN4uNt8Gc7W7KlJa_QMMoY431tMZcGgRC7JwDsb08XAqyOI8AKeIw69nBiCKEhOLm8945-zDuLm07NC8EyPrCgi_A2OMUq/s640/blogger-image-99848172.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPBQayzvw9SHk9EqgNNarcL_F_R3ngW7GcmxQLMEqi2m43GfVN4uNt8Gc7W7KlJa_QMMoY431tMZcGgRC7JwDsb08XAqyOI8AKeIw69nBiCKEhOLm8945-zDuLm07NC8EyPrCgi_A2OMUq/s640/blogger-image-99848172.jpg"></a></div><br></div>Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com0tag:blogger.com,1999:blog-3850351670257978334.post-25321107800029520312013-09-30T20:30:00.001-04:002013-09-30T20:30:24.314-04:00September 2013<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1589.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1589.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br />Here's Oliver getting ready to watch football. He's getting so big! He's been on a higher calorie formula and has gained over 2.5 pounds! Yah! <br /><br />Unfortunately he's been fighting pneumonia on and off the past few weeks. It seems like he'll just be finishing the antibiotic course, have clear lungs for a few days and then aspirate again. It's frustrating, and nothing we're doing for him seems to be able to prevent it. When he has clear lungs we're able to get smiles from him, he's happy and alert. When his lungs are junky he sleeps all the time, needs constant suctioning, breathing treatments, is hooked up to the oxygen etc and just looks plain miserable. :( We wish he could just feel well for longer than a day here and there. It's just not fair. <br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1590.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1590.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />We did get out of the house on Saturday and made it to Open Farm Day to see some animals. <br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1591.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1591.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1592.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1592.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1593.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1593.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1594.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1594.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1595.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1595.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1596.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1596.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1597.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1597.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1598.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1598.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/09/30/1599.jpg'><img src='http://photo.blogpressapp.com/photos/13/09/30/s_1599.jpg' border='0' width='400' height='300' style='margin:5px'></a></center><br />It made us a little sad to remember the previous years we have attended Open Farm Day. Oliver was able to climb and play on the tractors, we have dozens of pictures of him pretending to drive them. He used to moo at the cows(though his moo sounded more like a satisfying Mmmmmmm). He could walk around, talk, point, express interest and pleasure. This year was quieter and sadder. We miss so much everything MLD has stolen from him. <br /><br />On a happier note, Oliver is very excited for the arrival of his baby sister some time in the next few weeks! He hopes she's here for Halloween so they can go trick or treating together as Batman and a candy corn. <br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com0tag:blogger.com,1999:blog-3850351670257978334.post-24934584585165417262013-07-23T17:43:00.001-04:002013-07-23T17:43:20.963-04:00Super Oliver and his sidekick Super Dog. :)<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/07/23/1612.jpg'><img src='http://photo.blogpressapp.com/photos/13/07/23/s_1612.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br />- Posted using BlogPress from my iPad<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com1tag:blogger.com,1999:blog-3850351670257978334.post-56950781660851214182013-07-20T17:10:00.001-04:002013-07-20T17:10:32.411-04:00Antibiotic round ?It's the last day of Oliver's 4th antibiotic for his aspiration pneumonia. It was a 10 day course, and while we didn't get to the point where his lungs sounded clear, we had seen a few improvements. His coloring had returned to normal, the mottling had disappeared, his eyes have been clear and alert, and he hasn't had a fever since last Saturday... Overall it was just his lungs we were waiting on. Despite his improved outward appearance they still sounded crackly, which we learned, with enough damage that's just how people with really sick lungs might sound, even if they don't have pneumonia. So we were kind of prepared for that to be his "new normal", crackly lungs but not necessarily fighting off an infection.<br /><br />Well today, day 10 of 10, he has a fever again, his breathing is juicy and labored and he's pale. His Dr. called in a prescription for the same antibiotic he just finished. We're not sure if she thinks it will really help him, or if it's just because we're not willing to stop fighting. I mean, we thought it was working, at least it appeared to be working, he was definitely doing better. But now he's doing worse again. Did he aspirate again? Is this a new pneumonia, or the same he's been battling? We can't see a reason not to give it to him. There are many interventions we won't subject him to in an effort to prolong his life, such as a ventilator, a trach, and trips to the ER, but an antibiotic that goes right into his GJ tube with his formula, we can't see not trying that for him, even if it's just for a few more smiles.<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com9tag:blogger.com,1999:blog-3850351670257978334.post-53833134697818342312013-07-13T11:56:00.001-04:002013-07-13T13:05:02.064-04:00Not sure what to sayThis post is hard to write. I'm not even sure where to begin.<br />As most of you know, Oliver has been battling pneumonia since the end of June. It didn't respond to his usual antibiotic, that has worked so many times in the past 9 months. We tried a second, broader spectrum antibiotic. On day 3 when his lungs sounded even worse we realized we didn't have time to "wait and see" if it would eventually start working, so we started a third, even harsher antibiotic to kill off the bug infecting his lungs. He was on this one for only 2.5 days and had explosive diarrhea, and was becoming dehydrated. He was also losing massive amounts of weight. In just 2 weeks he dropped from from 33 lbs to barely 28 pounds. We could see all of his bones, he didn't look like our sweet chubby cheeked Oliver anymore, he looked like a skeleton. On Wednesday we had to stop this third antibiotic, his lungs only sounded worse, and the dehydration was taking it's toll. We didn't know if we had any options left, but our hospice nurse called his Dr, who spent the next two hours researching possible courses of action. Meanwhile Oliver developed a mottling pattern in his skin on his feet, ankles, and partly up shins. Mottling is a blotchy bluish pattern that occurs when the limbs aren't getting enough oxygen because the body is reserving all it's oxygen to run the vital organs. This was ominous. It's a sign your body is shutting down. In adults once mottling of the skin starts, death usually occurs within 24 hours.<br /><br />Our usual worry became a sickening terror. It takes over your body, you can't focus on anything, except the fact that you might have to say goodbye really soon. How on earth do you prepare for that? Since last April we've known the horror of imagining our son's last moments, it's a thought we've tried to lock deep in the back of our minds since we heard the words "terminal" and "no treatment options". Even locked away, even "making each moment count" we always knew it was there, like a shadow over our small moments of happiness. But imagining and experiencing are never the same thing. How will we possible handle the indescribable sadness of holding our baby as he takes his last breaths? He's 3 years old! He's our baby, we shouldn't have to do this! <br /><br />We asked our nurses if we could be alone and we spent the night crying and cuddling our little boy. We got a phone call around 6:45pm, there was another antibiotic we could try. Just one. Last one. Last hope. Chris sped to the pharmacy to pick it up. We are grasping at straws, but knew we had to try it or we'd never be at peace. He had that first dose on Wednesday night, and yesterday(Friday) his lungs sounded no better, and he still has a fever, though the skin mottling has faded down to just the soles of his feet. Our nurse said kids are like that, they don't give up as easily, they fight, fight, fight, they rally. We don't know yet if it's working or not.<br /><br />We're giving it time, it's all we can do. His breathing is easy, and he's been sleeping a lot, but he's comfy and peaceful and whether this antibiotic works or not, that's all we're asking for.<br /><br />As only someone caring for a terminally ill loved one would understand, we find ourselves torn at times, at all times actually, torn between wanting to try everything and anything on the face of the planet to help him and just, well, just letting him go, letting him be done fighting, letting him be at peace. We know we're losing him, we've been watching him fade. MLD has stolen everything from him, there is really only one more thing for it to steal. When do we just let him be at peace? There is no right answer, there is no wrong answer and our answer is always changing.<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/07/13/1114.jpg'><img src='http://photo.blogpressapp.com/photos/13/07/13/s_1114.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br /><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com27tag:blogger.com,1999:blog-3850351670257978334.post-36393123460913204972013-07-09T18:17:00.001-04:002013-07-09T18:17:36.322-04:00Trying to beat the heatRecently it's been difficult getting Ollie outside for any fresh air. The 95* heat and humidity is just no good when he's having breathing issues. Today however we managed to get out for a nice long wagon walk before it got too warm. :) He was awake and relaxed the entire time(he usually naps).<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/07/09/1997.jpg'><img src='http://photo.blogpressapp.com/photos/13/07/09/s_1997.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/07/09/1998.jpg'><img src='http://photo.blogpressapp.com/photos/13/07/09/s_1998.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/07/09/1999.jpg'><img src='http://photo.blogpressapp.com/photos/13/07/09/s_1999.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br />He started a third type of antibiotic yesterday, but it can take 72 hours to see it's effect. Let's hope the third times a charm!<br /><br /><br />- Posted using BlogPress from my iPad<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com2tag:blogger.com,1999:blog-3850351670257978334.post-60924682314177132602013-07-08T08:41:00.001-04:002013-07-08T08:41:59.297-04:00no improvement <br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/07/08/539.jpg'><img src='http://photo.blogpressapp.com/photos/13/07/08/s_539.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br />Oliver is on his 4th day of the new antibiotic and he woke up with another fever and awful breathing. He's been fighting pneumonia now for over two weeks and we haven't seen any improvement. The antibiotics just can't seem to kick this bout. :(<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com5tag:blogger.com,1999:blog-3850351670257978334.post-57728048710180573592013-06-29T09:58:00.001-04:002013-06-29T09:58:29.123-04:00Face of Pneumonia This is the face of pneumonia. :( <br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/29/640.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/29/s_640.jpg' border='0' width='301' height='400' style='margin:5px'></a></center><br />At least his lips are nice and pink and his oxygen levels are good. He's not struggling to breathe, and he's surprisingly not very junky sounding. We've seen this change in a matter of minutes so we need to keep a really close eye on any signs of respiratory distress.<br /><br />Here's a picture of the butterfly bush that was given to Ollie my one of his favorite nurses. It's starting to bloom. :)<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/29/641.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/29/s_641.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/29/642.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/29/s_642.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com1tag:blogger.com,1999:blog-3850351670257978334.post-9068897677993260602013-06-28T18:12:00.001-04:002013-06-28T18:12:23.424-04:00Losing battleOliver has pneumonia.<br /><br />6th time in 3 months. <br /><br />He only finished his antibiotic on Wednesday and had clear lungs for a total of ONE day. Every bout weakens his lungs more and more making him even more susceptible to it happening again. <br /><br />It's a losing battle. <br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com8tag:blogger.com,1999:blog-3850351670257978334.post-65104999334727253252013-06-27T16:13:00.001-04:002013-06-27T16:13:20.670-04:00All went smoothlyThe procedure was super duper quick and Oliver was a trooper(of course). He wore his batman shirt because batman isn't afraid of GJ tubes. He was very sleepy from a dose of diazepam, there were no complications and the Dr said the tube placement is "perfect". Now we're heading home to rest and recover. Thanks for all your well wishes and prayers.<br /><br /><br /> All done!<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/27/1341.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/27/s_1341.jpg' border='0' width='400' height='299' style='margin:5px'></a></center><br /> Kisses from Dad<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/27/1343.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/27/s_1343.jpg' border='0' width='400' height='299' style='margin:5px'></a></center><br /> Inside my belly<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/27/1345.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/27/s_1345.jpg' border='0' width='400' height='299' style='margin:5px'></a></center><br /> Dad picking me up<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/27/1346.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/27/s_1346.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br /> Batman is all done, time to go<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/27/1347.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/27/s_1347.jpg' border='0' width='299' height='400' style='margin:5px'></a></center><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com1tag:blogger.com,1999:blog-3850351670257978334.post-44940078309314377392013-06-23T14:50:00.001-04:002013-06-23T14:50:49.390-04:00Another rough night We were up with Ollie again last night. Lots of coughing trying to clear his throat and a high fever. Lots of gross suctioning to try and help him. This pneumonia is really taking a lot out of him. I'm not exaggerating when I say he's been sleeping for 4 straight days. We've barely seen him open his eyes at all, and yesterday they looked strange and unfocused again. :( The GJ procedure is still set for Thursday at Connecticut Children's Hospital as long as he doesn't have a fever and he's pretty stable. <br /><br />Here's Ollie being held by his Auntie Angie, along with Grammy, Grampy, Auntie Jess, cousins Tyler and Abby and Uncle Steve all stopped by for a few hours. And I think Uncle Greg will be by later. Ollie loves when everyone fights over holding him. :)<br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/23/1702.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/23/s_1702.jpg' border='0' width='400' height='299' style='margin:5px'></a></center><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com4tag:blogger.com,1999:blog-3850351670257978334.post-66031891947786291672013-06-22T03:42:00.001-04:002013-06-22T12:43:43.365-04:00Early MorningAfter a very uneventful day, with no fever, easy breathing and minimal junkiness we're up with Oliver in the middle of the night battling all three.<br><br>We've used 5 different medicines, suctioned a good deal and now he's hooked up to oxygen and covered in cool wash cloths while I rock him in the brown chair.<br>Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com1tag:blogger.com,1999:blog-3850351670257978334.post-84303427773844977392013-06-21T16:53:00.001-04:002013-06-21T16:53:30.572-04:00His eyes are responsive again! He can see us!<br /><br />And his breathing is improving too.<br /><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com1tag:blogger.com,1999:blog-3850351670257978334.post-29625314163946879152013-06-20T13:16:00.001-04:002013-06-20T13:16:40.020-04:00Pneumonia. We're starting the antibiotic that has worked in the past.<br /><br />And he's unresponsive to a flashlight being shined into his eyes, he's just staring off into space. He might be losing the last of his vision. :(<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com2tag:blogger.com,1999:blog-3850351670257978334.post-37844562475295423502013-06-20T09:39:00.001-04:002013-06-20T09:39:38.717-04:00Rough morningOliver is struggling to breathe this morning. His respirations per minute are very high and he's very junky sounding, at one point his feet started turning blue. We tried postural drainage but he had even more trouble breathing while laying on his side. We've used a few different rescue meds and Daddy is holding him. All signs point to pneumonia. <br /><br />Yesterday we scheduled his GJ tube procedure, it's on the calendar for next Thursday.<br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com3tag:blogger.com,1999:blog-3850351670257978334.post-61234749061162079592013-06-16T18:25:00.001-04:002013-06-16T18:27:27.216-04:00Looking for Ollie CareChris and I need to go back to work in late August so we're working on finding care for Ollie. He'll have his nurse with him at all times to tend to his medical needs, but our insurance won't allow us to leave the nurse alone in the house. (I know, how stupid). <br />So we're looking for someone to cuddle, read books, watch cartoons, play with toys and go for walks with Oliver and his nurse(who is super nice), maybe vacuum and do a load of laundry. The hours will be from 7:45-3:30, except Monday and Thursdays, if he's well enough to go to school on those days, we'll only need the babysitter from 7:45-12:00 because he'll be going to school in the afternoon with his nurse. We'll be able to pay the sitter $9/hour. If you know someone loving, compassionate and reliable, that might be a good babysitter for Ollie, either for a few days a week, or all 5 days, send us a message on his Facebook page or email us at Katecipa@gmail.com.<br /><br /> Thanks Team!<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=13/06/16/2535.jpg'><img src='http://photo.blogpressapp.com/photos/13/06/16/s_2535.jpg' border='0' width='300' height='400' style='margin:5px'></a></center><br /><br />- Posted using BlogPress from my iPad<br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com2tag:blogger.com,1999:blog-3850351670257978334.post-3410720733049475612013-06-08T07:32:00.001-04:002013-06-08T07:32:20.013-04:00Close callI don't have the emotional energy to write a long post but I thought a quick update was needed. A few days ago Ollie started having major seizures again, despite the fact that he's on 3 different anti seizure medications. One episode was so intense that he completely stopped breathing. He almost died, we starred down at his sweet pale face, absolutely helpless and waited for him, begged him, to take a breath, he just laid there lifeless for nearly a minute. Until out of nowhere, something in his brain finally decided "No, I'm not ready yet, I'm going to keep on fighting" and he started breathing again. <br /><br />His hospice team suggested we start discussing final arrangements for him, because although we could very well have years and months to love and hold him, we could also lose him at any moment. You just never know with MLD. Late infantile MLD takes children as young as 2.5 years old and as old as 9, the average is 4.8years old. Ollie's MLD is among the faster progressing mutations so we truly need to enjoy every minute we have with him.<br /><br />But how do we plan final arrangements for our 3 year old son? Our sweet baby boy? How do we sit down and discuss the unthinkable? He just joined us in this world a few short years ago, how unfair that his journey should end so soon. How do we talk about him being in a cemetery as we rock him to sleep in our arms? No parent should ever, ever, have to do this. We're hurting right now, hearts, souls and bodies. Our hearts break a little more with each passing day. <br /><br /><br />Katie and Chrishttp://www.blogger.com/profile/00240721524428188625noreply@blogger.com6