tag:blogger.com,1999:blog-1000326625965122367.post307714219015236910..comments2024-03-08T17:14:17.994-05:00Comments on Pray For Lilly: Always watching ...Lisahttp://www.blogger.com/profile/06306217651417023803noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-1000326625965122367.post-45912948871937976112011-01-24T22:03:25.130-05:002011-01-24T22:03:25.130-05:00Oh...Make sure you are on a high calorie diet with...Oh...Make sure you are on a high calorie diet with her. Should be 30 calories per oz, but need to add a supplement called polycose which helps cut down on the protein level so as to protect the kidneys from damage. High calorie diets have shown to help the heart close holes in some studies. If you want to know any recipes, let us know.FAITHhttps://www.blogger.com/profile/01461761958590582201noreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-16624551429082914712011-01-24T21:56:38.219-05:002011-01-24T21:56:38.219-05:00We have a 2 year old girl, Faith, with Trisomy 18....We have a 2 year old girl, Faith, with Trisomy 18. We have been through many things you are probably facing. We would love to offer any helpful advice. We had the same problem with Faith keeping her eyes open while sleeping which she is no longer doing. Feel free to contact us at bradjesi@hotmail.com...please make sure to put Trisomy 18 Lilly in the subject so we don't miss it as junk mail. May the0 Lord bless little Lilly.FAITHhttps://www.blogger.com/profile/01461761958590582201noreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-84205679817536806492011-01-24T16:55:09.684-05:002011-01-24T16:55:09.684-05:00Lisa, we got your Christmas card and have been fol...Lisa, we got your Christmas card and have been following Lilly's blog. My 12-year old daughter Madeleine has read the entire blog and sent it to several of her friends asking them to add your family to their prayers. She always lets me know if you've updated your blog and loves the photos. Having a younger brother born with Down Syndrome and multiple health complications, your story brings me back to the many challenges my parents faced. Just know that you are in our prayers lifting you up during this journey.Debbie Williamsnoreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-78213247333243333942011-01-22T14:39:11.984-05:002011-01-22T14:39:11.984-05:00I had a friend once that slept with her eyes open....I had a friend once that slept with her eyes open..she lived to 87 years so guess it is not to bad to do<br />hugges and kisses my Lilly and her mom, dad, brother and precious sister...<br />mjodd ballhttps://www.blogger.com/profile/18377438400239789992noreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-67183522759822664812011-01-21T19:25:10.571-05:002011-01-21T19:25:10.571-05:00I have prayed for you today dear Lilly, all the wa...I have prayed for you today dear Lilly, all the way over here in New Zealand. Kisses from CarolCarolnoreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-37398381427676006782011-01-20T21:51:40.752-05:002011-01-20T21:51:40.752-05:00Hi Sweet Lilly! I miss you already.Hi Sweet Lilly! I miss you already.Nikkihttps://www.blogger.com/profile/15253440747389521864noreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-18628831130390031182011-01-20T09:11:02.536-05:002011-01-20T09:11:02.536-05:00Gage has a g-tube so no advice on the securing the...Gage has a g-tube so no advice on the securing the NG tube but as far as the irritation I would suggest aquaphor. The pediatrician recommended it to us, especially for areas they could rub and get in their mouth, aquaphor is safe. We use it for any skin irritation dryness and diaper rash. Good luck!Follow My Footprintshttps://www.blogger.com/profile/06027724459947094221noreply@blogger.comtag:blogger.com,1999:blog-1000326625965122367.post-9477132506837744152011-01-20T08:08:22.207-05:002011-01-20T08:08:22.207-05:00Oh Lilly!
You do look sort of like a doll!Oh Lilly!<br /><br />You do look sort of like a doll!Tabbynoreply@blogger.com