tag:blogger.com,1999:blog-24720716968741636492024-03-14T04:16:46.416-04:00From a Mothers Perspective..I am here to share the trials and tribulations of my daughter, Alexis, who was diagnosed with Ulcerative Colitis at age 3. Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-2472071696874163649.post-27517480393785835492014-09-29T10:18:00.001-04:002014-09-29T10:18:27.955-04:006 months, already?I seriously did not realize it had been THAT long. So much to talk about, so I will try to jump right in. My writing time is rare now a days, but we will talk about that in a few :)<br />
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Alexis is (currently) doing fine. I refuse to say great and jinx anything because the past few months have been beyond stressful. Over the past year we have been battling pouchitis non stop. We would go through the Cipro/Flagyl course and her symptoms would bounce right back. My first indicator of pouchitis was always "holding" (Not sure what else to call it-- this is what Alexis and I refer it to!) Where she will stop whatever she is doing, cross her legs and stand there "holding" herself for about 30 seconds or so. She tells me she feels as tho she has to go to the restroom very bad, and holding is what she does to prevent having an accident. Eventually the symptoms progressed into your more well known pouchitis signs such as: increased frequency, decreased appetite, night time incontinence, fever and pain in her bottom. I always felt like a complete failure every time I had to take Alexis back to the hospital for more meds.<br />
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After our last visit to Childrens, I knew Alexis would be put on permanent medication for pouchitis. However, I refused to go down this road without putting up a fight. I spent so many hours googling and reading forums on different methods other people have tried. SO many failures, but I read about so many people who had success in treating their chronic pouchitis. I had so much hope and determination to beat this. I had been so depressed after scheduling Alexis' GI followup, that I was seriously making myself sick coming up with various (horrible) things that could happen because of the chronic pouchitis. I dont know why I do it to myself-- I would give anything to worry about her college fund.. and what career choices she will make.. but I just can't get past the huge IBD wall thats standing in my way.<br />
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I hope one day that changes. But until then, I will do everything in my power to keep Alexis healthy. I will try and touch base on everything I have started with her.<br />
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<b>Vitamins and Supplements</b><br />
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Fish Oil- 227mg x4 day<br />
Vitamin D3-2000 iu x2 day<br />
Turmeric 400 mg x1 day<br />
*B6 2mg<br />
*B12 1000 mcg<br />
*Folic Acid 800 mcg (all mixed into 1 small tablet that dissolves under the tounge)<br />
Childrens Multivitamin x2 day<br />
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I have recently purchased Biocidin drops. Not to much info out there from j-pouchers so I will make sure to update everyone on how Alexis does on it.<br />
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We have also started giving Alexis her VSL #3 (DS) in enema form. I will say it has not been fun AT all, but I feel as tho this has been the most helpful change we have made. I really feel as tho her pouchitis issues stem from improper emptying of her pouch and the enema really helps clean things out. We recently purchased a "squatty potty" stool as well, so I hope that helps her out even further.<br />
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<b>Dietary Changes</b><br />
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I had planned on going full SCD (for a full explaination of the SCD diet, click <a href="http://www.breakingtheviciouscycle.info/p/beginners-guide/" target="_blank">here</a>! It has been a lifesaver for so many), but after all the other changes we had made I decided I would be a little more laid back as long as we stuck with everything else. However, I did make quite a few changes.<br />
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<u>Eliminated unnecessary dairy</u>. Personally, I am lactose intolerant.. so I am well aware of "safe" foods. This was a little touch since Alexis is a huge milk drinker.. but we have been successful in making the switch over to almond milk. We still allow yogurt as I mix in additional vsl into it, but no more than 1 a day.<br />
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<u>Limited amount of sugar-</u> Alexis has a huge sweet tooth, so I knew this was a problem we needed to correct. I have been making more of her favorite snacks at home instead of buying them and skipping out on all the extra COMPLETELY unnecessary sugar! We still allow SOME snacks... but in moderation (and defiantly not everyday). No more kool aid, sugary juices or fruit stored in syrup.<br />
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<u>Carbs-</u> Alexis has never been a big carb eater, but I still have switched over to organic, whole grain ANYTHING instead of buying the refined, more processed (and unfortunately) more delicious counterparts.<br />
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Shopping has become more difficult. I will buy sugar free, gluten free, dairy free and/or organic whenever possible. I shop for a majority of our produce at a local farm that just so happens to be a 5 minute drive from my house. I am making more clean food at home instead of the processed boxed dinners. We still eat out, but will keep those instances few and far between if possible! I have also been packing Alexis' lunch everyday so I know exactly what she is eating away from home.. and that it is "safe". <br />
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Making all these changes have been fairly expensive, but totally worth it since it is not only benefiting Alexis-- but the entire family as well. I hope to update in another 6 months that she is doing very well and has made even more progress!<br />
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Now, and update on our everyday life.. Can you believe Alexis is almost 8!? (I can't! Seems as tho she was only a baby just yesterday..) She is in the second grade and recently started gymnastics! She is around 4 ft tall and is weighing around 60 pounds. After being stuck in size 6 for the past few years.. she has finally graduated to a size 7/8 and sometimes even an 8/10! She learned how to ride her bike without training wheels a few months ago and has become quite obsessed with making normal everyday objects for her American girl dolls. She loves watching youtube video tutorials.. so I was planning on making a video to post directly to the blog with all of her personal feelings regarding her jpouch to date.<br />
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We recently moved into our *forever* home and Alexis finally has her <b>own</b> bedroom, which she is ecstatic about. Hard to believe we went from a 1200 sq ft house ( 1 and a 1/2 bath) to a 2500 sq ft house with 2 full and one half baths! As a family of 5, we were bursting at the seams so this move has been such a blessing. I felt as if giving Alexis her own space was important, and the extra full bath has been (and will continue to be) a lifesaver with 3 girls :)<br />
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Hope to update more soon!<br />
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Thanks for reading!!Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com1tag:blogger.com,1999:blog-2472071696874163649.post-47898872224933769282014-05-07T09:24:00.003-04:002014-05-07T09:25:18.252-04:00Donations-- and a quick update!Alexis is almost 2 years post op total colectomy and 1 year 7 months (to the day!) post op jpouch takedown. Despite the anal stenosis, several rounds of pouchitis, and emergency surgery... things are going well. I was so scared and overwhelmed during my last post that I immediately just regretted everything I ever put Alexis through. Somehow, we all prevailed, and believe the outcome to date was (for the most part) worth the wild ride. She is doing great currently! She is finishing up her 1st grade year (and is excelling at it! Top of her class, despite all of the days she missed!) and she is finally well enough to learn how to ride her bike WITHOUT training wheels. A little late to the game, but I know she will get it in no time!<br />
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We are back in gear raising money for the Crohns and Colitis Foundation of America! Currently, TEAM ALEXIS, has THREE ways you can help us out!<br />
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You can donate to our team page directly <a href="https://secure3.convio.net/ccfa/site/Donation2;jsessionid=FEBA06EE6491AB04B81F21C4253D57D8.app338a?idb=96656781&12609.donation=form1&df_id=12609&FR_ID=4311&PROXY_ID=2163425&PROXY_TYPE=20&source=boundlessfundraising&sub_src=bfDskFbPfSched" target="_blank">here!!!</a><br />
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Or you can place an order for a Bravelet <a href="https://bravelets.com/bravepage/alexis-fights-back-against-ibd" target="_blank">right here!</a> Cute purple colored bracelets. Each bracelet yields a $10 donation!<br />
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You can also go for lunch or dinner May 16th-May 18th at Uno Pizzeria & Grill in Pickerington on 256. A portion of your total will be donated to Team Alexis. We will have a booth set up right in front with a display of Alexis-- also we will have a ton of flyers in hopes random patrons will grab one and increase sales even more! Make sure you submit the "dough ticket" (flyer) to your server, so your meal will count!! Spread the word!! <br />
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Alexis' wish trip to Disney has been postponed until around the end of the year sometime. She is looking forward to it more than anything, and we cannot wait until it is our turn to take off. This girl deserves the world handed to her on a platter, but to a 7 year old girl-- this trip and everything the foundation is planning for her is a pretty close second! I just hope the next few months go by fairly quickly for us (specially since we are selling our home!)<br />
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so, until next time...:)<br />
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<tr><td class="tr-caption" style="text-align: center;">Wacky Day at school!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">St. Patricks Day!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Visiting our local dam!</td></tr>
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Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-73312522989360377612013-12-12T18:36:00.001-05:002013-12-12T18:36:17.073-05:00If I only knew then...what I know now.One of these days.. I will make myself sit down and go over all that has happened over the last few months. I haven't been updating because I am so busy with my 3 girls (although, I wish it was because I had nothing to say.)<br />
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I will say that at this point, I wish we never had the colectomy. I wish we would have pushed further and tried more medications. I know once UC patients get to a certain stage in the disease, that there isn't anything left to do but remove the colon.. however, I feel that I was so uneducated on various methods that are out there at the time that I felt as tho I had no other option. I fooled myself into thinking the colectomy would be our saving grace, and that it would allow Alexis to live a NORMAL, HEALTHY life... because, like they say..she would be CURED! Unfortunately, it has only lead to a whole other slew of problems. More surgeries, PTSD, anal stenosis (that includes at home dilation done by yours truly :/ ) and long term antibiotics. We are currently hoping and praying we aren't dealing with Chronic Pouchitis.<br />
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If anyone has any immediate questions, email me. I will respond and share as much info as I can.<br />
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Until next time!<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com2tag:blogger.com,1999:blog-2472071696874163649.post-53975673844499787222013-10-02T17:04:00.001-04:002013-10-02T17:04:52.808-04:001 year 3 months post total colectomySorry for the serious lack of updates. As a mother of 3 kids (Alexis will be 7, Kyleigh is 3 1/2 and Kennedy is 6 months old) , I can never find the time to sit down and just write without someone needing something -- and by the time I can get back to it, I can't collect my thoughts enough to make any sense! I am always up to answer any questions via email...ANYTIME! I may not update, but I am always checking in :)<br />
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So, lets get down to business.<br />
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Alexis has been doing fabulous for the most part. She averages about 5 bathroom trips a day, and manages to sleep all night! We are not giving her any medication besides a probiotic (VSL #3) and she can eat everything besides popcorn, as it causes major stomach pains! We have also limited the sugary drinks as it also upsets her belly, and milk at bed time is a huge NO-NO. She was having some problems with incontinence overnight and we finally figured out that milk played a huge role in that. We took away the milk, and the accidents stopped. She still drinks it throughout the day and handles it just fine.<br />
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A few weeks ago we took Alexis and her younger sister to Kings Island. I was worried how Alexis would handle it since it was so hot out and I didn't know how all the walking would affect her body. She did great! We made sure to keep her hydrated and she had a blast the entire day. When Alexis had her colon and her UC was active, we could never do anything like this! It was so nice and I can't wait to do it year after year.<br />
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Forgot to mention that Alexis started first grade, and is surpassing her grade level in nearly every subject! I am so proud of her with all of the school she missed last year. She is so awesome!<br />
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Just wanted to give all of her followers an update. I apologize my post is all over the place, but I desperately wanted to update while keeping my kids in line. ha!<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com1tag:blogger.com,1999:blog-2472071696874163649.post-37675278898130549312013-07-12T12:42:00.000-04:002013-07-12T12:43:49.732-04:00You're beautiful baby from the outside in<div class="separator" style="clear: both; text-align: center;">
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This picture makes me an emotional mess. Just seeing her "before" picture brings back the painful memories of all that Alexis went through, as well as my family. Totally not fair, but she dealt her hand of cards like a champ-- and came out on top.<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-75110978207714832972013-06-30T20:43:00.000-04:002013-06-30T20:43:17.432-04:00Updates!Alexis is doing great! She is currently on summer vacation, and anxiously awaiting what first grade has to bring. Despite all of the school she missed during Kindergarten, she is still at nearly a 2nd grade reading level and is reading anything and everything she can get her hands on!<br />
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We are in the midst of battling her first go round with pouchitis. Bad stomach pain at the beginning but once I got her to the hospital and on the antibiotics, she did a complete turn around fairly quickly! Just a few more days left on her meds, and she is good to go. Hopefully we don't encounter it again for a looong long time!<br />
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I will leave you all with an updated picture. Look how good she looks! To all of you parents out there who think getting a colectomy is the end of the world: its not. Alexis was so sick and the j-pouch has seriously given her life back!<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com1tag:blogger.com,1999:blog-2472071696874163649.post-32058922977139839232013-04-18T13:14:00.001-04:002013-04-18T13:14:39.722-04:00Happy and Healthy.... :)<div class="separator" style="clear: both; text-align: center;">
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<a href="http://www.buzzfeed.com/summeranne/24-small-meaningful-acts-of-kindness">http://www.buzzfeed.com/summeranne/24-small-meaningful-acts-of-kindness</a><br />
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Alexis is #17 in this article! It's amazing to still come across articles regarding all of the Reddit love she received! They really lifted her spirits after her operation(s).<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-70489793544376510622013-03-26T17:32:00.000-04:002013-03-26T17:32:00.204-04:00NO news is good news!So, I sincerely apologize for the lack of updates. There just isn't much to say when things are going so well. According to my web stats, I am still getting several hits a day... so if anyone has any questions on anything.. please feel free to ask!<br />
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Alexis is still symptom free. The only medication she is prescribed is a probiotic and she is growing like a weed! She is above average in nearly all of her school subjects (which really surprised me considering how much school she missed out on) and for the most part she is always pain free. We are still dealing with the all mighty butt burn on occasion, but it is not nearly as often as it was in the early days. We also deal with random episodes of painful cramping, but that is also to be expected. Most of the time, taking a breather helps out. Other times a dose of tylenol is needed... either way, she is still happier now than she was 6 months- year ago.<br />
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Since my last update, my family welcomed our final member!<br />
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Meet Kennedy!<br />
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I am off to do some cleaning for this upcoming weekends festivities. I hope you all have an awesome Easter!</div>
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-364139492393728562013-01-10T18:28:00.004-05:002013-01-11T11:15:39.252-05:002013 Take Steps!Alexis and our family will once again be participating in this years CCFA Take Steps, Be Heard Walk for a cure. Last year Team Alexis raised around $1500.00, and we are hoping to surpass this for 2013! Alexis is currently "cured" of Ulcerative Colitis, but she will always be a member of the IBD family. I want nothing more than a cure to be found so other kids like her can live a normal life without undergoing the numerous surgeries to remove organs!!<br />
<br />
If you can help us out in ANY way, we would appreciate it. I hope we can raise over $2,000.00 this year!!<br />
<br />
<a href="http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-CentralOhio?team_id=120353&pg=team&fr_id=3821" style="font-family: arial, helvetica, clean, sans-serif; font-size: 12px; line-height: 16px;" target="_blank">Personal Page URL: http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-CentralOhio?team_id=120353&pg=team&fr_id=3821</a><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/553088_10200296294389216_484546903_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/553088_10200296294389216_484546903_n.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Can you believe she is already back in school? 7 days post op and she was begging to go back!</td></tr>
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com1tag:blogger.com,1999:blog-2472071696874163649.post-52385312507399518582013-01-06T20:32:00.004-05:002013-01-06T21:50:41.934-05:00Going home!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVhsrUsEfrprkdDZucFrlyNRJIcIGALChege_PHchV7tOhsINVDmsVZtj9x18tYH1qWwLKNlSiUGQNAlO9R94HCIauFuHVm7mWepayyoB_hJEERHsQWqRWU9Kspcuu5LAluDxE0dFMgza3/s1600/IMAG0766.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVhsrUsEfrprkdDZucFrlyNRJIcIGALChege_PHchV7tOhsINVDmsVZtj9x18tYH1qWwLKNlSiUGQNAlO9R94HCIauFuHVm7mWepayyoB_hJEERHsQWqRWU9Kspcuu5LAluDxE0dFMgza3/s320/IMAG0766.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Post-op ileostomy Reversal</td></tr>
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Tomorrow!!<br />
<br />
I am so excited :) <br />
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Alexis has done SO well they feel comfortable releasing her just FOUR days post op! I was not expecting (yet hoping) that we would be leaving so soon. Her tiny body bounced back quicker than I imagined and you would never guess that the girl JUST had surgery! She has only requested Tylenol twice since being taken off of the pain pump. Such a trooper!<br />
<br />
The only requirement we must meet before being discharged is meeting (once again) with the G.I department. I will get to discuss how we will treat Alexis from here on out. Not sure at this time if they will request probiotics or anything of the sort-- but we shall see! I will update again within the next few days!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/740737_10200270943915470_1330490535_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/740737_10200270943915470_1330490535_o.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My little J-Pouch Beauty Queen--first post op meal!</td></tr>
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com2tag:blogger.com,1999:blog-2472071696874163649.post-17938412751983937892013-01-03T20:02:00.002-05:002013-01-03T20:02:41.037-05:00Today was the day!Takedown went great. No more ostomy!!<br />
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Alexis is currently resting comfortably. No NG tube (yay!), no catheter, she is on a manual operated pain pump instead of a continuous drip of morphine and she has already made it to the playroom today!<br />
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She is pretty amazing :)<br />
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Will update more later. Thanks for checking in!Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-35651641716925123072012-12-29T17:33:00.003-05:002012-12-29T19:00:35.296-05:005 days till takedown...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/464834_10200202023472502_1527724434_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash4/464834_10200202023472502_1527724434_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas Morning</td></tr>
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Alexis has been getting random cards over the past few days that Children's Hospital has been forwarding to us. I greatly appreciate them, however Alexis' surgery isn't scheduled until Thursday Jan 3rd! Once we are settled in the room, I will share all info as she really LOVES receiving them. Thanks to those of you who did send them, as we appreciate the thoughts as Alexis' take down approaches!!<br />
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Over the past week, Alexis has turned SIX!,lost one of her front teeth, we celebrated Christmas and have been enjoying her time off from school.<br />
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Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-1901658422912283862012-12-19T20:27:00.003-05:002012-12-19T20:35:33.382-05:00Reflecting..<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/556345_320405821406863_2078197415_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/556345_320405821406863_2078197415_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alexis and Sparky the dog at a visit with Santa!</td></tr>
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A year ago, right around this time Alexis started flaring. At the time I figured it was a normal flare that would be controlled with a round of steroids. Obviously, <u>I was wrong</u>.<br />
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Our lives felt as if they were spiraling out of control over the next few months. I became obsessive over Alexis' lab results as we found ourselves in and out of the hospital receiving blood transfusions, Remicade infusions -- and @ 10 mgs/kilo (which is the absolute max dose they will give someone) every FOUR weeks (but they prefer you to space them out to 8 week intervals). Nothing was working. "Colectomy" was being thrown around FAR too often..<br />
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...and.. you get the idea..things were just not. good.<br />
<br />
I never thought we would come near the end of the tunnel...I felt like we were forever trapped in a dark hole. I felt as if Alexis would never get better....and I never looked at the surgery as our saving grace, but more as a last resort that we were forced into.<br />
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But, July came and went and we made it through surgery #1. Shortly after Alexis became a poster girl for IBD all over the web! Cards came flowing into NCH, and we seen her on several front pages of major websites. The out pour of love was simply amazing. Not only did she receive well over 500+ cards from complete strangers, we were getting the word out on just how serious UC and Crohns was. I have talked to so many people who hide their disease from the world, as they are scared to talk about it. I think the more attention we bring to IBD, the better. .. Everyone seems to know someone who suffers from the chronic illness, yet so many people have no clue what it all entails. I would like to think Alexis helped break down the wall, and make discussing IBD a little less 'taboo'.<br />
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A week post op from surgery #1, Alexis' was better than ever. Her body seemed to thrive without her colon. She was happy and having an ostomy did not bother her at all. She was off of all medications and we could get out and FINALLY do things again as a family.<br />
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A few weeks after the surgery, we found out we were having another baby GIRL! My husband and I have dealt with several "unexplained losses" over the years, so we were absolutely thrilled to add yet another little beauty queen to our family.<br />
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In October, we made it through surgery #2. Healing time took a few days longer than we had anticipated.. but there were no problems and Alexis did great.<br />
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And now, here we are. Alexis is turning SIX in just 4 days, Christmas is less than a week away and the FINAL surgery is in 2 weeks.<br />
<br />
.. My point is, the last year has been trying. Enough to throw ANY one into a deep dark depression. We all managed, and came out somewhat better in the end. We also have <b><u>so</u></b> much to be thankful for. Things have been slowly on the up and up, and I didn't see how it could get any better until after the final surgery..<br />
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but, I was so so wrong!<br />
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I received a call mid morning yesterday regarding a dream request that was submitted on behalf of Alexis to the Sunshine Foundation who deal directly with kids who have chronic illnesses. (I submitted hospital records and letters from Alexis' Doctor a couple months back, and then.. It completely slipped my mind.) I was absolutely shocked when she told me they had moved Alexis to the official waiting list and wanted to call and let me know. I was speechless. A rush of emotions came over me, and I of course started crying and thanking the woman. We had wanted so badly to take Alexis on vacation, but with everything that's gone on over the past year... financially we just could not do it. Alexis would ask us constantly when we were going to Disney World, and we would tell her in a couple years (not even knowing if <i>that</i> was possible).<br />
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She explained that our family would be sent on a five day/four night trip to Florida. This vacation also included: room and board in one of their many themed homes (or "cottages"), car rental, tickets to Disney, Universal, Sea World and Lego Land! They were even going to give us additional funding to cover the cost of food! Simply Amazing. We would never be able to afford something so extravagant on our own unless we saved up the next 5 years! Florida is so expensive, and this is truly a once in a lifetime opportunity that I am beyond grateful to be able to experience with my little fighter!! It will be another year or so before we make it down, but that gives us time to save (as I want to be able to do the overpriced, way cool things in the parks as well!) and it also gives Alexis plenty of time to heal after her next surgery. We will also be traveling with our newest family member, so the older she is... the better!<br />
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I will update again...but I am sure it will be in 2013! Surgery is January 4th, so expect an update around that time.<br />
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To all my readers: Hope you have a fabulous Christmas with your loved ones and a Happy New Year!<br />
<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-46071092845010668342012-12-17T17:43:00.001-05:002012-12-17T17:43:34.120-05:00The Phoenix December 2012 issue...finally made it to my house!<br />
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so I of course scanned and uploaded it immediately! I wrote the article prior to surgery #2 and have been waiting (impatiently) every since I handed in my final copy! Very excited to share it with everyone :)<br />
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AND, my apologies for not finishing out my December IBD challenge. A very hectic schedule + being pregnant (and all the normal aches and pains that come with it) on top of being sick just was not a good mix!<br />
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Thanks again to my friend Michelle, who took the pictures of Alexis to include with the article! (check her out on <a href="https://www.facebook.com/columbusohiophoto?fref=ts" target="_blank">facebook!</a>)<br />
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<br />
Here is the text version of my article, just in case you wish to read, but are having problems with my uploads:<br />
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>Alexis was diagnosed
with Ulcerative Colitis in August of 2010. She was three years old. I had never heard of the disease, and was
very confused when the Doctor explained that it was a “chronic” illness. How
does something like this happen to someone so young? She’s never even had an
ear infection, but she has a badly inflamed colon? In my mind, I had imagined
the colonoscopy coming back clean, and a round of antibiotics would clear up
her issues. I never thought I would have
a sick child. As a mother, I was angry.
My husband and I shared the diagnosis right away with other family
members and friends. Most had never heard of Ulcerative Colitis and immediately
paired it with a form of IBS. I can’t tell you how much that bothered me! <o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> The
next few weeks consisted of getting Alexis on a routine with her medications.
Since she was so healthy up to that point in her life, she had very little
experience taking any kind of medication. Most days we had to hold her down and
force the medication down (and this took place several times a day!) During
this time, I researched constantly. I wanted to know if there were any new
advancements and I wanted to know what I could do to hopefully “cure” her. (I
was unaware that it was impossible to cure unless a colectomy was performed for
a good month believe it or not!) I felt that researching was my job, and I
logged hundreds of hours in front of the computer screen talking to other
parents and looking up various methods others used. I explained to anyone who
asked everything I possibly could about IBD in general. <o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> Alexis did fairly well on sulfasalazine for a good 2 years.
During this time she encountered several flares, but we managed them with a
round of steroids and she managed to bounce back. In December of 2011, Alexis
started having the worst flare we had ever encountered. We started her on another round of steroids
and after a few weeks, we noticed very little (if any) improvement. Eventually Alexis was hospitalized at
Nationwide Childrens Hospital in Columbus, Ohio. We were hopeful she would
return to normal with the help of i.v steroids, yet after 10 days she was still
just as bad as the day we were admitted. The team of G.I Doctors decided to
perform a colonoscopy and take a peek at her colon. I tried so hard to remain
hopeful, but I already knew what they were going to see. I could tell by just
looking at Alexis.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> Sure enough, the pictures came back and they looked
absolutely horrible. Her entire colon was inflamed and covered with ulcers. We
had 2 choices at that point in time. Start on Remicade (a biologic drug
administered every 4-8 weeks) or move forward with the colectomy. At the time,
Alexis had just turned 5 and I couldn’t imagine putting her through such a
tough procedure. But on the other hand,
I had read about Remicade prior and the long list of side effects scared me to
death. How was I supposed to make such a tough decision? I couldn’t believe we
were at this point, so soon after being diagnosed. My husband and I talked about it, and I spoke
with the team of Doctors, and we agreed to give Remicade a fighting chance. I
was (once again) hopeful. I just wanted to see my little girl better.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> The next few months included several blood transfusions as
well as Remicade infusions (at the max dose) every 4 weeks. The medication
helped to an extent, but she needed it way too often and we still weren’t able
to pull her into full remission. During this time, I knew I needed to make a
decision about the surgery. I would wake up some days and feel like it was
exactly what we needed to do. Then I would think about it, and the thought of
sending my daughter off was terrifying and I would change my mind. I wanted the
Remicade to work so badly. We met with
Alexis’ gastroenterologist, and I explained to him exactly how I felt. After discussing her case with the rest of
the GI team, they were all in agreeance that we should move forward and have
the colectomy. I was no longer in
control of the decision, it had to be done.
I was scared, but I was also so happy that I no longer had to think
about whether or not to go through with the colectomy or not. I know it seems silly, but it put me at ease
and at peace with what was going to happen.
I immediately started researching and calling manufacturers requesting
samples. I knew that this entire ordeal
was going to be tough, so I wanted to be as prepared as I could possibly be. I
talked to many parents of children with ostomys and one parent suggested
getting in contact with the makers of Gastronaut puppets. Not only did they ship Sally for free to
Alexis, they also sent me a book called “Unwanted Baggage: A Comprehensive
Introduction Surgical Ostomies”. It helped answer so many questions I didn’t
even realize I had. The puppet did wonders for Alexis. She was so proud of Sally
and took her everywhere. Alexis wasn’t afraid to tell people about her
impending surgery, and I would like to think Sally played a huge role in that.
Alexis and I discussed Sally’s bag and her ostomy quite often, and she was
excited to get “rid” of her Ulcerative Colitis for good. <o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> The nerves however came on full force the days leading up
to the surgery. I knew what to expect, but not knowing how Alexis would react
once it was all said and done that really bothered me. What if she resented me
for doing this to her? What if she really had Crohns? What if there were
complications? You can only prepare yourself so much. I knew that if we
continued on the track we were on, things were never going to get better. We
were going through with the procedure for all of the right reasons. I let go of
all my fears and anxiety and did everything I could to make sure Alexis was
comfortable and prepared. <o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> On July 11th 2012, Alexis and I packed up several bags and
went off to the hospital. I will say that the bowel prep was probably the
hardest thing she had to go through the entire week she was in the hospital.
The nurses placed a tube down her nose that lead down to her stomach and fed
her several gallons of some sort of mixture that would “clean her out”. It was
very traumatic for Alexis, and I had no idea that it would be done like that.
It is upsetting not knowing exactly what it going to happen beforehand. I was
new to the surgery scene, so I didn’t even think to ask what kind of prep was
going to take place. But, we made it through it through the night, and we were
woken up around 7 am the next morning to prepare for the colectomy.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>Around 930 on Thursday,
the OR called for Alexis. Reality immediately set in. The nurses rolled her
down to the OR prep center. They started hooking her up to O2 sensors, gave her
additional iv fluids, medication for her to relax and the surgeon and
anestheologist came in and talked to my husband and I through what was about to
happen. Everything that happened between explaining and dragging her into the
OR room was a complete blur. All I know is that once they took her down the
opposite hallway of the waiting room, I felt as if my world was crashing down
all around me. <o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>During the waiting
period while Alexis was in surgery, I couldn’t even describe any type of
emotion I felt because I didn't feel anything. I was just lost. I napped and
stared at the clock until our families arrived. The surgery itself only took
about 3 hours once they got started. Originally we planned to do a 2 step procedure
where they would remove her colon, create the ileostomy and the jpouch in one
procedure and then reverse the ileostomy and connect the j pouch in the second.
However, due to her inflammation, blood levels being so out of whack and the
doctor not being 100% sure she has Ulcerative Coltis versus Crohns, he decided
that the 3 step would be more beneficial. So we will be going back for
procedure #2 in a few months as long as the pathologist confirms that it is UC
in her colon (as the Dr confirmed there was NO inflammation in her small
intestines he could see! -which would indicate Crohns) where they would create
the j-pouch and then procedure #3 would be done a few months after that where
they would reverse her ileostomy (basically close it up) and attach her pouch
to the small intestines. This would give her the ability to hold stool and she
would look and feel more normal! The j pouch is not a guarantee, but we are
hoping that it is managed well and she can keep it permanently.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>Once the surgeon came
out to tell me how well Alexis did, I was over the moon happy, and the weight
felt like it fell off my shoulders almost immediately. I felt like I could
breathe again. She still had another hour to go in recovery, so we went to her
room to wait for her arrival. The minutes seemed to drag on for hours on end,
and I kept looking out the window to see if I could catch a glimpse of her
being rolled down the hallway. After nearly an hour and a half wait, she
finally showed up.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>I had butterflies in my
stomach. I was so happy to see her! She will still so highly medicated that she
would only wake up for minutes at a time, but she knew she had surgery and she
was happy to see all of her family members supporting her. The nurses were busy
taking vitals, checking incisions and making sure she was doing okay, and I
felt the immediate rush of emotions coming on. Her stoma was huge, the tube
that now came out of her nose was even bigger than before , she was begging for
water (that she was denied over and over again) and I really just couldn't
believe that after only 2.5 years of battling Ulcerative Colitis, this is where
we ended up. We were just THAT lucky.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>The rest of the day is
a blur to me. But I do recall she slept (alot) and itched herself nonstop (side
effect of her pain medication), but she still looked better than she has in a
really long time. (Believe it or not) But she made it through like a trooper,
and was in no pain at all.</b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>The morning following
her surgery they took her off of the continuous drip of morphine in order to
help wake her bowels and they put her on a pump. They removed her catheter
shortly after, and then she walked about 10 feet or so from her room and
managed to stay awake for a few hours at a time. Less traumatic than I had
envisioned for barely being 24 hours out from surgery. Just 48 hours after
surgery she was able to cut her pain med intake in half and she was able to get
out of the room and walk! She walked all the way to the hospital play room that
day, and we were all so proud of her. <o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>Since Alexis did so
amazing post- op, we were prepared to leave at just 5 days post op! One
requirement prior to discharge was meeting with a WOC nurse to go over how
exactly we would change Alexis’ bag and how to re-order supplies. I have no
complaints regarding the entire experience we encountered, EXCEPT for this
meeting with the nurse. Alexis was fitted with a 12 inch adult sized bag from
Holister. I am sure every single one of you reading this is thinking “How
absurd!” and I agree, one hundred percent. At the time, my husband and I had no
idea what we were doing and decided to put all of our trust into everything she
said. Well, to make a long story short she did a very poor job informing us as
to what products were out there. We were under the impression we had no choice
but to use a bag that basically hung down to my daughters knee, and the only
product we left knowing about was the skin barrier powder for broken skin.
Needless to say, we had a lot to learn on our own.<o:p></o:p></b></span></div>
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<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b> But, other than that small bump along our journey, things
have been great. I don’t regret one bit the decision I have made for Alexis.
She is finally free to act like a 5 year old, and she is enjoying it pain free.
My family and friends are thrilled with how well Alexis is doing, and she was
able to start Kindergarten on time with her fellow peers. <o:p></o:p></b></span></div>
<span style="font-family: Tahoma, sans-serif; font-size: 12pt; line-height: 115%;"><b>We have scheduled her second surgery for October 4<sup>th</sup>,
2012 and the final take down will be done towards the end of the year. We are
hopeful things will go just as smoothly! We are expanding our family in March
2013, so it was important to me to have everything done prior to that date. I
know life will be hectic with a newborn, and I want to make sure I can be right
by Alexis’ side one hundred percent through this entire process. I talk to her
about her upcoming procedures all of the time, and if she ever told me she
wanted to wait (even if it was long term) I would do it for her. I think it’s
very important to let her have a voice, and opinion on her medical issues. My
family and I are very grateful to the staff at Nationwide Childrens Hospital in
Columbus, Ohio. Especially to Alexis’ gastroenterologist Dr. Brendan Boyle who
did everything he could to save Alexis’ colon and also the amazing surgeon, Dr.
Benedict Nwomeh, who made Alexis feel better when nothing else could.</b></span><br />
<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-43029746732921805442012-12-04T12:50:00.001-05:002012-12-04T12:50:22.345-05:00Day Three!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi24henTVlVbPgMgSgi2CBYUZDuTfsL87vSAAKZfbDcmBzZjjSVSr3-q7VS1927GDRsCyTzqOdMbuYNTj4_lD2vXgdTlQa2JqDFJ9cgyMkgBoK41n4aDC-sMw7VaCguAGxzFM5Ln7i9_DkZ/s1600/IMAG0644-1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi24henTVlVbPgMgSgi2CBYUZDuTfsL87vSAAKZfbDcmBzZjjSVSr3-q7VS1927GDRsCyTzqOdMbuYNTj4_lD2vXgdTlQa2JqDFJ9cgyMkgBoK41n4aDC-sMw7VaCguAGxzFM5Ln7i9_DkZ/s320/IMAG0644-1.jpg" width="180" /></a>I may be posting a day late, but I still participated! I don't have much purple in my closet, so I went with the next best thing-- nail polish! The picture makes it look a weird color, but its a pretty vibrant shade of purple, surely enough to grab peoples attention! ;)<br />
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Hope you all are having a good week so far! I am hoping to compile a blog full of some of my favorite #PURPLECHALLENGE pics within the next day or so!<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-30076204851894246342012-12-02T20:06:00.000-05:002012-12-02T20:40:30.012-05:00Day TWO!#PURPLECHALLENGE<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiML4vdy8fV6Fv16uV6Z9nUIYHsu3DR-AcDqisuA8M4PD1e7PC21Nxjih5icW0GTSjawA41qxZ8YWj_2-Z5_5Fp0O21jNaSeEZ1HvQwG-M4jNdJd6w_65ZkH8ZmD3ObjOyud8gC1BgpCqEK/s1600/IMAG0640-1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiML4vdy8fV6Fv16uV6Z9nUIYHsu3DR-AcDqisuA8M4PD1e7PC21Nxjih5icW0GTSjawA41qxZ8YWj_2-Z5_5Fp0O21jNaSeEZ1HvQwG-M4jNdJd6w_65ZkH8ZmD3ObjOyud8gC1BgpCqEK/s400/IMAG0640-1.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alexis wearing her 2012 CCFA *Team Alexis* wrist band!<br />
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<a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/14292_390525334357489_1651858548_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/14292_390525334357489_1651858548_n.jpg" width="255" /></a><a href="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/154455_390522614357761_2087193842_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/154455_390522614357761_2087193842_n.jpg" width="247" /></a></div>
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<a href="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/18701_391047137638642_1090261085_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/18701_391047137638642_1090261085_n.jpg" width="228" /></a></div>
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Obviously the last 3 are not part of the #PURPLECHALLENGE, but I wanted to share... look how healthy Alexis looks! Hard to believe less than 6 months ago we were dealing with blood infusions, Remicade and extended hospital stays!</div>
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Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-24204411792863269492012-12-01T16:18:00.000-05:002012-12-01T16:18:38.657-05:00Day ONE#PURPLECHALLENGE<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyT7fUC0Fmk5FVneva_TFT-fSw1Kwz37iihVdGvdfjDjMJc3cHSJNAFMmkw1qj4qnSSv_dDBMe3MMRIoGV3DwsqQkYrmLZ_iz6wr_ye6ySPn7ANh3DS49yPmHJW7mn4OWqdOkNRwo0oNMJ/s1600/IMAG0634.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyT7fUC0Fmk5FVneva_TFT-fSw1Kwz37iihVdGvdfjDjMJc3cHSJNAFMmkw1qj4qnSSv_dDBMe3MMRIoGV3DwsqQkYrmLZ_iz6wr_ye6ySPn7ANh3DS49yPmHJW7mn4OWqdOkNRwo0oNMJ/s320/IMAG0634.jpg" width="320" /></a></div>
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A purple ribbon on my wrist. I get asked all the time what the ribbon is for, so it has been a great way to spread awareness!!Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-3106462008051654972012-11-30T11:14:00.006-05:002012-11-30T11:25:38.709-05:00IBD Awareness week starts tomorrow!<b><u style="background-color: black;"><span style="color: white;">I copied this from Caringforcrohns.com!</span></u></b><br />
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<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black; color: white;">Crohn’s & Colitis Awareness Week starts tomorrow and we are so excited to celebrate it with everyone in our IBD family!</span></div>
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<span style="background-color: black; color: white;"><br /></span></div>
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<span style="background-color: black; color: white;"><span id="more-191"></span><b>What is Crohn’s & Colitis Awareness Week?</b></span></div>
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<span style="background-color: black;"><span style="color: white;">As a result of a</span><span style="color: #414141;"> <a href="http://www.govtrack.us/congress/bills/112/sres199/text" style="color: #6c8c37; text-decoration: initial;" target="_blank">federal bill</a> </span><span style="color: white;">introduced by </span><a href="https://twitter.com/SenatorReid" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Harry Reid</a><span style="color: #414141;"> </span><span style="color: white;">(D-NV) and</span><a href="https://twitter.com/AnderCrenshaw" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Andrew Crenshaw</a><span style="color: white;"> (R-FL-4) passed in 2011, Congress declared December 1-7 to be Crohn’s and Colitis Awareness Week to educate Americans about the diseases and encourage people to join in the effort to find a cure for IBD. This resolution was passed in thanks to some great Senators and Representatives who cosponsored it including:</span></span></div>
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<li><span style="background-color: black;"><a href="https://twitter.com/SenThadCochran" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Thad Cochran </a>(R-MS)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/SenJackReed" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Jack Reed</a> (D-RI)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/SenGillibrand" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Kirsten Gillibrand </a>(D-NY)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/PattyMurray" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Patty Murray</a> (D-WA)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/ChuckSchumer" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Chuck Schumer</a> (D-NY)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/MariaCantwell" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Maria Cantwell</a> (D-WA)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/SenatorBurr" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Richard Burr</a> (R-NC)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/SenFeinstein" style="color: #6c8c37; text-decoration: initial;" target="_blank">Senator Dianne Feinstein</a> (D-CA)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/RushHolt" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Rush Holt</a> (D-NH-12)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/RepPeteKing" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Pete King</a> (R-NY-3)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/TomLatham" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Tom Latham</a> (R-IA-4)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/CarolynBMaloney" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congresswoman Carolyn Maloney</a> (D-NY-14)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/RepMcGovern" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Jim McGovern</a> (D-MA-3)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/Jim_Moran" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Jim Moran</a> (D-VA-8)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/cbrangel" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Charlie Rangel</a> (D-NY-15)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/RepDennisRoss" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Dennis Ross</a> (R-FL-12)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/tiberipress" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Pat Tiberi</a> (R-OH-12)</span></li>
<li><span style="background-color: black;"><a href="https://twitter.com/Rep_Adam_Smith" style="color: #6c8c37; text-decoration: initial;" target="_blank">Congressman Adam Smith </a>(D-WA-9)</span></li>
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<b style="background-color: black;"><span style="color: white;">Why celebrate?</span></b></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black; color: white;">Crohn’s and Ulcerative Colitis impact millions of people nationwide. We don’t have to tell you how debilitating these two incurable diseases can be- the cramping, the diarrhea, the constant urgency, the food limitations, and so on.</span></div>
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<span style="background-color: black; color: white;"><br /></span></div>
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<span style="background-color: black; color: white;">Crohn’s & Colitis Awareness Week is celebrated to make people aware of these diseases and raise money to bring us close to finding a cure.</span></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<b style="background-color: black;"><span style="color: white;">How to celebrate this year</span></b></div>
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<span style="background-color: black; color: white;">A group of Crohn’s and Ulcerative Colitis bloggers are coming together to celebrate this year with a Wear Purple Challenge.</span></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black; color: white;">From December 1-7, we are going to wear an item of purple in honor of Crohn’s & Colitis Awareness Week. Whether it’s a shirt, bracelet, pants, socks, nail polish- it doesn’t matter as long as it’s visible and purple!</span></div>
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<span style="background-color: black; color: white;"><br /></span></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black; color: white;">Each day, we are going to take a picture and post it on our blogs, Facebook, & Twitter to share with our followers to show our support of the Crohn’s & Colitis Awareness Week.</span></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<em><b style="background-color: black;"><span style="color: white;">We are challenging all of you to join us!</span></b></em></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black; color: white;">Wear purple and take a photo of it each day and post it to your blog, Facebook, or Twitter with the hashtag <strong>#PurpleChallenge</strong>. At the end of the week, we’ll compile all the photos on our blogs to share with everyone.</span></div>
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<b style="background-color: black;"><span style="color: white;">Want to celebrate but can’t participate in our challenge?</span></b></div>
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<span style="background-color: black;"><span style="color: white;">Check out the</span><span style="color: #414141;"> </span><a href="http://www.ccfa.org/news/crohns-colitis-foundation-1.html" style="color: #6c8c37; text-decoration: initial;" target="_blank">Crohn’s and Colitis Foundation of America’s website</a><span style="color: white;"> for ideas- they have some great one’s listed for ways to participate in the week.</span></span></div>
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<span style="color: purple;"><strong style="background-color: black;">Happy Crohn’s & Colitis Awareness Week!</strong></span></h2>
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<span style="background-color: black;"><span style="color: white;">Rebecca </span><span style="color: #414141;">(</span><a href="http://www.caringforcrohns.com/" style="color: #6c8c37; text-decoration: initial;">www.caringforcrohns.com</a><span style="color: #414141;">, </span><a href="http://www.twitter.com/caringforcrohns" style="color: #6c8c37; text-decoration: initial;" target="_blank">@caringforcrohns</a><span style="color: #414141;">)</span></span></div>
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<span style="background-color: black;"><span style="color: white;">Sarah</span><span style="color: #414141;"> (</span><a href="http://www.myjourneywithcrohns.com/" style="color: #6c8c37; text-decoration: initial;">www.myjourneywithcrohns.com</a><span style="color: #414141;">, </span><a href="http://www.twitter.com/SarahChoueiry" style="color: #6c8c37; text-decoration: initial;" target="_blank">@SarahChoueiry</a><span style="color: #414141;">)</span></span></div>
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<span style="background-color: black;"><span style="color: white;">Melissa </span><span style="color: #414141;">(</span><a href="http://www.detouredfashion.blogspot.com/" style="color: #6c8c37; text-decoration: initial;" target="_blank">www.detouredfashion.blogspot.com</a><span style="color: #414141;">, </span><a href="http://www.twitter.com/allbluezoo" style="color: #6c8c37; text-decoration: initial;" target="_blank">@allbluezoo</a><span style="color: #414141;">)</span></span></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black;"><span style="color: white;">Louise</span><span style="color: #414141;"> (</span><a href="http://www.youngcrohns.tumblr.com/" style="color: #6c8c37; text-decoration: initial;">www.youngcrohns.tumblr.com</a><span style="color: #414141;">, </span><a href="http://www.twitter.com/sapphire20" style="color: #6c8c37; text-decoration: initial;" target="_blank">@sapphire20</a><span style="color: #414141;">)</span></span></div>
<div style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.200000762939453px; padding: 0px 0px 18px;">
<span style="background-color: black;"><span style="color: white;">Kristen</span><span style="color: #414141;"> (</span><a href="http://www.kla-yeayouknow.tumblr.com/" style="color: #6c8c37; text-decoration: initial;">www.kla-yeayouknow.tumblr.com</a><span style="color: #414141;">)</span></span></div>
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<span style="background-color: black;"><span style="color: white;">Laura</span><span style="color: #414141;"> (</span><a href="http://www.twitter.com/Ellee_hogan" style="color: #6c8c37; text-decoration: initial;" target="_blank">@Ellee_hogan</a><span style="color: #414141;">)</span></span></div>
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<span style="background-color: black;"><span style="color: white;">Tara </span><span style="color: #414141;">(</span><a href="http://caringforcrohns.com/2012/11/30/join-us-for-a-crohns-colitis-awareness-week-purplechallenge/www.tarablackburn.blogspot.com" style="color: #6c8c37; text-decoration: initial;" target="_blank">www.tarablackburn.blogspot.com</a><span style="color: #414141;">)</span></span></div>
Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-50650191857377054262012-11-07T17:56:00.004-05:002012-11-07T17:56:53.551-05:00Update!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/23954_3353826144133_121273529_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://sphotos-b.xx.fbcdn.net/hphotos-ash3/23954_3353826144133_121273529_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alexis and her little sister, Kyleigh, on begger's night!</td></tr>
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Alexis' FINAL j-pouch surgery will be Thursday January 3rd, 2013.<br />
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Less than 2 months to go and she will be ostomy free.<br />
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So hard to believe!<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-49876279816181365072012-11-03T10:58:00.000-04:002012-11-03T11:05:16.285-04:00ThankfulWith it being the month of Thanksgiving-- I have realized that I am SO thankful for the great team of Doctors Alexis has been blessed with. They have been with us through the good and the bad. It is bittersweet that we are no longer required to see Alexis' <a href="http://www.nationwidechildrens.org/brendan-m-boyle" target="_blank">GI Dr</a> on a regular basis. He kept such a close eye on Alexis, and got to know her so well. He was the first male Doctor Alexis EVER let examine her (and felt okay with it!). We lost our <a href="http://my.clevelandclinic.org/staff_directory/physician_name_search.aspx#17310" target="_blank">pediatrician</a> a few months back, and her and I both cried when she told me she was moving to the Cleveland Clinic. She had been with my family since Alexis was BORN! She also shared with me her own mothers struggle with UC, and I believe that is when we REALLY bonded. If I could, I would drive to Cleveland every year for my children s well visits. When you have a sick kid, you grow so attached to the Doctors...whether you like it or not.<br />
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I can't even begin to show my gratitude to the <a href="http://www.nationwidechildrens.org/benedict-c-nwomeh" target="_blank">surgeon</a> who preformed such a major surgery on Alexis' tiny body. She was a mess prior to her colectomy and within days of the operation, we had our wild 5 year old back. He truly gave my family our life back.<br />
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Of course my list of things that I am thankful for is more than a mile long, but these Doctors are on the top of my list. I can only hope they realize just how much of an impact they make on all of their patients and their families!<br />
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<br />Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-90941915828534230942012-10-27T16:39:00.001-04:002012-10-27T16:39:13.003-04:00It's been so long...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc6/266294_4681515555077_1959075289_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc6/266294_4681515555077_1959075289_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Day after her operation</td></tr>
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..and I apologize! With the Phoenix article on Miss Alexis coming out soon, I have got to make sure I update regarding her latest surgery. I am hoping her story reaches thousands of people-- more so those parents who are in the beginning stages of the surgical side of treating their child's IBD. I still manage to get an email about once a week from parents who stumbled across my blog . It's overwhelming hearing them compare our feelings and listening to them say things that <i>I too</i> had said myself in the beginning of all of this.<br />
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So, again.. my email address is tara.n.blackburn@gmail.com. I know I posted it a few entries back, but I wanted to post it again for any new people who come across my blog.<br />
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So, here we go.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-a.xx.fbcdn.net/hphotos-ash4/194097_4682385856834_1166474644_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash4/194097_4682385856834_1166474644_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My husband reading Alexis her cards</td></tr>
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Prior to D-Day, I had spoken with Alexis' surgeon and decided to be apart of a study he was conducting. Basically, some surgeons think a bowel prep is necessary, while others do not. The bowel prep itself is awful. NG tube down their nose that pumps their tiny bellies full of medication that eventually flushes them completely out. I remember the nurses bringing in 2 gallons of this crap, and I was flabbergasted. "Your really going to use ALL of that?!" The hours following that statement were almost as bad as the surgery itself. I went through the details of the actual prep in one of my first few blog posts.. but it was no fun. I was praying that we would be selected to come in on the day of surgery with absolutely no bowel prep (well, no eating after midnight.. but that's easy!). And, we got exactly what we had wished for: no prep! Let me tell you.. it made the thought of Alexis' going into surgery a million times easier. No sense in terrorizing ANY more than necessary.<br />
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We arrive at Children's Hospital around 6:30 am on 10/4/12. My husband, Alexis and I head straight up to the surgical wing and wait an hour to be called back to the prep room. Our surgeon came in, went over everything we needed to know (and answered all 5,000 questions I had) then the anesthesiologist came in and went over all his information. Shortly after, Alexis was wheeled away. Again, I was left with a pit in my stomach and had to fight back the tears. It was hard, as letting your child go into ANY operation is scary, but I felt more comfortable than I did the first go round.<br />
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This operation was scheduled to take roughly 6 hours or so. Great. TWICE as long as the first one. I felt like I barely made it through the last time, I didn't know how I would manage to stay sane for that long. Kyle and I went off to the cafeteria for some breakfast. We made it back up and waited (and napped) and waited until finally her surgeon came out.<br />
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/522825_4699024352786_1852206311_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/522825_4699024352786_1852206311_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">5 days post op</td></tr>
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Everything went according to plan, and he even made it out in an hour less than expected. Alexis was doing great and they had absolutely NO complications with her surgery. He explained to us that he moved Alexis' ostomy higher up in the small intestine and she now had a diverting loop end ileostomy instead of her end ileostomy. I would go into detail to explain the differences, but I tend to use random medical jargon that most people don't understand (unless you are a fellow ostomate!) I am hoping to find a picture to include in this entry as seeing it with your own eyes tends to make more sense. Her ostomy previously was thicker, and stuck out about 1 inch from her stomach, now it is about .5 inches in diameter and sits almost flush with her skin. Her surgeon went through all of the same incisions so no additional scarring. I can almost guarantee that when she becomes an adult, they will be barely visible! They are already pretty small in size. Scarring may mean nothing to you or I, but I don't want her to feel uncomfortable as she gets older if she wants to wear bikinis etc etc. She is beautiful all the way around tho, so hopefully some scarring doesn't bother her.<br />
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Back to the surgery..<br />
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Alexis was pretty medicated on the day of the operation and the day after. It seems all she did was sleep. I was grateful because I can only imagine how uncomfortable she had to of felt. She was on automatic suction, and had a catheter-- so she didn't move out of her bed until about 2 full days post op. This operation was twice as long as the first, and it seemed to take twice as long for the anesthesia to really wear off. I made sure she remembered to push her pump pretty often (she was also on a continuous drip) I was doing everything in my power to ensure the pain wasn't coming through.<br />
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Recovery wise, things took alot longer than I had anticipated. I went into this surgery, expecting the recovery process we had during the first operation. Alexis went in on a Thursday and released on a Monday morning. Her bowels woke up almost right away and her pain was so well managed she was only on a pain pump the first 24 hours or so. This time around, Alexis had an NG tube hooked up for a week, as well as the pain pump. Her bowels woke up post op day#6 and the NG was removed on day 7 in the morning (thank goodness, otherwise we would have had to do tube feedings) I tried so hard not to rush the recovery process, but honestly, I was going a little stir crazy..and I missed having my entire family under one roof! It was rough on all of us, however, looking back I know we were right where we needed to be.<br />
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Now, of course we had to run into some problems. Alexis had been on a strong antibiotic after surgery and she developed a yeast rash ALL over her backside. On top of that, she started running fevers out of no where. We were concerned of infection so the Drs ordered a fever workup which included: a chest xray (to check for pneumonia), a urine sample (to check for a UTI (very common after having a catheter placed) and blood samples to check her white blood cell count (which is an indicator for an infection). Everything came back normal except for her blood samples, but her wbc was only slightly elevated.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/69156_4702585921823_894212546_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-a.xx.fbcdn.net/hphotos-prn1/69156_4702585921823_894212546_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Infected IV site. Notice the burns? !</td></tr>
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Then, a nurse came in to administer IV Tylenol via an iv port on Alexis' left hand. She had 3 ivs placed during surgery and the were only constantly using 1. Alexis was throwing a fit when they flushed it, however the nurse assured me everything was fine since it "flushed okay". So she hooked Alexis up to her medication, and left the room. Alexis was very upset when the nurse left and I went and closely inspected the site. (it was under the clear plastic bandages-- so I didn't have a good visual of it.. I was mainly checking to make sure her arm wasn't swelling!) No swelling. I could see around the iv tho, and it looked pink and I just knew something was wrong. I called the nurse in and told her to remove the iv. We did and sure enough, once everything was removed, you could see that the iv had been bad (and who knows for how long since it hadn't been used!) Over the next several hours, the injection site filled with puss, her arm swelled up and red splotches covered about 80% of her lower arm, and her arm itself was very warm to the touch. She also developed blisters (tissue underneath had burned, and it made its way to the surface). They were worried that she had a possible blood clot, but the ultrasound crew was so backed up, we were forced to sit and wait. I placed a warm cloth over her arm, and over the next several hours, the redness and swelling went away! A huge welt appeared out of no where the next day too. We continued with the warm compresses, and she was started on another round of antibiotics, and the fevers finally went away for good. I was very angry this happened, but it was a relief to know that the infection wasn't on the inside. Finally felt as if we were making real progress and we could work on getting out of there!<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/487081_4705558276130_1871408755_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/487081_4705558276130_1871408755_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">6 days post op. Craft time with little sis!</td></tr>
</tbody></table>
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I really wish I would not have waited so long to update. I am jumbling my brain trying to remember certain details, and I am at a loss. So for now, I think I will call it quits. As I remember, I will come back and edit, or post more details in a later blog. Alexis' surgeon wanted to preform her take down 6-8 weeks from this operation, however, I requested that we hold off until the beginning of January. She has already missed a ton of school, the holidays will be upon us (as well as her birthday and her party!) and my husband and I just can't afford another week of no income.<br />
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My husband has an awesome job, and makes more than enough to allow me to stay home with our kids. However, there is no paid time off. He was forced to take an entire week off a few weeks prior to Alexis' surgery, and then he took a week off to be by Alexis' side after the operation. We pretty much blew through our savings during that time. In no way are we struggling, things are just <i>alot </i>tighter right now. It stresses me out because I am used to having a cushion to fall back on, and being so close to the holidays and all.. doesn't help. But we will make it through, Christmas will be amazing, as well as Alexis' SIXTH birthday. Financial woes just seem to follow anyone who is struggling with a chronic disease. I pray that what we are doing for Alexis now, secures her future even more. I hate the thought of her dealing with this for the rest of her life.. I don't ever want her to wonder "How am I going to pay for bills and/or the things I need on top of medication and/or surgical operation". I would give up everything I had before I let that happen.<br />
<a href="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/76254_4732721395191_1124887424_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://sphotos-a.xx.fbcdn.net/hphotos-ash3/76254_4732721395191_1124887424_n.jpg" width="320" /></a><br />
Other than that, things have been going great. Alexis is 23 days post op today, and things are great. She is back in school and back to learning her dance routines in drill team! We also learned that we are having ANOTHER baby girl in March, and although I had hoped for a boy.. I am extremely excited. :) Alexis can't wait to hold her and she is extremely excited that she will always be the "biggest" sister :) Life has thrown my family quite the curve ball, but we are back on track now. Once we get Alexis through this next operation, I pray for nothing but smooth sailing and distant memories of IBD after that.<br />
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Thanks for checking in. XOTarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-29162132572069167662012-10-09T21:28:00.004-04:002012-10-09T21:28:58.837-04:00Post Op Day 5 (I think..?!)My days seem to be running into each other!!<br />
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I promise I will update as soon as I find the time. Things have been hectic, and honestly when I am not tending to Alexis-- I am exhausted and just want to sleep. She is doing better and we are hoping things start to improve for her. I have ALOT to write about, so keep checking back!<br />
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Thanks for all of the love, thoughts and support <3 p="p"><br />
<br /></3>Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com1tag:blogger.com,1999:blog-2472071696874163649.post-58736668042769301952012-09-27T12:20:00.001-04:002012-09-27T12:20:13.486-04:007 days..so the countdown begins...<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/376406_4642293934561_1954057451_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc7/376406_4642293934561_1954057451_n.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Alexis right before her first practice!</td></tr>
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again.<br />
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Seems surreal that we are getting ready to go down this journey again! Alexis is doing so well that I wish we could just wait. Life with an ostomy isn't that bad. But this is what she wants, so we are moving forward.<br />
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Alexis had her first drill team practice last night. She did so good! She was happy to be out there and she seemed to be glowing with excitement the entire time!! She will miss out on a practice due to recovery time, but I am hoping I can at least get her there to watch (since it will be post op day 6--and if all goes well she should be out of the hospital!) I am hoping this is something she can stick with and keep up with over the years!<br />
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My nerves are starting to set in, but I am trying to keep myself busy. I have a TON of laundry I would like to get done within the week!<br />
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and as always, expect more updates in the next week (even more the days following her surgery!)Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com2tag:blogger.com,1999:blog-2472071696874163649.post-23562681366577592112012-09-18T11:29:00.000-04:002012-09-18T11:29:00.084-04:002 weeks.....away from surgery. I can hardly believe it.<br />
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<a href="https://sphotos-b.xx.fbcdn.net/hphotos-snc6/219367_4593250308501_2045410552_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://sphotos-b.xx.fbcdn.net/hphotos-snc6/219367_4593250308501_2045410552_o.jpg" width="320" /></a>Seems like its been forever since the initial creation of Alexis' ostomy, but in reality we just passed the 2 month mark. I am thankful for all of the progress we have made, all the medications we were able to give up and for my daughters health back. My only wish is to fast forward through these next few months and these next 2 surgeries.<br />
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Alexis' GI appointment went great. Dr Boyle was thrilled with how well she looked and ordered some routine labs to see how her body was maintaining. I explained the problem I discussed in my last post and he wasn't too concerned. He doesn't want to treat it with any type of medication and we will see how it goes after her next surgery. I was pretty happy about that!<br />
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Alexis finally got over a pretty rough cough/cold/sore throat viral type sickness (seriously, it seemed like everything rolled into one!) this past week. Her output turned very watery and I was pretty nervous about her becoming dehydrated since everything seemed to pass through her so quickly (more so at school since I couldn't monitor her) but we made it through with no problems whatsoever!<br />
<a href="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/48214_4593250908516_1129600440_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://sphotos-b.xx.fbcdn.net/hphotos-prn1/48214_4593250908516_1129600440_o.jpg" width="320" /></a><br />
Since my last post, Alexis enjoyed her first trip to the Renaissance Festival! She rode rides, enjoyed various attractions and had the energy to walk the entire time! We did have to make several trips to the restroom, but they were for me :) It was great! (check out the few photos I attached!)<br />
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The same day we went to the festival, we found out Alexis will be expecting ANOTHER sister! Three girls... hopefully I can keep my sanity ;)<br />
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One last thing: we will be signing Alexis up for Drill Team this week! How awesome is that?! She is so excited!! Practice starts in a week or so, I will keep you guys updated on how she does.<br />
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Thanks for checking in!Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com0tag:blogger.com,1999:blog-2472071696874163649.post-53550847756933103502012-09-13T09:40:00.001-04:002012-09-13T09:40:35.814-04:00Tomorrow...Will be Alexis' first follow up appointment with her GI Dr since before her surgery. I am very excited to see him and share just how great she is doing. For so long, I explained to him I couldn't nor did I want to put Alexis through such a dramatic surgery, but I am so happy we did. I know you have heard me say it over and over again, but I finally have my happy go lucky 5 year old back!<br />
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The only concern I will be bringing up to him is the discharge Alexis is having from her bottom (tmi, for most.. I am sure.. but those who are dealing with IBD know that poop talk is NORMAL and expected on a nearly every day basis!! :) !!) Her ileostomy obviously bypasses her rectum, however it is still a living organ and secretes mucus and whatnot. BUT, Alexis' has been bloody since surgery (few drops or so). Not bad AT all, and she only passes it every few days or so, but I am very curious as to how he will treat it. I am hoping it is only temporary as I was so happy to get her off all medications. But we shall see. I think he will be very pleased with her overall progress!!<br />
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This weekend we will be finding out the sex of the new baby, as well as taking a family outing to a Renaissance Festival. So exciting! For so long we had to stay clear of anything that didn't have a bathroom in a 3 second walking distance, so it will be nice to be able to go out and enjoy it! Alexis will be able to ride rides, eat whatever food she wants and just ENJOY herself! I am very excited :)<br />
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Well, I think thats all I have for today. I will update after our GI appointment for those of you who are interested in what he has to say!Tarahttp://www.blogger.com/profile/14364366549830409254noreply@blogger.com1