tag:blogger.com,1999:blog-8578412255273545314.comments2023-01-17T08:41:46.563+00:00lilyinthepinkMette, Neil and Lilianhttp://www.blogger.com/profile/14766241856071292290noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-8578412255273545314.post-10195581457630958752017-06-27T11:52:38.754+01:002017-06-27T11:52:38.754+01:00Great to see your pictures of afternoon party. Rea...Great to see your pictures of afternoon party. Really happy to see that you all enjoyed the day. Now will surely have something great for my tea party that will be arranged at one of <a href="https://eventup.com/venues/san-francisco-ca/" rel="nofollow">San Francisco event venues</a>. Will surely do best arrangements for the day with help of my sister.benilhalkhttps://www.blogger.com/profile/04371214901920234920noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-52414086219788500942013-11-01T20:48:57.828+00:002013-11-01T20:48:57.828+00:00Sorry i am anonimous but it´s me, Marina form the ...Sorry i am anonimous but it´s me, Marina form the NCT group in London!!<br />xxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-65835992733900193712013-11-01T20:47:55.898+00:002013-11-01T20:47:55.898+00:00Hi Mette, hi Neil ! Just thought of you guys so ha...Hi Mette, hi Neil ! Just thought of you guys so had a peek at Lilian´s blog. I am happy to hear that things are going well in Danemark. The pictures look wonderful!!<br />Bye for now!<br />Kisses to Lilian and Oscar.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-50225048839061340532013-07-14T19:09:24.547+01:002013-07-14T19:09:24.547+01:00Hi from the suburbs of Chicago USA! I found your b...Hi from the suburbs of Chicago USA! I found your blog during a search on the notube.com service. Our Johnny is six months with a double-inlet left ventricle heart defect (no right ventricle) and had his first heart surgery at the beginning of June.<br /><br />He developed an aversion to bottle feeding when they had us begin fortifying his breastmilk with formula and wouldn't let Pamela breastfeed anymore. They put him on an NG tube over two months before his surgery and had us believing he would eat after the surgery. <br /><br />Well you can guess that he didn't so I have been reading your posts with interest. I gather your daughter is still not fully weened but had a positive experience in Graz. We are looking into net coaching but it looks very expensive and will first try to find a weening program here in the US that would take insurance. We'd love to avoid the G-tube (peg tube) because we're afraid he'll keep feeling full. Ironically, he CAN suck and swallow and will eat small amounts of puree. He just doesn't want to eat anything milk-related.<br /><br />Thanks for the posts and my best to your family!Anonymoushttps://www.blogger.com/profile/14456469890367984766noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-4073145035651751262013-07-01T12:14:45.893+01:002013-07-01T12:14:45.893+01:00Wishing you all the best in denmark.Wishing you all the best in denmark.Irisnoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-87824411562360940272013-01-24T11:07:30.720+00:002013-01-24T11:07:30.720+00:00Elza and her mom Jana from Estonia.
I want to say...Elza and her mom Jana from Estonia. <br />I want to say thank you a lot for your story which is sooo optimistic unlooking how hard times ou were going through. Thank you for finding time!! to write. This should be a help to many parents, who find that their life is soo hard, and who have a lack of strenght... Sorry, my vocabulary isn't enough to say what I want, but I believe you understood my poor english. And wish all the best to you and you little baby-star.jana tyllonoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-58250497898517852852012-10-02T23:34:20.761+01:002012-10-02T23:34:20.761+01:00Thanks for your marvelous posting! I really enjoye...Thanks for your marvelous posting! I really enjoyed reading it, you're a great author.I will make certain to bookmark your blog and definitely will come back very soon. I want to encourage you to definitely continue your great work, have a nice holiday weekend!<br /><i>My site</i>: <b><a href="http://letswinmoney.co.uk/" rel="nofollow">win money online</a></b>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-43014739695179482572012-07-29T21:50:40.148+01:002012-07-29T21:50:40.148+01:00Well done Lilian! Great news all went well xxWell done Lilian! Great news all went well xxIdahttps://www.blogger.com/profile/12198282251106588118noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-13824131932893315012012-06-07T22:34:20.336+01:002012-06-07T22:34:20.336+01:00CCCCCCCCCCCbbbbbbbbbbbbbbb_CBJSACbbbbbbbbbbbbbbbbb...CCCCCCCCCCCbbbbbbbbbbbbbbb_CBJSACbbbbbbbbbbbbbbbbb ffhflfkehfckfckhukfhu (= Lilian, you are the coolest Lilian in the world!! Much love//Your crazy friend Anabelle)Idahttps://www.blogger.com/profile/12198282251106588118noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-45733497749492445622012-05-16T07:05:08.314+01:002012-05-16T07:05:08.314+01:00hello from olga on tubefedkids. loved the post -- ...hello from olga on tubefedkids. loved the post -- way to go everyone! and a very special shout out to grandmothers: my mom's efforts and creativity and patience and conviction went a long way towards weaning zander. she would wield the blender like a pro, making him food for his tube and for him to try by mouth. :-) <br />so great to read a good update. go, lilian, go!Olgahttps://www.blogger.com/profile/13812716670021878946noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-72700424141560484012012-04-01T06:19:05.791+01:002012-04-01T06:19:05.791+01:00Hi,
This is Osman from Turkey. We had met with you...Hi,<br />This is Osman from Turkey. We had met with you CS conference at Northampton. I am so happy to read that Lilian is doing great job. Can you please let me know your email adress because I would like to ask some questions about the feeding clinic? may be we can take Daphne to this clinic too?<br /><br />thanks<br />Osman<br />bastasosman@hotmail.comOsmanhttps://www.blogger.com/profile/09856360230789198232noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-44448721927134016382011-12-24T04:57:45.885+00:002011-12-24T04:57:45.885+00:00i've been following with bated breath! merry c...i've been following with bated breath! merry christmas, you guys, from very far away. i think this last post needs to be posted far and wide, for its wisdom and insight (yep, parents also need to be weaned, and supported! eating is after all a family affair, for starters). I also love your clear words explaining the Graz idea about grazing being key - none of this nonsense about expecting three square meals a day. <br />so HOORAY! hooray for all of you, and wishes you more sleep and joy with food in 2012!<br />- Olga, Zandy (almost 2 years tube-free), and his sister Maliah.Olgahttps://www.blogger.com/profile/13812716670021878946noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-37986270644959728982011-12-16T22:40:57.580+00:002011-12-16T22:40:57.580+00:00I love reading your blog.
Our Austria blogs are a...I love reading your blog. <br />Our Austria blogs are almost identical. It is great to read and feel exactly what you are going through and to know that we are not alone.<br />Eva was our rock too. She held us together 100%. <br />Since Austria we too have taken a step back from listening to the 'medical world'. We are stronger (husband and I) when it comes to decision making for our daughter. We love having many different opinions about one topic when it comes to her care, as we can then select the one we like best (or none) and we know we are doing the right thing. <br />We couldn't do that before Austria. They gave us the strength to be parents for our daughter. It is a great place to be!shoshanahttp://www.tovasibony.com.aunoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-3006864412734044072011-12-16T22:05:02.952+00:002011-12-16T22:05:02.952+00:00Lilian is a lucky girl having such great parents! ...Lilian is a lucky girl having such great parents! You both are doing a great job. No matter what happens with this trip I'm sure she will gain a skill or two or three! Even if its not sure the goal you are hoping for will be reached.. but then you have at least tried. Big hugs!Idahttps://www.blogger.com/profile/12198282251106588118noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-32082981919252294042011-12-16T14:10:05.549+00:002011-12-16T14:10:05.549+00:00Mette gave me a knowing smile when she read this! ...Mette gave me a knowing smile when she read this! Hahaha<br /><br />We're not 100% how it'll work back in the UK but our dietician is very supportive of our efforts. We assume we'll follow the same steps here but with email and phone assistance.<br /><br />Today was good. More to come on new post later today. Now where is the Hoover?Mette, Neil and Lilianhttps://www.blogger.com/profile/14766241856071292290noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-25334311878408335982011-12-16T10:11:49.019+00:002011-12-16T10:11:49.019+00:00*without not with our!*without not with our!shoshanahttp://www.tovasibony.com.aunoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-72269076482015643332011-12-16T10:10:55.790+00:002011-12-16T10:10:55.790+00:00Hi,
I am so glad you have Eva as your physio.
We ...Hi,<br />I am so glad you have Eva as your physio. <br />We could not have weaned our daughter with our Eva. She is such a fabulous person. <br />Please send her my love!shoshanahttp://www.tovasibony.com.aunoreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-46981202873836110462011-12-15T21:12:51.182+00:002011-12-15T21:12:51.182+00:00i love your awareness of being underslept and snap...i love your awareness of being underslept and snappy. we used to just be snappy (ok, me. the husband would wisely slink off...)<br />out of curiosity, how does the clinic plan for you to continue weaning at home? does it switch to a netcoaching scenario? or something else?Olgahttps://www.blogger.com/profile/13812716670021878946noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-76679323932584339252011-12-13T20:32:41.150+00:002011-12-13T20:32:41.150+00:00woop! good news, all!!!
comoot
the issue of impac...woop! good news, all!!!<br />comoot <br />the issue of impacts on development/reduced quality of life caused by overfeeding absolutely needs to be recognized and addressed. *sigh* our pediatric hospital is kind of on it, but there's the phalanx of dieticians and other chart-bound maniacs to be overcome :-)Olgahttps://www.blogger.com/profile/13812716670021878946noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-19870171573004194832011-12-12T20:24:32.682+00:002011-12-12T20:24:32.682+00:00Hi Olga,
Apparently Arnold Swarchenegger himself ...Hi Olga,<br /><br />Apparently Arnold Swarchenegger himself was born around these parts. Maybe he was a tube fed kid too?!?<br /><br />Mette and I are very happy today and had a good chat with Eva from the team.<br /><br />See the latest update for details.<br /><br />NeilMette, Neil and Lilianhttps://www.blogger.com/profile/14766241856071292290noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-17428940712379007222011-12-12T06:46:22.379+00:002011-12-12T06:46:22.379+00:00hey! i've been following your blog ever since ...hey! i've been following your blog ever since you left the link on tubfedkids.ning. so my best friend of all time (we met as kids in vienna) says that graz is kind of the hinterlands/hicksville boonies of austria. hinterlands where they just happen to do some amazing things for tubie kids. i sincerely hope that you get the meeting and explanations that you need!!!<br />best wishes your way!<br />- olgaOlgahttps://www.blogger.com/profile/13812716670021878946noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-86998339336933070082011-12-11T08:30:21.834+00:002011-12-11T08:30:21.834+00:00Thanks! The internet connection here is ropes so w...Thanks! The internet connection here is ropes so we havent watched the killing yet. Nice to hear that the jumper is back.<br /><br />Both kiddies slept until 9 this morning. That is unheard of. Mmmmm. Sleep.<br /><br />NeilMette, Neil and Lilianhttps://www.blogger.com/profile/14766241856071292290noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-23700950989192495742011-12-10T23:29:22.126+00:002011-12-10T23:29:22.126+00:00Hi Neil Mette et all
Lovely to read the blog and p...Hi Neil Mette et all<br />Lovely to read the blog and pleased to see that Lilian is making progress and that Oskar is as well. Looks like you are all enjoying Austria and we are looking forward to seeing you all soon. It looks like we will have to prepare a special Christmas dinner for Lilian and Oskar.<br />Just watched the killing II and pleased to see the jumper is back!!<br />love Mum & DadAndrewGrinnallhttps://www.blogger.com/profile/02808155928670595130noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-39288325356224160012011-12-06T21:09:57.760+00:002011-12-06T21:09:57.760+00:00Thank you for the updates, really interesting read...Thank you for the updates, really interesting reading! Sooo pleased to her everything have been going so well! Sounds like you are in safe hands :) Try to enjoy the time away from the usual four walls and let Lilian do all the hard work! xxIdahttps://www.blogger.com/profile/12198282251106588118noreply@blogger.comtag:blogger.com,1999:blog-8578412255273545314.post-92219923974534904892011-08-15T16:42:14.884+01:002011-08-15T16:42:14.884+01:00I've missed your updates busy parents, lovely ...I've missed your updates busy parents, lovely pics! They are both soo sweet! Oscar must have grown so much since last time I saw him :) Need a date soon, will look into the dates you send me Mette!//Busy Nursie xxIdahttps://www.blogger.com/profile/12198282251106588118noreply@blogger.com