Tired, and feeling somewhat emotionally drained for the month of January, I start to wonder what the next eleven months will bring Gage and I.
I walked into our appointment almost twelve months after our first genetics appointment, perhaps I walked in somewhat guarded maybe even afraid. We all sat down, and discussed where Gage is today, and where he was over a year ago.
First off I will say I LOVED this doctor, she explained to me although she never met Gage she read his files. (Wow is all I can say, I mean Gage's files are extensive it is not just a few folders with some notes in them, but it is more like fourty files that are thick and seem endless.) After stating that she took all of that time to read my son's files I looked into her eyes and I finally knew "someone" got it, "someone" knew, read, and witnessed what we went through. I actually walked into an appointment and I did not have to waste an hour out of everybody's time and relive, rehash Gage's first four months. How professional, she read ALL of his files, this was the first time this had ever happened to us.
Gage has had a lot of blood drawn in his short life, my husband and I now seriously consider every poke, prod, examination, appointment, evaluation, and only consider it if it will benefit Gage. We now always ask ourselves is it fair for Gage, or will it be beneficial for Gage.
The hospital in the beginning did gather blood from Gage and gave it to genetics for testing and tested his chromosomes. The blood was not a good sample although there were no findings, chromosomes were good. Although he did have several abnormalities that he was born with, I thought they ruled everything as isolated and not syndromic. I just want to know why can't Gage be born like that just "because he was", why does it have to have a label? A scientific definition. They don't understand why it happened. What if that is just the way it is? Why do they need to find some syndrome? I understand it is science and science is changing everyday with advances in the field, but is it necessary to diagnose someone who was born one way and circumstances (meaning all of his trauma) altered him to another degree. She claimed the neurosurgeon felt he was born with some neurological damage, as well as the extent of all the other neurological damage that happened while in hospital. Was this the same doctor who saw white spots on his body and then asked me if he has had them since birth. I was unsure as to what he was talking about as I had never noticed white spots before. Yes, as I picked off the white spots from his skin they magically disappeared. Funny, how lint from your shirt does that sometimes!!! Seriously.
My boy seems to live under a microscope for some people.
Why was I not informed of this? Honestly I can say I feel this is so very inaccurate this claim. I KNOW the neurological damage was WHILE in hospital!!! I saw it happen before my eyes the first time, and I know how he was prior to all of these unforeseen misfortunate string of events.
They want blood again, and no I don't have to oblige. I will research, delve deeper into my soul, and research the benefits if any because it is the right thing for me to do for Gage. Every prick, and every owie Gage suffers now will be in my control, I somehow feel I owe him this, he has had enough suffering and pain to last him his lifetime.
Near the end of this meeting, I sobbed, and I cried in front of her and I didn't care. I am tired and I am sure Gage is also. She told me we were a strong family for Gage, we are exactly what Gage needs, she also told me to never give up hope.
I hope, this too shall pass, these problems and when he is a young man the hero stories I will tell him will be about a young baby who defied the odds, and how this baby grew into a boy who thrived, and then a strong young man that the world is ever so proud of. The hero in this story shall be named Gage.
Tired, and feeling somewhat emotionally drained for the month of January, I start to wonder what the next eleven months will bring Gage and I.
I walked into our appointment almost twelve months after our first genetics appointment, perhaps I walked in somewhat guarded maybe even afraid. We all sat down, and discussed where Gage is today, and where he was over a year ago.
First off I will say I LOVED this doctor, she explained to me although she never met Gage she read his files. (Wow is all I can say, I mean Gage's files are extensive it is not just a few folders with some notes in them, but it is more like fourty files that are thick and seem endless.) After stating that she took all of that time to read my son's files I looked into her eyes and I finally knew "someone" got it, "someone" knew, read, and witnessed what we went through. I actually walked into an appointment and I did not have to waste an hour out of everybody's time and relive, rehash Gage's first four months. How professional, she read ALL of his files, this was the first time this had ever happened to us.
Gage has had a lot of blood drawn in his short life, my husband and I now seriously consider every poke, prod, examination, appointment, evaluation, and only consider it if it will benefit Gage. We now always ask ourselves is it fair for Gage, or will it be beneficial for Gage.
The hospital in the beginning did gather blood from Gage and gave it to genetics for testing and tested his chromosomes. The blood was not a good sample although there were no findings, chromosomes were good. Although he did have several abnormalities that he was born with, I thought they ruled everything as isolated and not syndromic. I just want to know why can't Gage be born like that just "because he was", why does it have to have a label? A scientific definition. They don't understand why it happened. What if that is just the way it is? Why do they need to find some syndrome? I understand it is science and science is changing everyday with advances in the field, but is it necessary to diagnose someone who was born one way and circumstances (meaning all of his trauma) altered him to another degree. She claimed the neurosurgeon felt he was born with some neurological damage, as well as the extent of all the other neurological damage that happened while in hospital. Was this the same doctor who saw white spots on his body and then asked me if he has had them since birth. I was unsure as to what he was talking about as I had never noticed white spots before. Yes, as I picked off the white spots from his skin they magically disappeared. Funny, how lint from your shirt does that sometimes!!! Seriously.
My boy seems to live under a microscope for some people.
Why was I not informed of this? Honestly I can say I feel this is so very inaccurate this claim. I KNOW the neurological damage was WHILE in hospital!!! I saw it happen before my eyes the first time, and I know how he was prior to all of these unforeseen misfortunate string of events.
They want blood again, and no I don't have to oblige. I will research, delve deeper into my soul, and research the benefits if any because it is the right thing for me to do for Gage. Every prick, and every owie Gage suffers now will be in my control, I somehow feel I owe him this, he has had enough suffering and pain to last him his lifetime.
Near the end of this meeting, I sobbed, and I cried in front of her and I didn't care. I am tired and I am sure Gage is also. She told me we were a strong family for Gage, we are exactly what Gage needs, she also told me to never give up hope.
I hope, this too shall pass, these problems and when he is a young man the hero stories I will tell him will be about a young baby who defied the odds, and how this baby grew into a boy who thrived, and then a strong young man that the world is ever so proud of. The hero in this story shall be named Gage.