tag:blogger.com,1999:blog-2120081140561056228.comments2012-01-29T14:06:27.462-07:00Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.comBlogger263125tag:blogger.com,1999:blog-2120081140561056228.post-75052611082883590562012-01-29T14:06:27.462-07:002012-01-29T14:06:27.462-07:00Hi Faith<br /><br />My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a princess hero, beautiful trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. http://www.miraclechamp.webs.com I love it when people sign my guestbook. I was born with a rare life threatening disease, and other diagnosis.Jennahttp://www.miraclechamp.webs.comnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-604316717347142002011-05-21T16:59:47.228-06:002011-05-21T16:59:47.228-06:00HI Faith!<br />My name is Jenna and I came across your site. U are strong, determined and courageous fighter. U are a brave Warrior, Smilen Champ and an Inspirational Hero.<br />I was born with a rare life threatening disease.<br />www.miraclechamp.webs.comJennahttp://www.miraclechamp.webs.comnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-79510434543781659702011-03-25T11:44:13.166-06:002011-03-25T11:44:13.166-06:00The statistics are from a talk Dr. Puder gave about Omegaven. Is her direct bili at 3.8, or her total bili? Where have you tried to get her Omegaven? Have you spoken to Dr. Puder in Boston? I can help put you in touch with him if you&#39;d like.Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-1092103808062530272011-03-25T07:42:01.396-06:002011-03-25T07:42:01.396-06:00Can you help me find the source of the statistics you used about survival rates of TPN dependent kids? My daughter is 5 and has been 100% TPN dependent for 2 years now.. Her bill is currently sitting at 3.8, but we cannot access omegaven for her - she has confirmed TPN induced cholestasis, and severe clotting abnormalities related to both the liver issues and petal hypertension damaging her spleen.Allisonhttp://www.blogger.com/profile/11979663901755849304noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-23071478352714041722010-09-11T00:54:02.790-06:002010-09-11T00:54:02.790-06:00She has come so far, from that day. I would love to see a update how your days are going now, What big Faith is up to now. <br /><br />MarlisMrs Marhttp://www.blogger.com/profile/01628196336208629768noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-49980153639033175412010-07-19T14:34:51.170-06:002010-07-19T14:34:51.170-06:00I just wanted to say hi and tell you how happy I am to hear about your daughter! What a miracle. We have a little short gut miracle in our family too. You&#39;d never be able to pick him out of the bunch. He&#39;s healthy and we are so thankful!mini and brotherhttp://www.blogger.com/profile/14944602803772449353noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-60997452469561515002010-06-10T18:55:38.513-06:002010-06-10T18:55:38.513-06:00so great Faith is doing well!!! i hope she keeps it all up and gains some on the fancy milkshakes, although i would recommend whatever it is be minus the milk- few short gut kids i know can stand milk, although i do know some who do ok with yogurt, that would cover the probiotic angle too! good luck!!!<br />-Jackie K, NYAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-29102481493496039112010-06-02T14:27:56.385-06:002010-06-02T14:27:56.385-06:00She has gotten so far already, WOW, I remember when you first post on babyfit. She has been through so much over the last 1.5 years. <br /><br />Way to go Faith.Marlishttp://www.blogger.com/profile/01628196336208629768noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-39889701892346797172010-03-29T08:17:50.662-06:002010-03-29T08:17:50.662-06:00Glad to hair she is doing better now. Dosn&#39;t sound like the hopstial is too organized.<br /><br /> A tip to how to get her to drink out of a straw (well it worked with DS), i couldn&#39;t work out how do get my DD to drink from one till she was nerly 2. But with DS i cut the straw so it was only about 1-2cm high out of the water that way he only had to suck it up a lil bit. So cut the straw just to under where she can suck it up soon she will get if she keeps sucking she will get a drink. It only took DS a week to go from dinking from a cut straw to a normal one and he wan&#39;t even one yet.Marlishttp://www.blogger.com/profile/01628196336208629768noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-16118408547342255822010-03-22T20:49:12.497-06:002010-03-22T20:49:12.497-06:00Actually, it was the same dark green vomit she had when they suspected a bowel obstruction and did emergency surgery in December 2008... It ended up that she had a UTI and RSV, and because of her functional short-gut, basically her digestive system just shut down with the extra stress on her system. An actual update post will be coming soon!Raeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-70229465622042849522010-03-22T17:26:23.041-06:002010-03-22T17:26:23.041-06:00its obviously only stomach bile.. hopefully its not anything serious! fingers crossed.HardcoreHooliganhttp://www.blogger.com/profile/07311143484004547286noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-55220431773957780222010-03-13T22:04:24.687-07:002010-03-13T22:04:24.687-07:00I just wanted to send a comment, in Feb 2009 we found out our baby girl had gastrschisis when we were 12 weeks along. I found your blog in my research and have loved reading it. I hope Faith continues to strive! Thank you for you wonderful blog<br /><br />email Owen_lyla@yahoo.com<br /><br />Renee CoteAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-41131897877602989882010-03-02T18:37:14.559-07:002010-03-02T18:37:14.559-07:00Thinking about you tonight.Buffyhttp://www.blogger.com/profile/11783249235316097340noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-72946539786020032912010-03-02T08:26:06.195-07:002010-03-02T08:26:06.195-07:00Hi,<br /><br />I found your blog and wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding. <br /><br />Check out our web site at www.oley.org. For a good overview, click on the &quot;New to Oley&quot; button.<br /><br />We have some information on weaning a g-tube fed child to oral feedings that might be helpful for you posted at http://www.oley.org/tubetalks.html (scroll down to the bottom of the page).<br /><br />Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.<br /><br />Warm regards,<br />Roslyn Dahl<br />Oley Foundation Staff Member<br />dahlr@mail.amc.edu<br />(800) 776-OLEYoleyfriendshttp://www.blogger.com/profile/18351991584784311811noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-63672668106881718442010-02-27T09:16:45.169-07:002010-02-27T09:16:45.169-07:00Just popping in to say hello Raeanne, i try as much as i can to keep up with all the gastro babies and glad to see you are still keeping a feverish diary of posting.<br /><br />Dean<br /><a href="www.gastroschisis.co.uk" rel="nofollow">www.gastroschisis.co.uk</a>Deanhttp://www.blogger.com/profile/02345005881935122510noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-90219070712580674742009-11-19T00:26:57.533-07:002009-11-19T00:26:57.533-07:00Happy belated birthday, Faith!!Yuko, Randy, Max, and Kaihttp://psych.colorado.edu/~oreilly/max/max.htmlnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-25452302688529733552009-11-14T10:32:57.354-07:002009-11-14T10:32:57.354-07:00Happy Birthday Faith, you have come a long way and you look great. You truly are an inspiration for the short gut kids.Adriana's journey with short guthttp://www.blogger.com/profile/07220867750277011762noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-76544259332932395452009-11-13T10:28:20.768-07:002009-11-13T10:28:20.768-07:00Happy Birthday dear Faith! We are thinking of you today &amp; always. Hugs to you &amp; your family :)<br /><br />~Love from, Laura, Matt, Buddy, Dolce, Trio (our new 3-legged cat!), the birds &amp; the geckosLaurahttp://www.blogger.com/profile/12336098965115901482noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-38658506889816547542009-11-13T08:45:31.902-07:002009-11-13T08:45:31.902-07:00Happy Birthday Faith. <br /><br />I have been reading this blog since it first started. Thinking about you. Ever since you mother wanted that one US and found out. <br /><br />Will always think of you, from Vienna, austria.Marlishttp://www.blogger.com/profile/01628196336208629768noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-86344360030950816972009-11-13T06:53:52.423-07:002009-11-13T06:53:52.423-07:00Happy, happy birthday, Faith! Congratulations to your whole family for making it through this incredible year!<br /><br />with love from Boston,<br />Blaise, Erin and BenErinhttp://www.blogger.com/profile/08106624829472521023noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-54857698084415385752009-11-13T00:58:01.085-07:002009-11-13T00:58:01.085-07:00Happy Birthday, Faith! Have a blessed day. We are so glad you&#39;re here!!!!<br />All our love from the 4 of us in New Zealand!Colleen Stocknoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-89328365141777992992009-10-25T21:20:55.898-06:002009-10-25T21:20:55.898-06:00Faith is just an amazing little girl. :) I don&#39;t know if you remember me, but I&#39;m from the November mommies on BF (WendySue72). I hadn&#39;t seen you around there and came to check up on Faith. She&#39;s beautiful! <br />It&#39;s mindboggling the journey that you have had this last year. I hope that there is much good news and good times in your future. <br /><br />Hugs to you both,<br />Wendy<br />www.gotrubberwillstamp.blogspot.comWendy Hawkinsonhttp://www.blogger.com/profile/11430095967855433781noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-6790631365705921662009-09-21T10:06:58.068-06:002009-09-21T10:06:58.068-06:00and I thought our trips to Boston were tough....I just had to let you know that I totally sympathize with you over the &quot;what&#39;s wrong with her&quot; question... my husband and I always get that or the stares like they want to ask what is wrong... it is so hard not to be rude and say &quot;nothing&quot; especially when people are helpful or sincere...in my eyes she&#39;s perfectMom2Julianahttp://www.blogger.com/profile/05041363720531474125noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-38203217615712372012009-09-17T22:04:03.206-06:002009-09-17T22:04:03.206-06:00Gooooooooo Faith! You look AWESOME!!! Love you, Emma :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-10046877411381422072009-09-16T11:23:04.594-06:002009-09-16T11:23:04.594-06:00WOW! I am so excited for you and Faith. It is huge to get her central line removed. I am happy everything worked out for Faith. She looks so good, and is so big compared to the other pictures you had of her. Ana (mom to Adriana) from yahoo short gutAnonymousnoreply@blogger.com