New Baby was born Monday to John66 and wife

john66

john66

Senior Member
Messages
159
Hi everybody, thank you for your love prayers and support it means so much to me and my wife as of right now Andrew is getting stronger he has hypotonia and they are trying to figure out why, they have genetic testing going out to the Mayo Clinic. We were lucky enough to meet with one of the top geneticists in the world from Columbia University and she told us that none of his issues are regarding mitochondrial function are related to my chronic fatigue issues in the the mother's mitochondria are given to the child so I am greatly relieved and hopeful that none of his issues are related to me and that he will function normally given the time he needs. It is been very difficult week lots of ups and downs having trouble standing at times but disappoint every little smile or activity from Andrew really lift me up. as of this point hypotonia means he doesn't feed as well as he should but in time he will walk and talk just like normal kids. he will need physical and occupational therapy along the way but there is no doubt his ours forever. we had a meeting with one of the hospital neonatologist yesterday who is she said she was very concerned about his lack of weight gain and floppiness and my wife asked if he's going to make it and she just kind of said that I hope so and we were both terrified, but the geneticist set our mind at ease that he is going to grow up normally they will do testing on from some 15 and all the others just to make sure he doesn't have something called prader-willi and if he does it is manageable and he will get all the help and love these from his parents, family and friends. as part of the exam the geneticist asked about everybody's background she was kind enough to spend some time with me regarding chronic fatigue syndrome it explains that the mitochondrial function can sometimes be help within all plant based diet which I am sure to try. she basically said but the mitochondria need to produce more ATP which I knew already but did not know that a plant based diet Can contribute to that.
 
Little Bluestem

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
john66 said:
she basically said but the mitochondria need to produce more ATP which I knew already
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Most health care professional don't know this, so she get a point.

Don't let people like that idiot nurse terrify you. Take care of yourselves, each other, and your darling baby boy. :love:
 
john66

john66

Senior Member
Messages
159
Hi Guys, Andrew is finally home as of right before Thanksgiving. Due to his condition of Prader Willi, he does not eat well and we are on the low end of the growth curve. Feeds are every three hours and sometimes take up to an hour. He is a very sweet boy and never cries, partially die to the hypotonia. Lots of unknwons at this point-intelligence, when will hyperphagia kick in, when can we get HGH. Lots of fighting with insurance companies to get aid and the right appointments. We immediately got rejected by Medicaid-because he hasnt been affected by Prader Willi! For Real!!! Today was a bad day. He didnt eat well and we were forced to take the fiver of vaccinne! Werent prepared for it and the pediatrician doesn't know much. Went to the ER for possible RSV, basically stuffed nose.He did cry when he was suctioned. That and no 02 monitor at peds office. I feel like I am living in an alternate world! Explaining shit to doctors all over again!!!!Hard not to project what life will be in the future.. Feel like I got kicked in the ......
 

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Kati

Kati

Patient in training
Messages
5,497
john66 said:
Hi Guys, Andrew is finally home as of right before Thanksgiving. Due to his condition of Prader Willi, he does not eat well and we are on the low end of the growth curve. Feeds are every three hours and sometimes take up to an hour. He is a very sweet boy and never cries, partially die to the hypotonia. Lots of unknwons at this point-intelligence, when will hyperphagia kick in, when can we get HGH. Lots of fighting with insurance companies to get aid and the right appointments. We immediately got rejected by Medicaid-because he hasnt been affected by Prader Willi! For Real!!! Today was a bad day. He didnt eat well and we were forced to take the fiver of vaccinne! Werent prepared for it and the pediatrician doesn't know much. Went to the ER for possible RSV, basically stuffed nose.He did cry when he was suctioned. That and no 02 monitor at peds office. I feel like I am living in an alternate world! Explaining shit to doctors all over again!!!!Hard not to project what life will be in the future.. Feel like I got kicked in the ......
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Hi @john66
I am so sorry about your baby boy's health issues and the responses from the insurance.
Andrew is lucky to have parents like the both of you who will fight for him and be actively seeking out the very best for him.
i am sure things are not easy right now, with the feedings, the appointments, and everything else. it must be exhausting for the both of you. Take extra care of each other during this time.

My best wishes for Andrew to feed better and gain some weight very soon and wishing all of you a very merry Christmas
 
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