tag:blogger.com,1999:blog-10515409714007789952024-03-14T00:39:08.142-04:00Emily Marie, Our chILD Child!This is the story of our daughter, Emily Marie. Emily was first diagnosed with interstital lung disease after she suffered respiratory failure with diffuse alveolar damage as a newborn, but she now has lung damage more consistent with another form of interstitial lung disease, bronchiolitis obliterans.Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-1051540971400778995.post-33814785494730086242011-10-01T14:56:00.003-04:002011-10-01T15:16:30.885-04:00Happy Birthday Emily!Emily turned six years old on September 29. I can't believe how fast she is growing up!!! <br /><br />We baked a cake together after her basketball game, and then we opened gifts. She really wanted a big party, but in the end, we decided against it this year. All in all, I think she had a good birthday!<br /><br />Happy Birthday Emily! I am so proud of the wonderful girl you have become!<br /><br /><a href="http://3.bp.blogspot.com/-gsbPYHJ_zr0/TodkhxKGZbI/AAAAAAAAAX4/PUpvRN-aaDk/s1600/100_7102.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://3.bp.blogspot.com/-gsbPYHJ_zr0/TodkhxKGZbI/AAAAAAAAAX4/PUpvRN-aaDk/s320/100_7102.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5658601988108477874" /></a>Emily with her homemade Hello Kitty cake! <br /><br /><a href="http://2.bp.blogspot.com/-CnIHA0mpJdI/TodkiLFkNGI/AAAAAAAAAYA/5snn02nxefI/s1600/100_7107.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/-CnIHA0mpJdI/TodkiLFkNGI/AAAAAAAAAYA/5snn02nxefI/s320/100_7107.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5658601995068781666" /></a>Make a wish! Wonder what she wished for. She's being very tight lipped about it, but judging from the look on her face, I'd say it was something pretty spectacular! <br /><br /><a href="http://2.bp.blogspot.com/-2hMEK8_kWgw/Todki7bprTI/AAAAAAAAAYI/59EE_sEPYZg/s1600/100_7109.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/-2hMEK8_kWgw/Todki7bprTI/AAAAAAAAAYI/59EE_sEPYZg/s320/100_7109.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5658602008046316850" /></a>Blowing out her candles! It took her several attempts, but that is okay.<br /><br /><a href="http://1.bp.blogspot.com/-_YdQbDbF6NQ/TodkjmpV3lI/AAAAAAAAAYY/E0JARc5EjnU/s1600/100_7116.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-_YdQbDbF6NQ/TodkjmpV3lI/AAAAAAAAAYY/E0JARc5EjnU/s320/100_7116.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5658602019646463570" /></a>Emily with a few of her gifts. She got some Hello Kitty stuff, a few outfits, and a scooter.Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-88238150583809541482011-09-21T22:23:00.005-04:002011-09-21T23:31:07.006-04:00Growing Up!My baby girl is growing up!<br /><a href="http://1.bp.blogspot.com/-3SPc-_AT_vg/TnqiqKTcqEI/AAAAAAAAAXo/Hq1cu0IPsuc/s1600/100_7066.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-3SPc-_AT_vg/TnqiqKTcqEI/AAAAAAAAAXo/Hq1cu0IPsuc/s320/100_7066.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5655011127321208898" /></a><br /><br />Emily started kindergarten last month and absolutely loves it. Her health is doing fairly well except for a recent cold that had her breathing hard all weekend... but hey, we have oxygen, so just turned it up temporarily and she was better after about 2 days. Otherwise, she is more active than ever, her PFT's are up a few more points, and she is doing great. <a href="http://2.bp.blogspot.com/-BSVzRHkeeFY/Tnqio3p2vEI/AAAAAAAAAXQ/0dIefN1QdNo/s1600/100_7057.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://2.bp.blogspot.com/-BSVzRHkeeFY/Tnqio3p2vEI/AAAAAAAAAXQ/0dIefN1QdNo/s320/100_7057.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5655011105135049794" /></a><br />(Above is first day of Kindergarten)<br /><br />For homework today, Emily brought home 3 books to read, and when I didn't immediately get to her (I started homework with Ryan), she hand wrote one of the books cover to cover. "I am a rabbit, I am a robot, I am a clown," etc. She is so eager to learn! Too cute! Then she presented me with several other pages of "homework" that she has been working on: her alphabet written over and over, a sheet that said, "I love my mom" about a thousand times, and random other words, letters, and numbers. When she gave that to me, she said, "It says I love my mom because I actually do really love my mom." So sweet! I mentioned that her lower case g needed some work, so little miss perfectionist made another page practicing writing her g's til she got it right. She says she will do "q" tomorrow because it is hard too. She has started trying to spell simple words on her own and has figured out that to make something plural, you can add an s. Doesn't always work out as she planned, but when she gets it right, she will say, "I am so smart!" And she is! I am truly amazed with her progress! She is going to be reading in no time! <a href="http://2.bp.blogspot.com/-0T_v7TQCnOk/TnqipdFIPcI/AAAAAAAAAXY/MDtf__O7C0g/s1600/100_7060.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://2.bp.blogspot.com/-0T_v7TQCnOk/TnqipdFIPcI/AAAAAAAAAXY/MDtf__O7C0g/s320/100_7060.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5655011115181555138" /></a>(Above is an example of one of her homework assignments. She worked on this for days and wanted to be certain hers was the sparkliest. I think she achieved her goal!)<br /><br />She started basketball last night, and that was just absolutely hilarious! Complete chaos as 4 coaches tried to teach 20 pre-school aged kids and kindergartners how to dribble and pass. The really funny thing was that Emily was far from being the worst player on the team, although she was just as far from being the best. None of the kids had a clue! So adorable and so funny to watch them play at that age!<br /><a href="http://4.bp.blogspot.com/-Rf9_MHFJZ7E/Tnqiqh79D4I/AAAAAAAAAXw/kU7YeGGCtf0/s1600/securedownload3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/-Rf9_MHFJZ7E/Tnqiqh79D4I/AAAAAAAAAXw/kU7YeGGCtf0/s320/securedownload3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5655011133665120130" /></a><br />(Above is Emily's first attempt at defense in basketball.)<br /><br />As I look at this amazing little girl, I am reminded everyday of how far she has come. When I brought her home from the hospital a little less than six years ago, her doctors made no promises about anything. Her oxygen levels had been so low, we were told that they didn't know how on target she would be developmentally, and I did not think a thing of it that she did not speak more than a few words til she was 3 and a half. I had made my peace with accepting whatever we could get, so I just assumed this was just Emily. But as time goes on, she is really coming into her own more than ever, and as I look at this almost reading, Hello Kitty loving, tomboy basketball playing, bike riding, wrestling, sweetheart of a girl one week before her sixth birthday, I am more certain than ever that she is truly amazing! <br /><br /><a href="http://1.bp.blogspot.com/-hNuKed7n9x4/Tnqipkv6pKI/AAAAAAAAAXg/M7COQ9WlGHc/s1600/100_7063.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-hNuKed7n9x4/Tnqipkv6pKI/AAAAAAAAAXg/M7COQ9WlGHc/s320/100_7063.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5655011117240067234" /></a>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-1188271883243934202011-06-13T19:34:00.002-04:002011-06-13T21:16:56.519-04:00"Look Mom, no training wheels!"<A href="http://3.bp.blogspot.com/-lXRIDQzphHI/TfajtY6lw0I/AAAAAAAAAXI/bWRD-prN3zk/s1600/mms_picture%2B%252823%25292.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 213px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5617857585368908610 border=0 alt="" src="http://3.bp.blogspot.com/-lXRIDQzphHI/TfajtY6lw0I/AAAAAAAAAXI/bWRD-prN3zk/s320/mms_picture%2B%252823%25292.jpg"></A> <br /><br />Emily has been working on learning to ride her bike for ages. She is 5 and a half years old, will be six in September, so this might not seem like a big deal to most. After all, Ryan could ride a bike since the first time he touched one at age 3, and there are lots of other kids riding a lot earlier than Emily. But most other kids don't spend their first years tethered to oxygen, so to Emmers, this is a very big deal! <br /><br />Last summer, she carted her oxygen around in a backpack most of the time, and it really limited her movements. She rode her bike often, with training wheels, often with the oxygen backpack. This summer, Emily has mostly opted to leave the oxygen inside, except for a few really hot days. We also moved next door to some little girls who spend a lot of time on their bikes outside, and Emily is eager to be one of the girls. Apparently, while Dad and Poppy were working on the deck out front the other morning, Emily infomed Poppy that she needs "those stupid training wheels" taken off. Well, he took them off and Emily tossed them in the trash for good measure. Emmers started riding the same day! She is so proud of herself! <br /><br />Health-wise, Emily remains the same. They started her on Theophylline a few weeks ago to see if it might help with some of the shortness of breath, and the only difference we see so far is that she doesn't seem as swollen as she has. Her weight 2 weeks ago was 64 pounds, and this morning, that was down to 57. Of course, that can all change overnight with Emily, so we're not making much out of that. As for whether the medicine is helping or not, I really don't know. She still seems to pant and takes multiple breaths during each sentence, especially if she is doing something while talking. And the heat is really getting to her! A few days, she has chosen to spend hours at a time sleeping with her oxygen on. Then there have been other times when she has been extremely active, even for Emily, and she has spent a lot of time outdoors the last month or so, so maybe the medicine has had something to do with that! <br /><br />All in all, Emily remains very well, and we feel very fortunate for that. Her PFT's are pretty good, and she remains stable in the problems she does have. Her breathlessness is not improving, but it is not getting worse either, so we can live with that. It has been over 2 years since she has been hospitalized. She is developing normally and for the most part seems to be a normal 5 year old. We feel so lucky and so eternally grateful for all that her doctors have done to help her over the years! <br /><br />That said, we do still have our concerns, and so much about Emily doesn't always seem "normal" to us. A lot of it, we choose to ignore, and we have gotten pretty good at "tuning out" her breathlessness. If it doesn't affect her, or if it isn't something that we can change, then why should we worry about it? Still, we are left with questions. <br /><br />One such question: I walked into Emily's room a few weeks ago and found her sleeping without oxygen, and her neck veins were jumping. I hooked her to the pulse oximeter, and SAT's were fine even without oxygen, but it just looked so odd. I turned on the Oxygen and this stopped. Pulse rate also decreased 30 points with oxygen. I took a short video to demonstrate what I am talking about. So I guess my question is, is this normal? Do you other ILD moms see this in your kiddos? In your healthy kids? My healthy kids do not do this, and Emily does not do this with her oxygen on, but she does when she is sleeping without it. Is this something I should even be concerned about? Is this just another example of Emily's body trying to compensate for her lungs, or is this a case of Mom paying too much attention? What do you all think?<br /><OBJECT id=BLOG_video-bf988dfae18f0b14 class=BLOG_video_class width=320 height=266 contentId="bf988dfae18f0b14"></OBJECT>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-22185837779148932732011-05-15T17:37:00.020-04:002011-05-15T18:56:36.796-04:00Dad's Graduation, Ryan's race, and 2 Birthday Parties<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-AFInLanHHKc/TdBS2sU7mBI/AAAAAAAAAW8/dSFb97Ksv8Q/s1600/225456_1373989206506_1735092447_591232_5002218_n.jpg"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607072635641632786" border="0" alt="" src="http://4.bp.blogspot.com/-AFInLanHHKc/TdBS2sU7mBI/AAAAAAAAAW8/dSFb97Ksv8Q/s320/225456_1373989206506_1735092447_591232_5002218_n.jpg" /></a><br />Wow, it's been a busy weekend! How many things can you cram into a few days time? And this was actually with skipping Freestyle State Finals! Imagine how crazy we would have been if we'd tried to squeeze that in too!<br /><br />Friday night was Denny's graduation. We were going to take all 4 kids, but in the end, we opted to leave Emily and Braylon with my Mom, and it was really a good thing we did. There is no way I could imagine sitting there for 5 hours with those two! Ashton and Ryan did get to see their dad graduate though, and we are all so proud!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/--9G9HsvBvLg/TdBOztENaFI/AAAAAAAAAVc/jLEQ1jiAtSY/s1600/100_6346.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607068186253813842" border="0" alt="" src="http://2.bp.blogspot.com/--9G9HsvBvLg/TdBOztENaFI/AAAAAAAAAVc/jLEQ1jiAtSY/s320/100_6346.JPG" /></a>Above is Ashton, Denny, and Ryan after Denny's graduation. Congrats Dad!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-tp0KWZonAbc/TdBOzWesxyI/AAAAAAAAAVU/f0C_4ehXWjc/s1600/100_6306.JPG"><img style="margin: 0px auto 10px; width: 240px; height: 320px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607068180190906146" border="0" alt="" src="http://4.bp.blogspot.com/-tp0KWZonAbc/TdBOzWesxyI/AAAAAAAAAVU/f0C_4ehXWjc/s320/100_6306.JPG" /></a>And then above is a picture of me with Ryan.<br /><br />Then Saturday morning was the Molly Datillo Run downtown, and Ryan competed in the boys grades K-3 half mile. Always the competitive one, Ryan was a little disappointed (tears and all) by his 24th place finish, but he did great! So proud of my Rhino!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/-EceyiOtQ0Xs/TdBPMZHDILI/AAAAAAAAAVk/kn8bpNFbmQg/s1600/100_6362.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607068610393743538" border="0" alt="" src="http://3.bp.blogspot.com/-EceyiOtQ0Xs/TdBPMZHDILI/AAAAAAAAAVk/kn8bpNFbmQg/s320/100_6362.JPG" /></a><br /><br />Then today was my Grandma's birthday party and also cousin Owen's birthay party. Happy Birthday Owen and Grandma!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-dd7NqlkFtLg/TdBRNJbx4WI/AAAAAAAAAWM/_PbwR61WPec/s1600/100_6400.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607070822388851042" border="0" alt="" src="http://4.bp.blogspot.com/-dd7NqlkFtLg/TdBRNJbx4WI/AAAAAAAAAWM/_PbwR61WPec/s320/100_6400.JPG" /></a>This is newest cousin Connor at Owen's birthday party.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-SjwdE7UrR_0/TdBRMopI6JI/AAAAAAAAAWE/WSlrbzAchr8/s1600/100_6389.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607070813586516114" border="0" alt="" src="http://1.bp.blogspot.com/-SjwdE7UrR_0/TdBRMopI6JI/AAAAAAAAAWE/WSlrbzAchr8/s320/100_6389.JPG" /></a>Emily playing at "Imagination Station" at Owen's birthday party.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-t2rzw3662-Q/TdBRMVxVt5I/AAAAAAAAAV8/SNIb_tbKOXg/s1600/100_6388.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607070808520636306" border="0" alt="" src="http://1.bp.blogspot.com/-t2rzw3662-Q/TdBRMVxVt5I/AAAAAAAAAV8/SNIb_tbKOXg/s320/100_6388.JPG" /></a>Braylon<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-JQU4kO-nivk/TdBRME0-6BI/AAAAAAAAAV0/qtpCJ-TLlUc/s1600/100_6383.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607070803972515858" border="0" alt="" src="http://1.bp.blogspot.com/-JQU4kO-nivk/TdBRME0-6BI/AAAAAAAAAV0/qtpCJ-TLlUc/s320/100_6383.JPG" /></a>Ryan all dressed up in his suit for Owen's birthday party. He said he wanted to look good, and I think he did!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-Mwx2_groZTc/TdBRL3YIiGI/AAAAAAAAAVs/oupdl9WeV9Y/s1600/100_6372.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607070800361850978" border="0" alt="" src="http://2.bp.blogspot.com/-Mwx2_groZTc/TdBRL3YIiGI/AAAAAAAAAVs/oupdl9WeV9Y/s320/100_6372.JPG" /></a>Emily smiles for the camera.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-NGvDwRa0GTI/TdBSeHch2dI/AAAAAAAAAW0/dwxQF5cW-qc/s1600/100_6452.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607072213424527826" border="0" alt="" src="http://4.bp.blogspot.com/-NGvDwRa0GTI/TdBSeHch2dI/AAAAAAAAAW0/dwxQF5cW-qc/s320/100_6452.JPG" /></a>Braylon and Owen play in cars.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-SkwoBZzoruo/TdBSdwzbFvI/AAAAAAAAAWs/KzbuLurME2c/s1600/100_6451.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607072207346538226" border="0" alt="" src="http://1.bp.blogspot.com/-SkwoBZzoruo/TdBSdwzbFvI/AAAAAAAAAWs/KzbuLurME2c/s320/100_6451.JPG" /></a>All sorts of fun things to do!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-n1Dfkh_-PTc/TdBSddo6KDI/AAAAAAAAAWk/w7c0RKSmIhA/s1600/222897_1373998886748_1735092447_591250_8127518_n.jpg"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607072202202163250" border="0" alt="" src="http://2.bp.blogspot.com/-n1Dfkh_-PTc/TdBSddo6KDI/AAAAAAAAAWk/w7c0RKSmIhA/s320/222897_1373998886748_1735092447_591250_8127518_n.jpg" /></a>Kids at Owen's party. Happy Birthday Owen!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-aIhUDcTuelY/TdBSdWrl3yI/AAAAAAAAAWc/QbpK2SGa-Uk/s1600/100_6368.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607072200334368546" border="0" alt="" src="http://1.bp.blogspot.com/-aIhUDcTuelY/TdBSdWrl3yI/AAAAAAAAAWc/QbpK2SGa-Uk/s320/100_6368.JPG" /></a>Owen blows out the candles on his really cool cake.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-JAj0mEUZMAA/TdBSdH_zIoI/AAAAAAAAAWU/5lBQtylo1kI/s1600/100_6393.JPG"><img style="margin: 0px auto 10px; width: 320px; height: 240px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5607072196392592002" border="0" alt="" src="http://2.bp.blogspot.com/-JAj0mEUZMAA/TdBSdH_zIoI/AAAAAAAAAWU/5lBQtylo1kI/s320/100_6393.JPG" /></a>And even Ashton got to play!<br /><br />We made short appearances at each, then rushed home to finish up on laundry and housework. After our busy weekend, and busy few weeks actually (moving houses plus working overtime the last few weeks), it feels great to just sit down a while!<br /><br />Emily has been doing well lately, except for a hoarse voice that has gone on for weeks. She has an appointment on the 23rd, so we are holding off til then. I am not sure if it is allergies (although she is taking Claritin) or maybe it is a side effect from her Advair. She has no sign of sickness, denies a sore throat, and looks great! I guess we'll see!<br /><br />In other news, Emmers is working hard at her letters and numbers and will "graduate" from pre-school next week. She just brought me a piece of paper with a sentence written on it. "My cat is fat." She was soooooo excited to have written this all by herself. :-) Yup, I think my baby is ready for Kindergarten!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-24510855727233886412011-03-11T09:17:00.002-05:002011-03-11T10:24:25.386-05:00March 2011Emily's cardiology appointment went well. Other than the little PFO that she has always had, they did not find anything out of the ordinary from a heart standpoint. The PFO is not causing her issues, and they don't reccomend fixing it. They say we should bring her back in a few years just to make sure everything remains stable, but they do not forsee any problems with her heart.<br /><br />The heart doctor said basically that Emily is out of breath because of her lungs, and any swelling is probably also caused because of her lungs during exacerbations. So as she has always been, I guess. We can deal with that, but it is just frustrating when we go to doctors and have them tell us how great she is, when anyone in their right mind can look at her and see that she doesn't breathe normally at all. What I took away from the pulmonology appointment was that Emily's pulmonary function was pretty much normal, and there is no pulmonary reason for her to be the way she is anymore, so it had to be something else. When they said we should see the heart doctor again, I almost had some hope that it would be the stupid PFO, they could fix it, and she could get on with her life. No such luck.<br /><br />Maybe I misunderstood at the pulm appointment, but I am getting really tired of everyone telling me she is fixed when she isn't! She's better, yes, a whole lot better than she was as a baby, but she is not fixed. If they can't fix her, I want them to stop giving me false hope and just let her life as she is. She does okay as long as she has her extra oxygen at night and her inhalers, and steroids when she is sick. But if they can fix her, then I want her fixed! I just wish I knew how to express this to the doctors! <br /><br />Part of me is longing for the old days with our old pulmonologist. I didn't like him because I felt like he didn't listen to us, but up until she was about 2.5, I felt like he always acted in her best interest and honestly was the only doctor I trusted with her life. He always knew the right thing to do. Emily survived the sickest times of her life, and I know he had a huge part in that! I couldn't have kept her going back then without his input, and for that, I am forever grateful! <br /><br />Of course after the crying I did in his office right after I had Braylon, I don't feel comfortable continuing to see him, and I don't feel he has any respect left for us. Then very next run-in, he declared Emily to be cured and stopped her oxygen....and you see how well that worked out for her. And then very next run-in, Braylon was in the hospital, I had to push some residents around to get Braylon properly cared for (and yes, I am THAT mom, and I will do it again in a heart-beat, you don't mess with MY baby!), so he was angry with me about that, and we had words that resulted in my breaking down into tears yet again. Soooo.....that really isn't an option for us. We see the other doctor, who I LIKE very much. But liking isn't everything....I just want her taken care of. That is the most important thing, and I will cry, beg, scream, fight, do whatever I have to do to make that happen! <br /><br />Sigh*<br /><br />Okay, rant over. <br /><br />So here's the thing....she is sick again, gagging, coughing, wheezing. Inhalers are keeping her going, but not well enough. It is her asthma acting up, and I pray that she improves quickly on her own, without steroids! The boys all have something similar right now too.<br /><br />I am getting ready to take Ashton to the doctor in a few minutes for something else entirely, what appears to be a broken finger (thank you wrestling practice). The boys are wrestling in the Indiana Folkstyle State Finals tomorrow, so we have to find a good solution for that finger, so that it can be stable, but he can still wrestle. He is already registered, and he has his heart set on Nationals this year...so he needs to go to State to qualify. <br /><br />Emily is sitting this State Finals out. We're hoping to get her back on the mat in time to qualify for Freestyle State.Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-66945271434922160912011-03-05T20:37:00.006-05:002011-03-05T20:54:52.201-05:00Emily's "Lucky Bear"Emily's cardiology appointment is on Monday, and I would be lying if I said I wasn't nervous. But we've been down this path before, and other than a minor heart defect (PFO), they have never found anything. I guess we will see if anything turns up this time. Obviously, something isn't exactly "normal" with her, and we are hoping for answers, and an easy fix would be great news too. Fingers crossed, but hopes are not up.<br /><br />Then next weekend is the folkstyle state finals. Emily qualified a few weeks ago, but I don't think she will be competing at State. Maybe next month at the freestyle finals, but I just don't think she is up for it right now.<br /><br />This picture below is of Emily all dressed out for wrestling in Jeffersonville a few weeks ago. I went to take her picture, and she pulled this little bear out of her bag...stated it was her "lucky bear." In fact, this bear has been with her from the very beginning, lying next to her in the ICU during her worst days as a baby (other picture). A lucky bear indeed! <br /><br /><a href="http://1.bp.blogspot.com/-Ta20rVCwFSQ/TXLn9TpDnXI/AAAAAAAAAVE/xF6X6vCRZFU/s1600/100_5003.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-Ta20rVCwFSQ/TXLn9TpDnXI/AAAAAAAAAVE/xF6X6vCRZFU/s320/100_5003.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5580777928695979378" /></a><br /><a href="http://1.bp.blogspot.com/-j-M1OohPcXM/TXLohuVWmrI/AAAAAAAAAVM/kB7-BGJHNNo/s1600/000_0007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-j-M1OohPcXM/TXLohuVWmrI/AAAAAAAAAVM/kB7-BGJHNNo/s320/000_0007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5580778554336385714" /></a><br /><br />This bear has been through so much with Emily, and I was surprised to see she still has it! Maybe we should bring it along on Monday for luck!! Couldn't hurt!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-65303448066749204762011-02-27T09:41:00.004-05:002011-02-27T09:51:10.228-05:00Welcome Baby Connor!<a href="http://4.bp.blogspot.com/-Rc1gO6iKeJw/TWpkedbqaAI/AAAAAAAAAU8/YqOTVBw5kUw/s1600/100_5362.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/-Rc1gO6iKeJw/TWpkedbqaAI/AAAAAAAAAU8/YqOTVBw5kUw/s320/100_5362.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5578381562911287298" /></a><br />Yesterday, we went to my mom's for the afternoon, and the kids had a great time playing with their cousins, Emalin, Aleah, and Owen. We also got to meet their newest cousin, Michelle's handsome baby boy Connor James. Braylon was not too thrilled with him, and he stayed right with me the entire day, seemingly afraid that I was going to give him up for that baby. Emily, on the other hand, delighted in holding and loving the sweet baby.<br /><br />Congratulations Sam and Michelle! And yes Michelle, you do make a pretty baby! :-)<br /><br /><a href="http://3.bp.blogspot.com/-DOrTCEnIfj8/TWpkeOj-MwI/AAAAAAAAAU0/UwcY3UOa9ag/s1600/100_5361.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-DOrTCEnIfj8/TWpkeOj-MwI/AAAAAAAAAU0/UwcY3UOa9ag/s320/100_5361.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5578381558919607042" /></a><br /><a href="http://3.bp.blogspot.com/-K4zsYn8bHlc/TWpkd-N_h9I/AAAAAAAAAUs/1MoA4hE0Fjw/s1600/100_5365.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-K4zsYn8bHlc/TWpkd-N_h9I/AAAAAAAAAUs/1MoA4hE0Fjw/s320/100_5365.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5578381554532452306" /></a>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-29035979818467440242011-02-25T17:20:00.012-05:002011-02-25T18:14:41.414-05:00BIG ChangesPulmonology appointment went well. Braylon was started on antibiotics and is doing much better. He was also started on inhalers, so mom's life just got a lot easier!!! No more bedtime Pulmicort battle. HOORAY!!!!!<br /><br />And then there is Emily....Emily blew the very best PFT's of her entire life, which is fabulous except for one little thing. She is still breathing like crap! <br /><br />So what does that mean?? The pulmonologist says that her symptoms do not seem to be coming from her lungs, and they want us to go back to the cardiologist, especially with the problems she has had with fluid retention the last several months. That appointment is scheduled for March 7. Hoping for answers, although not feeling too optimistic that we'll get any at this point. :-( <br /><br />I was looking back over pictures today, and wanted to share a few of exactly what I'm talking about. I am hoping the computer will let me load them in the right order, but not so sure about that. I'll do my best.....<br /><br />Emily in March of 2010 the night before the Folkstyle State Finals:<br /><a href="http://1.bp.blogspot.com/-vlQKQ2EzXWU/TWgtQZ3xsXI/AAAAAAAAATc/zseX_jJx8oM/s1600/100_1043.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-vlQKQ2EzXWU/TWgtQZ3xsXI/AAAAAAAAATc/zseX_jJx8oM/s320/100_1043.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577757898344345970" /></a><br />Now, this is Emily the following month wearing a wrestling singlet at the Boys Club Freestyle City Championship. She's the little girl in red. There had been a several pound weight gain in a few days time, back when her liver had become enlarged, and this picture was actually taken after all that had resolved, so believe it or not, she looked worse about 2 weeks before.<br /><a href="http://2.bp.blogspot.com/-r_TfNuvKwzA/TWguIbJmRNI/AAAAAAAAATk/2_orCZXNzsY/s1600/100_1531.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="http://2.bp.blogspot.com/-r_TfNuvKwzA/TWguIbJmRNI/AAAAAAAAATk/2_orCZXNzsY/s320/100_1531.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577758860760204498" /></a><br /><br />To further demonstrate how fast this came on her at that time, this is Emily on Easter morning. <br /><a href="http://4.bp.blogspot.com/--p61wk9rN34/TWgvQeOU5LI/AAAAAAAAATs/jUm7mJg56Uk/s1600/100_1163.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/--p61wk9rN34/TWgvQeOU5LI/AAAAAAAAATs/jUm7mJg56Uk/s320/100_1163.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577760098535924914" /></a><br />And Emily less than a week later, so swollen that none of her clothes fit her anymore. This outfit was actually the best thing we could come up with because literally NOTHING fit her. We took her to the doctor, and that's when they found the liver enlargement.<br /><a href="http://1.bp.blogspot.com/-WofN2M7wmhs/TWgvsCPmlnI/AAAAAAAAAT0/d0LpidvVSMg/s1600/100_13192.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="http://1.bp.blogspot.com/-WofN2M7wmhs/TWgvsCPmlnI/AAAAAAAAAT0/d0LpidvVSMg/s320/100_13192.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577760572061423218" /></a><br /><br />She remained swollen thoughout April:<br /><a href="http://1.bp.blogspot.com/-ijbxBMJz9mw/TWgwx6mDMII/AAAAAAAAAT8/72PvTeMeRB0/s1600/100_1563.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 180px;" src="http://1.bp.blogspot.com/-ijbxBMJz9mw/TWgwx6mDMII/AAAAAAAAAT8/72PvTeMeRB0/s320/100_1563.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577761772598931586" /></a><br />But was back to normal by May:<br /><a href="http://1.bp.blogspot.com/-65tCterjPts/TWgxP9QTVpI/AAAAAAAAAUE/2Fwv8v7A8ao/s1600/100_1860.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/-65tCterjPts/TWgxP9QTVpI/AAAAAAAAAUE/2Fwv8v7A8ao/s320/100_1860.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577762288709097106" /></a><br /><br />And since then, we've learned that it doesn't do it nearly as bad if we treat it with oxygen, although nobody will give us a reason for that. But it's happened over and over since, and she will puff up a few pounds, then lose it. Nothing as severe as that first time. <br /><br />Here she is on vacation in Florida in July:<br /><a href="http://3.bp.blogspot.com/-9QbBdYPdZhM/TWgy6KQ8fmI/AAAAAAAAAUM/rRt-QmQeu-k/s1600/100_2483.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-9QbBdYPdZhM/TWgy6KQ8fmI/AAAAAAAAAUM/rRt-QmQeu-k/s320/100_2483.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577764113267588706" /></a><br />And then a few days later:<br /><a href="http://3.bp.blogspot.com/-aks_F28NHr8/TWg0Z1qJOLI/AAAAAAAAAUU/W9ykAE6PNIg/s1600/100_2859.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-aks_F28NHr8/TWg0Z1qJOLI/AAAAAAAAAUU/W9ykAE6PNIg/s320/100_2859.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577765757003577522" /></a><br /><br />And there are many more examples, but I think you get the picture. She wakes up one morning all puffy, then one morning some time later, she'll wake up and be back to normal. The left arm and left leg are bigger than the right when she's like this. Not huge differences, but about an inch in her arm and a little under 2 in her leg. <br /><br />This last example is due, at least in part, to steroids. None of the other examples were though. Emily at her brother's birthday party Feb 12:<br /><a href="http://3.bp.blogspot.com/-MAp8TZSSwYY/TWg2G96RUrI/AAAAAAAAAUc/vVzN66L8PTI/s1600/100_5214.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-MAp8TZSSwYY/TWg2G96RUrI/AAAAAAAAAUc/vVzN66L8PTI/s320/100_5214.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5577767631824442034" /></a><br />And then 2 days later on Valentine's feeling absolutely miserable! <br /><a href="http://3.bp.blogspot.com/-IARRCHeNNus/TWg2gx0t5_I/AAAAAAAAAUk/QGbnSzTgIBg/s1600/100_5308.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/-IARRCHeNNus/TWg2gx0t5_I/AAAAAAAAAUk/QGbnSzTgIBg/s320/100_5308.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5577768075256522738" /></a><br /><br />Part of me wants me to allow allow them to convince that she is just a chubby kid and all this is normal. But then I hear the way she breathes..... And when the doctors were telling me she breathes that way because of air trapping and it wasn't something fixable, then it was a little easier to ignore it. But then they tell me now that her symptoms are not caused by her lungs, then someone please tell me what is causing them.....<br /><br />So what do you all think? Am I overreacting?Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-91761878593364406342011-02-13T15:47:00.003-05:002011-02-13T16:25:17.015-05:00Catching up<a href="http://4.bp.blogspot.com/-BFU2hI9rvrw/TVhK5ekAW0I/AAAAAAAAATU/x_OkowA32eA/s1600/100_5189.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/-BFU2hI9rvrw/TVhK5ekAW0I/AAAAAAAAATU/x_OkowA32eA/s320/100_5189.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5573286890188069698" /></a><br /><br />It must have been week before last that I first noticed little changes in Emily. She wanted oxygen on more, was a little more short of breath than usual, and just not quite herself. Then on Monday of last week, I noticed little wheezes, which were treated with Albuterol and went away. Monday night, she had a pretty fair bit of trouble while she was sleeping, and I had to turn her oxygen up to keep her oxygen levels in the mid 90's. The extra oxygen helped a lot, and she settled right down. Tuesday, Emily returned to school, and as the bus driver dropped her off that afternoon, she told mom that Emily had been breathing very hard at school and had to use her inhaler. Mom called to tell me this but said she seemed okay to her. When I got home Tuesday night, Emily was coughing her head off and wasn't feeling well at all. As the evening went on, Emily's sats dipped lower and lower, and by bedtime, her sats were 90 on her normal amount of oxygen, and she was not moving much air at all on the left. When she did get air through, it would sound like a very long low-pitched moan, but most breaths, there was no sound at all, not even air moving. And her work of breathing was awful. Very scary!<br /><br />I've seen this before, and it almost always affects that left side moreso than the right. Not sure why the left. It also responds very well to steroids. I immediately turned her oxygen up, gave her albuterol, and ran downstairs to get her some steroids. I had to dig through the medicine cabinet and combined the remains of 5 bottles to get a teaspoonful, which is what I gave. Within a short time, she was breathing much easier.<br /><br />She stayed home from school on Wednesday and went to her pediatrician, where they determined that Emily had likely been exposed to the flu, which had set her off. They put her on prednisone and Tamiflu, and she is much better already. Still coughing a lot, and now suffering from steroid side effects (tearfullness, moodiness, anger, flushed face, hunger, stomach upset, hyperness, elevated pulse, etc.). She is miserable from steroids, but she is doing a lot better. We definitely have a steroid love/hate relationship. Love what they do for her, but hate what they do to her.<br /><br />Yesterday was Braylon's third birthday, and also Denny and my 12th wedding anniversary. We celebrated last night with a little party for the Bray-man. Mom and my sister Michelle came over, and we all had pizza and cake. Braylon got a big wheel and a few little trucks, and he was soooo happy. He played with his toys while the rest of us played Wii. Had a great time! <br /><br />Then, of course, Braylon didn't wake up on his own this morning. Fearing he might be ill, I woke him up at noon, and sure enough, he was wheezing, coughing, had a fever, and then as time went by, ended up throwing up. So I fully medicated him, and he is feeling much better now. <br /><br />Pulmonology appointments for Emily and Braylon are scheduled for a week from tomorrow. Fingers crossed that everyone gets back to normal soon. We're so ready for warmer weather!!!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-52609002560728933052011-01-30T14:43:00.003-05:002011-01-30T15:46:05.789-05:00Happy Birthday Ryan!<a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TUXMo-XEE3I/AAAAAAAAAS8/WkCxIfSf4W8/s1600/100_4931.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TUXMo-XEE3I/AAAAAAAAAS8/WkCxIfSf4W8/s320/100_4931.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5568081518620054386" /></a><br />Ryan turned 8 this week (the 24th). Hard to believe my little baby Rhino is getting so big! Happy Birthday Ryan! Love you lots!<br /><br />It just so happened that Ryan was also "Star of the Week" at school this past week. Basically that meant this week has been all about Ryan. As I know it is hard on him being "the healthy one" and having to sacrifice so much attention to his brothers and sister, this was a really good thing for Ryan. I went to the school and ate lunch with him on Monday, he got to take in pictures of himself to show the class, he got to take in a collection of something special to him on Tuesday (he took his wrestling medals, ALL OF THEM!!!, LOL), and finally I got to write a letter to the class explaining what is so wonderful about the Rhino. I must have done alright with my letter because he came home beaming. Great to see!<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TUXMpW-W6fI/AAAAAAAAATE/49GC_Uj7Itw/s1600/100_4939.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TUXMpW-W6fI/AAAAAAAAATE/49GC_Uj7Itw/s320/100_4939.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5568081525227317746" /></a><br />In the above picture, Braylon waits to eat some birthday cake.<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TUXMocx5zcI/AAAAAAAAAS0/JYp8lDtraUI/s1600/100_4926.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TUXMocx5zcI/AAAAAAAAAS0/JYp8lDtraUI/s320/100_4926.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5568081509605821890" /></a><br />Above, Ryan and Emily give hugs to Mamaw's dog Dante.<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TUXMn93jyUI/AAAAAAAAASs/mxT0_ymGWbw/s1600/100_4872.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TUXMn93jyUI/AAAAAAAAASs/mxT0_ymGWbw/s320/100_4872.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5568081501308045634" /></a><br />And in this picture, Ashton and Ryan were having a little fun in the snow.<br /><br />Otherwise, the past few weeks have been fairly uneventful. Well, in the comparison to what we are used to anyway. I've always said that if it weren't for bad luck, we wouldn't have any. My truck broke down a few weeks ago, and it still isn't up and running. Rear trailing arms (upper and lower) broke right in two on both sides, so basically the Expedition is ready to fall right apart. Felt like all the wheels were turning as I parked it, and steering was impossible. Thankfully, this happened as I was pulling out of my mom's driveway, and not on the way to the wrestling meet 2.5 hours from home that we were getting ready to leave for. Just so happens that Denny is buying me his mom's old car, and we thought it would be cheaper to put it in the shop to get the brakes done, then I'd have wheels. No such luck. It's in the shop alright, but the job turned bigger than ever, so it's going to be at least another week before we can afford to get it out. Meanwhile Denny was driving us up the hill to mom's house to have a good look at the expedition when his explorer blew up. So yup, just like that, we are down all 3 cars, and I've had to resort to bumming rides to work. Story of my life, but this too shall pass.<br /><br />There has been a nasty bug going around at work, and I managed to get it a few weeks back and spent 4 days in bed with high fevers. I'm all better now except a little cough and head congestion, but now (of course) Braylon and Emily seem to be coming down with something. They've both been wheezy, pale, and moody for a few days, and Emily has been using her oxygen more often than normal, but otherwise, they seem okay. Emily did have one day of throwing up, which unfortunately began on the bus to school and gave her teacher quite a fright when Emily "turned funny colors and started gasping like she couldn't get her breath." She's over the vomiting now though, just the chest cold stuff. Fingers crossed that this is an easy bug for them to get over. <br /><br />Emily had a parent teacher conference at house Friday morning, and that went well. Emily continues to progress with her pre-reading skills, and she is right on the verge of putting it all together. The teacher feels she will be reading before she starts Kindergarten in the fall, so that will be good. :)Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-61731744372047005972011-01-07T23:49:00.007-05:002011-01-08T11:25:20.623-05:00Oxygen HelpsThey say a picture is worth a thousand words. If that's the case, have a look at these:<br /><br />This is Emily sleeping off her oxygen. We were watching TV, and she fell asleep on the couch last night.<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TSiKpQk_YQI/AAAAAAAAASc/GZX0JJBFxOg/s1600/100_4718.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TSiKpQk_YQI/AAAAAAAAASc/GZX0JJBFxOg/s320/100_4718.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5559846181418262786" /></a><br />Note how red her face is and the pale circle around her mouth and nose. She was really working hard to breathe in this picture, and her heart and respiratory rates were all over the place. Neck vein was also visibly pounding so hard, you could see it from across the room.<br /><br />Now look at Emily sleeping about a half hour later with her oxygen on. Very calm, relaxed, heart and respiratory rates down, and just look at her color! She was sleeping like a baby!<br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TSiLc4I_F3I/AAAAAAAAASk/BKurVsi8iKY/s1600/100_4723.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TSiLc4I_F3I/AAAAAAAAASk/BKurVsi8iKY/s320/100_4723.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5559847068211550066" /></a><br /><br />Not sure what it is about that little bit of oxygen that helps her so much, but we are so thankful that we have it available to help her rest easier. We know the difference it has made in her life.<br /><br />We are having problems with nosebleeds again, and from the amount of blood she's lost lately (soaked most of a towel Friday night), I'm guessing she might be anemic again. We've tried EVERYTHING for the nosebleeds, and they seem to improve for a while, then bam. Of course I know the ultimate answer to that is to wean the oxygen to minimize nose trauma, but with watching her work so hard to breathe every time we try, how can we do that? <br /><br />As always, we're open to suggestions.Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com1tag:blogger.com,1999:blog-1051540971400778995.post-54865784431460156932010-12-26T13:17:00.007-05:002010-12-26T14:10:49.886-05:00Merry Christmas to All!!!We had a great Christmas with family, and the kids had a blast with all their new toys. I worked 5AM-5:30PM Christmas Eve, so by the time I got off, I was wiped out. I knew it was going to be a battle to get them all in bed so Santa could come, then be back up at the crack of dawn to get gifts open and get to my mom's by lunch, so we opted to have Santa come before I went to pick up the kids Christmas Eve. They weren't expecting that at all, so it worked out really well. <br /><br />I came home and dealt with Santa right after work, then went and picked them up about 7. We drove out to Charlestown, IN to see their Christmas display (yes, in the snow). <br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TReNgiLwPmI/AAAAAAAAAQs/GNblxv2aSac/s1600/100_4536.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TReNgiLwPmI/AAAAAAAAAQs/GNblxv2aSac/s320/100_4536.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555064255456231010" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TReNgZZ5QEI/AAAAAAAAAQk/nc3EPM6fOlA/s1600/100_4522.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TReNgZZ5QEI/AAAAAAAAAQk/nc3EPM6fOlA/s320/100_4522.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555064253099622466" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TReNgAiC3VI/AAAAAAAAAQc/XmciVdX2hHo/s1600/100_4521.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TReNgAiC3VI/AAAAAAAAAQc/XmciVdX2hHo/s320/100_4521.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555064246422920530" /></a><br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TReNfrA_0sI/AAAAAAAAAQU/OjbFQHZgU10/s1600/100_4518.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TReNfrA_0sI/AAAAAAAAAQU/OjbFQHZgU10/s320/100_4518.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555064240647164610" /></a><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TReNfWaX8NI/AAAAAAAAAQM/GbiVlsAKH0k/s1600/100_4509.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TReNfWaX8NI/AAAAAAAAAQM/GbiVlsAKH0k/s320/100_4509.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555064235116458194" /></a><br /><br /><br />We then came home to discover that Santa had gotten there early. Wow, were they ever surprised! <br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TRePF94nzJI/AAAAAAAAARU/Apsh7f6Oc_c/s1600/100_4621.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TRePF94nzJI/AAAAAAAAARU/Apsh7f6Oc_c/s320/100_4621.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555065998058966162" /></a><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TRePFhXWkKI/AAAAAAAAARM/f9MEbJJDldk/s1600/100_4666.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TRePFhXWkKI/AAAAAAAAARM/f9MEbJJDldk/s320/100_4666.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555065990403231906" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TRePFQ51U6I/AAAAAAAAARE/xYa1MhFuLtQ/s1600/100_4671.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TRePFQ51U6I/AAAAAAAAARE/xYa1MhFuLtQ/s320/100_4671.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555065985984451490" /></a><br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TRePFBq5ZEI/AAAAAAAAAQ8/kOleb7anjMM/s1600/100_4588.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TRePFBq5ZEI/AAAAAAAAAQ8/kOleb7anjMM/s320/100_4588.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555065981895271490" /></a><br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TRePEmE_sgI/AAAAAAAAAQ0/fZsKQQA8SAs/s1600/100_4610.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TRePEmE_sgI/AAAAAAAAAQ0/fZsKQQA8SAs/s320/100_4610.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555065974488543746" /></a><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TReQZ4ShVMI/AAAAAAAAASU/LHXAXjlkUVY/s1600/100_4618.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TReQZ4ShVMI/AAAAAAAAASU/LHXAXjlkUVY/s320/100_4618.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555067439665992898" /></a><br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TReQZmut1CI/AAAAAAAAASM/CJmunTohFk4/s1600/100_4639.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TReQZmut1CI/AAAAAAAAASM/CJmunTohFk4/s320/100_4639.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555067434952414242" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TReQZVDZutI/AAAAAAAAASE/A-zp-qM8xJo/s1600/100_4629.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TReQZVDZutI/AAAAAAAAASE/A-zp-qM8xJo/s320/100_4629.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555067430207339218" /></a><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TReP4ySVI7I/AAAAAAAAAR8/Lv67qgZXGw0/s1600/100_4571.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TReP4ySVI7I/AAAAAAAAAR8/Lv67qgZXGw0/s320/100_4571.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555066871118898098" /></a><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TReP4l5utNI/AAAAAAAAAR0/w-C9D6Zz1QY/s1600/100_4580.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TReP4l5utNI/AAAAAAAAAR0/w-C9D6Zz1QY/s320/100_4580.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555066867794490578" /></a><br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TReP4WyYzWI/AAAAAAAAARs/wtu_OZHtRag/s1600/100_4675.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TReP4WyYzWI/AAAAAAAAARs/wtu_OZHtRag/s320/100_4675.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555066863737163106" /></a><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TReP4AxkVUI/AAAAAAAAARk/Wi0HWeqUL4Q/s1600/100_4554.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TReP4AxkVUI/AAAAAAAAARk/Wi0HWeqUL4Q/s320/100_4554.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555066857828144450" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TReP34fPdvI/AAAAAAAAARc/8_NyjMBRZ3I/s1600/100_4560.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TReP34fPdvI/AAAAAAAAARc/8_NyjMBRZ3I/s320/100_4560.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5555066855603795698" /></a><br /><br />We opened gifts Christmas Eve, then were able to sleep a little longer Christmas morning before going and starting it all again.<br /><br />We have a lot to be thankful for this Christmas. The biggest thing being that we've had no hospitalizations (knock on wood) this entire year for the first time since Emily was born in 2005. That is huge for us! <br /><br />Hope everyone had a wonderful Christmas, and we wish you the happiest of New Years! I'll leave you with Emily's ear splitting performance. She says it all!<br /><br /><OBJECT id=BLOG_video-ef24e60ea8a2e9e0 class=BLOG_video_class width=320 height=266 contentId="ef24e60ea8a2e9e0"></OBJECT>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-25633626088348816402010-12-05T10:22:00.005-05:002010-12-05T11:01:49.694-05:00When You're a Celebrity<a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TPu1rP5dFiI/AAAAAAAAAQA/UE1-dU7ZRD4/s1600/100_39642.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TPu1rP5dFiI/AAAAAAAAAQA/UE1-dU7ZRD4/s320/100_39642.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5547227120643413538" /></a><br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TPu1qYkMVsI/AAAAAAAAAP4/GNMGn2a5zcs/s1600/100_3947.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TPu1qYkMVsI/AAAAAAAAAP4/GNMGn2a5zcs/s320/100_3947.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5547227105790285506" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TPu1pw7Ls1I/AAAAAAAAAPw/rH4y2-DJAgA/s1600/100_3946.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TPu1pw7Ls1I/AAAAAAAAAPw/rH4y2-DJAgA/s320/100_3946.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5547227095149294418" /></a><br />Emily had her school Christmas party last week. All the Head Starts in the area met at the Moose for a lunch with Santa, and they performed their Christmas songs all together there. It was a really good turnout, and the place was packed! Thankfully, as I was coming from work so showed up very last minute, my mom showed up early to help set things up, and in the process, she landed us a table right in the front row. Couldn't have worked out any better for us!<br /><br />Emily was soooo excited about the whole thing! Every little bit, she'd think it was time to go sing, and she'd make a run for the stage (and I do mean RUN)! No stage fright there! LOL! The singing itself was very short and sweet, and then it was time for lunch and then the long awaited meeting with Santa. <br /><br />Does Emily believe in Santa Claus? Oh yeah! She could hardly contain her excitement in line and could not wait to get on his lap for her picture. Of course, it was supposed to be a quick picture for the school, but Emily was sure to place her "order" as well. :-) She quickly smiled one goofy grin for the camera, then turned around and started in on him. It was all just too cute, and the newspaper was there and started taking pics. <br /><br />After they managed to get Emily off Santa's lap, the newspaper man chased her down and asked her what she had been discussing with Santa, her name, and her age. I kind of wondered if she'd make the paper, but of course out of the hundreds of kids there, what were the odds they'd go with that picture? Well, of course, this is Emily we are talking about, so I should have known! Emily made the big picture right on the front page! She was soooo excited, and everyone has been teasing her about being a "celebrity." I hope this link works. <br /><br />http://madisoncourier.com/main.asp?SectionID=178&SubSectionID=961&ArticleID=60017&TM=38140.95<br /><br />In other news, we seem to have a tummy bug floating around the house and a nasty cold as well. I've been sick for over 3 weeks now with sore throat and sinus stuff and am hoping I'll get over this soon. Ashton had a really bad asthma attack last week, and I almost had to call 911 for him at 4:30 AM the other day. His airways got so tight, he couldn't even get out the word "help," but he came out of it with 6 puffs of his albuterol inhaler, a neb, and a dose of steroids. That's the good thing about Ashton, he comes out of it quickly. Emily and Braylon have the cold as well, and we've been doing Albuterol nebs on them all week, and Emily has needed extra oxygen. They are still wheezing, but they are holding their own. Nothing a doctor would do any different right now anyway unless we wanted to do steroids, and I don't think we are to that point yet.<br /><br />Christmas is approaching quickly, and I think we are getting a tree today. We've never been able to do a real tree since the kids have been born, but we are feeling brave this year. Denny was up all night doing homework and is sleeping now, but when he wakes up, he promised to take the boys to cut down a tree. This should be interesting. :-) <br /><br />Kids are getting ready now, even vaccuuming for me in anticipation of making everything Christmas perfect! They are too sweet!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-34580253200136510492010-11-21T09:35:00.004-05:002010-11-21T10:31:07.702-05:00November 21, 2010I came to the realization today that Emily measures time by number of days with Mommy, meaning my days off work. Wow, that really makes me feel like a heel! I hate leaving the kids anyway, but to hear her tell Ryan, "You need to get ready for school. This is the last day with Mommy, and that means you have school." Well, it's actually not my last day before going back to work, and the boys obviously don't have school on a Sunday. I have one more day off this week, but she was certain that she had counted right. Her whole plans for the day had revolved around this being "Mommy's last day" which to her meant my day with just her and Braylon.<br /><br />Instead, Emily, Ryan, and I went downstairs before the others got up to make cinnamon rolls. Ryan and Emily took Daddy breakfast in bed, and the other boys got to enjoy theirs when they got up. Very sweet morning with my middle two kids. And very yummy cinnamon rolls too. Just what my diet was missing, right??? LOL.<br /><br />We've all been passing a nasty bug around the last couple weeks. First was Ryan sick for 2 days, then Ashton for 2 days, then Ryan for 2 more. Then we had a couple good days and then Denny got a fever and sore throat for 2 days. Several days later, Braylon came down with a fever but no other symptom. He ran 103+ for 2 days, then got okay. I wasnt' so lucky. Wednesday at work, my throat started hurting. By Thursday night, I was running a fever and was barely strong enough to drive myself home. By Friday morning, I had nasty blisters in my throat, could barely breathe, and could do little more than sleep. Fast forward to Sunday....I'm finally awake! Throat still killing me, but I finally feel like I'm joining the real world. <br /><br />Only one who hasn't gotten it yet is Emily. Well of course she went to bed early last night claiming she wasn't feeling well and then woke up this morning coughing her little head off. I hope this isn't a sign of what's to come! Keeping my fingers crossed! She can't afford another lung infection.<br /><br />The pictures below are of Braylon and Ryan taken last night after Emily was in bed. Braylon won these little tops from the school fair a few days ago, and he stood on a kitchen chair for hours last night trying to spin them. He likes them so much, he even slept with them! So cute! And then the other picture is of Ryan and our cat Miss Oreo. Ryan and his cat are nearly inseparable, but this might just be taking devotion to a whole new level! <br /><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TOk6JQ9zLxI/AAAAAAAAAPo/EZzytfVuUXQ/s1600/100_4325.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TOk6JQ9zLxI/AAAAAAAAAPo/EZzytfVuUXQ/s320/100_4325.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542024747303513874" /></a><br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TOk6IY0cJMI/AAAAAAAAAPg/sCmwes57dg8/s1600/100_4324.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TOk6IY0cJMI/AAAAAAAAAPg/sCmwes57dg8/s320/100_4324.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542024732231869634" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TOk6HUFjBJI/AAAAAAAAAPY/J44xqYSUeRE/s1600/100_4322.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TOk6HUFjBJI/AAAAAAAAAPY/J44xqYSUeRE/s320/100_4322.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542024713781576850" /></a><br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TOk6Gmm_JhI/AAAAAAAAAPQ/nVz55S5xIrY/s1600/100_4319.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TOk6Gmm_JhI/AAAAAAAAAPQ/nVz55S5xIrY/s320/100_4319.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542024701573801490" /></a><br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TOk6Fw8-UGI/AAAAAAAAAPI/t9SYqcO8Mts/s1600/100_4317.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TOk6Fw8-UGI/AAAAAAAAAPI/t9SYqcO8Mts/s320/100_4317.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542024687170506850" /></a>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-69475635225020043562010-11-09T21:53:00.003-05:002010-11-09T22:59:57.867-05:00ResultsEmily had an appointment in Louisville yesterday to get her recent test results. All in all, a really good appointment!<br /><br />HRCT scan showed the usual chronic changes but overall some improvement from the last one done a year ago. Sleep study didn't show much of anything which is also good...no obstruction, no CO2 retention, pretty good oxygen levels. And last but not least, Emily's PFT's were also up! So it really looks like things are continuing to improve, albeit very slowly. It's been 5 years now since we brought home our little tachypneic bundle of oxygen tubes and cords, and at that time, we had hoped she might be weaned off oxygen within 6 months. And here we are, 5 years later....<br /><br />Her doctor stressed that he does not yet feel Emily is ready to wean the nighttime oxygen, even though everything else is improving. As we're the ones who live with Emily, I can honestly say this is a good thing as well. While I'd love if we could get rid of it once and for all, I don't want her weaned until she is absolutely ready. Emily still has the shortness of breath, and when she's been off oxygen too long, she still gets very breathless and tearful. And if anyone has doubts, I challenge you to spend 72 hours with Emily without oxygen! She does still need it despite what tests might show, and she will let you know in a very loud, ear-splitting kind of way! And combined with her history and the fact that she is actually improving now, it just doesn't make sense to rock the boat. We are continuing things as is for now. Advair inhaler 2puffs twice daily, Singulair 5 mg at bedtime, and 0.5 liters oxygen at bedtime or when she otherwise needs it. Compared to the huge list of very harsh drugs she was on as a younger child, we've come so far!!!<br /><br />On a very bright note, I want to offer my hugest thanks to Emily's pulmonologist for actually hearing what we say! That is so huge, especially as we've had issues in the past with other doctors not hearing our concerns and refusing to see Emily as Emily, and instead only seeing the figures and numbers instead. Yesterday, Emily's doctor had another doctor following him, and that doctor did not relate to us very well. He kept asking the same questions over and over like he was reading them from a script, and he just couldn't fathom why Emily was still on oxygen and why we say she gets so short of breath when she looked so normal sitting there on the exam table. When Emily's doctor came in, he attempted to put into words Emily off oxygen versus Emily on oxygen. God love that man! He's never had to listen to her wailing at the top of her lungs for oxygen, and he's never seen her first hand puking in her bed and crying herself to sleep because her belly hurts so bad from essentially no stomach motility. He's never seen her lying on the ground crying at cheerleading because it is too hard to breathe and cheer at the same time when it is hot outside! He's never seen her try so hard to do things other kids do with ease, just to have some sort of normalcy. He has never lived with the real life Emily, but still he can look past the numbers and the figures and the test results and see Emily for who she is, a kid who uses oxygen to help her make the most of her life. I think he really GETS IT, and I REALLY appreciate that!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-2789067637124764102010-10-30T21:39:00.006-04:002010-10-30T22:21:11.992-04:00Trick or Treat!!!Had a fabulous night trick or treating! Lots of pics! <br /><br />It was a beautiful evening for it, and Emily did very well! We were able to walk for almost 2 hours (at a slow pace, of course), and I only had to carry Emily a little while toward the end. Braylon also walked this year and was so cute as he was really just learning what he is supposed to do. The first house, he didn't want to go to the door, but once he did and he got 2 miniature candy bars in his bucket, he grinned really big and turned around and ran towards our house. He was ready to eat it right away! When he realized he got candy at every house, he really got into it. I tried to teach him to say trick or treat and then thank you, but most of the time he would wait until he was walking away to say trick or treat. Emily, Ryan, and Braylon also had to stop to pet every single animal they saw along the way. Oh, and they also chased a poor squirrel up a tree. They really had a blast though! <br /><br />And a huge thanks to the Winters for coming along and making Ryan's night! <br /><br />Emily's quote of the evening, "Bray-man, I have a really good plan. When we get home, we're going to eat candy until we fall asleep." Braylon was in complete agreement, of course!<br /><br />And now for the pictures:<br /><br />This first one is of the 4 kids together in their costumes. Braylon is Woody, Ashton is Peyton Manning, Emily is a princess, Emily's doll Emma is a fairy, and in the back, Ryan is a very enthusiastic cowboy!<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzLrW1fPWI/AAAAAAAAAPA/DP6by043Nws/s1600/100_4113.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzLrW1fPWI/AAAAAAAAAPA/DP6by043Nws/s320/100_4113.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021987856235874" /></a><br /><br />Love the expression on Ryan's face!<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzLrLeT75I/AAAAAAAAAO4/ZCJhiTPZVKg/s1600/100_4119.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzLrLeT75I/AAAAAAAAAO4/ZCJhiTPZVKg/s320/100_4119.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021984806236050" /></a><br /><br />My sweet little Braylon Case<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzLq9wBpRI/AAAAAAAAAOw/JFpvl1BuXvA/s1600/100_4127.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzLq9wBpRI/AAAAAAAAAOw/JFpvl1BuXvA/s320/100_4127.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021981122438418" /></a><br /><br />Ashton, Logan, and a friend as Colts players. <br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TMzLKKB9fiI/AAAAAAAAAOo/dHxIltAqkvo/s1600/100_4123.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TMzLKKB9fiI/AAAAAAAAAOo/dHxIltAqkvo/s320/100_4123.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021417483206178" /></a><br /><br />Braylon and Emily<br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TMzLJi90MDI/AAAAAAAAAOg/TFuLzUybBac/s1600/100_4126.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TMzLJi90MDI/AAAAAAAAAOg/TFuLzUybBac/s320/100_4126.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021406996836402" /></a><br /><br />Love this one of Braylon!<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzLIxlEtxI/AAAAAAAAAOY/E171EMa7tlg/s1600/100_4130.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzLIxlEtxI/AAAAAAAAAOY/E171EMa7tlg/s320/100_4130.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021393739724562" /></a><br /><br />Braylon and Mommy<br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TMzLIqDIhJI/AAAAAAAAAOQ/QQ8hbVT-Jcg/s1600/100_4145.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TMzLIqDIhJI/AAAAAAAAAOQ/QQ8hbVT-Jcg/s320/100_4145.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021391718319250" /></a><br /><br />Braylon and Mommy without the glasses<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzLIfliZgI/AAAAAAAAAOI/RGEhY4kAQ90/s1600/100_4146.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzLIfliZgI/AAAAAAAAAOI/RGEhY4kAQ90/s320/100_4146.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534021388909831682" /></a><br /><br />Emily and Mommy<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzJvk4paZI/AAAAAAAAAOA/Rwi_0Eq8LV8/s1600/100_4147.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMzJvk4paZI/AAAAAAAAAOA/Rwi_0Eq8LV8/s320/100_4147.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534019861323803026" /></a><br /><br />Ryan and Braylon<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzJvJq0hxI/AAAAAAAAAN4/I1MsKuUi5ik/s1600/100_4149.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzJvJq0hxI/AAAAAAAAAN4/I1MsKuUi5ik/s320/100_4149.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534019854018053906" /></a><br /><br />Braylon with Ryan's drink. Shhhhhh....Wow, this stuff is good!<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzJu-0ZmvI/AAAAAAAAANw/7mDwj1h7seI/s1600/100_4151.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzJu-0ZmvI/AAAAAAAAANw/7mDwj1h7seI/s320/100_4151.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534019851105442546" /></a><br /><br />Ashton and Emily resting on a bench.<br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TMzJutd7CBI/AAAAAAAAANo/gLHnaobGwNs/s1600/100_4155.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TMzJutd7CBI/AAAAAAAAANo/gLHnaobGwNs/s320/100_4155.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534019846447761426" /></a><br /><br />Cousin Eli, his friend, and Denny...2 nerd costumes and one natural! <br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzJuDPwg2I/AAAAAAAAANg/e1QaGqYYzwY/s1600/100_4158.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TMzJuDPwg2I/AAAAAAAAANg/e1QaGqYYzwY/s320/100_4158.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5534019835114062690" /></a><br /><br />Happy Halloween!!!!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-64112202608510746722010-10-29T17:04:00.005-04:002010-10-29T18:21:25.934-04:00Testing<a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TMtH7WFMKpI/AAAAAAAAAM4/31ovurlIpe8/s1600/100_4069.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TMtH7WFMKpI/AAAAAAAAAM4/31ovurlIpe8/s320/100_4069.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5533595652019989138" /></a><br />Emily had her sleep study and chest HRCT last night/today. Sleep study was added on a little last minute, and it was a scramble to get the boys' homework finished, get packed, drop Braylon off with my mom, get Emily supper, and make it to Louisville by 7. I found out about the test at around 3 in the afternoon and was at work at the time (scheduled til 5:30). Home is 15 minutes in one direction, then 15 minutes in my mom's direction, then a good hour from there to Louisville, plus needed time to find the sleep center. Thankfully Bridget was able to get Emily showered and dressed before I got home, and my wonderful boss let me leave just before 4 or we never would have made it!<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMtH7kRaTXI/AAAAAAAAANA/jDy0wbqSA4Q/s1600/100_4073.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMtH7kRaTXI/AAAAAAAAANA/jDy0wbqSA4Q/s320/100_4073.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5533595655829343602" /></a><br /><br />The test itself went okay I guess. I had some concerns with the way they did some things, but we won't get into those. Emily had concerns with all the wires (see pic above!!). I will say that I watched the little CO2 monitor, and the number I saw most of the time was 44.9. I also saw up to 46.9 (middle of the night) and down as low as 33.9 when she was laughing right before going to sleep. Her respiratory rate itself ran in the 30's most of the night and may have been a little higher on the O2 than off (they used mask oxygen and I don't think enough...again with the technique thing). Early this morning, she did have some rates in the teens off oxygen. Not sure what all these numbers mean or what they're going to say about them...Guess that's why we do the sleep study, so they can interpret this stuff! <br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMtH7zYhxJI/AAAAAAAAANI/YhAvKPnpK9w/s1600/100_4083.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMtH7zYhxJI/AAAAAAAAANI/YhAvKPnpK9w/s320/100_4083.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5533595659885724818" /></a><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TMtH8CIu3DI/AAAAAAAAANQ/3ilelyZa30I/s1600/100_4091.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TMtH8CIu3DI/AAAAAAAAANQ/3ilelyZa30I/s320/100_4091.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5533595663846005810" /></a><br /><br />The HRCT was done this morning under general anesthesia, which meant she had to be intubated. She did fine with it all until it was time for her to wake up and breathe on her own, and she couldn't seem to get her breathing in order. Even though in the end she did fine, it was still very scary for a mom to see. Pic below is when she was finally coming around a little.<br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TMtH8RXrZOI/AAAAAAAAANY/7NCKUqz8o3g/s1600/100_4104.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TMtH8RXrZOI/AAAAAAAAANY/7NCKUqz8o3g/s320/100_4104.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5533595667935225058" /></a><br /><br />She has a follow-up appointment on the 8th of November with her pulmonologist, so hopefully we'll get results then!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-25828250897781684802010-10-20T17:53:00.002-04:002010-10-20T19:12:35.617-04:00Called the doctor, and they have decided to put Symbicort down as one of Emily's "allergies" as she has tried it twice with the same response both times. Possibly not a true allergy, but she is definitely having some sort of a negative effect from it. So now we are back to trying to figure out if there is anything that can be done for the breathlessness (which seems to be getting worse the last month or so), other than what we are already doing. Next thing we are going to try is restart the Advair and also the Singulair that was stopped in the spring with Emily's liver issues. Honestly I don't see the Singulair helping much (never seemed to before), but hey, it's worth a shot. Only other thing I can think of that ever really helped at all was the Zithromax, but which also had to be stopped with the liver stuff. I don't expect Emily's breathing to ever be perfect, but I'd like to see her back to the point she was last winter and spring. If the Singulair doesn't help, I'll ask about Zithromax again, but I know they don't really want her on any macrolide antibiotics if they can help it. If there is any real risk to her liver, it isn't worth it. HRCT is next week, but insurance is being difficult so we are going to have to wait on the sleep study. :-( <br /><br />As for Braylon, he was a very sick little boy last night when I got home from work. Weak, sleepy, wheezy, snap crackly popping rice crispies in his lungs, just pitiful. Took him to the doctor and it seems he has a bit of pneumonia. He is now on neb treatments and antibiotics and is already much perkier, although still quite wheezy. Poor little guy! Hate it when my babies are sick!<br /><br />Other kids are doing well. We had parent-teacher conferences Monday, and Ashton came out with straight A's, and Ryan (who is still graded by number system) has all 4's and one 3 (which is basically all A's except one B). The 3 was because of participation points in Reading class, because Ryan is so quiet in class (seriously??), he rarely takes part in their discussions. Both boys have been behaving themselves in school, and their teachers describe them as "a doll" (Ashton) and "just perfect" (Ryan). Pretty amazing really! And we won't even get into test scores. AShton's math scores were so good, Denny and I are both speechless over that one! Proud of all my kiddos, but so proud of my boys for all their hard work. Now if someone could just bottle some of that good behavior for home! <br /><br />I wish there was a way for me to stay home with the kiddos. They need consistency, and they need routine. They need me here for them when they are sick and to help them with their homework. There is just so much they do need from me really, and I hate that I have to entrust others with those things. And it really SUCKS that when I get home after putting in yet another 12 hour day with sick dying people who can't breathe, the kids are already in meltdown mode! When I'm home all day, they are on best behavior. It is when I've been working that they get out of hand. I'm tired of coming home to a house that's been trashed day after day. It's a losing battle! If there was some way I could work from home, I would! Or any other way in the world I could juggle their needs and still make money. We have to pay the rent, but I hate feeling like my kids aren't getting everything they deserve, and what they deserve most is a mom! I've got 4 great kids, and their life could be so much easier if I could only be here for them more! Yes, I'm always where there when it counts, but there are times when I have to leave them home when they are so sick, and I just have to pray they will still be there when I get home. Worst feeling ever! Okay, maybe it is just exhaustion talking (6 hours sleep in the last 62, and yes, I know my thoughts aren't flowing, and no, I'm not even sure anyone can follow them, and frankly I'm too tired to care right now), but there really has got to be a better way for families like mine!!! <br /><br />Thoughts???Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-71917015878515028852010-10-16T18:39:00.005-04:002010-10-16T19:25:56.649-04:00It has been less than a week since Emily started the Symbicort again, and as I feared might happen, she is coughing almost non-stop AGAIN. She was only on it about a week last time, and that is what happened then. She is also wheezing pretty bad. But then again, her brother Braylon is also coughing, so they may have just picked up a bug, BUT on the Advair, even with colds and illnesses, her coughing at least has been under control. Not true on the Symbicort. I am going to try to continue it (if we can) until Monday when the doctor office opens, then see what they want to do. I'm hoping all this is just coincidence, maybe just a transition period, and that she'll start improving. She sounds pretty pitiful though. I hate it when the poor baby is sick!<br /> <br />Pictures below were taken at Ryan's football game last week. Emily and Ashton chose to entertain themselves by tossing a football back and forth while Braylon played with dump trucks. <br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TLovuMjzI6I/AAAAAAAAALo/-oKORvAFQOg/s1600/100_4016.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TLovuMjzI6I/AAAAAAAAALo/-oKORvAFQOg/s320/100_4016.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528783963242570658" /></a><br /><br /><a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TLovuQn6pCI/AAAAAAAAALw/gjSSw5z9-Yk/s1600/100_4018.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TLovuQn6pCI/AAAAAAAAALw/gjSSw5z9-Yk/s320/100_4018.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528783964333581346" /></a><br /><br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TLovu9hdy_I/AAAAAAAAAL4/KV-CdGdB7qM/s1600/100_4021.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TLovu9hdy_I/AAAAAAAAAL4/KV-CdGdB7qM/s320/100_4021.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528783976386120690" /></a><br /><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TLovvQ9shsI/AAAAAAAAAMA/a_94bzJYe74/s1600/100_4024.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TLovvQ9shsI/AAAAAAAAAMA/a_94bzJYe74/s320/100_4024.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528783981604800194" /></a><br /><br />And this is a cute picture of Emily at Ryan's football game. <br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TLovvj8_a2I/AAAAAAAAAMI/0VgSsQFlr4s/s1600/100_4029.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TLovvj8_a2I/AAAAAAAAAMI/0VgSsQFlr4s/s320/100_4029.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528783986702117730" /></a><br /><br />This is a picture taken at Emily's "birthday dinner" at Ponderosa (only a week and a half late). We asked her if she could go anywhere in the world to eat, where she would like to go, and she chose Ponderosa to eat macaroni, meat, bread, and ice cream. She wasn't lying either. She ate really well!<br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TLoyYWYjUtI/AAAAAAAAAMQ/isV6Zo5OQNw/s1600/100_4037.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TLoyYWYjUtI/AAAAAAAAAMQ/isV6Zo5OQNw/s320/100_4037.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528786886457512658" /></a><br /><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TLoyY6syQDI/AAAAAAAAAMY/E2A_CzaOBV4/s1600/100_4038.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TLoyY6syQDI/AAAAAAAAAMY/E2A_CzaOBV4/s320/100_4038.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528786896206053426" /></a><br /><br />And then these were taken back at the football field when Emily was getting tired. She was too tired by the time Ashton's game was over that we went on home. <br /><a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TLoyZRgbL8I/AAAAAAAAAMg/IGk38H-JAbc/s1600/100_4043.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TLoyZRgbL8I/AAAAAAAAAMg/IGk38H-JAbc/s320/100_4043.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528786902328225730" /></a><br /><br /><a href="http://2.bp.blogspot.com/_xXswlUxfLCo/TLoyZ036soI/AAAAAAAAAMo/RMcoGbFY6jk/s1600/100_4046.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://2.bp.blogspot.com/_xXswlUxfLCo/TLoyZ036soI/AAAAAAAAAMo/RMcoGbFY6jk/s320/100_4046.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528786911822000770" /></a><br /><br />And then last but not least, I realized I have a pic of everyone but Ryan, so I'm putting in this one of him. This is of serious Rhino helping Daddy with a project for school. What a handsome boy!<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TLoyaAqWQQI/AAAAAAAAAMw/694CtPqcUH8/s1600/100_3998.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TLoyaAqWQQI/AAAAAAAAAMw/694CtPqcUH8/s320/100_3998.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5528786914986311938" /></a>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-1461929016419185462010-10-11T16:13:00.004-04:002010-10-11T16:56:01.195-04:00News from the Louisville AppointmentKids had a good pulmonology appointment today. We saw the nurse practitioner whom we really like! As for Braylon, I asked about his chest, and she said they see that in a lot of preemies and it is mainly just cosmetic. It is not as severe as Emily's and is not a worry. So that's good news. Otherwise his lungs sound good, and all his orders are staying the same. He did get a new nebulizer mask. And his weight is up 3 pounds! Thank you Pediasure!!!<br /><br />And then there is Emily. They asked me to fill out the little asthma assessment to see whether her asthma was under control or not. Mainly due to her near constant shortness of breath, she scored that her asthma is not under control. I'm not sure how accurate that is considering that she has other stuff going on in her lungs, not just asthma (and she wheezes very rarely), but the nurse practitioner reccomended we try Symbicort for a few weeks and see if that makes a difference. She was on that back in November and coughed the entire time, so hopefully that was just coincidental, but if she starts coughing again, I'm to call her back right away.<br /><br />Emily attempted PFT's today, but they were not consistent this time, although the best one was a little better than the one from the summer. That's good news. As for specifics, I did not see any numbers so don't really know, although I do know they aren't terrible. Her lung capacity is pretty good, I know. It's the other numbers that are usually "off."<br /><br />The nurse practitioner also reccomended we get a formal sleep study done (1/2 off oxygen, then the other 1/2 on it) specifically looking for other problems such as her ventilation and also look for stuff such as restless leg syndrome or anything else that may be causing her problems during sleep. They are going to call and set that up. <br /><br />Then the pulmonologist added that he really wants another HRCT scan of Emily's chest to see how things are progressing (or hopefully not progressing, but improving), which due to the fact that she has ILD and can't control how fast she breathes (and basically can't hold her breath at will), she will have to be under general anesthesia and intubated. :-( This will also help the doctors get the best images so that we can get the most information from the test. We've been through it many times before, but I always hate when they sedate her! This will be done October 29.<br /><br />Otherwise, it was a great visit. No wheezing, no coughing, no crackles this time. The only other thing is that the doctor came out into the hall before we left and told me that no matter what the tests show, even if everything were to come out completely normal, he strongly advises against weaning Emily off oxygen anytime soon. So for now it stays, maybe just for the time being, maybe forever. Whatever it is, we can deal with it, if we could figure out if there is anything we can do differently for the breathlessness. <br /><br />That is our only complaint right now, the frequent breathlessness, shortness of breath, tachypnea, whatever you want to call it. That and the tired moody whiney attitude it leaves her with. If we could ever reach a point when we can improve those things, we will be completely happy with where we are. Not that we are unhappy now, because we do know how far we have come and how bad things could be. We've been there, done that, so we will always be thankful for how far we have come, but at the same time, there is still room for improvement.<br /><br />Wrestling practice tonight, then it's back to work for me tomorrow. *Sigh* Always something!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-17467214454133787232010-10-06T23:57:00.003-04:002010-10-07T00:11:36.248-04:00Interesting LogicWrestling practice went fairly well tonight. Better anyway. The boys looked great, and while Emily didn't do any actual wrestling, she did do a lot of her drills and played a few of the games. Much better than sitting in the corner crying! <br /><br />After practice, she gave me a little chuckle. We were using the public restroom, and from the other stall, she called out, "Mommy, I think I'm going to quit cheerleading and just do wrestling all the time. Do you know why?" <br /><br />"No Emily, why don't you like cheerleading?"<br /><br />"You should know this, Mommy. I only love BOYS, not girls. You know that! I LOVE boys, and there are no boys at cheerleading, but there are lots of boys at wrestling. And at cheerleading, all the girls are all cute and pretty and stuff, but at wrestling, I'm already the prettiest one."<br /><br />Didn't know what to say to that! Little chicky cracks me up! <br /><br />As for if she is really quitting her cheerleading team or just all talk, we'll see. She is supposed to have practice tomorrow, and we're going to be there anyway for the boys' football practices, so we'll see....Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-63732733085883973222010-10-05T22:57:00.003-04:002010-10-05T23:39:17.287-04:00And there is no night two....<a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TKvvBLn5c_I/AAAAAAAAALg/CA2bJIDXESE/s1600/100_3989.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TKvvBLn5c_I/AAAAAAAAALg/CA2bJIDXESE/s320/100_3989.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524772171479086066" /></a><br />Emily did pretty well last night sleeping without her oxygen. <br /><br />That is unless you count the twitching and jerking all night long. I don't think she rested very well, which is pretty typical of what she does without oxygen. I really wish I had a better understanding of why, but I don't. But anyway, her sats stayed up (93-98, mostly in the 94-96 range), and she never really appeared to be in any acute distress. <br /><br />This morning she got up for school without problem, got dressed, and I even asked her how her breathing was. "My breathing is pretty soft," was her reply. "Soft" meaning the opposite of hard which is how she describes it when her breathing gets bad. Respiratory rate was mid 30's, so I sent her off to school where she remained for 5 hours. <br /><br />At 12:20, she returned home. Crying screaming tantrum girl had taken over! Spent the next hour listening to her wail because she wanted milk, I put it in the wrong cup, Braylon was looking at her funny, Ashton was supposed to be at school (he was home sick today), she didn't want to stay with Aunt Bridget (I had an eye appointment), that I am HER Mommy and it isn't fair that she never gets me to herself. And then she admitted it, "My head hurts, my belly hurts, I feel too tired, and I need my oxygen." I think pic below says it all!<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TKvvA4w6K0I/AAAAAAAAALY/TL-Qt4eZfGo/s1600/100_3987.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TKvvA4w6K0I/AAAAAAAAALY/TL-Qt4eZfGo/s320/100_3987.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524772166416608066" /></a><br /><br />I carried her back upstairs with her little arms clinging around my neck, checked her sat, and it was 97% (very good), but her heart and respiratory rates were up <br />(170's and upper 50's), so we put the oxygen on. She cuddled up on her bed for only about a half hour with her cat and favorite doll, and she was happier almost immediately. Then Bridget came over with Daisy and Lilly, so the oxygen was off again.<br /><br />I did take her to cheerleading tonight, which went better than last time. She cheered for about 5 minutes, then stopped and pouted on the ground. She cried most of the way home and fell asleep right after supper.<br /><br />I went ahead and put her oxygen on her tonight, and she looks much more peaceful. Her respiratory rate is 22 breaths per minute, her pulse is 82, and her oxygen saturation is 98% on 1/2 liter oxygen. And none of that twitching jerking stuff, she's out like a light! <br /><br />I wish I had a better understanding of the physiology of what is going on with her and why she can keep her sats up without oxygen, but at the expense of everything else. If you recall, during the time Emily was off oxygen at age 3, she barely spoke at all, was weak, tired all the time, vomited multiple times day and night every single day, and was just not well. That and she practically lived with "pneumonia." A little oxygen turned all that around for her, and while I would like it if she could get rid of it, I just don't know when or if that will ever happen for her.<br /><br />So our little oxygen weaning experience has failed yet again, this time even quicker than the last. But last time, she spent several hours wailing, and I didn't want to push her that far again...not sure my ears could have standed that! At least we did try, and now I know what to tell the doctor on Monday when he asks.Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com2tag:blogger.com,1999:blog-1051540971400778995.post-77397596919490557152010-10-05T00:14:00.003-04:002010-10-05T00:25:35.026-04:00Night 1Night 1 of sleeping without oxygen:<br /><br />"Emily, are you going to be able to do this?"<br /><br />"Yeah, I think so. My belly hurts, but my breathing is okay."<br /><br />Relaxed resting in bed (but awake) respiratory rate was 34, pulse 118, O2 sat 98. Looking good! <br /><br />She kissed Mommy goodnight, lots of giggling with Braylon, then off to sleep.<br /><br />Midnight, went in to check her, and she still looks good, but she is starting to show little signs of what she does. Respiratory rate down to 25, pulse 98, and O2 sat is 94-96. Still pretty good. Thing is, everytime the sat drops to 94 (about 3 times per minute), she jerks her hands and legs (a lot like a baby with the startling reflex) which increases her pulse to the 110 range and increases the sat to 96. <br /><br />Otherwise, she looks good. Not sure how well she is resting with all this jerking, but she looks good. Fingers crossed!Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-78828628350558406882010-10-04T17:39:00.005-04:002010-10-04T19:09:43.488-04:00Cooler Weather at Last!This is a picture of Ryan and Emily taken when Emily was supposed to be cheering. Note she is on the ground playing trucks instead, and in this pic, Rhino is actually saying, "Emily if you aren't going to do it, then I'm going to take your spot." And he did too for a couple of minutes, til Dez ran him off by kicking him. Gotta love the Rhino!<a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TKpYOwmFGqI/AAAAAAAAALQ/9hOnIzJb7jE/s1600/100_3759.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TKpYOwmFGqI/AAAAAAAAALQ/9hOnIzJb7jE/s320/100_3759.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524324903509367458" /></a><br /><br />This is a picture of Emily and her cheerleading team. Emily is the shortest one in the pic, 4th from the left.<a href="http://4.bp.blogspot.com/_xXswlUxfLCo/TKpYOVMWP4I/AAAAAAAAALI/Cs0bSbConiE/s1600/100_3753.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TKpYOVMWP4I/AAAAAAAAALI/Cs0bSbConiE/s320/100_3753.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524324896153681794" /></a><br /><br />This is a picture of Dez and Emily getting ready to cheer in their first game.<a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TKpYOKxivPI/AAAAAAAAALA/haAm-DPbi-U/s1600/100_3748.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TKpYOKxivPI/AAAAAAAAALA/haAm-DPbi-U/s320/100_3748.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524324893356899570" /></a><br /><br />And this is Emily's favorite part of cheerleading, making posters! Maybe I'd be better off to enroll her in an art class instead! :-)<a href="http://1.bp.blogspot.com/_xXswlUxfLCo/TKpYN3F1ySI/AAAAAAAAAK4/U8jeIDbWh6w/s1600/100_3624.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TKpYN3F1ySI/AAAAAAAAAK4/U8jeIDbWh6w/s320/100_3624.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524324888073324834" /></a><br /><br />And yeah mom, sorry, but I've just gotta include this one! This is an adorable picture of Braylon kissing his Mawmaw through the fence at the football field!<br /><a href="http://3.bp.blogspot.com/_xXswlUxfLCo/TKpYNW-BuqI/AAAAAAAAAKw/-be2_mTCd5o/s1600/100_3723.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TKpYNW-BuqI/AAAAAAAAAKw/-be2_mTCd5o/s320/100_3723.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5524324879450618530" /></a><br /><br /><br />As you can see, it's been an exciting but busy month! Emily had her fifth birthday and Ashton had his tenth birthday all within six days time! Wow, hard to believe how fast my babies are growing up! Emily's health is stable right now, for which we are very thankful. She is still breathing fast and hard (as she always has) and still has issues with pretty bad breathlessness during activity, but she's stable. The other kids have had recent ups and downs (mainly asthma related stuff and viral illnesses), but we are getting through that as well. Ashton and Ryan are both doing amazingly well at school this year which is wonderful to see! Emily is also very happy to be back in school and is doing well, having only missed one day so far this year, and that was just because she refused to get dressed for her dad because she said she had bad breathing that day. So just an "off" day, not a real illness. Knock on wood, hope the good health continues!<br /><br />Braylon and Emily have an appointment with their pulmonologist next Monday, and wow, I'm already getting nervous about that! I know it sounds silly to get so nervous about an appointment that is basically just a check-up, but it seems like I never know when "just a check-up" is going to turn into something much more stressful, and I feel like there is a limit to what I can say at the pulmonologist's office also. A misunderstanding between the doctor and me just about led me to a nervous breakdown a few years ago. (No, I'm not exaggerating either.) So for back-up, I'm bringing Bridget to help me handle both Braylon (and Braylon's super loud crying) and Emily so hopefully the doctor and I will be able to hear and understand each other well, and also hopefully Bridget will give me a little extra backbone. Don't know why, but I always need a little extra in that department when dealing with specialists. :)<br /><br />I'm on vacation this week, and since we are still having insurance issues and apparently don't qualify for any additional help either, and since the cost to continue to rent her medical equipment is so much, I am hoping against all odds that since the weather has cooled down to a more comfortable range, maybe this might just be the time when we will finally be able to wean the O2, right now before flu season hits. She's five now, and if it is ever going to happen, now would be the time! And if not, then at least I'll have it documented in writing exactly what happened when we tried to wean her, and it'll be recent enough (since her appt is Monday) that maybe the doctor will be able to help us line up something else. So that's the goal...no, I don't see it happening, but we're going to give it our best shot and see how long we can go, and document vitals AND behaviors along the way, starting tonight! Wish us luck!<br /><br />Other things I hope to gain from the pulmonology visit...Braylon's chest is beginning to look a whole lot like his sister's, with the protruding sternum, sunken ribs, then flaring ribs at the bottom. If Emily's grew like that due to her lung disease, then what are the odds that Braylon's is also growing that way due to lungs. Right now, he has a diagnosis of chronic lung disease of prematurity, which has always seemed a bit odd to me since other than mild retractions, he never had respiratory issues at all until he got RSV at ten months old. He was a 3 pound preemie and was only on the vent 1 day and on oxygen 1 day and always had an oxygen saturation of 99-100% even throughout being severely ill with NEC as a young baby. He was always fine til the RSV, and only then did he have to do oxygen for a while. The pulmonologist wanted to do an IPFT a few months back, but it was cancelled due to illness, then wasn't rescheduled because he seemed to be doing so much better. I'm kind of wondering if we maybe should consider rescheduling that, just to be sure. He has become quite the fast breather lately as well, although probably still not fast as his sister. Also there has been recent worries by the ped that Braylon has fallen off the growth charts despite very good eating, so we are giving him Pediasure to help that. He has put on a couple pounds since then, but why would his growth have halted after finally having some good catch up growth?? I mean he was tiny for a long time, but once he did catch up, shouldn't he have held to the chart? Of course that may just be some excessive mom worrying. I'll admit it, I do worry about my babies!!! <br /><br />For Ashton's birthday, we surprised him with the thing he has been wanting, the DSI. Probably the last kid his age in the county to have one, he was soooo happy! But with a perfect progress report, how could we not reward that??<br /><br />And our little Emmers wanted a baby doll that looked like her! She ended up choosing her own...a brown haired brown eyed doll that she named Emma Lee. Imagine that! :-) That's our girl! I'll put pics from birthdays on as soon as I get them onto the computer.<br /><br />Until next time, thanks for checking in....Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0tag:blogger.com,1999:blog-1051540971400778995.post-3888860046772239812010-09-08T13:34:00.005-04:002010-09-08T15:45:02.848-04:00But she doesn't look sick!This month will mark a few milestones for Emily. First of all, the child who was not even expected to survive her newborn period will be turning 5 on the 29th. I can't even begin to put into words how special that is. When Emily was a baby and was not doing well, we were not given much hope that she could survive. Okay, that is putting it a little mildly. To rephrase, the doctors had everyone, including me, convinced that Emily's survival was virtually impossible. I mourned the milestones we would never have while praying the doctors could somehow be wrong. After days of that, I even resorted to bargaining with God to let her have just some of those milestones and we would fit all the living we could into whatever time we had. At that point, it became about quality of life more than just quantity. I think we have done a fairly good job with that, encouraging Emily to live life to the fullest and to never be afraid to try new things. And we've been so blessed in that she has done better than anyone ever could have predicted. Her lung disease is now stable, and while she is not exactly normal, she is not going to get worse and is going to grow up and live a full life, just one with obstacles. Obstacles, we can deal with! We feel so blessed!<br /><A href="http://3.bp.blogspot.com/_xXswlUxfLCo/TIfiO8kWmvI/AAAAAAAAAKA/vQY2UzcX4X8/s1600/100_3528.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5514625015143111410 border=0 alt="" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TIfiO8kWmvI/AAAAAAAAAKA/vQY2UzcX4X8/s320/100_3528.jpg"></A> <br />Other milestones, Emily started a new sport last night...cheerleading! No kidding!!! (See pic above.) Our little wrestling tomboy is now a cheerleader! BUT don't let that fool you, she is still first and foremost one of the boys. I must say that I am so proud of the way she handled herself last night! After practice, we were waiting for Ashton to finish with his football practice, so she went a few feet off to play with some of the other little girls. Definitely the smallest and youngest in the group (other girls were in the 6-8 year old range), she was a follower for a little bit, but then she surprised me. When the group of girls started picking on a little boy because they thought he was wearing a diaper, Emily turned on them and actually pushed the girls off the boy with Ryan and 2 of his friends there to back her up. Not something I expected, but I was pleased to see this side of her emerge. Her explannation was, "I like to cheer with those girls, but they were bad to that boy, and that is not nice. They wanted to pull his pants down in front of everyone, and I was not going to let them do that. They are bad girls!" Could it be? Our little Emmers is well on her way to becoming a good person, taking up for someone else! <br /><A href="http://3.bp.blogspot.com/_xXswlUxfLCo/TIfkhQrYz5I/AAAAAAAAAKo/Ezoh024rUVo/s1600/100_3598.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5514627528802226066 border=0 alt="" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TIfkhQrYz5I/AAAAAAAAAKo/Ezoh024rUVo/s320/100_3598.jpg"></A> <A href="http://3.bp.blogspot.com/_xXswlUxfLCo/TIfkg7l6gvI/AAAAAAAAAKg/RuDhK1337_E/s1600/100_3597.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5514627523142124274 border=0 alt="" src="http://3.bp.blogspot.com/_xXswlUxfLCo/TIfkg7l6gvI/AAAAAAAAAKg/RuDhK1337_E/s320/100_3597.jpg"></A> <A href="http://1.bp.blogspot.com/_xXswlUxfLCo/TIfkgcoiSEI/AAAAAAAAAKY/9mhbpubFiwA/s1600/100_3587.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5514627514831620162 border=0 alt="" src="http://1.bp.blogspot.com/_xXswlUxfLCo/TIfkgcoiSEI/AAAAAAAAAKY/9mhbpubFiwA/s320/100_3587.jpg"></A> <A href="http://4.bp.blogspot.com/_xXswlUxfLCo/TIfkfzJ_5DI/AAAAAAAAAKQ/_bwIwAQjtpo/s1600/100_3586.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5514627503697683506 border=0 alt="" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TIfkfzJ_5DI/AAAAAAAAAKQ/_bwIwAQjtpo/s320/100_3586.jpg"></A> <A href="http://4.bp.blogspot.com/_xXswlUxfLCo/TIfkfRjl24I/AAAAAAAAAKI/hFS5l13fdbg/s1600/100_3581.jpg"><IMG style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id=BLOGGER_PHOTO_ID_5514627494678223746 border=0 alt="" src="http://4.bp.blogspot.com/_xXswlUxfLCo/TIfkfRjl24I/AAAAAAAAAKI/hFS5l13fdbg/s320/100_3581.jpg"></A> <br />Then today Emily returned to her final year of pre-school (pics above). She was so excited! It was a really big day for her, and she met lots of new friends and saw a few old ones too. She got to play in her classroom, go out on the playground, get on the bus and look around, and even have a snack! By snacktime though, I think she was at the end of her rope and really could have used some oxygen at that point, but she suffered through it. About 2 minutes into snacktime, she burst into tears because one of the little boys (now get this) blew on her. That's right, he puffed his cheeks out and blew in her general direction, and Emmers cried about it. <br /><br />Melting down over nothing...That is a pretty good indication that Emily needed oxygen! She also had those black circles around her eyes and that skin that screamed, "I've had enough." The thing is, we don't have a doctor's order saying she can have oxygen at school. Reason being, Emily doesn't always need oxygen during the day, and the doctor hopes she can get by with just an inhaler at school with the hopes that she will continue to improve. I am really thinking more and more that we should consider having it at school just in case, for times like these (and for times much worse than these when she's surely going to be treated for "asthma"). I am going to discuss it with her pulmonologist at her next appointment, but not really sure how that will go over with anyone. <br /><br />Emily just looks so good, and I hear over and over from people who don't know and don't understand her lung disease that she doesn't look like there is anything wrong with her. But watching her breathe, I can't even imagine breathing that way for an hour, and she does it all day every single day. Attached video is of Emily just breathing last night. Granted, this is lots better and much much slower than it was in Emily's younger days, but this still isn't the normal way to breathe. This is 22 seconds of video. Look at her neck. How many breaths do you count? If I had to do this for long, I'd be crying for oxygen too! But "she doesn't look sick"??? Maybe not! We work hard at helping her not look sick! That doesn't mean her disease has magically gone away. It is still there, and over the years, we've come to view oxygen as a way to help her not have to breathe like this, as a way to help her feel more comfortable, not as a sign that she is somehow sicker. I just wish the rest of the world could see that too!<br /><OBJECT id=BLOG_video-dbfeb6486ace98c8 class=BLOG_video_class width=320 height=266 contentId="dbfeb6486ace98c8"></OBJECT>Amandahttp://www.blogger.com/profile/10819507002311156604noreply@blogger.com0