tag:blogger.com,1999:blog-5417019465246125802.post8200110977425283009..comments2015-05-08T02:19:53.843-04:00Comments on God Gave Us You: Our StoryJulie and Jasonhttp://www.blogger.com/profile/12779797788223964353noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-5417019465246125802.post-40442995725732589512008-05-16T19:41:00.000-04:002008-05-16T19:41:00.000-04:00Oops, I meant "sisters!"Oops, I meant "sisters!"Angiehttps://www.blogger.com/profile/10934825995604551624noreply@blogger.comtag:blogger.com,1999:blog-5417019465246125802.post-26478521931784840112008-05-16T19:40:00.000-04:002008-05-16T19:40:00.000-04:00What an incredible journey you've had over the pas...What an incredible journey you've had over the past year. You are obviously very strong people and very caring parents who love Lily so much. I love all of the pictures and you can tell just how much her brother and sister adore her. I'm so glad to hear that Lily is doing good on her G tube and new formula. I hope she enjoyed her birthday the other day and I hope her party goes well this weekend! Make a wish Lily! <BR/><BR/>Your new friends from Illinois,<BR/><BR/>The DeKeyrel FamilyAngiehttps://www.blogger.com/profile/10934825995604551624noreply@blogger.comtag:blogger.com,1999:blog-5417019465246125802.post-66028902303576229872008-05-16T18:27:00.000-04:002008-05-16T18:27:00.000-04:00My heart aches for you when I hear of the illness,...My heart aches for you when I hear of the illness, stress and worry that you had to bear during this first year. I am so glad that Lily is responding to the Neocate and to her G tube. I am amazed at her quick progress! She is obviously a fighter and must draw incredible strength from her parents!<BR/><BR/>Good for you for continuing to look for answers and utilize whatever types of treatments are available. I took Brady to a holistic therapist and she worked miracles with his feeding issues. I haven't heard of any other kids with 1p36 having food allergy issues other than Lily and Brady. I'm almost positive that Brady's were a result of massive amounts of antiobiotics given to him shortly after birth. He didn't ever wake up or eat either so they just assumed he must have an infection. It's so frustrating to look back but I can promise you that things have gotten easier for us as time has gone by. I hope you have great fun on Lily's upcoming birthday!Kajsa Farnsworthhttps://www.blogger.com/profile/16658849656247895836noreply@blogger.comtag:blogger.com,1999:blog-5417019465246125802.post-83886108626817099622008-05-13T17:38:00.000-04:002008-05-13T17:38:00.000-04:00Quite a story. The strength with which you bore t...Quite a story. The strength with which you bore that terrible year is inspiring. With Misha, we had a long year after we started to realize that something was wrong until we got our 1p36 diagnosis, but not nearly as traumatic as yours. Misha had bi-lateral inguinal hernias fixed at 3 months, strabismus fixed at a year (or so), and had an endoscopy (part of our search) around the same time. But he never struggled with not being able to eat or keep stuff down. It will be good to keep up on her progress.Candle Endshttps://www.blogger.com/profile/14260392147611209077noreply@blogger.com