Mosaic 22 continued
Sorry for the delay - we were sick all of us - different sick, but overall not so great, however good news is we are all feeling better - and sleeping more.
So - back to the tale at hand.
So - Anthony is apparently mosaic trisomy 22, hmmmm - no one can tell us what that means today or tomorrow. The diagnosis that everyone at this renowned teaching hospital so wanted may have materialsied but to what end. What does this mean for my baby, for his future?
Well - nothing! it gave more places to poke and prod, but no new answers. Equally, by the time we came up with the diagnosis he had alrady had most of his tests, so our slightly quirky kid remains our slightly quirky guy. Some days bad, some days good - all days interesting and every diagnosis filled witha slightly odd description of our small trooper.
If anything the presence of an underlying genetic condition only seems to make people all the more wary of my son. Doctors certainly seem to expect an incredibly ill little boy whenever we are called into an appointment. Happily, most daysa remarably healthy looking Antonio appears and the doctors and nurses meeting him for the first time recheck his chart to see how this can be. I suppose we are lucky to be healthier than they expect as opposed to the inverse.
Everyone we meet (medically) needs us to explain Anthony's crazy chromosome. We have not had one doctor who has treated another child with similar issues, so hopefully we are a learning experience for all.
I started this blog after a particularly bad day, and I think that this proves theraputic for me to write down some of my frustrations. It also helps to document the emotional roller coaster that we have been riding since Anthony's issues were first discovered. It helps, and it still helps even if no one is reading.
I subscribe to a number of email lists for parents of children with some of Anthony's issues, and every day I realise that we are lucky! Lucky he is doing as well as he is and thankful for every day. We should really be as thankul for the good days of my older less medically complicated son. A medically fragile child reminds us all of the fragility of life, but the lesson is as valid for our heart healthy, chromosomally stable children as well.
So - back to the tale at hand.
So - Anthony is apparently mosaic trisomy 22, hmmmm - no one can tell us what that means today or tomorrow. The diagnosis that everyone at this renowned teaching hospital so wanted may have materialsied but to what end. What does this mean for my baby, for his future?
Well - nothing! it gave more places to poke and prod, but no new answers. Equally, by the time we came up with the diagnosis he had alrady had most of his tests, so our slightly quirky kid remains our slightly quirky guy. Some days bad, some days good - all days interesting and every diagnosis filled witha slightly odd description of our small trooper.
If anything the presence of an underlying genetic condition only seems to make people all the more wary of my son. Doctors certainly seem to expect an incredibly ill little boy whenever we are called into an appointment. Happily, most daysa remarably healthy looking Antonio appears and the doctors and nurses meeting him for the first time recheck his chart to see how this can be. I suppose we are lucky to be healthier than they expect as opposed to the inverse.
Everyone we meet (medically) needs us to explain Anthony's crazy chromosome. We have not had one doctor who has treated another child with similar issues, so hopefully we are a learning experience for all.
I started this blog after a particularly bad day, and I think that this proves theraputic for me to write down some of my frustrations. It also helps to document the emotional roller coaster that we have been riding since Anthony's issues were first discovered. It helps, and it still helps even if no one is reading.
I subscribe to a number of email lists for parents of children with some of Anthony's issues, and every day I realise that we are lucky! Lucky he is doing as well as he is and thankful for every day. We should really be as thankul for the good days of my older less medically complicated son. A medically fragile child reminds us all of the fragility of life, but the lesson is as valid for our heart healthy, chromosomally stable children as well.
Leave a Comment
