tag:blogger.com,1999:blog-8183531134319162412.post3315536830642086652..comments2011-04-27T21:43:38.414-05:00Comments on Three Graves: She has GalactosemiaThe Graves Familyhttp://www.blogger.com/profile/04670564585672813227noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8183531134319162412.post-91974590536738265332010-10-25T14:08:13.295-05:002010-10-25T14:08:13.295-05:00I'm reading your story and my eyes are full of...I'm reading your story and my eyes are full of tears..I too have a daughter with classic galatocsemia.. who was born at 36 weeks on 8/26/10. Because she was a preemie we were still in the hospital when I found out about 5 days later she had this disorder.<br />My daughter Aliena stayed in the hospital for 12 days before being allowed to come home. It was scary everyday. The doctors said they saw 1 baby every 2 years with this disorder. <br />I totally understand everything your saying..even the blood draw being so hard to stand by and watch. They stab my poor baby trying to get, like you said an adult size sample. It sucks and my eyes well up standing next to her and allowing these people to keep poking her over and over again, until they have enough blood to test. <br />please contact me LMTPWAGNER@YAHOO.COM<br />My name is Pamela it would mean so much to have a friendship with other parents with kids of galatosemia. I worry so much everyday.Anonymoushttps://www.blogger.com/profile/04697719072249809098noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-15945664753473332882010-10-21T06:02:29.837-05:002010-10-21T06:02:29.837-05:00Oh I remember living each and every one of those e...Oh I remember living each and every one of those emotions when Jackson was born two years ago. It's so scary initially, and something that unless you have a child with the same disorder, you can never understand the day to day challenges. I will say however, that it DOES get easier. Scarier for new challenges as they get older, but the allowed/not allowed foods do become some what of second nature. <br /><br />I spend the majority of my free time searching for new recipes I can make or tweak so that he can eat them, and overall, he's doing great! Speech delays, but nothing other than that.<br /><br />I found you on my blog www.momofagalactosemic.blogspot.com which I haven't updated in a while, but will soon. I have an everyday blog that you can also check out www.ahouseofboys.blogspot.com and if you ever want any recipes or have any questions or what not, PLEASE feel free to ask!! It can be scary and the disorder is so rare, that we all need to lean on each other from time to time. Good luck with everything!!!<br /><br />TinaTinahttps://www.blogger.com/profile/07300418117747317549noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-5039155541758042252010-09-29T06:52:12.015-05:002010-09-29T06:52:12.015-05:00Wow, what a heartfelt, deep, moving post! Thanks ...Wow, what a heartfelt, deep, moving post! Thanks for sharing your heart! I have a friend from college whose son his this condition! Let me know if you would like her info! <br /><br />I found your blog through Monkey Tales winner list. <br /><br />I just became a follower! Would love for you to follow back!! <br /><br />Best of luck!Go Long! Go Green!https://www.blogger.com/profile/04500816159649715745noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-90876041867637979462010-09-17T22:04:35.210-05:002010-09-17T22:04:35.210-05:00Wow! I can't believe how similar our lives are...Wow! I can't believe how similar our lives are at this point. In some odd way it's nice to know there is someone out there that is experiencing a similar situation. There are still so many unanswered questions with our boys. Adam is actually being referred to a neurologist and has his first appointment in November. There are still so many things going wrong that we don't know about, all of which have affected his development and brain activity.<br /><br />And Owen... I so remember the constant projectile vomiting and spitting up through his nose. I guess one never forgets those moments.<br /><br />I reviewed the list of foods that your daughter can have and I have TONS of recipes that would work for you guys if you're interested. Over the last year I have held contests online, skimmed every magazine I can find with recipes in it, and researched allergy friendly cook books to come up with a binder full of meals our whole family can eat that will work with the kids' diets. Adam can only have 35 basic foods/ingredients at this point.<br /><br />Please don't hesitate to ask if you want some of them. The first one that came to my mind that your daughter could have are these chicken and zucchini enchiladas. They're so yummy and completely safe. There are so many more. I'd love to share.<br /><br />Good luck with everything.Every Star Is Differenthttps://www.blogger.com/profile/07638575103764627880noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-46053792424960406332010-09-17T21:48:40.695-05:002010-09-17T21:48:40.695-05:00It must be incredibly difficult to deal with, and ...It must be incredibly difficult to deal with, and how sad for all those delicious foods that she cannot eat. I thought cooking for Joseph would be hard, but now I am pretty used to it, and have learned how to cook the foods I love for me (and Isabella) and make him something else, or find out how to add what I love to the basic meal. I am continuing in interest about this, and look forward to future posts. I am so sad for you to have to deal with this, but it's what life is all about.The Jones'shttps://www.blogger.com/profile/16262779761751213454noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-69377124644312469652010-09-17T17:09:11.256-05:002010-09-17T17:09:11.256-05:00Wow, Carolena, I had no idea that it was so diffic...Wow, Carolena, I had no idea that it was so difficult once she started eating solid foods. I just didn't realize. She can eat hot peppers, huh? I find that kind of humorous, does she eat them? Good luck coming up with fun and new recipes! It's like you get to have an adventure everyday (that your up to it, anyway)! How is she doing? I sincerely hope that you are doing well! I miss you terribly and cannot wait to see you again! You have my number. You should give me a call sometime! Love you!!! :)DeAnnahttps://www.blogger.com/profile/02191416100067022484noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-14189560089292905722010-09-17T15:31:31.185-05:002010-09-17T15:31:31.185-05:00You are such a strong woman, and an inspiration! ...You are such a strong woman, and an inspiration! I hope you know how much you are all loved. And we especially can't wait to see more and more of you. :)Beckhttps://www.blogger.com/profile/10667067226914581203noreply@blogger.comtag:blogger.com,1999:blog-8183531134319162412.post-37185443658729972512010-09-17T15:11:52.886-05:002010-09-17T15:11:52.886-05:00Poor baby, and parents. It will eventually become ...Poor baby, and parents. It will eventually become second nature in what to feed her. She is a beautiful blessing!The Pateshttps://www.blogger.com/profile/02835619274127526735noreply@blogger.com