howdy friends
sorry for the lack of updates. actually no i'm not sorry because hey this is our blog and we'll update it when we want to (no offense intended...we love the handful of you that actually read this blog). anyways, i'm procrastinating on grading right now so i thought i'd share a couple of updates:
Seattle!
Remember how I told you about Dr. Dobyns at Seattle Children's Hospital? Well so much for that appointment wait list being at 6-8 months...we are officially in for August 26. We've got hotels booked and are working on flights right now. So little gommy pants face is going to get to take his second plane ride for an appointment that's just about him.
We've heard great things about this guy, so I'm hoping that our expectations are met. I'm kind of picturing myself being a 13 year old girl who just met the jonas brothers. I might scream, i might faint, i'm definitely getting pictures and an autograph before getting down to business to pick this guy's brain on what he knows and what he can tell us.
Vacation!
Before that seattle trip, we're headed out with the entire twisty extended family for a week in florida, and let me tell you...after the past 6 months, we can certainly use it. A full week in a VRBO house with a pool and a hot tub overlooking a body of water. Pretty much perfect.
Gommy!
Gommy is making great progress. We're sitting up for extended periods of time, lifting our heads up high, working on rolling over consistently, and definitely playing with toys. The one fantastic thing is that over the past few weeks we've seen him get really into making eye contact...he'll look around for us and the second he sees mommy or daddy he just gets the biggest damn smile on his face. And my heart melts into a puddle on the floor.
Feelings!
We've replaced good days and bad days with good moments and moments that are good but could still be better. I am actually in the middle of one of those could be better moments. When I see my beautiful Gommy, all is well. I recognize that my goodness he's made so much progress over the past three months. When I go to PT or I read stuff on the internet about hemiparesis CP, i cant lie. it makes me sad. it's the difference between thinking of my sweet gommy as a person vs my son...if that makes sense. I want nothing but the best for him, and i think every parent wants their kids life to be nothing but easy and full of joy. What i have to keep telling myself is that 1) easy is in the eye of the beholder--and that everyone has challenges they need to overcome and 2) my son is full of joy and me being a whiny sad little bitch doesnt help him be full of joy.
So much of this journey is/has been about checking myself. Losing myself in service and love of my son. Losing this sense of ego, this sense of...the desire to control and give it all to God. Serve God by serving my son, if that makes sense. And part of serving Gommy means doing things with joy in my heart and love...without any reservation of what the future might hold simply because I have no control whatsoever about the future might hold.
I suppose that's what faith is about. And admittedly i struggle with faith sometimes. I mean i have it, but the intellectual in me wonders why I have it...then i look around at my loved ones...and well life makes sense again and I can say "HEY INTELLECTUAL. SHUT THE EFF UP"
Anyhoo. That's about as philosophic as i'm willing to wax right now. We have adjusted to the 4 appointment a week lifestyle...and are in the process of making even bigger picture family decisions (more on that later). Life is good right now, and only getting better.
Tuesday, April 30, 2013
Friday, April 5, 2013
Million Dollar Baby
Ever since we decided to start looking at things differently, I have been, well, happy. At one point I never thought that I would feel like my usually happy carefree self. It's amazing how God can truly alter your perspective of things. One of the things I have been making a conscious effort of is to look at this as a rehabilitation (or maybe habilitation if he has never done it before?) instead of treatment. The damage is done. We now need to work on getting him to the best place he can be. With that I have started googling things like baby designer eyeglasses instead of polymicrogyria prognosis.
One of the things that people keep telling us to do is to make sure we take time for ourselves. With that in mind, I scheduled a very special massage for Thursday. At 4pm, I will be driving out to the country to go to a very exclusive spa. There is a lake and apparently horses and it is supposed to be very serene. I will be in a dark room with aromatherapy and candles. It will be amazing and relaxing. Something every mom needs... Too bad its not for me. This massage is for Gommy. That is right, I am paying for my 7-month old to have an $80/hour massage. This is my new reality, and I can't help but laugh. He has a physical therapist, an occupational therapist, a chiropractor, and now a massage therapist. All of which he sees weekly or bi-weekly. This doesn't even include any of his actual doctors of which he has a pediatrician, a neurologist, and soon a developmental pediatrician, eye doctor and ear doctor. He is one spoiled little man.
We are also working on getting him an appointment with the world polymicrogyria expert, Dr. William Dobyn in Seattle. Oh Gommy, the things we would do for you.
With all of these treatments we are trying to help him form new brain connections. Sometimes I worry that with all these swanky treatments with massage therapists, chiropractors and day trips to Seattle he is going to start to make new connections that lead him to believe he is incredibly wealthy. I suppose that is just something I will have to deal with as it comes. Don't worry baby, mommy would rob banks for you. Come to think of it, I don't know that having PMG is all that different than growing up as Blue Ivy. There are probably less diamond encrusted barbie dolls though.
One of the things that hasn't changed is that Poppa and I are no more of adults than when we started this. We don't have a secret stock of toothbrushes and paper towels just waiting for when we need them. We still run to Walgreens at least twice a week to get something that we ran out of or forgot at the store. Refusing to grow up does have its perks though. We decided that tomorrow we are celebrating Happy Saturday. We have cupcakes and candles and presents for the boys. We will be ordering pizza and eating it in Mommy and Daddy's bed while watching movies. We are even going to let the boys stay up past bed time and fall asleep in our bed. None of this is responsible and I will probably be annoyed on Sunday night when I fall asleep amongst pizza crumbs. But that is one of the great things about not being a real adult. I can do what I want and forget about consequences. Sometimes it is best to live in the moment. I love this life, and I love my men. It's cool if you're jealous, I would be.
One of the things that people keep telling us to do is to make sure we take time for ourselves. With that in mind, I scheduled a very special massage for Thursday. At 4pm, I will be driving out to the country to go to a very exclusive spa. There is a lake and apparently horses and it is supposed to be very serene. I will be in a dark room with aromatherapy and candles. It will be amazing and relaxing. Something every mom needs... Too bad its not for me. This massage is for Gommy. That is right, I am paying for my 7-month old to have an $80/hour massage. This is my new reality, and I can't help but laugh. He has a physical therapist, an occupational therapist, a chiropractor, and now a massage therapist. All of which he sees weekly or bi-weekly. This doesn't even include any of his actual doctors of which he has a pediatrician, a neurologist, and soon a developmental pediatrician, eye doctor and ear doctor. He is one spoiled little man.
We are also working on getting him an appointment with the world polymicrogyria expert, Dr. William Dobyn in Seattle. Oh Gommy, the things we would do for you.
With all of these treatments we are trying to help him form new brain connections. Sometimes I worry that with all these swanky treatments with massage therapists, chiropractors and day trips to Seattle he is going to start to make new connections that lead him to believe he is incredibly wealthy. I suppose that is just something I will have to deal with as it comes. Don't worry baby, mommy would rob banks for you. Come to think of it, I don't know that having PMG is all that different than growing up as Blue Ivy. There are probably less diamond encrusted barbie dolls though.
One of the things that hasn't changed is that Poppa and I are no more of adults than when we started this. We don't have a secret stock of toothbrushes and paper towels just waiting for when we need them. We still run to Walgreens at least twice a week to get something that we ran out of or forgot at the store. Refusing to grow up does have its perks though. We decided that tomorrow we are celebrating Happy Saturday. We have cupcakes and candles and presents for the boys. We will be ordering pizza and eating it in Mommy and Daddy's bed while watching movies. We are even going to let the boys stay up past bed time and fall asleep in our bed. None of this is responsible and I will probably be annoyed on Sunday night when I fall asleep amongst pizza crumbs. But that is one of the great things about not being a real adult. I can do what I want and forget about consequences. Sometimes it is best to live in the moment. I love this life, and I love my men. It's cool if you're jealous, I would be.
Thursday, April 4, 2013
started from the bottom now we here
warning: i've been listening to a lot of rap lately, and the following post might reflect it.
Dear PMG,
F*** you.
And i dont mean that in an mean way, i dont mean that in an angry way, i mean that in a dismissive way. I mean that in an openly defiant way. I mean that in a way to say that although i might not be done with you, I will no longer be shrouded in a cloud of sadness and uncertainty because of you.
F*** you.
For the past week you've robbed my family of our normal light hearted, care free attitude towards parenting that sometimes borders on negligent (2 year old wants cheetos for dinner? #YOLO!). we've been down. we've been reading. we've been obsessed. we've been frustrated that no one, including brilliant doctors can give us answers about what you are about and what you might do. We've been as down as we've ever been. But as of 6:35 on Wednesday, April 3 2013, twisty and poppa decided to be happy. we decided to be happy not inspite of what's going on, but to take joy in our lives. if you, PMG, are to be a part of our world, that's fine. but you will not make us sad. you will not rob us of the joy of raising two beautiful children. we will not worry about tomorrow, and instead we will rejoice in today.
F*** you. We're in charge.
My beautiful gommy agrees with this new sentiment...and perhaps he was the first to raise his middle finger at you. Over and over again we've been told that his activities, his spirit, his nature does not line up with what folks who have to deal with you are doing. My son is overcoming you on a daily basis. You have not brought him down, and now it's time for mom and dad to follow suit.
Does this mean we will not get sad? No. There will still be up days and down days, but you will not and i repeat WILL NOT take over all of the mental and emotional energy that twisty and poppa have. We refuse. We will conquer you with an indomitable spirit. We will work around you. We will work through you. But more than anything, we refuse to accept the notion we should be sad because of you. No longer. We gave you a week. That's all you get.
F*** you.
This is a marathon and not a sprint. We are geared up. We are fired up. We are focused and committed to loving our children more, and being happy...and instilling that sense of joy about all of God's gifts in our kids. Nothing, not even you, can stop that.
In the song "a milli" lil wayne says "ok you a goon...but what's a goon to a goblin". basically saying sure you're a goon. you're a bad intimidating guy. but that's nothing to who i am. goons should be afraid of goblins.
So i say the same to you PMG. ok...you a goon. but what's a goon to a goblin?
Twisty, Poppa, Gommy, and Tooties are all goblins. Bring it. We in this thing now.
Dear PMG,
F*** you.
And i dont mean that in an mean way, i dont mean that in an angry way, i mean that in a dismissive way. I mean that in an openly defiant way. I mean that in a way to say that although i might not be done with you, I will no longer be shrouded in a cloud of sadness and uncertainty because of you.
F*** you.
For the past week you've robbed my family of our normal light hearted, care free attitude towards parenting that sometimes borders on negligent (2 year old wants cheetos for dinner? #YOLO!). we've been down. we've been reading. we've been obsessed. we've been frustrated that no one, including brilliant doctors can give us answers about what you are about and what you might do. We've been as down as we've ever been. But as of 6:35 on Wednesday, April 3 2013, twisty and poppa decided to be happy. we decided to be happy not inspite of what's going on, but to take joy in our lives. if you, PMG, are to be a part of our world, that's fine. but you will not make us sad. you will not rob us of the joy of raising two beautiful children. we will not worry about tomorrow, and instead we will rejoice in today.
F*** you. We're in charge.
My beautiful gommy agrees with this new sentiment...and perhaps he was the first to raise his middle finger at you. Over and over again we've been told that his activities, his spirit, his nature does not line up with what folks who have to deal with you are doing. My son is overcoming you on a daily basis. You have not brought him down, and now it's time for mom and dad to follow suit.
Does this mean we will not get sad? No. There will still be up days and down days, but you will not and i repeat WILL NOT take over all of the mental and emotional energy that twisty and poppa have. We refuse. We will conquer you with an indomitable spirit. We will work around you. We will work through you. But more than anything, we refuse to accept the notion we should be sad because of you. No longer. We gave you a week. That's all you get.
F*** you.
This is a marathon and not a sprint. We are geared up. We are fired up. We are focused and committed to loving our children more, and being happy...and instilling that sense of joy about all of God's gifts in our kids. Nothing, not even you, can stop that.
In the song "a milli" lil wayne says "ok you a goon...but what's a goon to a goblin". basically saying sure you're a goon. you're a bad intimidating guy. but that's nothing to who i am. goons should be afraid of goblins.
So i say the same to you PMG. ok...you a goon. but what's a goon to a goblin?
Twisty, Poppa, Gommy, and Tooties are all goblins. Bring it. We in this thing now.
Tuesday, April 2, 2013
it's been one week...
i have no idea why i've used lyrics from 90s music for both of my blog posts, but we'll go with it.
as the title says, it's been one week since receiving word about gommy's PMG. a week ago at this time we were in the MRI room hoping that he wouldnt wake up during the scan. the week since has been filled with lots of prayer, some tears, conversation with family and a lot of research.
based on that research we know that epilepsy/seizure activity is likely, as are physical impairments. that's the baseline right now. we found that 60% of kids have perisylvian PMG...meaning the PMG affects the perisylvian region of the brain...and after doing more research the perisylvian region is the area around the sylvian fissure, which connects the frontal and temporal lobe (apologies to any real doctors out there reading this). perisylvian PMG typically comes with feeding issues, which in turn can lead to speech delays...but as far as we know now our little fatty pants dominic has no issues feeding...so i think we might be in the clear there. we meet with our pediatrician tomorrow, so i'm sure he'll be able to give us more information on what all we need to be thinking about.
it's hard to rely on statistics, but based on the journal articles we're reading, i think we can fairly certainly say that gommy will have seizure activity, physical impairments, and perhaps learning disabilities.
last night the wife and i were going to bed and just before falling asleep i had a terrifying realization...i rolled over and whispered. "we have no idea what to do if gommy has a seizure"...to which she replied "you're right, we need to ask our pedi about that".
that was it for sleeping right there...fortunately the wife couldnt sleep either, so we went out into the living room and finished a bottle of wine while laughing about the terrible finale of walking dead and other random things from the day. for the first time in a week, sleep came easy after that.
i feel ok. i'm on an emotional roller coaster. there are days where i'm up as up can be and the next day i'm just kind of meh. i'm ready for it to norm out a bit.
this past weekend we visited twisty's parents...and we went for a run around her block...about 3 miles. on that run we realized something we already knew...that our life's purpose is to be parents to our two beautiful children...and that all this does is make us want to parent harder. to love deeper. to be more committed to what we are about. our true north lies in our children and in each other, and perhaps the gift from all of this is the opportunity to never take parenting for granted, or to get bored with the process.
speaking of our two beautiful children, i cannot even tell you how good of a big brother tooties is to gommy. we've made a concerted effort over the past two days to have them interact more--the best therapy gommy can receive is interaction with his older brother. and my goodness his older brother has taken that role on with zeal and enthusiasm. from pouring water on gommy in the bath, to interacting with him while gommy's in his excersaucer, to teaching gommy how to say "ba-ba-ba"...to this morning tooties teaching gommy what a lion says, and what a cow says, etc. i wish i had an older brother like vincent. those two...well. they're a match made in heaven. literally.
i've come along way since last wednesday. i'm sure next week will be even better than this week. and so on and so forth. life will settle down and we'll get into a routine soon enough.
as the title says, it's been one week since receiving word about gommy's PMG. a week ago at this time we were in the MRI room hoping that he wouldnt wake up during the scan. the week since has been filled with lots of prayer, some tears, conversation with family and a lot of research.
based on that research we know that epilepsy/seizure activity is likely, as are physical impairments. that's the baseline right now. we found that 60% of kids have perisylvian PMG...meaning the PMG affects the perisylvian region of the brain...and after doing more research the perisylvian region is the area around the sylvian fissure, which connects the frontal and temporal lobe (apologies to any real doctors out there reading this). perisylvian PMG typically comes with feeding issues, which in turn can lead to speech delays...but as far as we know now our little fatty pants dominic has no issues feeding...so i think we might be in the clear there. we meet with our pediatrician tomorrow, so i'm sure he'll be able to give us more information on what all we need to be thinking about.
it's hard to rely on statistics, but based on the journal articles we're reading, i think we can fairly certainly say that gommy will have seizure activity, physical impairments, and perhaps learning disabilities.
last night the wife and i were going to bed and just before falling asleep i had a terrifying realization...i rolled over and whispered. "we have no idea what to do if gommy has a seizure"...to which she replied "you're right, we need to ask our pedi about that".
that was it for sleeping right there...fortunately the wife couldnt sleep either, so we went out into the living room and finished a bottle of wine while laughing about the terrible finale of walking dead and other random things from the day. for the first time in a week, sleep came easy after that.
i feel ok. i'm on an emotional roller coaster. there are days where i'm up as up can be and the next day i'm just kind of meh. i'm ready for it to norm out a bit.
this past weekend we visited twisty's parents...and we went for a run around her block...about 3 miles. on that run we realized something we already knew...that our life's purpose is to be parents to our two beautiful children...and that all this does is make us want to parent harder. to love deeper. to be more committed to what we are about. our true north lies in our children and in each other, and perhaps the gift from all of this is the opportunity to never take parenting for granted, or to get bored with the process.
speaking of our two beautiful children, i cannot even tell you how good of a big brother tooties is to gommy. we've made a concerted effort over the past two days to have them interact more--the best therapy gommy can receive is interaction with his older brother. and my goodness his older brother has taken that role on with zeal and enthusiasm. from pouring water on gommy in the bath, to interacting with him while gommy's in his excersaucer, to teaching gommy how to say "ba-ba-ba"...to this morning tooties teaching gommy what a lion says, and what a cow says, etc. i wish i had an older brother like vincent. those two...well. they're a match made in heaven. literally.
i've come along way since last wednesday. i'm sure next week will be even better than this week. and so on and so forth. life will settle down and we'll get into a routine soon enough.
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