tag:blogger.com,1999:blog-2120081140561056228.comments2013-09-24T12:51:56.909-06:00Faith's PlaceRaeannehttp://www.blogger.com/profile/03193166163053592310noreply@blogger.comBlogger267125tag:blogger.com,1999:blog-2120081140561056228.post-11091016426238843402013-06-11T12:33:53.708-06:002013-06-11T12:33:53.708-06:00Oh honey, I will be praying for her. Been thinkin...Oh honey, I will be praying for her. Been thinking about you guys all morning, thank you for the update :) Give her a big hug from me and you too :)<br /><br />RoxaneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-652104244533907942012-06-16T19:29:20.552-06:002012-06-16T19:29:20.552-06:00Hi Kate,
The first foods we fed Faith were thick f...Hi Kate,<br />The first foods we fed Faith were thick foods, like avocado and banana purees. She had swallowing/feeding issues, since she was tube-fed, and the thicker consistency foods were easier for her to manage. <br />Before she ate those foods, she did chew on some harder foods, like big strips of dried mango or dried papaya spears, in order to desensitize her gag reflex, so I guess those were her first introduction to eating and then once she managed them well we moved on to purees. She didn't actually eat the dried fruits though, just chewed on them to get used to the idea :) We also had the guidance of an occupational therapist when we introduced Faith to eating by mouth.<br />I hope that you figure out what works for your son!<br />RaeanneRaeannehttps://www.blogger.com/profile/03193166163053592310noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-72439096031455733332012-06-15T21:12:55.492-06:002012-06-15T21:12:55.492-06:00hi i found your blog through someone else's ga...hi i found your blog through someone else's gastro blog. My son was born with this diagnosis as well and is now 8 1/2 months. I have a question if you would be able to answer it. He is dying to eat real food and i am afraid to what will happen. I know its mostly trial and error but what were the first real foods you gave your precious angel? <br /><br />Happy Birthday by the way......way way late lol <br /><br />thank you <br />KateMy Sweet Angelshttps://www.blogger.com/profile/18093323773084929082noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-59200125881081512782012-06-15T21:11:26.737-06:002012-06-15T21:11:26.737-06:00This comment has been removed by the author.My Sweet Angelshttps://www.blogger.com/profile/18093323773084929082noreply@blogger.comtag:blogger.com,1999:blog-2120081140561056228.post-75052611082883590562012-01-29T14:06:27.462-07:002012-01-29T14:06:27.462-07:00Hi Faith
My name is Jenna and I came across your ...Hi 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!
My name is Jenna and I came across your ...HI 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 abou...The 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'd like.Raeannehttps://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 ...Can 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.Allisonhttps://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 t...She 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 Marhttps://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 a...I 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'd never be able to pick him out of the bunch. He's healthy and we are so thankful!mini and brotherhttps://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 i...so 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 whe...She 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.Mrs Marhttps://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't s...Glad to hair she is doing better now. Dosn'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'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't even one yet.Mrs Marhttps://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...Actually, 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!Raeannehttps://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 no...its obviously only stomach bile.. hopefully its not anything serious! fingers crossed.HardcoreHooliganhttps://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 fo...I 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.Thinking about you tonight.Buffyhttps://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,
I found your blog and wondered if you had hea...Hi,<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 "New to Oley" 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-OLEYoleyfriendshttps://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 muc...Just 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>Anonymoushttps://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!!Happy 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...Happy 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 guthttps://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 ...Happy Birthday dear Faith! We are thinking of you today & always. Hugs to you & your family :)<br /><br />~Love from, Laura, Matt, Buddy, Dolce, Trio (our new 3-legged cat!), the birds & the geckosLaurahttps://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.
I have been reading this b...Happy 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.Mrs Marhttps://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 ...Happy, 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 BenErinhttps://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 ar...Happy Birthday, Faith! Have a blessed day. We are so glad you're here!!!!<br />All our love from the 4 of us in New Zealand!Colleen Stocknoreply@blogger.com