tag:blogger.com,1999:blog-259144052024-03-13T11:20:13.565-04:00The Short Gut NewsThis is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.comBlogger569125tag:blogger.com,1999:blog-25914405.post-42746298307231114862018-03-23T09:34:00.000-04:002018-03-23T09:34:10.867-04:00Just trying to be a kid. Ellie was just featured in the <a href="http://www.childrenshospital.org/?_vsrefdom=corpbrandlocalbrand&gclid=Cj0KCQjwy9LVBRDOARIsAGqoVns9cUgzAiGXZzd6kgOZZbNMH-IoRgRQYkJTsxkPk6GYrL8sI_NyeNwaAh6sEALw_wcB" target="_blank">Boston Children's Hosptial</a> <a href="https://thriving.childrenshospital.org/" target="_blank">Thriving blog</a>. She is just a kid trying to be a kid.<br /><br />
<a href="https://www.blogger.com/Ellie%20was%20just%20featured%20in%20the%20Boston%20Children's%20Hosptial%20Thriving%20blog.%20%20She%20is%20just%20a%20kid%20trying%20to%20be%20a%20kid.%20%20%20%20https://thriving.childrenshospital.org/short-bowel-syndrome-care-ellie/" target="_blank">https://thriving.childrenshospital.org/short-bowel-syndrome-care-ellie/ </a><br />
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<br />Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com2tag:blogger.com,1999:blog-25914405.post-20140927108037219542016-12-11T11:02:00.001-05:002016-12-11T11:02:39.223-05:00Ellie's First PostHi, My name is Ellie and I am starting to blog for the first time :)<br />
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<b>This is me. </b></div>
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I am 10 years old, in 5th grade and live in Massachusetts. I have a dog named Tillie and a brother named Will.</div>
10 years ago on today my family brought me home for the first time!!!!!And my mom and dad just showed me the video of my mom moon walking out the door of Boston Children's Hospital with me for the first time. My parents can be strange!!<u><b> WHO WALKS BACKWARDS OUT OF A HOSPITAL</b></u>??????<br />
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I have broviac CVL and I am the 23rd person on Omegaven, and I am still on Omegaven.<br />
I went to clinic this week and I had a DEXA Scan. I had to lay on this table and a machine went over me. It was not scary!! Clinic is <u><b>NOT SCARY</b></u>!!!<br />
I enjoy playing Minecraft, watching television, and horse-back riding. Do you have Short Bowl too?? I'd like to hear from you. <br />
More to come, see you later!Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com16tag:blogger.com,1999:blog-25914405.post-51465800687296778492015-07-19T23:30:00.000-04:002015-07-20T09:34:00.694-04:00Hole in the Wall Gang Camp, Success!! Ellie loved it! We went to go pick her up and she was so happy we wished we could have left her there for another week. There were 7 girls in her cabin ranging in age from 7-9 and a wide range of diagnoses. She loved all the girls and can't wait to see them next year. From what she told us, it sounded like there was a party almost every day with different themes. This picture is from the Carnivarty. (Carnival+Party)<br />
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She swam in the pool 2 days, learned archery, caught her first bass, built the Santa Maria out of wood, took cooking classes, completed a ton of craft projects, performed Cotton Eyed Joe dance on stage with her cabin and did a solo demonstration of animal noises for the whole camp.<br />
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On the last night she was awarded a cooking award for a banana bread she made while she was there. Then her cabin later that night gave her an award call, Princess Energizer Bunny, for her endless energy. Which if you have met Ellie, you know this was the perfect award for her. <br />
These are photos of her with some of the counselors. <br />
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The medical team was amazing. They set up her TPN and Omegaven at night, hooked her up, took care of her Omegaven throughout the night, got her line ready for <a href="http://eleanorbrogan.blogspot.com/search/label/swimming" target="_blank">swimming </a>(twice) and had no leaks. They kept her up to date on all her medications and oral fluid intake and never need PRN hydration. She had a primary day nurse named Rose that she really bonded with and a night nurse, Kara that she loved as well. </div>
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Ellie and Rose</div>
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And with the help of the Danielle the Dietary Intern, she tried some new foods and found she loved them.</div>
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She had a bed in the Yellow cabin but spent her nights in the Moose lodge, the lodge that is attached to the clinic. This is because her <a href="https://grey.colorado.edu/shortgut/index.php/Omegaven" target="_blank">Omegaven</a> bottles need to be changed at night. But she befriended the other girl staying there and they had sleepovers in each other's rooms a few of the nights. </div>
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Ellie's bed in the Moose Lodge.</div>
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Over all it was a huge hit and she wants to go back for as many summers as possible.</div>
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Will had a great time while she was away. We tried to keep him as busy as possible and made sure he had a great week too.<br />
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It was very odd not having Ellie around. The first few days we walked around positive that we were forgetting something big. Nighttime was the hardest time, we couldn't shake the feeling that we should be doing something. We made it just over 48 hours before we called to the camp to check in on how she was doing. Next year will be easier.<br />
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We are incredibly grateful to everyone at <a href="http://www.holeinthewallgang.org/" target="_blank">Hole in the Wall Gang camp</a> that make Ellie's week so much fun. Now we leave you with the Hole in the Wall Gang Camp song Ellie taught us. <br />
<b>This camp was good to me! </b><br />
<b>This camp was good to me!</b><br />
<b>Thank you Paul for this Hole in the Wall!</b><br />
<b>This camp was good to me!</b>Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com4tag:blogger.com,1999:blog-25914405.post-69518514856307456742015-07-10T16:36:00.005-04:002015-07-19T20:57:46.707-04:00Ellie Goes to Camp!<div class="separator" style="clear: both; text-align: left;">
I can honestly say that I never thought we could be saying this, but Ellie is at sleep away camp for the week! She is at <a href="http://www.holeinthewallgang.org/" target="_blank">The Hole in the Wall Gang Camp</a> in CT. It took a ton of planning, scheduling and packing. The last time Ellie spent a night without one of us was Thanksgiving 2006 and she was inpatient, with Sue our favorite nurse, at <a href="http://www.childrenshospital.org/" target="_blank">Boston Children's Hospital</a>. </div>
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I thought Ellie was too young for sleep away camp. But she disagreed. Gib got the paper work going and now we are without Ellie for a whole week. She has a team of counselors, nurses and doctors taking care of her for us. We spent the past week packing all of her medical supplies. This <a href="http://www.thriverx.net/clinical_care/camps_for_children.htm" target="_blank">tool </a>helped us get ready. </div>
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We hit the road at 7 a.m. this morning with a very excited little girl. We had to remind her that she needed to sleep the night before camp. If it was up to her she would have stayed up all night asking us questions. </div>
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We spent 3 hours checking her in and explaining her medical stuff (TPN, Omegaven, G-tube, meds, oral fluids, diet and dressings) to the team. Then took her to her cabin.</div>
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Ellie is in the Yellow cabin. She actually has to sleep in a a lodge that is attached to the hospital because of her Omegaven bottles needing to be changed at night. But she gets a bed in the cabin and will spend all her time in the cabin and then sleep and get dressed in the lodge. So she gets 2 beds. It does make her different than the other kids, but she was very happy to have 2 beds. <br />
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Overall Hole in Wall Camp is like a typical summer camp on steroids. And that is coming from someone that spent 4 summers at summer camp and another summer as a counselor. <br />
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We left Ellie in her cabin and went to the family lunch. Then hit the road home. Needless to say both Gib and I cannot believe that this is really happening. I think tonight will be when things really sink in. We will be able to sleep through the night, there will be no beeping pumps, no medications to get ready, no formula to mix and for the first time since 2006 neither one of us is on call. <br />
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The fact that Ellie is gone hit Will halfway home from the camp. But, a well timed ice cream cone solved the problem.<br />
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If you want to send Ellie a letter at camp, email me at <a href="mailto:abrogan@thriverx.net">abrogan@thriverx.net</a> and I will send you her address. Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com3tag:blogger.com,1999:blog-25914405.post-77674370360847606332014-12-08T11:11:00.002-05:002014-12-08T11:30:12.038-05:00Resources for Kids with Central Lines<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There are tons of resources out there for kids with <a href="http://en.wikipedia.org/wiki/Central_venous_catheter">central lines</a>, <a href="http://en.wikipedia.org/wiki/Short_bowel_syndrome" target="_blank">Short bowel</a> or on <a href="http://en.wikipedia.org/wiki/Parenteral_nutrition" target="_blank">TPN</a>. (Adults have used them to explain their central lines to younger family members too) I have helped my home infusion company produce many educational resources but my favorite thing they have produced is their children's books and the Strap Wrap. If you are interested in any of these books or the strap wrap just email Abby at <a href="mailto:abrogan@thriverx.net" target="_blank">abrogan@thriverx.net</a></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>My Special Line:</b> This early
reader or read-to-me book addresses the importance of good line care in a simplified
manner with rhyme and repetition. The book’s
message is that a central venous line is special and needs to be kept safe,
clean and dry. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>Let's Learn About Central Lines:</b> <span style="letter-spacing: -0.05pt;">This new book
for elementary aged children discusses central lines, basic central line care
and how children can begin to take an active role in caring for their central venous
line (CVL).</span></span></div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; letter-spacing: -0.05pt;">Including:</span></div>
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<!--[if !supportLists]--><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: 12pt; letter-spacing: -0.05pt; line-height: 115%;">•<span style="font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="letter-spacing: -0.05pt;">What is a
CVL<o:p></o:p></span></span></div>
<div class="MsoListParagraph" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 13.5pt; margin-right: -.7pt; margin-top: 0in; mso-list: l0 level1 lfo1; text-indent: -13.5pt;">
<!--[if !supportLists]--><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: 12pt; letter-spacing: -0.05pt; line-height: 115%;">•<span style="font-size: 7pt; font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="letter-spacing: -0.05pt;">Who might
need a CVL<o:p></o:p></span></span></div>
<div class="MsoListParagraph" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 13.5pt; margin-right: -.7pt; margin-top: 0in; mso-list: l0 level1 lfo1; text-indent: -13.5pt;">
<!--[if !supportLists]--><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="font-size: 12pt; line-height: 115%;">•<span style="font-size: 7pt; font-stretch: normal; line-height: normal;"> </span></span><!--[endif]--><span style="letter-spacing: -0.05pt;">How they can help keep their CVL clean and dry</span><span style="font-size: 12pt; letter-spacing: -0.05pt; line-height: 115%;"> </span></span><span style="font-size: 12.0pt; line-height: 115%;"><o:p></o:p></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="line-height: 80%;"><b>HENRY </b></span><span style="line-height: 80%;"><b>IMAGINES, </b></span><b style="line-height: 115%; text-align: center;">An
Adventurous View of Short Bowel Syndrome: </b></span></div>
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<span style="line-height: 115%;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">This is book was written by a father about his son with <a href="http://en.wikipedia.org/wiki/Short_bowel_syndrome" target="_blank">Short BowelSyndrome (SBS)</a> - a condition many children and adults are living with all over
the world.</span></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="line-height: 115%;"> By using his
imagination, Henry takes the trickier parts of everyday life with an ostomy,
G-tube and central line and turns them into an adventure! If your child or a
young person in your family, school or neighborhood has this condition or has
an ostomy, central line or G-tube this book is a great way to help them learn
and have fun</span><span style="line-height: 115%;">. <b>T</b><span style="color: #17365d;"><b><o:p></o:p></b></span></span><b><span style="text-align: center;"><span style="color: #17365d;">o
order your copy visit: </span></span><span style="color: #17365d;"><a href="http://www.createspace.com/4806456">www.createspace.com/4806456</a></span></b></span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><b>Strap Wrap: A medical free alert device for children or adults on IV nutrition support.</b> </span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The strap can wrap around a seat belt strap, purse strap, diaper bag or backpack strap. The straps contains medical a short medical history, medications, allergies, Dr. contact information and emergency contact information. It was created a grandmother of a consumer of <a href="http://www.biorx.com/" target="_blank">BioRx</a> the parent company to <a href="http://www.thriverx.net/" target="_blank">ThriveRx. </a> </span><br />
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<a href="http://3.bp.blogspot.com/-J3XMdf8e_CE/VIXGciPQXJI/AAAAAAAAAGc/aQiiSLLelLk/s1600/Strap%2BWrap.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-J3XMdf8e_CE/VIXGciPQXJI/AAAAAAAAAGc/aQiiSLLelLk/s1600/Strap%2BWrap.jpg" height="320" width="205" /></a></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Watch this video to see the Strap Wrap in the news: <a href="http://www.clipsyndicate.com/video/play/746694">http://www.clipsyndicate.com/video/play/746694</a></span></div>
<span style="color: blue; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><b><br /></b></span>
<span style="color: blue; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><b>If you are interested in any of these books or the strap wrap just email Abby at <a href="mailto:abrogan@thriverx.net">abrogan@thriverx.net.</a></b></span><br />
<br />Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-83805370791506633172014-07-24T12:16:00.000-04:002014-07-24T12:17:18.136-04:00Central Line Care Videos produced for Boston Children's Hospital starring Ellie. <div class="separator" style="clear: both; text-align: left;">
<b>Last winter we had a the pleasure of helping <a href="http://www.childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videos">Boston Children's Hospital Home Parenteral Nutrition Team</a> and the <a href="http://www.dana-farber.org/">Dana-Farber Cancer Institute</a> create a series of videos on Central Line Care. Ellie and I had fun we honored to be a part of something that we hope will help others just like us. </b></div>
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<b>Oh how I wish we had these videos to watch when we were starting out.</b></div>
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To watch all the videos visit: <a href="http://www.childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videos">childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videos</a></div>
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<b>Here is a sample of what we did:</b></div>
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Hand Washing:<br />
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<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://ytimg.googleusercontent.com/vi/yfp8Xb3_lpc/0.jpg" height="266" width="320"><param name="movie" value="https://youtube.googleapis.com/v/yfp8Xb3_lpc&source=uds" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="https://youtube.googleapis.com/v/yfp8Xb3_lpc&source=uds" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
Using Hand Sanitizer:<br />
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Scrubbing the Hub:<br />
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Connecting Tubing:<br />
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Changing the Dressing:<br />
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I heard from another parent that one or more of these videos are playing on the patient channel at Boston Children's all the time as well. Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com2tag:blogger.com,1999:blog-25914405.post-69078372473181111322014-05-12T12:37:00.002-04:002014-05-12T12:38:28.804-04:00Ellie was in the Boston Globe again!Make-A-Wish accepting frequent flyer miles
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<a href="http://1.bp.blogspot.com/-DUsuIdq67bI/U3D2COVdqoI/AAAAAAAAAFo/kv5MV1pbmcA/s1600/The+Tip_+Make-A-Wish+accepting+frequent+flyer+miles+-+Travel+-+The+Boston+Globe_Page_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-DUsuIdq67bI/U3D2COVdqoI/AAAAAAAAAFo/kv5MV1pbmcA/s400/The+Tip_+Make-A-Wish+accepting+frequent+flyer+miles+-+Travel+-+The+Boston+Globe_Page_1.jpg" height="400" width="310" /></a></div>
See the whole article at: <a href="http://www.bostonglobe.com/lifestyle/travel/2014/05/10/the-tip-make-wish-accepting-frequent-flyer-miles/U5yXAQGSafN1TgRBEvD8hM/story.html">http://www.bostonglobe.com/lifestyle/travel/2014/05/10/the-tip-make-wish-accepting-frequent-flyer-miles/U5yXAQGSafN1TgRBEvD8hM/story.html</a><br />
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Last fall after <a href="http://eleanorbrogan.blogspot.com/2013/11/two-fer.html">our trip</a> we talked to <a href="http://wish.org/">Make A Wish</a> about helping them in anyway we could. Ellie and I went to a basketball game at a local college to help raise awareness and said we would be willing to do more. They asked if they could use some pictures of Ellie for an internal newsletter and we sent them 5-6 photos from the trip saying they could use whatever they wanted if it helped others get a wish too.<br />
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We never thought we would wake up to Ellie in the Globe again.<br />
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If you have miles that you are not planning on using or can't use before they expire, please consider donating them! Once donated, the miles never expire. Participating airlines include Delta, US Airways, and United/Continental. More information at <a href="http://www.massri.wish.org/miles">www.massri.wish.org/miles</a>.Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-39731110083920662212014-03-27T20:48:00.001-04:002014-03-27T20:48:50.380-04:00Sharing Your Story Can Be Such a Blessing to Someone Else! I was searching the internet for something else tonight and found this.<br /><br />
<iframe allowfullscreen="" frameborder="0" height="344" src="//www.youtube.com/embed/gTF8_1rVum4" width="459"></iframe><br /><br />
It was heart warming to see, and I loved the message. We hear from families still today that say our blog helped then when they needed it the most. Even though we don't update nearly as much as we should we keep it up and running just so it can be there to help another family when they need it. If you have a blog, Facebook page or group that you want to spread the word about just let us know!Abby Broganhttp://www.blogger.com/profile/05296750382132277235noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-46872018487616878832013-11-09T02:21:00.000-05:002013-11-09T02:21:48.008-05:00A Very Wet Day<div style="margin: 0px auto 10px; text-align: center;">
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Thursday was a wet day, A very wet day. We were up very early to slog through Honolulu traffic to Hanauma Bay, a marine reserve that was set up to conserve and manage a very healthy and very accessible coral reef near Honolulu. We were told to get there early to make sure that we had a space in the parking lot (Make A Wish made arrangements just in case it was jammed) and we were there for 9:45 AM, along with about a zillion GoPro-toting tourists that really didn't get the concept of don't stand up on the reef.</div>
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But fortunately, I had forgoten that Abby Brogan also moonlights as an underwater superhero and proceeded to escort/drag/carry Ellie <i>past</i> the hordes of googins and out into deeper clearer water where the novices didn't dare. What they found there was nothing short of spectacular. Turtles, live corals, and fish like Ellie and I had never seen before.</div>
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Ulua, or trevally, cruising the reef.<br />
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Ellie showing off the surface dives that she practiced in the pool all summer.</div>
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Abby the Underwater Superhero showing off on the bottom</div>
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One very cool urchin.</div>
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A school of convict tangs<br />
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One of the many poses that Abby used to escort Ellie around the reef.</div>
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All told Ellie and Abby were in the eater for almost three hours with one short break for Elecare and snack. Will, was happy as could be to patrol the shore wade in the warm water and throw pebbles.<br />
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Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com1tag:blogger.com,1999:blog-25914405.post-8200801397170014472013-11-08T19:15:00.003-05:002013-11-08T19:15:45.434-05:00Dry DayWaterproofing Ellie has been very successful for us over the years: Some Press n' Seal on the CVL cap and two sheets of Tegaderm over the whole site and she is good to go. but one of the downsides of this is that more than one day of this makes her skin raw and sore. So we generally try to have a dry day after every wet day to let her skin recover.<br />
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For our first Hawaiian dry day we took off for the center of the island to the Dole Pineapple plantation, a spectacular tourist trap complete with a narrow gauge train, the World's largest maze (like a hedge/corn maze but with hibiscus) and more pineapple desserts and concoctions than you could imagine. The kids loved it and we had a blast and we were home early enough to have a rest before Ellie got to do one of the other things on her Wish: A luau.<br />
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<b>The Brogans, via the sea!</b></div>
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<b>And yes, Ellie was on stage more than once.</b></div>
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But this was all a warmup for the coming wet day when Ellie finally got the chance to swim on a coral reef.Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com1tag:blogger.com,1999:blog-25914405.post-1543634874948135062013-11-05T13:22:00.002-05:002013-11-05T13:22:29.343-05:00Two-fer<h2>
<span style="font-family: Times, Times New Roman, serif; font-size: small;">Charismatic-<span style="background-color: white; color: #222222;"> (</span><span style="background-color: white; color: #222222; line-height: 15px;">karizˈmatik/)</span><span style="line-height: 1.2;"><br /></span><span style="font-weight: normal;"><span style="line-height: 15px;">Adjective. </span><span style="line-height: 1.2;">exercising a compelling charm that inspires devotion in others.</span></span></span></h2>
<span style="font-family: Times, Times New Roman, serif;"><b> Megafauna-</b> (<span style="background-color: white; color: #222222;">ˈmegəˌfônə</span><span style="background-color: white; color: #222222;">/)</span></span><br />
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<span style="font-family: Times, Times New Roman, serif;"><i><span style="color: #222222;">noun</span><span style="color: #777777;"><span style="text-transform: uppercase;"> <b>. </b></span></span></i><span style="color: #222222; line-height: 1.2;">the large mammals of a particular region, habitat, or geological period.</span></span></div>
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<span style="font-family: Times, Times New Roman, serif;"><span style="color: #222222; line-height: 1.2;">Monday was a good day. Especially for a girl with her heart set on seeing big ocean critters.</span></span></div>
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<span style="font-family: Times, Times New Roman, serif;"><span style="color: #222222; line-height: 1.2;">A spectacular dolphin experience in the morning:</span></span></div>
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<span style="color: #222222; font-family: Times, 'Times New Roman', serif; line-height: 17.27272605895996px;">Followed by a Do-It-Yourself turtle safari with Abby in the afternoon:</span></div>
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Yes, Monday was a good day. </div>
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For Will as well: <div class="separator" style="clear: both; text-align: center;">
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Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com2tag:blogger.com,1999:blog-25914405.post-16329179951001549972013-11-03T20:07:00.003-05:002013-11-03T20:25:08.267-05:00The unfiltered early returns<div class="separator" style="clear: both; text-align: left;">
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After a quick dry run in the pool this morning, Ellie, Abby and Erin took to the sea to see some fish. </div>
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Here is Ellie's unfiltered words fresh out of the water:</div>
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A success. </div>
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Abby had to drag her away from the fish.</div>
Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com3tag:blogger.com,1999:blog-25914405.post-38502927343333890992013-11-01T21:26:00.000-04:002013-11-01T21:26:23.345-04:00What's your Wish?<div style="text-align: center;">
<img alt="Make a Wish" src="http://massri.wish.org/~/media/Shared/make-a-wish-logo.ashx" /></div>
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<b>And We're Off!</b></div>
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Yes,<b> </b>after months of planning and the requisite extra fun that comes with a girl with<b> </b>some extra considerations, we are finally off to fulfill Ellie's Make-A-Wish wish: to swim with sea turtles and dolphins, see a volcano and go to a luau. </div>
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Yes, if your deduction is up and running, we are off to Hawaii! Tomorrow morning to be exact, and we couldn't be more excited.</div>
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We have known for a long time that Ellie would likely qualify for a wish and almost a year ago we started the process to apply. As we expected she was quickly approved and then it was just a question of timing and the coming week is just perfect.</div>
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So at 5:30 tomorrow morning the magic limo arrives and we (Abby, Ellie, Will, myself and Ellie's nurse, Erin) are off to Oahu. Ellie is armed with a sleeve of tegaderm to waterproof her CVL, a fresh snorkel to keep up her skills from the pool this summer and a new underwater camera. She has learned her Hawaiian fish names and even used Humuhumunukunukapuaa as a special second grade spelling word this week.</div>
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We will be sure to take lots of pictures and are going to dust off this old blog to make updates along the way. </div>
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It should be quite an adventure. And if we get more than we bargained for, a doctor that used be with the Children's Short Bowel Program works in Honolulu.</div>
Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-91012694916073246702013-03-29T11:39:00.002-04:002013-03-29T11:39:12.884-04:00Updates. Good news, Great news, Not-so great news and other things<br />
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 9.5pt;">I'm not sure if it is
the the facebookification of the world, the onset of the Age of Will who is now
2 1/2 , Ellie hitting her stride as a school-aged kid, some other factor
or a combination of a bunch of these but we have been seriously negligent in
updating this blog for a significant amount on time.</span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">So I will try to
update all fronts here with the latest and greatest from Broganland.<o:p></o:p></span></div>
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<b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Ellie: </span></b><b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"> </span></b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Ellie is great. </span></div>
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A happy soon-to-be seven
year old, she goes to first grade every morning on the bus with her
nurse/consigliere and loves first grade. Two different rounds of show-and-tell
with her class have made her medical issues more of a fascination for her
classmates than a problem. She routinely
gets supplemental IV hydration mid-day without missing a beat or a call home.
She just gets off the bus some days with a IV backpack. Abby and I
just look at each other and thank the Commonwealth of Massachusetts for good
nursing.<o:p></o:p><br />
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<a href="http://1.bp.blogspot.com/-MinqG28dETk/UVW0QxMQhhI/AAAAAAAAGpM/Bh7YIngE3W8/s1600/IMG_0571.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="http://1.bp.blogspot.com/-MinqG28dETk/UVW0QxMQhhI/AAAAAAAAGpM/Bh7YIngE3W8/s320/IMG_0571.JPG" width="320" /></a></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Ellie's school
couldn't be more accommodating. Everyone from the Principal to the nurse
and her amazing teacher are great for us and do what it takes to keep Ellie
going. Even the food service people are bending over backward to include
Ellie in school lunch by sending us their recipes and preparing special meals
for Ellie so she can go through the lunchline.
Just like everyone else. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">We got great advice
when we were moving-our town is truly where you want to be if you have a kid,
especially a kid with some issues.<o:p></o:p></span></div>
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<a href="http://2.bp.blogspot.com/-lGcOxOeC9z8/UVW0bUutBtI/AAAAAAAAGpc/NvVf1E2W2Bo/s1600/IMG_0620.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-lGcOxOeC9z8/UVW0bUutBtI/AAAAAAAAGpc/NvVf1E2W2Bo/s320/IMG_0620.JPG" width="240" /></a><b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Some very cool
news: </span></b><b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"> </span></b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Because of her
diagnosis, Ellie was approved this Spring for a wish from Make-A-Wish! We
have known for a while that it was a possibility because of her central
line and other factors so I sent an inquiry thinking that it would take a while
to get things rolling. Boy was I wrong! Within a week, we had a full approval
and a home visit scheduled and it looks like Ellie the fish/science geek wants
to go to Hawaii to see sea turtles and volcanoes. We are looking at
timing and details but it should be sometime before next winter.<o:p></o:p></span></div>
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<b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Some not-so-cool news:</span></b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";"> Ellie has been off of TPN for more than
two years now, but in the past six months her growth has stalled when it should
be moving steadily upward. We have tried a lot of tricks but we are
heading in on Monday to restart TPN and give her the boost that she
needs. We will be at Children's for 3-5 days next week getting her
restarted and watching for a side effect of restarting TPN called Refeeding
Syndrome. As we have experienced in the past, if the shit hits the fan,
it is much better to be at Children's than at home. So we will go in on Monday,
hunker down with all sorts of distractions and wait between frequent blood
tests until it is time to go home. This isn't a big mental setback for
Abby and me. Ellie hasn't made progress toward life without IV bags in a
long time so our feeling is to get her what she needs and add some muscle and
height. Adding TPN adds another few minutes to our day and adds one pump
to our arsenal but is not a significant change for us.<o:p></o:p></span></div>
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<b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">In Puder We Trust.</span></b><b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"> </span></b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">One of our chief concerns in restarting TPN
was what lipid Ellie would use. The strict Omegaven protocol prohibits
kids that have been off for more than a year from restarting Omegaven.
Which meant that we would be looking at Intralipid, as Ellie's lipid source-
the same stuff that whacked her liver when she was an infant. She is older
now so the effects of Intralipid would likely not be as severe as a few years
ago but there is that risk and her liver is already damaged so we were
anxious. Fortunately, if there is one person who was more concerned
about this than Abby and me, it was Dr. Puder at Children's who got Ellie on
Omegaven back in 2006. He went to work and within days of the nutrition
team scheduling her admission, he had persuaded the FDA to give Ellie special
approval to restart regular infusions of menhaden squeezings. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">She will not spend a
single night on Intralipid. <o:p></o:p></span></div>
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<a href="http://1.bp.blogspot.com/-X0zphuGM88s/UVW1Dk14CWI/AAAAAAAAGps/egeVXX0gpwA/s1600/IMG_0728.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-X0zphuGM88s/UVW1Dk14CWI/AAAAAAAAGps/egeVXX0gpwA/s320/IMG_0728.JPG" width="240" /></a><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Ellie's compromised
liver and her parents both did the same little dance that Carol the nurse did
when we got the news that Ellie was approved in 2006. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Omegaven Saves Lives.
<o:p></o:p></span></div>
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<b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Will: </span></b><b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: "Times New Roman";"> </span></b><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">What to say about Will? 2 1/2 and
everything you would imagine from a boy that age. Trucks, boats, cars, Richard
Scarry and a vocabulary that is growing exponentially along with the length of
his sentences. He is wonderful and oves his sister. The other night
Ellie's baby monitor stopped working in the middle of the nightand her pump
alarmed when the battery died. Will heard this and started yelling to
us,"Mom. Dad. Ellie pump Beeeeeeping! Ellie Pump
Beeping." <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">He is awesome. <o:p></o:p></span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">We think that he will
miss Ellie when we go to Children's next week.<o:p></o:p></span></div>
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<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 9.5pt; mso-fareast-font-family: "Times New Roman";">Here's to hoping for
an uneventful visit to 300 Longwood next week.<o:p></o:p></span></div>
Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com3tag:blogger.com,1999:blog-25914405.post-55533035482088890902012-08-02T12:48:00.001-04:002012-08-02T12:48:52.877-04:00America's Test Kitchen<div>
Ellie is now 6 years old. Over all she is doing well and is a very happy active little girl. But she has been dealing with Short Bowel Syndrome and all that comes with it for 6 years. Normal for her is not normal for most kids. Her normal involves monthly blood draws, lots of doctors and often not feeling well. Because of this we have started considering looking into a <a href="http://www.wish.org/">Make a Wish</a> trip for her. </div>
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Before Ellie was born I thought that Make a Wish was for dying children. One final wish. But I was wrong. These kids have to deal with so much. Much more than any child should have to deal with and on top of that, they have to grow up, make friends, go to school and learn how to live their life. We have realized that Make a Wish is for children who are dealing with a serious medical condition and now deserve a break. They deserve to receive something special for putting up with all their medical issues. </div>
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So we have been considering this for Ellie but, we haven't done anything yet. After a bad few weeks we were talking to Ellie about maybe doing something special for her. We asked her if she could go anywhere, where would she want to go? Ellie thought and thought and said, "<a href="http://www.americastestkitchen.com/">America's Test Kitchen</a>."</div>
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For a little girl who has a very limited diet and often has a belly that just doesn't feel good. She loves to watch America's Test Kitchen, read Cook's Illustrated and cook. She knows everyone on the show and talks about them like they are family. So Gib sent America's Test Kitchen an email, a really good email.</div>
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<b>Today Ellie and I toured America's Test Kitchen.</b></div>
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We walked in and while we were waiting for the tour to start Christopher Kimball walked by and Ellie fell out of her chair. He walked by again and met Ellie. I'm sorry to say that I was not on the ball and did not get a picture. I was so taken by watching Ellie completely lose her mind. After Chris, as Ellie calls him, left we started our tour.</div>
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We started in their cookbook library containing over 3,000 cookbooks. Then we saw where they photograph their food for their cookbooks. They use real food and were talking all about who was going to get the meat loaf or the chicken for lunch. Nothing I have ever cooked looked as good as those plates of food. Then we moved on to the kitchens. As we walked in the door Julia Collin-Davison walked out and said, "You must be Ellie!" <br />
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Ellie has said many times that Julia was her favorite person on the show. We were told that Chris might be there but they weren't sure about Julia. Julia WAS there and gave Ellie a tour of all the kitchens, explained some of the tests that were being run and showed us all the equipment they use. Ellie was in heaven. <br />
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All the pots and pans they use for filming and photographs. Notice how clean they are!</div>
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Test kitchen staff testing cooking grains in a pressure cooker.</div>
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Ellie and Julia on the stage where they do all the TV shows. </div>
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All the plates that they put food on, they wrap all clean plates in saran wrap to keep them clean.<br />
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5 Hams waiting for tests</div>
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We had a great time and didn't want to leave. Thank you to all the staff at America's Test Kitchen for taking time out of your day for Ellie. Thank you especially to Shannon, Julia and Chris. </div>
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<b>Ellie update:</b></div>
Ellie has been doing well. We have had our ups and downs. We had some hick ups last fall but over all she has been doing well. She is still off of TPN but still on IV hydration of D15 every night. We stopped over night feeds early last spring due to a bad round of Small Bowel Bacterial overgrowth. That fixed the problem but it still comes back every 1-2 months for a week or so. We are going to restart them in the next few weeks. <div>
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We also tried a new formula but the verdict is still out on that. We had to go back to good old Elecare for a bit but we will try the new formula again in the next week. <div>
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Other big news is that Ellie finally gained and grew this summer. She has been holding steady on both for most of the past year. It was brutal to watch her numbers go across the charts not up over the past year. But at our last clinic visit she had a nice jump up in weight and height. </div>
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All in all we are doing well. </div>
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<b>Can't forget Will:</b> </div>
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<b><span style="color: blue; font-size: large;">Happy Summer!!</span></b></div>
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<br /></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com6tag:blogger.com,1999:blog-25914405.post-57870443767104816502011-09-02T21:28:00.005-04:002011-09-02T22:06:06.572-04:00A little bit of Congressional Help, PleaseWe have been getting scary <a href="http://articles.sfgate.com/2011-08-21/news/29911050_1_drugs-in-short-supply-utah-drug-information-service-cancer-drugs">news </a>(and <a href="http://www.economist.com/node/21528274">here</a>)from around the world of TPN over the last few weeks: some of the important ingredients in TPN and the supplies that go with it are in critically short supply, as in there is NONE to be found anywhere. This isn't such a big deal for Ellie right now since she is still on just D10 overnight, but if she should need to go back on TPN, there are key elements that would need to be rationed or omitted from her mixture like calcium, magnesium and other trace elements that typical people get through their complete diets.<div>
<br /></div><div>The cause of this is uncertain but two primary reasons have been suggested: one, that there aren't enough raw materials available to make the additives and two, that these very important drugs just aren't profitable for the drug companies and they have made a cold business decision to stop making the drugs or have slowed the production down.</div><div>
<br /></div><div>If they were making widgets or car parts, this would be one thing, but we are talking about really important things that will have real consequences for thousands of people around the country including typical people who are in the hospital, need antibiotics or chemotherapy.</div><div>
<br /></div><div>So what is there to do about this other than worry and hope?</div><div>
<br /></div><div>One simple thing that we can all do is let our representatives in Washington know about the issue and the very real consequences of letting this problem continue. There are things that even a gridlocked Congress can do to urge and nudge the FDA and the drug companies to fix this problem but Congress won't act unless they hear from their constituents, who vote and are vocal. </div><div>
<br /></div><div>A simple letter to your member of Congress and Senators still has power. Find them <a href="http://www.contactingthecongress.org/">here</a>, and write them a simple letter telling them who you are, how you or your child are or will be affected by drug shortages and ask for their help. These people have connections and do solve problems for voters every day. Ask them to help and also ask them to consider sponsoring the bills that have been introduced to increase oversight over this emerging problem. Also, if your Congressman is on this <a href="http://www.contactingthecongress.org/cgi-bin/newcommittee.cgi?site=ctc2011&lang=&commcode=hcommerce_health">list </a>or or Senator is on this <a href="http://www.contactingthecongress.org/cgi-bin/newcommittee.cgi?site=ctc2011&lang=&commcode=shelp">list</a>, they sit on an important committee or subcommittee and could be even more influential in getting answers and solving this mess.</div><div>
<br /></div><div>For all of the kids and adults with short bowel and the range of other conditions that require the more than 150 medications that are currently in short supply, we thank you for your help.</div><div>
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<br /></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com3tag:blogger.com,1999:blog-25914405.post-39801830800860340522011-06-18T00:20:00.009-04:002011-06-18T09:19:17.744-04:00Ellie got the go-ahead this week to go off of TPN.<div style="text-align: left;">Again.</div><p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black">Yes, starting with next week’s shipment, she will only be getting fluids without nutritional additives and without Omegaven.<span style="mso-spacerun:yes"></span></span></p><p class="MsoNormal" style="text-align: center;margin-bottom: 0.0001pt; line-height: normal; "><b><span style="font-size:12.0pt;font-family:"Georgia","serif"; mso-fareast-font-family:"Times New Roman";mso-bidi-font-family:"Times New Roman"; color:black"><span style="color:blue"><a href="http://www.youtube.com/watch?v=F3PJEZcA4Kw&feature=related">ONE MORE TIME!!!(click on me) listen while you read</a>: NO MORE TPN!!!</span></span></b></p><p class="MsoNormal" style="text-align: center;margin-bottom: 0.0001pt; line-height: normal; "></p><p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"></p><p class="MsoNormal" style="text-align: left;margin-bottom: 0.0001pt; line-height: normal; "><span style="color:blue"><a href="http://eleanorbrogan.blogspot.com/2008/11/no-more-tpn.html"><b>Two and a half years ago she went off of TPN</b></a></span> for the first time.<span style="mso-spacerun:yes"> </span>She was growing enough in both in height and weight for her team to think she could stop her TPN(total parenteral nutrition, IV nutrition). <span style="mso-spacerun:yes"> </span>She was off of TPN for 6 months that time.</p><p></p><p class="MsoNormal" style="text-align: center; margin-bottom: 0.0001pt; line-height: normal; "><img src="http://4.bp.blogspot.com/-QTsbiO71CJ8/TfwrBnoPHsI/AAAAAAAAFgw/_0QPdlp9CFk/s400/IMG_5829.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5619413741869145794" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></p><div style="text-align: center; "><b>Ellie's 5th Birthday Party (she covers her ears when people sing)</b></div> <p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black"><o:p> </o:p></span></p> <p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black">Before her surgery to <b><span style="color:blue"><a href="http://eleanorbrogan.blogspot.com/2009/05/why-does-point-break-keep-popping-into.html">lose her ostomy</a>,</span></b> we put her back on to get her ready and fatten her up for surgery and keep her weight up during the recovery time while her reconnected bowel learned how to behave.<span style="mso-spacerun:yes"> </span>That strategy worked and she did very well and for the next 2 plus years. But, </span>she has done well....ON TPN.</p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="http://3.bp.blogspot.com/-C5XWX4oRDnI/TfwskHGwrKI/AAAAAAAAFhg/M6Xhe-sMepo/s400/IMG_5984.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5619415433945853090" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span><div><div style="text-align: left;"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black">The problem is that TPN even with <b><span style="color:blue"><a href="http://grey.colorado.edu/shortgut/index.php/Omegaven">Omegaven</a></span></b>, is hard on her body.<span style="mso-spacerun:yes"> </span><span style="mso-spacerun:yes"> </span>We trust that her liver is protected but we never know for sure. </span>Because of this we have been trying and trying for 2 years to get her off again.<span style="mso-spacerun:yes"> </span>We have been trying different things on and off to wean her from the calories and fats that come with TPN. <span style="mso-spacerun:yes"> </span>She has been growing on and off for over 2 years. But not enough and not consistently.<span style="mso-spacerun:yes"> </span>Which <span style="mso-spacerun:yes"> </span>sucked. <span style="mso-spacerun:yes"> </span>She would put on weight and then a round of <span style="mso-spacerun:yes"> </span>bacterial overgrowth would kick her back down to more days of TPN.</div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="http://4.bp.blogspot.com/-DMCPsmAunLk/Tfyj7IjplWI/AAAAAAAAFiM/7F6z21E0lBY/s400/IMG_6048.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5619546671356155234" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span></div><div> <p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black">This Wednesday we went in for clinic with Dr. Lo (the TPN guru at Children’s) and Ellie had gained enough weight and grown enough for the team to feel that it was time for her to come off</span>of IV nutrition again.<span style="mso-spacerun:yes"> </span>She will still be on IV hydration 7 nights a week, but no IV nutrition.</p><p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal">Those of you that have met Ellie have seen how she runs from place to place, swims all summer, dances from room to room and lives life on her toes. <span style="mso-spacerun:yes"> </span>The heat of summer is not the time to decrease her IV hydration.</p></div><div><p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black">So we are now in a two month trial period away from the complex land of TPN.<span style="mso-spacerun:yes"> </span>As with all things short gut we understand that TPN may come back to Ellie if she needs it,<span style="mso-spacerun:yes"> </span>but for now this significant step is great and makes us think about the terrifying possibility of a night without the whirr of an IV pump coming through the monitor.<o:p></o:p></span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="http://4.bp.blogspot.com/-lsh8dOlvFYI/Tfyj68xeAvI/AAAAAAAAFiE/UwsB7VtZLPM/s400/IMG_6015.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5619546668192891634" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span></div><div><div style="text-align: left;">We have a busy summer planned for Ellie. Complete with a Lego camp with 100,000 Legos. We have discovered that soccer is probably not a good option for Ellie. We signed Ellie up for soccer every Saturday afternoon. And after 2 sessions we agreed that soccer is not the sport for Ellie-Here we work all day everyday to get her to gain weight and then we sign her up for something that is just one giant calorie burn. We would watch her run around for over an hour struggling to keep up with the other kids, and then it occurred to us...</div> <p class="MsoNormal" align="center" style="margin-bottom:0in;margin-bottom:.0001pt; text-align:center;line-height:normal"><span style="font-size:12.0pt;font-family: "Georgia","serif";mso-fareast-font-family:"Times New Roman";mso-bidi-font-family: "Times New Roman";color:black">WHAT WERE WE THINKING?????<o:p></o:p></span></p> <p class="MsoNormal" align="center" style="margin-bottom:0in;margin-bottom:.0001pt; text-align:center;line-height:normal"><b><span style="font-size:12.0pt; font-family:"Georgia","serif";mso-fareast-font-family:"Times New Roman"; mso-bidi-font-family:"Times New Roman";color:black">So no more soccer.<o:p></o:p></span></b></p> <p class="MsoNormal" align="center" style="margin-bottom:0in;margin-bottom:.0001pt; text-align:center;line-height:normal"><b><span style="font-size:12.0pt; font-family:"Georgia","serif";mso-fareast-font-family:"Times New Roman"; mso-bidi-font-family:"Times New Roman";color:black"><o:p> </o:p></span></b></p> <p class="MsoNormal" style="margin-bottom: 0.0001pt; "><span style="line-height: normal; font-size: 12pt; font-family: Georgia, serif; color: black; ">For now Ellie will continue to dance ballet, go to school (Kindergarten starts in September), take </span><span style="line-height: normal; font-size: 12pt; font-family: Georgia, serif; color: black; ">swimming lessons (at the Y!) and be a very typical 5 year old. </span>And well, I am pretty happy about that. In the future, I think that she will rock T-ball as a left field daisy picker. </p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="http://4.bp.blogspot.com/-p_UOPNvIV2M/Tfyj6uePo6I/AAAAAAAAFh0/JaLwOKb11mk/s400/IMG_5962.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5619546664354161570" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span></div><div><div style="text-align: left;">About her brother Will: He is an eating machine! He is eating, growing in to a tank of a baby. I was watching him chew the other day and realized that what I was watching took us 6+ months of feeding therapy with Ellie. It was a thing of beauty. I was mesmerized:</div><img src="http://3.bp.blogspot.com/-vZ0t1E2vJJU/Tfwp_dMfJOI/AAAAAAAAFgo/mghk3lNRLiY/s400/IMG_5993.JPG" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5619412605197034722" /> <p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black"><o:p> </o:p></span></p> <p class="MsoNormal" style="margin-bottom:0in;margin-bottom:.0001pt;line-height: normal"><span style="font-size:12.0pt;font-family:"Georgia","serif";mso-fareast-font-family: "Times New Roman";mso-bidi-font-family:"Times New Roman";color:black">He has also decided that crawling is for sissies. I honestly think he started pulling himself to standing and cruising because we told him that Ellie started cruising at 7 months. A Month behind his sister Will started pulling himself up to standing and walking.<span style="mso-spacerun:yes"> </span>Bring on the crash helmet. <o:p></o:p></span></p><div><img src="http://2.bp.blogspot.com/-VnqoYcaKEvI/Tfyj6hdtBYI/AAAAAAAAFh8/iDgfWMAhc8A/s400/IMG_6013.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5619546660862231938" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></div><div><div style="text-align: center; "><br /></div></div></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com5tag:blogger.com,1999:blog-25914405.post-91981395379563062042011-05-23T23:19:00.002-04:002011-05-23T23:22:28.319-04:00<span class="Apple-style-span" style="color: rgb(58, 60, 64); "><div style="text-align: left; "><span class="Apple-style-span" ><b>This is an article that I wrote for <a href="http://www.complexchild.com/">Complex Child Magazine</a> back in April. We are working on a new post as well. </b></span></div><div style="font-family: 'Comic Sans MS'; font-size: 13px; text-align: center; "><span ><span style="font-weight: bold; "><br /></span></span></div><div style="font-family: 'Comic Sans MS'; font-size: 13px; text-align: center; "><span ><span style="font-weight: bold; ">Current Information on Omegaven</span></span><br />by Abby Brogan<br /></div><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">My daughter Ellie was born in April of 2006. She came a month early, but over all my pregnancy was normal and she was initially doing very well. Things began to change after her first hour. The next 24 hours were something I wouldn’t wish on anyone. It ended with both of us in a new hospital, her recovering from exploratory abdominal surgery, and the very nice surgeon explaining to us that Ellie was born missing 90% of her small bowel and 30% of her colon. After she fully explained what Ellie’s GI system looked like, she started talking about what Ellie’s life was going to be like and what the future could be like. It was a very scary and grim conversation. </span><br /><br /><div style="font-family: 'Comic Sans MS'; font-size: 13px; text-align: center; "><img src="http://articles.complexchild.com/april2011/aprilpics/elliebaby.jpg" /><br />Ellie as a baby before Omegaven<br /></div><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-weight: bold; ">Starting TPN</span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Ellie’s GI tract was not able to absorb enough nutrients to sustain life, so she was placed on IV nutrition support, also called Total Parenteral Nutrition. Total Parenteral Nutrition (TPN) is made up of two main parts. The first part contains all the fluids, vitamins, minerals, amino acids, and medications. The second half of the mixture is the lipid, consisting of a fatty acid that has been broken down enough to be absorbed through the blood stream, and blended into an emulsion that keeps the fats from separating from the fluids. TPN enables an individual to live and grow even though he or she cannot eat. </span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">However, the down side of TPN is that for most individuals on it for an extended period of time, particularly children under two years of age, it will also cause a build-up of fat in the liver causing damage. For these individuals, there is a race to rehabilitate the GI tract and get off TPN before the liver becomes too damaged. If they cannot get off TPN fast enough, they often will be listed for a liver transplant and, if needed, other organs as well. For those ineligible for transplant, liver damage can lead to death.</span><br /><br /><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-weight: bold; ">What is Omegaven?</span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">In 2001, Children’s Hospital Boston started doing research on TPN to find out what part of TPN was causing liver damage. Mark Puder, MD, a surgeon, and Kathleen Gura, PharmD, a pharmacist, collaborated on the research with other doctors at Children's Hospital Boston. Through studies done on mice, they discovered that it was the lipid portion of the TPN that was causing the damage. But the fats contained in lipids are essential for the body, so they needed to find an alternative. </span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Dr. Gura had previously used Omegaven, a lipid emulsion derived from fish oil that contains omega-3 fatty acids, to treat a patient with a soy allergy and severe fatty acid deficiency. From this experience she suggested they try Omegaven in their trials. </span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">The results were very promising. </span><br /><br /><div style="font-family: 'Comic Sans MS'; font-size: 13px; text-align: center; "> <img src="http://articles.complexchild.com/april2011/aprilpics/omegaven.png" /><br /></div><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">In an article written by Children’s Hospital Boston, Dr. Puder explained the results that showed that parenteral nutrition without the fat makes the liver fatty, and by adding the Intralipid, it becomes even more so.</span><span style="font-family: 'Comic Sans MS'; font-size: 13px; "><sup>1</sup></span><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; "> "That fat becomes more or less a fuel that burns the liver, causing it to become inflamed....But the Omegaven is an anti-inflammatory lipid that prevents fat build-up in the liver. So if there's no fuel—fat—there's no fire—injury."</span><span style="font-family: 'Comic Sans MS'; font-size: 13px; "><sup>1</sup></span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">The results were so promising that on September 26, 2004, the team at Boston Children’s Hospital started the first child on Omegaven. They saw improvements in one week, and a month later the child’s liver function tests were good enough that he was taken off of the transplant list. In most children, during the first month or so the direct bili (liver function test) goes up and then comes down. It is known as the Omegaven roller coaster. But, during this time you get to watch your child turn pink again.</span><br /><br /><div style="font-family: 'Comic Sans MS'; font-size: 13px; text-align: center; "><img src="http://articles.complexchild.com/april2011/aprilpics/bili.jpg" /><br />Ellie's bili chart<br /></div><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Some hospitals are using Omegaven in combination with regular vegetable oil-based lipids such as Intralipid. Dr. Gura commented on this, stating, “Based on published papers, it appears that children with PN liver injury do better with Omegaven alone (not mixed with Intralipid). The Diamond paper from Canada actually shows this, although they still like to do the combination until the child fails and then they switch them to plain Omegaven.”</span><sup style="font-family: 'Comic Sans MS'; font-size: 13px; "><span >2</span></sup><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; "> </span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">To date Children’s has treated 166 children with Omegaven and administered over 100,000 doses. Omegaven has helped almost all 166 children, but the team has learned that the faster these children get on Omegaven, the better they do. Using it as a last resort or rescue is not always successful. The damage to the liver is already done. </span><br /><br /><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-weight: bold; ">How to Get Omegaven</span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Omegaven has not been approved by the FDA to be used broadly. Because of this, it has a Compassionate Use Only status, meaning that it can only be used if it will save the child’s life. To show that the child needs Omegaven, he must have failing liver function tests, including a direct bilirubin number greater than 2 mg/dL, indicating liver damage called cholestasis. </span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">In the beginning, patients had to transfer to Boston to get Omegaven therapy. Now, thanks to the passionate outreach by Puder and Gura to the medical community, it has been used by almost every free-standing children’s hospital in the United States. Physicians can also apply to be able to administer Omegaven themselves, and the Boston Omegaven team has gone so far as to publish their </span><a href="http://www.oley.org/documents/How_Physicians_Can_Obtain_Omegaven.pdf" style="font-family: 'Comic Sans MS'; font-size: 13px; text-decoration: underline; color: rgb(45, 53, 64); ">therapy instructions with the Oley Foundation</a><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">, a support group for those who rely on TPN. </span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Each year, more and more insurance companies are paying for Omegaven enabling patients to be treated locally and not requiring them to travel to Boston. The FDA now allows billing of insurance companies upon request. Approval, however, isn’t mandatory, and insurance companies are not required to pay for it. For a list of the hospitals that have used Omegaven and the insurance companies that have covered it, visit the </span><a href="http://grey.colorado.edu/shortgut/index.php/Omegaven#Omegaven" style="font-family: 'Comic Sans MS'; font-size: 13px; text-decoration: underline; color: rgb(45, 53, 64); ">Short Gut Wiki</a><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">.</span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Making Omegaven available to everyone and covered by insurance will continue to be an issue until it is approved by the FDA for use in all people receiving TPN. Currently, Fresenius Kabi AG, the manufacturer of Omegaven, is working with Children’s Hospital Boston to get the necessary data for a new drug application submission to the FDA. The process to get a drug approved in the US is lengthy. There was hope in the beginning that additional animal testing would not have to be done or could be avoided; however, these tests were ultimately required and are currently underway.</span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Children’s Hospital Boston has not seen any adverse effects of the use of Omegaven, but they are monitoring all their children with long-term blood work and other follow up examinations. </span><br /><br /><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-weight: bold; ">Success!</span><br /><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">The child that received the first dose as an infant in 2004 is still on TPN and Omegaven at age seven, goes to school and has shown no adverse effects from the TPN that likely would have destroyed his liver just a few years ago. </span><br /><br /><div style="font-family: 'Comic Sans MS'; font-size: 13px; text-align: center; "><img src="http://articles.complexchild.com/april2011/aprilpics/ellietoday.JPG" style="width: 300px; height: 400px; " /><br />A recent picture of Ellie<br /></div><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">My daughter Ellie was the 23rd child to receive Omegaven, and has now been on it for almost five years. She is doing well, growing and thriving. Both my husband and are so thankful for Omegaven, and the doctors that brought it to our attention. I will not let myself imagine where she would be without it. </span><br /><br /><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-style: italic; ">Thanks to Mark Puder, MD, and Kathleen Gura, PharmD, for their personal assistance in providing information for this article.</span><br /><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-style: italic; ">Abby lives in the Boston area with her husband and daughter Ellie. Ellie was born in 2006, missing 90% of her small bowel and 30% of her colon due to Jejunal Atrisia. Ellie is diagnosed as having Short Bowel Syndrome. Ellie has had multiple surgeries since birth and is on tube feeds and Home Parenteral Nutrition (HPEN). Abby and her family have faced the many challenges that come along with having a child with tubes, yet lead a remarkably active lifestyle. Abby is also a consumer advocate for ThriveRx. Please feel free to contact Abby at </span><br /><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-style: italic; ">1-774-270-3425 or via email at </span><a href="mailto:abrogan@ThriveRx.net" style="font-family: 'Comic Sans MS'; font-size: 13px; text-decoration: underline; color: rgb(45, 53, 64); font-style: italic; ">abrogan@ThriveRx.net</a><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-style: italic; ">.</span><br /><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; "> </span><br /><br /><hr style="font-family: 'Comic Sans MS'; font-size: 13px; width: 860px; height: 2px; "><sup style="font-family: 'Comic Sans MS'; font-size: 13px; "><span >1</span></sup><a href="http://www.childrenshospital.org/dream/dream_fall06/fishing_for_the_right_solution.html%20%20See%20also%20http://pediatrics.aappublications.org/cgi/content/full/118/1/e197" style="font-family: 'Comic Sans MS'; font-size: 13px; text-decoration: underline; color: rgb(45, 53, 64); ">http://www.childrenshospital.org/dream/dream_fall06/fishing_for_the_right_solution.html See also http://pediatrics.aappublications.org/cgi/content/full/118/1/e197</a><br /><sup style="font-family: 'Comic Sans MS'; font-size: 13px; "><span >2</span></sup><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; ">Personal communication with Dr. Gura. The study she cites is Diamond IR, Sterescu A, Pencharz PB, Kim JH, Wales PW. Changing the paradigm: omegaven for the treatment of liver failure in pediatric short bowel syndrome. </span><span style="font-family: 'Comic Sans MS'; font-size: 13px; font-style: italic; ">J Pediatr Gastroenterol Nutr.</span><span class="Apple-style-span" style="font-family: 'Comic Sans MS'; "> 2009;48(2):209-15.</span></span>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-73430947337151484572011-03-09T07:48:00.002-05:002011-03-09T07:52:47.361-05:00Trouble for Omegaven in Maryland<span class="Apple-style-span" style="color: rgb(42, 42, 42); font-family: Tahoma, Verdana, Arial, sans-serif; "><span class="ecxApple-style-span" style="line-height: normal; font-family: Tahoma; "><div style="text-align: center; font-size: 10pt; "><span class="Apple-style-span" style="color: rgb(42, 42, 42); font-family: Tahoma, Verdana, Arial, sans-serif; font-size: 13px; "><span class="ecxApple-style-span" style="line-height: normal; font-size: 10pt; font-family: Tahoma; "><img src="http://t2.gstatic.com/images?q=tbn:ANd9GcT2_3d0nQYGzKPbV-7SEWWC94aspespuaBDhUIODqpMnuPuHMBshw" /></span></span></div><span class="Apple-style-span" >Gib just learned that there is a bill before the Maryland legislature that will prohibit the manufacture, distribution or sale of any products made from Atlantic Menhaden, the tiny smelly fish that we have been told is the primary source for Omegaven's omega-3 oils. HB1142, as it is known, is scheduled for a hearing on March 16. It is very vague but could mean the end of omega-3 supplements, medications, possible research in Maryland unless they can be shown to be derived from non-Menhaden sources.</span></span><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><br /></span></div><div><span class="Apple-style-span" style="line-height: 17px; "><br /></span></div><div><span class="Apple-style-span" style="line-height: 17px; "><span class="ecxApple-style-span" style="line-height: normal; "></span><span class="ecxApple-style-span" style="line-height: normal; font-family: Tahoma; "><a href="http://house.state.md.us/2011rs/bills/hb/hb1142f.pdf" target="_blank" style="line-height: 17px; font-weight: inherit; text-decoration: underline; color: rgb(30, 102, 174); cursor: pointer; ">http://house.state.md.us/2011rs/bills/hb/hb1142f.pdf</a><br /></span></span><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><br /></span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="Apple-style-span" style="line-height: normal; font-size: medium; "><br /></span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="Apple-style-span" style="line-height: normal; font-size: medium; ">We are not fans of the commercial menhaden industry and believe their fishing should come under more stringent control to look out for the oceans and the Chesapeake Bay, but this approach could have real consequences for people, both old and young in Maryland and beyond.</span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><br /></span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><br /></span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " >If you would like to have your opinion heard on this, especially if you live in Maryland, letters can be addressed to:</span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><br /></span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><span class="ecxApple-style-span" style="line-height: 20px; font-family: 'Times New Roman'; "><span style="line-height: normal; "><b style="line-height: 20px; font-weight: bold; "><br /></b></span></span></span></div><div style="line-height: 17px; font-family: Tahoma; "><span class="ecxApple-style-span" style="line-height: normal; " ><span class="ecxApple-style-span" style="line-height: 20px; font-family: 'Times New Roman'; "><span style="line-height: normal; "><b style="line-height: 20px; font-weight: bold; ">ENVIRONMENTAL MATTERS COMMITTEE <br />Delegate Maggie McIntosh, Chair <br />Delegate James E. Malone Jr., Vice Chair </b><br /><br /></span></span><span class="ecxApple-style-span" style="line-height: 20px; font-family: 'Times New Roman'; "><span style="line-height: normal; ">Room 250, House Office Building, Annapolis, MD 21401-1991 </span></span></span></div></div></span>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-8189910987976132822011-03-02T17:19:00.003-05:002011-03-02T17:38:30.477-05:00Not Heavy EnoughWe had clinic today with Dr. Lo's TPN clinic. Ellie had only gained just a tiny bit and had grown an inch since last Nov. The problem is in December she got sick, got admitted, had really bad SBBO and lost a ton of weight. So the fact that she is up from November's weight is good news to us. But when they did the body mass evaluation her numbers were down. So she is growing but needs more calories. They want us to get those calories enterally not through more TPN. So we are going to push more elecare by mouth and turn up the overnight enteral pump. We are also going to try going up in calories per ounce of formula. <div><br /></div><div>They also talked about prepping to get her off of TPN/hydration fluids. To do this we are decreasing the amount of every overnight hydration bag from 1200mls to 1000mls. We have clinic again in 2 weeks and if she is doing well we will decrease more, if not then we go back up. First they said they wanted to leave every night at 1200mls and then do one night at 600mls. The idea of that made me gulp. So we compromised with a decrease to 1000mls. </div><div><br /></div><div>All in all, they were happy with how she was doing, just not as impressed as I was. So now we try new stuff and hope for a big weight gain over the next few weeks. We're in for big fun now!!!</div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com1tag:blogger.com,1999:blog-25914405.post-88136585452346283352011-03-01T11:21:00.005-05:002011-03-01T12:11:04.132-05:00Think Heavy & Remembering the Beginning.Ellie has been doing really well lately. She is eating like a horse and we have been able to keep better control over her bouts of overgrowth. From what we learned in the last <a href="http://thriverx.net/PDFs/thrive_maxhealth_flyer9.pdf"><b>Maximize Health</b></a> webinar, protein is key for Ellie. Protein is digested in your Jejunum and the only small bowel that Ellie has is her Jejunum. So we have kicked it up a notch in the protein department. We have started offering, low fat ground turkey, low fat ground beef, poached chicken and some vegetarian options. Eggs apparently at a perfect protein and Ellie is loving her eggs right now. She has been very happy with our diet modifications. <div><br /></div><div>So, we are keeping our fingers crossed that at our TPN clinic tomorrow we will hear good news. We always tell Ellie to think heavy thoughts before she steps on the scale at clinic. And tomorrow she better be thinking HEAVY. We are only on 3 nights of TPN and we want OFFFFFFFFFFFFFF!<div><div><br /></div><div><a href="http://eleanorbrogan.blogspot.com/2008/11/no-more-tpn.html">Ellie has already come off of TPN once</a>. When she was 2 and half years old she was off for 6 months. Then we did the reconnection surgery and now almost 2 years later we are hoping to get off again. Keep your fingers crossed for us!! </div><div><br /></div><div>Getting this close to getting off of TPN has made us think about when we went on. I have also been talking to some parents that are right at the beginning of this roller coaster ride. I have forgotten how scary and uncertain things were after Ellie was born. William has been very easy and it has only pointed out to us how hard things really were. When Ellie was born there was very little information out there about Short Bowel, TPN or Omegaven. Many times we felt like we were flying blind. We did get hope when Ellie was a month old, a family that used to live in AZ send us a picture of their son that was short bowel. He looked fantastic. It made us realize that how things were now was not how they were going to end up. </div><div><br /></div><div>Now there are many resources out there for parents and adults with short bowel. Over the next few weeks I am going to update the links we post on this blog to make sure that all the resources are listed. I also want to update our blog list. Most of the kidos listed are around Ellie's age, give or take a year. I would love to add some blogs/caringbridge sites for more kids and even some for adults. If you have any suggestions for resources or would like your blog added please either leave a comment on here or email me abbybrogan@hotmail.com.</div><div><br /></div><div>The next topic for Maximize Health is fats in the short bowel diet and how to avoid fatty acid deficiency. This will be very important if we get off of TPN!! </div><div><br /></div><div><br /></div><div> </div></div></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com4tag:blogger.com,1999:blog-25914405.post-10477992349253108362011-01-27T10:58:00.005-05:002011-01-27T12:30:47.081-05:00Nutrition for Short GutWe have struggled with Ellie's nutrition for a while and found that there were very few resources out there to help. It is a balancing act of getting her to eat and gettine her off of TPN,...good diet=less TPN. <div><br /></div><div>We have a good nutritionist at <a href="http://www.childrenshospital.org/"><b>Boston Children's</b></a> but we only see her once every 2 months or if something is wrong. We have a great nutritionist through ThriveRx but what I have always wanted was a book or guide that we could keep on hand. Something that we can also share with our family and Ellie's nurse to help them understand the intricacies of Ellie's diet. <div><div><br /></div><div>Finally we got what we needed. ThriveRx has created an online <a href="http://digestive.niddk.nih.gov/ddiseases/pubs/shortbowel/"><b>short bowel</b></a> diet guide called <a href="http://thriverx.net/PDFs/thrive_maxhealth_flyer9.pdf"><b>Maximize Health</b>.</a> Each month they release a new topic, so far they have covered Diet overview, hydration, Carbohydrates and the next module is going to be on protein. The educational modules are available on line and then they host a webinar on the second Tuesday of each month led by the author of the modules. She gives a better explanation of the content of the modules and then at the end she answers any questions that you might have. </div><div><br /></div><div><span class="Apple-style-span">For us the Carbohydrate module was very informative as this is 80% of Ellie's diet. It changed the way we looked at her food and made us be much more aware of what she is eating. I am very excited about the module on protein since we know this is very important for Ellie but we are always struggling to get enough in to her. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">The best part about this education program is that it is free to everyone. If you are interested just visit <b> <a href="http://thriverx.net/">ThriveRx.net</a> </b> You have to register for the program, this will give you access to all the past modules, and recordings of past webinars and get you an invitation to upcoming webinars. </span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">If you have questions about this email me at abbybrogan@hotmail.com.</span></div><div><span class="Apple-style-span"><br /></span></div><div><span class="Apple-style-span">They a<span class="Apple-style-span">re also hosting a webinar next week on TPN stability called. </span><span class="Apple-style-span"><b>T</b><span class="Apple-style-span" style="line-height: 16px; "><span class="body_copy" style="line-height: 16px; "><b>PN Compatibility and Stability: What’s the big deal?</b> it s on <span class="body_green" style="line-height: 16px; ">February 4th @ 12:00 noo</span></span><span class="body_green" style="line-height: 16px; ">n EST.</span><span class="body_copy" style="line-height: 16px; "> </span></span></span></span></div><div><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="line-height: 16px; "><span class="body_copy" style="line-height: 16px; ">Presenter: Sheila Pedapati, Pharm.D. </span></span></span></span></div><div><span class="Apple-style-span" style="line-height: 16px; "><span class="Apple-style-span"><span class="body_copy" style="line-height: 16px; ">She will talk about:</span></span></span></div><div><ul><li><span class="Apple-style-span" style="font-family: georgia; font-size: medium; "><span class="Apple-style-span" style="line-height: 16px; "><span class="body_copy" style="line-height: 16px; ">V</span></span><span class="Apple-style-span" style="border-collapse: collapse; color: rgb(51, 51, 51); line-height: 15px; ">erification of IV compounds and supplies</span></span></li><li><span class="Apple-style-span" style="font-family: georgia; font-size: medium; border-collapse: collapse; color: rgb(51, 51, 51); line-height: 15px; ">Patient counseling regarding medications, supplies, and pump use</span></li><li><span class="Apple-style-span" style="font-family: georgia; font-size: medium; border-collapse: collapse; color: rgb(51, 51, 51); line-height: 15px; ">TPN compounding and different types of pumps</span></li><li><span class="Apple-style-span" style="font-family: georgia; font-size: medium; line-height: 16px; "><span class="Apple-style-span" style="line-height: 15px; border-collapse: collapse; color: rgb(51, 51, 51); ">Working closely with nurse liaisons to optimally manage patient care</span></span></li></ul><span class="Apple-style-span" style="font-family: georgia; font-size: medium; line-height: 16px; ">IF you are interested in this one email: <a href="mailto:info@thriverx.net" class="purplelink" style="text-decoration: none; "><span class="Apple-style-span">info@thriverx.net</span>.</a></span></div><div><div><br /></div></div></div></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com0tag:blogger.com,1999:blog-25914405.post-3589357573800719022011-01-12T13:43:00.009-05:002011-01-12T14:35:29.985-05:002010 A YEAR IN REVIEW<div style="text-align: left;"><span class="Apple-style-span" ><span class="Apple-style-span">Again we have let too much time pass between posts.</span><span> </span><span class="Apple-style-span">Posting once in 6 months is not OK.</span><span> </span><span class="Apple-style-span">Rather than try to catch up with a quick update.</span><span> </span><span class="Apple-style-span">I am just going to do a review of the year.</span></span></div> <p class="MsoNormal" style="text-align: center;"><span class="Apple-style-span" ><b>2010 A YEAR IN REVIEW</b></span></p><p class="MsoNormal" style="text-align: left;"><span class="Apple-style-span" ><span class="Apple-style-span"><b></b></span><span class="Apple-style-span">We started the year with the huge bummer of Gus getting diagnosed with cancer.<span> </span>Then moved on to the excitement of Ellie’s first solid poops.<span> </span><span> </span>In mid January we had a new refrigerator delivered and installed.<span> </span>The next morning we woke up to a flooded basement, and flood damaged kitchen.<span> </span>This led to a nice little kitchen and basement renovation that we have always wanted to do, Thanks Sears!!.<span> </span>During all this we also found out I was finally pregnant with baby number 2.<span> </span>I was rocked by ragging morning sickness, but I would have put up with anything, we were so excited to be pregnant again.<span> </span><span> </span>I think this made loosing Gus in April a bit easier to deal with.</span></span></p> <p class="MsoNormal"><span >We struggled with hydration for Ellie through the end of the spring into the beginning of summer.<span> </span>We finally got things under control just in time for the Oley conference in NY.<span> </span>This kicked off a great summer with Ellie taking to swimming like a fish.<span> </span>We spent a week on the <st1:place st="on">Cape</st1:place> with my family.</span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://3.bp.blogspot.com/_7bJo7ykE0xQ/TS36-A8Xl_I/AAAAAAAAFNI/lq9RVSUU0Uk/s400/DSC06353.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561377058184468466" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 286px; " /></span><p class="MsoNormal"><span ><span> </span>Ellie was on the beach and in the water everyday.<span> </span>We managed to get our routine for covering her dressing down so well that she went the whole week on the beach, and in the water, without her dressing ever getting wet.<span> </span>She had such a blast she has been talking about going back ever since.</span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://3.bp.blogspot.com/_7bJo7ykE0xQ/TS3690xEWmI/AAAAAAAAFNA/gj9S-PF0-14/s400/DSC06399.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561377054915844706" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span><div><div style="text-align: left;"><span class="Apple-style-span" >The summer ended with Ellie starting school again.<span> </span>She started five days a week and we struggled all fall to keep her in all 5 days.<span> </span>She stays home if anyone in her class or the class next to hers has a stomach bug or if she is feeling punky.<span> </span>We work with her school to create a letter that goes out to all the parents explaining Ellie’s issues and why following the school’s sick policy is so important to her. <span> </span>This worked well last year and so far has worked well this year. The best part is it really helped other parents be able to us about Ellie. </span></div><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TS36-rBit_I/AAAAAAAAFNY/r7lpv6DL_0U/s400/IMG_4389.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561377069480458226" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span></div><div><div style="text-align: left;"><span class="Apple-style-span" >We spent the fall apple picking, going to local farms, exploring Boston and enjoying the cooler weather.</span></div><span class="Apple-style-span" ><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TS39cYlk2dI/AAAAAAAAFNg/S7kITXx92Fs/s400/IMG_4530.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561379778950650322" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "><img src="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TS39crRc0SI/AAAAAAAAFNo/e2CpXSnR7mw/s400/IMG_4521.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561379783966511394" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span></span><p class="MsoNormal"><span class="Apple-style-span" ><span></span>I loved the last part of my pregnancy and loved making it all the way to my due date.<span> </span>My pregnancy with William was much easier and I felt much better thought out the whole thing.<span> </span>This just made us realize how sick Ellie was in utero and how much of a toll that took on me.<span> </span>William was a breeze in comparison.</span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://3.bp.blogspot.com/_7bJo7ykE0xQ/TS36-b0ymVI/AAAAAAAAFNQ/ThQR7y1W3Iw/s400/IMG_4370.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561377065400441170" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span></div><div><div style="text-align: center;"><b><span class="Apple-style-span" >At the center of the hedge Maze</span></b></div><span class="Apple-style-span" ><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; "></span> </span><p class="MsoNormal"><span class="Apple-style-span" >William was born via C-section because I went into labor but never progressed.<span> </span>We called the ball a bit earlier with William than we did with Ellie and that made my recovery much faster with William.</span></p> <p class="MsoNormal"><span class="Apple-style-span" ><span><o:p> </o:p></span><span class="Apple-style-span">Ellie was a giraffe for Halloween and managed to cover most of the neighborhood with her friends.</span></span></p><img src="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TS39cx3DZ4I/AAAAAAAAFNw/CD3Arrqs2Ic/s400/IMG_4698.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561379785734842242" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /><p class="MsoNormal"><span class="Apple-style-span" ><span class="Apple-style-span"></span><span> </span><span class="Apple-style-span">She doesn't like chocolate so that made the candy easier to deal with.</span><span> </span><span class="Apple-style-span">And after the first few days she forgot that she had candy and that made it easier for Gib and I to finish it off.</span><span> </span></span></p> <p class="MsoNormal"><span class="Apple-style-span" ><span><o:p> </o:p></span><span class="Apple-style-span">I took the rest of the year off from work and enjoyed the rest of the fall and holiday season at home with my kids.<span> </span>I am still getting used to saying “kids”.<span></span><span></span></span></span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TS39dSojIaI/AAAAAAAAFN4/ECW5qFXFSZg/s400/IMG_5289.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561379794532376994" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span></div><div><div style="text-align: left;"><span class="Apple-style-span" >Through out the fall we struggled with Ellie’s short bowel bacterial overgrowth (SBBO) , so much so that the intervals between outbreaks got to be shorter than 1 week.<span> </span>We made our rounds through different drugs trying out Flagyl, Vanco and Cipro without really making any progress. <span> </span>We got to the point where we were giving her an extra 1000 mls of hydration fluids each day and still not keeping up with what she was loosing through her loose stools.<span> </span><span> </span>This finally came to a head in December when we lost control of Ellie’s hydration and had to have her admitted to Children’s.</span></div> <p class="MsoNormal"><span >She spent 5 days in the hospital getting hydrated, doing bowel prep and getting a scope of her bowels to see if we could see anything that was wrong.<span> </span>We were also able to sample some of the fluids that they found in her bowels and culture it see what bacteria we were dealing with.<span> </span>They typed it out and then tested different antibiotics on it and found that Bactrum was the new antibiotic that we should try.</span></p> <p class="MsoNormal"><span >We did a week of Bactrum right before Christmas and it finally stopped the cycle of SBBO that we had been seeing.<span> </span>We also finally started probiotics (VSL3) after talking to another family that has been using them for years.<span> </span>Our team at Children’s was against this decision but they understood why we wanted to try them.<span> </span>And so far so good, it has been just under a month since we saw any signs of SBBO.<span> </span>(knock on wood now)</span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TS39dgAoOCI/AAAAAAAAFOA/d6MDQk4SDf4/s400/IMG_5277.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561379798123034658" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span><div><div style="text-align: center;"><span class="Apple-style-span" ><span class="Apple-style-span">Christmas was great, we even got some snow to make it a true white Christmas.</span><span class="Apple-style-span"><span> </span></span></span></div><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TS3_F9khq9I/AAAAAAAAFOI/e1f6ZfqwL9I/s400/IMG_5396.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561381592764623826" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 400px; " /><p class="MsoNormal"><span ><span></span>We spent the week following Christmas and New Years in <st1:place st="on"><st1:state st="on">Maine</st1:state></st1:place> with Gib’s family.<span> </span>We had a blast and Ellie loved seeing everyone up there.<span></span></span></p><span class="Apple-style-span" style="color: rgb(0, 0, 238); -webkit-text-decorations-in-effect: underline; " ><img src="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TS3_GBZ-bJI/AAAAAAAAFOQ/h76qUkKPOxI/s400/IMG_5456.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561381593794112658" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span></div><div><div style="text-align: left;"><span class="Apple-style-span" >So, now we have started the New Year.<span> </span>Things are good so far.<span> </span>In comparison to last year it has been an uneventful year so far.<span> </span>We did make the decision to take Ellie out of school for two days a week; we are hoping this will give her a chance to recover from her fall. William also started part time daycare last week.<span> </span>I think that was harder on me than it was on him.</span></div> <p class="MsoNormal"><span >All in all William has been so easy and laid back that if we could afford it I would be pregnant again.<span> </span>It has been great for Gib and I to have the chance to be typical parents.<span> </span>There is nothing like a very high maintenance baby to make a typical baby fell like a cake walk.<span> </span>Although we did have to remind our pediatrician<span> </span>to treat us like first time parents because we have no clue what to do with a baby that is under 8 months old and at home.<span> </span>All the typical kid stuff throws us for a loop.<span> </span>Things like… eating and pooping, those are things we didn’t have to deal with in Ellie’s first few months.</span></p><img src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TS3_GaEUOEI/AAAAAAAAFOY/bBEvo3QyGew/s400/IMG_5514.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5561381600414152770" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /> <p class="MsoNormal"><span class="Apple-style-span" ><span>Today we are spending the day inside watching a true Nor’easter dump close </span><span class="Apple-style-span">to 2 feet of snow on our house.<span> </span>We have been out playing in it once already today and will head out again as soon as our mittens dry out.<span> </span>We promise to make more of an effort to keep this blog up to date this year. I know you have heard that be</span><span class="Apple-style-span">fore, but this time we really, really promise!</span></span></p></div></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com7tag:blogger.com,1999:blog-25914405.post-78797983718743975552010-10-20T21:31:00.004-04:002010-10-22T15:06:58.589-04:00William Pics #2<div style="text-align: left;">Here are some more pictures of William. We were discharged from the hospital yesterday. We have all been recovering trying to sleep as much as possible. Right now William is spending all his time eating and sleeping. Now here are some more pics of William and his family.</div><div style="text-align: center;"><a href="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TL-X8mecrEI/AAAAAAAAE-c/k9VPIFJeWXo/s1600/IMG_4597.JPG"><span class="Apple-style-span" ><img border="0" alt="" src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TL-X8mecrEI/AAAAAAAAE-c/k9VPIFJeWXo/s400/IMG_4597.JPG" /></span></a></div><div style="text-align: center;"><a href="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TL-X8GgQuCI/AAAAAAAAE-M/0xsoNN3iA6k/s1600/IMG_4579.JPG"><span class="Apple-style-span" ><img border="0" alt="" src="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TL-X8GgQuCI/AAAAAAAAE-M/0xsoNN3iA6k/s400/IMG_4579.JPG" /></span></a></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TMHTvKdUriI/AAAAAAAAE_U/iPxm4CG52CY/s1600/IMG_4618.JPG"><span class="Apple-style-span" ><br /></span></a></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTuDVdOHI/AAAAAAAAE_E/x_adlrmkSjY/s1600/IMG_4574.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTuDVdOHI/AAAAAAAAE_E/x_adlrmkSjY/s400/IMG_4574.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530934605510424690" /></a><div style="text-align: center;">William and his Aunt Jennifer</div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTt2fOcJI/AAAAAAAAE-8/3N-Kfw_9t9k/s1600/IMG_4608.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTt2fOcJI/AAAAAAAAE-8/3N-Kfw_9t9k/s400/IMG_4608.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530934602061738130" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTtLBJKDI/AAAAAAAAE-0/o4f0B5fFQrE/s1600/IMG_4604.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTtLBJKDI/AAAAAAAAE-0/o4f0B5fFQrE/s400/IMG_4604.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530934590392838194" /></a><br /><div style="TEXT-ALIGN: center; MARGIN: 0px auto 10px"><a href="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TL-X7-c0xrI/AAAAAAAAE-E/BB4amTkB4VI/s1600/IMG_4575.JPG"><span class="Apple-style-span" ><img border="0" alt="" src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TL-X7-c0xrI/AAAAAAAAE-E/BB4amTkB4VI/s400/IMG_4575.JPG" /></span></a> </div><div><div style="TEXT-ALIGN: center; MARGIN: 0px auto 10px"><a href="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TL-X8WxnddI/AAAAAAAAE-U/skgaFes-tRk/s1600/IMG_4595.JPG"><span class="Apple-style-span" ><img border="0" alt="" src="http://2.bp.blogspot.com/_7bJo7ykE0xQ/TL-X8WxnddI/AAAAAAAAE-U/skgaFes-tRk/s400/IMG_4595.JPG" /></span></a> </div><div style="clear:both; text-align:CENTER"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="http://1.bp.blogspot.com/_7bJo7ykE0xQ/TMHTus7_xeI/AAAAAAAAE_M/ZC1b_fZxUOI/s400/IMG_4617.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530934616677926370" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span></div><div style="text-align: center;">What the house looked like when we got home. Thanks Sara, Jennifer, Karlene and Ellie!</div><div><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TMHTvKdUriI/AAAAAAAAE_U/iPxm4CG52CY/s400/IMG_4618.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530934624602336802" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span><div></div></span></span></div><div style="clear:both; text-align:CENTER">Karlene, Ellie and William </div><div style="clear:both; text-align:CENTER"><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TMHYHnOiLJI/AAAAAAAAE_0/yPNx1JYOUEw/s400/IMG_4663.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530939442688306322" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; -webkit-text-decorations-in-effect: underline; " /></div><div style="text-align: center;"><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; ">William in a blanket that his Aunt Karen knit </span></span></div><div><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="http://3.bp.blogspot.com/_7bJo7ykE0xQ/TMHWheQyw6I/AAAAAAAAE_s/K3jrX_TULQ8/s400/IMG_4623.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530937687935206306" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span></span></div><div><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="http://3.bp.blogspot.com/_7bJo7ykE0xQ/TMHWgzpIZkI/AAAAAAAAE_k/BX4oslivVOc/s400/IMG_4621.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530937676494562882" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 300px; height: 400px; " /></span></span></span></div><div><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; "><img src="http://3.bp.blogspot.com/_7bJo7ykE0xQ/TMHWgqIBIkI/AAAAAAAAE_c/ogd9QjjudDs/s400/IMG_4619.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5530937673939755586" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 400px; height: 300px; " /></span></span></span></span></div><div style="text-align: center;">William and his sister</div><div style="clear:both; text-align:CENTER"><a href="http://picasa.google.com/blogger/" target="ext"><img src="http://photos1.blogger.com/pbp.gif" alt="Posted by Picasa" style="border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;" align="middle" border="0" /></a></div></div><div style="clear:both; text-align:CENTER"><br /></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com9tag:blogger.com,1999:blog-25914405.post-47425254819507923002010-10-18T09:21:00.004-04:002010-10-18T09:52:07.910-04:00William Gilbert<div style="text-align: center;"><br /></div><div style="text-align: left;">Ellie got a little brother this weekend:</div><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TLxQvghPHQI/AAAAAAAAE9o/P8P75I_xk6s/s400/IMG_4560.JPG" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 372px; height: 400px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5529383219617537282" /><div style="text-align: left;"><br /></div><div style="text-align: center;"><br /></div><div>William Gilbert Brogan arrived at 2:47 AM on Sunday. 8 pounds 11 oz. and perfect.</div><div><br /></div><div>The question now is how long will it take us to get used to a typical kid, doing typical things. Poop, eating, and sleeping are all new for us and force us to admit to the nurses that we are not quite first time parents.</div><div><br /></div><div>Abby and I both look to clear IV lines when we pick him up. </div><div style="text-align: center;"><br /></div><div>Ellie wanted us to know that he shouldn't be afraid about dressing changes and wondered where his ostomy bag was because that's what babies have.</div><img src="http://4.bp.blogspot.com/_7bJo7ykE0xQ/TLxL7SOM-iI/AAAAAAAAE9g/-KzG5jpRdwE/s400/IMG_4565.JPG" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5529377924379900450" /><div><br /></div><div>How different it would have been to have the complicated kid come second.</div><div><br /></div><div><br /></div>Gib and Abby Broganhttp://www.blogger.com/profile/06179363281707963164noreply@blogger.com10