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Status: iris956

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About Me: Female, 26, donna, TX, member since Nov 2008

Well, i have a 5 month old son joey. he has short gut syndrome and he was the reason i came to these web pages in order to look up info on the issue. it is a sort of relief to read stories about parents with their children that suffer from the same issue. though of cour ... [More] se i would wish that this didnt happen to anyone or anyones child. but my son is doing fairly good i mean he manages to smile at us at this time though he has had a short tough life,but i am still grateful because i have him with us. and to read the stories where it shows that yes the road ahead is hard for some time hopefully and god willing it will pass and he will grow to be a strong young man. it is sad he has not been able to leave the hospital and has gone through 3 surgeries already by his 3rd month. it breaks my heart because here i am 23 yrs old and healthy, never been into hospitals besides to have him and out in 3 days. what i wouldnt give to take his place. the hospital we are at the nurses love him and for x-mas let us have a room in pedi to spend time with him. which i am so thankful for, in a few days or weeks we will have to travel to Pittsburg because so far the feedings that he is getting aren't going so well. he does fine for a few days gains a few oz at least then stops and starts dropping them faster then he gains. so far we havent managed to have him gain a full pound from his original weight. hopefully once over there which we read is a good hospital that has seen alot of children with short gut syndrome they will find some way to help him grow. it is very hard at days because ofcourse you have a baby and think you'll start a new life right after and right now it is on hold till he comes home. but as i said he is smiling and watching barney and loves to be cuddled i pray he gets through this and that he will not remember any of this. anyone who reads this please if you have any stories like this let me know. i see some babies are on feeding tubes for a yr or two and off and on tpn if you can please let me know how long it took your child to over come these hard struggles at that age. it will give me great hope to keep thinking positive. everyone who has a child like mine i wish you and them the best in the world, be strong, and keep faith, though i know from experience it is hard at times......thank you for reading our story.......GOD BLESS [Less]

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