tag:blogger.com,1999:blog-196473402024-03-04T20:17:51.106-08:00Casey's BlogCasey Erin Barnes - Born April 23rd, 2006
Casey is a special needs child with a lot of complications. This blog is all about her challenges, victories and life. This blog is written from a parents point of view.Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comBlogger456125tag:blogger.com,1999:blog-19647340.post-45748133065095645222015-07-07T11:34:00.002-07:002015-07-07T11:34:32.329-07:00Updated SiteWe have made some updates on Casey's main webpage- caseybarnes.org. We will leave this blog up for anyone that may have saved links to direct posts, but all future posts will be done within <a href="http://www.caseybarnes.org/">Casey's page</a>. All of the past post have been copied to her page as well. Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-81845753819163791802015-07-03T18:55:00.000-07:002015-07-03T18:55:04.141-07:00Swimming Pools & Movie Stars...A few weeks ago we were asked to be part of a pretty cool project. There is a new website going up for families like ours (with kids that have special needs). This website is all about support for parents, and not so focused on diagnosis and medical details. The website uses videos to share ideas, inspiration and offer support. They wanted to come out and capture a day in the life of Casey. They came out last week to meet us and get an idea of some of the things they wanted to include. They saw that Casey is all personality and has a bunch of friends. They asked if we would be willing to have some friends over and let them get Casey being 'one of the girls' in the pool with her friends. We try to do this a lot anyway, so of course we loved the idea.<br />
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As luck would have it, one of our friends for Los Angeles is in town right now and asked if they could come by today. We explained that a film crew would be here, but if they were okay with it come on over. Casey got to hang out with her very first friend, Patricio, and his little sister, Alejandra. She was so happy to see them. Last time they were in town Alejandra was much younger. She and Casey took to each other right away. It's pretty special to watch other kids and how they connect with Casey.<br />
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After our friends from LA had to get on the road so we took a quick lunch break and then some of our friends from the neighborhood came over to swim and play. Casey's little friends were pretty excited about being in a movie with Casey. <br />
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We all played in the pool for a little while so they could get some footage of Casey with her friends. After, Casey went to the swing for a little bit for some other shots they wanted to capture. Casey's friend got to do an interview on what it's like to be Casey's friends. It was pretty cute to watch them do their interview.<br />
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When we finished outside we had a few more shots to get inside. The girls came in and read Casey a story and Berkley made sure that the camera man got everyone's good sides. <br />
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Casey has some pretty great friends and spending an entire day with friends (morning and afternoon) was wonderful. She had such a great day. When she has a good day, we have a good day. The footage is on it's way to editing now. Once we get a link to the final footage we will share it. <br />
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We hope everyone has a fun and safe 4th of July!Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-75029431585244287052015-06-28T00:34:00.000-07:002015-06-28T00:34:13.892-07:00Summer is Finally Here!The weather has been crazy this year. I know we needed the rain, but I was starting the wonder if it was ever going to stop. Usually by this time of year we have had multiple 100+ degree days, everyone is either tan or burned, no one wants to get in their car if it has been outside for more than 5 minutes, and there is no doubt that it is a Texas summer. This year has been wet and fairly cool. The few times the sun has come out, I have either been sick or sleeping from doing so many night shifts lately. Poor Casey was starting to have pool withdrawals.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigS6UzO9_Af5WtunTFSsDswKQbcQKn5PeNehlQjlBObRMO3jrv-hIcJtIfvc6rOQH4sO_NEeZ9lhke0wj2KEK3id9iQFMHuvmQ5Qq0gWkbwtpeoBRK0kp6c2S1Y-3e6wXsrsvO-w/s1600/summertime.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigS6UzO9_Af5WtunTFSsDswKQbcQKn5PeNehlQjlBObRMO3jrv-hIcJtIfvc6rOQH4sO_NEeZ9lhke0wj2KEK3id9iQFMHuvmQ5Qq0gWkbwtpeoBRK0kp6c2S1Y-3e6wXsrsvO-w/s320/summertime.jpg" width="320" /></a>Friday was a beautiful day. I promised Casey that as soon as I got up I would take her swimming. She had been bugging her nurse to go out to the pool all morning and was so excited when I brought in her swimsuit to get her ready. <br />
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We were only out there for maybe 30 minutes, but she was so happy. After the pool she got to sunbath a little too. She is so funny. Before her pool she hated to go outside at all. Now, she doesn't want to come back in. Hopefully this week the weather hold up and she can have some friends come and swim with her. The only thing better than pool time is pool time with her friends. <br />
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Casey got to visit with her Uncle Dan this past week. Tim is one of seven and I am one of four. That makes for a lot of aunts and uncles, and bunches of cousins. Casey has now met all of Tim and my siblings. She was in a funny mood when he was here, really quiet and tired. His job has him just up the road fairly often over the next year or so, so hopefully he can see more of her personality on his next visit. Her uncle Ken may be in town again soon too. I know it's hard to fit family in when you are traveling for work, but we do love that some of Tim's family comes our way for work on occasion. It's a nice little treat. <br />
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We have a few doctor appointments this week, including the puberty doctor. Hopefully we will have some good updates in the next few days.<br />
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We are still having some trouble getting our night shifts covered- hence my 2:30AM post. We have a nurse that is picking up Wednesday thru Friday that just started last week. She only works 3 days a week, and she has already called out twice and had one day that she could not work. I am hoping that is not a sign of things to come, but I am going to see how things go this week. Our Monday and Tuesday night nurse has been picking up some extra shifts on Wednesdays lately so we went from 3 nights covered a week to 4 (really since the new nurse hasn't done her full 3 nights yet). It's not ideal, but at least it's something. We still need to find a nurse to pick up Saturday and Sunday nights. Hopefully the agency we use can find someone for us soon. <br />
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I think that is about it for now. We hope everyone has a great week!Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-55724708262804282892015-06-20T00:35:00.000-07:002015-06-21T00:43:26.038-07:00Medical Stuff<b>Disclaimer:</b><br />
<i>This post is for those that like to read about science and medicine and want to know more about what is going on with Casey medically- as opposed to our normal social or general updates. If you like to read the medical stuff, read on. If you are bored with this type of detail you may want to skip this post.</i><br />
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Many of you have heard me joke that we add at least 1 new diagnosis every 6 months and at least 1 new specialist every year. While I say it jokingly, it really is true. Today's appointment was one of these instances. <br />
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Earlier this year Casey had a CT scan to look at her cholesteotoma, but they were also looking at an odd dent that we noticed along Casey's skull. When we saw the ENT to follow up on the ear issues they didn't really have much to offer in regards to the dent readings in the scan. We have been trying to get in to see Casey's physical medicine doctor for a few months now. Life keeps happening and we have had to reschedule a few times, but we finally went and talked to him this morning.<br />
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He explained the dent and told us what it means moving forward. Basically the skull has fissures that allow the skull to grow in all directions as the brain grows. When Casey was born she had a lot of <a href="https://en.wikipedia.org/?title=Necrosis">necrosis </a>throughout her brain. The lack of oxygen caused Casey's brain to swell, much like a sprained ankle would. As it swelled against the skull parts of the brain started to die. This is very common with brain injuries. After the swelling goes down doctors use MRIs and other images to determine the extent of the damage. For Casey the damage was severe and global (affecting all areas of her brain). Some brain cells will regrow on their own, and we helped Casey as much as we could with treatments like stem cells, hyperbaric oxygen therapy, etc. While some of Casey's cells did regrow, she lost a lot and all of her medical complications are a result of that part of her brain not being healthy/complete. This is something we have known since very early on. We are now learning some of the long term effects of this type of injury/damage.<br />
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As Casey grew there was a lot of empty space in skull. The ventricals that come in from the spine and feed the brain stem saw the extra space and spread out if you will. In some kids the ventricals swell or become enlarged with fluids and if there is not extra space in the skull the fluids can cause pressure against the skull and lead to damage. For these kids they are diagnoses with Hydrocephalyis and typically they need a shunt placed in their brain to drain the fluid and relieve the pressure. This is <b>NOT</b> what we are seeing with Casey. Casey has the much lesser severe side of an enlarged ventrical that the doctor referred to as <a href="http://childrensnational.org/choose-childrens/conditions-and-treatments/fetal-carepregnancy/ventriculomegaly">Ventriculomegaly</a>. Since there is extra space in Casey's skull and the enlarged ventricals are not causing additional complications we simply make note of it, but there is no treatment needed. This has likely been something that Casey has had since very early on, but this was the first time someone really went over it with us since it was identified in her recent CT scan.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiReRvd8jo_-vZDdKsV6rjXS2mk7Dsvv0N96orTq8U0VhGynAY_GAoW6goZW33Sjo3rzoOvlJPkMR0ytjE3oVVi7XRzXXGwfoX5RGN_BhK6M27iPmU3k_ncOyrBDm2ypCTiok__Dw/s1600/cranio.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiReRvd8jo_-vZDdKsV6rjXS2mk7Dsvv0N96orTq8U0VhGynAY_GAoW6goZW33Sjo3rzoOvlJPkMR0ytjE3oVVi7XRzXXGwfoX5RGN_BhK6M27iPmU3k_ncOyrBDm2ypCTiok__Dw/s320/cranio.jpg" width="320" /></a>Ventriculomegaly does not explain her dent though. The dent was actually explained as <a href="http://www.mayoclinic.org/diseases-conditions/craniosynostosis/basics/definition/con-20032917">Craniosynostosis</a>. Again, since there was extra space in Casey's skull her brain did not trigger the skull to grow evenly in all directions. Casey's skull has grown lengthwise as her brain has developed, but the width has stayed stationary. The lack of growth along the inactive fissures led to the fissures fussing along the base of her skull. Most likely these fissures fused a long time ago. All of Casey's recent growth spurts have led to the unfused fissures to grow as they should, but have made the dent along the fused fissures noticeable. The craniosynostosis not only explains her long thin head shape, but it also explains a few other things. Casey's pallet is very high and narrow, and has gotten more so over time. As Casey has grown the facial bones, such as her pallet, have moved into the extra space in her skull. It stands to reason that Casey's chronic ear infections and the cholesteotoma are also very likely related to how her skull and features have grown and shaped around the extra space, in particular the <a href="https://en.wikipedia.org/?title=Eustachian_tube">eustachian tubes</a>.<br />
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The doctor told us that in some cases patients follow up with a neurosurgeon that can reshape the skull and/or the deformed growths. I told him that there is nothing that anyone could do that would be worth the risk of brain surgery for Casey. He quickly and strongly agreed that the surgery path does not make sense for Casey. Much like the Ventriculomegaly, the Craniosynostosis is something that we are now aware of, it has been here for likely a very long, and there is no treatment necessary.<br />
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So we have 2 new diagnosis, newly labeled even though they are not new issues with Casey. Luckily these do not include a new specialist. Heck, these don't even include a treatment plan- just a little education.<br />
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We talked about another possible diagnosis to add to Casey's list. This one is not actually added to the list yet, but something for us to examine further. Casey has always had an issue where she can go from relaxed and happy to totally out of control in seconds. Sometimes we think this may be a result of pain, sometimes we have contributed this to respiratory distress, and other times we have been left scratching our heads as we have no clue what triggered it and nothing we do seems to help get her to calm down. When she was younger we had her on some anti-anxiety medications that are often used to help treat seizures and hi tone as well. While this medicine did help keep her relaxed, she was too relaxed. Casey slept all the time. We eventually took her off of this medication. When she had her J tube surgery in 2013 the doctors added a similar drug when Casey was not responding to pain medications after the surgery. The first few days on the new drug were great, but after a few days she started sleeping all the time again. We could not wake her up at all. We ended up taking her off of that drug and with the help of her neuro we found a "cousin drug" that did not have the same sedating side effect. We have used it for about 2 years now and it has helped a lot. We use it at night to take the edge off and help her get good sleep. We also use it on occasion when she has her freak outs that don't seem to respond to any other treatment.<br />
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We told him about how we use this drug and that it really is the only thing that helps Casey stayed relaxed enough to not cause further contractions and joint issues from her freak outs. The doctor talked to us about <a href="http://www.dysautonomiainternational.org/page.php?ID=34">Dysautonomia</a>. He said many brain injury patients have this and it effects their fight or flight reflexes in a very dramatic way. These patients will go from calm to completely freaked out quickly- much like we see with Casey. Again, some of these episodes with Casey are likely pain and/or respiratory related, but I think it's very possible some may not. He went on to talk about some of the other triggers that he sees with dysautonomia episodes. In many cases they will see elevated heart rates, increased blood pressure, GI issues/reflux, extreme sweating, and many other things. We have been dealing with body odor and odd sweating with Casey for many years. We originally thought the body odor was possibly early puberty, but many years ago all we saw was the BO and she didn't have other puberty symptoms. She does now, but for many years it was just the BO. The doctor went on to talk about how this condition is deep rooted in the brain and is not a learned behavior, but really a reflex. Casey is missing her gag, suck, swallow and blink reflex. When I look at the big picture of everything that he told me about dysautonomia I am very intreged and want to learn more. <br />
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Casey did not get the 3rd diagnosis, dysautonomia, added today. We are going to do some of our own research and talk with her neuro in a few weeks when we go in to discuss the recent EEG. It's possible that this is something Casey has, and it may explain a few things. On the other hand, it may not. Tim and I have some homework/research to do and I am sure that will lead to many questions to review with her doctors.<br />
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On the puberty topic, we are adding a new specialist later this month. In addition to the BO, we are seeing many other symptoms now as well. Earlier this year we had a care conference with many of Casey's doctors. When we brought up our puberty concerns they told us about a specialists that treats complex kids like Casey. We are looking forward to talking to her and getting a better plan in place for the day that we know is coming soon. We really worry about complications that may come with full puberty. We are already seeing increased seizures that may be related, but if Casey has cramps and other pains associated, or if she is at risk for infections and other issues we need to be aware and ready.<br />
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We have 2, possibly 3 new diagnosis and a new specialists on tap for June. I hope that covers us for a while now. We've filled our quota :)Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-66652394206139296552015-06-18T11:46:00.000-07:002015-06-18T11:56:59.867-07:00Rough Few WeeksIt has been a long, rough few weeks around here. One of our night nurses that was working 5 nights a week was not working out. Early May we decided to let her go. The agency we use sent out a couple of nurses, but none that worked out. Luckily our other night nurse has been picking up an extra night each week. That still leaves me with 4 nights a week that I am up all night with Casey. I wish she was a kid that I could just sleep in her room and be there if she needs me, but she really needs someone awake all night. Between suctioning, medicine, her food, diapers, oxygen, positioning and occasional breathing treatments she keeps me busy all night. I usually drag Tim out of bed around 6 and he takes her until the day nurse comes in at 8.<br />
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Used to I would sleep from 6-10:30ish after a night shift and I would be okay. Since I have had to do so many lately 10:30 has moved to 12:30 then as late as 1-1:30 on a lot of days. My immune system is very weak when I am not sleeping well too. I started to get sick mid-late May. The doctor told me it was just a respiratory infection, gave me a round of antibiotics and sent me on my way. When I was not better after 2 weeks I went back and they gave me another antibiotic and added an inhaler. A couple days later I was feeling even worse so they sent me for a chest xray. As luck would have it, I ended up with pneumonia. Not walking pneumonia, the full pneumonia.<br />
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I have been miserable!!! I finally got a few good nights in this week and yesterday was the first day I actually got out and didn't cancel everything on my calendar. Poor Casey has missed so much. I have canceled/rescheduled every appointment, every activity, everything for the past 5 weeks now.<br />
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Our close friends had their baby last week. The plan was that we would keep their daughter, Casey's "sister", while they were in the hospital. Casey and Sam were both so excited about their slumber party. I got the room ready and took a nap, hoping to feel better by the time I got up. Casey was looking forward to having Sam come over all day. If you talked about her slumber party she would get all excited. The doctor called with the xray results late that afternoon. I talked to my friend and we all agreed, especially with the baby, that it would be best to postpone the slumber party. Casey was bummed, but luckily she is pretty forgiving. I promised she could still have her slumber party, but it will just have to be this summer sometime. I am sure with the new baby that Sam's mom will be more than happy to have us take her for a night and give them a little break.<br />
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Casey is wrapping up a 72 hour Video EEG right now. Someone came out to the house Tuesday morning and got her all wired up. Her head is covered in electrodes. They setup a video camera in our living room and another in her room. It's great that we can do this at home and don't have to check in to the hospital. Casey is not a fan of the electrodes, but she is doing the best she can to tolerate them. They come early tomorrow morning to take them off and pack up all the equipment.<br />
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Casey has had more seizures lately and her <br />
seizures are changing too. Part may be just her growing, part may be that she is starting to show early signs of puberty, part may even be the crazy weather we have seen lately. So many things can effect her seizures. We hope that the doctors are able to get some good information from this test and that we can get a better plan for moving forward.<br />
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We have a few routine appointments over the next few weeks for Casey (many that should have happened over the recent weeks but were rescheduled). We also have a new nurse that started last night. I will be up training her this week and hopefully by this time next week I can get a little more sleep. She is only taking 3 nights, so we are still on the hunt for a nurse to pick up the other 2. I am very hopeful that this one will work out. Please keep your fingers crossed that she is a good fit and picks up on Casey's need quickly. I am ready to get back to our normal schedules and routines- especially the sleeping at night part.<br />
<br />Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-76498285055822992112015-05-28T12:23:00.001-07:002015-05-28T12:23:32.939-07:00Casey's 9th Birthday PartyOn Saturday, April 25th, Casey had a fun birthday party in the <a href="http://www.roundrocktexas.gov/departments/parks-and-recreation/parks-trails/play-park/">park</a>. A bunch of her friends came and we had a pavilion all to ourselves. The kids played games, a clown came to paint faces & make balloon shapes, and we of course had cake. It was really hot that day. When we first got there and were setting up Casey got a bit overheated. We had to take her back to the car and blast the AC for a little bit to cool her down. When she was finally cool enough to try again we dipped her drool cloth into the melted ice in the cooler and kept that around her neck (re-dipping every few minutes). The cool rag helped a lot. Towards the end of the party she did get a bit overheated again. We decided to wrap things up and get her into the AC to stay. She loves to be around her friends, but the weather takes such a toll. She has always been sensitive to heat and I think the older she gets the more sensitive.<br />
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Casey spent the rest of the afternoon/evening recovering from the party. We had the house as cold as we could get it and she just rested. She seemed to be much better by the next morning.<br />
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We had the cake done by <a href="http://www.icingsmiles.org/">Icing Smiles</a> again this year. It's a great program for kids like Casey. I was a little worried. The baker that signed up to do Casey's cake had to cancel last minute when her son got sick. Luckily she has friends that are also bakers and was able to get someone to take over. Everything worked out great and the cake and cupcakes were a huge hit.<br />
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The original clown that we hired had to cancel as well due to a schedule conflict. Luckily she had a clown that could take over for her. The kids loved <a href="http://devotheclown.tripod.com/">Devo the Clown</a>. We even had a party crasher. One little girl playing in the park decided that we were having way to much fun so she just wondered in and got in line to get her face painted with the rest of the party. <br />
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We didn't take a lot of pictures at the party, but here are a few:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6Ysh7ZoMDk_SiRhU91YiH39X003C0zJP5h0Hz9DRyU4-YxS8BUxblYaA8-adnBBMa1iQNFhBkQHGblrfB79kwUzLHHEb8r78tOTNVRxOe_f2ponGoCKOxCQEWktXhU4ItSRTNUg/s1600/IMG_0356.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6Ysh7ZoMDk_SiRhU91YiH39X003C0zJP5h0Hz9DRyU4-YxS8BUxblYaA8-adnBBMa1iQNFhBkQHGblrfB79kwUzLHHEb8r78tOTNVRxOe_f2ponGoCKOxCQEWktXhU4ItSRTNUg/s320/IMG_0356.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Casey with her baker and the cake in the background</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIU5oMh5UowBLWrjIPIdwJ6d3R6BsR-7eI2PwCPy9nzZgg-Jys7dB387GbBS86VxuuEFK_buayrIgQ7PxjfgkHF_fBRhiyu_eV5F3M1f5XkkQGMmNXjsKPcRrLFvaFGUaUdMglXQ/s1600/IMG_0355.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIU5oMh5UowBLWrjIPIdwJ6d3R6BsR-7eI2PwCPy9nzZgg-Jys7dB387GbBS86VxuuEFK_buayrIgQ7PxjfgkHF_fBRhiyu_eV5F3M1f5XkkQGMmNXjsKPcRrLFvaFGUaUdMglXQ/s320/IMG_0355.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A quick family pic</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUaWQyJgA8Wmtv7sJ_8MppTrL2fT7A8mPU_w5I5QX1XZWuDvbsX1hQ-E_aqQyYpJNkNdHE2BudwoXs1YYjfvO5seg2tYm2j8xEj1d7wJr8tMtFJQtNZGthy6ZCXxgV5Y9-xM2jDw/s1600/IMG_0370.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUaWQyJgA8Wmtv7sJ_8MppTrL2fT7A8mPU_w5I5QX1XZWuDvbsX1hQ-E_aqQyYpJNkNdHE2BudwoXs1YYjfvO5seg2tYm2j8xEj1d7wJr8tMtFJQtNZGthy6ZCXxgV5Y9-xM2jDw/s320/IMG_0370.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A very hot Casey</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kids in line for face painting</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Casey with Devo</td></tr>
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<br />Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-28003391515709322062015-04-18T08:55:00.000-07:002015-04-18T08:55:13.382-07:00Easter, Ponies and More...Wednesday night after the nurse came in Tim and I both crashed into bed. It felt like it had been such a long week, then we were reminded it was only Wednesday!!! We have been going nonstop since our last post. Some good, some not so good, some medical, really it has been some of everything over the past month.<br />
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The weekend before Easter the local accessible play ground, Play for All, had their annual special needs egg hunt. We have been able to take Casey since the program started 3 years ago. She really had a good time. It is open to children with special needs and their siblings. Casey takes her honorary little sister to help her collect her eggs. I am not sure which one has more fun. After the egg hunt we went for an early lunch and Casey had a great time. She loves to go out to eat even though she doesn't eat. I guess she just likes the feel of a restaurant.<br />
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A few days after the egg hunt we met with anesthesia up at the hospital. Palliative joined us so that we could all talk about our concerns with any procedure, but specifically the CT scan that she needed for her cholesteotoma. We had sent a letter before hand (a very long one) that laid out our concerns. I never know what to expect when we do this. I HOPE that the specialist reads what I write before hand and puts some thought into my concerns. There have been so many times in the hospital over the years that doctors have come in and not bothered to read Casey's chart and notes at all. Many times they come in and all they have read is her name so they refer to her as "him" or "our son". While we hoped that the letter had been read, we were ready to have to explain everything in detail and put up a huge fight to get them to work with us on the scan. To our surprise things went very different. Not only had they read the letter, but they had studied it, talked to other members of Casey's medical team, and offered the ideal solution to us with out us having to fight for it at all. They said they thought with Casey's issues that it would be best for us to position her, for us to manage her airway, and for us to stay by her side the entire time. That is EVERYTHING we asked for. When we got on the elevator to go home after this meeting we were kind of speechless. Casey's nurse finally said "wow, that was almost too easy." We felt so much better about the scan after the meeting and agreed to set it up.<br />
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The Saturday before Easter Tim had to head to India for his annual work trip. It is always hard when he is gone. He is stressed and worried about Casey getting sick while he is gone, a nurse calling out and me not getting a break or sleep, etc. And I am exhausted, even with the nurses covering all of their shifts, just having to be the only parent for a week. Luckily, Casey did pretty good MOST of the time while he was gone. We set up a full week of fun stuff to try to keep her busy so she would not freak out when she realized Daddy had not been around in a few days.<br />
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Monday we took Casey to a miniature horse farm that one of her friends told her about, Northwind Farm. They have a special adaption program for kids with special needs. For a monthly fee Casey is able to adapt one of the ponies and then she can go visit as often as she likes (or in our case as often as she is up for it). She met all 12 of the ponies and picked the last one she met, Lil Red. We have not been back yet, but hopefully we will make it out there this week sometime. Tuesday was not a good day, but on Wednesday she had music. She made great choices, she sang, Wednesday was a good day. On Thursday she got to talk to Daddy when he called as she was waking up, so that set her up for a pretty good day. She did school and then some of her little friends came by that evening with dinner. She always loves to see her friends. On Friday we took her to see 'Home'. She loved the movie. She stayed awake the entire time, she was chatty at all the funny parts. She seemed to really enjoy the movie. She was wiped out after and not able to make it to her Girl Scout meeting, but she recovered by early evening.<br />
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On Saturday she got to watch ponies on the big TV (the new season started Easter weekend). Then my family came over for a visit. She got to hang out with her Cappy, Grandpa John, Great Grandpa and aunts Megan & Molly. She even got to have some chocolate cake (or at least the icing). Cappy & Grandpa John stayed the night, but everyone else left that afternoon. Casey's cousin was running the Cap10K on Sunday morning so everyone had to get home for some sleep before the race. He finished 2nd in his age group and 80th overall. I think there was over 25K runners, so that's kind of awesome. Way to go, Riley. After the race Cappy & Grandpa John came by to tell us about it, then the had to get back to Houston. Casey and I just relaxed Sunday afternoon and then Daddy got home just before dinner. <br />
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Tim was pretty tired after traveling so he spent a little time with Casey then went to bed early. Monday was her CT scan, so Tim took the day off in order to go with us, and recover from traveling some. The scan itself went really well. They were ready for us, they let us get her positioned, then her nurse and I stayed with her. She was so brave. When the tube started spinning and they moved her into is, she did get scared. She cried a little. Her nurse was on one side and I was on the other and we talked to her the entire time. She got through it and then Daddy came in and picked her up to snuggle. She was not happy about it at all. The rest of Monday we just let her rest and watch movies on her iPad.<br />
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Tuesday she finally made it back to dance. She was so excited to see her friends. She has not been back to dance since her recital in February. They took a break, and she has not been up to going since they started back up. I was really glad she finally made it this week.<br />
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On Wednesday after school we took her to the ENT to have her ears checked and to review the scan results. The scan showed that the cholesteotoma is not is a critical state. We can continue as we have been with regular cleaning and monitoring. That is the best outcome and what we were hoping to hear. We will have to do another scan 6-12 months from now, but her doctor is happy to keep going as we have been.<br />
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Yesterday and this morning Casey has been having a hard time breathing. She is on bipap right now and it looks like it is already helping. We are planning on laying low over the next few days so she has a great birthday and a great birthday party next weekend. Hopefully the weather cooperates as well. Here are a few pictures from the egg hunt and the pony farm. We will post more after her party. Until then, we hope everyone is doing well.<br />
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Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-87925450589544054272015-03-25T14:11:00.003-07:002015-03-25T14:11:43.937-07:00Spring BreakLast week was Spring Break. Casey wasn't feeling well for most of the week. We did a more accurate culture on her respiratory issues and started some new medications last week. She is getting an antibiotic as well as an inhaled antibiotic to try to help get this crud out of her lungs and her lungs back open. The good news is that the drugs do seem to be helping, the bad news is that in order for them to help she does have a few bad days as she starts to clear the stuff out. By Friday though she was able to be off of the oxygen some during the day.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDF0LVvXKYrUob00DK3o6tJNxOATs_-A5D-g2Q9pggMv4r4BEMyitRtneYUT2IKfrsmRUI-zPpIxzs9DfsyOt4kfS3QPei9yPuSE3DT_bvK07jmeMieEiGcuF6z8lzBn0i0zD7sg/s1600/20150320_124736.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDF0LVvXKYrUob00DK3o6tJNxOATs_-A5D-g2Q9pggMv4r4BEMyitRtneYUT2IKfrsmRUI-zPpIxzs9DfsyOt4kfS3QPei9yPuSE3DT_bvK07jmeMieEiGcuF6z8lzBn0i0zD7sg/s1600/20150320_124736.jpg" height="320" width="180" /></a>Casey's Girl Scout troop went to see the new Cinderella movie Friday morning. Casey was so excited to go hang out with her friends. She LOVED the Frozen short, then fell asleep for the first half of Cinderella. She did wake up in time for the ball though (that is the only part she really cares about anyway since this version didn't have singing). The battery on her suction machine was not cooperating though so we had to head out as soon as the movie ended. She wasn't happy about not getting to hang out with her friends like she had planned, so we stopped for ice cream on the way home to make up for it. Once we got to the car we could plug in for power. We stopped at Sonic and she and I split a chocolate shake. She is so much like her daddy- she LOVES ice cream. In the picture, she is hanging out in the car enjoying her shake (it's hard to tell in the picture so I thought I would explain).<br />
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On Saturday she was in a pretty good mood. One of her nurses was coming over so Tim and I could go out and Casey was very excited about having a fun night with her nurse. They did some Easter crafts and watched some movies.<br />
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Sunday morning Casey was not great, she took a little step back and was needing more respiratory help that the few days before. We were able to get her off of oxygen around lunch. A little friend of hers that lives next door invited Casey to get a pedicure with her at a nearby salon. When I asked Casey if she wanted to go, she gave me a very strong YES! We met our neighbors at the salon and Casey had a great time. She got the entire experience with the foot/calf message and all. Her friend picked a hot pink polish that they both used. Her friend had actually just gone to the movie that morning with her mom and came very well dressed in her Frozen dress. She and Casey are both total divas and get along great.<br />
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We are starting to plan Casey's birthday. I still can not believe she is almost 9!!!! We decided to get another <a href="http://www.icingsmiles.org/">Icing Smiles</a> cake this year. She had her dream cake a few years ago (the <a href="http://barnesbaby.blogspot.com/2013/04/family-birthday-celebration.html">amazing My Little Pony cake</a>). This year she will get a fun cake. They just confirmed her baker yesterday. It's kind of cool how it works. You put in your child's information on an Icing Smiles form. Then if you qualify they have regional people that start contacting bakers in your area. Then a baker will volunteer to provide the cake. Casey's cake will come from <a href="http://nyocakes.com/">Not Your Ordinary Cakes</a> this year. I am really excited to see what she comes up with. This year her theme is Spring. Lots of flowers, pink, purple, butterflies, all the girly stuff Casey likes.<br />
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We are still working out a date to go meet with anesthesia about potentially getting Casey's CT done. There is not much to update in that area right now though. When we know more we will share.Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-74830102638737916552015-03-02T15:57:00.000-08:002015-03-02T15:57:35.384-08:00Mommy's Day OffI occasionally take a few hours here and there for myself. I may grab a long lunch with some girlfriends, catch a movie, get my hair done, I have even been able to join friends for the rare evening out a couple of time. Usually I am gone for a few hours at the most. I typically have to get back to relieve the nurse if Tim is working, or relieve Tim if he is on Casey duty. I decided that Sunday I was going to take more than a few hours and instead I took an entire day for myself. Granted, it took a lot of planning, but it was a great day and just what I needed. <br />
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Tim and I just have the one car- the wheelchair modified minivan. Since I was going to be gone all day I didn't want to take our only car (especially if he needed it for Casey while I was gone). We rented a little car for me to have so he could keep the van. We scheduled a nurse to come in for most of the day so Tim would still be able to get his stuff done too. Tim picked up the rental car Saturday (thanks to a friend that was nice enough to take him to the rental office). <br />
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<i>If anyone is looking to rent a car, do NOT use Hertz. They made a mess of our reservation. Tim ended up going down the street to <a href="https://www.enterprise.com/">Enterprise</a> and we had MUCH better service there. From now on Enterprise will be our first call when we need to rent a car. </i><br />
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On Sunday I got up bright and early and hit the road for Dallas around 6:30. The weather was awful, but luckily the roads were just wet, not frozen. I went to visit my baby sister and her family first. She is a <a href="http://dictionary.reference.com/browse/surrogate">surrogate</a> for a family and VERY pregnant with twins right now. She has been on bed rest for a few weeks now. I am so proud of her for doing such a wonderful thing and was excited to finally get to see their "new" house. I say new, but they have been there for over a year now. Lucky for her, Casey saved a couple boxes of thin mints just to get her over the hump until these babies get here. <br />
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After a short visit with my sister I drove into downtown Dallas to see my sister-in-law and my niece. It had been around 5 years since I last saw them. When I found out that Allie would be performing in Dallas for a dance competition I really wanted to find a way to get out there to see them. <br />
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I spent the afternoon watches dance teams compete, and I got to see my niece, Allie, dance. There was some really great performances. I felt like I was watching a live taping of America's Got Talent. <a href="http://www.m2dancecenter.com/performance-groups/danzforce/">Allie's team </a>did great in both of their categories, but nailed their jazz dance. I really thought they had won that one, but I was still pretty excited when they came in second (they won in my book). <br />
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Between performances I was able to catch up with Jen, my SIL. Since the first time I met Jen she and I just clicked. She's one of those people that I can always count on, and whether it's been 5 days or 5 years, we can just pick up right where we left off. After all of the performances were completed I stuck around and joined the team for dinner. I was able to spend a little more time with Allie too.<br />
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I considered staying over since I knew Casey was in good hands at home, but if I stayed I would have had to get up really early to get back to Austin in time to return the car. I am used to staying up when night nurses call out and my wall is 4-4:30. As long as I left early enough to be home before 4 I knew I would be fine. Around 11-11:30 I took Jen and Allie back to their hotel and hit the road back to Austin. I got home around 1:30 and had a really easy drive back. <br />
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I know it will be a while before I take another day for myself, but I really had a great day visiting family yesterday. The best part was that when I got home, Casey was sound asleep and looked great. She had a good day. She and Tim even got to play some guitar. She loves to rock out with Daddy. <br />
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This morning I took the car back (again, thanks to a wonderful friend that was nice enough to pick me up) and now it's back to my normal routine. There was a nasty accident on the highway this morning that I totally would have gotten stuck in if I had driven back this morning too. Casey has a few appointments this week. I will try to do a medical update post sometime by the weekend. Until then, we hope everyone has a great week and that the dance team has a safe trip back home to Indiana.<br />
Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-80522428856004202202015-02-26T10:49:00.000-08:002015-02-26T10:49:07.812-08:00Tiny DancerCasey had her 3rd dance recital on Sunday. I can't believe she has been my little dancing princess for 3 years now. I can't believe she is turning 9 this April either! The time has gone way too fast. Last year the dance recital was kind of a disaster. Casey was not doing well and then when we put her in a loud crowded room she had a huge meltdown. She had an audience full of people to cheer her on and she basically rolled across the stage then straight back to the car and home. She missed trophies, she didn't see any of her guest, it was just a mess. <br />
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This year we planned for the meltdown. We set up a little spot in a quiet hallway just for her. She was able to relax and have limited stimulus before getting in costume and going on stage. We then slowly got her ready and loaded into her chair just in time to take the stage with her group. She did great. After her performance we kept her in her dress but went back to her quiet spot for a little break. As the show was wrapping up (we could hear the music from our spot) we got her backstage so she could go back out with the group to get her trophy. Everyone goes out at the end together. It gets loud and a little hectic so she started to get worked up while on stage to get her trophy. As soon as she came back off we did all we could, but the meltdown was underway. She made it to the end though, so it was MUCH better than last year. <br />
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A cold front came through while we were there so it was really cold when we left. We changed Casey out of her dress and into comfortable clothes then ran to the car. By the time we got her home she was in full meltdown mode. Her heart rate was really high and she was not breathing well. We got her some oxygen and medicine and tried to get her to calm down on the couch while we got her bed ready.<br />
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My mom, her husband, my grandpa, my sister and her friend had come back to the house with us to celebrate my mom's birthday while they were in town. Casey wasn't feeling much like celebrating so we got her to bed as quick as we could. Once she settled into bed she started to look a lot better. The past few days she has been sleeping a lot and recovering from her big day. It's a hard balance. She loves dance and we want to find ways for her to do as many fun things as we can. Each thing is always so hard on her though. There is always a price to pay and finding the balance of when to do the extra stuff or when to skip it is really hard. I talk to a lot of other moms with kids like Casey and they have the same balance issues. Unfortunately there is not an easy/obvious answer. We have to just trust our gut instincts and plan on recovery times after special events. We try to plan ahead with quiet areas and things like this as much as we can too and that helps. It's just so hard to know when to be the over protective mom and when to just go for it. <br />
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Hopefully with a few more days recovering she will be feeling much better. Each day she looks a little better than the day before, so we are going in the right direction. Here are some pictures from the show. I'll do another post in the next few days with medical updates and any other stuff I left out of this post.<br />
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<tr><td class="tr-caption" style="text-align: center;">Casey's Performance</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Trophy Time</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Casey's Group on Stage</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Casey Before the Show</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Hair/Tiara</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My 2 Favorite People</td></tr>
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Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-20719276703064990792015-02-11T15:47:00.002-08:002015-02-11T15:47:42.540-08:00So Many Things...<h4>
<b>The Fun Stuff:</b></h4>
Casey is wrapping up her Cookie Sales. She is the top seller in her troop. She kind of has an unfair advantage though- there are a lot of people in her care circle that were all more than happy to buy cookies from Casey. We are down to our last 5 boxes! When she is all done she will have sold 230. That's pretty impressive. There are some kids that have goals of 1000+. That is way more than I think we could handle. Casey had fun selling, but I am pretty glad we are wrapping things up.<br />
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Casey has been practicing for her upcoming recital. She got her recital dress yesterday. It looks like a <a href="http://en.wikipedia.org/wiki/Cinderella_%281950_film%29">Cinderella</a> gown. She is going to be so beautiful- as always.<br />
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Casey has been working hard getting ready for Valentine's Day. She made a fancy box with her teacher and has been making crafts for Daddy and me as well as little Valentines for her friends in dance & Girl Scouts. She loves any excuse to do arts and crafts.<br />
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It has been pretty warm over the past few weeks. She has been in the pool twice and out on her swing every chance she gets.<br />
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Since Casey is in 3rd grade now- WOW! She has to take the state test this year. It is of course modified for her, and instead of a timed test one afternoon she will work with her teacher to take it over the next few weeks. It's not really pass/fail but more of a complete that she has to do. Her teacher assures me that Casey knows the content, it is all about finding days when Casey will respond to let her know she knows the content. I have to be nearby to come in and suction Casey as needed (or a nurse does), but there are some funny rules about us not knowing what is on the test. So don't ask, I won't know and even if I did I could not tell you :)<br />
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<b>The Medical Updates:</b> </h4>
It feels like the last 6 months are so are just a blur. Casey has been growing so much and everything keeps changing. As soon as I think I have one thing figured out she throws something else my way. I am never bored though, I can say that without a shadow of doubt. I can say for certain that I learn something new everyday too.<br />
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I mentioned in the last post that Casey's ENT was a little concerned with her cholesteotoma being more active than it has been in years past. He wanted us to bring her in if we saw any drainage or signs of infection at all. Of course, he takes the following week off and Casey gets a nasty infection. We saw one of his partners and got Casey all cleaned out and back on her medicated ear drops. The doctor that we saw suggested/ordered a <a href="http://www.mayoclinic.org/tests-procedures/ct-scan/basics/definition/prc-20014610">CT scan</a> of Casey's head. A CT scan generally is not a huge deal. However, for Casey it is. She can not be positioned in a way that radiologist need her for this type of imaging. Trying to move her around getting her as close to this position as possible gets her really upset. The more upset, the more secretions, the more suction, and the higher risk for aspiration (that often leads to additional respiratory issues). We have to stay with her at all times to manage her airway as it is very complex and not something that radiologists are generally prepared for. The next option they offer is to bring in anesthesia and sedate Casey for these types of treatments. That usually goes even worse- the details on all the ways that goes bad are way too much to type up for this post. So even though in theory a CT scan is minor- for Casey it is still a huge deal.<br />
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We had to get labs drawn for her GI bleed recently. We had to go the 3 labs on 2 different days. 8 needle sticks total- 5 on the final day. There were 4 different techs that attempted to <a href="http://www.medicinenet.com/script/main/art.asp?articlekey=39462">draw blood</a>. Due to Casey's physical changes the more she grows the harder and harder getting access to her veins has become. We lost the ability to get <a href="http://www.rch.org.au/rchcpg/hospital_clinical_guideline_index/Peripheral_Intravenous_IV_Device_Management/">peripheral IV</a>s placed over a year ago. Now any IV needs to be placed using an ultra sound (by the PICC team in the hospital). It is looking like her blood draws are going in that direction now too.<br />
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We are still dealing with lots of respiratory issues over the past few months as well. She's good one day then awful the next. We are needing a lot more oxygen and respiratory aids than before. Her left lung had a <a href="http://www.mayoclinic.org/diseases-conditions/atelectasis/basics/definition/con-20034847">partial collapse</a> around the new year. We saw pulmonary yesterday and the collapse is either still there or back.<br />
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It's really hard to know with Casey what issues can be addressed, treated and/or fixed and what issues are part of our new normal. We saw her palliative doctor last week and brought all of this (and more) to his attention. We don't have a date yet, but sometime in the near future we will get palliative, pulmonary, ENT, GI, neuro and Casey's pediatrician together for what is called a care conference. Tim and/or I will also be there and we will take a team approach on "what's next?". I wish it were easier. When we try to work on one thing something else usually gets worse. No matter what she has going on, each little thing triggers break through seizures (heck- even bad weather can trigger seizures). She is showing more signs of puberty now too- which is just one more complication to factor. <br />
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We have known since very early on with Casey that some areas will improve. She will have more and more personality, her cognition and social interactions all improve every day. However, the big system issues (lungs, digestive, neuro, muscle/skeleton, etc) will continue to get worse. Some years they only degrade a little, but some years she takes bigger hits and the changes are hard on everyone- especially her. I hope that we can come up with some non-invasive ways to help her at the care conference. I worry though that there are not a lot of options and that some of these "issues" are not actually issues, but just more Caseyisms.<br />
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We hope everyone is doing well. Thanks for everyone's continued well wishes, prayers and support. We can't say thanks enough for the amazing support system we have. We are very fortunate. Since we do not have a date for the care conference, I am not sure when/if we will have a lot to update on her medical issues in the near future. We will have pictures and updates for the upcoming recital, Valentine's GS meeting, and more fun stuff to post soon.Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-78356662274666051462015-01-27T09:46:00.001-08:002015-01-27T09:46:35.655-08:00Caseyisms, Cookies and More...Casey's lung seems to have opened back up after a round of antibiotics and some time on bipap. She is still doing some crazy stuff and needing oxygen more than before, but we are not sure if it is really a sick thing or just her getting bigger and her body needing time to catch up. <br />
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We deal with the GI blood every few days, and it has oddly become a new normal routine for us. Last week she had a little more and fresher than usual so we are going to get some labs and make sure that while her body was fighting the lung issues it did not fall behind in replenishing her blood cells. We see her pulmonary doctor this week as well to talk about her lungs and breathing overall. I'm not expecting many changes, but I will feel better if I can confirm we are doing all we can. Casey has some ear issues that we are watching closely right now as well. She has had a <a href="http://www.entnet.org/content/cholesteatoma">cholesteatoma</a> for years now and it has been pretty stable. Her most recent ENT appointment was the first time the doctor seemed a little concerned with the activity he saw. We go back in a few weeks to get it checked again. Hopefully it was just a fluke, but as she is growing so much things just keep changing. Her head shape has changed some too. One of our friends was over and we had her feel it since she is a doctor. She said she sees it a lot in the older patients she treats that have brain injuries. We will keep an eye on it for a while too. It doesn't seem to be causing any issues, it's just a weird change in her head shape. We refer to odd things like that as Caseyisms. I told her doctors we need to find a way to get that added to the medical books as an official diagnosis. <br />
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Casey's girl scout troop (or Daisy troop to be exact) started selling cookies on 1/21. Casey sold some to her family, nurses, therapists, etc and she is going to try to get up to her doctors offices this week to sell to all of them. Her doctors and their staff are all pretty excited that Casey is a girl scout. I'm sure she will be able to sell quite a few boxes.<br />
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I am the cookie mom for our troop so that has been keeping me extra busy. It's not bad though, and it's totally worth it since this is something that makes Casey happy.<br />
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At dance last week it was a beautiful day and the girls were all being so silly. Casey and Jenny were chatty as ever, and I think the warm weather just made everyone in a great mood. Casey got some wild unicorn pants for Christmas that she wore that day. We are calling them her fancy pants. We are not sure if it was the fancy pants or the weather, but she had a blast at dance last week. <br />
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One of Casey's friends from dance had a birthday a couple of weeks ago. Casey went with the birthday girl and her sister to see <a href="http://www.imdb.com/title/tt1823664/">Annie</a>. I have to admit, it was pretty cute. The original is much better, but the new one wasn't bad. I had not planned on seeing it at all, but the birthday girl picked the movie. Casey started out great, but had a little melt down in the middle. We had to take her out to the lobby to calm her down, then instead of staying in her wheelchair she finished the movie on my lap. She loves hanging out with her friends, and once she calmed back down it was a nice afternoon out of the house.<br />
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We hosted our monthly game night on Friday. Casey slept all day then around 4 she woke up and was ready to play. She yelled at us for a little bit because she thought she would wake up to a house full of her friends. When she realized she still had to wait an hour she wasn't happy. All of her friends finally came over and she played so hard that she wore herself out before 8pm. She doesn't have a lot of energy lately, but she tries so hard. <br />
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Casey had a play-date on Sunday with a little girl that lives next door. Her friend painted Casey's fingernails and they made bracelets and had a tea party. It was great fun. <br />
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Casey is getting ready for her dance recital and selling as many cookies as she can. She has a birthday party this weekend that should be lots of fun too. It's about as girly as they come- right up Casey's alley. They are all going to a kids salon to get hair and nails done. I am sure we will get some good pictures to post soon. Until then, we hope everyone is doing well. If you need to order cookies, let us know :)<br />
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<br />Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-31815832378063126572015-01-06T16:51:00.001-08:002015-01-06T16:51:28.635-08:00Happy New YearWe did not finish 2014 quite as strong as we had hoped. Shortly before Christmas Casey seemed to be coming down with a little cold. She was having a lot of heart rate issues, breathing issues, thick sticky secretions and needed oxygen and pain medicine quite a bit. On Christmas day she seemed to be feeling a lot better so we hoped that what ever it was had passed. Sadly by the next morning she was not looking very good anymore. <br />
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Holidays are usually pretty lightly staffed around here. Most of our nurses have their own families and traditions so they take off for the big holidays. It's hard when we don't have much help, but we totally understand. If the tables were turned I would take off the holiday to be with my family too. When Casey is sick and we are short handed it can be a little stressful- especially when we add holidays to the mix. We managed to get through Christmas week okay, tired, but okay.<br />
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Casey had a pretty good day the Sunday after Christmas. Some friends came by and she was excited to play with her new toys and her friend. Again, we hoped that was a sign that she was over what ever this was and that we were moving in the right direction. Wrong again! Monday morning she was back to being miserable. She never ran a fever during any of this time, she just looked miserable.<br />
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On that Tuesday when she was still a mess we decided it was time to get her doctor on the phone. We took her in for an xray on that Wednesday expecting that she had a pneumonia. Her secretions were really bad so it made sense that she could have aspirated and gotten a little in her lungs that developed into a pneumonia. The xray showed that her lower left lung had <a href="http://www.mayoclinic.org/diseases-conditions/atelectasis/basics/definition/con-20034847">atelectasis</a> (partially collapsed). <br />
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Atelectasis explained the need for pain meds and the breathing issues. We are fairly sure the thick sticky secretions are what triggered everything to start. A few years ago this would have become multiple weeks (or more) in the hospital. Luckily we have set up our home to handle stuff like this now. We put Casey on <a href="http://emedicine.medscape.com/article/1417959-overview">bipap </a>to push some pressure into her lungs and help to open them back up. We have to use bipap at least once a year. Casey hates it, but it helps a lot when she needs it. The first round she did great. When she just lets it happen and doesn't fight it we know she needs it. About half way through the second round (the next day) she started yelling and trying to get out of her mask. This is actually a good thing. When she is feeling stronger she is able to fight it and that helps us to know that it has done what we needed it to do. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUYxKzA6LYC0vLIXkUehx4p66iKhMZ28moWS32tSD6pXPLVRsSXcVyvsOBJeoulySJFSxjv29SeAS0H1ZVhzDx9xeDWWRKI-n2CY3vb0dK-VG0WkZ7rqtI2Cd49t7eEx1_-2S0-w/s1600/CaseyXmas-1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUYxKzA6LYC0vLIXkUehx4p66iKhMZ28moWS32tSD6pXPLVRsSXcVyvsOBJeoulySJFSxjv29SeAS0H1ZVhzDx9xeDWWRKI-n2CY3vb0dK-VG0WkZ7rqtI2Cd49t7eEx1_-2S0-w/s1600/CaseyXmas-1.jpg" height="213" width="320" /></a>She is still needing oxygen off and on, but at a much lower setting. Her pain seems to be much better managed now too. She even tried to cooperate when her teacher came in today. She started an antibiotic on Wednesday (New Year's Eve) and we think it is helping. Hopefully by the time she finishes up her 10 days on antibiotic she will be back to her usual spunky self. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYRpTkDWJHAPOA2vmUbnT_qXhumHwnJRqzVoMqltsP3TIBxNitjHpMXSYD90mp-eh6xfLok6OaGnmE8Y9KlpqWyDXDWVhKqNCErZbL10GGjFD67J7lga8Bz7W-9ohtQnnPvg0UaQ/s1600/CaseyXmas-5.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYRpTkDWJHAPOA2vmUbnT_qXhumHwnJRqzVoMqltsP3TIBxNitjHpMXSYD90mp-eh6xfLok6OaGnmE8Y9KlpqWyDXDWVhKqNCErZbL10GGjFD67J7lga8Bz7W-9ohtQnnPvg0UaQ/s1600/CaseyXmas-5.jpg" height="320" width="213" /></a>She got all kinds of new toys, books, nail stuff, art projects, etc. for Christmas and she hasn't been up for playing at all. I'm sure once she is up for it she will have lots of playing to catch up on.<br />
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Shortly before Christmas my grandpa went into the hospital with pneumonia and Flu A. He spent about a week there. It was sad that he wasn't able to join us for Christmas this year. I am glad he is out of the hospital and doing much better now though. We had the house on lock down while he was sick. Everyone that went to see him had to change and disinfect when they got back to our house. With everything else we had going on, we were not about to add the flu to Casey's list of issues. <br />
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Girl Scout cookies are on sale 1/21. Hopefully Casey is ready to go by then- she has lots of sales to make. We hope everyone had a great Christmas and a Happy New Year. Here is to 2015 being filled with good ealth, love and happiness. Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-17769997892085321482014-12-20T15:32:00.000-08:002014-12-20T15:32:02.461-08:00SANTA!!!Casey has had a pretty fun weekend so far; definitely a great start to her Christmas break. Last night we went over to some friends for our monthly game night. The kids drew names for Christmas presents and it was early enough in the day that we decided to take Casey with us. Usually she stays home with her nurse, but she was so excited to go to her friends' house for a Christmas party. She was having a great time just being around her friends. Then, to make it even better, she got a present full of 'My Little Pony' stuff. By the time she got home and to bed to she was wiped out. <br />
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This morning Santa came through the neighborhood on the back of a firetruck. We expected him around 10 this morning. After Casey's morning medicine and routine we got dressed and then headed to the garage. She invited a few friends from the neighborhood to come over and wait for Santa with her, and while we were outside a few other neighbors along the street came and joined us as well. Santa's 10AM arrival ended up closer to 1PM, but we all had a great time waiting. We made some cocoa (it was a little chilly here today) and the kids all had a great time playing together. We ended up ordering pizza for lunch too since everyone was getting hungry. We can not say enough how happy we are to have moved to this neighborhood. Days like today when we get to spend time with our wonderful neighbors just remind us how much we love it here. Casey especially, she is just one of the girls here with her friends. <br />
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Here are a few pictures from today. Casey had so much fun. I love that the fire department does this for the kids.<br />
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<br />Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-19199275794471695092014-12-15T16:31:00.001-08:002014-12-15T16:36:27.261-08:00Holiday FunLast weekend Casey had a really fun day. She was working on her gingerbread house that she was really excited to do when some friends from the neighborhood stopped by. She loves to hang out with all her girl friends. They helped her decorate the house. Casey had a great time.<br />
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Later some other friends came by. While they were here they all made ornaments with letters to Santa. The ornaments came out really cute. After crafting they all sang along with Casey's karaoke machine. They put on quite the show.</div>
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This weekend Casey had a lot of fun too. I was busy with a <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><a href="http://mommiesofmiracles.com/2014-angel-tree/">special project</a> with Mommies of Miracles. While I was gone she and Daddy had a great time. They played guitar, snuggled, watched movies and pretty much did everything Casey wanted to do.</span></div>
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<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">This coming weekend she has some fun stuff planned. Hopefully she has a good week and maybe we can finally get that family Christmas picture.</span></div>
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Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-10686557529532689492014-12-14T20:25:00.001-08:002014-12-14T20:25:25.643-08:00Latest UpdatesChristmas is right around the corner and I feel like Halloween was just yesterday. I used to be so on the ball with everything, ahead of schedule, I never missed a beat. Lately I feel like I run and run all day long and never catch up. Oh well, me and 99% of the country I think feel that way.<br />
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Thanksgiving was nice. Tim's mom and brother came in for a few days. It had been a while since we saw them last so it was nice to catch up. The last time they saw Casey was shortly after her last surgery. At that time she was a puny 28 pounds. I am pretty sure she has passed or is really close to the 50 pound mark now. She has grown a LOT since Grandma Barnes last saw her. <br />
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Casey is still having a lot of tummy issues, and we still deal with bad days, or bad mornings, so we just laid low over the holiday. The pool was still being repaired, but Casey did get to swing some. Her grandma got us a nice heater for the patio as a house warming gift so that Casey can swing all year now. We have used it quite a bit.<br />
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On Thanksgiving some of my family came in for the day to join us for dinner. Everything was delicious. I LOVE Thanksgiving food. Casey did great on Thanksgiving. She was having a pretty good day and was able to sit in her wheelchair at the table with the rest of us. It's not often we can pull that off, so it was really nice to have her at the table. She even chatted a little off and on.<br />
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Tim finished the table just in time to use it for Thanksgiving dinner. It came out BEAUTIFUL!!!! He really does have a gift. I am pretty lucky to have such a talented husband. He entered the table in a contest for wood working. Be sure to check it out, and vote for him. You do have to register for the site to vote, but it's free and easy and they don't spam members. He loaded some great pictures of the table as well. <br />
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You can find his contest entry here:<br />
<a href="http://www.instructables.com/id/Trestle-table-with-floating-arched-stretcher/">http://www.instructables.com/id/Trestle-table-with-floating-arched-stretcher/</a><br />
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On Thanksgiving evening I got a text from one of Casey's nurses that we miss dearly. She and her family moved to Houston (her family is there) and we really hated to see them leave. They visit Austin from time to time. They were in town for the holiday and she came over with her kids (you may remember her daughter from previous post- she and Casey were BFFs). After they moved she had a son, so we had not even met the baby yet. Casey was so excited to see her Maritza and Makayla. We all miss them and it was really nice to catch up. A great surprise ending to a nice Thanksgiving.<br />
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The following Friday we decorated the tree. Casey LOVES Christmas lights so we usually get the tree up as soon as we can after Thanksgiving. We set it up so that she could watch and direct us from the catch near the tree by using a mirror in her line of site. It worked really well. There were a few ornaments she had very specific ideas about and let us know if we put them in the wrong spot. <br />
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We tried to get a few family/group pictures around the tree after getting it decorated. Casey was not interested in getting dressed at all. They came out okay, but we still need to get a better family shot (with clothes on) for the holiday. <br />
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Grandma Barnes and Uncle Larry went back to Indiana the Saturday after Thanksgiving. Grandma Barnes has been having some health issues of her own, and was actually in the hospital shortly before coming out, and ended up back in the hospital soon after getting back home. Hopefully she is getting some rest now and recuperating well. <br />
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Soon after wrapping up Thanksgiving celebrations I got a really nasty bug and was down for a few days. Just as I was able to get out of bed Casey's nurses ended up getting sick as well. It was a long week. Usually the week after Thanksgiving I get a huge leap on shopping, decorating, baking, cards, etc. I accomplished NOTHING that week. I was pretty happy to be feeling back to my usual self after a full week and did my best to make up some time last week. I had to give up on a few things. I don't think we are sending cards out this Christmas. Poor Tim has had to eat a lot of take out and left overs recently too. I feel like after this weekend I am okay on time again. I should be able to get back to my normal schedule (at least for a few days). <br />
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We have a few labs and follow up appointments coming up with Casey's tummy issues. We really hope to at least have a good plan if not a resolution by 2015. We'll let you all know as we get more specific details to share.<br />
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We hope that you all had a wonderful Thanksgiving. We should be able to get another tummy update posted before Christmas. Hopefully that one will have some direction and answers. <br />
Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-33960872717793794432014-11-25T14:29:00.002-08:002014-11-25T14:29:16.985-08:00Happy Thanksgiving<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLltPxDWCX6rbhzb5Xld7MS7WZu48g3g4B_tnp-hbfzDnGjX44a_V_GAs2yoq9erk8TtzCSPH7K43qVhJmTr03cpjmkDRn-6JohBphPSzlGwgckCuxzqrhPvPSUrNtegvbDF5ijA/s1600/1385568608488Simpson-Thanksgiving-Dinner.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLltPxDWCX6rbhzb5Xld7MS7WZu48g3g4B_tnp-hbfzDnGjX44a_V_GAs2yoq9erk8TtzCSPH7K43qVhJmTr03cpjmkDRn-6JohBphPSzlGwgckCuxzqrhPvPSUrNtegvbDF5ijA/s1600/1385568608488Simpson-Thanksgiving-Dinner.gif" height="240" width="320" /></a>I don't know where 2014 has gone, but Thanksgiving is just a day and
half away. I love turkey! There is a commercial for a sandwich meat
talking about how if you do this or that "you may be a turkitarian..." I
am pretty sure I am a turkitarian. I think the only one I have ever
seen love turkey as much as I do is the dad from "Christmas Story" and
the <a href="https://www.youtube.com/watch?v=9cFHAJ5asMk">Bumpuses'
dogs</a>. Usually we do Christmas as our house and my sister
hosts Thanksgiving. This year Tim's mom and brother are coming to town
for Thanksgiving so we decided to do Thanksgiving here instead. Tim has
been working a lot on weekends and evenings to get the dining room
table done. He had a neighbor help bring it in today. It came out sooo
pretty! It is going to be perfect for hosting a family Thanksgiving.<br />
<br />
We
pick up Tim's mom tomorrow and then my sisters, their families, and my
grandpa will join us on Thursday. My mom and John are out to sea this
year, and my brother and his gang have other plans. It will still be a
nice gathering of family. Casey is excited to play with her cousin
Riley. <br />
<br />
Casey is still having a lot of tummy issues
and can't seem to get over cdiff. We saw the doctor again yesterday and
he ordered some follow up labs. We see another doctor in about a week
to talk about the next step. Until we talk with her, we don't really
have enough information to share. Hopefully we will have a new plan and
some answers soon. Listening to her tummy rumble and cleaning up these
awful diapers is no fun at all- for any of us. <br />
<br />
Casey
is loving Girl Scouts (or Daisies). She is going to be selling cooking
mid-January. Be sure to let us know if you want to buy some so we can
request enough in our supply. January will be here before you know it.
Christmas is only a month away!!!! I need to get moving on shopping. <br />
<br />
It
seems that last week everything that could break, did break. The pool
cracked, the last Medela (the good suction machine) broke, the sensors
on our van tires have gone crazy, and I think there were a few other
small things too. Luckily the pool guy came right out and they are
working to get it fixed ASAP. We got another type of suction machine.
It's not as light or easy to carry around, but it works and this one is
covered by insurance (and available in the US without paying import
taxes). So yes, things broke, but it wasn't the end of the world. We
still have a lot to be thankful for this Thanksgiving. We are focusing
on the good stuff, and there is lots of it. <br />
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<br />
We
hope that everyone has a safe and happy Thanksgiving. We will post
more after the doctor appointment with details on what's next in the
battle against cdiff (I'm not sure if it's still a battle or if we can
call is a war now?). Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-4951437936253708702014-10-31T12:56:00.002-07:002014-11-25T14:29:30.474-08:00HalloweenCasey had a GREAT day!!! She woke up bright and early (3AM) and had a rough start. Some tummy issues made us wonder if she was up for her deliveries today. She calmed down and was ready to go right on time. Her mermaid costume was a big hit everywhere she went.<br />
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Casey is up to 16 doctors now. 2 are brand new, and 4 we only see as needed (luckily we haven't needed them recently) so we took goodies to her 10 regulars and her PT up at the hospital- 11 deliveries in all. She was eating up all the compliments everywhere we went. All of the doctors, nurses, staff, other patients, everyone told her how great she looked and she was loving the attention. While I was talking to one PT Tim was talking to Casey's PT and Casey's nurse was chatting with the photographer. After a few minutes (or seconds) of Casey not being the center of attention she quickly reminded us that this is her day and we need to pay attention to her. She is such a little stinker.<br />
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When we took her to the trunk or treat earlier no one knew she was supposed to be Boo. Everyone knew exactly who she is today. She got lots of stickers, some necklaces and even a little puppet while we were out. She needed a little suctioning in the car, but for the most part she was doing great all day.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLpcb95_tP5aLTK9X8WarJ6CywwL3x8jMt-3o9tV_iCTHLna0IFHYXyOPAsB1ffb4nruvxxvR07_02zPA0bfNEupHTQv09P28vagPW2xvcnwTg-2MnHmznDu-dyKkkZv9eeZWWnA/s1600/2014-10-31+10.00.15.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLpcb95_tP5aLTK9X8WarJ6CywwL3x8jMt-3o9tV_iCTHLna0IFHYXyOPAsB1ffb4nruvxxvR07_02zPA0bfNEupHTQv09P28vagPW2xvcnwTg-2MnHmznDu-dyKkkZv9eeZWWnA/s1600/2014-10-31+10.00.15.jpg" height="180" width="320" /></a>Tim is off this week and so he was able to join us this year. I am not sure if this is our 4th or 5th year doing this, but he is usually working and just hears about it after we get home. He was pretty excited to be able to go with us. He saw how much she loves doing this first hand. I think he may try to take off when we go next year too. <br />
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After a long day Casey needs to get some rest. We will see if she is up for going trick-or-treating or to the block party a little later this evening. She has been all about hanging with her friends lately. I am sure if she is able, she will want to be there. If she needs to rest more she can help hand out goodies here instead. Either way I am sure she will have fun tonight.<br />
<br />
I had a little free time and thought I would go ahead and update on her deliveries. I will do another post this weekend on tonight's fun activities. <br />
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The recipe we made this year is <a href="http://parentpretty.com/pumpkin-crunch-cake/#_a5y_p=2339920">Pumpkin Crunch Cake</a>. Someone made this at my grandparents church a little while back and it was so yummy. Hopefully our attempt was yummy too.<br />
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<br />Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-40600750895807331782014-10-30T12:00:00.000-07:002014-10-30T15:03:20.628-07:00Born to be a StarWe have always joked that Casey has been a diva since she arrived. She has a way of getting everyone's attention and making everyone fall in love with her. She has even upstaged some big celebs.<br />
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The hospital where Casey was born was known through out the Los Angeles area as one of the celebrity birthing hospitals. The Labor & Delivery unit was top notch and many of the pictures you see in the tabloids of celebs taking home their babies are taken in front of this hospital. Casey was born on a Sunday and the previous Tuesday the hospital was crawling with paparazzi. This was the hospital that delivered <a href="http://www.tmz.com/2006/07/11/exclusive-cruise-shields-births-new-twist/" target="_blank">Suri Cruise and Brooke Shield's daughter, Grier</a>. All of the hospital staff was a buzz. Did you get to see Suri Cruise? Where you on the floor when Katie and Brooke delivered? When you would get on the elevators all conversations were about the recent celeb babies. That was until Sunday night.<br />
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Casey's birth was unlike any that most people have or ever will witness. The fact that she and I both survived was nothing short of amazing. The hospital was no longer talking about baby Suri, but now all of the chatter was about "that scary birth", and can you believe they are still alive. I still remember the first time I got on an elevator to go visit Casey in the NICU after I had been discharged. I was wearing normal clothes so no one knew I was "that mom". Tim and I boarded the elevator and listened to nurses talk about us! It was kind of surreal. No one said our names, and no one broke any privacy laws, but we knew exactly who they were talking about. The entire hospital was talking about Casey. She upstaged Suri and her role as the diva was only beginning.<br />
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At 6 months old Casey went in to get <a href="http://www.cerebralpalsysource.com/About_CP/botox_cp/index.html">Botox injections</a>. This is common treatment for kids with Cerebral Palsy that have stiff muscles. But, Casey took it up a notch. Casey received her Botox injections in Beverly Hills- of course. <br />
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Since Casey can not close her eyes and she doesn't blink, we are always trying to protect her eyes. Usually we do this with sunglasses. They serve a real health purpose, but they add to her diva status.<br />
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Now Casey has added her own paparazzi. For the next 6-8 months a photojournalist, <a href="http://www.ilanapl.com/">Ilana Panich-Linsman</a>, will be following Casey around. She is doing a project to show how much <a href="http://getpalliativecare.org/whatis/">Palliative Care</a> has changed over the years. She will be following 3 local families around. She will get some pictures of Casey doing all kinds of things (good and bad). Hopefully with a long range of time like this she will be able to show an accurate illustration of Casey's life. We think this is a great story that needs to be told and we are pretty excited to be part of this project. We are also pretty excited to have some great pictures of Casey when it is all done. She even offered to do some family pics. We are excited to see how this story comes out. A lot of Ilana's stories (you can see in the "In Print" section on her link) are seen in some big publications like New York Times, Wall Street Journal, etc. Maybe Casey can finally get her record deal out of her new found fame :) Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-16549806251239357132014-10-29T14:15:00.002-07:002014-10-29T14:15:27.229-07:00Halloween PartyWe LOVE Halloween and decided that this year we wanted to throw a little party. The party was so much fun. Casey had a blast. Everyone wore costumes, and I have to say I was really impressed with how great all of our friends costumes were. We had trophies for the best group, kid and adult costumes and everyone voted. It was close since there were so many good ones. Our winners were Princess Zelda for the kid category, Morticia Addams for the adult category, and the group went to a family that all dressed as characters from Alice in Wonderland. We had pirates, vampires, pigs, mermaids and all kinds of great costumes at the party. <br />
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We hired a babysitter to help keep the kids safe and entertained (and to keep the house safe too). That was a FANTASTIC idea! The kids had so much fun playing with her and the adults were able to enjoy themselves as well. We will definitely have another party next year, and we are already looking forward to it.<br />
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Casey had a great weekend. She was able to tolerate being in her costume and in her chair for most of the party. She was so happy sitting on the patio and hanging out with her friends. When we took her to bed I pulled her out of her chair and laid her down. I noticed that at some point someone put a fake eyeball in her hand. She was so proud and held on to it until she was all tucked in. She now has a fake eyeball next to her bed :) It doesn't match the fairy decor, but it makes her happy so it can stay.<br />
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She is looking forward to visiting all of her doctors on Friday to pass out treats and tell them thank you for another year of all of their hard work. Last year after making the rounds she was wiped out. If she is up for it this year there is a block party in our neighborhood and some of our neighbors invited her to trick-or-treat with them. Hopefully she is up for some stuff, but we just never know until the moment comes. <br />
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Here are some party pictures, and we will post more after Friday's activities.<br />
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<br />Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-81500735124750489492014-10-19T08:15:00.000-07:002014-10-19T08:15:10.328-07:00Quick Health Update and Some Fun Stuff...Casey has been to a handful of doctor appointments since our last post. Infectious disease has her on a 6 week course of antibiotics to hopefully finally clear out the cdiff. Casey's neuro changed her medications a little to hopefully get her seizures more controlled. Casey's GI is helping to keep Casey comfortable with tummy aches while we get her over cdiff. We took Casey to get fitted for a new orthotic. This one will be designed to hold her arms in a position that will open her chest up a little. It won't correct her barrel chest, but the hope is that it will keep it from getting worse and help keep her lungs from being impacted. They are having to do the entire thing custom (as is everything for Casey) so it will take a little while to get it done. It may take a few tries to get it right, but hopefully once we do it will help her a lot.<br />
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Now to the fun stuff....<br />
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Casey did not make it to her first Girl Scout meeting, but she did make it to this weeks meeting. She was so excited to wear her uniform and go play with her friends. Her troop has 7 girls, including her. She knew 4 of them and she was happy to make 2 new friends. They did crafts, read a story, worked on a group/teamwork project and had lots of fun. She is looking forward to going back very soon.<br />
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She made it back to her dance class too. She loves to dance and was very chatty telling her friends how much she missed them while she was out sick. <br />
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We have tried out the heater on the pool. It works pretty well. Hopefully she can get in some more pool time before it gets too cold. She has been getting some swing time too. She loves when Daddy grills- while he is on the patio cooking dinner she gets to hang out on the swing :) I love when Daddy grills too!<br /><br />This weekend we had my sisters, Cappy & Grandpa John, and GP over to celebrate October birthdays. Casey had a good time visiting with family. She told them all about her Halloween plans and showed them the ghost she made in Girl Scouts. <br />
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After the birthday celebration Casey went to a Trunk or Treat. A local hospital hosts one each year for kids with special needs. We missed it last year, but Casey had fun this year. About half of the trunks (sponsors) had non-food treats as well as candy. Hopefully each year more and more people add non-food treats to their goodies. One booth had the Mommies of Miracles decal up spreading the word about our <a href="http://mommiesofmiracles.com/halloween" target="_blank">Trick-or-Treat Program</a>. That was pretty great to see. Casey has 2 costumes this year. She wore her <a href="https://www.youtube.com/watch?v=m-2URdvrmTQ" target="_blank">Boo</a> costume to the trunk-or-treat. She was pretty cute Boo.<br />
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If you have not already, be sure to pick up some non-food treats and print out your decal and/or register your address to let kids know you are participating in this year's Trick-or-Treat Program. As extra incentive this year, every registered address is entered for a chance to win one of three $50 Walmart Gift Card. Anyone that shares pictures of the decal on their home and/or pictures of their kid wearing the badge will be entered for a chance as well. <a href="http://mommiesofmiracles.com/wp-content/uploads/MOMTrickorTreat.pdf" target="_blank">Full details on how to enter- click here</a>. Casey (and Tim & I) had our picture in the paper yesterday with a story about the Trick-or-Treat Program. <br />
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Casey has a few routine appointments coming up and lots of fun stuff planned for Halloween. We'll post again soon with more updates. Until then, we hope everyone is doing well.Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-13959121908933970242014-09-29T04:22:00.003-07:002014-09-29T04:51:46.546-07:00Swinging Girl ScoutAfter our last post Casey was starting to get a little better, but then seemed to take a few steps back. It took us a long time to get her off of oxygen and to a point where her lungs started to sound better. Sadly she had to miss a lot of school, dance, and pretty much everything over the past 3 weeks. As of last week the pneumonia seems to be much better. We are still dealing with cdiff and some terribly tummy stuff, but her lungs do sound much better (FINALLY).<br />
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The cdiff has been on and off since late June. We have heard stories of people going years to get rid of it. We can't really sit and wait on this. With Casey always just barely hydrated, each recurrence of cdiff takes more and more fluids that she just can't spare. This last run of cdiff caused her a lot of pain as well. After talking with Casey's pediatrician and palliative doctor we are going to take Casey to see <a href="http://www.acponline.org/patients_families/about_internal_medicine/subspecialties/infectious_disease/" target="_blank">Infectious Disease</a> this week. Hopefully they can help us come up with a way to be rid of cdiff for good this time.<br />
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We are going to try to get back onto a normal schedule this week. Casey has school, and dance. She has barley done any school so far this year (I think only 2 days). I guess this is just one of the many reasons we opted for <a href="http://www.brainline.org/content/2008/10/guidelines-providing-homebound-instruction-students-disabilities_pageall.html" target="_blank">homebound </a>school for her.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLKqgcHeBXAMORGatZmfgZzomFF3vvxodZH0GdtEp5-fFBguXo57fUl8OrsfyjmBYpXtk7wUKmlDsVDyzXou965Jm0BoUAYsA0Qa8_7RQk9Zo3NZgnZ-RIPOQkKXlrW2zVb_Tb3Q/s1600/swing.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLKqgcHeBXAMORGatZmfgZzomFF3vvxodZH0GdtEp5-fFBguXo57fUl8OrsfyjmBYpXtk7wUKmlDsVDyzXou965Jm0BoUAYsA0Qa8_7RQk9Zo3NZgnZ-RIPOQkKXlrW2zVb_Tb3Q/s1600/swing.jpg" height="179" width="320" /></a>Casey loves to swing. When we go to the park that is always what she wants to do, she loves to swing at the PT gym at the hospital, really an chance she gets she loves to swing. We have been wanting to get her her very own swing for some time now. Our old house didn't have a place where we could hang one, but one of the things we looked for in our current house was a place for a swing. She uses what is called a <a href="http://southpawenterprises.com/Vestibular/PlatformSwing.asp" target="_blank">platform swing</a>. It basically lets her lay down while swinging. There are a lot of therapeutic benefits to swinging as well enjoyment. Casey's Ortho, his nurse and Casey's PT have been trying to help us get a swing for Casey all year. It finally came in and Tim was able to get it installed. I think it's safe to say she likes it. Between the swing and the pool Casey is becoming quite the outdoorsy kid :)<br />
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Some friends of ours have done something really special for Casey. Their little girls are some of Casey's friends and are all doing girl scouts this year. They knew that I was not interested in signing Casey up if she was going to get stuck in a group of girls she may/may not know. Instead our friends decided to go through all of the training, background checks, etc in order to start their own group. This way Casey will be with girls that she already knows. This is HUGE!!!! Knowing that the girls are all good around Casey, knowing the environment is one Casey does well in, and it only being a few times a month makes <a href="https://www.girlscouts.org/" target="_blank">Girl Scouts</a> something Casey CAN do. Our friends doing this so that Casey can participate means so much to us. Casey is very excited! This week will be their first troop meeting. I am not sure if her troop will be selling cookies or not, but if so, she will be hitting you all up soon :) <br />
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I will post soon with more details on the ID appointment, how Casey likes Girl Scouts, and more. Until then we hope everyone is doing well.Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-23338797367274619562014-09-14T03:00:00.001-07:002014-09-14T12:23:30.784-07:00Can't Catch a BreakThis poor kid has had one thing after another for what feels like all of 2014! As soon as we get her over one thing something else comes along. She is overdue for some time off and fun stuff. <br>
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She had a good week recently and was able to start back up with dance, met and liked her new teacher, and played some with friends and her nurses. We thought things were looking up. Out of no where this week things took a turn.<br>
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On Monday Casey had a lot more secretions than normal. Some days are really bad, and there is not much we can do about that. In 4 hours she had more than a typical 24 hour period. When we took her to bed that night her heart rate was up pretty high. When she gets dehydrated (which happens easily) her heart rate going up is one of the first signs. We figured with as much as she had out, dehydration made sense. We had her nurse giver her extra fluids that night and did not worry to much about it. <br>
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Over night Monday Casey's heart rate came down some, but not as much as we expected. When she woke up Tuesday it started going back up pretty quick. She also started running a fever. After Tylenol Casey was still running a fever and her heart rate was still on the rise. Something was up. When we talked to her pediatrician they ordered blood work, x-rays, urine, all that fun stuff. We got Casey dressed and headed to the lab. Before we could even get out of the garage Casey started getting MUCH worse- and fast! Her fever was climbing, along with her heart rate and now she was shaking and not breathing well either. We decided instead of doing out patient labs that we needed to head to the hospital.<br>
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Luckily Casey has VIP status and we were able to call on the way to have them ready for us. They quickly got blood work and x-rays going as well as an IV placed to start pushing some fluids. It took a little while, but Casey did finally start to settle down some. Her breathing was better, but her heart rate and temp were still up. A normal heart rate for her when she is awake is in the 130's. Her usual temp is 98.5. When we got to the hospital she was in the 220's heart rate with a 102.9 fever (which explained the shaking and breathing trouble). After a few hours and some fluids she was back in the 160's heart rate and 99 temp. The blood work showed infection and the x-rays showed a pneumonia in her upper left lung. <br>
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Casey has chronic aspirations, and we deal with an aspiration pneumonia at least once every 12-18 months. We have gotten really good at catching them early, treating at home, and minimal impact to Casey's routines. All of the normal signs that we see did not show up with this one. This one caught us off guard and hit Casey hard. <br>
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We got admitted and they started some IV antibiotics right away. Shortly after getting to the room Casey had a HUGE BM. Maybe 10 minutes after getting her cleaned up and changing all the bedding she had another. On the 3rd one in an hour she started getting back into the higher temp, shaking, high heart rate, and now she also looked puffy and modeled. All of the doctors and nurses came in to try and help us calm her back down. It took a little while, but she did eventually start to settle again. We were not sure if the fluids, antibiotics, or BM triggered the freak out, but it was kind of scary. When some people have a hard time with a BM it can trigger the <a href="http://www.healthline.com/human-body-maps/vagus-nerve" target="_blank">vagal nerve</a>. Being that this ties directly back to the brain it makes the body do all kinds of crazy stuff. It's possible that is what we saw.<br>
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Around 11 that night Casey had another freak out, without the BM, and luckily she recovered from that one a little quicker. Around 2AM Wednesday morning things started looking better. Casey's heart rate came down into the 140's, her breathing was MUCH better, the temp was final back to 98. By 6AM her heart rate was in the 120's (her sleeping heart rate is usually 80-100). She still needed oxygen to help her breath, but her breathing was not as labored, much slower, and she could breath without the oxygen- just not as well as she usually could.<br>
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When the doctors came in to round they were very pleased with how much Casey had improved. They let us go home later that day. We ended up there about 24 hours. By the time we figured out what was going on we were pretty much on our way home (that is why no one got a phone call- it wasn't personal). <br>
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Our main day nurse in on vacation this week. We got home later on Wednesday so we did not have a day nurse that day (luckily we did have the night covered). The nurse that was going to pick up Thursday got sick so we did not have that day covered either. And we don't usually have a nurse on Fridays at all. We did have Thursday and Friday night, so that does help. I am up with Casey tonight though. Hopefully it will just be a couple more Saturday nights for me and then we will have our nights covered again. After being up with Casey in the hospital Tuesday night, then not having much help during the days this week, and now being up again tonight, I AM WIPED OUT! <br>
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Casey had a rough morning Thursday, but since then she has been slowly improving some each day. She is still on oxygen and needed her bipap on Thursday. She spent some time off of oxygen yesterday and we will see if she can go a little more today. We want to be sure she recovers so we are not rushing her. After we got home from the hospital they called to tell us that Cdiff is back again :( This round is not as bad as previous rounds. My mom restocked my candle supply too, so we are all set. We have Casey on an antibiotic for the pneumonia, but we are holding off starting a second one for Cdiff. Hopefully she can get by without needing it this time around.<br>
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Some of our friends came by to bring us lunch on Thursday. That was a nice treat. One sent us yummy <a href="https://www.cookiedelivery.com/" target="_blank">Tiff's Treats</a> Friday too. Tim and I do love cookies :) <br>
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Casey had so many fun things planned this weekend. I always hate when she is sick, but it breaks my heart when she has stuff she is looking forward to that I have to cancel. One of her friends had a birthday party Saturday that she had to miss. Sunday (today) there is an organization here in town (<a href="http://www.urourhope.org/" target="_blank">UR Our Hope</a>) that does an annual fundraiser. This organization does a lot for families like ours, and they always have the fundraiser at Casey's favorite Chili's. We still have a Chili's menu around here that we will let her look at later, but it's not the same as going out to eat. Hopefully with lots of work and rest we can get her feeling better this week and do something fun next weekend to make up for missing so much.<br>
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I will try to post more later this week on how she is doing. Compared to Tuesday morning, she is already doing MUCH MUCH MUCH better. Each day is better than the one before so I think we are on the right track. And again, we are sorry no one was called. We have not had a chance to do much of anything this week short of cancel appointments and any plans that we had. Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-1654797396417897952014-09-06T01:41:00.003-07:002014-09-06T01:41:50.273-07:00School, Dance, Nurses and More....We knew change was coming, but boy did it come. It feels like we have been running in circles these past few weeks trying to get back on a routine. Hopefully in another week or two we will have things running a lot smoother.<br />
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We have a new night nurse that recently started. This post is being written at 3AM as I am training her this week. It usually takes us a good week before we feel like we can go to bed, and a good month (or 3) before we feel like we can leave the house with a new nurse. I am exhausted from being up all night and then sleeping 3-4 hours to get up and still try to help with Casey's day stuff. I am hopeful that this nurse will stick around a while and maybe I can back to regular sleep soon. <br />
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Casey started school. She missed her first few week. One day the teacher came out and she and I talked some about schedules, goals, etc. but Casey was not up for even meeting her that day. The second attempt that week went even worse so we told her not to even come. This week went a lot better. Casey did 2 out of 3 of her days. She seems to like her new teacher. The teacher is soft spoken, which is a good thing with Casey. She told us she loves arts & crafts and anything involving glitter. I think she and Casey will get along just fine. We had to cancel today because Casey was having seizures and the medicine we give her to stop the seizures pretty much wipes her out for the day. Hopefully next week will go well.<br />
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We are still transitioning from doing out-patient physical therapy at the hospital to doing physical, occupational and speech therapy at home. The PT was supposed to come out today, but we had to cancel her just like school. She will be here Monday instead. The ST came out to meet Casey and seemed really good. The OT called, and I called her back, but I never heard back from her again. I will try to find out what is going on with OT next week. I know it's hard to start a new schedule when school is starting. Everyone is shuffling things around. Hopefully next week we can get things moving with therapies so we can start working on a good schedule for Casey. We are going to work on self soothing goals, and calming techniques. I really hope that with help from therapy we can get more stretching and relaxation tools to help when Casey is having a rough day.<br />
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Casey is getting a therapy swing. We are VERY excited about this. We should get it this week, and as long as Tim can find time to install it, she should be swinging in no time. She loves to swing. Between the swing (that will be going on the patio) and the pool, she is never going to want to come back inside.<br />
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Dance started back up this week. Casey was thrilled to see her friends. About half of the class is back, but not everyone. There were some new kids in class and I am sure Casey will become great friends with them in no time. When we were getting her dressed I asked if she wanted to wear pants and she ignored me (her way of saying no). I offer shorts, again to be ignored. I told her she had to wear something or we could not leave. I offered both again and still got no response. I then offered a tutu and got a very big response. She knew she was going to dance and was just waiting for me to offer the proper attire. She of course looked beautiful<br />
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We had a few routing doctor appointments this week. Casey saw her Ortho on Wednesday. She has been seeing him every six months for years. In addition to all of her dislocations and <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003185.htm" target="_blank">contractures</a> they like to keep an eye on her spine. Casey does technically have <a href="http://www.mayoclinic.org/diseases-conditions/scoliosis/basics/definition/con-20030140" target="_blank">scoliosis</a>, but it is pretty stable so they just watch it at this point. The doctor was pretty happy with how Casey is doing- so happy in fact that we do not have to go back for a full year this time. Of course, we can call if we need to go in sooner. I was worried about her elbows looking worse. He said they are worse, but that they are not causing her pain and there is nothing that can really be done about it. He referred to her elbows (as well as all of her other dislocations) as the Casey conundrum. We corrected him and told him we call them Caseyisms. He liked out term better. Since she is so stiff, she is going to continue to cause dislocations and contractures. Even if he did surgery to fix them, they would likely still go back in time. We have ZERO interest in putting her through any surgery that is not necessary and he agrees that surgery is not a good choice for Casey. He also warned us that as she gets bigger, breaks are going to likely be something we will see more and more. He told us to just call when we suspect a break to avoid the ER. If we can prevent breaks, and all other ortho related issues, we will just follow up again next year.<br />
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Casey had her GI appointment this week as well. She sees GI every 3 months. She still has stomach bleeding issues, so they want to keep an eye on her, run labs, and make sure that it does not become something worse. Kind of like ortho, GI is another area that there is not much we can do. They could do exploratory surgery to "try" and figure out what is going on. They may be able to find something, and that something may be able to be repaired, but the surgery would take a huge toll on Casey and they don't think that anything they would find and possibly repair would be worth the risk of surgery. We agree completely. We don't like the GI bleeding, but we have learned to manage it. The doctor added Iron back into Casey's daily routine. She doesn't need it now, but he wants to be sure that she doesn't get to a point like we saw last November where she dropped quickly and needed to check in to the hospital and get a unit of blood. We hope to avoid doing that this year- especially during cold and flu season. <br />
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Speaking of cold and flu, I should have taken a picture earlier today. Casey is still a big cuddle bug and loves to snuggle with mom and dad. Tim started feeling bad yesterday so I would not let him anywhere near Casey. He was missing his snuggle time (we like our snuggles just as much as Casey) but still feels bad. In order to get some snuggles he had on a face mask and had to scrub in before taking Casey. It was a Kodak moment and I missed it. <br />
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Casey is still having a fair number of bad days. We are doing our best to try and get her seizures back under control and more good days for the princess. I really hope that the new therapies will help. We have changed/increased some of her seizure medications this week too. Time will tell if the change is helping. <br />
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I'll try to get some pictures of Casey in school and on her new swing in the next week or 2. Until then, we hope everyone is doing well- and for all the kids going back to school- we hope you all have a fantastic year!Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.comtag:blogger.com,1999:blog-19647340.post-45164798350058320172014-08-15T19:40:00.003-07:002014-08-15T19:40:48.156-07:00We Need More CandlesThings were going pretty good for a few weeks. Casey seemed to be over all the crud and back to her sassy self. It was really nice. I was stressing about all of the changes coming our way, but I was loving having my spunky girl back to causing trouble. That was until Monday afternoon.<br />
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Out of nowhere Casey started having all kinds of issues again this week. She wasn't having BMs, then she was having too many, and bad ones. She wasn't having any wet diapers. Her heart rate was through the roof. She had run a low grade fever off and on. Something was going on. We talked with her pediatrician (who is amazing for the record- we love her). She had us take in a stool sample and started some antibiotics again. All signs seemed to point back to cdiff- AGAIN! All of the runny, smelly stools led to Casey being very dehydrated as well (the high heart rate). She wasn't having any wet diapers, and when we would cath to empty anything in her bladder we would get very little and very dark urine out. <br />
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Casey has a hard time taking in a lot of fluids. Since her feeding tube is into her jejunum instead of her stomach it can not go at a fast rate. We were giving her as much as she could tolerate, but we could not seem to catch up. On Wednesday she had been on the antibiotics for 24 hours and she was still not having wet diapers and her heart rate was still up. Her pediatrician ordered some IV fluids to run to help get Casey rehydrated. It took all afternoon and into the evening for the company to get the supplies delivered to our house. Once the supplies were delivered we had to call our nursing company to send out a nurse to place the IV. It was around 9PM when the nurse arrived. She looked around and tried once with no luck. Another nurse came out to see if she could find a good vein. She never found one worth trying. As much as I really wanted Casey to have the fluids, I was glad that they did not treat her like a pin cushion. Since they could not find anything they said they were going to send out another nurse in the morning to try again. If Casey got worse we would take her to the ER. Luckily the antibiotics had started to slow down the stools, so that helped give Casey a chance to start building her fluids back up.<br />
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Thursday morning the other nurse came out and gave it her best. She tried 3 different times. She used to be a NICU nurse and was telling us that the veins on Casey are smaller and harder to thread than the NICU babies she used to work on. We have heard that a few times. Since Casey is so stiff and has so many <a href="http://www.healthline.com/symptom/muscle-contracture" target="_blank">contractures </a>and <a href="http://www.nlm.nih.gov/medlineplus/ency/article/000014.htm" target="_blank">dislocations </a>her veins don't run where or how they should. It seems like every time she needs to get blood drawn or an IV placed it gets harder and harder. In the hospital they usually will call in the PICC team to place the IV using an <a href="http://www.acep.org/Clinical---Practice-Management/Focus-On--Dynamic-Ultrasound-Guided-Peripheral-Intravenous-Line-Placement/" target="_blank">ultrasound</a>. If I knew how to read an ultrasound, and could get one for the house for a decent price I would totally invest in one. I sadly can not read them. They just look like bad reception on a TV to me. Maybe I should look at taking a class in this or something. <br />
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Since we were not able to get an IV at home, it was very likely that we would have to take Casey in to the hospital for at least 24 hours. The good news was that Wednesday night Casey did have some wet diapers. On Thursday morning she wasn't having any, but her heart rate was a little better than it had been. We called Casey's pediatrician with an update on everything. She agreed to give Casey until lunch. She wanted Casey to get her heart rate down and to have a wet diaper and then she would be okay with her staying home. Casey slept all morning and did get her heart rate down even more. She still want not having wet diapers though. When her doctor called at lunch she said she would give Casey until 4PM to have a wet diaper, or we would probably need to take her in. We all did the peepee dance and did everything we could to get her to pee. Nothing helped. We cathed her and got a tiny bit out. Other than not peeing though, Casey was starting to look a lot better. Somehow I was able to convince her doctor to let us keep pushing fluids overnight and see how she does. Luckily, Casey had a really good night. She had 2 good wet diapers, her heart rate was back to its normal range, and she slept great. This was fantastic news to be able to deliver to her doctor this morning. We have avoided the hospital. We have gone through a lot of candles this week though. I think we may have to go restock our candle supply soon. We are getting down to just the holiday candles. That's okay with Tim though, he loves the cinnamon Christmas candles. <br />
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You may be asking the same thing we did- how on earth did she get cdiff again, we just got her over it? Well, I guess she was not fully over it. She did have a negative result on the last test, and they think it was laying dormant for a few weeks. The previous round of antibiotics were on a very low dose for her size. This time the have quadrupled the dose to hopefully knock it out this time. We are not sure what triggered it to come out of the dormant phase. We will probably never know since it really seemed to be out of nowhere. At least we have a handle on things. She is responding to the antibiotics, and her fluids are getting back in sync. Of course this would all happen the week we finally decided to make plans again. The people we made plans with totally understand though, so that helps. As long as you don't get near the diapers she won't get you sick. And, she seems to be perking up some as of today so I think she will be up for a little fun this weekend. I really hope this round of antibiotics really knocks out the cdiff, and that I find a good sale on candles :)Martyhttp://www.blogger.com/profile/09233452097475911393noreply@blogger.com