Antonio 101
Antonio is the star of this story - albeit he is a small guy and not co-ordinated enough to type. So, for the interim, I will be the teller of this tale. I am Anthony's mom - funny how quickly that moniker becomes the sole definer of who you are. I am writing because I need to - because some days just require an external outlet to seem sensible - and because the absurdity of raising a chromosomally unique child in the current medical system is an adventure that some others might learn from.
Here are the stats on our unlikely star:
7 months old
16 and a half pounds heavy
around 2 feet long
generally congenial - but he like all of us has his moments.
suspected mosaic trisomy 22
Yes - the last line is the reason he gets the blog. Big brother Dominic will remain in healthy child anonymity, muddling through learning about life without a herd of specialists in tow (or are the best described as a bevy, or on some of the more dark days a murder??).
Anyway - Anthony, or as we refer to him in his virtual space - Antonio the mini warrior - currently provides us with a nice laundry list of classifications for the medically inclined - microtia, hypotonia, ASD, bi-lateral hearing loss, dysphasia, dermoid cyst and wait - I think that is him to date, however we are seeing more specialist soon - so watch this space. Anthony has a specialist for every symptom - quite a number of admirers when you cannot even sit up, never mind stand up.
We do not even know the full extent of what troubles await him - and if you are reading this I am sure you are thinking - what a trip - poor kid. But, as much as I may need to rant and release, never pity my little fella - he is a happy, relatively healthy, amazingly content small guy. I am realising that it is my time to reset expectations I was silly to have thrust upon him in the first place.
I need this space to work out things in my head, and if possible learn from others in a similar space and perhaps share a bit that might be of use to someone else. This blog is not going to be doom laden or pity filled - rather it is a story - a tale of a young life just starting, perhaps more differently than I imagined, but starting all the same. This is Antonio's song.
Christina - sleep deprived, but holding on
Here are the stats on our unlikely star:
7 months old
16 and a half pounds heavy
around 2 feet long
generally congenial - but he like all of us has his moments.
suspected mosaic trisomy 22
Yes - the last line is the reason he gets the blog. Big brother Dominic will remain in healthy child anonymity, muddling through learning about life without a herd of specialists in tow (or are the best described as a bevy, or on some of the more dark days a murder??).
Anyway - Anthony, or as we refer to him in his virtual space - Antonio the mini warrior - currently provides us with a nice laundry list of classifications for the medically inclined - microtia, hypotonia, ASD, bi-lateral hearing loss, dysphasia, dermoid cyst and wait - I think that is him to date, however we are seeing more specialist soon - so watch this space. Anthony has a specialist for every symptom - quite a number of admirers when you cannot even sit up, never mind stand up.
We do not even know the full extent of what troubles await him - and if you are reading this I am sure you are thinking - what a trip - poor kid. But, as much as I may need to rant and release, never pity my little fella - he is a happy, relatively healthy, amazingly content small guy. I am realising that it is my time to reset expectations I was silly to have thrust upon him in the first place.
I need this space to work out things in my head, and if possible learn from others in a similar space and perhaps share a bit that might be of use to someone else. This blog is not going to be doom laden or pity filled - rather it is a story - a tale of a young life just starting, perhaps more differently than I imagined, but starting all the same. This is Antonio's song.
Christina - sleep deprived, but holding on
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