tag:blogger.com,1999:blog-30001477705335091982024-03-04T20:32:42.084-08:00Three Little KingsKarahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-3000147770533509198.post-24745890464815803902012-01-25T16:51:00.000-08:002012-01-25T19:49:48.492-08:00Apologies of an Overwhelmed MamaI'm sorry I didn't volunteer to chaperone the field trip. Or take on "Room Mom" responsibilities. Or notice that my kid needs his nails cut. Or his hair cut. I'm sorry if I didn't check his backpack. Or sign his homework folder. Or notice the note pinned to his shirt. Or the post-it note stuck to his forehead. Or sign him up for that activity before the deadline. Or even <span style="font-weight:bold;">know</span> there was an activity <span style="font-weight:bold;">with</span> a deadline. Or sign that permission slip. Or remember that it was a half day of school and pick him up on time. Or sell entertainment books. Or attend any parent teacher association meetings. Or contribute to any fundraisers. Or volunteer for any committees. <br /><br />I'm sorry if I didn't attend that play date we keep talking about. Or have you over. Or meet for coffee. Or call you back. Or send you a birthday card (even though Facebook reminded me). Or really nurture our friendship in any way apart from Facebook, for that matter. I'm sorry if I was recently impatient with you. Or didn't hear you. Or listen to you. I'm sorry if I wasn't up-to-date on world news. Or local news. Or even notice that the house across the street from me is for sale (it really is, by the way, if anyone is interested in living across the street from a really busy family who forgets to take the trash cans in sometimes). Sorry about that too.<br /><br />I'm sorry if I didn't eat right this week. Or exercise. Or drink more water. Or get eight hours of sleep. Or take time to read. Or take a long bath. Or notice that I need my nails cut. Or my hair cut. Is that a post-it note stuck to my forehead? I'm sorry if I didn't take care of myself <span style="font-weight:bold;">at all</span> this week, let alone taking care of myself first so I can care for others.<br /><br />I'm not being sarcastic. I <span style="font-weight:bold;">am</span> sorry. I <span style="font-weight:bold;">want</span> to do all of these things. All of them! Except maybe volunteering for a committee. But it all comes down to triage. And most of these things just haven't made the cut.<br /><br />The have to's (driving and school drop-off, a full time job (I usually work 8 hour days), plus errands, groceries, and cooking) take up most of the day, just like they do for anyone. And, of course, there's eating together, bath time, homework and bedtime routines (again, just like anyone else). What's left is devoted to, well, "special" needs:<br /><br />Feeding therapy (not real eating time, just feeding therapy) is the #1 priority right now, which includes 40 minutes per day of focused therapy time, plus preparing food options with Henry's esophageal stricture and extensive allergy list in mind. <br /><br />Next is calorie counting. He refuses most oral calories, so we had to add a tube feeding back in for a total of four one-hour feedings everyday. For an antsy toddler. Strapped into his booster seat so he doesn't crawl off and pull his tube out. <br /><br />And speaking of feeding, the therapist of choice (yes, my choice, I know) is 45 minutes away. I believe she's worth it, but she wants Henry to see her at least twice a week. He doesn't, because I can't make that happen. She also wants him to swim. Often. As much as possible. At minimum, once a week. She has great reasons. Wonderful reasons. Well-respected, <span style="font-weight:bold;">researched</span> reasons. But I just can't make that happen either. Not once a week. Not at all. Not right now. And she's understanding. She gets it. But as a mom, I want <span style="font-weight:bold;">so</span> badly to follow these recommendations, and it hurts that I can't make it happen. <br /><br />And this is just one therapist. Ideally, I am also following through with occupational therapy (make sure he finishes what he starts, opens, closes, stacks, pushes, points with his finger. . .), physical therapy (make sure he stands this way, plays this way, squats, steps, hold his hands lower, hold his waist . . .), speech therapy (don't let him do the sloppy sign, make him say it, keep track of his words, use the button to get your attention, practice and model, straw hierarchies, lip/tongue/cheek massage . . .), and behavior therapy (charting, antecedent, behavior, consequence, reward . . .). And I do. Usually? Sometimes? One of those. <br /><br />I completely left out his health care needs, which includes frequent phone calls and emails, monthly surgeries, supply orders and clinic appointments. <br /><br />And I also left out my other two children, who of course need a mama to give them time and love and a listening ear each day too.<br /><br />So again, I'm sorry. I really am. I want to be a Room Mom. I want to pack homemade snacks and help out at bake sales and volunteer at lunchtime putting kids' straws in juice boxes. I want to catch every memo and be on time and pay in advance. I want to meet you for coffee and call you back and remember promises. I want to take time for you and listen to you, applaud and encourage you. I want to have you over for dinner and cook for you. I want to hear about your day, your life, your schedule. I want to speak intelligently about current events, eat right, exercise, get plenty of sleep and take care of myself so I can wake up tomorrow and do it all over again. <br /><br />But I also want to cut myself some slack. I just hope others will too.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com9tag:blogger.com,1999:blog-3000147770533509198.post-55163307109889057182012-01-06T18:37:00.000-08:002012-01-06T18:59:22.267-08:00Growing Pains<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1zHLqch7culyrmHc6nyYxnkeuo7STVWlJHv3t3dyWJQeclicQWPTi7QIOWBGE2a0PkU0ugGNUKrccDf5SinQOXd6XpetjmwcqVjXCBgyGyg-xxURJjnxvdQtcFq0SsiEiyRHvw9wJefNX/s1600/IMG_5202.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1zHLqch7culyrmHc6nyYxnkeuo7STVWlJHv3t3dyWJQeclicQWPTi7QIOWBGE2a0PkU0ugGNUKrccDf5SinQOXd6XpetjmwcqVjXCBgyGyg-xxURJjnxvdQtcFq0SsiEiyRHvw9wJefNX/s400/IMG_5202.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5694719175114730034" /></a><br /><br />Take a trip back to grade school with me for a moment when the biggest insult in my hometown (besides "you kick like Kara," often heard at my soccer practices) was to call somebody a "weaver." We used the term freely as a put-down when someone was acting goofy, doing something we considered dumb, or if we really wanted to get a jab in and hurt someone's feelings. While most people would not consider "weaver" a derogatory term, it was. We all knew it referred to the Weaver School and Workshop, an organization in our town serving people with intellectual and physical disabilities - people with whom we had little to no contact (since this was before inclusion brought people with special needs into our classrooms) - people who seemed strange, silly, and even a little scary (as the unknown can often be). Imagine the social studies lessons about colonial jobs . . . blacksmiths, glassblowers, and weavers (now imagine the class erupting into giggling fits as the teacher moved the lesson along and tried to get us back to the point). By the time we entered middle school, most of us stopped using the term "weaver" as an insult. I guess somewhere along the way we grew a little and realized that it was immature and even hurtful. Being the mature and sensitive middle schoolers we were, we replaced "weaver" with "retard." I guess you could say we were a bit slow to learn. <br /><br />We still are.<br /><br />I was recently at an evening meeting run by our county's Intermediate Unit to educate parents and professionals about the process of transitioning a child with special needs into preschool. I walked in feeling a bit shy in the room of 100+ people who all appeared to know each other (excepting me) and chose a seat in the back row where I could eat my free pizza and hopefully glean some guidance about Henry's upcoming transition. I had chosen a seat behind a group of teachers, who were likely there for credits and free pizza (hey, no judgement here - after a long day of work, we all needed some enticement to sit through a 40 slide Power Point on education laws and individual rights). And so I sat, sipping my Diet Coke and killing time on Facebook waiting for the presentation to begin when I heard it. The R Word. Straight from the mouth of one of the teachers in front of me (who works in my county . . . possibly with my child someday). And before you suppose that this group may have been heralding the recent wave of advocacy against the R word and joining forces to "<a href="http://www.r-word.org/">spread the word to end</a>" it, I'll let you down and tell you that she was relaying a story about her day, repeatedly using phrases such as, "It's not like I'm retarded!" and "He was treating me like I was retarded!"<br /><br />And this is where SuperKara, Brave Mama, Special Educator, and Tireless Advocate for Henry . . . sat in stunned silence and did nothing. I know, I know. My shyness took over and the thought of confronting this woman in front of her colleagues and admitting to eavesdropping on their private conversation made my knees wobble. I sat, processing, burning, and did nothing. And oh, I regret it. What was I afraid of? She couldn't hurt me more than she already had. "He was treating me like I was retarded." How's that exactly? Worthless? Stupid? Less than human? Like someone who somehow warrants ill treatment? Like someone (gulp) SHE would treat in such a way if they were, you know, retarded?<br /><br />It's time to grow again. To mature. To leave behind the hate speech and evolve a bit, don't you think? But "retard" is not yet widely recognized as hate speech. Not when special ed teachers say it at county meetings. Not when my friends slip up and say it with self-deprecating humor. People justify their words with, "I didn't mean it like that," or "I didn't realize." Pleading ignorance excuses you just ONCE. I won't be shy anymore. Not about this. Not if I want Henry to experience the respect and dignity he deserves. I am going to be the obnoxious lady who interrupts your private conversation. I'm going to be the mom who calls the county to make sure their teachers are educated about hate speech. I'm going to be the party pooper who interrupts the laughter to ask her friends not to use that word. Sheesh, special parents are really annoying sometimes, aren't we? So are growing pains.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com8tag:blogger.com,1999:blog-3000147770533509198.post-40447912390463858262011-01-11T06:13:00.000-08:002011-01-11T07:52:07.912-08:00Treading New GroundIt would be impossible to say all that I'd like to say about the past few months in just one post. It's a long but hopeful story of a joyful boy with a tummy tube who continues to charm nurses and doctors with giggles and grins before he heads into surgery to dilate his esophagus each month. Henry is still not able to take anything by mouth, but they believe they are making progress (and we are all continuing to search for the cause of the stricture).<br /><br />But that's really just part of Henry's life. Feedings have become routine, and while I myself indulge in occasional wallowing about him sitting in his highchair 4 hours per day and missing out on my favorite of the five senses, HE remains the happy and curious bright-eyed boy he has always been. And he continues to develop in so many ways . . . .<br /><br />Thanks to his Early Intervention "Dream Team" which includes an Occupational Therapist, Speech Therapist, Special Instructor and two Physical Therapists (one of whom is an Aquatic PT), Henry has regained the abilities stolen by multiple weeks of illness and hospitalization. And now, we are treading new ground!<br /><br />Having read the studies on the use of treadmills to increase an infant with Down Syndrome's ability to walk, I was thrilled when Henry's new PT said she had access to one and would like to start using it with Henry. According to the studies, infants with DS walk earlier and more typically if they follow a prescribed routine on the treadmill. Above and beyond walking, other benefits will likely result. The researchers say, "When infants with DS begin to walk their opportunities to interact and play with their age-mates increases significantly. Motor activity-play provides exploration and opportunities for new forms of cognitive development to emerge." You can read the abstract in its entirety <a href="http://pediatrics.aappublications.org/cgi/content/full/108/5/e84">here</a>. <br /><br />I plan to keep a video record of Henry's progress. At this time, he does 8 minutes on the treadmill at the lowest speed (.1), five days per week. As you can see in the Week One video below (his very first attempt), he drags his feet, which is to be expected. Frequent use of the treadmill will jump-start his body's natural inclination to take steps and give him the motor memory to increase the number of steps and eventually walk on his own. I should mention that this should only be attempted at the direction of a qualified Physical Therapist using the proper equipment (don't try this at home, kids). ;) We are very fortunate to have access to an infant treadmill, as my own adult treadmill starts at .5, which would be way too fast. Infant treadmills are expensive and the research is relatively new, which means they still aren't available from most hospitals or service providers. I sincerely hope they will begin to prioritize the use of treadmills for infants with DS and provide them as needed for this very important developmental step!<br /><br />Here is Henry with his PT during his first attempt on the treadmill: <br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzbpqNLj8Ltcf46fEqmskuwXXPS-jFjDsDMFSaMIc_MHDbdX1lJycCIu6gP7jfYrlkJnccMibuaNe8pnTExew' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br />Go Hen!Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com7tag:blogger.com,1999:blog-3000147770533509198.post-35914963749479128502010-09-13T18:19:00.000-07:002010-09-20T08:58:21.829-07:00And That's What You Missed On . . .. . . Glee! No, I'm not going to post about Glee (though I am counting down the days . . . is anyone else a Gleek around here?). <br /><br /><br />What I AM going to do is try to recap our summer in little snippets and snapshots, attempting to showcase the highs and lows and get you up to speed, Glee Style. So, if you'll humor me, this post is created to be speed-read. Aaaaand, go:<br /><br />So Henry got home from the hospital and everything was going SO well (despite the ng tube) that we went to South Carolina for a vacation with friends and had a great time . . . <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9CtQyMyslPjMFZ1GlZBI1dbQWLBUu8OgkAS-nsacLBEcu-v9jOlg9fR86ZtZzR_bOoTpX-1l6fbb9OPN7RIFEewU_wQweBmDSY3OBNXKyfijig3W0Xne1fK_IaapaNo4JA7fO1X8AkI-B/s1600/beach+w.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9CtQyMyslPjMFZ1GlZBI1dbQWLBUu8OgkAS-nsacLBEcu-v9jOlg9fR86ZtZzR_bOoTpX-1l6fbb9OPN7RIFEewU_wQweBmDSY3OBNXKyfijig3W0Xne1fK_IaapaNo4JA7fO1X8AkI-B/s400/beach+w.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516580840414341522" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAKfGgf0kEqG7Q6uiFAyvHqtibwpG8_N6mjI_JyhEWG6vGOq9ueELsadiCYgcMVS_mq2B6-YBBTJWFK68Z10lP2EywlIC-2Zg2p4JlFRuQBvugKfYZxCFYXclIl6WA3U6N8bLI6x5TgDnV/s1600/beach+e.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAKfGgf0kEqG7Q6uiFAyvHqtibwpG8_N6mjI_JyhEWG6vGOq9ueELsadiCYgcMVS_mq2B6-YBBTJWFK68Z10lP2EywlIC-2Zg2p4JlFRuQBvugKfYZxCFYXclIl6WA3U6N8bLI6x5TgDnV/s400/beach+e.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516580828931100338" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY9pd0uUx8oSGvK9qQ0iZwn1TrWQBxK6SjF1Hn5hevlxQ3iFnyYaR7PvHBjMTMT815SOq0Sr-Svp22MWl0kuqCNJs4-etcrTvMO0UKIwWsud4c3s2riPqyQ7IlXFZSJPL6igm5M-DbXhTI/s1600/beach.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY9pd0uUx8oSGvK9qQ0iZwn1TrWQBxK6SjF1Hn5hevlxQ3iFnyYaR7PvHBjMTMT815SOq0Sr-Svp22MWl0kuqCNJs4-etcrTvMO0UKIwWsud4c3s2riPqyQ7IlXFZSJPL6igm5M-DbXhTI/s400/beach.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516580825711054082" /></a><br /><br />We also had lots of visitors and cheered for the Phillies . . .<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdooqyb_qy2WDQxlKLOjjRp7gM0d97twG1Nei3SYTE81YMxIn09w70Cj3oSGInMIYgUtCXT41lMxI9k1mnho32jTYjOdElaY3mS6BCioP7_mqNTdF82kqfXdA5SWuHH58kitNPQVdGXWq7/s1600/39854_418494589908_803374908_4443838_345630_n.jpg"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdooqyb_qy2WDQxlKLOjjRp7gM0d97twG1Nei3SYTE81YMxIn09w70Cj3oSGInMIYgUtCXT41lMxI9k1mnho32jTYjOdElaY3mS6BCioP7_mqNTdF82kqfXdA5SWuHH58kitNPQVdGXWq7/s400/39854_418494589908_803374908_4443838_345630_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516591073356940162" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR1CdY1oWXuPE09CbprnEK6PXeSLmFpc6LXwo_KglmvyGcVR1TWtZe6OlG3XEPLCTGNKfXI-zdByGsJVnV3S3Jf-vnyaHw5Iwj8wrWvqlUWkdNmq0mzYG0xOOL4Kk_Ucy48LXC5XSjDxT_/s1600/38018_410050019908_803374908_4233358_726748_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR1CdY1oWXuPE09CbprnEK6PXeSLmFpc6LXwo_KglmvyGcVR1TWtZe6OlG3XEPLCTGNKfXI-zdByGsJVnV3S3Jf-vnyaHw5Iwj8wrWvqlUWkdNmq0mzYG0xOOL4Kk_Ucy48LXC5XSjDxT_/s400/38018_410050019908_803374908_4233358_726748_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516589853046415074" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ5LKh09lZ5eleXiFV_j4sArKgvSuK6p6ZwnpctRUut9EoLn7_3KBoo2hSKUtL1Li1EHb4d8XHNafITrYEFxT3v3pca6tgryC2okgH953MDOYPP4YgBT5D3YXBfGB6Bfcla0-lo2Vctudz/s1600/phillies.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ5LKh09lZ5eleXiFV_j4sArKgvSuK6p6ZwnpctRUut9EoLn7_3KBoo2hSKUtL1Li1EHb4d8XHNafITrYEFxT3v3pca6tgryC2okgH953MDOYPP4YgBT5D3YXBfGB6Bfcla0-lo2Vctudz/s400/phillies.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516589414365225010" /></a><br /><br />But after a while the ng tube was getting harder to insert so we finally got frustrated and brought Henry back to the hospital, where they discovered that he has a stricture making his esophagus as "narrow as a coffee stirrer" . . . <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8kuKDD4W-eyQ2eKB6HEKXZdoHTFymDEQqvYSoCbMV-CtVgj_TK0XcRLaNqtt5SExSQObBAZrRNH2pMAC5bEDEA1eusuCnYzpOv3jSgE3ZhEsh7xQmOd1Kax03fZjgfhsTSJmP_oEVAnhX/s1600/coffee+stirrer.JPG"><img style="cursor:pointer; cursor:hand;width: 240px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8kuKDD4W-eyQ2eKB6HEKXZdoHTFymDEQqvYSoCbMV-CtVgj_TK0XcRLaNqtt5SExSQObBAZrRNH2pMAC5bEDEA1eusuCnYzpOv3jSgE3ZhEsh7xQmOd1Kax03fZjgfhsTSJmP_oEVAnhX/s400/coffee+stirrer.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5516581327427627490" /></a><br /><br />So he had a G tube put in, can't have anything by mouth, and has many procedures coming up to attempt to dilate his esophagus . . .<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfZDqX5hmMTUf4_TWvvpYmHq1MmPACEUY6Bp4kIb_znLcGkgy3UY6PybMtHYwrxQRQRqFGuq7gFOKLSdsPOT0VwgpxdGIAC3kx0gar_WYYhpLICX3rSPCrlhBvsLRcspcgYmJSADLcUyqx/s1600/hospital.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfZDqX5hmMTUf4_TWvvpYmHq1MmPACEUY6Bp4kIb_znLcGkgy3UY6PybMtHYwrxQRQRqFGuq7gFOKLSdsPOT0VwgpxdGIAC3kx0gar_WYYhpLICX3rSPCrlhBvsLRcspcgYmJSADLcUyqx/s400/hospital.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516581922884538962" /></a><br /><br />We celebrated Henry's first birthday in August and let him have a taste of the frosting (shhh) which he liked SO much that he threw a Royal Fit when we took it away . . . <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4MFGeA1goibf8QCHI8UvorBcgQV4nZ8FZV9NFDJ8yEpt6ITlZqLE0H_ahlbQuJdiII4yZUZdoEVx_LZ1cOJ82nGmChTDP_Glcm09qVyYdt7xCOSGFC41FOSplB6G1dfSdbMNwER4vCjHz/s1600/turning+one.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4MFGeA1goibf8QCHI8UvorBcgQV4nZ8FZV9NFDJ8yEpt6ITlZqLE0H_ahlbQuJdiII4yZUZdoEVx_LZ1cOJ82nGmChTDP_Glcm09qVyYdt7xCOSGFC41FOSplB6G1dfSdbMNwER4vCjHz/s400/turning+one.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516582205663171666" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU54sJZJdTpnz1wHCbKXU5PWqTN_J9jW0-lNzrMgYyYPhRbjKRqxrlpN1vKrlMMiRjYI1kw2b1qdG3MxpTQe9GrmHzh4MgE_NT6CN42mn8-IJb7hif8RzrvF9bE_-gzMJg8xdaN0vG08vI/s1600/royal+fit.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU54sJZJdTpnz1wHCbKXU5PWqTN_J9jW0-lNzrMgYyYPhRbjKRqxrlpN1vKrlMMiRjYI1kw2b1qdG3MxpTQe9GrmHzh4MgE_NT6CN42mn8-IJb7hif8RzrvF9bE_-gzMJg8xdaN0vG08vI/s400/royal+fit.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516582207069698210" /></a><br /><br />We're all really tired from such an eventful summer . . .<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpVPy0xviH6O5zXH-9UhogK_1BcGaGA0eAXnGo-mLiwWLmskTmJZ5pKI8nXbbNd45v_l7lBqVRPUFadTmsXAw9XJtjHITYyYgIUrFf9ks24UuAdb05FMFBF-f7zxyGWPn37yU1mWY6yAa2/s1600/tired+king+e.jpg"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpVPy0xviH6O5zXH-9UhogK_1BcGaGA0eAXnGo-mLiwWLmskTmJZ5pKI8nXbbNd45v_l7lBqVRPUFadTmsXAw9XJtjHITYyYgIUrFf9ks24UuAdb05FMFBF-f7zxyGWPn37yU1mWY6yAa2/s400/tired+king+e.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516582512269147170" /></a><br /><br />Thankfully, Mommy got away for a girls weekend . . . <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjANNP4KDVNSx7ZMArvTiiFYCHLXhx1tGAlipV2IbZpgouN1uWBQG8m6QQmCwvrBaLkCj7ai2HfnU9NA1ireGtKIyPt1pT2JHe-9pi06WmJOVd8j08pY3dJxSy3gbw8f44e06hENLBDccMf/s1600/47820_10150239340155411_842080410_14511260_2206287_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjANNP4KDVNSx7ZMArvTiiFYCHLXhx1tGAlipV2IbZpgouN1uWBQG8m6QQmCwvrBaLkCj7ai2HfnU9NA1ireGtKIyPt1pT2JHe-9pi06WmJOVd8j08pY3dJxSy3gbw8f44e06hENLBDccMf/s400/47820_10150239340155411_842080410_14511260_2206287_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516590557341750130" /></a><br /><br />And now school is starting, therapies are in full swing, and we're getting ready for the Buddy Walk in a few weeks (Go Team Oh Henry)!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHoxFahws5tiTq98P8IyOFyq9tONz-0mI88dHnarCHH1xM_G2aoXswos6-2Bmqiyodw9Lg4wAg2tXGvXwj6DarlqsGZ0wP97Ci7Iz7MwQpi5trzLkU_kScLGx0K53Eq1HvT4ywkCwagVq0/s1600/oh+henry.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHoxFahws5tiTq98P8IyOFyq9tONz-0mI88dHnarCHH1xM_G2aoXswos6-2Bmqiyodw9Lg4wAg2tXGvXwj6DarlqsGZ0wP97Ci7Iz7MwQpi5trzLkU_kScLGx0K53Eq1HvT4ywkCwagVq0/s400/oh+henry.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5516582706511896482" /></a><br /><br />And that's what you missed . . .Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com4tag:blogger.com,1999:blog-3000147770533509198.post-18703488168850908882010-07-15T13:26:00.000-07:002010-07-15T13:28:17.308-07:00Home!I have been overwhelmed by the transition and have not had a chance to post, but Henry has been home for two weeks and is doing well! He is using an ng tube for all feedings until we have his next swallow study done on Aug. 3rd. Praying for good news that day, as we would love to move back to the bottle and food soon! <br /><br />I will try to post a longer update soon . . . . Thank you for all of your caring words!Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com8tag:blogger.com,1999:blog-3000147770533509198.post-70236767091839148362010-06-24T08:46:00.000-07:002010-06-24T08:46:34.481-07:00Making the Best of Boring<div class="separator" style="clear: both; text-align: center;"></div><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><span style="font-family: Verdana, sans-serif;">Hi, I'm Henry. I've been in the hospital for four weeks. And I'm bored.</span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMoutnLY9u2vPT6XWiZM-LPk6P1JejH7_eqVJ-jx7zrOy_GcH27Oqq3T9DI-Xhw8gMs9WTnYXc54GZiO0-d2wV48V6570N_IXyjwiv5bZJ1UpaBcajVcMbM4qOheGONPg4HzUmW9wgc4Wm/s1600/bored1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMoutnLY9u2vPT6XWiZM-LPk6P1JejH7_eqVJ-jx7zrOy_GcH27Oqq3T9DI-Xhw8gMs9WTnYXc54GZiO0-d2wV48V6570N_IXyjwiv5bZJ1UpaBcajVcMbM4qOheGONPg4HzUmW9wgc4Wm/s320/bored1.jpg" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="font-family: Verdana, sans-serif;">So while my brothers are at Grammy and Paw Paw's house doing this . . .</span></div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIXENpUb37kXXLUgDKDOLRR1ND3WRrzNJNG25JPjm6F9R3zidWptW5QX7iZFSBN_hDv4rGyORTlH0oEStBZqOeHngnoG-PM62H7bW-6c9UI4Z3IOP0CUY45KZ1r5say6q_75hmqTIZlrWo/s1600/foosball.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIXENpUb37kXXLUgDKDOLRR1ND3WRrzNJNG25JPjm6F9R3zidWptW5QX7iZFSBN_hDv4rGyORTlH0oEStBZqOeHngnoG-PM62H7bW-6c9UI4Z3IOP0CUY45KZ1r5say6q_75hmqTIZlrWo/s320/foosball.jpg" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><span style="font-family: Verdana, sans-serif;">My "big day out" going to the hospital atrium looks like this . . . </span></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixr2Z4sCJwlPx0C-KPYvJ49jEfQpI5OHTEFI3JMOLoRA3XjNntWwTGm0ciQwaIrjlfDlDAZcpSY3RJucoeAXP-fSvq8mGtlOcqSvPTGYi4b6dqJOByPf1KaXuqg_-2-tQLv-ZApoJV-sSN/s1600/bored6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixr2Z4sCJwlPx0C-KPYvJ49jEfQpI5OHTEFI3JMOLoRA3XjNntWwTGm0ciQwaIrjlfDlDAZcpSY3RJucoeAXP-fSvq8mGtlOcqSvPTGYi4b6dqJOByPf1KaXuqg_-2-tQLv-ZApoJV-sSN/s320/bored6.jpg" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="font-family: Verdana, sans-serif;">But I'm making the best of it. I went outside yesterday with Mommy, Daddy and Uncle Matt, and I felt the wind in my hair.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3INIhrSBrP2u3lV-j_y3XOPE4JKFMEL1ZcUeC5QczsAkdoqgYtN55ZfiK7T0R-MQ6u7Mw6b_1I-yFvEMPZJlAINgjy4OYC_74pwg4M-VKVKJ0Q8uRdk3gS-YV_gXotU9WdzOkfgf5Vm9j/s1600/bored2.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3INIhrSBrP2u3lV-j_y3XOPE4JKFMEL1ZcUeC5QczsAkdoqgYtN55ZfiK7T0R-MQ6u7Mw6b_1I-yFvEMPZJlAINgjy4OYC_74pwg4M-VKVKJ0Q8uRdk3gS-YV_gXotU9WdzOkfgf5Vm9j/s320/bored2.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjed0bl4S0rof6Q5I8zmKILA1pKjz6l0fiAbYXIql4y6HDngTfT4YZM_r2Gl6rLLhwOvqztWlLCIvpRwG2WaNmwAphOWk6D17S-6yK3nPB4Fq7Ji8s5h6djw3B-vdkbNOFoohV8v2EEWWWu/s1600/bored3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjed0bl4S0rof6Q5I8zmKILA1pKjz6l0fiAbYXIql4y6HDngTfT4YZM_r2Gl6rLLhwOvqztWlLCIvpRwG2WaNmwAphOWk6D17S-6yK3nPB4Fq7Ji8s5h6djw3B-vdkbNOFoohV8v2EEWWWu/s320/bored3.jpg" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="font-family: Verdana, sans-serif;">I pulled my ng tube out when I got really bored yesterday, and I smiled and laughed. Too bad Mommy and Daddy didn't get a picture of THAT.</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="font-family: Verdana, sans-serif;">So I'm having <strong>some</strong> fun. I even had Music Therapy today!</span></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiANcnlMGYnpGBKQ77CSx15YCSBdF_nKmwFRO6inbCkZKlAaR_Uy5ISCzhcczRa2MPweN8wDDqVGKQcMvIdupFiGohDu3pJ8Bnu9ZWHUQbhc_lyJGQ5Wha9wUypM9h0irhX_tYECg55ut2k/s1600/bored4.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiANcnlMGYnpGBKQ77CSx15YCSBdF_nKmwFRO6inbCkZKlAaR_Uy5ISCzhcczRa2MPweN8wDDqVGKQcMvIdupFiGohDu3pJ8Bnu9ZWHUQbhc_lyJGQ5Wha9wUypM9h0irhX_tYECg55ut2k/s320/bored4.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVc5wM6oCS7ULw8M5BdCMk0lG_Fnn_WK0Ose0Do0RX2KHhSKy7dLo6Mh-bN5f6U6m7KFBncFj4F-CH8xMI3tg3Qj2Ile4k42MJKTnI7HK32kmuJCmcXllr5ubnF4mu4v1PEWtk5aI3xran/s1600/bored5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ru="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVc5wM6oCS7ULw8M5BdCMk0lG_Fnn_WK0Ose0Do0RX2KHhSKy7dLo6Mh-bN5f6U6m7KFBncFj4F-CH8xMI3tg3Qj2Ile4k42MJKTnI7HK32kmuJCmcXllr5ubnF4mu4v1PEWtk5aI3xran/s320/bored5.jpg" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><span style="font-family: Verdana, sans-serif;">They keep saying I will get to go home soon. I hear it won't be today, but I'm sure I'll find something to do while I wait!</span></div>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com11tag:blogger.com,1999:blog-3000147770533509198.post-63930473701457923452010-06-21T15:27:00.000-07:002010-06-21T15:27:32.651-07:00SetbacksWe thought today would be the day, but we're not home yet. And it sure looks like we won't be until the end of the week. Henry has had some setbacks over the weekend, including low grade fevers, the recurrence of a slight rash, a big bout of vomiting and several days of . . . hmm, I keep trying to think of the most blog-friendly way to say "diarrhea," but there doesn't seem to be one. Feel free to leave suggestions in the comment box. ;)<br />
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The vomiting/rash combo gave me flashbacks about Day One, and I had a hard time holding it together when the resident said, "But he looks fine right now!" Some day I'm sure I'll blog all about the frustrations of our first week here, but the theme of the week was, "He's fine, Mom! It's just a virus! He'll turn around by tomorrow! You'll see!" That is, until Day Six when he was moved to the PICU. I know it's unlikely that the cycle would repeat, but after what we have been through, it was hard not to let anxiety get the best of me. The good news is that the vomiting, rash and fever are gone. Which leaves us with the . . . watery stools? At first, we suspected that it was caused by the thickener we were adding to his formula (a necessity because he has been choking on thin liquids, probably as a result of being intubated for so long). We tried some cereal as a replacement thickener, which seemed to cause or at least exacerbate the vomiting. So we discontinued both thickeners and gave him a break from the bottle yesterday. <br />
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In the meantime, he was scheduled for a modified barium swallow/videofluoroscopy this morning, which showed exactly where the liquid goes when he takes a bottle. They offered him several different thicknesses to see if he could safely drink any of them. Unfortunately, Henry aspirated every one, which<strong> </strong>means that he will be <strong>off the bottle for 6 - 8 weeks.</strong> I knew we would probably come home with the ng tube, but I never imagined we would have to go so long without offering him <strong>anything </strong>by mouth! After that, he will need to have another swallow study to see if there has been any improvement. If not, we wait again and try again, putting several weeks in between each swallow study to avoid overexposure to radiation. Good times.<br />
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Trust me, I know I should just be thankful he is here. I am grateful for the miraculous recovery he is making. But this setback was hard to swallow. No pun intended actually, but it seems a fitting end to this post.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com5tag:blogger.com,1999:blog-3000147770533509198.post-2606999644381515272010-06-19T19:15:00.000-07:002010-06-19T20:02:09.846-07:00Feelin' the Love<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">All three kings had some fun today. . . William and Edmund monkeyed around with Daddy and Uncle Matt:</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><img border="0" height="320" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_26bNU2-OEPeHl4S-B9ZIv0CT76VamoGj1wUWwGDtfCG7F0P86qeK1rICkSLvW8pGH-RYKVjhIMu3aQ2ZhQbGCg4hLgS30fOs37vB-Q25x9YIKDAe-7uMlOKO1jn07a831hNEwAqr9lI0/s320/monkey3.jpg" width="240" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBS_FN_ODAs_qNfUErB1G6zBkc2HI0oRYCk3a23cXuq2mkDvHjUxCg92hyphenhyphenrNPBM7QQ-v0cSmW_z-hf-G-G9CzJtl9j5ZHNQlYbqd875nqqJIpxcBp_aFsUmgauKcYHVI9xxb-YTf5MYDEI/s1600/monkey1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBS_FN_ODAs_qNfUErB1G6zBkc2HI0oRYCk3a23cXuq2mkDvHjUxCg92hyphenhyphenrNPBM7QQ-v0cSmW_z-hf-G-G9CzJtl9j5ZHNQlYbqd875nqqJIpxcBp_aFsUmgauKcYHVI9xxb-YTf5MYDEI/s320/monkey1.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijYZqa7NoXVudIFrO9PMzDx2yIAWuhyxjnvgEwn5OTnuHyU7QTurx_e_MQUXQRAgKI9eWC7inaU4xmWompntOeYgZmcCkIzJds9jehf1z_zj8h8bdS0hloUtJhzfk3tTxqXeHms-3qZYk-/s1600/monkey2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijYZqa7NoXVudIFrO9PMzDx2yIAWuhyxjnvgEwn5OTnuHyU7QTurx_e_MQUXQRAgKI9eWC7inaU4xmWompntOeYgZmcCkIzJds9jehf1z_zj8h8bdS0hloUtJhzfk3tTxqXeHms-3qZYk-/s320/monkey2.jpg" width="240" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">. . . and we took them to see the Karate Kid.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Meanwhile, Henry had Grammy and Paw Paw (my parents) all to himself. They are heading home tomorrow and will be missed so much. I don't know what we would have done without them . . . they are a huge source of strength and support. Here's Henry giving them some thank you hugs and kissies:</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoOwU5RmY6gpvs8WaIy1x9UVTeHFoj8CsXz7684ie72xACit8ZAG9eJsA_hAHwPlm6FbIjtUni9cCwrLIcgvpd2t1sarsa4JWfxnKuJczyhasvsDvQBS2SkJPm9X5169P32FFEWYSsRX4C/s1600/grampaw1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoOwU5RmY6gpvs8WaIy1x9UVTeHFoj8CsXz7684ie72xACit8ZAG9eJsA_hAHwPlm6FbIjtUni9cCwrLIcgvpd2t1sarsa4JWfxnKuJczyhasvsDvQBS2SkJPm9X5169P32FFEWYSsRX4C/s200/grampaw1.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsSfM8k2BnH6HNsBTB2AToEdLZy07U8x6N1PxujQttGCcYShuV3u6l2jx4gpUzc_RwymVWPkCuSaRc0NO984XDg55KsADMW5MCqM1Wy8jssfNm61TSDFxwaiAApyZ8gkxq68hqR34oia9w/s1600/grampaw2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsSfM8k2BnH6HNsBTB2AToEdLZy07U8x6N1PxujQttGCcYShuV3u6l2jx4gpUzc_RwymVWPkCuSaRc0NO984XDg55KsADMW5MCqM1Wy8jssfNm61TSDFxwaiAApyZ8gkxq68hqR34oia9w/s200/grampaw2.jpg" width="200" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">We have been blessed beyond measure by the love and support of family and friends. From the local visitors bringing immediate needs like phone chargers, clean clothes, an extra car . . . to those offering coffee and "please-come-now-on-call-friend-therapy" . . . to the visitors from afar (Louisiana, California, Ohio) . . . we have felt so loved and cared for. THANK YOU for the meals, the babysitting, the cards and gifts, the packages for our big boys . . . all of these things - the many ways you are filling needs before we even have time to realize them - have been such an encouragement to us. I'm so thankful for the connection to people online as we continue to spend lonely nights here in the hospital. Above all, thank you for your prayers. We do believe that God has heard the cries of His people asking to heal Henry. Of course there is no way to actually measure prayer, but I have a sense that this effort was enormous. I do believe all continents are accounted for save Antarctica (please, Antarcticans, correct me if I'm wrong). And this vision of people in all parts of the world collectively sending up pleas for our boy . . . it brings me to tears. We love him so much. He is a gift and a miracle.</div>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com5tag:blogger.com,1999:blog-3000147770533509198.post-3642260501804622642010-06-18T07:27:00.000-07:002010-06-18T07:29:25.035-07:00Weaning<div class="separator" style="clear: both; text-align: left;">So . . . when is he coming home? This is the question on everyone's minds. For the past two days, there has been talk of sending him over to an inpatient rehabilitation program. We had mixed feelings about that idea, because it includes at least 3 hours a day of intensive therapy. For certain, Henry is not back to where he was, and it may be a long road to regain some of the skills he already had. But he tires so easily that it seems excessive for him. Still, I was willing to give it a try if it meant that we would still be able to have all the resources of a hospital surrounding him. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">Until last night, they were weaning him off of his oxygen. Two nights ago, he only needed a small amount for about an hour. Last night, he never needed it!!</div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">He is also weaning off of his pain medications. This is something we can do at home, but I have felt more comfortable being here for it since he has shown signs of withdrawal and they have made changes to the dose accordingly. </div><div class="separator" style="clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: left;">He is also learning how to use the bottle again. Yesterday, he took three 2 oz bottles over the course of a day! His ng tube may be in for a while, and we have been told to prepare ourselves to bring him home with his tube. We would be trained to use the pump and reinsert the tube if needed (he's getting the hang of hooking the small, untaped part of the tube with his finger and trying to pull it out). Again, I know we can do it, but we've had one nurse insert his ng tube into his lung - fortunately an x-ray showed the error before it became a problem. Without an x-ray, I'm not sure I'd feel comfortable doing it myself!</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhke5fgtXuXb1tI-0mTmG9TF_mhsuEmFutp_eQB6glWnKEpJmuCJ9v9AfDLnTfBTCoXwAbIlUqxn71OJOWE9W72uU9W38xweBXaAxZh7zD6diA8QbSC-3rbOZBcr6D87bzGWdMVaiMQ9_7f/s1600/hen1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhke5fgtXuXb1tI-0mTmG9TF_mhsuEmFutp_eQB6glWnKEpJmuCJ9v9AfDLnTfBTCoXwAbIlUqxn71OJOWE9W72uU9W38xweBXaAxZh7zD6diA8QbSC-3rbOZBcr6D87bzGWdMVaiMQ9_7f/s320/hen1.jpg" /></a><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTYESALHjA6ftSWu0C_evEKk7C5aV8i5ZUHT54k1E9e3EvLa_KJeVmPmONGJBtURQn77AhhMYzObri2XNBFhGWpdifCNa3hsXwOoaUKuQW5bQk_IlS_YMojZOmtk2HGbGj3Yn-uF7Cy4bX/s320/hen2.jpg" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimbo6jw0XbqPORBJbc7Tanom80hZpYitX4kTUM84B8RfjCpvYMQp8Wsd7l33RBLcINJuMnPm-J-tWEOXnac2uL4X2Qy92eb_euAN_9QBehQFyOz3ePSMlT3wZgXYsm5ApF35ruQ9s0jmNE/s1600/hen3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimbo6jw0XbqPORBJbc7Tanom80hZpYitX4kTUM84B8RfjCpvYMQp8Wsd7l33RBLcINJuMnPm-J-tWEOXnac2uL4X2Qy92eb_euAN_9QBehQFyOz3ePSMlT3wZgXYsm5ApF35ruQ9s0jmNE/s320/hen3.jpg" /></a></div><br />
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Today, they have determined that the inpatient rehab program is not the best fit for him. Their best guess is that he will be here through the weekend and possibly be discharged on Monday. Henry is probably ready to leave the confines of the hospital . . . It's MOMMY who needs to be weaned!Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com7tag:blogger.com,1999:blog-3000147770533509198.post-60927605564031470962010-06-17T09:17:00.000-07:002010-06-17T09:17:44.743-07:00Smiles!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdvvFRlu8a26R2LGEuOn4j5uuRwNmB-4k2SW-UlHBfv7eEG4Byr4Xpa-ck4jer8_Ssc38mG6zvnVpXuokXjkif1On3h3RwAXt-nCv_ZwsVV2kEFeVYBjzUxgCQqgVtiWh39qWlRpkiNvHL/s1600/smile2.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdvvFRlu8a26R2LGEuOn4j5uuRwNmB-4k2SW-UlHBfv7eEG4Byr4Xpa-ck4jer8_Ssc38mG6zvnVpXuokXjkif1On3h3RwAXt-nCv_ZwsVV2kEFeVYBjzUxgCQqgVtiWh39qWlRpkiNvHL/s400/smile2.jpg" width="300" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-W4nNt8IUtX6141xE-rZ-0wk34EQu2v02sxlF3VIsCeyydw0gynZnXy3pyLVGW93LiNMfG62IHhaDh69pFL1C1D6LMXVABNmVd4_Sx1OPBolZJi6TllBtgMW2xNqigmgeF8Xi0v7PqWCD/s1600/smile1.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" qu="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-W4nNt8IUtX6141xE-rZ-0wk34EQu2v02sxlF3VIsCeyydw0gynZnXy3pyLVGW93LiNMfG62IHhaDh69pFL1C1D6LMXVABNmVd4_Sx1OPBolZJi6TllBtgMW2xNqigmgeF8Xi0v7PqWCD/s320/smile1.jpg" /></a></div><br />
<span style="font-family: Verdana, sans-serif;">Look at my happy boy at 1 am! He sure knows how to cheer up a sleepy Mommy.</span>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com7tag:blogger.com,1999:blog-3000147770533509198.post-52293373540846837092010-06-14T18:26:00.000-07:002010-06-14T19:15:48.799-07:00What Happened?We'll always wonder what happened. How did he get so sick? <span class="Apple-style-span" style="font-weight: bold;">What made Henry go from this:</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ98Q_9OEDEtnjwO3X0vPLm5lgZKnoRIfC5iKVwKvzYryEh7aGVIUloJb-MTsvaBXIS2BkahcnIu4cslQ9txioBY9OkJhGTIgzZSEwhcgsSrJ5J1Y38QScp7R16YftfxnqenxuSBue2irl/s1600/29195_395496689908_803374908_3871784_6983062_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ98Q_9OEDEtnjwO3X0vPLm5lgZKnoRIfC5iKVwKvzYryEh7aGVIUloJb-MTsvaBXIS2BkahcnIu4cslQ9txioBY9OkJhGTIgzZSEwhcgsSrJ5J1Y38QScp7R16YftfxnqenxuSBue2irl/s320/29195_395496689908_803374908_3871784_6983062_n.jpg" /></a></div><br />
<span class="Apple-style-span" style="font-weight: bold;">to this</span> (this is only Day 4 -- I'm sparing you the worst photos because I can't bear to put them online):<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7ssy7wVzs7r-9tywuHSk3iBm62JOQdW5h82rbSzqKS95qwklI2_69z-vHLF8mz7DUaJQImGJNzD_POmG-ynG5RP5QNfO9Ee3DiS4Pr4A71akYMQCbEytXnhISXoxDjWV4Ej-EWzH580n4/s1600/photo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7ssy7wVzs7r-9tywuHSk3iBm62JOQdW5h82rbSzqKS95qwklI2_69z-vHLF8mz7DUaJQImGJNzD_POmG-ynG5RP5QNfO9Ee3DiS4Pr4A71akYMQCbEytXnhISXoxDjWV4Ej-EWzH580n4/s320/photo.jpg" /></a></div><br />
<br />
<span class="Apple-style-span" style="font-weight: bold;">in such a short period of time?</span><br />
<br />
No one knows. Here we are at one of the top hospitals in the country, but no matter how amazing the doctors are, they are the first to admit that they don't have all the answers. And Henry's case has been called a "head scratcher" by numerous physicians. Those are not the words any parent wants to hear. . . we would like a clear diagnosis and plan of treatment, of course. But all they can do is put their heads together and give us their best guess. <br />
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From the beginning, they have said, "This is probably viral," but the only virus to test positive was rhinovirus. On Day 5, due to his rash and persistent fever, they began to consider Kawasaki Disease, which is not viral. It also does not have a definitive test, which makes it very difficult to diagnose. Instead, it's a constellation of symptoms that fit together and point towards the condition. Henry has had several of the symptoms of Kawasaki, but not all of them (and some of the most obvious symptoms were missing). His blood work, for the most part, has not pointed to Kawasaki (but in some ways it has, adding to the confusion). It was explained to me on Day 5 that they needed to determine whether this was Kawasaki before Day 10, for after Day 10 a multitude of effects could occur (affecting his heart, liver and other vital organs). There is a treatment for Kawasaki that can be highly effective if given before Day 10. <br />
<br />
By Day 6, most of the doctors believed this was not Kawasaki and decided not to treat him for that. Also on Day 6, his chest x-ray showed pneumonia, his breathing became even more labored, he was showing signs of sepsis and he was admitted to the PICU in the middle of the night. Diagnosis needed to take a back seat to maintaining and saving his life. And they did, praise God.<br />
<br />
<span class="Apple-style-span" style="font-weight: bold;">However, diagnosis became important again when Henry went from this (much better):</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs3gnDaS9GZYoQVT3opV5cLRbON8xha5_Bt4GTsCN5HFKBmmy_Jx_KE40w3RF7efZRTsFc2jW4fpjXT-SUP2tTb65lmiAHGzw3ggknvBH0LAddGU95ElxUfvq4PMhrglD0xlbC5yXjEeh7/s1600/IMG_1457.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs3gnDaS9GZYoQVT3opV5cLRbON8xha5_Bt4GTsCN5HFKBmmy_Jx_KE40w3RF7efZRTsFc2jW4fpjXT-SUP2tTb65lmiAHGzw3ggknvBH0LAddGU95ElxUfvq4PMhrglD0xlbC5yXjEeh7/s320/IMG_1457.JPG" /></a><br />
<br />
<br />
<span class="Apple-style-span" style="font-weight: bold;">back to this:</span><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOiw4KjMJGGHZrYNubTLsf_36WwNizuyF1OZTgOdL77H7UIXEw39DXDkC5iK0FCxGPX8HotWFbGOl0yy9joIhUVubZlF4kFGs_GLJCuyxFofI8uFPJmKLdDAyILCvUipmcWGGQnyTQ0rud/s1600/IMG_1463.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOiw4KjMJGGHZrYNubTLsf_36WwNizuyF1OZTgOdL77H7UIXEw39DXDkC5iK0FCxGPX8HotWFbGOl0yy9joIhUVubZlF4kFGs_GLJCuyxFofI8uFPJmKLdDAyILCvUipmcWGGQnyTQ0rud/s320/IMG_1463.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1oOZuNO9QNZgZNMsI1q5c8V5JaxGYk6LC8sLf-Z9oLjEkv74UK82A7IjU8cmwGXipw20iCb8dQ12RD7DaWAPw4Zf1T7T-Nls1fgMYaOd5d0yA_7RA6jcOyyAn1hLM8sEKUULQJqsYvdd_/s1600/photo-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1oOZuNO9QNZgZNMsI1q5c8V5JaxGYk6LC8sLf-Z9oLjEkv74UK82A7IjU8cmwGXipw20iCb8dQ12RD7DaWAPw4Zf1T7T-Nls1fgMYaOd5d0yA_7RA6jcOyyAn1hLM8sEKUULQJqsYvdd_/s320/photo-2.jpg" /></a><br />
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<br />
<span class="Apple-style-span" style="font-weight: bold;">in just 12 hours.</span> The rash <span class="Apple-style-span" style="font-weight: bold;">came back</span> and we started to feel like we had backtracked to Day 3 all over again. It was so hard not to begin to lose hope. We couldn't bear to walk down that road again. Not when we had just gotten him back. And worst of all, doctors began revisiting Kawasaki. Now. On Day 17. A full week after treatment would have been effective in preventing serious heart problems (like coronary artery aneurysms), liver problems, etc. To say the least, we were scared. And angry. Teams of doctors from Dermatology, Infectious Disease and Cardiology were called in to look at him yesterday, and for the FIRST time, they all wanted to see the photos I have been taking every day (which show the progression of the rash). And of course, there was no consensus. Dermatology said it's probably Kawasaki. Infectious Disease said they'd bet not. Cardiology said definitely not. We didn't know whether to be relieved that most of them thought it wasn't Kawasaki or just frustrated that NO ONE KNOWS. At that point, we asked for an echocardiogram. They didn't feel the echo was necessary after determining that it's "probably not Kawasaki," but in my opinion, why WOULDN'T we do one, just to be sure that there were no ill effects on his heart? We needed to know, if for no other reason than to put OUR hearts to rest. And it did. His echo was clear. And we are thankful.<br />
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And yes, still frustrated. We don't know why his rash returned on Saturday (perhaps it was a reaction to meds, perhaps it had been blocked by steroids for a few days and returned, perhaps . . . perhaps . . . ). But we are coming to accept the fact that their "best guess" is all we will ever have. At this point, they seem to be sticking to the diagnosis of rhinovirus with a secondary superinfection of Staph Aurea. They have seen cases of Staph Aurea which, oddly enough, mimic the rash of Kawasaki Disease. This, in the end, sounds like the most reasonable explanation. The rash appears to be slowly disappearing and I'm happy to report that Henry now looks like this:<br />
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<span class="Apple-style-span" style="font-weight: bold;">Regardless of the diagnosis, Henry is HEALING. And that, of course, is the most important news of all. </span>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com12tag:blogger.com,1999:blog-3000147770533509198.post-64636383313034159802010-06-11T16:45:00.000-07:002010-06-11T16:52:35.379-07:00Leaps and Bounds<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsvohpQy2MZfk3lmTMmCqfk7MUZzcoqtUuVCPEKMa8nA1t5ejTI14ehsJ_t8aXIq5VKg_Ne9DLgXxzkwe5FTBQ9CS37beRpn5wroMz5GKNVSr2LtWm6hwSwzVjqe3XnAnKAHAlMjAcHux9/s1600/32245_400007559908_803374908_3987971_4305677_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsvohpQy2MZfk3lmTMmCqfk7MUZzcoqtUuVCPEKMa8nA1t5ejTI14ehsJ_t8aXIq5VKg_Ne9DLgXxzkwe5FTBQ9CS37beRpn5wroMz5GKNVSr2LtWm6hwSwzVjqe3XnAnKAHAlMjAcHux9/s320/32245_400007559908_803374908_3987971_4305677_n.jpg" /></a></div><div style="text-align: auto;"><span class="Apple-style-span" style="font-family: '-webkit-monospace'; font-size: 12px; line-height: 15px; white-space: pre-wrap;"><br />
</span></div><div style="text-align: auto;"><span class="Apple-style-span" style="font-family: '-webkit-monospace'; font-size: 12px; line-height: 15px; white-space: pre-wrap;">William was able to visit yesterday! He is our sensitive soul who has an extra special love for his baby brother. He asked me a few days ago if Henry was going to die. At that time, I didn't have an answer for him. He knows enough about Sydney to know that we have had such a loss before and that babies can die. Perhaps this contributed to the immense anxiety he has experienced in the past two weeks. I was so thankful that Henry was well enough yesterday (and looked like himself enough) for William to see him and know that he is getting better.</span></div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVM-4OIOucSqEo1TfEWQLGvZysb5AJKL1YS-KhHO49SINfp3sTaIclCrh9PWOyZ0B_ZpvVCmw6CsTRDFWlNCannR7LSiJ27eziHu7o7gr6FeRdnTpBbngHNA4otgtU4nf5-EKbUQe-UCF4/s1600/32245_400006294908_803374908_3987944_4060756_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVM-4OIOucSqEo1TfEWQLGvZysb5AJKL1YS-KhHO49SINfp3sTaIclCrh9PWOyZ0B_ZpvVCmw6CsTRDFWlNCannR7LSiJ27eziHu7o7gr6FeRdnTpBbngHNA4otgtU4nf5-EKbUQe-UCF4/s320/32245_400006294908_803374908_3987944_4060756_n.jpg" /></a></div><span class="Apple-style-span" style="font-family: '-webkit-monospace'; font-size: 12px; line-height: 15px; white-space: pre-wrap;"> </span><br />
<span class="Apple-style-span" style="font-family: '-webkit-monospace'; font-size: 12px; line-height: 15px; white-space: pre-wrap;"><span class="Apple-style-span" style="font-family: Times; font-size: 16px; line-height: normal; white-space: normal;"></span></span><br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: '-webkit-monospace'; font-size: 12px; line-height: 15px; white-space: pre-wrap;"><span class="Apple-style-span" style="font-weight: bold;">The big news is that Henry came off the ventilator today!</span> I can hardly believe it. Just one week ago, we were bracing ourselves for the worst. The ugly words were "pneumonia, sepsis, very sick baby, can't promise you anything, very very ill." Today we are hearing new words like "fabulous, amazing, improvement, good numbers, extubate." I can't even begin to describe our emotions and thankfulness. <span class="Apple-style-span" style="font-weight: bold;">Last week we prayed for a miracle. Today I finally believe we have witnessed one.</span></span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: '-webkit-monospace'; font-size: 12px; line-height: 15px; white-space: pre-wrap;"><br />
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</span></div><div><span class="Apple-style-span" style="font-family: 'Lucida Grande'; font-size: 11px;"><span class="Apple-style-span" style="font-weight: bold;">Henry's fight isn't over, but we do believe that he is winning!! Please keep praying for him and join us in thanking God for the huge steps he has taken this week.</span></span></div><div><span class="Apple-style-span" style="font-family: 'Lucida Grande'; font-size: 11px;"><br />
</span></div>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com10tag:blogger.com,1999:blog-3000147770533509198.post-52439387606528493672010-06-09T04:37:00.000-07:002010-06-09T04:37:47.049-07:00Not MeI open my eyes to darkness and my confusion is replaced by a reluctant awareness of where I am. The Connelly Center. Room 4. Far removed from the bustling noises and lights of the hospital. A separate, silent wing behind double doors which lead to a large, dark sitting room full of sofas. Beyond that is a locked door leading to the five private rooms given to those of us who would otherwise not sleep for days or weeks on end.<br />
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It's so quiet that I couldn't handle it last week and chose to go back to the comforting beeps and ventilator breaths of Henry's room. When Scott arrived from Bolivia, I was finally able to rest here. Now we take turns, night after night, so that one of us can sleep without interruption.<br />
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Tonight is my turn. But it's 2 am as the phone rings down the hall and I'm suddenly wide awake. I think of the other four and my breath catches as I realize that no one is answering and it might be for me. Perhaps all of us are hearing what I hear in my head: "Not me, not me, not me . . . ." There are no voices as the phone stops ringing, but a door opens at the end of the hallway and I wonder if it's the guard who mans this wing, coming to rouse one of us. "Not me, not me, not me . . . " I hear a soft knock, but not on my door.<br />
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(Written at 3 am because I couldn't sleep)<br />
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Does it sound too dramatic? It was. <br />
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This place . . . we have seen scenes here I wish I had never seen. I was able to block them out the first week . . . the other families who are going through their own worst days too. But this week, I see them. The couple standing outside the ER screaming and placing blame on each other. The young boy with no hair being wheeled into the hospital, recognizing where he is, becoming hysterical and terrified as his parents try to talk him into letting them make the pain go away. The mother sobbing in the waiting area of the PICU as her own mother tries to comfort her. I saw that woman and I've been that woman.<br />
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I will not miss this place.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com12tag:blogger.com,1999:blog-3000147770533509198.post-51044630894231645532010-06-08T16:30:00.000-07:002010-06-08T16:30:03.994-07:00Big Step and Baby StepsYesterday was a bigger day than usual. After I posted the "Day 12" blog, the doctors came for rounds and decided to switch Henry back to the ventilator after all. We were surprised, but have gained such a confidence in the Attending Physician that we felt fine about the decision. And it was a good one! Henry was switched back to the vent yesterday morning and was able to come off the paralytic medication at the same time. We hadn't realized we would see him wake up from his medical "slumber" yesterday, so it was really exciting when he began to open his eyes and realize we were there. He focused on each of us and even started to try to cry when he made eye contact (it was SO heartbreaking . . . especially as he struggled with the ventilator while crying . . . because we can't pick him up to comfort him). <br />
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He has been alert for long intervals since then, and it has been a joy to catch a glimpse of our Henry behind all the wires, tubes and swelling. He is losing some of the swelling, especially in his face, but his body has a long way to go. He weighs an extra 3 kilos right now, which is over 30% of his body weight. The lasix is helping him lose the edema, but it's not a quick process.<br />
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We were on a bit of a high yesterday as such a BIG step was taken, and I have to admit I've hit a low today. It felt like the pace was picking up and giving us hope yesterday, which all came to a screeching halt as not much has changed today, but I do remind myself that no news is still good news at this stage. We're back to baby steps today, but we are so thankful that they are in the right direction.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com2tag:blogger.com,1999:blog-3000147770533509198.post-58925005119671141982010-06-07T05:42:00.001-07:002010-06-07T10:06:16.063-07:00Day 12Henry had another uneventful night for the most part. Yesterday morning, the doctors were hopeful that we would be able to transition him back to the ventilator (from the oscillator), but he had some negative reactions to being suctioned and didn't recover fully (yet) for them to make the move. It makes me laugh a little . . . Last week when we were here and Henry was awake and feisty, they would try to suction his nose and he would arch back and put up quite a fight. It always took at least two people to hold him down. I took it as a great sign of the fight inside my usually mild-mannered little man! As much as I wanted to see him transition in a step towards breathing on his own last night, I LOVE the evidence that he still hates suctioning and has that fighting streak in him (even when he is fully sedated and paralyzed by meds). We just need to convince him that it's for his own good I guess. ;) I'm also happy that a slight change in his numbers put the plan on pause. The nurses and doctors are quick to react and are so careful to understand what caused a change and how to even things out again. It's amazing. The nurses work so hard, which helps us to rest when we can. <br /><br />Scott and I are taking turns sleeping in a special parent sleep room the hospital provides. There are only five of these rooms and they are given to parents of the most critically ill patients. While I am grateful for the quiet dark space and bed, I get a pit in my stomach when I consider how big this hospital is and yet we are always given a key.<br /><br />We continue to be amazed by the generous ways people are reaching out to us to help with meals, play dates for our big boys, and other needs. We can feel the prayers surrounding us and are in awe when people who don't even know us tell us they are fasting and praying for our boy. We definitely do not feel alone.<br /><br />Our big boys are on our minds a lot. We were able to visit them at home last night for a while and give them their baths and put them to bed. It was wonderful to spend time with them, but being in my house with evidence of Henry in every room was almost unbearable. His pack and play, high chair, and toys made me long for our normal life back. Some of you have mentioned my post from January (<a href="http://threelittlekings.blogspot.com/2010/01/boring-in-good-way.html">Boring, In a Good Way</a>) and how striking it is that we are in such a different place.<br /><br />Many people have asked if Henry's Down Syndrome has contributed to this situation in any way. It's a great question and not one that doctors have been able to answer. Last week, before he was in the PICU, I asked it many times and the doctors there brushed it off (as they brushed off many concerns) and simply said no. But his PICU doctors seem to think that it has contributed to the extremity of his reaction. The doctor who is the "main boss" (according to others here) is a man of great knowledge and experience, and he told me he has seen many other kids with T21 who have had serious reactions to common viruses. He believes this is probably the case for Henry. Surprisingly, they have tested for numerous viruses and only one has been positive: rhinovirus. Sound familiar? It's the common cold. They have not ruled out that there may be another virus on top of that, but nothing else has shown itself in the blood tests, and the PICU doctors have said that some kids actually just have horrible reactions to certain strains of rhinovirus. They told me they had many kids this winter who had colds and ended up in the PICU with life-threatening pneumonia, and that some of those kids had Down Syndrome.<br /><br />We are waiting for the doctors to do their rounds this morning. They usually start with Henry, so they should be here soon. We are thankful to be asked to stand in on rounds and participate. <br /><br />To leave off on a positive note, one of the residents who has been involved with Henry's care from Day 4 until now had the weekend off. She walked in this morning to check on him as soon as she arrived and said, "Wow, he is doing great compared to where we were on Friday." I have to hold on to that and hope that this trajectory will continue.<br /><br />Thank you for all of your prayers and the many ways you are helping us.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com9tag:blogger.com,1999:blog-3000147770533509198.post-77737857165088908942010-06-06T05:07:00.003-07:002010-06-06T05:23:37.325-07:00Day 11Henry had a good night last night. I am beginning to feel like I need to come up with a new way to say that. I don't want to mislead anyone with the word "good." It's so very relative. Our new definition of "good" is that nothing scary happened last night. He doesn't appear to be declining. He is stable and showing very small improvements. <br /><br />A clear picture of Henry is that he is on an oscillator, which has taken over the job of breathing for him so that his body can rest while it fights off the numerous infections which are threatening his life. He is heavily sedated and often needs additional medicine to be paralyzed because sometimes he starts to move around a bit and they have noticed changes in his vitals when this happens. We really need for him to just rest peacefully as the many treatments (antibiotics, blood transfusions, platelets, etc) do their work. <br /><br />Our sweet boy does not look like himself right now. His whole body is swollen from the medications, and while they can give him (and have given) some lasix for this, it's a delicate balance and they have to watch his blood pressure, heart rate, oxygen saturation, ventilation, etc. One affects the other, which affects the other and so on. Sort of like "If You Give a Pig a Pancake," but not nearly as much fun.<br /><br />The diagnosis of what caused all this (a virus is suspected but not confirmed) is still a mystery and may always be. Last week, diagnosis seemed important. Now, as I watch my baby fight for his life, I don't care what the initial cause may have been. I'm sure I'll care again later, but for now I just want my Henry back.<br /><br />Scott and I feel so loved and truly appreciate all of the prayers and concern from our dear friends and family and what feels like thousands of others who are lifting us up.<br /><br />Prayer Requests:<br />* Continued improvement. We are taking baby steps, but they are in the right direction. <br />* Our older boys, who haven't seen us much and are also very worried about the brother they adore.<br />* Strength and endurance for us and for my mom who is watching the kids so much of the time while she is dealing with the emotional toll as well.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com10tag:blogger.com,1999:blog-3000147770533509198.post-56350743468938320282010-06-05T09:04:00.001-07:002010-06-05T09:23:11.983-07:00Please Pray for our Boy<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-u_iRetWyPqewv9X760IDNgW89cXz5TkK5AzdT66RtnIeOn6U1y5-Nz35tvMbXcwgCyOpjBa9EQTcmetyZejjHRt7eU7f7rVXpofypRo84_Q3_WYKFcy_qa_bk4mQOToCDCHHdwC6rceV/s1600/henry2.jpg"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-u_iRetWyPqewv9X760IDNgW89cXz5TkK5AzdT66RtnIeOn6U1y5-Nz35tvMbXcwgCyOpjBa9EQTcmetyZejjHRt7eU7f7rVXpofypRo84_Q3_WYKFcy_qa_bk4mQOToCDCHHdwC6rceV/s400/henry2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5479321316671155106" /></a><br /><br /><br />I am sending out an urgent request for everyone who still checks this blog to PLEASE PRAY FOR HENRY! He was admitted to the hospital 9 days ago for symptoms of dehydration due to vomiting. Fever and a rash persisted and worsened over the course of a week. By day six, Henry was fighting for his life. He is in the PICU and continues to fight. There is a raging infection in his lungs and his blood, in addition to a staph infection in his trachea. Henry is only 9 months old. He is the joy of our lives. His brothers adore him. We are devastated at the thought of losing our precious boy. PLEASE PRAY! Last night, Henry showed some small improvements. We are clinging to hope that this might mean that he is on the road to recovery, but the doctors are being very cautious and have reminded us often that he is not out of the woods.<br /><br />I will try to update here if people seem to be reading the blog. <br /><br />The photo above was taken about 24 hours before we ended up in the ER.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com10tag:blogger.com,1999:blog-3000147770533509198.post-57307150512504361042010-02-06T12:19:00.000-08:002010-02-06T12:21:33.029-08:00New MamaPlease, please go read this beautifully written (and photographed) blog about a new Mom of a child with Down Syndrome:<br /><br /><a href="http://enjoyingthesmallthings.blogspot.com/2010/01/nella-cordelia-birth-story.html">http://enjoyingthesmallthings.blogspot.com/2010/01/nella-cordelia-birth-story.html</a>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com1tag:blogger.com,1999:blog-3000147770533509198.post-44316271464668224452010-01-29T12:47:00.000-08:002010-01-29T13:38:38.889-08:00Touring EuropeSurprise! I finally have something to say today because this week has been a bit overwhelming. <br /><br />Another mom from the online Down syndrome community posted a status on Facebook this afternoon saying she wished she could leave "Holland" for a few days. The Holland reference is a common one in DS circles because of <a href="http://www.our-kids.org/Archives/Holland.html">a poem by Emily Perl Kingsley</a> which compares the journey of parenting a child with disabilities to a trip to Holland (when you were expecting to be in Italy).<br /><br />I haven't felt like Henry's Down syndrome has been a source of stress for us, and admittedly we are some of the lucky ones. So far, he is in excellent health with no heart problems, vision, hearing or gastrointestinal issues. He is meeting most of his milestones and is by far the easiest baby I've had. But this week, I can definitely understand this other mom's sentiment that Holland can be a bit too much sometimes!<br /><br />It's not just Holland -- I'm juggling too much. People ask me how I do it all (working from home, going to job interviews, and trying to keep my kids happy and healthy while caring for our home, bills, meals and mounds of laundry) and I often fear that I just don't do it all WELL. I know I'm in good company -- most of you moms out there can relate to all of this, right?<br /><br />Despite my background and experience as a Special Ed teacher, my busy mom brain starts to spin when a therapist is giving me a verbal list of 100 things to try this week when I'm playing with Henry. It spins again when his doctor asks me exactly how much he is eating and whether we've followed up with the feeding clinic and the developmental clinic (I could barely get to his well visit on time today, let alone consider making appointments anywhere else!). Again when we arrived late this morning for OT because our visit to the pediatrician ran over due to health concerns with one of the other boys. Again when therapists are giving me differing opinions and advice. Again when I realize I've missed a Kindergarten event because I never went through the pile of papers. And again and again and again. <br /><br />How do I do it all? I don't! Some things just get set aside. I'll catch up this weekend on bills and laundry and cleaning. I'll say yes to more play dates even when we don't have time, because I need time with other moms as much as my kids need time with friends. I'll allow myself the luxury of therapeutically blogging to get it all out. I'll give myself some grace and try to slow down and enjoy this trip to Holland and Italy and all the stops along the way.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com4tag:blogger.com,1999:blog-3000147770533509198.post-33011357282597610242010-01-19T09:34:00.000-08:002010-01-19T09:41:34.379-08:00Boring, In a Good WayI've been trying to think of what to blog about now that the dust (both literal and figurative) has settled a bit around here. I set out to create a blog in order to share my journey, tell my story . . . but I have to be honest with you . . . there isn't much to tell! Henry is 4 1/2 months old, healthy and wonderful! He's rolling over, grasping his hands together, cooing and laughing. It's normal babyhood around here. I wake up, change a lot of diapers, do a lot of laundry, clean a lot of messes. <br /><br />Boring, right? What a blessing. I wouldn't have it any other way!Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com0tag:blogger.com,1999:blog-3000147770533509198.post-51474959461675196222009-11-01T05:32:00.000-08:002009-11-01T05:33:52.876-08:00Halloween Pics<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRtwgU8bwfjTdOF26ZkZmDONZrXu4CLB99XzFMEzNkEdP1PklwlTxR7COKG8jYR983MBHNwRMqlUTkAzgJsImPtdBadZPZdweAuc3CqLYZkr4RB0F0ZnLlEy5sv3xoa3ofk6ibCAOu8i8r/s1600-h/16266_164204624908_803374908_2539781_6107296_n.jpg"><img style="cursor:pointer; cursor:hand;width: 264px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRtwgU8bwfjTdOF26ZkZmDONZrXu4CLB99XzFMEzNkEdP1PklwlTxR7COKG8jYR983MBHNwRMqlUTkAzgJsImPtdBadZPZdweAuc3CqLYZkr4RB0F0ZnLlEy5sv3xoa3ofk6ibCAOu8i8r/s400/16266_164204624908_803374908_2539781_6107296_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5399127912674123282" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrzW9cZRsTdP3yWZsRlBy_dwvoY-3IfUtztugNiR0d7D2TjA3KAu12gNqiVIC05NdkhOZ9X5tykI68UYDMqu6Xt2HstaoOgwCEuH5nz8_Q66QvV-X1ewXH4eKxzRelqq05bpg4NASkIhX4/s1600-h/16266_164204584908_803374908_2539774_3955266_n.jpg"><img style="cursor:pointer; cursor:hand;width: 264px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrzW9cZRsTdP3yWZsRlBy_dwvoY-3IfUtztugNiR0d7D2TjA3KAu12gNqiVIC05NdkhOZ9X5tykI68UYDMqu6Xt2HstaoOgwCEuH5nz8_Q66QvV-X1ewXH4eKxzRelqq05bpg4NASkIhX4/s400/16266_164204584908_803374908_2539774_3955266_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5399127915877065186" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO2bnoP8hDlS8dyU8mt8rnJffFxVrc9rK4jzO1-50QznMSDEk73PXB2ArIBuL7mO1BNwthK8HvtfL_CkxYi5ik3lb1AlJZO07m8rs2F2duGyQYjbi8mYaQul1iL9BJQimn-GqOpDAI5Isu/s1600-h/16266_164204644908_803374908_2539785_163362_n.jpg"><img style="cursor:pointer; cursor:hand;width: 264px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO2bnoP8hDlS8dyU8mt8rnJffFxVrc9rK4jzO1-50QznMSDEk73PXB2ArIBuL7mO1BNwthK8HvtfL_CkxYi5ik3lb1AlJZO07m8rs2F2duGyQYjbi8mYaQul1iL9BJQimn-GqOpDAI5Isu/s400/16266_164204644908_803374908_2539785_163362_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5399127909096700594" /></a>Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com4tag:blogger.com,1999:blog-3000147770533509198.post-30294670730335043962009-10-30T10:06:00.000-07:002009-10-30T10:17:11.480-07:00Two Months Old<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLVbUlJIALrY7o8o55ZuXZB8uwkSNc46RgeuAt8zY-bAblNT-arNKYJ3pTyLgeIc6pbHyhIeNS-pS-3udXwmAq5GPIogRK_-pjl9UwBU_c32gmKYie3ZdYZy1y8aYb24DmYCi7VB0HO3s3/s1600-h/16266_162793129908_803374908_2529200_5968373_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 264px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLVbUlJIALrY7o8o55ZuXZB8uwkSNc46RgeuAt8zY-bAblNT-arNKYJ3pTyLgeIc6pbHyhIeNS-pS-3udXwmAq5GPIogRK_-pjl9UwBU_c32gmKYie3ZdYZy1y8aYb24DmYCi7VB0HO3s3/s400/16266_162793129908_803374908_2529200_5968373_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5398443279539615282" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOBUPHT0KfauJdEAu42U6rQ9OCtxB2h5k3QmrxQ_jw8XKavjsRJ2tcEAc3c6xdS5fNm7gP_XbaQqhZGpu6SJYdaqxxahW74AaiXD6rGEzmsHqF-5uiRfbEOtcuPmZebPkV-o42cDnzhVpv/s1600-h/16266_162793124908_803374908_2529199_475211_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 264px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOBUPHT0KfauJdEAu42U6rQ9OCtxB2h5k3QmrxQ_jw8XKavjsRJ2tcEAc3c6xdS5fNm7gP_XbaQqhZGpu6SJYdaqxxahW74AaiXD6rGEzmsHqF-5uiRfbEOtcuPmZebPkV-o42cDnzhVpv/s400/16266_162793124908_803374908_2529199_475211_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5398443280521772562" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRkajM5P9ilCA_kEdFHhrQtVo4CsesALNGn9ZF_Z0bTLPcZfLwV6ADcJr_xehU7i5qXXkdbFQzCXVoRfSXSmJMj0P47QUqm_yZzJXjrMACbvmQek8pxkMREHpRilNFnwyfsGxKuCWaVOQM/s1600-h/16266_162793109908_803374908_2529196_1363883_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 264px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRkajM5P9ilCA_kEdFHhrQtVo4CsesALNGn9ZF_Z0bTLPcZfLwV6ADcJr_xehU7i5qXXkdbFQzCXVoRfSXSmJMj0P47QUqm_yZzJXjrMACbvmQek8pxkMREHpRilNFnwyfsGxKuCWaVOQM/s400/16266_162793109908_803374908_2529196_1363883_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5398443273745205730" /></a><br />Still too busy to blog these days, but I thought I would add some fall photos of the kings. Henry is two months old today and is just wonderful. He has increased his intake and gained some weight, so the feeding clinic "graduated" him. With our hectic days, I was happy to scratch that off the list! He was recently evaluated by Early Intervention and qualified for OT services, which should be starting that next week (with a focus on feeding and head control). He has the sweetest disposition and still doesn't cry or fuss much unless it's tummy time, but if William is there talking to him, he tolerates it much longer! :) I do hope to be able to write more here as we settle into our new routine and am even considering posting some of the activities we do at home as a part of the blog. Til then. . .enjoy the photos!Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com1tag:blogger.com,1999:blog-3000147770533509198.post-53176728163554971532009-10-02T08:02:00.001-07:002009-10-02T08:04:41.533-07:00Catching Up<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAFzOcW3UbZ-qRWCsyKIi776PLQr0jw4u6HGGe1l8sLzj9ils63BqgI7hDieij34T_0bgVv4H3pbHy5BzijVKZf3fVGamyQB-XJkqRW9riWT-FTvICbfAc0KSO_tJksbe21KYWgvYBx8pw/s1600-h/n803374908_7863.jpg"><img style="cursor:pointer; cursor:hand;width: 200px; height: 246px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAFzOcW3UbZ-qRWCsyKIi776PLQr0jw4u6HGGe1l8sLzj9ils63BqgI7hDieij34T_0bgVv4H3pbHy5BzijVKZf3fVGamyQB-XJkqRW9riWT-FTvICbfAc0KSO_tJksbe21KYWgvYBx8pw/s400/n803374908_7863.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5388018711628732370" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQELk4SDyFd6Ws45lT5ee2FcDV_XfnIJkYVDtMnIg7PGdrDI7u2FDICgDpcC0IdAwOu7xcRZGfHCDvTsdwEcuxElk98dspdvbwhkQ2KDopsgJwmOwHiLsPx-3O17DByYzHkbaew2M7kfzW/s1600-h/10122_141127624908_803374908_2376404_7286057_n.jpg"><img style="cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQELk4SDyFd6Ws45lT5ee2FcDV_XfnIJkYVDtMnIg7PGdrDI7u2FDICgDpcC0IdAwOu7xcRZGfHCDvTsdwEcuxElk98dspdvbwhkQ2KDopsgJwmOwHiLsPx-3O17DByYzHkbaew2M7kfzW/s400/10122_141127624908_803374908_2376404_7286057_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5388018587984238274" /></a><br /><br />What ever gave me the idea that I would have time to blog while taking care of three kids, a house and a part time job? I am realizing that some things just won’t fit into my day, and blogging (if you haven’t noticed) has had to get in line behind other, more pressing duties. Still, I would love to post updates whenever I get a free moment, and I happen to have one little moment this morning (thanks, Diego)! <br /><br />Believe it or not, Henry is already one month old!! As you can see from the recent photos, he has changed so much already (along with everything else in our daily lives, it seems). <br /><br />It was quite a surprise arrival! Scott was out of town serving as the best man in a wedding. I was nervously trying to just get through the weekend without him, hoping I wouldn’t go into labor (but never really thinking it would happen!!). When he left on Thursday, I packed a hospital bag for myself and an overnight bag for the boys in case they needed to stay with someone. I was reassured when my friend Alison joked, “You’re prepared, so it won’t happen!” By Saturday night, I was breathing a sigh of relief that we had gotten past the wedding and Scott would be returning the following evening. I spoke to him around midnight, told him I’d see him at the airport, and went to bed. Just three hours later, I woke up and immediately realized that my water had broken. Panicking for a split second, I reminded myself that I had rehearsed this scenario in my mind and was as prepared as I could be. I called Scott in New Hampshire, my parents in Ohio, and Alison who lives just a few minutes away – all of them knew it had to be me when their phones rang at 3 am! Alison took me to the hospital while her husband Josh watched 5 boys (my two and their three)! <br /><br />Despite our best efforts to wait for Scott (who managed to get an early flight and would arrive around noon), Henry was born at 9:07 am. I am so grateful for a friend like Alison, who stayed with me and was even there at the birth to welcome Henry and be the first to hold him (apart from the doctors and nurses) and videotape his first moments. Since I had a c-section, I didn’t get to hold him right away, but got to see him and kiss his sweet face before they took him to the nursery. <br /><br />It was a LONG day after that. Scott arrived around noon as expected, but Henry still wasn’t with us. Late that afternoon, our pediatrician came in and told us he was having trouble transitioning (he had low heart and breathing rates), and they wanted him to be stabilized a bit more (they were deciding whether or not to send him to the NICU). Fortunately, he improved and they brought him to us at 5:30 pm. He stayed on the heart/apnea monitor during our 5 day stay at the hospital, but improved every day and was able to come home without the monitor. Apart from that tiny scare, the only problems we have had are some feeding issues. Henry never got the hang of nursing and was rapidly losing weight after we got home. He is now on a high calorie formula and is finally gaining weight (though still only takes about 1 - 2 oz at a time on average). <br /><br />He is a wonderful sleeper and a really easy baby! He doesn’t cry much, and his cry isn’t very loud (though I’m sure his brothers will teach him how to speak up for himself). Every minute with him is a JOY! There is much more to say, but this is a long post already . . . and little people are getting hungry for lunch! ☺Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com9tag:blogger.com,1999:blog-3000147770533509198.post-43590862144275744122009-09-08T07:03:00.000-07:002009-10-02T18:16:52.292-07:003 Weeks Early!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGOwYYYMRISHPlktsqFDNqycQxmW6SXgSjkBg2EXI6xAU7rCrUInrppRIXDd94IYVrNPRSqCH-afKpSkgiMe1kBn4_zIuAaJaAhPRNtf6wzZMFCnpvegdpoxBIEPqgRZ2y3XLIgmyeNhtb/s1600-h/10122_126987639908_803374908_2237211_5319405_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 264px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGOwYYYMRISHPlktsqFDNqycQxmW6SXgSjkBg2EXI6xAU7rCrUInrppRIXDd94IYVrNPRSqCH-afKpSkgiMe1kBn4_zIuAaJaAhPRNtf6wzZMFCnpvegdpoxBIEPqgRZ2y3XLIgmyeNhtb/s400/10122_126987639908_803374908_2237211_5319405_n.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5388176509419677266" /></a><br /><br />Henry Aaron arrived 3 weeks early after all! 7 lbs 11 oz, 20.5 inches. Daddy was out of town and my water broke in the middle of the night. He sure surprised us! But we are so thankful that he is here.Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com9tag:blogger.com,1999:blog-3000147770533509198.post-21691332053797282432009-08-19T18:08:00.001-07:002009-08-19T18:11:09.975-07:00Boys<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV2IIpHJhD_lfDPAt-oFw-koSgscCTg0zSc5PUHZdvIXEAE6cjaxAaBObA1R1_zpH7b01SfiYZxPRnxOhhI6cQB34rohnvHWqRJiTN2IGiCueWcJTPjc__xGYsvJ_tI4b8-NMyS3oEShpZ/s1600-h/n803374908_2095674_6688407.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV2IIpHJhD_lfDPAt-oFw-koSgscCTg0zSc5PUHZdvIXEAE6cjaxAaBObA1R1_zpH7b01SfiYZxPRnxOhhI6cQB34rohnvHWqRJiTN2IGiCueWcJTPjc__xGYsvJ_tI4b8-NMyS3oEShpZ/s400/n803374908_2095674_6688407.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5371846810433657298" /></a><br /><br />Can I just take a moment to say how much fun little boys are? I had to share this picture of Edmund playing with his baby doll the other day. We had a good laugh!Karahttp://www.blogger.com/profile/01496833245654549131noreply@blogger.com4