Life goes easy on me...most of the time.
I don't even really know where to start. My feelings are all over the place depending on when you talk to me. Sometimes I think Gommy is going to grow up the same as other kids do. Sometimes I think that is me being in denial, others that its just me being positive. No one tells you how to feel in this situation. I don't think there is anything that I have done in my life that I haven't watched someone else do before me. Think about it, having kids is something that most people are nervous or scared about. You have likely watched someone (and everyone) do it for twenty something years before you even attempt it for yourself. I am going to do something that I have never watched anyone do before me. Part of me is proud of that. Part of me feels special. Part of me feels chosen. Part of me feels lonely. I just joined the most exclusive club that nobody wants to join. I am a special needs mom.
There are some things that I feel are necessary to add to Poppa's post. They are the scariest things that anyone has said to me, and I think it is important to disclose what our sweet Gommy is facing. Only so that he gets the credit he deserves when he overcomes all that he will, whatever that looks like.
Our neurologist said he will have physical limitations, he may have "mental retardation" (which is an ugly word I chose to never use again), and possibly seizures. He called the damage and the abnormalities "substantial". He told us he did not know if Gommy would be able to live a normal life. He did give us some hope however, he said that looking at Gommy, he did not match up with his MRI scans. I chose to take that as what Gommy has already accomplished is miraculous. What he continues to accomplish will be even more miraculous.
Its funny, because Gommy appears to be very intelligent at this point, but only time will tell what his special little brain is truly capable of. I truly believe that Gommy will continue to amaze us. He sat up for about 30 seconds at a time today completely unassisted! At this point, he has not actually missed any milestones, he is just not as strong at his skills as your average baby. He has two wonderful therapists and a chiropractor already. So far every concern that we have had, he has been able to overcome in a couple of weeks. He is truly an amazing person and the happiest baby you will ever meet. I cannot even begin to describe the joy this little man has already brought into our lives.
One of the things Poppa said to me soon after we found out, was that everyone has something to overcome. His example was that he had extreme nearsightedness. My example was that some people are ugly. I have always said that I am raising my boys to be good looking, so they can always get what they want out of life. That hasn't changed.
When God chose me to be part of this higher calling, I hope He knew what He was getting in to.
Saturday, March 30, 2013
Friday, March 29, 2013
you down with PMG?
yeah you know me. (shout out to all of my naughty by nature fans--i promise that title will make sense as you read)
to preface this posting...dominic has many nicknames, so you'll hear a few ways of referring to him over the course of this post. dommy, dom, dommy football and gommy (what his brother calls him) among others.
dommy has always been tight. since birth. he's looked to his right and held his arms and legs close to him. we thought it was just how babies are...that it was no big deal...but worth exploration with our doctor at some point.
so in december we went to go see our pediatrician, who, even before we mentioned what was going on, noticed dominic's head turning and also indicated that dommy had some plagiocephaly (asymmetrical skull) as a result of his torticollis (tightened neck muscle causing him to turn to the right). he told us that we needed to go see a cranial band specialist, and start considering physical therapy to help gommy loosen up that neck.
cant deny it. this stressed twisty and poppa out. but in hindsight, that was really nothing.
so after consulting with insurance folks we set up appointments with cranial technologies in austin to get fitted for a cranial band...and we had one appointment with a PT here in town...and the appointment didnt really amount to much. i dont think she was too familiar with working with babies, and she basically just taught us a few excercises we could do on our own to help loosen dommy football's neck.
so after the initial meeting with the folks at cranial technologies, we went back to austin for his actual fitting...gotta say those folks there are incredibly nice and very much suited for their jobs. they gave us a clinical looking white plastic helmet (which for those of you who are friends with us on facebook know that my wife shaped into many incredible forms) and told us to come back once a week.
yup. every friday we drove to austin for a 40 minute appointment. for 8 weeks. God bless twisty's mom who was able to help us out with that.
they also recommended that we set an appointment with early childhood intervention (ECI) to get physical and occupational therapy based on gommy's tightness. again...through this process God has brought so many wonderful people into our lives, and the ECI folks are just another group of wonderfully nice people. Harriet, our case manager, has been just the nicest person...cant even begin to describe.
So anyways, once a week we were in austin, and another time during the week we were either doing PT or OT. our PT/OT folks talked about how much progress dommy was making, but they kept mentioning how tight he was and that it might be something we needed to consult a neurologist about. The way twisty and i work is that we flow all of our information through our pediatrician...so we set up an appointment with him to talk about it.
side note--dommy has tight days and loose days...and typically his tight days are days that he goes to the doctor--go figure.
anyways...on that particular day gommy was tight...and our doctor noticed. he said that it was concerning but wanted to meet with us in about 6 weeks to see if the PT had any affect and we'd go from there. somewhat alarming, but ok by us.
poppa got to work and got a phone call from our pedi at 11 am (which by the way is awesome that he'd do that for us) indicating that the pedi had thought about it more and wanted us to set up an appointment with a neurologist sooner rather than later to be safe. he gave us a referral to a doctor in austin and told us to set up an appointment.
God has been everywhere through all of this. Pedi neurologists are a pain in the ass to get an appointment with. Poppa called wednesday and it turns out that the neuro in austin had a cancellation on monday...so instead of having to wait the normal three weeks for an appointment, we waited three days...we were even able to make a long weekend out of it because of gommy's band appointment on friday. God. is. everywhere.
so we went to that appointment, and really it wasnt much. the doctor's impressions were based on our observations...that gommy prefered his right arm to his left...that he was tight...that he was a bit behind with sitting up and rolling over. the pedi neuro said that it's likely that something is causing this, but that if it were to be severe it would already be severe. he recommended that we get an MRI.
so more scheduling. three weeks away. but fortunately our neuro folks were able to get us an MRI in the morning and a consultation appointment in the afternoon which saved us 1) from making two trips to austin and 2) the heartache of fretting over the results for too long.
today is friday. the appointment happened on tuesday.
monday afternoon we drove to twisty's sister's house and stayed the night and enjoyed a wonderful chinese dinner. we woke up bright and early and went to the MRI place. the MRI was a bit of an adventure because they didnt really want to listen to us about our kids sleeping habits...but we got it figured out (even though dommy woke up in the 19th minute of a 20 minute scan--terrifying for poppa...but when it comes to his kids poppa gets terrified very easily). so after the scan we went back to twisty's sister's house and hung out before going to meet with the neuro.
i should say that going into this appointment well we had no idea what to expect. we thought physical delays were probable, but that's about it.
we went in to the appointment at 3 (our appt wasnt until 4, but they were going to try and work us in)...and to their credit they worked us in at 3:15. the doctor came in and told us that he'd gone over the scans, and that dommy had Polymicrogyria...a rare brain condition where the brain didnt develop properly...and instead of a few thick folds in the white matter, dommy's brain has many small folds. we went to his office to look at the films, and twisty peppered him with questions while poppa kind of just sat there. the gist of what he told us was:
1) physical delays are probable and that he'd likely be right handed (which is great because left handed folks are a little weird)
2) cognitive delays are possible
3) the scans dont match up with what dommy is doing...meaning dommy is ahead of the curve.
so after that we had to drive back to austin to pick little tooties (gommy's brother) and then head back home. the positive thing was that immediately after getting home we had to settle into the panic/intense routine of getting them fed, bathed, and to bed...and then after that was done...the silence hit.
silence is a bad thing. lack of business gives you time to think, to be sad, to fret, to worry. all that. maybe that's a good thing...maybe i'm just tired of it.
the next day (wednesday) at work for me was spent getting my PhD in infant neurology from google university. i'd read through scholarly documents and use google to find out what the hell they were saying...and it actually worked. what we found out was that PMG is a rare disorder and really no one knows much about it. there are folks who have severe cases who are performing just fine and others who have more mild cases that have significant developmental delays. there were more than a few breakdowns that day...which is to be expected i suppose.
that evening after the rush of getting the kids played with and to bed and fed and bathed (not in that order because that would be chaos) twisty and poppa sat back and let the glory of facebook do its work. we reached out to three different support groups and got in contact with parens of kids with PMG, college students with PMG and even a 30 something year old mom with PMG...and what we realized was that things were going to be ok. the term ok is yet to be defined, but it's all going to be ok.
thursday was a better day at work...for those of you who dont know i teach a class and i couldnt really get through the regular bullshit of teaching about stuff, so i decided to teach my students about clarity of values...because above all the fact that poppa and twisty know that their family is the single most important thing in the world--well it helped us navigate through our multiple options. so in class we talked about values, and living according to them...and i was quite open about where this was coming from.
after class was over one student walked back and asked if he could pray with me for my son. and as much as i'm tearing up thinking about that now, i broke down when he said that. we prayed. and again i was overcome by the beauty of random people. people do care. they do.
so now it's friday, and twisty and i have landed at a good place, which i'll detail out in the next post. in the mean time, i wanted to get this history down on paper before i forget it.
1) God makes no mistakes and 2) God never gives you more than you can handle. God's got more faith in me than i have right now. but if He brings you to it He'll bring you through it.
to preface this posting...dominic has many nicknames, so you'll hear a few ways of referring to him over the course of this post. dommy, dom, dommy football and gommy (what his brother calls him) among others.
dommy has always been tight. since birth. he's looked to his right and held his arms and legs close to him. we thought it was just how babies are...that it was no big deal...but worth exploration with our doctor at some point.
so in december we went to go see our pediatrician, who, even before we mentioned what was going on, noticed dominic's head turning and also indicated that dommy had some plagiocephaly (asymmetrical skull) as a result of his torticollis (tightened neck muscle causing him to turn to the right). he told us that we needed to go see a cranial band specialist, and start considering physical therapy to help gommy loosen up that neck.
cant deny it. this stressed twisty and poppa out. but in hindsight, that was really nothing.
so after consulting with insurance folks we set up appointments with cranial technologies in austin to get fitted for a cranial band...and we had one appointment with a PT here in town...and the appointment didnt really amount to much. i dont think she was too familiar with working with babies, and she basically just taught us a few excercises we could do on our own to help loosen dommy football's neck.
so after the initial meeting with the folks at cranial technologies, we went back to austin for his actual fitting...gotta say those folks there are incredibly nice and very much suited for their jobs. they gave us a clinical looking white plastic helmet (which for those of you who are friends with us on facebook know that my wife shaped into many incredible forms) and told us to come back once a week.
yup. every friday we drove to austin for a 40 minute appointment. for 8 weeks. God bless twisty's mom who was able to help us out with that.
they also recommended that we set an appointment with early childhood intervention (ECI) to get physical and occupational therapy based on gommy's tightness. again...through this process God has brought so many wonderful people into our lives, and the ECI folks are just another group of wonderfully nice people. Harriet, our case manager, has been just the nicest person...cant even begin to describe.
So anyways, once a week we were in austin, and another time during the week we were either doing PT or OT. our PT/OT folks talked about how much progress dommy was making, but they kept mentioning how tight he was and that it might be something we needed to consult a neurologist about. The way twisty and i work is that we flow all of our information through our pediatrician...so we set up an appointment with him to talk about it.
side note--dommy has tight days and loose days...and typically his tight days are days that he goes to the doctor--go figure.
anyways...on that particular day gommy was tight...and our doctor noticed. he said that it was concerning but wanted to meet with us in about 6 weeks to see if the PT had any affect and we'd go from there. somewhat alarming, but ok by us.
poppa got to work and got a phone call from our pedi at 11 am (which by the way is awesome that he'd do that for us) indicating that the pedi had thought about it more and wanted us to set up an appointment with a neurologist sooner rather than later to be safe. he gave us a referral to a doctor in austin and told us to set up an appointment.
God has been everywhere through all of this. Pedi neurologists are a pain in the ass to get an appointment with. Poppa called wednesday and it turns out that the neuro in austin had a cancellation on monday...so instead of having to wait the normal three weeks for an appointment, we waited three days...we were even able to make a long weekend out of it because of gommy's band appointment on friday. God. is. everywhere.
so we went to that appointment, and really it wasnt much. the doctor's impressions were based on our observations...that gommy prefered his right arm to his left...that he was tight...that he was a bit behind with sitting up and rolling over. the pedi neuro said that it's likely that something is causing this, but that if it were to be severe it would already be severe. he recommended that we get an MRI.
so more scheduling. three weeks away. but fortunately our neuro folks were able to get us an MRI in the morning and a consultation appointment in the afternoon which saved us 1) from making two trips to austin and 2) the heartache of fretting over the results for too long.
today is friday. the appointment happened on tuesday.
monday afternoon we drove to twisty's sister's house and stayed the night and enjoyed a wonderful chinese dinner. we woke up bright and early and went to the MRI place. the MRI was a bit of an adventure because they didnt really want to listen to us about our kids sleeping habits...but we got it figured out (even though dommy woke up in the 19th minute of a 20 minute scan--terrifying for poppa...but when it comes to his kids poppa gets terrified very easily). so after the scan we went back to twisty's sister's house and hung out before going to meet with the neuro.
i should say that going into this appointment well we had no idea what to expect. we thought physical delays were probable, but that's about it.
we went in to the appointment at 3 (our appt wasnt until 4, but they were going to try and work us in)...and to their credit they worked us in at 3:15. the doctor came in and told us that he'd gone over the scans, and that dommy had Polymicrogyria...a rare brain condition where the brain didnt develop properly...and instead of a few thick folds in the white matter, dommy's brain has many small folds. we went to his office to look at the films, and twisty peppered him with questions while poppa kind of just sat there. the gist of what he told us was:
1) physical delays are probable and that he'd likely be right handed (which is great because left handed folks are a little weird)
2) cognitive delays are possible
3) the scans dont match up with what dommy is doing...meaning dommy is ahead of the curve.
so after that we had to drive back to austin to pick little tooties (gommy's brother) and then head back home. the positive thing was that immediately after getting home we had to settle into the panic/intense routine of getting them fed, bathed, and to bed...and then after that was done...the silence hit.
silence is a bad thing. lack of business gives you time to think, to be sad, to fret, to worry. all that. maybe that's a good thing...maybe i'm just tired of it.
the next day (wednesday) at work for me was spent getting my PhD in infant neurology from google university. i'd read through scholarly documents and use google to find out what the hell they were saying...and it actually worked. what we found out was that PMG is a rare disorder and really no one knows much about it. there are folks who have severe cases who are performing just fine and others who have more mild cases that have significant developmental delays. there were more than a few breakdowns that day...which is to be expected i suppose.
that evening after the rush of getting the kids played with and to bed and fed and bathed (not in that order because that would be chaos) twisty and poppa sat back and let the glory of facebook do its work. we reached out to three different support groups and got in contact with parens of kids with PMG, college students with PMG and even a 30 something year old mom with PMG...and what we realized was that things were going to be ok. the term ok is yet to be defined, but it's all going to be ok.
thursday was a better day at work...for those of you who dont know i teach a class and i couldnt really get through the regular bullshit of teaching about stuff, so i decided to teach my students about clarity of values...because above all the fact that poppa and twisty know that their family is the single most important thing in the world--well it helped us navigate through our multiple options. so in class we talked about values, and living according to them...and i was quite open about where this was coming from.
after class was over one student walked back and asked if he could pray with me for my son. and as much as i'm tearing up thinking about that now, i broke down when he said that. we prayed. and again i was overcome by the beauty of random people. people do care. they do.
so now it's friday, and twisty and i have landed at a good place, which i'll detail out in the next post. in the mean time, i wanted to get this history down on paper before i forget it.
1) God makes no mistakes and 2) God never gives you more than you can handle. God's got more faith in me than i have right now. but if He brings you to it He'll bring you through it.
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