just got back from the drs office

he is 16 months old! he had an mri but it came up fine..we are doing genetics on the 31st..i hope we figure out whats up!
 
its a little bitty firetruck!! so cute!! i love these things..i want to get all of them.
 
The normal MRI is a good sign. No brain structural abnormalities is fabulous news.

There are many mutations that cause hearing loss and some of the syndromes less severe than others. Don't assume the worst case scenario. I'm a mutant that turned out well despite prematurity and extremely low birth weight. Frankie has so much going in his favor.
 
love the firetruck on his hearing aids!
I need to get this stuff for my old Oticons (the crappy one)

oh yeah the MRI I had when I was little turned out to be fine except for a missing grey matter.
 
yep..i am surprised there is nothing wrong on it but i was very glad! now if we can just pin down the rest..but i was talking to a lady whos sweet boy has way more issues than frank..and they still dont know why, so we may never know!
at least hes a sweetie though..we love him!
 
I'm in my 40's and I still haven't nailed down a diagnosis. The human genome project has progressed far faster than expected and helped researchers find new avenues for research. I hope that my kids will have more information in the near future. Frankie, too.
 
frankiesmom said:
it IS good..but hes just turning down everything. oh well. at least he..can live off this stuff i suppose.
on a better note..his "tube riders" came today! so cute!!!
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My great nephew lived off it for several months until his mom started the technique to get some solids into him. So you can take comfort in the fact that he is at least getting the nutrition necessary to allow development advances to occur.
 
sallylou said:
I'm in my 40's and I still haven't nailed down a diagnosis. The human genome project has progressed far faster than expected and helped researchers find new avenues for research. I hope that my kids will have more information in the near future. Frankie, too.
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Unfortunately, this is true. We have many more unknowns than knowns in this field.
 
well, we spoke to the dr today, we go back tomorrow to see about a feeding tube..the pediasure isnt working. he is having the same reaction he had with every other formula weve tried. damn.
 
frankiesmom said:
well, we spoke to the dr today, we go back tomorrow to see about a feeding tube..the pediasure isnt working. he is having the same reaction he had with every other formula weve tried. damn.
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Darn! I am sorry to hear about the set back, but at least they are going to address it agressively.
 
yeah..that is true but still..i had a feeling we would end up with this, but i was hoping he would get with the program. poor kid! he is feeling awful today..i was afraid it would happen though. at least he will get the really sensitive formula that will be even better for him.
 
frankiesmom said:
yeah..that is true but still..i had a feeling we would end up with this, but i was hoping he would get with the program. poor kid! he is feeling awful today..i was afraid it would happen though. at least he will get the really sensitive formula that will be even better for him.
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Yeah, set backs are disappointing. When do you see the GI specialist?
 
we arent now..now we are going to see the physician to go and schedule it and see the gi specialist afterwards. what a mess. i just tried giving him his bottle..nope. he dropped it. i am HOPING that this is just a fluke..if we lose the bottle, we are out of options.
 
frankiesmom said:
we arent now..now we are going to see the physician to go and schedule it and see the gi specialist afterwards. what a mess. i just tried giving him his bottle..nope. he dropped it. i am HOPING that this is just a fluke..if we lose the bottle, we are out of options.
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I'll be keeping my fingers crossed for a fluke.
 
oh yay! he wont need a feeding tube..he does need this vile stuff called peptamen jr..it smells like something ungodly, but he will drink it..he is going to see a GI specialist after all. i got the doctors report from the developmental pediatrician..it says moderate to severe developmental delay, very severe cognitive delay and neurologically involved..what that last bit means, i don't know..so at least we know somewhat of whats going on ! i did..but i truly hoped i was just being an overly worried mom..but oh well. hes happy, im happy. he sees his audiologist this friday to see how hes doing with his hearing aids..thanks for the suggestion of getting oto-ease..he enjoys that! i had to order it online though, i couldnt find it anywhere..even the drug store!
 
frankiesmom said:
oh yay! he wont need a feeding tube..he does need this vile stuff called peptamen jr..it smells like something ungodly, but he will drink it..he is going to see a GI specialist after all. i got the doctors report from the developmental pediatrician..it says moderate to severe developmental delay, very severe cognitive delay and neurologically involved..what that last bit means, i don't know..so at least we know somewhat of whats going on ! i did..but i truly hoped i was just being an overly worried mom..but oh well. hes happy, im happy. he sees his audiologist this friday to see how hes doing with his hearing aids..thanks for the suggestion of getting oto-ease..he enjoys that! i had to order it online though, i couldnt find it anywhere..even the drug store!
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Great! That set back didn't last long!

Neurological involvement means that they suspect that the reason that he is showing delays in motor behaviors has to do with his brain development.
 
frankiesmom said:
oh yay! he wont need a feeding tube..he does need this vile stuff called peptamen jr..it smells like something ungodly, but he will drink it..he is going to see a GI specialist after all. i got the doctors report from the developmental pediatrician..it says moderate to severe developmental delay, very severe cognitive delay and neurologically involved..what that last bit means, i don't know..so at least we know somewhat of whats going on ! i did..but i truly hoped i was just being an overly worried mom..but oh well. hes happy, im happy. he sees his audiologist this friday to see how hes doing with his hearing aids..thanks for the suggestion of getting oto-ease..he enjoys that! i had to order it online though, i couldnt find it anywhere..even the drug store!
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good to hear. I'm very late in the thread and I'm seeing a bit here and there. It sounds like your son may have Crohn's Disease???
 
Jiro said:
good to hear. I'm very late in the thread and I'm seeing a bit here and there. It sounds like your son may have Crohn's Disease???
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No, it isn't Crohn's. Read the first page or so.
 
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