tag:blogger.com,1999:blog-4834405754301414360.post8044633975385562037..comments2024-02-23T05:25:46.409-05:00Comments on Life Since Harlie: Feeling crappyChristyhttp://www.blogger.com/profile/12158503749591171395noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-4834405754301414360.post-67616348592926914862009-01-23T21:20:00.000-05:002009-01-23T21:20:00.000-05:00It is amazing. I try hard not to compare Maggie to...It is amazing. I try hard not to compare Maggie to her other sisters because well , she isn't. I hear you on the overwhelming feeling you get when it comes to surgeries. Maggie will be having surgery in Cincinnati in a few weeks so that means we have to uproot the family for it. But it will be so worth it. It will definitley be nice to be at a hospital where they treat many VACTERL kids. <BR/>There is a great group on the web called Parent 2 Parent ( www.parent-2-parent.org ) and they have tons of great advice for families with tube fed children. Lots of families there with children with just about everything you can think of so there is always someone there to answer your questions. <BR/>The one thing I do is pray to God for strength to get through each day and just take each day one step at a time. <BR/><BR/>www.caringbridge.org/visit/margaretreed1Tracyhttps://www.blogger.com/profile/00914318943504945933noreply@blogger.comtag:blogger.com,1999:blog-4834405754301414360.post-12516225235984992552009-01-23T21:14:00.000-05:002009-01-23T21:14:00.000-05:00Hi Christy, I'm so sorry you are having to go thro...Hi Christy, I'm so sorry you are having to go through all this. It just seems like so much for you to coordinate and so many doctors to deal with. Your idea of having a "medical professional" to give you advice sounds like just the thing you need. Just wanted you to know we're thinking of you and praying for you and Harlie and the rest of the family as well.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4834405754301414360.post-45044283836947974552009-01-22T13:34:00.000-05:002009-01-22T13:34:00.000-05:00Hugs my friend! The tide will turn in time. I'm so...Hugs my friend! The tide will turn in time. I'm so glad to read things are going well with the blenderized diet and that you've been able to eliminate the feeding pump! I was a little worried when you had the bad applesause experience but I'm thrilled it's going better. So now you can join me in singing it's praises. I wish more people would try it. PM your e-mail address if you want me to e-mail you my Excel file with the recipe.Susanhttps://www.blogger.com/profile/16092188894818322564noreply@blogger.comtag:blogger.com,1999:blog-4834405754301414360.post-14219979275822088432009-01-22T11:26:00.000-05:002009-01-22T11:26:00.000-05:00Hey Christy,I'm sorry you're feeling so overwhelme...Hey Christy,<BR/><BR/>I'm sorry you're feeling so overwhelmed. I just want you to know that I'm here for you.<BR/><BR/>{Hugs}<BR/>DonnaDonnahttps://www.blogger.com/profile/14372563554937434493noreply@blogger.comtag:blogger.com,1999:blog-4834405754301414360.post-63306547117300088702009-01-22T07:36:00.000-05:002009-01-22T07:36:00.000-05:00Christy, I am sure you will figure her surgery sch...Christy, I am sure you will figure her surgery schedule out and I know that Dr. Jonas will be of help..he will know how important the heart is in regard to her back and jaw. It is a shame she has to even go thru another surgery or more but she is a trooper and with the support of mom, dad, brothers and your families we will help you thru this.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4834405754301414360.post-59256400364800038752009-01-21T22:21:00.000-05:002009-01-21T22:21:00.000-05:00Hi! I can only imagine how overwhleming it must al...Hi! I can only imagine how overwhleming it must all be to you right now with having totry to figure out all the surgeries. My heart goes out to you. I did have a question though abou the blenderized diet though. My daughter has a feeding tube and nissen and has since she was 7 months old and we still have a terrible time with gagging. She doesn't vomit, thank God, cause her nissen has already been redone, but she does gag a lot. She is still on prevacid and reglan and they have even put her on an antibiotic to help stop the gagging. We are trying to get her to eat by mouth and actually have her set up to go to an intensive feeding program here soon, put I was wondering about the blenerized diet and how it works. We can not bolus her AT ALL!! It puts her in to respiratory distress immediately and she will gag like no tomorrow. If you could e-mail me and give me some more info on the diet I would appreciate it so very much. My e-mail is tigeress1026@hotmail.com thank you in advance!Jennifer and Elizabethhttps://www.blogger.com/profile/13875785810920022992noreply@blogger.com