Our little monkey man turned three on Friday, and is happy because for the first time since he was born, he isn’t connected to devices….. the docs want John and Naomi to take Alex off nourishment device and stomach suction device a few times a day and build up his tolerance.... The goal is by the time he starts kindergarten, he wont have to wear them during school hours.
Alex had an extensive examination of his bowels at Children’s Hospital last week….as we expected, little or no activity detected…slight activity in part his upper intestine, but not enough to be optimistic….they have decided now not to do anything drastic until gets older, unless in an emergency. The determination on bladder is about 40% function, meaning he will have to self cath for the rest of his life, assuming advances in medical science cant come up with something….ditto his intestines. But, with the rapid advances in DNA and stem cell research, and intestinal transplants, we hope that eventually something will be developed to help Alex’s quality of life.
They were told a team of specialists at a hospital in Pittsburgh, had requested his medical records to follow his development over the years, and of course they consented. My sweet grand monkey is going to be a celebrity.
Alex’s medical team said there is a 13 year old who also has MMIHS, and he plays soccer and is a normal kid. That was so good to hear.
His next big test is in March, when he goes back to urologist…they are going to make a decision about possible surgery if it will improve his bladder function. I will let you guys and gals know how it goes.
