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windys1975 |
just an update on dakota |
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hi girls i haven't posted an update in a while. dakota is 17 months old now but we have been having alot of problems with him. he is now a failure to thrive baby, we have been having issues with him growing and gaining weight. he stopped growing when he was 9 months old. not sure why yet but he got alot of blood genetic testing done. so come to find out he has a few duplicated chromosomes and a deletion chromosome. so with that jason and i had to get our blood drawn to check our chromosomes to find out what's wrong with our son. he also got evaluated on everything and come to find out he is very developmentally delayed he is now at a 7 month old level. he is getting a lot of therapy for his needs once a week. overall he is a very active happy baby boy and we love him to death.
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emilie42080 |
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I just now saw your post and wanted to say that I am sorry to hear of Dakota's problems.
Why would he do so well until 9 months old and then start having problems? That almost doesn't make any sense. but I see that you are searching for answers and doing everything you can for him, so that is good. Good luck with everything!
<a href="http://bellybelly.com.au/"><img src="http://bellybelly.com.au/t/mXi3IzGmuR.gif" border="0" /></a>
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windys1975 |
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he has had problems since he has been born, as in like gerd, wouldn't drink much formula, very slow weight gain also,reactive asthma only acts up when he gets sick so when he got sick he would loose weight .either he was too sick to eat or he would vomit what he ate so he was loosing a pound every time he got ill. but he pretty much was stalled at 17 lbs for 6 months. he can't chew his food so we have to puree all table foods for him and he is strictly on pedisure. he can't have whole milk, water or juice. and no baby foods. he is now finally up to 19lbs 13oz and 30 1/2 inches tall.. so thanks to us in researching things on the internet about what we could do to boost his calorie intake. because he needs everything high in calories. we did find somethings and he gained a whole pound in a month. well the doctor's didn't like that. i didn't care because he did finally gain weight and i was so proud of what we did. we have already been turned into the childrens division over all this and it pisses me off that we have been to doctor after doctor to find out what is wrong with him and all they say is i don't know lets try this and that and send us on our way. he did get a swallow test done after i demanded it only thing they seen on it that if he was feed too fast his acid reflux would act up really bad where they seen it actually come up with every bite. so we have to feed in slowly now to give each bite a chance to go down. i just can't wait until june 28th that's when we go to genetics to find out what's going on genetically. hopefully unless they need more tests done.
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beth7919 |
#3 | |||
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Mod
I can help you! Platinum Member ![]() Over 30,000 posts !!! Oldtimer
![]() Posts: 35364 06/17/2010 11:13 PM Drew's Mommy!
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i'm so sorry you guys have to deal with all that!!!!
hope you find something out at your next appointment!
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squeakers2 |
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I am sorry you have to work so hard to get some answers. I hope that you can get some information that will help your wonderful little man!
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windys1975 |
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We got the genetics testing done he has a duplicated chromosome and a deletion chromosome. and i have the same chromosome issue so he got all of this from me. i have been feeling so bad over this i know it's not my fault but it don't make me feel any better. so they are saying all of his physical delays and his webbed fingers and 2 holes in his penis this is the cause of it. and they don't know what his future holds. only time will tell on how bad his learning ability will be. I also have to now get my 2 girls tested for this chromosome to see if they have it too if so then it world explain their learning disability. anyways he is starting to grow again he is now 21 lbs YAY!!. and sometime this week he will be getting braces for his feet. and since he has been getting all this extra help from physical therapy and speech. he has really been improving. the swallow test showed his gerd was acting up alot but no food or liquids going to his lungs.
also he had very low tone on his chewing ability so now that is why we think he stopped growing because he was not able to chew his food a swallow, also he had no sucking skills either he don't even suck on a bottle nipple he was bitting it to get the liquid out. so that could also be why he wasn't gaining weight like he should have. so now everything is coming together. and now we figured out his problems and now he is thriving. we are really happy now that we got answers. so now he is able to feed himself and not chewing just mushing but it is a start.
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windys1975 |
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just wanted to post some new pics of dakota
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emilie42080 |
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Dakota is a cutie, thanks for the pictures.
I am glad you finally got some answers and things are going better with him. Even though it sounds like there will be quite a few bumps ahead, at least now you know why certain things are the way they are and you will be able to help him as needed.
<a href="http://bellybelly.com.au/"><img src="http://bellybelly.com.au/t/mXi3IzGmuR.gif" border="0" /></a>
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