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Baby Alex update.....my little Grand Monkey turned 6 months yesterday...
His intestines still not working....good news his bladder function is up to about 70%, so they dont cather as much.....the tube you see across chair is his nourishment system that goes into an artery in his chest.... Alex has been on a new nourishment formula for the past 2+ months thats produced in Europe and not approved by FDA.... he had severe jaundice and wasnt gaining much weight until UAB Medical team put him on it. The hospital doesnt charge them for it...not sure what Alex's prognosis would have been with out it..
The jaundice has gone away, his color is great and the little monkey is just over 14 pounds now. His height and weight is in 65% percentile now. The docs have started introducing bottles a few times a day to see if it will stimulate guts...they pump it out after an hour or two.
Some more good news is he is able to go off all three systems for several hours a day now so he is like any other normal 6 month old. Just a very happy little guy all the time.
Next milestone is visit to urologist next month to see what else they can do to increase bladder function.
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That is great news- ours had mucho trouble at 6 months- one weighed 8 pounds one weighed 10- in and out of hospitals their entire life... lots of problems... lil SG our girl below 5% on every single measurement... neither could not keep milk down, rickets, lice, lung development problems, cognition of a two month old- what a list and I cannot remember them all and glad I cannot not ...neither could hold their head up much less sit up at 6 months.... they told us at Texas Shriners that neither would probably ever be "normal" (what ever the #badword# that is)... that SG would top out at 5'1 and JJ at 5'4... JJ would probably have deformed legs due to severe rickets.... Ms Tix told our first pediatrician and the docs to piss up a rope... and got busy being a mom and loving them...
By 1 year SG our twin girl was at 50% height (20% weight) and Lil JJ was at 75% height, 50% weight.... by two years she was at 80% height... he at 105% height... completely and totally healthy at that point and starting to head off the growth charts- both of them.... excepting JJ's insane allergic reaction to cats....which to his disappointment dogs him (no pun intended) to this day
Now at 18 years SG is almost 5'10 and 115 pounds of dancing beauty... wise beyond her years- all legs and heart....
Lil JJ is not so little any more at 6"2 180 pounds ... big ass fast athlete rawhide muscle on legs that belong on a 250 pound running back... on 30% academic scholarship to Wheaton College...a top tier liberal arts school (he is thinking about coaching)
Love can overcome #badword#ing anything... and I think that is what is happening to Alex... lots of love making him moah better ... and moah better... yes the medicine and all that bull#badword# is necessary but NOT sufficient- love will do it my friend... that boy is being loved ... you can see it in his eyes!
